Caring for Patients at the End of Life
Summary of Key Points
• Oncology clinicians must assess patients’ willingness to accept prognostic information and deliver this information clearly and truthfully.
• Patient decisions about resuscitation preferences and disease-directed therapy, including phase 1 trials, should be discussed in the context of their prognosis, values, and goals.
• A sense of purpose can be maintained by patients who work on completing legacies, reconciliation, saying goodbye, and making plans for support or care of bereaved survivors.
Distress
• Physical comfort is a prerequisite for exploring other sources of distress; consultation with anesthesia pain or palliative care specialists can be useful.
• Depression can be ameliorated even in the last weeks of life; delirium can be mistaken for pain and may be exacerbated if it is treated with increases in opioid medication alone.
• Problematic relationships can create open wounds as painful as any physical injury.
• Families with young children are in need of specialized counseling and support.
• Ongoing losses (in physical attractiveness or physical or mental function or of roles in the family, community, or workplace) contribute to spiritual and existential distress. Life reviews and reconnection with sources of spiritual support, including religious rituals, can help.
Hospice Care
• Hospice is the gold standard of care at the end of life. Hospice teams are multidisciplinary (including a physician, nurse, social worker, chaplain, and volunteers), but the referring physician remains in charge of the plan of care. Hospice programs provide care in the home, including all medications and durable medical equipment related to the terminal diagnosis. Patients need not have signed a “do not resuscitate” order to enroll in hospice.
• Barriers to hospice referral include physician and patient reluctance to accept a terminal prognosis (i.e., less than 6 months); current inadequate reimbursement for palliative therapies; and physician, family, and patient misconceptions about entry criteria and services provided.
Grief and Bereavement
• The intensity of a survivor’s grief depends on the characteristics of the mourner, the nature of the death, and societal and cultural factors.
• Measures that diminish the suffering of the survivors include skillfully communicating the diagnosis and terminal prognosis; providing emotional, psychological, and spiritual support and physical comfort; helping families to resolve outstanding issues; and making the death as peaceful as possible.
• Survivors appreciate ongoing communication with the patient’s physician. The formal bereavement program that hospice programs offer takes place during the first year after the patient’s death. The program includes descriptions of typical manifestations of grieving and offers of counseling, support groups, and services of remembrance.
1. Which of the following statements regarding hospice is true? (choose one)
A Patients must request a “do not resuscitate” order to enroll.
B One third of patients enrolled in hospice have a cancer diagnosis.
C Hospice care increases the risk of death of surviving spouses.
D Hospice offers bereavement services for up to 3 months after a death.
2. When sharing prognostic information, it is important to:
A Overestimate to maintain a patient’s hope
C Ensure that the patient has exhausted reasonable options for disease-directed therapy
D First assess a patient’s willingness to accept this information
3. Which of the following statements is true regarding symptoms in patients at the end of life?
A More than 80% of patients at the end of life experience delirium.
B Fifty percent of patients with cancer experience severe pain at the end of life.
C The prevalence of dyspnea for patients with cancer at the end of life is 30%.
D Most patients with cancer experience hunger at the end of life.
4. Which medication or class of medication may be most helpful to have available at home or in the hospital in the event of an anticipated catastrophic terminal event such as exsanguination from a tumor eroding into a major vessel?
1. Answer: B. One third of patients enrolled in hospice have a cancer diagnosis.
Patients do not need to forego attempts at resuscitation to enroll in hospice.
2. Answer: D. It is recommended that one first assess a patient’s willingness to accept prognostic information. For patients who are reluctant to hear prognostic information but for whom this information may significantly affect decision making, one strategy may be to negotiate limited disclosure or disclosure to a designated proxy. Answer A is incorrect, because when prognostic information is requested, it is most helpful if it is accurately conveyed. Informing the family first is never correct, but patients may request that they not be included in the conversation, and direct the health care provider to give the information to a family member who is their designated proxy. Prognostic information may be shared at the time of diagnosis or early in the course of illness if the patient wants this information shared.
3. Answer: A. It is important to recognize the prevalence of delirium in patients at the end of life, because it is often overlooked or mistaken for pain or depression.
4. Answer: B. Benzodiazepines are used in the event of catastrophic event because of their sedating properties to reduce anxiety and awareness of the event. Opioids are analgesics and are not as likely to have this desired effect because many patients with cancer are opioid-tolerant. Haloperidol is an antipsychotic drug that can be useful in treating agitation but may not lead to sedation, which would be desired in this situation. Propofol is a sedative, but its use is generally limited to the operating room or intensive care unit settings.
