The approach to end-of-life care varies widely throughout the world and is influenced by medical, cultural, social, and legal considerations. The clinician must consider these factors when managing the care of a dying patient.
Dying patients have needs that differ from those of other patients. So that their needs are met, dying patients must first be identified. Before death, patients tend to follow 1 of 3 general trajectories of functional decline:
A limited period of steadily progressive functional decline (eg, typical of an aggressive cancer)
A prolonged indefinite period of severe dysfunction that may not be steadily progressive (eg, typical of severe dementia, disabling stroke, and severe frailty)
Function that decreases irregularly, caused by sometimes unpredictable acute exacerbations of the underlying disorder (eg, typical of heart failure or COPD [chronic obstructive pulmonary disease])
An increasing number of patients follow the second trajectory (prolonged indefinite period of severe dysfunction). This is because patients with certain diseases (eg, some types of cancers, end-stage HIV infection, neuromuscular diseases, heart failure, COPD) are living longer due to improved medical treatments that slow disease progression and reduce exacerbations.
With the first trajectory (limited period of steadily progressive functional decline, eg, in aggressive cancer), the course of disease and time of death tend to be more predictable than with the other trajectories. With the second trajectory (prolonged indefinite dysfunction), death may occur suddenly; eg, a person with severe dementia may die suddenly from pneumonia. With the third trajectory (irregularly progressive dysfunction), people who do not appear near death (eg, a person with heart failure) may die suddenly during an acute exacerbation. Therefore, knowing the trajectory of functional decline can help estimate when death will occur but cannot provide a precise timeframe. Thus, clinicians should consider patients that fulfill both of the following criteria to be potentially dying, recognizing that these criteria may be overly inclusive:
Presence of illness that is serious and expected to worsen
Death within 1 year would not surprise the clinician (1)
When a patient is recognized as having a trajectory of functional decline and potentially dying, the clinician should do the following:
Communicate the likely course of disease, including estimates of the length of survival, to the patient, and, if the patient chooses, to family, friends, or both
Reframe the goals of care to ensure the patient and family recognize that there will be a disruption of the usual course of trying additional treatments for cure (2)
Discuss and clarify the medical goals of care (eg, reduce suffering, extend life)
Prevent and treat symptoms and mitigate functional disabilities
Discuss and clarify what matters most to the patient as it relates to end-of-life care, including place of care and place of death (seePalliative and Hospice Care) (3)
Discuss other personal goals (eg, attend a future event, travel, reconcile with an estranged loved one)
Arrange for other services (eg, home-delivered meals, caregiver support, financial planning)
Plan what to do when death is imminent
Patients should be involved in decision making as much as possible. If patients lack capacity to make complex health care decisions and have a durable power of attorney for health care, the person appointed by that document makes health care decisions. If patients have no authorized surrogate, health care professionals usually rely on the next of kin or even a close friend to gain insight into what the patient's wishes would be. However, the scope of authority and the priority of permissible surrogates vary by jurisdiction. In places where default surrogate decision makers are authorized, the typical order of priority is the patient's:
Spouse (or domestic partner in jurisdictions that recognize this status)
Adult child
Parent
Sibling
Other relatives or a close friend
If more than one person has the same priority (eg, several adult children), consensus is preferred, but some states allow health care professionals to rely on a majority decision.
An incapacitated patient with no identifiable legal surrogate will need to have a legal guardian appointed for decisions about ongoing medical care, except in the case of emergency medical care, where implied consent applies.
(See also Death and Dying in Children.)
General references
1. The Gold Standards Framework: Proactive Identification Guidance. Accessed June 2024.
2. Back AL, Trinidad SB, Hopley EK, Edwards KA: Reframing the goals of care conversation: "we're in a different place". J Palliat Med. 2014;17(9):1019-1024. doi:10.1089/jpm.2013.0651
3. Pinto S, Lopes S, de Sousa AB, Delalibera M, Gomes B: Patient and Family Preferences About Place of End-of-Life Care and Death: An Umbrella Review. J Pain Symptom Manage. 2024;67(5):e439-e452. doi:10.1016/j.jpainsymman.2024.01.014
Communication and Clarification of Goals
A common mistake is to assume that patients, family, friends, and caregivers understand the likely course of disease and recognize when death is imminent; clinicians need to ensure that everyone is specifically told about the course of disease especially when death is imminent. When possible, a range of likely survival durations should be given, perhaps advising people to "hope for the best but plan for the worst." Educating patients early in the trajectory of decline, whether in the home, the clinic, emergency department, or during hospital admission, provides time to address spiritual and psychosocial concerns and to deliberate and make reasoned decisions about priorities for their care and their estate. Priorities differ among people who are facing death. For example, some people value prolongation of life, even if it causes discomfort, costs money, or burdens family. Other people identify specific goals, such as maintaining function and independence or relief of pain or other symptoms. Some people are most concerned with seeking forgiveness, reconciliation, or providing for a loved one.
Key components of advance care plans should be documented and readily accessible to other health care providers (eg, emergency department) to offer the best chance of achieving the patient's desired care. State-authorized portable medical orders, sometimes called Physician Orders for Life-Sustaining Treatment (see www.polst.org) and similar programs, are widely used in the United States and should be easily accessible in the home and medical record to direct and inform care by emergency medical personnel. Decisions about specific treatments are helpful. For example, cardiopulmonary resuscitation and transport to a hospital are usually not desirable if death is expected and imminent; in contrast, some other treatments (eg, blood transfusions, paracentesis) may relieve symptoms even if death is expected within days.
Palliative Care and Hospice
Palliative care and hospice are both specialized forms of care that support patients with serious, life-altering illness. but their aims and intent are different.
Palliative care
Palliative care improves quality of life by helping patients articulate goals of care and relieving patients of bothersome physical symptoms and psychosocial and spiritual distress (1). Palliative care is compatible with many curative or life-extending treatments that can be provided at the same time. For example, the palliative aspect of care emphasizes treatment of pain or delirium for a patient with liver failure who remains on a liver transplant list. However, to say that a patient's focus has changed from curative to supportive care or from treatment to palliation is an oversimplification of a complex decision process. Most seriously ill patients need a customized mix of treatments to correct, prevent, and mitigate the effects of various illnesses and disabilities.
Many clinicians can provide palliative care, including individual health care professionals, interdisciplinary teams, and hospice programs. Individual palliative care specialists focus on the recognition and treatment of pain and other bothersome symptoms. Interdisciplinary palliative care teams are made up of various professionals (eg, physicians, nurses, social workers, chaplains) who work together with patients' primary and specialty clinicians to relieve physical, psychosocial, and spiritual distress.
Pearls & Pitfalls
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Hospice
Hospice is a program of care and support for people who are very likely to die within a few months. Hospice care focuses on comfort and meaningfulness, not on cure or extending life. Services may include medical care, counseling, medications, durable medical equipment, and supplies. In some countries, such as the United States, hospice mostly provides services in the home; in others, such as England, hospice services are mainly in inpatient facilities.
In typical hospice home care, family members serve as the primary caregivers, often with additional help from home health aides and volunteers. Specially trained hospice staff is available 24 hours a day every day. The hospice team usually consists of the patient's personal physician, hospice physician, or medical director; nurses; home health aides; social workers; chaplains or other counselors; trained volunteers; and speech, physical, and occupational therapists as needed.
Physicians may be reluctant to recommend hospice because a treatable condition could develop. However, this reluctance is not justified because many treatable conditions are within the scope of hospice care. In the United States, Medicare and most commercial insurance plans cover all medical care related to the hospice diagnosis, and patients are still eligible for medical coverage unrelated to the hospice diagnosis. Also, patients can disenroll from hospice at any time and re-enroll later.
Palliative care and hospice reference
1. Buss MK, Rock LK, McCarthy EP: Understanding Palliative Care and Hospice: A Review for Primary Care Providers [published correction appears in Mayo Clin Proc. 2017 May;92(5):853]. Mayo Clin Proc. 2017;92(2):280-286. doi:10.1016/j.mayocp.2016.11.007
Advance Planning for Imminent Death
Planning for symptom relief as well as receiving patient and family support help people deal with the most difficult parts of the dying process. When death is expected to occur at home, a hospice team typically provides medications with instructions for how to use them to quickly suppress symptoms, such as pain or dyspnea. Family members should be told about changes that are likely during the dying process, including confusion, somnolence, irregular or noisy breathing, cool extremities, and purplish skin color. Planning and support help avert unnecessary, distressing hospital visits at the end of life. Family members should discuss who to call (eg, physician, hospice nurse, clergy) and know who not to call (eg, ambulance service).
Witnessing the last moments of a person's life has powerful, lasting effects on family, friends, and caregivers. The patient should be in an area that is peaceful, quiet, and physically comfortable. Clinicians should encourage family to maintain physical contact with the patient, such as holding hands. The care team should inquire about and make accommodation for spiritual, cultural, ethnic, or personal rites of passage desired by the patient and family. Families also often need help with burial or cremation services and arranging payment for them; social workers can provide information and advice. Regardless of setting (eg, home, hospital, nursing home, inpatient or home hospice), religious practices may affect care of the body after death and should be discussed in advance with the patient, family, or both.
Financial Concerns and Disability
Progressive disability often accompanies eventually fatal illnesses. Patients may gradually become unable to tend to a house or an apartment, prepare food, handle financial matters, walk, or care for themselves. Most dying patients need help during their last weeks. The clinical care team should anticipate disabilities and make appropriate preparations (eg, encourage housing that is disability-adapted and close to family caregivers).
Patients with long-term disabilities and fatal illnesses incur remarkable financial expenses. The clinical care team should know the financial effects of choices and discuss these issues with patients or family members. Information about health insurance coverage and eligibility and available care and support services require substantial and diligent work, and resources vary by location. In the United States, the Eldercare Locator, a government-sponsored website, provides information about services for older adults and their families. In addition, attorneys, social workers, and geriatric care navigators who specialize in elder care can guide patients and family members with these issues.
Legal and Ethical Concerns
Health care professionals should be familiar with laws and institutional policy governing the execution of living wills, durable powers of attorney, and advanced directives, as designated by the patient. They should also understand the institutional procedures for withholding or providing resuscitation, life-sustaining treatments, and hospitalization as authorized in their jurisdiction. This knowledge helps ensure that the patient’s wishes guide care, even when the patient can no longer make decisions.
Many health care professionals are concerned that medical treatments intended to relieve pain or other serious symptoms (eg, opioids for pain or dyspnea) might hasten death. While uncommon, hastening death as a result of giving medications is ethically permissible if the intent is to relieve serious symptoms (1). Physicians should discuss options for choosing or foregoing life-sustaining treatments openly and sensitively and document the decision-making process carefully.
Medical aid in dying is authorized under specific conditions in some states in the United States and some other countries. In places where medical aid in dying is legal, health care professionals and patients must adhere to legal requirements, which may include patient residency, age, decision-making capacity, terminal illness, prognosis, and the timing of the request for assistance. In other areas, legislation or common law prohibits medical aid in dying (sometimes termed physician-assisted suicide) or is unclear. Legal consequences of wrongful death or homicide are possible (2).
Legal and ethical concerns references
1. Akdeniz M, Yardımcı B, Kavukcu E: Ethical considerations at the end-of-life care. SAGE Open Med. 2021;9:20503121211000918. Published 2021 Mar 12. doi:10.1177/20503121211000918
2. Buchbinder M, Cain C: Medical Aid in Dying: New Frontiers in Medicine, Law, and Culture (October 2023). Annual Review of Law and Social Science, Vol. 19, pp. 195-214, 2023.
Supporting Caregivers after Death
A physician, nurse, or other authorized person should pronounce the patient dead in a timely way to reduce the family's anxiety and uncertainty. The physician should complete the death certificate as soon as possible to facilitate final arrangements by funeral directors. Even when death is expected, physicians may need to report the death to the coroner or police; knowledge of local law is important.
Informing family members about death, particularly unexpected death, requires planning and composure. The physician should use clear language when informing the family that death has occurred (eg, using the word "died"). Euphemisms (eg, "passed on") should not be used because they are easily misinterpreted. If the family was not present at the time of death, clinicians should describe the events, including any resuscitative efforts and the patient's absence of pain and distress (if true). Prudence calls for trying to ensure that close friends and family do not hear the news when they are alone. When told about death, especially unexpected death, family members may be overwhelmed and unable to process information or formulate questions.
Physicians, nurses, and other health care professionals should respond to the psychological needs of family members and provide appropriate counseling, a comfortable environment where family members can grieve together, and adequate time for them to be with the body. Before family members see the body, stains and tubes should be removed and odors masked whenever possible. When feasible, a clinician should accompany family members as they enter the room to view the newly dead body. The family may then grieve privately, with the clinician returning later and offering explanations of treatments provided and other information. This process provides the family with an opportunity to form and ask questions. Friends, neighbors, and clergy may also provide support.
Clinicians should be aware of and accommodate cultural differences in behavior at the time of death. Before death, the patient can decide to donate organs and tissues, if appropriate. Family members and the clinical care team can discuss organ and tissue donation before or immediately after death; such discussions are often mandated by law. The attending physician should know how to arrange for organ donation and autopsy, including for patients who die at home or in a nursing home. A substantial minority of families welcome an autopsy to clear up uncertainties, and clinicians should appreciate the role of autopsy in quality assessment and improvement.
More Information
The following English-language resources may be useful. Please note that THE MANUAL is not responsible for the content of these resources.
Compassionandchoices.org: Provides end-of-life planning tools and information about end-of-life care advocacy and medical aid in dying
National Coalition For Hospice & Palliative Care: Clinical Practice Guidelines for Quality Palliative Care, 4th Edition: Guidelines for compassionate and appropriate palliative care for all people living with serious illness, regardless of their diagnosis, prognosis, age or setting
National Hospice and Palliative Care Organization: Membership organization for providers and professionals who care for people affected by serious and life-limiting illness; includes standards of practice guidelines
