Chapter 55: Palliative Care and Special Management Issues

Palliative medicine is an essential skill set for health care professionals practicing geriatric medicine or simply caring for older adults. Supporting the needs and goals of older adults as they age is a complex process that often involves a balance between competing goals of life prolongation, functional status preservation and restoration, risk and harm mitigation, and symptom relief. Palliative care aims to ensure that these goals match the individualized care plans through interprofessional care and careful communication and goal setting.

Palliative care for older adults poses distinct challenges. For older patients with diminished reserve to respond to stressors, the potential for harm of interventions can be substantially riskier than younger populations. Cognitive impairment may limit the participation of patients at times when the most difficult decisions need to be made. The interaction of multiple illnesses in multimorbidity may reduce the potential benefit of interventions, which are otherwise therapeutic in single disease state.

It is appropriate given the aging population and the increasing evidence base for palliative care that this edition of Hazzard’s Geriatric Medicine has significantly expanded geriatric palliative medicine content. For this chapter we will focus on the palliative needs of an aging population and examine special management issues facing the geriatrician, including cognitive impairment, multimorbidity, and frailty. We will also address issues related to prognostication and advance care planning. Subsequent chapters within the palliative care section will focus on geriatric palliative care issues related to pain management, effective communication, palliative care delivery systems, spirituality, and ethics.

Palliative care aims to improve the quality of life for both the patient and the family. Palliative care focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness. It is appropriate for any type of diagnosis, any stage of a serious illness, and importantly, can be provided together with curative treatment.

Specialty palliative care consists of care by an interprofessional team of doctors, nurses, and social workers, chaplains and other individuals with expertise in palliative medicine, who work with patients’ other doctors to provide care that matches patients’ goals. In addition to palliative care specialists, the core principles of palliative care can be implemented by all health care providers (often described as primary palliative care). The key components primary palliative care include symptom management, coordination of care, communication about goals of care and advance care planning, caregiver support, and when needed, referral to specialist palliative care teams.

Hospice Care

Hospice care is a specialized form of palliative care for patients with limited life expectancy. Hospice care provides medical, psychosocial, and spiritual support to the patient. Hospice also supports family members coping with the complex consequences of illness, disability, and functional decline as death nears and includes bereavement support after death of the patient. Hospice care does not aim to shorten or prolong life, but rather provides comfort and support services to help people live out the time they have remaining to the fullest extent possible.

The Medicare Hospice Benefit employs an interdisciplinary team of professionals including doctors, nurses, aides, social workers, and spiritual care coordinators to address the patient’s physical, emotional, social, and spiritual needs. Under the Medicare Hospice Benefit, a patient is eligible for hospice care when the patient’s attending physician and the hospice medical director certify that she or he is terminally ill with an expected prognosis of less than 6 months “if the disease runs its usual and expected course.” The Centers for Medicare & Medicaid Services (CMS) has guidelines entitled local coverage determinations (LCDs) to help physicians determine a prognosis of 6 months or less. These LCDs are available on the CMS website and are guidelines to help determine prognosis, they are not rules or requirements for hospice admission. The Medicare requirement for hospice eligibility is simply the physician certification that the patient is terminally ill with an expected prognosis of less than 6 months. Once a patient is admitted, the hospice agency is required to provide services that are reasonable and necessary for the palliation and management of a patient’s terminal illness and related conditions, including doctor and nursing visits, hospice aide and counseling services, medications, medical equipment and supplies, and short-term respite and inpatient stays to manage pain and symptoms.

Health care in the United States has made tremendous advances which have allowed for an aging population. The typical death has been transformed from the nineteenth century picture of an acute illness over a short time from infectious disease into a process of decline over years with increasing morbidity and functional dependency from chronic disease. There is a clear demographic trend of increasing life expectancy. The average age at the time of death in the United States per 2013 data is now 78.8 (81.2 years for females and 76.4 for males) and survivors to age 65 live on average another 19.3 years (Figure 55-1). One of the fastest growing demographic groups has been the growth of the age 85 and over population. However, greater longevity comes at a cost. With increases in life expectancy, the burden of serious illnesses has risen significantly.

While chronic illness of older adults is increasingly complicated by multiple illnesses, two major diseases, heart disease and cancer, still accounted for nearly half of all 2013 deaths (Figure 55-2). Apart from acute respiratory illness, accidents, and suicide, the majority of deaths of older adults will be associated with a period of chronic disease. In 2013, two-thirds of people aged 65 and over had multiple chronic conditions per the Centers for Disease Control and Prevention (CDC).

As the number of comorbid conditions rise, the complexities of delivering care have had profound consequences. Patients with multimorbidity are at increased risk of disability, institutionalization, poorer quality of life, and higher risk of harm from medical treatments. Overtime, the care that these patients get often becomes more fragmented. A comparison of Medicare beneficiaries from 2000, 2005, and 2009 shows the impact at a health systems level. By 2009, 29% of Medicare beneficiaries spent a portion of their last 30 days of life in an intensive care unit. The average beneficiary had three care transitions in the last 90 days of life, and 14% had a care transition in the last 3 days of life. Although hospice use overall had risen, by 2009 28% of hospice beneficiaries died within 3 days of enrollment on hospice, a benefit designed for those with a prognosis of 6 months or less. Finally, despite extensive national focuses on improving symptom control, the report of proxies about decedents’ pain and alarming symptoms in the last year of life actually increased from 1998 to 2010 in a study using data from the Health and Retirement Study.

A final impact of care at end of life of a population with aging and multimorbidity is the significant costs associated with care. While health care inflation slowed during the last recession, future projections show health care spending is projected to be 19.3% of gross domestic product. Care associated with patients with multimorbidity accounts for markedly greater cost. In 2007, two-thirds of Medicare dollars spent were on patients with more than five chronic illnesses. A year of care for a patient with only two to three diseases costs $5698 compared to care for patients with six or more illnesses which costs an estimated $32,658 in 2010 dollars.

Palliative care offers the opportunity for reducing cost while better matching patient care to patient goals.

Palliative medicine has been a rapid growing field over the last few years, and as the field matures, there is a growing body of literature showing its benefit.

The Evidence for Palliative Care Systems

There is now substantial evidence for specialist palliative care interventions including multiple randomized trials which show palliative care improves outcomes including quality of life, satisfaction with care, reduced family distress, and increased hospice utilization. The landmark Temel study demonstrated the value of concurrent care, that is, palliative care delivered early and simultaneously with curative, disease-focused care in advanced lung cancer patients. Early palliative care for newly diagnosed metastatic lung cell cancer patients was associated with higher quality of life, less depression, and a statistically significant longer median survival (11.6 months vs 8.9 months). A recent, larger cluster randomized trial of advance cancer patients with good performance status representing a wide variety of cancer types demonstrated improved quality of life with early palliative care. Notably the statistical significance in many outcomes was not achieved until the fourth month of palliative care, emphasizing the importance of early referral to palliative care to impact quality of life measures beyond pain control. The ENABLE III study is another recent randomized trial which showed that initiating concurrent palliative care at the time of a cancer diagnosis had a significant impact on 1-year survival compared to initiating palliative care 3 months after initial cancer diagnosis (63% early vs 48% delayed) and involved multiple types of cancer not only lung cancer.

Extensive evidence is accumulating for palliative care delivery for noncancer diagnosis as well. A randomized controlled trial of homebound, terminally ill patients with a prognosis of less than 1 year not enrolled in hospice showed in-home palliative care delivery improved patient satisfaction and the chances of dying in home while reducing emergency visits. A randomized trial of hospitalized patients with acute heart failure showed short-term improvement in symptom burden, quality of life, and depressive symptoms. In addition to pain and quality-of-life concerns, management of dyspnea is a key area where palliative care provides benefit to patients. In a randomized controlled trial of patients with advanced illness (cancer, chronic obstructive pulmonary disease, congestive heart failure, interstitial lung disease, and motor neuron disease) integrated palliative care with a breathless support service improved symptom control, and similar to the Temel study, patients with chronic obstructive lung disease and interstitial lung disease lived longer with palliative care.

The Evidence for Hospice

Hospice has been shown in numerous studies to improve symptom control, increase patient satisfaction and quality of life, and help patients and families prepare for death. A major benefit of hospice over usual care is that hospice allows patients to die in their own place of residence when that is the patient’s wishes. In 2013 over 66% of hospice patients were able to die in their place of residence. More recent observational studies have suggested that hospice care may be associated with longer survival.

A specific concern of geriatricians is whether hospice adds benefits for patients with dementia in long-term care. In 2001, only 14.4% of Medicare decedents with a dementia diagnosis received 3 or more days of hospice care. By the year 2007, that proportion had grown to 33.6%. However, there is evidence that hospice does provide important value for this population. Nursing home residents with dementia and cancer who received hospice care in the last 30 days of life were less likely to die in a hospital (2%) than those who did not receive hospice (27%). Hospice enrollment increases the likelihood that patients with dementia who have pain receive an opioid.

Palliative care and geriatrics are both designed to serve the needs of the most vulnerable patients with a “common central philosophy of patient-centered commitment to holistic and humane care.” Due to the growing geriatric population, there is an unprecedented need to provide excellent palliative care to older adults, especially those with dementia, frailty, and multimorbidity. Partnerships between geriatricians and palliative medicine specialists can be especially useful for management of patients with these conditions, with each specialty working together to ensure the highest level of evidenced-based compassionate care to older adults.

Dementia

Older adults with dementia have significant symptom burden as their disease progresses and as such benefit from combined geriatric and palliative medicine approaches. Patients in the earlier stages of dementia can benefit from advanced care planning to anticipate future loss in decision-making capacity are lost to alleviate suffering of family and surrogates. As dementia progresses patients are often faced with increasing symptom burden including worsening behavioral and psychological symptoms of dementia. Pain may affect up to 46% of patients with dementia. As patients approach the end of life, the proportion with pain, dyspnea, pressure ulcers, and aspiration increases. Those with advanced disease can benefit from appropriate management of weight loss and swallowing difficulties. Those with end-stage disease can benefit from hospice services.

Health care professionals caring for older adults with earlier stages of dementia should engage patients and their families in advance care planning. Advance care planning discussions with patients in the earlier stages of dementia may result in completion of an advance directive document in which the patient can specify preferences for future care (such as a living will) and/or designate an authorized surrogate decision maker to communicate the patient’s preferences in circumstances when they no longer possess medical decision-making capacity (see more details in Chapter 66). For patients with dementia and limited life expectancy, advance care planning discussions may also result in completion of a State Authorized Portable Order for Life-Sustaining Treatments such as the Physician Orders for Life-Sustaining Treatment (POLST) form. In later stages of dementia when a patient lacks decision-making capacity, the patient’s surrogate may complete a POLST form according to the patient’s wishes. Geriatricians and palliative medicine specialists are both well equipped to conduct these vital discussions. The Gerontological Society of America has resources available to assist clinicians with communication with patients with cognitive and sensory impairments, and palliative care resources are available for communication with patients and families about delivering bad news, discussing prognosis and goals of care. Combining this expertise can lead to exceptional patient-centered care.

In advanced stages of dementia, patients may develop decreased appetite or dysphagia putting them at risk for weight loss and aspiration pneumonia, respectively. An example of the powerful collaborative effort between geriatrics and palliative medicine is evidenced in the American Board of Internal Medicine (ABIM) “Choosing Wisely” initiative. The first recommendation from the American Geriatrics Society (AGS), the American Academy of Hospice and Palliative Medicine (AAHPM), and the Society for Post-Acute and Long-Term Care Medicine (AMDA) is regarding patients with advance dementia and eating difficulties. AGS, AAHPM, and AMDA all recommend in favor of offering oral assisted feeding and recommend against percutaneous feeding tubes in advanced dementia. Studies have shown that feeding tubes in advanced dementia do not prevent aspiration pneumonia, improve healing of pressure ulcers, or lead to increased survival. In fact, feeding tube usage has been associated with the development of pressure ulcers and the use of pharmacologic and physical restraints. AGS and AAHPM recommend assistance with oral feeding as an evidence-based alternative to feeding tubes for patients with advanced dementia and difficulty eating. AGS and AAHPM agree that assistance with oral feeding places an appropriate focus on comfort and human interaction in the final phase of life instead of focusing solely on nutritional goals.

It is imperative that health care professionals provide appropriate management of behavioral and psychological symptoms of dementia. As discussed in detail in the management of agitation in Chapter 74, management of behavioral and psychological symptoms of dementia should involve (1) identifying the specific problem behavior and its severity, (2) identifying potential triggers for the behavior, (3) removing underlying physiologic and environmental triggers whenever possible, (4) attempting nonpharmacologic interventions to improve behavior, and (5) as a final resort, using recommended targeted pharmacotherapy for behaviors that do not respond to attempts of nonpharmacologic management in situations that risk patient or caregiver safety. As part of the ABIM “Choosing wisely” initiative, AGS recommends against the use of antipsychotics as first-line treatment for behavioral and psychological symptoms of dementia. Notably, a cluster randomized trial of nursing home patients with behavioral problems using an empiric stepwise protocol to treat pain resulted in a decrease in the number of symptoms. Most patients were treated with the first step of the protocol, acetaminophen. Stronger pain medicines (opioids) may be tried for nonresponders.

Determining a 6-month prognosis in advanced dementia can be challenging. Factors such as irreversible weight loss, low body mass index, functional dependence, and advanced age are associated with limited prognosis in dementia patients. Palliative medicine specialists can often help geriatricians identify patients with dementia who are eligible to receive hospice care. Geriatricians can be a valuable resource for palliative medicine specialists (and others managing these challenging behaviors) with knowledge of appropriate medications for specific behavioral conditions and age-appropriate medication dosing.

Frailty

While the exact definition of frailty remains a subject of debate (see Chapter 46), frail patients are particularly vulnerable to adverse outcomes and have significant palliative care needs. For instance, severely frail older adults have shown poor response to treatment and may not benefit from intensive rehabilitation efforts. Attempting rehabilitation of the most frail may in fact cause harm. The key to managing the palliative needs of frailty is determining goals and recognizing the patient with poor potential to improve. When in doubt, a therapeutic trial of improving performance status is always appropriate, but if not achieved should prompt a repeat discussion of goals and prognosis.

Determining the severity of frailty and the potential for reversibility can help clinicians recommend appropriate treatment. According to Fried, the frailty syndrome is characterized by a combination of (1) slowed walking speed, (2) weakness, (3) weight loss, (4) decreased activity levels, and (5) exhaustion, Older adults with a Fried score of 1 to 2 are considered “prefrail” and evidence of frailty may not be clinically apparent until the patient is exposed to a stressor such as an infection or hospitalization. Those with a Fried score greater than or equal to 3 are considered frail. Prefrail and frail older adults may respond to efforts to prevent or reverse frailty such as minimizing immobility and polypharmacy, treating pain and depression, maintaining muscle mass and strength through resistance exercise, and ensuring nutritional adequacy. Severe frailty, with a score of 4 to 5 and low cholesterol and albumin levels, has been associated with higher rates of mortality and poor response to treatment. These older adults may instead benefit from hospice services due to the high risk of mortality over 6 to 12 months.

Patients with frailty and multimorbidity may still be eligible for hospice even if they do not have a single terminal illness. While CMS has stated that frailty, debility, or adult failure to thrive are not accepted as the principal hospice diagnosis reported on the Medicare hospice claims form, this does not mean that frail patients are not eligible for the Medicare Hospice Benefit. A patient is considered hospice eligible if the attending physician and hospice medical director have certified the patient to be terminally ill with a prognosis of less than 6 months. This prognosis is determined based on the severity and irreversibility of the patient’s frailty as well as their multimorbidity. The hospice Medical Director could utilize the hospice LCDs available on the CMS website to support their determination that the patient has a prognosis of less than 6 months.

Multimorbidity

Providing optimal care for older adults with multiple chronic conditions, or multimorbidity, presents one of the greatest challenges in geriatrics. Patients with multimorbidity have increased use of health care resources, poorer quality of life, higher rates of institutionalization, disability, and death. To address the challenge of providing patient-centered care to older adults with multimorbidity, the AGS convened an expert panel with the goal of developing an optimal clinical approach for this population. The panel created a stepwise approach to patient care that integrates key principles of geriatric and palliative medicine into five domains: (1) patient preferences, (2) interpreting the evidence, (3) prognosis, (4) clinical feasibility, and (5) optimizing therapies and care plans. The following is a summary of the “Patient-Centered Care for Older Adults with Multiple Chronic Conditions: A Stepwise Approach: Expert Panel on the Care of Older Adults with Multimorbidity.”

1. Patient Preferences: The guiding principle of the patient preferences domain is “eliciting and incorporating patient preferences into medical decision making.” The expert panel emphasizes the importance of eliciting preferences and distinguishes this from simply asking patients to make a treatment decision. Eliciting preferences involves investigating a patient’s values and priorities and understanding the rationale that lead to treatment decisions. If a patient were to state that “Being independent and at home is really important to me. I know my life is short and I do not want to be bedbound or in a state where I couldn’t interact with my family. For this reason I do not want to be intubated even temporarily”; this is an example of a treatment preference, where the rationale of the decision is explained. In contrast, an example of a treatment decision statement is “I do not want to be intubated.” Patient preferences and treatment decisions should only be elicited after the patient is fully informed about the risks and benefits of the treatment options. This may be done with the use of a decision aid. It is also important for clinicians to accommodate the decision-making style of the patient. Some individuals prefer to make decisions independently, others would like the input of their family or health care provider, and some others may even prefer to completely defer decision making to family or caregivers. Some individuals prefer detailed information while others prefer general knowledge to aid in the decision-making process. Since patients may change their minds over time therefore discussions to elicit preferences are not a one-time event and should occur regularly with significant changes in health. Finally, “the principle of eliciting preferences and involving patients in the decision-making process does not mean that the patient has the right to demand any available treatment without a reasonable expectation of some benefit.”

2. Interpreting the Evidence: The guiding principle of this domain is “recognizing the limitations of the evidence base, interpreting and applying the medical literature specifically to older adults with multimorbidity.” The first step to interpreting the evidence involves reviewing the applicability and quality of the evidence, essentially, were older adults with multimorbidity sufficiently included to make the study findings relevant? The next step involves determining if the outcomes of the study are relevant to the patient. Many studies report intermediate outcomes such as lowering cholesterol or blood pressure levels rather than outcomes that affect patients more directly such as myocardial infarction and stroke or quality of life. Studies that report direct outcomes can be more meaningful when managing older adults with multimorbidity, especially those with limited life expectancy. Interpreting the evidence also includes evaluating the reported harms and burdens of the intervention. How does the intervention in the study affect other medical conditions that the older adult with multimorbidity has? The next step involves, determining if the study reports relative risk reduction (RRR) or absolute risk reduction (ARR). Since ARR incorporates the baseline risk in a population, studies that report ARR can be more meaningful for patient outcomes for older adults since they may have higher or lower baseline risk than the general population. For instance, a study may report a 50% RRR, but this could be due to a baseline risk of 2% without treatment minus a 1% risk with treatment. In this situation, although the relative risk reduction is 50%, the absolute risk reduction would only be 1%. The final step of interpreting the evidence involves considering the time horizon to benefit of the treatment. The length of time needed to accrue an observable, clinically meaningful risk reduction for a specific outcome is known as the time horizon to benefit. Similarly, the length of time in which meaningful adverse events occur is known as the time horizon to harm. For example, since the time horizon to benefit for tight glycemic control is many years, it is more likely to harm older adults with multimorbidity with limited prognosis as they will not live long enough to receive benefit and are put at immediate risk of hypoglycemia. Clinicians should engage patients in shared decision making to determine if the immediate risks of the treatment outweigh the potential future benefits.

3. Prognosis: The guiding principle of this domain is “framing clinical management decisions within the context of risks, burdens, benefits, and prognosis (eg, remaining life expectancy, functional status, quality of life) for older adults with multimorbidity.” Determining and discussing prognosis with patients and caregivers can help inform treatment decisions. Interventions can be ineffective or harmful when the time horizon to benefit is longer than the patient’s life expectancy. Further information about determining and discussing prognosis is available in the prognosis section of this chapter.

4. Clinical Feasibility: The guiding principle of this domain is “considering treatment complexity and feasibility when making clinical management decisions for older adults with multimorbidity.” For older adults with multimorbidity treatment regimens may not be feasible due to treatment complexity or cost. These factors should be taken into consideration when recommending interventions.

5. Optimizing Therapies and Care Plans: The guiding principle of this domain is “choosing therapies that optimize benefit, minimize harm, and enhance quality of life for older adults with multimorbidity.” Treatments and interventions should be prioritized to minimize risk exposure, maximize benefit, and optimize adherence to the most important pharmacologic and nonpharmacologic therapies. This involves identifying interventions (treatments, procedures, pharmacologic and nonpharmacologic therapies) that may be inappropriate for older adults and engaging patients in a discussion about not starting or stopping them.

Palliative Needs Of The Lesbian, Gay, Bisexual, And Transgender Population

Within the United States, and indeed throughout much of the world, societal acceptance of lesbian, gay, bisexual, and transgender/transsexual (LGBT) individuals is rapidly evolving. Same-sex marriage became legal in the United States on June 26, 2015, with the Supreme Court’s Obergefell v. Hodges decision. With that decision, federal recognition of benefits for married couples between two people of the same sex was officially sanctioned. However, the LGBT community has long faced health care disparities, and continued legal challenges to Obergefell v. Hodges may persist for the immediate future.

While all persons with serious illness endure difficulties, those patients who are lesbian, gay, bisexual, and transgender/transsexual may face unique issues distinct from the heterosexual population. LGBT older adults have a history of having experienced stigmatization, discrimination, victimization, or violence during their lifespan by their families, school, workplaces, and even health care providers. Health care professionals may discriminate LGBT persons in the form of derogatory comments, refusal of care, and biases. LGBT persons may present at more advanced stages of illness because they are more reluctant to seek health care or they lack health insurance. Compared to the general population that has suicide attempt rates of 1.6%, gays, lesbians, and bisexuals have rates of 10–20%, and transgender and nongender-conforming persons have the highest suicide attempt rates of 41%. The highest prevalence of lifetime suicide attempts (65%) has been found among those transgender and gender-nonconforming adults with a disability. Health care professionals should be attentive to the possibility of a suicide attempt when caring for an LGBT person who is diagnosed with a serious illness like cancer or a debilitating disabling illness like amyotrophic lateral sclerosis (ALS).

LGBT persons may need to rely on close friends rather than on family for caregiving. Nonfamily caregiving may be due to estrangement from the person’s biological family or because LGBT persons are less likely to have children. Informal communities of support are also known as “lavender families” or “families of choice” and should be respected and included as family as identified by patients. The support from the “lavender family” may become essential in caring for an LGBT individual at the end of life. It may be challenging for LGBT persons who need custodial care to find a long-term care facility that is “LGBT friendly”. LGBT patients may hide their sexual identities to be able to access a long-term care facility also known as “going back in the closet.”

Transgender patients may face several unique stressors. A person who is biologically a man but who prefers to dress and identify as a woman may be faced with having to share a hospital room with a man. Also a person who is genetically a female but who wishes to identify as male, may be faced with not being able to legally make the change because he may have conditions unique or more typical to the female gender such as endometriosis and breast cancer which would not be covered by his health insurance should he legally want to be considered as a man. Having a gender-variant body and requiring assistance for basic needs of daily living like bathing, dressing, or feeding puts the transgender individual in a vulnerable position and at risk of being physically abused.

It is of extreme importance that the LGBT person takes steps to legally document their preferences for health care and other legal matters. Individuals that may be closer to the LGBT person may not be identified as the default surrogate by law should the LGBT person no be able to make his or her own decision; and it is possible that the default decision maker may not be respectful of the individual’s chosen gender identity.

LGBT patients should designate a Health Care Power of Attorney (HCPOA) and additionally explicitly give that person the power to direct health care professionals with the preferences of name, pronoun of choice, and appearance consistent with their gender identity. Given that the HCPOA and advance directives are no longer effective as soon as the person dies it is important for LGBT persons to also put in place a Disposition of Bodily Human Remains (DBHR) document so that he or she can name who is the person to have authority over the remains of a person once deceased. For example, a same-sex partner who had HCPOA would not be able to claim the deceased body of his or her loved one unless he or she had been designated to do so in a DBHR document.

LGBT persons also may face challenges during the bereavement process, particularly if in the case of a same sex relationship, the couple had not been openly acknowledged. The surviving individual may experience “silent mourning” and not have access to traditional grief support mechanism.

Ethnic and Culturally Diverse Populations

In addition to the aging demographic changes of the US population, a key change impacting geriatric palliative care is increasing ethnic diversity. Among older adults age 65 and older, approximately 21% are members of a racial or ethnic minority (9% African Americans, 4% Asian or Pacific Islander, 7% Hispanic, 0.5% Native American, 0.1% Native Hawaiian/Pacific Islander, and 0.7% identified themselves as having two or more races) and there will be a trend to increasing diversity in older adults in the future.

Johnson reviewed racial and ethnic disparities in palliative care in 2013 and found growing evidence that racial and ethnic disparities exist in both clinical outcomes as well as in access to palliative care. Disparities in quality of care include lower satisfaction, poor communication, and worse pain management outcomes for minorities. Hospice utilization is lower for minority older adults and there are higher rates of hospice disenrollment among African Americans.

End-of-life care preferences may be significantly influenced by the expected norms of a patient’s culture of birth which may differ significantly from US health care’s expectations. However, any single patient from any ethnic group may have more or less affiliation with traditional beliefs from their culture of origin. The key is to ask. The phrase, “I am not familiar with your home country, are there any traditions or beliefs that affect your health care choices I should know about?” can begin a discussion.

Patients who are unable to speak the language of the care team are at risk of receiving care that may not match their wishes. Use of family members as interpreters risks information being withheld or incomplete translation. A trained medical interpreter at bedside or a telephone translator service is recommended.

The Institute of Medicine’s (IOM) [now known as National Academy of Medicine (NAM)] report on healthcare disparities and unequal treatment determined that patients’ attitudes toward health care and treatment preferences were not the major source of disparities. At the level of clinical encounter, factors that lead to disparities include bias or prejudice, stereotypes (beliefs held by the provider about the behavior or health of minorities) and uncertainty about preferences. The key systems factors in disparities per the NAM study were factors such as cultural and linguistic barriers, fragmentation of health care systems, and the types of incentives in place.

For clinicians seeking to learn more about ethnogeriatrics Stanford University offers an excellent online curriculum. In addition, for a point-of-care resource, The AGS publication Doorway Thoughts addresses issues and concerns providing relevant details regarding the beliefs, traditions, and customs that would apply to clinical encounters with an older adult from 15 groups of diverse ethnic backgrounds.

Prognostication is a vital aspect of decision making as it provides patients and families with information to determine realistic and achievable goals of care, is used in determining eligibility for benefits such as hospice, and helps in targeting interventions to those likely to live long enough to benefit from a proposed intervention. For example, it may take many years for the benefits to accrue for preventative interventions such as cancer screening and tight glycemic control. For frail older adults whose life expectancy is less than this time horizon to benefit, they are exposed to potential immediate harms of these preventative interventions without the possibility of receiving the benefits.

Prognostication can be broken into three general steps: (1) estimating the probability of an individual developing a particular outcome over a specific period of time, (2) the act of communicating the prognosis with the patient and/or family, and (3) the interpretation of the prognosis by the patient and/or family.

Step 1: Estimating Prognosis

Estimating prognosis in geriatric populations is more complicated than in younger populations, as older adults are more likely to have more than one chronic progressive illness that impacts life expectancy. Estimation of prognosis in multimorbid older adults requires clinicians to account for interaction of their medical problems, clinical and laboratory findings, and functional and cognitive status. While prognostication based on clinician judgment is correlated with actual survival, it is subject to numerous biases, most importantly that clinicians tend to overestimate patient survival by a factor of 3 to 5. Prognostic indices that incorporate age and clinical characteristics such as multimorbidity and functional status may improve the accuracy of prognostication compared to clinician judgment alone. A helpful repository of published geriatric prognostic indices can be found at www.ePrognosis.org.

Step 2: Communicating Prognosis

Numerous studies have shown that most individuals and their families want prognostic information, yet they are often not given the opportunity to discuss it with health care providers. This is despite evidence that effective communication around end-of-life issues can provide benefits to patients and families, without worsening of anxiety, hopelessness, or depression.

When delivering prognosis, it is first helpful to ask about the patient’s understanding of their illness and perception of what the future may have in store for them. It is also helpful to assess the readiness of the patient and/or family member to have a discussion of prognosis by asking them permission to talk about it. Based on this information, the clinician should deliver prognostic information tailored to the patient’s current desire and level of understanding. When delivering prognostic estimates, clinicians should acknowledge the inherent uncertainty in most prognostic estimates. One way to do so is by giving ranges in prognostic estimates (ie, days to weeks, weeks to months, months to years to live) or by giving the best case, worst case, and most common scenarios. In addition, delivering information on prognosis is likely to bring emotional reactions in patients and their family members. Use of empathic statements, including naming the emotion, and the use of therapeutic silence, can be helpful in supporting patients and their surrogate decision makers.

Step 3: Interpreting Prognosis

Patients’ and surrogates’ personal estimates of prognosis are often different, and generally more optimistic than what is communicated to them by health care providers. Furthermore, few surrogates solely rely on prognostication information delivered by physicians to determine their own prognostic estimates. Rather, their interpretation of prognosis is influenced by many factors, including perceptions of the patient’s strength, will to live, unique history, individual observations of physical appearance, and the surrogate’s presence, optimism, intuition, and faith. Given this information, it is helpful when delivering prognosis to include the factors that influence the clinician’s prognostic estimate, as it may also influence the patient’s or surrogate’s interpretation of prognosis. It is also valuable to enquire how the clinician’s prognostic estimate influenced how the patient or surrogate is currently thinking about the prognosis.

Advance care planning is a process of ongoing communication that allows patients (or their proxy/surrogate) to discuss with their health care professionals their values, preferences for treatment, and goals of care. Advance care planning is a process because the values or priorities of people may change as they go through life. Ideally, health care professionals should facilitate the advance care planning process for all patients in an ongoing system rather than a one-time decision. Advance care planning focuses on meaningful discussions between health care providers, patients and their surrogate decision makers to ensure there is (1) shared understanding of the patient’s prognosis, goals, and treatment options, and (2) shared decision making establishing a care plan that aligns recommended treatments with patient preferences. In a relatively healthy person the focus of the discussion may be on choosing a health care proxy and making some goals of care choices based on hypothetically catastrophic situations. In someone with a predictable progressive condition such that the person is likely to lose functional or cognitive abilities, such as someone with ALS, dementia, or other chronic conditions, the conversation should include information on prognosis. Additionally considerations should be given for treatment options with significant long-term impact such as initiating hemodialysis. In a seriously ill person, the choices are less hypothetical and an actual decision regarding treatment may be needed. In this circumstance, it is important to inform patients (or their proxies) of the risk, benefits and alternative treatments available. Considerations should also be given to deactivating devices such as implantable cardioverter-defibrillators in patients close to dying. Clinicians should also consider initiating goals of care discussions if they answer “no” to the question “Would you be surprised if this patient dies in the next year?” Overall there is evidence that discussions of goals of care with seriously ill persons lead to improved clinical outcomes, do not increase anxiety or lead to loss of hope, and help reduce distress in the surrogate decision makers.

Advance directives are written documents that state a patient’s preferences for addressing future medical decisions. Advance directives can be executed at any time by a competent adult person. Advance directives go into effect when the person is no longer capable of making health care decisions. There are many decision aids tools available to assist patients in identifying their goals and preferences.

A surrogate decision maker is a person who is authorized to make decisions about health care on behalf of the patient if they are incapacitated. Overall this is based on a hierarchy of closeness to the patient (eg, spouse, adult children, parents, etc). The hierarchy order may vary between states.

A Durable Power of Attorney for Health Care (DPOA-HC) or Health Care Proxy allows a patient to designate a person to make health care decisions on behalf of the patient should they lose decision-making capacity. This document does not specify wishes for medical care. The ideal DPOA-HC is someone who the patient knows well, is a competent adult, and is willing/able to assist in health care decision making respecting the preferences of the patient should the need arise. It is particularly important to designate a DPOA-HC when the patient is estranged from their family, or the person who may know them best would not be in the hierarchy of surrogate decision makers such as a person who wants to name a friend. The DPOA-HC becomes the first person in the hierarchy of surrogate decision makers.

A Living will allows a patient to specify in writing wishes for future medical care in the hypothetical situation where they lose decision-making capacity.

A Physician Orders for Life-Sustaining Treatment (POLST) form is not an advance directive (which outlines an older adult’s preferences for future care) but rather a standing medical order specifying decisions regarding current medical care for patients with progressive chronic illnesses. These types of orders are available in certain states. The POLST form translates patient preferences for resuscitative efforts, artificial nutrition, and other life-sustaining treatment measures into an effective state-authorized medical order. These forms accompany patients in different settings (home, hospital, nursing home).

Do not resuscitate orders document the patient’s preference of not having resuscitation attempted in the event of cardiorespiratory arrest. In the hospital setting, this is a physician order. In other environments there is the out of hospital do not resuscitate form completed by the patient, physician, and witnesses. When having conversations about cardiopulmonary resuscitation (CPR), it is important to emphasize the overall lack of success of this intervention except for in instances of out of hospital cardiac arrests of those who are relatively healthy. Only 15% of patients who undergo in hospital CPR survive to hospital discharge. When taking into consideration older frail patients undergoing CPR and the presence of serious conditions like metastatic cancer, sepsis, or multiple organ failure, make the possibility of surviving CPR to discharge practically nil.

An essential component of geriatric medicine is the routine delivery of effective primary palliative care that includes attention to symptom management, prognostication, communication, advance care planning, and individualized care plans. Appropriate referrals to specialty-level palliative care should also be considered when palliative needs are great, given the increasingly robust evidence base of benefit for both palliative care and hospice.