Section 11: Palliative Care

INTRODUCTION

Palliative care focuses on effective management of pain and other distressing symptoms, and integrates psychosocial and spiritual care by considering a patient’s and family’s needs, preferences, values, beliefs, and culture (see Table 214-1). The palliative care approach works to improve quality of life for the patient and family by reducing a patient’s symptom burden, providing clear communication about what to expect in the future, and aligning realistic treatment options with patient- and family-determined goals of care (see Table 214-2).

Unlike hospice, which requires that a physician endorse a 6-month prognosis in order for a patient to qualify for hospice services, palliative care (sometime referred to as supportive care), is provided in conjunction with curative treatment at any point in the disease trajectory from the time of diagnosis (see Figure ­214-1). Palliative treatment options may become a greater focus for the patient and the care team when the burden of curative treatment outweighs the benefits, or when there are no longer effective disease-­modifying treatments. Provision of palliative care in the course of serious illness occurs across multiple care settings, and requires communication across the varied settings to maintain continuity of care (Table 214-3).

ROLE OF HOSPITALISTS IN PALLIATIVE CARE

Modern palliative care is no longer considered brink-of-death care. Timely palliative care consultations provided alongside disease-directed therapies have demonstrated improvement in quality of care, reduction of costs, and sometimes an increase in longevity. An interdisciplinary team is a key component to palliative care, where the focus is not only on the patient’s needs but also the needs of the family, which includes any person the patient identifies as part of his or her support network.

However, challenges in the delivery of effective palliative care remain. In 2014, the Institute of Medicine released a report entitled, “Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life.” Key findings highlight the deficiencies and challenges in the universal delivery of high-quality palliative care, including

• Slow, widespread adoption of timely referrals to palliative care

• Multiple transitions between and within health care settings for patients with advanced serious illness

• Increasing demand for family caregivers for patients

• Surrogate decision making about treatment decisions without a clear understanding of prognosis

Hospitalists play a key role in ensuring that patients receive quality palliative care. Beyond disease management related to acute exacerbations of chronic illness, hospitalists are able to take advantage of crucial moments to address and document a patient’s understanding of prognosis, treatment options and goals of care at various points along a disease course. Unlike the outpatient primary care clinician who may have the benefit of developing a close relationship with the patient and family members over time, hospitalists can assess a patient’s condition from a fresh perspective. Because hospitalists need to elicit a patient’s and/or family’s understanding of a patient’s overall condition quickly without the benefit of a long-term relationship, this can allow an opportunity for open discussion and more accurate prognostication.

PRIMARY AND SPECIALIST PALLIATIVE CARE

Training in palliative care for hospitalists caring for patients with serious advanced illness has become an urgent priority. Data from the Dartmouth Atlas show that more than 70% of Americans who die of a chronic illness each year are admitted to a hospital during the last 6 months of life. Existing palliative care needs continue to outstrip the availability of the palliative care workforce: a shortage of approximately 11,000 clinicians to staff existing hospital-based palliative care programs was found in 2010 and this gap is expected to widen as the population ages.

Because of the scope of work and volume of patients seen, hospitalists are primed to achieve palliative care competencies in effective symptom management, skilled and nuanced communication, and interdisciplinary teamwork. This is considered “primary” or generalized palliative care, as compared to specialized palliative care. Core components of primary palliative care include: (1) skills in symptom assessment and management, such as the safe use of opioids in pain relief, adjuvant approaches to pain management, and treatment of nonpain symptoms and treatment side effects, (2) skills in effective and emphatic communication, such as how to communicate bad news and address strong emotions and how to clarify a patients’ wishes and build consensus among treatments teams and patients/families, and (3) skills in interdisciplinary teamwork, such as knowing how to work together with an interdisciplinary team to provide an effective and appropriate care management plan upon discharge.

Patients with complex needs may require a referral to a specialized palliative care team, which can provide assistance with difficult-to-control symptoms and conflict resolution regarding goals and treatments with families, between staff and families, and among treatment teams.

TRIGGERS FOR PALLIATIVE CARE ASSESSMENT

Hospital teams are using specified triggers to help initiate assessment for palliative care needs. One trigger, the surprise question—“Would you be surprised if the patient died within 12 months?” has been successfully utilized to identify patient populations in need of advance care planning (ACP) discussions. Worsening disease status, rapid functional decline, or repeat hospitalizations over a short period of time may also signal a need for a more in-depth conversation with the patient and family. Other triggers may be based on events, such as device placement (eg, feeding tube, tracheostomy, left ventricular assist device [LVAD], automatic implantable cardioverter defibrillator [AICD]), or when initiation of dialysis, bone-marrow transplantation, or solid-organ transplantation are being considered.

By building a collaborative relationship between the hospitalist team and consulting palliative care team, one can foster mutual learning to improve the care of the patient. Hospitalists can gain knowledge about the components of a palliative care consultation and continue their education and development of palliative care skills; palliative care clinicians can learn more about new approaches to care management for specific illnesses. Joint visits can help alleviate a patient’s fear of abandonment by the hospital team and provide a greater sense of support. Implementation of palliative care consult triggers at time of admission and palliative care team participation in interdisciplinary rounds with hospitalists are other potential areas of collaboration.

To improve access to palliative care, delivery models of specialized palliative care have been developed in the hospital beyond consultation care services. Increasingly, hospitals are opening inpatient palliative care units, which specialize in the management of severe to refractory symptoms and the delivery of medical-surgical hospital care in a combined fashion. These inpatient palliative care units can also provide an inpatient level of hospice care for eligible patients that choose to elect these services.

CARDIOPULMONARY RESUSCITATION (CPR) DISCUSSIONS

Discussions around preferences regarding cardiopulmonary resuscitation, often referred to as “code status discussions,” are frequently obtained early in the hospitalization, typically on the first day of admission. These sensitive conversations can be challenging, especially if there have been no prior discussion about the patient’s values and goals of care during past hospitalizations or in the outpatient setting. Patients and/or families may be unaware of how the increasing frequency of acute exacerbations of a chronic illness or the gradual decline in functional and nutritional status may signify a poorer prognosis. Moreover, a clinician’s desire to promote a patient’s self-determination and an institutional pressure “to get an answer” can lead to ineffective “procedure-focused” discussions that feel “scripted and depersonalized” to the patient, particularly if these conversations occur without context. Poorly-led conversations can lead to anxiety, misunderstanding and distrust in the patient-physician relationship and create unfertile ground for future communication.

Ideally, discussions about preferences in cardiopulmonary resuscitation are part of a larger advance care planning process and highlight the importance of patient-centered and family-centered care. Successful “CPR discussions” are not dependent on the outcome of the discussion but the process itself. These complex discussions involve the care team assessing the patient’s values and goals and sharing likely outcomes and recommendations, with the final ‘code status’ decision made jointly between the medical team and the patient and family.

• See Chapter 105 (Using Prognosis to Guide Treatment).

• See Chapter 215 (Communication Skills for End of Life Care).

GOALS OF CARE DISCUSSIONS

Hospitalists face challenges and barriers to goals of care discussions, which include patient and family difficulty in accepting a poor prognosis, poor understanding of the limitations and consequences of life-sustaining treatment, and a lack of clinician training on how to conduct these discussions. Learning how and when to elicit patient disclosures of emotional distress and explore such distress has been likened to a “delicate dance.” Navigating difficult conversations in the context of challenges in a patient’s illness and/or treatment and responding to the emotional reactions of patients and families is a skill set that requires practice and training.

• See Chapter 105 (Using Prognosis to Guide Treatment).

• See Chapter 215 (Communication Skills for End of Life Care).

CLINICAL PRACTICE OF PALLIATIVE CARE

The National Consensus Project (NCP) published initial guidelines in 2004 entitled “Clinical Practice Guidelines for Quality Palliative Care.” These guidelines directed the “development and structure of both new and existing palliative care teams; established uniform definitions of essential elements of palliative care, including generalized and specialty palliative care; established national goals for access to palliative care; promoted performance measurement and quality improvement initiatives in palliative care services; and fostered continuity of palliative care across settings, including home, hospital, and hospice.”

The key aspects of palliative care are divided into eight domains, including Structure and Processes of Care, Physical Aspects of Care, Psychological and Psychiatric Aspects of Care, Social Aspects of Care, Spiritual, Religious and Existential Aspects of Care, Cultural Aspects of Care, Care of the Patient at the End of Life, and Ethical and Legal Aspects of Care, based on the 3rd edition of the Clinical Practice Guidelines (2013). In 2006, the National Quality Forum developed the following guidelines to delineate the optimal practice of palliative care that corresponds to each of the eight domains:

DOMAIN 1: STRUCTURE AND PROCESSES OF CARE

Recommended practices include provision of palliative care by an interdisciplinary team and access to palliative care that is responsive to the patient and family that is 24 hours a day, 7 days a week.

For general processes of care, a care plan based on comprehensive interdisciplinary assessment of the values, preferences, goals, and needs of the patient and family is formulated, utilized, regularly reviewed, and communicated to all professionals involved in the patient’s care in a timely fashion. Upon transfer between health care settings, timely and thorough communication of a patient’s goals, preferences, values, and clinical information to ensure continuity of care and follow-up is recommended.

Health care professionals should begin discussing hospice as an option to all patient and families when death within a year would not be surprising, and reintroduce the hospice option as the patient declines with an estimated prognosis of less than 6 months. Furthermore, an assessment of a health care practitioner’s ability to discuss hospice as an option should be standard. By educating patients on the process of their disease, prognosis, and the benefits and burdens of potential interventions, health care practitioners can enable patients to make informed decisions about their care. Family support and education is also recommended to assure safe and appropriate care of the patient.

• See Chapter 105 (Using Prognosis to Guide Treatment).

• See Chapter 215 (Communication Skills for End of Life Care).

DOMAIN 2: PHYSICAL ASPECTS OF CARE

Assessment, measurement and documentation of pain, nausea/vomiting, dyspnea, constipation, and other symptoms is essential to quality palliative care and using available standardized scales is recommended. The assessment and management of symptoms and side effects in a timely, safe, and effective manner to a level acceptable to the patient and family is essential to providing quality care to patients with advanced serious illness. Palliative Care Fast Facts provide concise, peer-reviewed and evidence-based summaries on key palliative care topics, accessible at https://www.mypcnow.org/fast-facts/ or in the Journal of Palliative Medicine.

• See Chapter 80 (Constipation).

• See Chapter 85 (Dyspnea).

• See Chapter 96 (Sleep Disturbance in the Hospitalized Patient).

• See Chapter 97 (Nausea and Vomiting).

• See Chapter 99 (Pain).

• See Chapter 216 (Domains of Care: Physical Aspects of Care).

DOMAIN 3: PSYCHOLOGICAL AND PSYCHIATRIC ASPECTS OF CARE

As with physical aspects of care, the measurement and documentation of anxiety, depression, delirium, behavioral disturbances, and other common psychological symptoms is recommended using available standardized scales, with the assessment and management of these symptoms in a timely, safe and effective manner. In addition, addressing potential emotional and functional impairment and loss requires regular ongoing assessment and management of the psychological reactions of patients and families. This includes assessment for anticipatory grief, coping and stress. The development of a grief and bereavement care plan should occur prior to and after the death of a patient.

• See Chapter 166 (Agitation in Older Adults).

• See Chapter 216 (Domains of Care: Physical Aspects of Care).

• See Chapter 223 (Mood and Anxiety Disorders).

• See Chapter 228 (The Difficult Patient).

DOMAIN 4: SOCIAL ASPECTS OF CARE

Regular patient and family care conferences with physicians and other appropriate members of the interdisciplinary team is a recommended best practice to provide information, discuss goals of care, disease prognosis, advance care planning, and offer support. A comprehensive social care plan addresses the social, practical, and legal needs of the patient and caregivers, which include but is not limited to: relationships, communication, existing social and cultural networks, decision making, work and school settings, finances, ­sexuality/intimacy, caregiver availability/stress, and access to medicines and equipment.

• See Chapter 167 (Elder Mistreatment).

DOMAIN 5: SPIRITUAL, RELIGIOUS, AND EXISTENTIAL ASPECTS OF CARE

Beliefs surrounding illness and death are profoundly influenced by a patient’s and family’s religious and spiritual values. The salient spiritual needs of patients encompass questions of meaning, value, and relationship. Existential questions can include: What is the meaning of my life? How will I be remembered? Who do I need to forgive?

A plan based on an assessment of religious, spiritual, and existential concerns using a structured instrument is integral to the palliative care plan. The four-question FICA Spiritual History Tool is one such instrument to assess for spiritual needs and concerns (see Table 214-4). Patients and their family should be provided information about the availability of spiritual care services. Spiritual care should be made available through hospital chaplaincy, spiritual counseling or through the patient’s own clergy relationships. Specialized palliative care teams should include spiritual care professionals that are appropriately trained and certified in palliative care. These professionals help to build partnership with community clergy and provide education and counseling related to end-of-life care.

DOMAIN 6: CULTURAL ASPECTS OF CARE

Cultural assessment incorporated as a component of comprehensive palliative care assessment includes but is not limited to: locus of decision making including preferences regarding disclosure of information, truth telling and decision making; dietary preferences; language and interpreter preferences; family communication preferences; desire for support measures such as palliative and complementary and alternative medicines; perspectives on death, suffering, and grieving; and funeral/burial rituals. Professional interpreter services and culturally sensitive materials should be provided in the patient’s and family’s preferred language.

• See Chapter 37 (Cultural Competence).

DOMAIN 7: CARE OF PATIENT AT THE END OF LIFE

Health care practitioners should be able to recognize and document the transition to the active dying phase and communicate to the patient, family, and staff the expectation of imminent death. Families need education on a timely basis regarding the signs and symptoms of imminent death in a developmentally, culturally, and age-appropriate manner. As part of the ongoing care planning process, patient and family’s wishes about the care setting for the site of death, should be documented. During the active dying phase, adequate dosages of analgesics and sedatives as appropriate to achieve patient comfort is provided, with fears and concerns about use of narcotics and analgesics hastening death appropriately addressed. Postdeath, the body should be treated with respect according to the cultural and religious practices of the family and in accordance with local law. Effective grieving is facilitated by implementing a bereavement care plan in a timely manner after the patient’s death, with the family remaining as the focus of care.

• See Chapter 74 (Hospice).

• See Chapter 215 (Communication Skills for End of Life Care).

• See Chapter 217 (Care of the Dying Patient).

DOMAIN 8: ETHICAL AND LEGAL ASPECTS OF CARE

For advanced care planning, the designated surrogate/decision maker should be documented in accordance with state law, as well as the patient and surrogate preferences for goals of care, treatment options, and setting of care; documentation should occur at first assessment and at frequent intervals as a patient’s clinical condition changes. Advance care planning is a process that supports people in identifying personal values, in setting goals and plans with respect to future medical care, and in decision making over time. It brings together the individual, surrogates, families, and clinicians to develop a coherent care plan that aligns with the person’s goals, values, and preferences based on a shared understanding of the person’s evolving medical condition, prognosis, and potential future treatment options. When appropriate, conversion of the patient’s treatment goals into medical orders, with the completion of Physician Orders for Life-Sustaining Treatments (POLST) forms, will help to ensure that the information is transferable and applicable across care settings, including long-term care, emergency medical services, and between hospitals.

Advance care planning documentation, POLST forms, and surrogacy designations should be available across care settings. Community collaborations can help promote advance care planning and completion of advance directives for all individuals. When ethical conflicts arise at the end of life, ethics consultation should be available across care settings.

• See Chapter 33 (Common Indications for Ethics Consultation).

• See Chapter 34 (Advance Directives and Surrogate Decision Making).

QUALITY IMPROVEMENT

The development of standards and guidelines in palliative care continues at a steady pace. In 2012, the American Hospital Association issued two reports on advanced illness management strategies that stressed the importance of patient and family understanding of advance illness planning and management, encouraged education and training of all health professionals to provide care over the continuum of health and decline, and suggested hospitals and care systems to improve the support and delivery of care for patients with serious and terminal illnesses.

The Joint Commission currently has an Advanced Certification for Palliative Care for hospitals that “demonstrate exceptional patient- and family-centered care that optimizes the quality of life for patients with serious illness.” In 2015, the American Academy of Hospice and Palliative Medicine, in conjunction with the Hospice and Palliative Nurses Association, published 10 key quality indicators in palliative care as part of the Measuring What Matters project. Three criteria had to be met for each quality indicator, ensuring that each: (1) was meaningful for patient and families, (2) was able to be implemented by clinicians, and (3) can significantly improve the quality of care for patients and families (see Table 214-5).

Health care organizations are beginning to utilize palliative care more frequently to improve quality because it has been shown to be an effective approach to reducing symptoms and improving patient and family satisfaction. In addition, the use of palliative care services can improve transitions of care, support timely and successful discharge, avert unnecessary readmissions, and contribute to efficient use of health care resources. Many hospitals now use palliative care programs to help meet pain management and other quality accreditation standards.

CONCLUSION

Today’s hospitalist needs primary palliative care skills to provide quality care to patients with serious illness. Ongoing assessment and management of a patient’s physical, emotional, social, and spiritual well-being is essential, with the referral to expert-level palliative care and/or hospice for refractory symptoms and complex psychosocial needs. Hospitalists will need to demonstrate proficiency in initiating conversations about difficult treatment choices with patient and families, particularly when medical interventions no longer improve health or restore a quality of life that is acceptable to the patient.

SUGGESTED READINGS

INTRODUCTION

Palliative care requires excellent communication skills. Clinicians navigate difficult situations including prognostication, breaking bad news, discussing hospice, and planning for the end of life, while acknowledging and addressing physical, psychological and spiritual distress for both the patient and family. Before focusing on details for each of these situations, physicians must establish basic goals of care. Communication strategies may vary based on individual preferences of the patient and family, cultural norms, the context of the situation, and the patient’s stage of disease. The latter may be divided broadly into the time of diagnosis, the transition toward palliative care, and the time leading up to and including the patient’s death. This chapter will describe approaches to communication for situations that arise commonly in the treatment of patients with life-threatening illnesses.

GENERAL COMMUNICATION SKILLS

Communication skills are essential for all physicians, as they develop rapport, gather and relay information, and help patients make informed decisions. It is important to keep in mind that the parties involved often have divergent perspectives, stemming from diverse generational, educational, socioeconomic, cultural, and spiritual backgrounds, which can have a profound effect on physician-patient/family interactions. Thus, diverse viewpoints may coexist within any one seemingly similar group. For this reason, it is essential to elicit individual communication preferences, rather than assuming that these fall neatly into a specific category.

All clinical interactions have emotional as well as informational elements. The exploration of a patient’s previous experiences may add invaluable information or insight to the conversation, as certain experiences, such as having been a caregiver for a dying family member, increase the patient’s readiness to have his or her own end-of-life discussions. Effective communication requires that clinicians recognize their own emotions in addition to those of patients and families. Likewise, communication has verbal and nonverbal components and it is important to recognize and respond to nonverbal cues in addition to listening for verbal ones and eliciting concerns. Respect and empathy are paramount, and both can be expressed verbally or nonverbally in very little time. In contrast to entering a room looking at the chart instead of the patient, the simple gesture of making introductions to everyone present speaks volumes as one begins the clinical relationship.

COMMUNICATION PRACTICES

While each encounter between clinician, patient, and family will be unique, there are basic communication skills that may facilitate difficult conversations. Open-ended questions promote greater understanding and are used to start the “Ask-Tell-Ask” approach, which lends itself to almost any clinical interaction (Back et al, 2008). When first communicating with a patient about a particular issue, such as diagnosis or prognosis, start by asking what the patient understands about her illness. After assessing what the patient knows (and identifying and acknowledging any associated emotions), tell the patient any additional information and/or clarify misconceptions. Perhaps most importantly, follow-up by asking another question to both ensure that the patient understands and that you have understood the emotional impact on the patient. When in doubt, it is useful to ask, “Do you have any questions?”

While open-ended questions are often an excellent beginning to a conversation while developing rapport, they rarely provide responses that delve into more difficult topics such as disease progression, prognosis or death. Indirectness, linking questions, and hypothetical talk are communication practices that are commonly used in these situations (Parry et al, 2014). While indirect, allusive or euphemistic talk makes it easy for patients to deflect or avoid difficult topics, it allows clinicians to gauge whether a patient is ready to engage and may act as a first step to more direct discussions. For example, to begin by saying “The biopsy results were not what we hoped.” can gently open the door to further dialogue. To encourage communication about future issues, it is helpful to link questions with what patients have said or hinted at (eg, “You mentioned you were afraid of the future. Do you think it might help to plan for the worst case scenario, so that you don’t have to deal with that later?”). Hypothetical questions are also useful in this situation; for example, “I know it’s hard to think about, but say in the future you got so ill you couldn’t make decisions for yourself. Have you thought about who you would like to make decisions for you?”

As a means of encouraging patients to talk, it is often helpful for clinicians to leave gaps of silence once a difficult topic has been raised, and allow the patient to continue the dialogue. Such nonverbal communication strategies are often overlooked but may be the most effective at relaying empathy or sensitivity through the touch of a hand or the passing of a tissue. By simply providing delays or hesitations within the conversation, clinicians may convey the seriousness of the topic.

POTENTIAL BARRIERS TO COMMUNICATION

Potential barriers to communication include clinician, system or institution and patient-related factors (Bernacki et al, 2014). Many experienced clinicians struggle with a comfort level during ­end-of-life discussions and feel inadequately prepared to deal with their own or the patient’s emotional reaction. Communication skills training has been shown to be effective, and may use didactic approaches as well as standardized role-play. The benefit of mentorship and teachable moments in clinical situations should not be underestimated; observation of role models may be the first step in graduated comfort with difficult conversations. Both supervisors and trainees need to recognize their own limitations and comfort levels, with awareness that patients’ perceptions of their disease, their treatment decisions and the patient-physician relationship will depend on the way that bad news is communicated.

Patients’ emotions such as anxiety and denial are often described as affecting communication. It is important to identify patients with severe anxiety in order to offer counseling and support. While some clinicians avoid difficult subjects in an effort to limit anxiety, it is important to recognize that some level of anxiety is usual for patients with a life-threatening illness and that avoidance of end-of-life issues may limit the patient’s ability to plan for the future. Patients generally expect health care providers to initiate discussions about advance care planning and will not take the initiative themselves if clinicians are reluctant to broach the subject.

System barriers to communication include diffusion of responsibility or ambiguity of responsibility for difficult conversations. Patients may receive mixed messages from different members of the health care team, or may receive no information if the responsibility for discussions of future planning is unclear. Care may be optimized by choosing one member of the health care team who assumes primary responsibility for timely end-of-life discussions, and maintaining a unified message among the health care professionals who are involved. Consistent, clear written communication and documentation in health records of patient wishes and goals of care discussions is essential. The culture of life-sustaining treatment as a default or systematic underuse of palliative care services is an institutional barrier to end-of-life communication that will hopefully be overcome with increasing evidence for the effectiveness of early palliative care in improving quality of life and satisfaction with care (Zimmermann et al, 2014).

CLINICIAN-FAMILY COMMUNICATION

Although communication in medicine often involves the family as well as the patient, this is particularly the case in palliative care. In the last days to hours of life or in the situation of patients who are no longer competent, clinician-family communication becomes critical. Good physician-family communication requires awareness of the roles of various family members as well as an appreciation for the wide array of emotions and conflicts that may arise in difficult times. Poor communication resulting from an intention to protect the patient or family from bad news may have the opposite and negative impact of increasing family conflict. End-of-life conversations that include caregivers or bereaved family members allow dialogue about personal relationships and memories; facilitate planning for the future, and enable expressions of important thoughts and sentiments including gratitude, love, forgiveness, and farewell.

BREAKING BAD NEWS

The communication of bad news is initially difficult for both clinician and patient and emotions at the time may be uncomfortable for all parties. However, contrary to common fears, honest communication is not associated with subsequent psychological distress or hopelessness. Breaking bad news allows for discussion of goals of care and patient care consistent with such goals, while increasing quality of life for patients and caregivers. Therefore, timely discussions are encouraged. Although most studies regarding strategies for breaking bad news have focused on the time of diagnosis, there are various stages in the disease trajectory where these strategies may be useful. For patients with cancer, for example, this may include each successive time that the cancer progresses on a certain treatment, the news that no further chemotherapy is indicated, and the news that the prognosis is short. While each situation will be different, it is useful to develop a core communication strategy that can be tailored to the circumstances.

The SPIKES protocol is a practical method for breaking bad news at any stage of disease (Table 215-1, Baile et al, 2000). It is easy to use and applicable to almost any clinical communication situation. Addressing the patient’s emotions is typically the most difficult aspect for physicians. It is important for patients to feel that the emotional impact of the news is acknowledged; this can be achieved by the use of a simple statement such as “I know that this is very difficult news for you.” A mnemonic that is helpful in this regard is NURSE: Name the emotion, Understand and Respect the emotion, Support the patient, and Explore the emotion.

The dreaded phrase “nothing else can be done” is a fallacy and should not be used. In addition to supportive medical treatments, emotional and social supports can always be offered and are interventions in themselves. Indeed, one may argue that the physician-patient/family relationship is one of the most valuable components of therapy regardless of disease stage.

THE REQUEST TO WITHHOLD BAD NEWS

Requests to withhold bad news about a diagnosis or prognosis may come directly from the patient or, more often, from the family. In survey studies, most patients report a desire to know information about their disease and prognosis, even if it is bad news. If a family requests nondisclosure, one should attempt to identify possible reasons for this request and whether it reflects the desire of the patient. Reasons may range from cultural norms regarding family-based decisions, to beliefs that discussing a poor prognosis will make it come true or destroy a patient’s hope. At times the family is concerned about disclosure when in reality the patient already knows or would want to know if given the option.

According to the principle of autonomy, the patient should have the right to choose whether or not to be told information about his or her illness. Thus, the first step in communicating bad news is to assess how much information a patient would like to know. For patients who do not speak English, a translator should be present, rather than relying on the family for translation. Patients should be asked if they would like family or friends to be present during important discussions. Family meetings allow a shared awareness among all those affected by the illness, and allow family members to better understand the patient’s perspective should they eventually act as power of attorney. In the initial discussion, it is helpful to begin with an opening statement about information that is known to the patient, such as “As you know, we have performed a number of tests.” Further dialogue may proceed as follows: “Would you like to know detailed information about your illness, or are there aspects that you would prefer not to know?” If the patient requests the information, one may wish to add a confirmatory statement such as “I unfortunately have bad news for you. Would you like me to continue?”

The amount of information patients want may depend on social factors such as cultural background and level of assimilation, as well as individual factors such as not being ready to cope with the information. For the minority of patients who do not want to know their diagnosis and/or prognosis, one must respect this and try to understand their decision. Permission may then be obtained from the patient to discuss the situation and treatment plan with an appointed family member. It is important, however, to stress that disclosure to the patient may be necessary for informed consent for certain treatments and procedures. If there is conflict about disclosure, a hospital ethics consultation should be sought. Patients who do not want to know clinical information at a given time should be given the invitation to ask questions at any point in the future.

PROGNOSTIC DISCLOSURE

The question, “How long do I have Doctor?” is both difficult and important to answer, as it will help patients and families to prioritize and plan for the limited time ahead. Prognostication involves the discussion of the probable course and outcome of an illness. This is not limited to a discussion of the likely duration of survival, but includes discussion of the symptoms and situations that may occur as a result of the illness, and an explanation of the goals, benefits, and risks of possible treatments.

Communication of prognosis is central to patient education, and is necessary for informed consent and shared decision making. Patients may make different choices regarding investigations or active treatments if they are properly informed rather than relying on their own preconceptions. In the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), where explicit prognostic information was provided, patients were more likely to discuss advance directives and less likely to desire cardiopulmonary resuscitation (CPR) if they felt prognosis was “poor” (Covinsky et al, 2000). Disclosure of prognosis is important not only because it respects patient autonomy in terms of medical decisions, but also because it affords the patient and family an opportunity to fulfill plans such as attending a family member’s wedding, traveling to see friends or family, or saying goodbyes, and to deal with practical issues such as assigning power of attorney, making a will and preparing funeral arrangements.

Physicians are constantly formulating a prognosis when making treatment decisions, but often do not communicate this information explicitly to the patient. Although clinical predictions are often optimistic, physicians are generally able to identify patients with less than 3 to 6 months to live. Barriers to disclosing the prognosis may include a focus on diagnosis or treatment, lack of formal education around prognostication, lack of self-confidence, beliefs in a self-fulfilling prophecy, attempts to maintain patient hope, difficulty dealing with emotional issues, time constraints, and fear regarding medical-legal implications of predictions. Given the importance that patients place on timely and empathic disclosure of prognosis, it is important to be aware of these barriers so that they may be addressed.

There are many tools available to assist with prognostication. These range from performance status scales such as the Karnofsky performance status scale and Eastern Cooperative Oncology Group scale, to detailed tools incorporating information such as age, gender, performance status, comorbidity, symptoms, diagnosis, and laboratory results. For patients with cancer, visceral and brain metastases are poor prognostic factors, as are symptoms such as dyspnea, anorexia, and delirium, and laboratory values such as hypercalcemia, leukocytosis, and hypoalbuminemia. Although these tools are useful for clinicians in determining prognosis, they must be supplemented and individualized with clinical experience and knowledge (see Chapter 105 [Using Prognosis to Guide Treatment]).

Communication of the prognosis is not a one-time occurrence, but a dynamic process that continues on an ongoing basis throughout the disease trajectory. While the SPIKES protocol may be used as a general framework for communicating prognosis; specific guidelines are presented in Table 215-2. It is likely that the patient already has some perception of the prognosis, which may be based on conversations with other clinicians, friends, or on information from the Internet or other sources. Sometimes the patient has a sound understanding, and other times expectations appear to be entirely unrealistic. It is important to elicit and acknowledge the patient’s understanding of the situation as well as to gauge how much prognostic information she wants to know and to what level of detail. Some patients desire very little prognostic information and this should be respected provided that the goals of care are discussed and appropriate plans are made for the patient and family. Although some patients desire exact information, it should be emphasized that a prognosis is always an estimate and that the situation may change with time. Median survivals are just that and do not represent the outcome for every patient. Nonabandonment should be emphasized while developing an action plan and establishing goals of care.

ESTABLISHING GOALS OF CARE

The discussion of prognosis is inextricable from the discussion of goals of care. These should be readdressed frequently throughout the patient’s disease course and individualized based on the stage of disease and unique characteristics of the patient. An individual’s values will influence how they prioritize goals of care, and two patients with a similar prognosis may desire very different courses of treatment. For example, whether or not a patient will accept or decline life-prolonging treatment will depend on how he prioritizes the goals of prolonged duration of life compared with minimization of treatment side effects, symptom control, and quality of life. Illness may also change one’s perceptions and treatment preferences. One study found that patients with advanced cancer were more likely to accept second-line chemotherapy treatments with only slight potential benefit and substantial potential side effects, compared to what oncologists or healthy counterparts might imagine accepting in the patient’s situation (Balmer et al, 2001).

What physicians think they convey in terms of information is not always what the patient perceives. MacKillop and colleagues (1998) showed that while over 90% of physicians felt they had accurately conveyed the extent of disease and intent of treatment, almost one-third of patients with metastatic disease thought their disease was localized, and almost one-third of patients on palliative treatment thought the intent was curative. This may result from a misunderstanding of medical information: terms such as curable, controlled, or terminal disease need to be explained to avoid miscommunication. Other patients and families may understand the palliative nature of the medical treatment, but hope for a miracle or cure. It is important for clinicians to realize that such seemingly contradictory thinking is common and is a manner of coping with the illness. Often patients or families will ask several clinicians the same questions about prognosis; it is therefore important that all members of a clinical team are communicating the same information in a consistent fashion.

Many physicians are concerned about destroying hope when discussing goals of care in the context of poor prognosis. If the physician is honest in informing patients when they are passing through various stages of their disease, there is a wide spectrum of realistic hopes that patients may have depending on the situation, ranging from cure or prolonged life to finding meaning in life, quality of life, symptom control, spending time with loved ones, and dying peacefully with dignity. A clinical pearl of communication is “Hope for the best, prepare for the worst,” which acknowledges that hope can be sustained while also planning for the occurrence of clinical situations that may evolve quickly (Back et al, 2008).

END-OF-LIFE PLANNING DISCUSSIONS

Most patients in Western countries would like to be involved in their health care decisions. Although the focus of end-of-life discussions is often on code status or on planning for a crisis situation, there are many other decisions that need to be made. These include preferences about the extent of investigations, aggressiveness of treatment, hospice enrollment, place of death, organ donation, and religious rites to be performed prior to or after death. As important as what to do in the case of incompetence is how to proceed with care while the patient is competent and able. This requires that the patient understand the nature of the underlying illness and the consequences of treatment at any given time. For example, there is a time in the course of illness when treatment of hyperkalemia can be lifesaving and another when it will produce added suffering without appreciably increasing life expectancy. In order for discussions about end-of-life preferences to be effective, the patient needs to gain an appreciation for the extent of his or her underlying illness, and the physician needs to understand the cultural and individual preferences of the patient. Thus end-of-life discussions are always conversations, rather than information sessions.

ADVANCE DIRECTIVES

Advance directives provide an opportunity for patients to state their preferences for care while they are capable of doing so. The Patient Self Determination Act (PSDA) became effective in the United States in 1991, and requires that Medicare and Medicaid providers (eg, hospitals, nursing homes, and home health agencies) provide information to patients at the time of enrolment on their rights regarding advance directives. These include the right to participate in their health care decisions, the right to accept or refuse treatment, the right to prepare an advance directive, and the right to information on providers’ policies regarding these rights. Unlike other legally binding documents, advance directives can be completed without an attorney, which facilitates their implementation (see Chapter 34 [Advanced Directives and Surrogate Decision Making]).

Advance directives typically consist of a living will and the assignment of a substitute decision maker, or durable power of attorney, who will make decisions for a patient in the case of incompetence. Although the number of patients with completed advance directives has increased substantially since the passage of the PSDA, approximately half of all severely or terminally ill patients still lack advance directives. This may be due to a patient’s lack of understanding of his prognosis, a lack of awareness of the existence and process for completion of advance directives, or a perceived lack of relevance to the patient’s situation. Physicians should be honest with patients regarding their prognosis, inform them about the availability of advanced directives and their importance, and indicate their willingness to discuss any medical issues that arise during or after the completion of the advanced directive.

LIVING WILL

The living will states the patient’s preferences for care and serves not only to maintain patient autonomy, but also to minimize the burden of decision making on families faced with the emotionally charged situation of a loved one who is near death. Typically, the directive has instructions regarding whether or not life-sustaining treatment should be given, and may have specific directions regarding the use of CPR, mechanical ventilation, tube feeding, and use of antibiotics. In order for these directives to be meaningful, it is important to explain to patients what these various life-sustaining procedures are, and how they would or would not contribute to quality and/or quantity of life in the patient’s situation. Many patients do not inform their physicians that they have an advance directive or living will, and this needs to be specifically asked about, so that physicians can discuss patients’ answers and clarify any misinterpretations. As the patient’s situation changes, the living will may need to be updated.

DURABLE POWER OF ATTORNEY

Regardless of whether or not a living will is completed, it is important for patients to assign a durable power of attorney. If patients have not made such an assignment, the law in Canada and in certain areas of the United States outlines a hierarchy of substitute decision makers for patients who are incapacitated (Table 215-3). However, the first person on a hierarchy list may not be the one the patient would have chosen, and may not share similar view points or values. At times, a patient may want to protect his loved ones and prefers not to discuss his medical situation with them. This becomes problematic when a person who has not been involved in the care of the patient is later acting as a substitute decision maker. In addition, substitute decision makers may inaccurately predict the patient’s wishes (eg, believing that a patient would want more interventions than they actually would). For these reasons, it is useful for physicians to meet with patients and their assigned power of attorney to clarify wishes for care. The documentation of these wishes in the living will as well as in the patient’s chart can avoid misunderstandings and ensure that future care proceeds as the patient desires.

CODE STATUS

Studies have shown that physicians are concerned about futile interventions at the end of life, and that most patients want to be involved decisions about CPR. In a study focusing on American veterans who had died from cancer, families reported higher satisfaction with end-of-life care when the patient had a ­do-not-resuscitate (DNR) order at the time of death. However many physicians are uncomfortable initiating discussions about code status, and patients generally do not spontaneously ask about this subject. Although the majority of patients are competent when admitted to hospital, DNR orders are usually either not written at all, or written when the patient is no longer competent to make medical decisions. Discussions regarding code status therefore often occur with the family and with substitute decision makers rather than with patients themselves. Table 215-4 outlines a framework for these types of discussions. Family involvement at end-of-life is associated with higher likelihood of DNR order and palliative care consultation. While early advanced care planning is advisable for all patients with a life-threatening illness, patients without family or social support should be considered in particular need of early advance care planning (Sudore et al, 2014).

The approach to discussing code status is important and may dictate the outcome. If one approaches a code discussion with the question “Would you want everything done in the event of…” then most patients and family members understandably request a full code. Ideally, code status preferences are already indicated in a living will and it is important to ask on admission to hospital whether or not an advance directive exists. If so, then the advance directive should be reviewed and the patient’s preferences documented. If there is no advance directive, then a discussion needs to take place with the patient and/or power of attorney to review the patient’s underlying condition and overall prognosis, explain what is involved in CPR, and outline what the outcomes typically are for patients in a similar situation. Success rates of CPR are low with a chance of survival to hospital discharge of approximately 15%. Conditions such as metastatic cancer, renal failure, sepsis, or reduced performance status diminish the prognosis considerably. This may not be understood by patients or families, whose impression of the outcome of CPR may be founded on overly optimistic scenarios typically depicted in movies or on television.

At times, orders are written which are variations of the “full code” or DNR orders. This is not ideal as confusion may arise in the midst of a code when an order such as “chest compressions, and defibrillation but no intubation” exists. The actions taken at the time of a code are stepwise and often automatic, potentially resulting in unwanted interventions if DNR orders are not clear or if a variation on the order exists. Increasingly hospitals and other health care institutions have protocols regarding code status, including which exact order should be written. Conversely, one should not assume that because a DNR order exists, the patient does not desire any other therapeutic interventions. Specific treatments should be discussed in detail with the patient or substitute decision maker, so that a complete understanding can be reached of what is desired. This also serves to allay patients’ fears that their care will be inferior if a DNR order exists. Finally, it is important to emphasize that the patient will not be abandoned, and care will continue for pain and symptom management as well as support for the patient and family.

DISCUSSING HOSPICE AND PALLIATIVE CARE

Communicating the roles of hospice and palliative care to patients and families is a challenge in itself. When the hospice and palliative care movements were established in the 1960s and 1970s, the focus was mainly on care at the end of life. The role of palliative care has since broadened, as indicated by the most recent World Health Organization definition. Contemporary palliative care focuses on quality of life as well as dignity in death and is complementary to, not exclusive of, therapies directed at the underlying illness. Hospice is more limited, due to what is or is not covered by the Medicare hospice benefit. The Medicare hospice benefit was established in 1983 and is available to patients with a prognosis of 6 months or less and the desire to receive the benefits of hospice services while foregoing disease-directed treatment. Both palliative care and hospice employ an interdisciplinary approach with expertise from fields such as medicine, nursing, social work, physiotherapy, occupational therapy, and spiritual care, and provide support to both the patient and the family. Hospice also includes services such as homemakers, medications, supplies and equipment; care may occur at home or in a hospice facility, nursing home or hospital.

HOSPICE

Referrals to hospice typically occur very late, and only approximately one-third of Americans die under hospice care (Glare & Sinclair, 2008). This may be due to a lack of understanding of the prognosis on the part of the clinician or patient, and/or the lack of coverage by many hospices of costly services such as palliative chemotherapy, palliative radiation, and blood transfusions. For patients who are not willing to forego such treatments, the prognosis and goals of care should be clarified. If these are understood and a patient still refuses referral to hospice, then another option is simultaneous palliative care or a hospice bridge program, if available. The involvement of palliative care services prior to the discussion of hospice may help with the difficult communication issues that arise at this transition point. As with communicating other types of difficult news, it is important to acknowledge the emotional aspect of these discussions. Multiple discussions over time may be necessary before a patient will agree to a hospice referral.

PALLIATIVE CARE

While palliative care referrals can be placed at any time, early referral (eg, at the diagnosis of metastatic disease for patients with cancer) can optimize management of physical and psychological symptoms, link the patient with services that will be available in acute crises, and facilitate communication regarding end-of-life planning. Some patients are able to acknowledge their prognosis and are active participants in advance care planning. Such patients are generally appreciative of early referral to palliative care services, and may even initiate the referral themselves. For others who have difficulty coming to terms with their prognosis, explicit discussions about palliative care may not be possible; for these patients, the referral may be better introduced in terms of management of specific symptoms or as a “safety net” for dealing with future concerns. Paradoxically, it is often the latter group of patients who benefit most from specialized palliative care, as the palliative care team is able to support them through the psychological and physical distress that they are experiencing. It is important to emphasize to the patient that unlike hospice, palliative care is not restricted to those with a limited prognosis. Patients can and should receive palliative care support if needed for symptom control during disease-directed treatments such as chemotherapy.

COMMUNICATION IN THE LAST DAYS AND HOURS OF LIFE

In the last days and hours of life, the patient’s desire for information inevitably lessens compared to their need for emotional support. The family, on the other hand, requires a great deal of communication and information to prepare for the patient’s death. If possible, the family will need forewarning that death is imminent, to prepare emotionally as well as practically for issues such as time spent with the patient and preferences regarding religious or cultural practices. It is important to obtain contact information from loved ones who would like to be with the patient in their last days to hours, so that they can be informed when death is near. If feasible, arranging for more privacy at this time will help not only the patient and family but also surrounding patients.

Even in the last days and hours of life, some families find it difficult to accept that the end of life is near. If the patient is imminently dying, and the cause is irreversible, it is important to meet formally with the family to address any outstanding concerns and emphasize the goals of care. Once the patient and family have acknowledged that the prognosis is short and the goal of care is comfort, they will need explicit guidance regarding what to expect during the dying process. It is important to explain that patients will likely stop eating and drinking and that verbal communication will likely cease as sleep increases. The family may feel helpless at this point and will take comfort in knowing that they are helping simply with their presence or with small gestures such as assistance with the patient’s mouth care.

A pain-free and peaceful death is an obvious goal of palliative care, but bereavement care should not be overlooked. The family is integral to the therapeutic relationship throughout, and will retain memories of the patient’s illness, and of the day of death, long after their loved one has died. The support and preparation of the family by the health care team can make a large difference in rendering these memories as positive as possible.

CONCLUSION

Communication is important in any clinical discipline but particularly in palliative care, as the information conveyed often involves bad news and evokes emotions in all participants of the clinical interaction. These emotions need to be acknowledged and addressed with empathy in order for a therapeutic relationship to ensue. This is a stage when many important decisions are made, not only for palliative treatment and advance care planning, but also for personal projects and goals. Patients and families appreciate honest, open communication that leaves room for hope and promises nonabandonment. Although these discussions are often difficult, they are also meaningful and will have a lasting impact on all involved.

SUGGESTED READINGS

PAIN

INTRODUCTION

Studies of patient perspectives on end-of-life care consistently report pain control as a major priority. Nonetheless, the literature shows that many patients experience poor pain control. In one well-known study (SUPPORT trial: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments), approximately 40% of hospitalized patients experienced severe pain in the last 3 days before death.

When the focus of care is quality of life and comfort, any poorly controlled symptom should be treated urgently. Many patients already fear that pain will be an inevitable part of their disease process and that “nothing can be done.” Hospitalists play a vital role in correcting this misconception and ensuring that patients with advanced illnesses receive adequate pain control.

PATHOPHYSIOLOGY

Pain can be described as nociceptive or neuropathic in origin. In nociceptive pain, peripheral nociceptors in the skin, musculoskeletal system, or viscera detect noxious stimuli and send impulses via afferent A-delta or C fibers to the dorsal horn of the spine. These signals are transmitted through ascending spinothalamic tracts to the thalamus and then to the cortex. Neuropathic pain occurs when the peripheral or central nervous system itself suffers damage or develops pathologic changes in sensitization. Neuropathic pain is generally more difficult to control than nociceptive pain. In reality, however, any type of chronic pain can significantly alter the sensory pathways and cause pathologic activation of the nervous system even after the initial pain stimulus has dissipated. The mechanisms of activation are quite complex and can involve central sensitization pathways, including multiple neurotransmitters (substance P, amino acid ligands), receptors (mu opioid, neurokinin-1, N-methyl-D-aspartate [NMDA]), and intracellular pathways (nitric oxide, ­protein kinase C).

The patient ultimately experiences pain not just as a physical phenomenon, but as an emotional experience. The International Association for the Study of Pain (IASP) has defined pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. While it is unquestionably a sensation in part or parts of the body, it is always unpleasant and, therefore, an emotional experience.” Patients with life-threatening illness are especially vulnerable to emotional and cognitive factors that can influence their experience of pain.

EVALUATION

Assessment of pain begins with a thorough history, including location, onset, duration, intensity, quality, and aggravating or ameliorating factors. The evaluation should also include a history of any associated functional decline, a psychosocial assessment (including exploration of any associated fears and concerns about disease progression), and a careful physical exam. The clinician should formulate a differential diagnosis of the clinical etiology of pain, which may include processes unrelated to the patient’s known terminal disease. For example, chest pain in a patient with breast cancer could be due to bony metastases, postradiation skin changes, cardiac ischemia, pulmonary embolism, costochrondritis, or gastroesophageal reflux disease.

The clinician should also determine the type of pain a patient is experiencing, as this will guide the appropriate treatment strategy.

• Nociceptive pain can be categorized as somatic or visceral. Somatic pain includes skin, musculoskeletal, or bone pain. It may be described as sharp, constant, throbbing, aching, and exacerbated by movement. It is usually well localized. Unlike somatic pain, visceral pain is generally poorly localized and arises from injury to organs or the lining of body cavities. It may be described as cramping, aching, tearing, deep, or a pressure sensation. Examples of visceral pain include symptoms from bowel obstruction, cholecystitis, or cardiac ischemia.

• Neuropathic pain can result from injury to any part of the nervous system, such as the peripheral nerves or spinal cord. Examples include postherpetic neuralgia, radiation-related brachial plexus injury, post-thoracotomy pain, and phantom limb pain. Neuropathic pain is frequently described as burning, tingling, stabbing, electric, or shooting. It may also be described as aching. Physical findings may include allodynia, which is pain caused by a normally painless stimulus such as light touch. Neuropathic pain may also radiate.

• Some pathologic processes can cause a mixed pain syndrome with both nociceptive and neuropathic pain. One example is bone metastases to the spine, which may incite nociceptive, somatic bone pain as well as neuropathic pain from nerve root compression.

When a patient is unable to communicate, the clinician must then rely on the family or caregiver’s report and careful observation for nonverbal cues, such as guarding or grimacing with movement, to assess pain. One common misconception is that a patient who exhibits no physiologic signs of discomfort (such as tachycardia or hypertension) is unlikely to be experiencing pain. In fact, patients with chronic pain rarely show these signs of sympathetic arousal. These physiologic changes are more typically seen in acute pain, though even some patients with acute pain do not exhibit these signs.

Several pain scales have been developed to monitor pain intensity and efficacy of treatment (Figure 216-1). Some patients may have no difficulty with the numerical pain scale, whereas others find it easier to report simplified categories of mild, moderate, or severe pain. Patients with mild cognitive deficits may be able to utilize the Faces Pain Scale, which was originally developed for pediatric patients.

Diagnostic tests should be tailored appropriately to a patient’s overall goals of care. Generally, if a study has good potential to lead to therapies (such as radiation) that would enhance a patient’s comfort, then the study may be indicated even in the setting of advanced disease.

TREATMENT

General principles

The World Health Organization (WHO) has developed a well-known analgesic ladder that recommends nonopioid analgesics such as nonsteroidal anti-inflammatory drugs (NSAIDs) or acetaminophen for mild pain, with the addition of opioids for moderate and severe pain. The WHO ladder also recommends consideration of adjuvant therapies such as antidepressants and anticonvulsants at any level of pain if appropriate. One should keep in mind that many patients with terminal illness have at least moderate to severe pain and thus will need an opioid immediately in addition to nonopioid analgesics.

Medication choice should also be guided by the type of pain. Opioids are generally effective for nociceptive pain, including both somatic and visceral types. Somatic pain such as musculoskeletal or bone pain may also be quite responsive to NSAID therapy. Bone pain may require a combination of additional therapies including bisphosphonates, corticosteroids, calcitonin, or radiation therapy. Visceral pain from bowel obstruction may warrant an antisecretory agent such as a somatostatin analogue (octreotide) or an anticholinergic agent with antispasmotic activity (hyoscyamine, glycopyrrolate, scopolamine). Neuropathic pain is often less responsive to opioids and requires the addition of adjuvant medications. Table 216-1 shows common adjuvant medications for neuropathic pain.

The mainstays in neuropathic pain therapy include anticonvulsants (gabapentin, pregabalin) and antidepressants (tricyclic antidepressants, serotonin-norepinephrine reuptake inhibitors). Topical agents such as lidocaine and capsaicin can be helpful. Depending on the etiology of pain, second-line agents such as corticosteroids and autonomic drugs (clonidine, prazosin, terazosin) may have a role. NMDA receptor antagonists such as ketamine can be considered for intractable pain but would require administration by a pain specialist.

The side-effect profile may greatly influence one’s choice of pain medication. NSAIDs are not recommended for those with significant risk of renal compromise, including patients who are elderly or have chronic kidney disease. Patients with multiple myeloma and a normal creatinine still carry a substantial risk for renal failure with NSAIDs. NSAIDs may also be contraindicated in patients at risk for gastrointestinal bleed or those on concomitant blood-thinning agents. Tricyclic antidepressants should be used cautiously in the elderly due to anticholinergic side effects. Nortriptyline is well studied and is generally considered the best-tolerated tricyclic agent for the elderly, as it has the least anticholinergic activity. Opioids have some well-known side effects including constipation and sedation. However, because many patients with terminal illness will eventually need an opioid for adequate pain control, the clinician should become adept at dosing opioids and managing their side effects.

Opioid analgesics

Many clinicians have received little formal training in pain management and do not feel fully confident selecting and dosing opioids. This discomfort may be exacerbated by misconceptions about opioids on the part of both clinicians and patients. Opioids rarely cause respiratory depression when dosed appropriately for pain. Studies have shown that patients with underlying lung disease such as chronic obstructive pulmonary disease (COPD) can safely use opioids if dosed appropriately.

True opioid addiction is uncommon in terminally ill patients. Providers sometimes mistake behaviors like clock-watching or irritability as signs of addiction, but usually these are manifestations of an inadequate pain regimen. These apparent drug-seeking behaviors (termed pseudoaddiction) tend to cease when patients are given adequate doses at regular intervals.

Some patients and family members may not readily articulate their fears of opioid addiction. They may also worry that their disease is progressing or that they are “giving up” if they take opioids. Many patients directly associate morphine with dying. Clinicians should be attuned to these fears and educate their patients accordingly. It is also important to emphasize that pain medications will not advance one’s disease, and may in fact improve function by reducing pain.

Selecting an opioid

Commonly used opioids include morphine, oxycodone, hydromorphone, fentanyl, and methadone. For most patients being initiated on opioids, there is not a compelling reason to choose, for example, hydromorphone over morphine. For certain patient populations, however, the choice of opioid does matter. Patients with significant renal failure should generally avoid morphine. The metabolites of morphine can accumulate in renal failure and cause neurotoxic side effects including myoclonus and delirium. Fentanyl and methadone are the safest opioids to use in renal failure patients including those on dialysis. Hydromorphone and oxycodone may be used cautiously in those with mild to moderate renal failure, with consideration of a reduction in dose or decrease in frequency. Similarly, patients with liver failure may need dose and frequency adjustments, but it is not clear that one particular opioid is significantly safer than the others in this setting.

Methadone may be effective for patients with severe pain who have responded poorly to other opioids or who have developed intolerable side effects. In addition to its opioid receptor activity, methadone is also believed to act as an NMDA receptor antagonist. It has good bioavailability and no known active metabolites (thus accounting for its safety in renal failure). However, due to its long half-life and complexities in dosing, it should generally be initiated by clinicians with prior training or in consultation with a specialist.

Certain opioids are almost never recommended. Both meperidine and propoxyphene should be avoided because their metabolites can accumulate with repeated dosing and cause serious neurotoxicity such as seizures. Codeine should not be used for severe pain because it has a “ceiling effect” whereby further titration results only in increased side effects without improved pain relief. Furthermore, codeine must first be metabolized to morphine to provide analgesia, and approximately 10% of the population lacks the appropriate hepatic enzyme. These patients derive no benefit from codeine.

Principles of opioid dosing

Equianalgesic doses:

Different opioids have different potencies (ie, dose required to achieve a certain effect). Equianalgesic doses of two different opioids should achieve a similar degree of pain relief for most patients, although some patients may have idiosyncratic responses to different opioids due to genetically determined variations in metabolism. Table 216-2 shows equianalgesic doses of commonly used opioids. Looking at the table, morphine 10 mg intravenously should achieve similar pain relief as morphine 30 mg orally and oxycodone 20 mg orally. Misconceptions that “morphine does not work but hydromorphone does” may arise from a lack of knowledge of equianalgesic doses. A patient who finds no relief with morphine 4 mg intravenously but responds well to hydromorphone 1 mg intravenously may have in fact needed a higher dose of morphine (hydromorphone 1 mg intravenously is equianalgesic to approximately morphine 6.6 mg intravenously).

General opioid dosing guidelines:

• Table 216-3 lists reasonable starting doses and dosing intervals for moderate to severe pain in opioid-naïve patients.

• Figure 216-2 demonstrates opioid conversions using simple mathematical ratios.

• Many clinicians find it helpful to consult an opioid calculator program. One commonly used opioid calculator is available through Global RPh: www.globalrph.com/narcotic.cgi.

• When switching between different opioids, most experts recommend a 25% to 50% dose reduction after one has calculated the equianalgesic dose. This is to account for incomplete cross tolerance. A patient who has developed some tolerance to the old opioid may not have the same degree of tolerance to the new opioid. The dose reduction is intended to reduce the risk of undesired side effects.

• Patients with chronic pain will generally need a long-acting pain medication (eg, sustained-release oxycodone or morphine, fentanyl patch, or methadone), not just short-acting medications. Figure 216-2 demonstrates the initiation of a long-acting opioid in a patient with metastatic bone pain. If unable to use a long-­acting pain medication, chronic pain patients should at least receive a standing pain regimen with additional as-needed availability.

• Patients on sustained-release medications should also have a short-acting medication for breakthrough pain. Each dose of breakthrough opioid should be approximately 10% to 20% of the total daily requirement of the sustained-release opioid.

• If greater than three doses of breakthrough pain medications are needed in a 24-hour period, one may consider increasing the amount of sustained-release opioid. An appropriate increase would be 50% to 100% of the total amount used for breakthrough pain in 24 hours.

Acute pain crisis

Patients with terminal illness, particularly those with cancer, may suffer severe exacerbations of pain from bone metastases, pathologic fractures, bowel obstruction, or other manifestations of progressive disease. When a patient presents with severe, uncontrolled pain (7-10 intensity), this is considered an acute pain crisis or palliative care emergency. Clinicians should treat these symptoms aggressively while determining the underlying cause. The National Comprehensive Cancer Network has published guidelines for rapid titration of opioids to treat severe pain (Figures PAIN-4 and PAIN-5 in NCCN Clinical Practice Guidelines in Oncology: Adult Cancer Pain. To access: www.nccn.org/professionals/physician_gls/f_guidelines.asp).

Opioid infusions

Infusions can be useful in certain settings but require a good understanding of basic principles.

• Opioid infusions should be used only when there is a specific indication. They should not be automatically started in a dying patient who is “comfort care” unless the patient has symptoms of discomfort and has demonstrated an ongoing need for opioids.

• Patients who were previously on sustained-release oral regimens but are now unable to take pills (eg, surgery, bowel obstruction) will need another means of fulfilling their baseline opioid requirement. For most inpatients, an opioid infusion is appropriate. The total daily opioid requirements should be converted into intravenous morphine or hydromorphone equianalgesic units, then divided by 24 hours for an hourly infusion rate. Consider a 25% to 50% dose reduction for incomplete cross-tolerance if switching between opioids. Fentanyl patch (discussed later) may be an option for those without intravenous access, but it is not appropriate for acute pain due to the time required to reach peak effect.

• Patients with severe pain who have required multiple opioid doses to control their symptoms may also be potential candidates for an opioid infusion. The initial infusion rate should be calculated based on the prior total documented 24-hour needs, or if in an acute pain crisis, projected from their needs over the past 4 hours.

• Opioid infusion orders should not be written as broad ranges of “morphine 2 to 20 mg/h, titrate to comfort.” This type of order places the patient at risk for inappropriate titration of the infusion. Many clinicians do not realize that it takes at least 8 to 12 hours to achieve new steady-state blood levels of morphine or hydromorphone after a change in the basal infusion rate. If one simply continues titrating up an infusion in a symptomatic patient without administering as-needed boluses, this patient is at risk for undertreatment of symptoms in the immediate setting, as well as overdose in several hours once the opioid reaches a new steady state. Many experts therefore recommend that opioid infusions be written as a specific rate without any range, with an additional order for as-needed boluses, either nurse-administered or through patient-controlled analgesia (PCA).

• Bolus orders can be rapidly titrated for poorly controlled pain. Peak effect for morphine and hydromorphone boluses occurs within 15 to 30 minutes. If a particular bolus dose is inadequate, the dose can be safely increased every 15 to 30 minutes without needing to rapidly titrate up the basal infusion rate.

• The basal infusion rate should be reassessed every 8 hours but not more frequently. The infusion rate can be increased based on the amount of boluses required, but generally should not be increased by more than 100% at a time.

• When using an opioid infusion to treat a patient who is not at the final stages of illness, the clinician should be attuned to potential fears that the patient may be actively dying. Many people associate a “morphine drip” with dying.

• Seek the advice of a pain expert before starting an infusion for a patient who is opioid-naïve.

Patient-controlled analgesia

Patient-controlled analgesia (PCA) may be used for patients with significant pain who are alert and able to use the equipment appropriately. PCAs should not be used by patients who have delirium, dementia, or other cognitive deficits. Table 216-4 shows commonly used PCA doses and lockout intervals in opioid-naïve patients. Higher doses may be needed in patients who have previously been on opioids. PCA pumps can be programmed to deliver patient-controlled boluses, a basal infusion, or both, although opioid-naïve patients generally should not be started on a basal infusion without the advice of a pain expert.

Fentanyl patches

The fentanyl transdermal patch is another option for patients who cannot reliably take pills, but it is important to understand appropriate dosing and limitations of use:

• Equianalgesic dosing for the fentanyl patch compared with oral morphine appears earlier in this chapter (Table 216-2). Note that the commonly used fentanyl 25 mcg/h patch is equianalgesic to approximately 50 mg oral morphine per day. Elderly or opioid-naïve patients should not be initiated on the 25 mcg/h dose unless there is demonstrated need for this quantity of opioid. A 12 mcg/h patch is available for patients with lesser needs, but in general fentanyl patches should only be initiated in patients with chronic pain and well-documented opioid requirements.

• The patch can take greater than 24 hours to reach peak effect. It is not appropriate for acute pain or if frequent titration is needed.

• Fentanyl patches are not recommended for patients with significant cachexia. The patch requires subcutaneous fat for effective absorption and release of drug.

• Fentanyl patches generally should not be used in febrile patients, as the uptake of medication may increase with temperature and cause unexpected side effects (such as sedation) or poor analgesia if the patch runs out early.

COMPLICATIONS

Concerns about side effects from opioids often lead to undertreatment of pain. Clinicians should make it a priority to recognize and treat opioid-induced side effects.

Sedation

Many patients complain about mild sedation or “fogginess” when initiating opioids or immediately after dose titration, but the effect usually wanes after 2 to 7 days. If a patient complains of persistent symptoms and other causes of sedation have been ruled out (eg, other medications, metabolic disturbances, or central nervous system processes), one can consider several options:

• Reduce opioid dose (10%-25%) if pain symptoms allow. Consider adding nonopioid adjuvant pain medications to facilitate dose reduction.

• Rotate to another opioid.

• Add a psychostimulant such as methylphenidate, with a starting dose of 2.5 mg orally twice a day and titrate up to a maximum of 1 mg/kg/d in divided doses. Psychostimulants should be avoided in patients with significant anxiety, arrhythmias, delirium, or psychosis.

Nausea

Like sedation, opioid-induced nausea usually improves after the first week. This symptom is discussed in greater detail in the nausea section of this chapter. First-line therapies for opioid-induced nausea include dopamine antagonists such as prochlorperazine and haloperidol.

Constipation

Unlike other opioid side effects, constipation does not wane with time. Patients taking opioids should be given a standing bowel regimen. Even patients with regular bowel movements should have a bowel regimen in place to prevent future constipation. The combination of docusate sodium (stool softener) with senna (laxative) is one option. Many patients will need an additional laxative, such as polyethylene glycol or lactulose, to maintain regular bowel function. Methylnaltrexone, a selective opioid antagonist, can be considered for more severe cases of opioid-induced constipation that have not responded to laxatives and enemas. Unlike naloxone, methylnaltrexone does not cross the blood-brain barrier and provides effective relief of constipation without opioid withdrawal or reduction in analgesia. Methylnaltrexone can be given subcutaneously every other day as needed.

Delirium

Any mental status change in a patient taking opioids should be taken seriously. Delirium can cause a myriad of complications including patient and family distress, uncertainty in overall prognosis, injury, and a delay in discharge. Delirium can be particularly distressing because it compromises a patient’s sense of self. Patients may find this quite frightening, and families often struggle with a heightened sense of loss, feeling like they are losing their loved one even before death.

However, one should not automatically blame opioids for every new mental status change, especially if a patient has been on a stable dose for some time. Workup for delirium should include an evaluation for other reversible causes, including other medications, infection, central nervous system disease, hypoxemia, metabolic/electrolyte disorders, and renal or liver failure.

If the delirium ultimately seems attributable to opioids but the patient needs continued pain control, consider the following options:

• Reduce opioid dose (10%-25%) if pain symptoms allow. Use nonopioid adjuvants if needed.

• Treat concurrently with an antipsychotic such as haloperidol or olanzapine.

• Rotate to a different opioid.

• Use nonpharmacologic strategies, including environmental cues for day and night, glasses and hearing aids, and family presence.

Neurotoxicity

Patients on chronic opioids can develop neurotoxic side effects from opioid metabolites, especially in the setting of high opioid doses, dehydration, or renal failure. Myoclonus is a common manifestation of this neuroexcitatory state. Symptoms may be mild, such as an occasional jerking of extremities, but with continued opioid administration patients may develop frequent twitching of muscle groups in the extremities and face. Other signs of neurotoxicity include delirium, hyperalgesia (increased sensitivity to pain), and allodynia (pain from non-noxious stimuli). In severe neurotoxicity, patients may even develop generalized seizures. Hyperalgesia is particularly confusing because clinicians may mistake this as worsened pain from an underlying disease process. Further opioid escalation actually worsens the hyperalgesia.

Treatment strategy depends on both the severity of symptoms and overall prognosis. In an imminently dying patient with mild myoclonus, it may be appropriate to simply monitor the patient for any worsening symptoms. For patients with ongoing need for opioids and concerning manifestations of neurotoxicity, consider several strategies:

• Reduce opioid dose (10%-25%) if neurotoxic symptoms are mild (only occasional myoclonus). Consider adding nonopioid adjuvant pain medications to facilitate opioid dose reduction.

• Rotate to another opioid if there are signs of significant neuroexcitation, including myoclonus, allodynia/hyperalgesia, delirium, or hallucinations. The new opioid should be initiated at 25% of the equianalgesic dose. Methadone and fentanyl are particularly good options in severe neurotoxicity because they do not have active metabolites. Clinicians without specific training in pain management should consult an expert for any cases of significant neurotoxicity and when initiating methadone or fentanyl, due to complexities of dosing in this setting.

• Add medications to reduce myoclonus. Options include benzodiazepines (lorazepam, clonazepam, midazolam) and muscle relaxants (baclofen, nifedipine).

Respiratory depression

Though respiratory depression remains a commonly feared side effect, clinically significant respiratory depression is actually quite rare when opioids are dosed appropriately. Respiratory depression is a late effect, and patients should exhibit signs of somnolence before their respiratory function is compromised. Naloxone should be reserved for those with life-threatening respiratory depression. To prevent sudden reversal of analgesia (and almost certain pain crisis), an incremental dosing approach is recommended. Mix 0.4 mg (1 mL ampule) of naloxone into 9 mL of saline to make a diluted 0.04 mg/mL naloxone solution. Administer 1 to 2 mL of this diluted solution intravenously approximately every 1 to 2 minutes until respiratory depression resolves. Repeated doses may be necessary due to the short duration of naloxone, and a continuous infusion may be required if the patient was on long-acting opioids.

DISCHARGE CHECKLIST

• Does the patient understand how to use pain medications appropriately, including the difference between long-acting and breakthrough medications? Create a written pain management plan, review it with the patient and family members, and confirm that they know who to contact for uncontrolled symptoms.

• Is your patient on a standing bowel regimen to prevent opioid-induced constipation?

• Is the responsible outpatient clinician aware that you have initiated opioids or changed doses during this hospitalization? Has the outpatient provider agreed to continue writing for these controlled substances?

• Have you communicated with the case manager and home care agency (visiting nurse agency, hospice agency) about the current pain medication plan? Have you considered a contingency plan if the patient is no longer able to take oral medications?

NAUSEA

INTRODUCTION

Symptoms of nausea and vomiting are common in patients with advanced illnesses, including cancer, congestive heart failure, end-stage renal disease, and AIDS. For patients and families facing a life-threatening illness, nausea and vomiting can cause substantial distress due to concerns about maintaining adequate nutrition and worries that these symptoms indicate disease progression.

EVALUATION

Evaluation should include a thorough history and physical exam, with careful attention to common causes of nausea in the terminally ill, including medications (chemotherapy, opioids), constipation, electrolyte abnormalities, liver and kidney failure, radiation therapy, central nervous system lesions, bowel obstruction, and anxiety. It is important to try to identify the likely mechanism or pathway responsible for a patient’s nausea, as this can guide the therapeutic approach.

Nausea and vomiting can be triggered by activation of any of four general pathways:

• Cortex: Activation can occur due to meningeal irritation, increased intracranial pressure, or cognitive/emotional factors such as anxiety.

• Chemoreceptor trigger zone: This area is located in the floor of the fourth ventricle and lacks a blood-brain barrier. It is easily activated by metabolic abnormalities, toxins, and medications present in the cerebrospinal fluid (CSF). Activation of the chemoreceptor trigger zone is mediated primarily by the dopamine (D2) receptor, but others include neurokinin-1 (NK1) and serotonin (5HT3).

• Vestibular system: Motion or inner ear disease can activate the vestibular apparatus via histamine (H1) and muscarinic acetylcholine (ACh) receptors.

• Peripheral pathways: Activation can occur through mechanoreceptors and chemoreceptors in the gastrointestinal tract and heart, as well as 5HT3 receptors in the gastrointestinal tract. These signals are then transmitted along afferent tracts including the vagus, glossopharyngeal, splanchnic, and sympathetic nerves.

Each of these four pathways can then activate the vomiting center, a specific area of the medulla that coordinates the final act of vomiting via the parasympathetic system and gastrointestinal tract. Activation of the vomiting center is believed to be mediated by H1 receptors or muscarinic ACh receptors.

INPATIENT MANAGEMENT

Nonpharmacologic treatment

Nonpharmacologic strategies may be helpful for many patients. Patients should avoid strong smells and eat small, frequent meals as they are able. Relaxation techniques may be useful for patients with significant anxiety or anticipatory nausea (nausea that occurs prior to chemotherapy sessions due to a conditioned response). Acupuncture appears to be helpful for chemotherapy-related nausea and vomiting. Although further research is needed, there have been a few randomized controlled trials demonstrating that acupuncture-point stimulation reduces the incidence of acute chemotherapy-induced vomiting.

Pharmacologic treatment

Most patients with nausea or vomiting will need some type of pharmacologic therapy. Table 216-5 shows common clinical etiologies of nausea and recommended first-line pharmacologic therapies based on likely mechanisms and receptors. Table 216-6 lists common antiemetics, doses, and side effects.

Opioid-induced nausea

Opioid-induced nausea warrants further discussion because it is particularly common and troublesome in this population. Opioids cause nausea through multiple mechanisms, including decreased gut motility (constipation, gastroparesis), stimulation of the chemoreceptor trigger zone via dopamine receptors, and enhanced vestibular sensitivity. Symptoms of opioid-induced nausea usually improve after the first week of opioid use. One strategy is to use a dopamine antagonist such as prochlorperazine, haloperidol, or metoclopramide on a scheduled basis for several days. The antiemetic may be subsequently be tapered as the patient develops tolerance to the opioid side effects. Another effective agent is olanzapine, which has mixed dopamine, acetylcholine, histamine, and serotonin activities. Patients with persistent nausea may require an opioid dose reduction (10%-20%) or rotation to another opioid. Patients taking opioids should be on a scheduled bowel regimen to prevent constipation.

Malignant bowel obstruction

Malignant bowel obstruction is a common complication in patients with advanced abdominal and pelvic malignancies. In patients who are not surgical candidates, medical management should include several concurrent mechanical and pharmacologic strategies:

• Pain control is a priority and generally requires the use of opioids.

• Decompression with a nasogastric tube may provide rapid relief of nausea and abdominal distension. A percutaneous gastrostomy tube may be considered in patients with persistent obstruction since patients can be transitioned home with a gastrostomy tube in place.

• Patients should be given a scheduled antiemetic to relieve associated nausea. Metoclopramide is recommended for patients with partial obstruction, but it should be discontinued if the patient develops worsened abdominal pain or cramping. It should not be used in patients with complete bowel obstruction. Haloperidol may be used for nausea in patients with complete obstruction or those with symptoms of colic. Dexamethasone 4 mg orally or intravenously two to three times a day may be useful for both its antiemetic and anti-inflammatory properties, including treating tumor-associated inflammation and potentially reducing the obstruction.

• Anticholinergic agents may be helpful for reducing abdominal distension and cramping. Hyoscyamine can be given 0.125 to 0.25 mg sublingually four times a day or scopolamine can be administered through a patch.

• Octreotide is a somatostatin analogue that inhibits motility and reduces gastrointestinal secretions. It can be administered subcutaneously 50 to 150 mcg three times a day. Patients who respond well to subcutaneous octreotide may be candidates for a monthly depot injection of octreotide for longer-term palliation of bowel obstruction.

• Studies have demonstrated successful symptom management of malignant bowel obstruction using a combined regimen of metoclopramide, octreotide, and dexamethasone, including the recovery of bowel transit in some patients with partial obstruction.

COMPLICATIONS

Antiemetics may cause a number of side effects. Sedation is common with antihistamines and neuroleptic agents, including dopamine antagonists and atypical antipsychotics. Sedation may be a desired effect for some patients nearing the end of life, but a dose adjustment or medication change may be necessary for patients who find this problematic. Almost all classes of antiemetics can cause delirium, including antihistamines, benzodiazepines, anticholinergics, corticosteroids, and cannabinoids. The elderly are especially vulnerable and should be monitored closely. Patients on dopamine antagonists may develop extrapyramidal symptoms such as akathisia and dystonia. Management includes treatment with diphenhydramine or benztropine and discontinuation of the offending agent. Serotonin antagonists such as ondansetron may cause constipation and patients may need prophylactic laxatives. Clinicians should also be aware that many antiemetics (such as haloperidol, metoclopramide, ondansetron) may prolong the QT interval. EKG monitoring may be warranted, depending upon the patient’s clinical situation and overall goals of care.

Patients with persistent nausea and vomiting often develop dehydration and electrolyte disturbances, which can further exacerbate symptoms of nausea. It may be reasonable to consider intravenous hydration, even in patients with a limited prognosis, with the goal of relieving symptoms. Consider referring patients with persistent bowel obstruction for surgical evaluation, depending on the stage of illness and overall prognosis. Additionally, patients and families may struggle with news that disease-­modifying therapies (such as chemotherapy) are no longer possible due to intractable symptoms, poor functional status, or advanced disease. Their psychosocial distress should be addressed with the assistance of the primary outpatient clinician, palliative care clinician, social worker, or chaplain.

DYSPNEA

INTRODUCTION

Dyspnea, defined as the subjective experience of difficult or uncomfortable breathing, is a very common and distressing symptom for patients. Dyspnea has been reported in up to 78% of cancer patients, 70% of patients with congestive heart failure, 70% of patients with dementia, 56% of COPD patients, and 62% of patients with AIDS. Of note, studies show that patients with higher dyspnea scores report decreased quality of life indices. Despite its prevalence and impact on quality of life, dyspnea often goes untreated. One study reported that over 60% of patients with advanced cancer had dyspnea for greater than 3 months, yet most had not received any treatment for their symptoms.

PATHOPHYSIOLOGY

The pathophysiology of dyspnea is complex and not yet fully understood. The respiratory center, located in the medulla and pons, coordinates the movements of the diaphragm and chest wall muscles during breathing. The respiratory center receives sensory input from several sources, including pulmonary vagal afferents, peripheral and medullary chemoreceptors, and peripheral mechanoreceptors from respiratory muscles and joints. The pulmonary vagal afferents include pulmonary stretch receptors, alveolar C fibers that respond to interstitial and capillary pressure, and pulmonary irritant receptors.

Several mechanisms appear to trigger the sensation of dyspnea:

• Increased work of breathing: This can be caused by increased airway resistance, such as in COPD or asthma, or weakened musculature, as occurs in neurodegenerative disorders or severe cachexia.

• Chemoreceptor activity: Receptors in the medulla primarily detect hypercapnia, and those in the carotid and aortic bodies detect hypoxemia. Hypercapnia appears to have a greater role in triggering dyspnea than hypoxemia.

• Neuromechanical dissociation: Researchers have described an important relationship between the brain’s efferent motor output for respiration and the afferent information it receives in response to these efforts. Dyspnea can occur when there is a mismatch, or neuromechanical dissociation, between what the brain desires from respiration and the sensory feedback from pulmonary vagal afferents and peripheral mechanoreceptors. A patient with amyotrophic lateral sclerosis (ALS) may experience dyspnea because the brain is not receiving the expected feedback in chest wall expansion. In another example, normal subjects became dyspneic when researchers limited the inspiratory flow rate despite no change in respiratory work or oxygenation status.

EVALUATION

The gold standard for diagnosis is always the patient’s report of symptoms. Studies have demonstrated that there is no clear correlation between symptoms of dyspnea and respiratory rate, oxygen saturation, and accessory muscle use. Interestingly, some patients feel dyspneic despite normal oxygen saturations, while others do not feel dyspneic even though they are hypoxemic. It is therefore important to screen all patients for dyspnea, since patients may have no obvious signs of respiratory compromise or distress.

Common etiologies should be considered, including pneumonia, pleural effusion, space-occupying lung lesions, bronchospasm, pulmonary embolism, COPD, cardiac ischemia, congestive heart failure, anemia, and ascites. Patients with cancer may also have disease-specific processes such as radiation or chemotherapy-induced pneumonitis, malignant pericardial effusion, superior vena cava syndrome, or lymphangitic spread of tumor. Patients with primary neurologic or neuromuscular disorders may have symptoms of dyspnea associated with progressive muscle weakness.

The decision of whether to pursue diagnostic studies should take into account the patient’s overall goals of care, disease trajectory, and the likelihood that the study results will enhance management of dyspnea symptoms. For some patients, workup to rule out pneumonia, pleural effusion, or pulmonary embolism may still be appropriate as there are specific treatments that can help their symptoms. Sometimes no clear etiology for dyspnea can be found. The National Hospice Study, which followed terminal cancer patients during their last 6 weeks of life, found that 24% of patients with dyspnea had no signs of lung involvement or cardiac disease.

INPATIENT MANAGEMENT

Treatment of dyspnea should be directed at the etiology, if known. Patients with advanced illness may still be considered candidates for procedures like thoracentesis for a large pleural effusion and pleural catheter for recurrent effusions. The ultimate goal in all cases should be the subjective relief of symptoms rather than the correction of any single parameter, such as oxygen saturation or respiratory rate. Patients may need further nonpharmacologic and pharmacologic therapies if treatment of the underlying etiology of dyspnea does not fully relieve their symptoms.

Nonpharmacologic treatment

Placing patients in an upright position improves the mechanics of the intercostal muscles and lessens the work of breathing. A cool fan or moist cloth over the face can improve symptoms, possibly through stimulation of the V2 branch of the trigeminal nerve, which may then inhibit dyspnea perception centrally. The presence of a family member or volunteer at the bedside can help relieve anxiety associated with dyspnea. Cognitive and behavioral interventions, similar to those used in pulmonary rehabilitation for COPD patients, can also improve symptoms of dyspnea. Several trials of nursing-led interventions, which included relaxation techniques, breathing control, activity pacing, and psychosocial support, demonstrated a reduction in dyspnea scores.

Oxygen is frequently used in patients with dyspnea, though evidence to support its use is mixed. There is strong evidence to support oxygen use in COPD patients, for both symptomatic relief and improved survival. However, the role of oxygen in cancer patients with dyspnea is less clear. A meta-analysis of cancer-related dyspnea did not demonstrate any clear symptom improvement with oxygen compared to air. In the palliative care population, a trial of supplemental oxygen seems reasonable if the patient has had insufficient relief with other approaches. The potential benefits and risks of oxygen therapy should be considered before discharging a patient with home oxygen. Considerations include the degree of symptom relief, the risk of falls with tubing, and the presence of smokers in the home.

Pharmacologic treatment

Opioids

Opioids are the first-line agents in pharmacologic therapy for dyspnea near the end of life. Their exact mechanism is not fully understood, but opioids are believed to decrease the chemoreceptor response to hypercapnia and increase preload through cardiovascular vasodilation. Opioids have been shown to reduce dyspnea in patients with advanced cancer, congestive heart failure, and COPD, and can also increase exercise tolerance in patients with COPD and congestive heart failure. Doses required to control dyspnea are usually lower than those required for pain (Table 216-7). A reasonable starting dose of morphine for an opioid-naïve patient is morphine 1 to 2 mg intravenously every 2 hours or 2 to 5 mg orally every 4 hours. For patients already on opioids for pain, consider a 25% increase in their usual opioid dose to treat dyspnea. Other opioids such as hydromorphone and oxycodone can be used. There is no evidence to suggest any substantial differences in efficacy between opioids in the treatment of dyspnea. Patients who require frequent opioid doses may need initiation of either long-acting opioids or an opioid infusion. Principles for ordering and titrating infusions can be found in the section on pain management.

Anxiolytics

Dyspnea can be closely associated with anxiety, with each symptom exacerbating the other. Anxiolytics may be a helpful adjunct to opioids for treating dyspnea (Table 216-8). Lorazepam can offer rapid relief and is available in oral concentrate form. Clonazepam can be beneficial for chronic dyspnea due to its longer half-life. One trial has shown that midazolam can improve dyspnea control when added to a morphine regimen, though in practice its use is generally reserved for severe symptoms. Midazolam can be given 0.2 to 0.5 mg intravenously slowly for severe dyspnea or for refractory symptoms of panic or anxiety.

COMPLICATIONS

Respiratory depression

Some clinicians or patients may be hesitant to use opioids due to fears that they will cause respiratory depression and hasten death. These fears are largely unfounded. Many studies have shown that opioids improve dyspnea without compromising respiratory function when dosed appropriately. One meta-analysis that included COPD, congestive heart failure, cancer, and interstitial lung disease patients reported statistically significant improvement in dyspnea with no deaths attributable to opioids. It is also important to recognize that major changes in respiratory status such as apnea or periodic breathing may be indicative of imminent death from natural disease progression, rather than opioid-induced.

In the rare instance of respiratory depression due to accidental opioid overdose, naloxone can be used, but it should be diluted to avoid complete reversal of analgesia in palliative care patients. One ampule (0.4 mg in 1 mL) should be diluted with 9 mL saline to create a 0.04 mg/mL solution and then given in 1 mL doses every 1 to 2 minutes until respiratory depression is reversed. Further doses may be needed if long-acting opioids were used. If the only manifestation of opioid overdose is somnolence with intact respiratory function, naloxone should not be given and the patient should just be monitored closely.

SECRETIONS

EVALUATION AND MANAGEMENT

As their level of consciousness diminishes, many dying patients lose the ability to clear oropharyngeal secretions and develop noisy respirations, also known as the “death rattle.” Some family members and providers may find the noise distressing, though patients are generally obtunded and are thought to be undisturbed by it.

Management strategies include placing the patient in a lateral or semiprone position to promote drainage of secretions. Gentle suctioning may be helpful for secretions that are easily accessible, but deep suctioning is generally ineffective and may cause discomfort to the patient. Intravenous fluids can increase the production of secretions and should be minimized or discontinued.

Anticholinergic agents are often used in an attempt to reduce oropharyngeal secretions, though studies have not shown any clear benefit. Table 216-9 lists commonly used agents. Anticholinergics may cause significant side effects including sedation, delirium, urinary retention, constipation, and dry mouth. Patients receiving anticholinergic agents should receive scheduled mouth care including lip balm and mouth swabs.

Noisy secretions may be difficult to control despite the above interventions, and family education is paramount to minimize emotional distress. Clinicians should explain that as patients become less alert, the oropharyngeal muscles relax and patients are no longer able to swallow secretions. The loud respirations occur when air moves past the pooled secretions and relaxed muscles. Some family members may need reassurance that the patient is receiving adequate air and that this is not a sign of drowning. It is especially important to emphasize that these symptoms are normal and an expected part of the dying process.

TERMINAL DELIRIUM

EVALUATION AND TREATMENT

Nearly half of all dying patients will display signs of restlessness or agitation in their last days of life due to delirium. Symptoms include grimacing, moaning, mumbling speech, hallucinations, twitching or jerking, and changes in the level of arousal. Because delirium is common in hospitalized patients both with and without terminal illness, it is important to recognize other physiologic signs that may indicate a patient is in the dying phase. Manifestations can include decreased perfusion with cool extremities or cyanosis, tachycardia or bradycardia, hypotension, respiratory changes such as Cheyne-Stokes breathing or apnea, decreased urine output, and progressive somnolence.

Many of the general principles of delirium assessment and treatment still apply in the dying patient. Medications such as anticholinergic drugs (antiemetics, antisecretion agents, tricyclic antidepressants), opioids, sedatives, and corticosteroids are common precipitants for delirium in this population. The offending medications should be discontinued or weaned if possible, keeping in mind that delirious patients should not be left with undertreated pain, dyspnea, or other symptoms. Certain drugs such as opioids may need to be rotated (ie, a patient with severe renal insufficiency and signs of opioid neurotoxicity from morphine may need to be rotated to fentanyl or methadone). Other common and reversible causes of delirium include untreated pain, full bladder, or fecal impaction. If a patient appears to be nearing the end of life, it is often appropriate to forgo a full evaluation of delirium and transition instead to comfort-focused care.

Nonpharmacologic interventions for delirium may be helpful, including family presence at the bedside, gentle reminders to help with reorientation, hearing or visual devices, and psychosocial/spiritual support. Antipsychotic medications are the primary pharmacologic treatment for terminal delirium. Common medications are listed in Table 216-10. Antipsychotics can cause varying levels of sedation, with haloperidol causing the least sedation and chlorpromazine causing the most sedation.

Most clinicians recognize that benzodiazepines are generally discouraged in delirious patients due to the potential for paradoxical worsening of symptoms and agitation. One exception is the dying patient with significant agitation despite treatment with strong doses of antipsychotic medications. In this situation, benzodiazepines may be added for their sedative effect. Lorazepam can be given 0.5 to 2 mg intravenously, orally, or subcutaneously every 2 hours as needed. Diazepam is available rectally and can be given 10 mg rectally 6 hours. If these measures prove ineffective, consider contacting a palliative care specialist to discuss the possibility of further sedating medications.

NUTRITION AND HYDRATION

INTRODUCTION

Patients and families can experience tremendous emotional distress when nutritional issues arise. For many, nutrition may become a symbolic battleground of the fight against death. Many families express their love through food. When patients do not eat, well-intentioned family members may struggle with feelings of rejection or fear that their loved one has “given up.” Clinicians are sometimes pressed with questions about artificial nutrition and hydration (ANH) in the setting of advanced illness.

ANOREXIA-CACHEXIA SYNDROME

Patients may show signs of anorexia-cachexia, a complex wasting syndrome mediated by cytokine and neurohormonal factors. This syndrome is well recognized in cancer and AIDS patients, but is also seen in patients with advanced chronic illnesses such as congestive heart failure and COPD. It is important to explain to patients that this decline is a natural part of the disease process and not due to any deficiency on their part. Patients or family members may focus on weight loss as a sign that they have not done enough to ensure adequate calories. Although patients appear malnourished, this catabolic condition is generally not reversible even with aggressive nutrition.

Clinicians should screen for treatable causes of poor intake that may masquerade as anorexia-cachexia. These conditions include oral mucositis or candidiasis, esophagitis, reflux disease, gastro­intestinal dysmotility, constipation, nausea, chronic pain, or depression. If a reversible cause for anorexia is not found, management of the anorexia-cachexia syndrome includes behavioral and pharmacologic strategies.

Referral to a nutritionist may provide guidance to patients and families. Patients should be empowered to determine their own eating habits, including eating the foods that are most appealing and deciding the quantity and frequency of intake. Patients who are easily nauseated or have early satiety should eat small portions only as they are able. Families should be advised to refrain from any comments and behavior that pressure the patient to consume more. Patients can liberalize dietary restrictions, including those that were previously important for management of long-standing conditions such as diabetes or hyperlipidemia, provided that doing so will not cause uncomfortable symptoms such as edema. Some patients and family members may need tremendous support and education as they make this transition. Many have spent years doing everything “right” to fight their illness, maintaining their caloric intake, eating specific foods while undergoing chemotherapy, or carefully adhering to a diabetic diet. Patients and family members may find themselves having to acknowledge for the first time that the disease is advancing and incurable. Clinicians should be attuned to these psychosocial concerns and may need to facilitate appropriate support systems for their patients, such as social work, chaplaincy, palliative care, and hospice.

Patients or family members may ask if there is a role for appetite stimulants. Pharmacologic agents can be considered, but appetite stimulants have demonstrated only modest or limited benefit at best, and all have certain contraindications and side effects. Before starting an agent, it is important to discuss specific goals (such as a small amount of weight gain or increased appetite) and a clear timeframe in which to assess whether the goals are being met. If there is no obvious benefit after 2 or 3 weeks, the drug should be discontinued. Table 216-11 lists common appetite stimulants and doses. These include the following:

• Megestrol acetate (Megace) is a synthetic progestational agent that has been shown to increase appetite and weight in randomized control trials of patients with cancer and AIDS. Weight gain manifests as increased fat stores but not lean muscle mass. The data for improved quality of life indices is less clear than the effects on appetite and weight. Potential adverse effects include fluid retention, adrenal insufficiency, hypertension, and thromboembolic events. Megestrol should not be used in patients with a history of thromboembolism and is generally not recommended for patients with congestive heart failure.

• Corticosteroids such as dexamethasone and prednisone have been shown in randomized controlled trials to improve subjective appetite and overall sense of well-being, though patients did not demonstrate any significant weight gain. Corticosteroids are most appropriate for patients with a shorter life expectancy or for those who cannot receive megestrol due to history of thromboembolism. They should not be used longer than a few weeks due to the potential for significant side effects including peptic ulcer disease, cushingoid changes, and myopathy.

• Dronabinol (Marinol) is a synthetic cannabinoid that has demonstrated modest benefit in appetite stimulation in AIDS patients, but unconvincing effect on weight gain. For cancer patients with anorexia, studies have not demonstrated any improvement in appetite or weight gain. Adverse effects of dronabinol are primarily central nervous system related and include dizziness, euphoria, and confusion. Cannabinoids should be avoided in elderly patients, as they are particularly sensitive to the side effects.

Other agents that are still undergoing study as potential appetite stimulants include mirtazapine, thalidomide, COX-2 inhibitors, and L-carnitine.

ARTIFICIAL NUTRITION AND HYDRATION

When patients and families inquire about a feeding tube or TPN, clinicians should explore their specific concerns and goals. Many people hope that artificial nutrition and hydration (ANH) will improve strength or lengthen survival. For the vast majority of patients with advanced illness, ANH does not improve survival or quality of life.

ANH can lengthen survival of patients with certain conditions including extreme short-bowel syndrome, amyotrophic lateral sclerosis, acute phases of stroke or head injury, and those in a permanent vegetative state. The data for cancer patients is more varied due to the heterogeneity of the population. Most clinicians would consider ANH appropriate for patients whose disease location interferes with their ability to swallow or transit food (eg, head and neck cancer, esophageal cancer, proximal bowel obstruction) but who otherwise have good functional status. Some studies suggest that ANH may be useful in patients who are actively undergoing chemotherapy or radiation, while other studies do not support this finding. Patients with cancer-related anorexia-cachexia do not gain weight even when given aggressive calories. When a patient’s disease is no longer responding to disease-modifying treatments, experts agree that the risks of ANH, such as infection, aspiration, or volume overload, generally outweigh the benefits.

The literature does not support the use of ANH in patients with advanced dementia. Enteral tube feeds have been shown to increase the risk of aspiration, diarrhea, and gastrointestinal discomfort. Patients with dementia are at risk for pulling on feeding tubes, and studies have shown that the presence of a feeding tube increases the likelihood that patients will be physically restrained. Advanced dementia patients receiving ANH and adequate caloric intake still demonstrate continued weight loss or depletion of lean body mass. There is no evidence to suggest improved healing of pressure ulcers.

If a decision is made to pursue ANH, the clinician should discuss

• Specific goals with the patient and family, such as weight gain or maintenance.

• Designate a timepoint at which they will reassess whether ANH is still meeting these goals.

• Indications for discontinuing ANH, including any significant complication, such as infection when the risks of ongoing ANH outweigh any potential benefits.

Patients, families, and clinicians may have their own deeply rooted beliefs about the role of ANH at the end of life. Cultural or religious traditions may influence an individual’s beliefs, even when medical providers feel that the data does not support the use of ANH. If significant concerns arise, clinicians should include a palliative care clinician, chaplain or clergyperson, social worker, or ethics support staff in these discussions.

EDUCATING PATIENTS AND FAMILIES

Clinicians play a key role in educating patients and families on nutritional issues at the end of life. Although families may express great concern that their loved one will suffer from hunger, patients in the last stage of life rarely report feeling hungry. Many patients can live comfortably for weeks with minimal food and water. Forcing patients to eat may cause emotional distress, nausea, and aspiration. Many patients and families are also unaware that artificial nutrition and hydration may cause complications including infection, aspiration, and fluid overload with worsened pulmonary edema or ascites, all of which can shorten lifespan.

Conversely, families of patients at risk for aspiration may have been instructed not to offer any food or liquids by mouth. In the context of limited prognosis or imminent death, these restrictions may be lifted as long as there are not obvious symptoms of discomfort. Measures such as sitting upright, tucking the chin when swallowing, and using a thickening agent with fluids, may enable patients at risk for aspiration to eat and drink small quantities for pleasure.

Palliative care includes helping family members learn other ways of nurturing their loved ones at the bedside. Families may be encouraged to interact with patients through conversation, reading, or music. Thirst is a common complaint at the end of life, and intravenous fluids have not been shown to affect the sensation of thirst. Visitors can learn how to moisten the mouth and provide ice chips to alleviate thirst. Small sips of fluid and candy lozenges can be appropriate if patients are alert and do not show signs of discomfort.

COMPLEMENTARY MEDICINE

INTRODUCTION

The National Center for Complementary and Alternative Medicine (NCCAM), an agency of the National Institutes of Health, has defined complementary and alternative medicine as “a group of diverse medical and health care systems, practices, and products that are not generally considered to be part of conventional medicine.” The term complementary medicine refers to therapies that are used together with conventional medicine. Alternative medicine describes practices that are used in place of conventional medicine. The field of complementary and alternative medicine (CAM) includes a wide variety of practices, some of which do not conform to usual biomedical and scientific principles.

The NCCAM groups complementary and alternative medicine into several domains:

• Whole medical systems: These practices are built on complete systems of theory and practice that have evolved separately from conventional medicine. Some have existed longer than Western medical practices. Examples include homeopathy, traditional Chinese medicine, and Ayurveda (practiced on the Indian subcontinent). Systems such as traditional Chinese medicine may incorporate other domains below such as biologically based practices (herbal therapies) and energy-based therapies (acupuncture).

• Mind-body medicine: These techniques utilize the mind to affect bodily function and control symptoms. Examples include meditation, guided imagery, music therapy, and hypnosis. Some would include patient support groups and cognitive-behavioral therapies in this category.

• Biologically based practices: These therapies are based on substances found in nature including food, herbs, vitamins, and minerals.

• Manipulative and body-based practices: These treatments are based on movement of specific body parts. Examples include chiropractic and massage therapy.

• Energy-based therapies: These practices focus on energy fields such as electromagnetic fields or biofields, which purportedly surround and penetrate the body. Examples include qi gong, reiki, acupuncture, and magnetic therapy.

The use of CAM is very common in the general population. The Centers for Disease Control and Prevention’s (CDC’s) National Center for Health Statistics conducted a National Health Interview Survey in 2012 and found that an estimated 34% of adults had used CAM therapy in the past 12 months. CAM use appears to be particularly high in oncology patients, with studies reporting CAM use in 48% to 88% of patients.

ROLE OF THE CLINICIAN

Despite the widespread use of CAM in the general public, most medical providers have limited knowledge about these practices. They may not even be aware that their patients are pursuing CAM. Studies have found that most patients do not mention the use of CAM to their providers unless specifically asked. Clinicians may also struggle with how best to advise patients about certain unproven therapies without alienating those with different personal, cultural, or religious belief systems. Clinicians may encounter patients whose family members or friends are actively encouraging them to use CAM therapies. Studies have shown that friends, families, and mass media are very common sources of information for patients who decide to use CAM.

Clinicians can play a key role in advising patients who are considering the use of CAM therapies. Patients should be counseled that overall, research suggests that CAM therapies are most useful when used for alleviation of symptoms and enhancement of quality of life. There is no compelling scientific evidence at this time to support the use of alternative approaches in lieu of conventional therapies. Patients should carefully consider the potential risks and benefits of CAM therapies using reliable sources, including their medical provider and government-sponsored websites that detail current research findings and potential adverse effects.

Clinicians should advise patients and their families to consider the following questions before pursuing a CAM therapy:

• Is there research to support the use of this particular therapy?

• Does the therapy require that you stop conventional medical treatments?

• Are there substantial side effects that can interfere with your ongoing medical treatments?

• Does the treatment or practitioner make unfounded claims such as the ability to cure cancer?

• Does the treatment require travel to another country?

• Is the treatment available to the general public or is it promoted as a secret, exclusive therapy?

• Is the CAM practitioner licensed by the state to provide that specific therapy?

• Is the treatment offered by an established medical institution or is it offered only by one individual?

• How expensive is the treatment and does it require substantial out-of-pocket expense?

A full review of the different CAM therapies is beyond the scope of this discussion, but clinicians should familiarize themselves with the following:

• Commonly used therapies that might benefit palliative care patients

• CAM therapies with potential safety issues

• Resources for further education of providers and patients

COMPLEMENTARY AND ALTERNATIVE THERAPIES WITH POTENTIAL BENEFIT

There is some clinical data to support the use of CAM in palliative care patients, but the body of evidence is not extensive. Research challenges include small sample sizes, difficulty creating an appropriate control arm, difficulty standardizing the delivery of intervention, short trial duration, and limited funding.

Acupuncture has been studied for its potential role in the management of symptoms, including nausea, vomiting, and pain. There has been some positive evidence for its use in chemotherapy-induced nausea and vomiting. Some trials have suggested that acupuncture may also be useful in the treatment of pain, but systematic reviews have concluded that further studies are still needed. The risks of adverse events from acupuncture are minimal, and most complications have been related to lack of sterility of needles. Patients should be advised to only seek treatment from qualified, licensed practitioners who use disposable single-use needles. Although bleeding events are generally minor and localized, it is probably best to advise patients with bleeding disorders or on anticoagulation to avoid acupuncture. There have been case reports of rare serious events such as pneumothorax, but in general acupuncture is a safe complementary therapy.

Massage therapy can provide relief of anxiety and fatigue, based on several trials in cancer patients, though the duration of effect is not well established. Massage therapy has also been studied for its effect on pain, with several trials showing statistically significant reductions in pain measures in the immediate setting. Of note, however, pain reduction was not sustained over time. One particular form of massage, manual lymph drainage, was found in a few limited trials to reduce symptoms of lymphedema when used with compressive measures. Massage therapy is generally safe, but clinicians should advise patients with bleeding disorders or bony metastases to exercise caution and avoid all but the gentlest massage techniques.

Mind-body therapies such as hypnosis, meditation, guided imagery, and relaxation techniques have increasingly become integrated into the care of palliative care patients. Studies of mind-body interventions demonstrate potential to improve mood, relieve emotional distress, and enhance overall quality of life. Randomized control trials of relaxation training and guided imagery support their use in the treatment of anxiety. Some mind-body interventions also show promise in the treatment of physical symptoms. Hypnosis may have a role in pain and nausea treatment, based on several small randomized controlled trials. Additionally, nursing-led interventions such as breathing and relaxation techniques reduced dyspnea scores in several studies. If a patient reports benefit from mind-body therapies, clinicians can generally support their continued use as long as there is no clear interference with conventional treatments.

SAFETY CONCERNS

Clinicians should advise their patients that certain practices carry potential risks. Patients should not initiate any CAM therapies without carefully researching and considering the risks.

Quality control for herbal preparations is not standardized, and there is real potential for harm through inconsistencies in preparation and contamination. Clinicians should counsel patients that claims of “natural” ingredients do not necessarily guarantee safety. Patients have developed renal failure necessitating dialysis and even renal transplant after taking herbal preparations containing a nephrotoxic Chinese herb, Aristolochia fang chi. One case series reported a manufacturing error resulted in the substitution of Aristolochia fang chi for the herbal preparation intended for weight loss. Patients taking herbal remedies for ezcema also have developed end-stage renal failure due to contamination from Aristolochia fang chi. This herb is implicated in the development of urothelial cancer. In another example, PC-SPES (“PC” stands for prostate cancer; “spes” means “hope” in Latin), a product containing eight herbs, initially showed promise in the treatment of patients with advanced prostate cancer including decreased serum prostate-specific antigen, but it was recalled due to toxicity and contamination with conventional medications including warfarin and indomethacin. A report of a severe acquired bleeding diathesis after PC-SPES use suggested possible anticoagulant effect from warfarin contamination. The FDA subsequently issued a warning to discontinue use of PC-SPES, and this product is no longer available.

Additionally, many agents are pharmacologically active and carry the potential to interact with important conventional therapies. St. John’s wort is an inducer of cytochrome P450 (CYP3A4) and has been found to reduce levels of chemotherapeutic agents including irinotecan. Experts in CAM therapies advise against the use of St. John’s wort with concurrent chemotherapy. Ginseng and ginkgo biloba can also increase cytochrome P450 activity. Green tea (polyphenols) and grapefruit juice are known inhibitors of the cytochrome P450 system. Further information about drug interactions can be found in the resources listed below.

Patients at risk for malnutrition should avoid macrobiotic and other highly restrictive diets. Macrobiotic diets are mainly vegetarian, high in grains and low in fat. Some macrobiotic diets are also high in phytoestrogens and may pose some risk for patients with estrogen-positive breast or endometrial cancer. Similarly, the literature recommends that these patients avoid large quantities of soy products and ginseng, as some preparations of ginseng have been found to contain phytoestrogens.

Many patients take high doses of vitamins with the hope of slowing cancer progression, but there is no reliable evidence to support this. Additionally, vitamin C has some anticoagulant effect and vitamin E can diminish platelet function. Patients who are thrombocytopenic or taking anticoagulants should avoid high doses of these vitamins.

One of the most serious consequences of CAM therapies is the delay of conventional treatment in favor of alternative therapies. Clinicians should strongly caution their patients against pursuing any CAM therapies that interfere with the initiation of recommended conventional therapies.

ONLINE RESOURCES FOR PATIENTS AND CLINICIANS

Further information is available for both patients and providers on a variety of reputable websites (Table 216-12).

SUGGESTED READINGS

PAIN

NAUSEA

DYSPNEA

SECRETIONS

TERMINAL DELIRIUM

NUTRITION AND HYDRATION

COMPLEMENTARY MEDICINE

ADDITIONAL SUGGESTED READINGS

INTRODUCTION

Caring for dying patients is an integral role of hospitalists; recent data show that approximately 25% of medicare beneficiaries die in hospitals. This chapter will focus on the imminently dying patient with an expected life expectancy in the range of a few weeks or less. In the United States, the most common causes of dying include heart disease, cancer, and chronic lower respiratory disease, followed by accidents, stroke, and Alzheimer’s disease. The mere thought of dying can invoke great distress, and it is a natural response that people often try to disregard the universal inevitability of death. Not confronting end-of-life risks compounds suffering: unwanted medical interventions, impaired family bereavement, and unfulfilled life closure tasks. Physical, emotional, spiritual, and existential suffering are all possible, though not guaranteed. Health care providers need to remain sensitive to the many ways that patients and families may suffer near end of life.

Any illness that cannot be cured and contributes to a short life expectancy is a terminal illness. Most, though not all, stage IV cancers are terminal. Heart failure, chronic obstructive pulmonary disease, Alzheimer’s dementia progress from chronic to terminal illness, although these are less commonly thought of as terminal illnesses compared to cancers.

The dying process may be categorized as “acute” due to a sudden event, “chronic” due to progressive disease and/or acute exacerbations of chronic disease, or “acute-on-chronic” due to a catastrophic complication of the chronic illness. Terminal illness generally creates a negative trend in functional abilities over time with an “active dying” phase that spans a few days to a week. Active dying in the final days includes withdrawing from the world and shutting down of body organ functions. Sometimes an additional acute process complicates the signs which otherwise would have pointed to a longer, though limited, prognosis. The presence of several characteristics dying signs and symptoms mark a transition to “active” or “imminently dying” (see Table 217-1). These may be witnessed in the final minutes, hours, or days of life. Acute dying processes are less predictable; clinicians may suddenly bear witness to active dying with minimal notice during a sudden terminal event.

MOST VALUED ELEMENTS OF END-OF-LIFE CARE

A systematic review looked at the most valued elements of end-of-life care according to patients and families from United States, ­Canada, and UK. The top five ranked value categories were described in Table 217-2. “Effective communication and shared decision making” include honest communication, ability to prepare for life’s end, being prepared for what to expect about one’s future physical condition, not being placed on life support when there was little hope for recovery, and having an opportunity to nominate a decision maker. “Expert care” included good physical care (including being kept clean), symptom management (especially pain and agitation), and integrated care (coordination related to discharge planning, etc). “Respectful and compassionate care” which included preservation of dignity and “trust and confidence in care” were third and fourth priorities for all. Finally, families rated having “financial affairs” in order as fifth most important while patients were split in ranking “adequate environment for care” and “minimizing burden” (ie, not being a burden either physically or emotionally) as their next priority. Optimizing care within these categories will help hospitalists meet the end-of-life needs for their patients and families.

END-OF-LIFE PROGNOSTICATION

The patient’s prognosis is a strong driver of goals of care, and yet many clinicians lack formal training on how to best estimate prognosis and hesitate to have these discussions with patients. If one overestimates or underestimates by a significant margin, a patient may make major choices which impact their last few days with family and friends. The accuracy of prognostication diminishes with the longer time scales, and there are multiple tools with variable validation behind them for many major diseases. Hospice eligibility guidelines are used to help identify if patients have less than 6 months to live and therefore eligible for hospice; however, these guidelines lack accuracy (see Chapter 105 [Using Prognosis to Guide Treatment]).

Formulating a prognosis for the hospitalized patient begins with a fundamental understanding of the patient’s current clinical status, functional trajectory, medications, life-sustaining treatments, and the expected course for the patients’ primary disease along with their co-morbidities. Reaching out to specialists familiar with the disease and patient’s history may also help add prognostic information. However, some research has shown providers with longstanding close relationships have historically overestimated prognosis (see Figure 217-1).

Some prognostic tools use signs and symptoms like anorexia, cachexia, dyspnea, and confusion when looking at prognosis in the days to weeks range. These symptoms may be amenable to treatment interventions which may then alter the prognostic course. Any one symptom has not been shown to be indicative of a defined prognostic time frame.

COMMUNICATING A PROGNOSIS

Multiple surveys show most patients want information about their prognosis, be it good news or bad. The clinician should ask patients and families about their understanding of the medical problem, and then clarify key elements (medical facts, functional status, and disease trajectory) to set the tone for the prognostic revelation. ­Asking the patient how much they would like to know and whether they have questions about the time frame, helps ensure they are not pushed past what they can handle. “Some patients I’ve care for are worried about what the time ahead looks like. Is that something you’d like to discuss? Can you first tell me what information would be most helpful?” Patients or families may find evasiveness or inconsistencies to be distressing and unhelpful (see Chapter 215 [­Communication Skills for End of Life Care]).

CODE STATUS

Patients wanting “everything to be done” often translates into “everything helpful,” and “everything” with a reasonable chance of getting the patient back to an acceptable quality of life. Discussing code status is significantly easier if the goals of medical care have already been discussed. When providers have a good understanding of the patient’s priorities for their care, it is easier to offer a medical recommendation for a code status that aligns. “We have heard you say that your goal is to ensure that your remaining days are peaceful and as pain free as possible. Given that, we recommend that we protect you from invasive medical procedures such as a code blue. It is our medical opinion that attempting resuscitation with a code blue procedure in your final moments would create pain and suffering and is contrary to your goal of being peaceful and pain free.” If there is an agreement for a do not resuscitate (DNR) order, it may be important to summarize and close the conversation with the institutionally appropriate next steps that will follow the code status change. “So we will place a doctor’s order in your chart to protect you from a code blue, and the nurse will place a band on your wrist with the initials DNR.” Accidently forgetting this step may lead to confusion when the nurse comes in to apply an indicator, prompting unnecessary clarification calls and distress.

Patients and families fear DNR labels will preclude them from receiving equal medical treatments independent of code blue resuscitative efforts. Clinicians should not overinterpret a DNR order. Just because a patient would not want CPR performed, does not mean that an ICU transfer is automatically out of the question. Discussions about precode interventions such as blood pressure support, intensive care unit level of care, and ventilation support is not always possible on the same encounter. Patients and families may not have the stamina to make more emotional decisions; others may prefer a decision happen after an assessment of the specific medical circumstances emerge since such a wide range exists.

COMFORT CARE

When goals have been shifted to comfort care only, the medical team should reassess all interventions such as daily labs and imaging, telemetry, finger sticks, waking the patient up for vital signs, and other technology driven data for their utility. The daily physical examination may eventually be curtailed or limited to the key aspects which may inform prognosis or guide comfort plans. A physical examination, even if limited, may help support the expectations of patient and family that the team continues to be directly involved with the care of the patient. Skipping the examination all together may be perceived by some as uncaring or disengaged and a minor threat of abandonment.

Weighing a decision to transition the patient to another setting at the end of life.

Sometimes a patient may urgently request to “get home” when time is short. The medical team should respect this request if a safe discharge plan consistent with goals of care can be implemented. Table 217-3 offers a matrix for decision making about transferring a patient near end of life.

END-OF-LIFE MEDICATION

During their final days and weeks patients will have more difficulty with swallowing and taking oral medication becomes burdensome. Consider the goals of each medication, the associated burden, the risks and the benefits of continuing or discontinuing each medication (Table 217-4). Prioritize which medications take highest priority when it is not possible for patients to take all of their medications. Their decreasing ability to successfully ingest their medication sometimes offers a natural weaning phenomenon. Proactively starting to wean some medications may help avoid withdrawal.

IMPLANTABLE CARDIOVERTER DEFIBRILLATORS (ICD)

The 2013 ABIM’s Choosing Wisely List for Evidence Based Recommendations in Hospice and Palliative Medicine list includes deactivating ICDs when consistent with goals of care so that patients may be spared unnecessary painful defibrillation shocks as they near end of life. Patients and caregivers can be reassured that the pacing component can be continued despite disabling the shocking mechanism. Consider addressing this possibility prior to discharge home, as it is much easier to have an ICD deactivated inside a health care setting than following discharge. Communicate the ICD status, whether active or disabled, to the hospice or next physician caring for the patient. Caregivers of a patient with an active ICD should discuss with their cardiologist and hospice team an emergency plan for management at the end of life to minimize suffering.

PACEMAKERS

It is generally not necessary to deactivate pacemakers at the end of life. Palliative care consultation should be considered when these discussions take place. For a patient who is dependent on their pacemaker, discontinuing may invoke a host of sudden symptoms such as dyspnea and chest pain that require aggressive symptomatic palliation. Many patients die with pacemakers firing, they just fail cardiac capture. Rarely, pacemakers can be burdensome and undesired in dying patients, and, it is ethically permissible to discontinue a pacemaker.

THE DYING PROCESS

The heart, lungs, and brain are generally the three most critical organs with regards to time estimates and symptom control in the last days and weeks. As the whole body weakens, these three organs start to work toward their lowest effective rate manifesting as tachycardia, hypotension, short shallow breaths, and increasing somnolence and confusion. These findings may be incorrectly ascribed to comfort medications. Key physical examination findings and their possible prognostic significance are noted in Table 217-1. The presence or absence of a single symptom on this list is not enough to confidently define a survival time frame.

GRIEF

It is normal and natural for patients to have anticipatory grief as they grapple with their own impending death. Grief in terminal illness may relate to loss of lifestyle, identify, dreams now destined to go unfulfilled, independence, dignity, and being separated from loved ones. When clinicians recognize anticipatory grief, it may be therapeutic to name or verbalize the loss and to normalize, not minimize, the loss. “Losing the ability to care for yourself as you once could is a real loss. It’s normal to grieve this.” Providers should avoid statements such as “I understand what you are going through.” These statements are presumptuous and will more often distance rather than foster connections. Even when providers share similar experiences, it is impossible for them to be identical. Many terminally ill patients will still enjoy some of their interests, including spending time with loved ones. A patient’s hope typically shifts during terminal illness but does not evaporate. Acceptance of death and open discussion of dying happens by some and should not be mistaken for suicidal ideation.

REQUESTS FOR HASTENED DEATH

Patients and family members sometimes ask medical providers for aid in dying. The legality and physician protections for physician-assisted suicide vary in different areas of the country. Euthanasia, the intentional ending of the life of another suffering individual, is illegal in the United States. Physician-assisted suicide, sometimes referenced as “Death with Dignity Acts,” first requires that a series of conditions be met. These steps include patient initiated verbal and written requests, a psychiatric evaluation, proof of terminal illness and state residency, and mandated waiting periods. If criteria are properly met, the physician provides a lethal prescription for medication that the patient being of sound mind administers to him or herself. Sometimes prioritizing symptom control, stopping artificial life prolongation efforts and medications will lead to a shortened lifespan. This differs from euthanasia because of the intent; removing burdensome treatments that a patient does not want any longer, compared to intending the death of the patient.

A request for aid in dying should be handled gently as it typically stems from love, concern, personal suffering, or wishes to spare another from suffering. Family members may feel guilty for asking. Sharing that other family members ask for the same and recognizing that the request stems from compassion, may assuage some guilt. The family members may be aware that the patient would not want to linger and that existing in some intermediate condition (‘not really living, but not dead either’) feels purposeless to them. The family member may be exhausted and sometimes project their own suffering on the patient. Clinicians are encouraged to listen to patient and family concerns and try to understand the suffering that likely prompted the request. Be gentle, honest, and clear in your limits. Sometimes family members just need to be reminded that this phase of illness will not continue forever. Give permission for them to take breaks and care for themselves. Offer reassurance that symptoms will not go untreated. Reach out to other interdisciplinary team members (nurses, chaplains, social workers, palliative care) to help support family Sometimes another clinician’s assessment of the patient’s suffering may help both providers and family.

Palliative sedation is intended to control symptoms and reduce suffering, not to hasten death when all other efforts have been exhausted. This option requires informed consent and discussion with the interdisciplinary team, and possibly including palliative care specialists.

TERMINAL DELIRIUM

Many patients experience delirium (waxing and waning altered sensorium) as the body and systems are shutting down. At any given point in time it may be difficult to know if the delirium will be reversible or not (terminal delirium) near end of life. Clinicians should set expectations and prepare the family that delirium may not be reversible in a dying patient. Treatment of terminal delirium is guided by the goals of care (see Chapter 216 [Domains of Care: Physical Aspects of Care]).

NEAR DEATH AWARENESS

Patients may possess a sense of near death awareness when their body is failing and their existence is getting short. Physicians often come to respect the “impending doom” sign when a patient presents with a catastrophic sense that something is changing in their body. Family members may report that the patient is talking to or seeing deceased acquaintances or loved ones. Often these experiences are not fearful and may provide comfort. Redirection or medication for agitation may be necessary if the patient is distressed. The clinician should focus on listening to the patient’s needs, optimize comfort, and reassure the family that this normally happens near death.

ARTIFICIAL NUTRITION AND HYDRATION

Dying patients with failing physiology often distribute fluid ineffectively contributing to anasarca, ascites, pulmonary edema and eventually respiratory distress. Forcing food and fluids (artificially or naturally) on a dying body can add to patient discomfort. Artificial nutrition and hydration may cause increased secretions, nausea and vomiting, and patients may develop an ileus as the body shuts down. Often when artificial nutrition and hydration have been discontinued in a dying patient, some of the third spaced fluid may remobilize into the intravascular space and secretions and congestion often improve.

Most of the time dying patients are not interested in eating; some foods have transient appeal and the patient may be satiated after just a few bites. This often prompts family distress, worried their loved one is “giving up” or “starving”. Despite popular misconceptions, there is not a definite, defined, number of days after which the patient will expire from not eating or drinking. Helping family members recall the last time they were ill and not interested in eating can add insight. ­Assisting family members in finding alternative ways to “nourish” the patient such as reading, massage, music, etc. can prove patient-centered. For some withdrawing artificial fluid and nutrition provokes distress. Input from palliative and hospice consultants, ethics committees, chaplains, or relevant community spiritual leaders may help minimize harm and discomfort to the dying patient.

DYSPHAGIA AND SECRETIONS

A dying patient’s swallow function becomes less effective and their innate ability to manage even their own oral secretions worsens. In the final stages, these secretions may pool in the back of the throat near the vocal cords and as air moves past, these secretions make noise and rattle. This is sometimes called the “death rattle.” Typically, when secretions are present, the patient is near comatose and unaware of the phenomenon. Education is the first line of intervention for families, explaining the noise, and reassurance that the patient is not suffering (provided that aligns with the examination) or sharing the plan for making the patient more comfortable.

For excessive and noisy secretions, repositioning the patient in a lateral decubitus position to facilitate postural drainage may help. If oral secretions then drain from the mouth, keeping a washcloth tucked under the cheek allows for quick and easy changes. Often the secretions are too deep to be comfortably suctioned and other interventions are preferred. For extreme cases, suctioning might be trialed. If a rigid suction device is not feasible, than limited attempts of a small, flexible nasotracheal suction catheter may be applied orally or nasally. ­Anticholinergics may reduce new secretions but risk making them more thick and tenacious. Anticholinergics do not “dry up” secretions through reabsorption. Awake patients who have difficulty clearing thick, mucous secretions may find attempts to thin secretions more helpful. For secretions that correlate with clinical signs of pulmonary edema, clinicians may hesitate over whether or not to diurese a patient with a marginal blood pressure, but recalling the goals of care, will help guide that decision (see Chapter 216: [Domains of Care: Physical Aspects of Care]).

FEVER

Patients may experience fever at the end of life from a variety of infectious sources and sometimes from central nervous system dysregulation. As the body changes its hemodynamics and skin perfusion, thermometer readings may be less reliable. Palliating fever may help with tachypnea and excessive work of breathing. Remove any sources of excessive heat sources, electric blankets or bulky covers, and consider acetaminophen rectal suppositories.

ORGAN DONATION

Hospitalists are encouraged to reach out to their local organ and tissue procurement organization for specific questions related to donation of organ and tissues. Some states have restrictions on who may discuss aspects of donation with patients and family members. Most hospitals have protocols regarding how this should be done.

REMOVAL OF LIFE SUPPORT

A stepwise checklist for removal of life support is provided in Table 217-5. The clinician may check for paralysis with a patient’s ability to over-breathe the set respiratory rate on the ventilator, motor movements, and/ or use a train-of-four stimulator where 4 of 4 stimuli produce muscle contraction. For most patients the endotracheal tube (ETT) may be fully withdrawn and removed unless airway collapse is anticipated. If the ETT is serving as an airway stent (ie, tumor compression, severe inhalation injuries with edema) patients may be more comfortable leaving the ETT in place but disconnecting the ETT from the ventilator tubing. For patients on high ventilator support, it may be more peaceful to incrementally decrease support to room air settings, medicating for comfort as needed prior to removal of the endotracheal tube. Consider minimizing monitor alarms, detaching monitor leads, easing visitor restrictions to create a better ambiance. Listen to family members concerns and provide education about the process.

THE PATIENT’S FAMILY

CAREGIVER STRESS

Even individuals and family units with normal coping skills may do poorly in the setting of caregiver exhaustion and intense emotions. Family members typically need information, sometimes repeated, to allow time for processing and acceptance. Empathetic and clear communication is essential to prepare patients and families and to optimize care. When signs of caregiving stress are present, engaging interdisciplinary team members such as chaplains, palliative care consultants, and social workers can be very helpful. Encourage the family member to reach out to their personal physician (or offer to do yourself with their permission) to provide an update. Encourage the family member to take breaks and care for themselves too, chances are the patient would wish that for them.

“DON’T TELL”

A patient’s biggest worry may not be for themselves but for the wellbeing of their family members. The patient may wish to try to “protect” loved ones by avoiding difficult truths and conversations. Family members may hope to protect the patient when they fear emotional pain, are concerned that the patient will “give up”, or other reasons. Sometimes family members accurately know that their loved one is not able to integrate the information. Clinicians should listen to the family members’ concerns. Patients have the right to hear medical information about their condition if they so wish, but also to defer decision making and information sharing to others. Before divulging difficult information, the clinician should assess how the patient wants information to flow (ie, directly to the patient, or through an appointed family member, or surrogate) and explain to the concerned family member that the patient will not be forced to hear unwanted information.

Set expectations with the concerned family member that it not acceptable to deceive the patient if the patient asks for information. If the patient does not want information, and the family wants to maintain pretenses, it is best not to promise that the system can maintain the same pretenses. When patients say in private one thing, but in the presence of family express contradictory wishes, consider whether the patient is trying to protect others, is ambivalent, second-guessing, intimidated, or just prioritizing someone else’s wishes above their own. Family members accept decisions better if they know it originated from the person they love.

POSTACUTE CARE

For dying patients discharging from the acute hospital setting to a different level of care for end of life (usually either to home with hospice, long-term care nursing facility with hospice, or inpatient hospice unit), Table 217-6 offers a checklist for discharge to facilitate a smoother transitions. Sample language addressing families’ concerns is included in Table 217-7. Proper preparation for discharge includes involving hospice. Not only will hospice assist with care for patient and family unit, they also offer important bereavement (grief) support to family members (if desired) for the 13 months following the patient’s death (see Chapter 74 [Hospice]). The EMS crew transporting near-death patients should be prepared for the possibility of death en route and be provided a completed POLST (Physician Orders for Life Sustaining Treatment) or DNR form. In addition, some ambulance crews may prefer a physician order directing that if the patient should expire it is acceptable to continue to the planned destination. Some protocols require the ambulance to pull over to the side of the road and await the arrival of the police or coroner or to transport the patient to the nearest Emergency Room for death pronouncement. Prior to discharge consider if the patient will need medications as they travel to their destination, what the local transportation services can provide, and what prescriptions are requested by hospice.

HOSPITAL DEATH

HOLISTIC NEEDS OF THE DYING

Religious, spiritual, or cultural beliefs may play an important role in meeting the holistic needs of the dying. Practices that may be important in the dying and postmortem care include the presence of a spiritual leader for end-of-life rituals, the presence of someone of the same faith with the body at all times, restrictions on who may touch the body after death. Beliefs may vary significantly even within a particular faith or cultural belief. Some families will create a reverent atmosphere in the dying patient’s environment and others may prefer lighthearted festivity. The variation may be a result of tradition, coping styles, patient’s personality, lifestyle, or family tradition based on prior deathbed exposures. Team members should remain vigilant to any hints about end-of-life needs, and as opportunities arise, make sensitive inquiries. “Some families have important traditions or customs surrounding the time of death, is there anything that our team should know to best respect and care for you and the person you love?”

Family members will commonly ask “So what happens afterward?” Clinicians may respond by asking if the family member has a particular concern and then outline their institution’s process for handling a death, including formal death pronouncement, notification of family, and death certification. The nursing staff usually provide information about the duration of time the family may remain with the deceased, where the body is moved and stored, when and how the body leaves the hospital.

DEATH PRONOUNCEMENT

The clinician performing the death pronouncement should:

• Gather key information from the chart and nurse before entering the room to determine if death was expected

• Ask if the nurse (or chaplain) would like to accompany the physician as they likely have a relationship with the patient and family

• Introduce him or herself with an explanation of why the clinician is there and what the clinician is going to do

• Listen for heart sounds, breath sounds, and pupillary responses

• Clearly and compassionately state that the patient has died

• Offer condolence statements which feel natural

• Document the patient’s death in the medical record

• Inform attending of record and primary care physician of death

• Complete the death certificate

Testing for response to painful stimuli is not necessary in an expected death. Families may have questions or they may often choose to have time alone.

THE DEATH CERTIFICATE

Timely attention to completing the death certificate is required so that family members have proof of the death in order to attend to the deceased’s affairs such as planning burial or cremation and accessing funds for these services. Funeral directors will complete most of the information about the deceased with help from family. Attending physicians are expected to complete the medical aspects of the death certificate. Experience in completing death certificates varies in training programs yet this crucial role deserves close attention. For more information on physician certification of death certificates, see the Suggested Reading.

AFTER DEATH

Physicians may wish to send a condolence card or call and express their sympathies to a family member after a patient has died. Hospitalists are encouraged to explore their own responses during such intense times. The death of a patient with whom you have developed a meaningful relationship can have a lasting impact, depending on how one copes with loss.

SUGGESTED READINGS