Management often begins with communicating bad news to patients and families about likely or imminent death. This task can be extremely difficult. In cases where the patient is not deemed legally competent, make sure that the legal decision maker is present. In addition, if the patient is a non-English speaker, consider obtaining a skilled medical interpreter rather than relying on a family member. Providers may find the following P-SPIKES approach useful:23
Roles for the primary care provider include consultation, providing anticipatory guidance, providing support and comfort, and assisting with identifying and managing symptoms (including pain control) (Figure 5-2).
In assisting dying patients and their families/caregivers with making decisions about their care, clinicians should be prepared to discuss the following:
A number of factors are important in providing optimal care to the dying. In a study of factors considered important to seriously ill patients, recently bereaved family members, and physicians involved in end-of-life care, investigators found the following:24
Advance directives and advance care planning continue to be poorly utilized. Clinicians should consider outpatient and inpatient opportunities to introduce these concepts with the goals of empowering the patient and understanding the patient's preferences if they are too sick to speak for themselves. Possible scenarios can be discussed such as recovery from an acute event (specifying acceptable interventions) and persistent vegetative state (preferences for life-sustaining interventions).
- The national POL ST (physician orders for life-sustaining treatment) Paradigm task force is a new program designed to improve the quality of end-of-life care based on effective communication of patient wishes, documentation of medical orders, and a commitment by healthcare professionals to honor these wishes. Information can be found at http://closure.org and includes web-based resources for patients and health providers.
- Advance directive documents are of two broad types: instructional directives and proxy designations.
- Instructional directives, such as living wills, describe decisions about care and healthcare. These can be general or specific. Although 80% of Americans endorse completing living wills, only 20% (and fewer than one-third of healthcare providers) have completed them.6 Specific forms do not have to be used and oral directives may be enforceable.25
- Proxy designations—Appointing an individual or individuals to make medical decisions (i.e., durable power of attorney for healthcare).
Legal aspects—The United States Supreme Court has ruled that patients have a right to decide about refusing or terminating medical interventions. Many states have their own statutory forms for living wills.
- The American College of Physicians and the American Society of Internal Medicine End-of-Life Care Consensus Panel note that life-sustaining treatment may be withheld for patients unable to speak for themselves if it is believed to be the patient's wish, the surrogate decision maker states that it is the patient's wish, and/or it is in the patient's best interests to do so.25
- The prescription of high-dose opioids to relieve pain in terminally ill patients that result in death will not lead to criminal prosecution provided it was the physician's intent to relieve suffering.25
Hospice Care and Services
Hospice care refers to care when curative interventions have been judged to be no longer beneficial. This type of care can be delivered in many settings, including home, hospital, and special residential facilities.
- The types of hospice services include physician and nursing care, home health aides, pastoral care, counseling, respite care, and bereavement programs (Figure 5-3).
- Hospice eligibility general guidelines include fulfilling the criteria for end-stage disease as outlined above and documenting both the patient's and family's decision on palliative care rather than curative care and rapid disease progression. In addition, documentation of significant functional decline is important using validated instruments like FAST (Functional Assessment Staging), PPS, BADLs (Basic Activities of Daily Living), and/or NYHA Class IV heart disease. Other criteria include weight loss of 7.5% or 10% in the preceding 3 to 6 months, respectively, or serum albumin less than 2.5 g/dL.
Dr. Alan Blum is a family physician who has been doing sketches of his patients for decades now. When he presents his drawings of his patients, he reads his poetic stories that go with the drawings. Some of his drawings have been published in JAMA.
Physicians should be aware of the Medicare Hospice Benefit (MHB) covered under Medicare Part A (physician services are billed under Medicare Part B).26 In the United States, the MHB pays for 80% of all hospice care including medical, nursing, counseling, and bereavement services to terminally ill patients and their families. Medicare beneficiaries who choose hospice care receive noncurative medical and support services for their terminal illness. Home care may be provided along with inpatient care if needed and a variety of other services that are not covered by Medicare. Eligibility criteria are:
- Patient eligible for Medicare Part A or Medicaid.
- Patient is terminally ill, that is, patient's physician and the medical director of hospice certify that the patient is terminally ill and has a life expectancy of 6 months or less if the disease runs its normal course. If the medical director is the patient's physician, only one signature is required.
- Patient chooses hospice care and signs a Medicare hospice benefits form. This process is reversible and patients may at a future time elect to return to Medicare Part A.
- Hospice care is provided by a Medicare-certified hospice program.
- Under Medicare, do not resuscitate (DNR) status cannot be used as a requirement for admission.
- Entitled to receive hospice care as long as he or she meets the eligibility criteria.
- Hospice benefit consists of two 90-day benefit periods, followed by an unlimited number of 60-day benefit periods.
- Benefit periods may be used consecutively or at intervals.
- Patient needs to be certified terminally ill at the beginning of each period.
- No lifetime limit to hospice care for Medicare beneficiaries.
- If patient experiences remission of the disease and is discharged from hospice, the patient can be eligible for hospice care in the future without any regard to the previous use of hospice services.
- The same rules apply for Medicaid patients.
Services covered include physician, nurse, dietician, medical social services, medical supplies and equipment, outpatient drugs for symptom management and pain relief, and home care (e.g., aids, physical, occupational, and speech therapy). Other included services are as follows:
- Short-term general inpatient care for problems that cannot be managed at home—Most commonly intractable pain or delirium.
- Short-term respite care—Up to 5 days to permit family caregivers to take a break (can incur a 5% copayment).
- Counseling in home for patient and family.
- Bereavement, pastoral, and spiritual support for patient and family.
- Payment of consulting physician fees at 100% of Medicare allowance.
- Physician, nurse, social worker, and counselor on-call availability 24 hours a day, 7 days a week.
Services not covered include active treatment of terminal illness (except for symptom management and pain control of the terminal illness), care provided by a physician or facility that has not contracted with the patient's hospice agency, and continuous nursing assistant or nursing home room-and-board charges.
Palliative care is care focused on preventing, relieving, reducing, or soothing symptoms of disease without effecting a cure.27 As such, it is not restricted to patients who are dying, but can be used along with a curative therapy. Many hospitals now have inpatient palliative care services to assist patients, families, and primary care providers in delivering this type of care.
General approach to palliative care focuses on 4 broad domains: managing physical symptoms, managing psychological symptoms, addressing social needs. and understanding spiritual needs.
- Needs assessment—Clinicians should focus on the four domains and try to understand the degree of difficulty and how much the identified problem interferes with the patient's life.
- Setting goals and continuous reassessment—Goals for care include improving symptoms, delaying disability, finding peace, and providing for the loved ones. Plan times to review these goals as the course of the illness changes or progresses.
- Pain management—There is no reason that patients need to suffer, particularly at the end of life. Barriers to managing pain successfully include limited ability of providers to assess pain severity, fear of sanction/prosecution, and lack of knowledge (including awareness of guidelines).
- Assessment of pain—Important aspects include periodicity (e.g., continuous), location, intensity, modifying factors, effects of treatments, and impact on the patient.
- Intervention—This includes nonpharmacologic treatment (e.g., massage, positioning, transcutaneous electrical nerve stimulation [TENS], physical therapy), pain medications, and other palliative procedures (e.g., nerve blocks, radiotherapy, acupuncture).
- Pain medications may be approached in a stepwise fashion from nonopioids (e.g., acetaminophen [4 g/day], ibuprofen [1600 mg/day]), to mild opioids (e.g., codeine [30 mg every 4 hours] or hydrocodone [5 mg every 4 hours]) to stronger opioids (e.g., morphine 5 to 10 mg every 4 hours).28 Doses should be titrated as needed. Side effects (e.g., constipation, nausea, and drowsiness) should be anticipated and prevented (e.g., laxatives and antiemetic) or treated. Patients may become tolerant to these side effects after approximately 1 week. Specific pain syndromes may require additional consideration. These include:
- Continuous pain, which requires round-the-clock dosing, rescue medication, and regular assessment and readjustment. If rescue medication has been needed, increase the daily opioid dose by the total dose of rescue medication the next day. For longer duration of action, transdermal fentanyl may be considered (100 mcg/h is equianalgesic to morphine 4 mg/h and has a duration of 48 to 72 hours).
- Neuropathic pain (arising from disordered, ectopic nerve signals), which is typically shock-like or burning. Medications to consider in addition to opioids are gabapentin (100 to 300 mg daily or up to 3 times daily), 5% lidocaine patch (3 patches daily for a maximum of 12 hours), tramadol (50 to 100 mg 1 to 3 times daily), and tricyclic antidepressants (10 to 25 mg at bedtime titrated to 75 to 150 mg).29
- Adjunctive analgesic medications are those that potentiate the effects of opioids. These include the above treatments for neuropathic pain, glucocorticoids (e.g., dexamethasone once daily), clonidine, and baclofen.
- Legal concerns—Physicians may be unwilling or uncomfortable providing high-dose opioids out of fear that they would be hastening the patient's death. However, the assumption that opioids appropriately titrated to control pain hasten death is not supported by medical evidence. In addition, as noted above, the physician's intent to relieve suffering, despite the risk of death, is ethical and unlikely to result in prosecution.
Control of common symptoms:6
- Constipation—Secondary to medications, inactivity, poor nutritional/hydration, limited fiber intake, confusion, and intestinal obstruction; comorbidities such as diabetes mellitus, hypothyroidism, and hypercalcemia. The goal of treatment should be one bowel movement every 1 to 2 days. Constipation prophylaxis should be started for all patients taking regular opiate regimens. Options include increasing fiber, stool softeners (e.g., sodium docusate [Colace] 300 to 600 mg/day orally), stimulant laxatives (e.g., prune juice ½ to 1 glass/day, senna [Senokot] 2 to 4 tablets/day, bisacodyl 5 to 15 mg/day orally or per rectum), and osmotic laxatives (e.g., lactulose 15 to 30 mL every 4 to 8 hours, magnesium hydroxide [milk of magnesia] 15 to 30 mL/day).
- Dyspnea—When possible, treat reversible causes (e.g., infection, hypoxia). Options include opioids (e.g., codeine 30 mg every 4 hours, morphine 5 to 10 mg every 4 hours) and anxiolytics (e.g., lorazepam 0.5 to 2 mg oral/sublingual/IV, diazepam 5 to 10 mg oral/IV). A parenteral infusion or long-acting opiate can also be tried, with bolus dosing for breakthrough pain; nebulized opiates are ineffective for dyspnea.30 For patients with a history of respiratory disease, consider bronchodilators and/or glucocorticoids. For those with excessive secretions, scopolamine may be considered, starting with a low dose every 2 hours, or with worsening dyspnea, as needed. Oxygen is commonly prescribed, although data do not support effectiveness in improving the sensation of breathlessness;30 one crossover trial found ambient air delivered by nasal cannula was as effective as oxygen for dyspnea.31 The inexpensive and simple practice of blowing ambient air on the patient's face may help relieve dyspnea.
- Fatigue—Secondary to disease factors (e.g., heart failure, tumor necrosis factor), cachexia, dehydration, anemia, hypothyroidism, and medications. Options include decreasing activity, increasing exercise as tolerated, changing medications, glucocorticoids (e.g., dexamethasone once daily), or stimulants (e.g., dextroamphetamine 5 to 10 mg orally). Modafinil, an analeptic drug, may also be considered (initial dose: 200 mg).
- Depression—Because many of the somatic symptoms used to diagnose depression in healthy individuals are present in patients who are dying, psychological criteria become more important in making treatment decisions. Options include counseling, exercise, and medications (e.g., selective serotonin reuptake inhibitors); low doses should be used initially (e.g., fluoxetine 10 mg/day) and increased as needed. Psychostimulants (e.g., dextroamphetamine or methylphenidate 2.5 to 5 mg twice daily) may be considered if rapid onset of action is needed; these may be used in conjunction with traditional antidepressants.
- Delirium—Secondary to metabolic abnormalities (liver failure, electrolyte disturbance, vitamin B12 deficiency), infection, brain tumors, medications, and multiple other causes. Options include treating reversible causes and medications including neuroleptics (e.g., haloperidol 0.5 to 5 mg orally/subcutaneous/IM/IV every 1 to 4 hours, risperidone 1 to 3 mg every 12 hours), anxiolytics (e.g., lorazepam 0.5 to 2 mg oral/IM/IV), and anesthetics (propofol 0.3 to 2 mg/h continuous infusion).
Considerations include economic burden and caregivers.
- The U.S. health insurance system is neither universal nor comprehensive and many patients and their families find themselves under tremendous financial strain.
- Twenty percent of terminally ill patients spend more than 10% of the family income on healthcare costs beyond insurance premiums.6
- Ten percent to 30% of families need to secure additional monies by means such as selling assets or taking out a second mortgage to cover healthcare costs.6
- Twenty percent of caregivers stop work to provide care for a terminally ill family member.6
- Families/caregivers often need outside help, such as providing personal care for the patient (such as bathing), psychological or spiritual counseling, respite care, or making arrangements for the body after death.
- Primary care providers can facilitate encounters with family and friends by offering their presence and suggestions about easing the visits (e.g., reading to the patient, sharing music, or creating a videotape, audiotape, or scrapbook).
- Hospice and social workers can offer great assistance to patients and families in addressing these needs.
Understanding spiritual needs:
- Approximately 70% of dying patients become more religious or spiritual at the end of life.
- As noted by Steinhauser et al., patients noted the importance of prayer and being at peace with God.24
- Physicians should ask about and support patient and family expressions of spirituality and consider encouraging pastoral care, as desired.