Dying patients can have needs that differ from those of other patients. So that their needs can be 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 progressive 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 periodic and sometimes unpredictable acute exacerbations of the underlying disorder (eg, typical of heart failure or COPD [chronic obstructive pulmonary disease])
With the first trajectory (eg, in progressive cancer), the course of disease and time of death tend to be more predictable than with the other trajectories. For example, with prolonged dysfunction (eg, severe dementia), death may occur suddenly because of an infection such as pneumonia. With irregularly progressive dysfunction (eg, heart failure), people who do not appear near death may die suddenly during an acute exacerbation. As a result, although knowing the trajectory of functional decline can help, it is still often difficult to estimate with any precision when death will occur. Thus, clinicians are advised to consider patients that fulfill both of the following criteria as potentially dying patients, 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
If a patient is recognized as potentially dying, the clinician should
Communicate the likely course of disease, including an estimation of the length of survival, to the patient, and, if the patient chooses, to family, friends, or both
Discuss and clarify the medical goals of care (eg, palliation, cure)
Discuss and clarify what matters most to the patient and loved ones (eg, being home, being at a future event, staying mentally clear)
Arrange for desired palliative and hospice care, including supportive services (eg, home-delivered meals)
Plan what to do when death is imminent
Treat symptoms
Help address financial, legal, and ethical concerns
Help patients and caregivers deal with stress
Patients should be involved in decision making as much as they can. If patients lack capacity to make 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 practitioners 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 exact 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 (possibly)
If more than one person has the same priority (eg, several adult children), consensus is preferred, but some states allow health care practitioners to rely on a majority decision.
(See also Death and Dying in Children.)
Communication and Clarification of Goals
A common mistake is to assume that patients and caregivers understand the course of disease or recognize when death is imminent; they need to be told specifically. 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 provides them time to address spiritual and psychosocial concerns and to deliberate and make reasoned decisions about priorities for their care and their estate. Priorities can differ when 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 relieving symptoms, such as pain. Some people are most concerned with seeking forgiveness, reconciling, or providing for a loved one.
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 Physician Orders for Life-Sustaining Treatment (POLST) and similar programs are widely used and should be easily accessible in the home and in the medical record to direct emergency medical personnel regarding what medical care to give and to forgo. Decisions about specific treatments can be helpful. For example, cardiopulmonary resuscitation and transport to a hospital are usually not desirable if death is imminent; in contrast, certain aggressive treatments (eg, blood transfusions, chemotherapy) may be desired to relieve symptoms even if death is expected within days.
Palliative Care and Hospice
Palliative care
Palliative care aims to improve quality of life by helping relieve bothersome physical symptoms and psychosocial and spiritual distress. Palliative care is compatible with many curative treatments and 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 may be on a liver transplant list. However, to say that a patient's care has changed from curative to supportive or from treatment to palliation is an oversimplification of a complex decision process. Most seriously ill patients need a customized mix of treatment to correct, prevent, and mitigate the effects of various illnesses and disabilities.
Clinicians should initiate palliative care as soon as patients are identified as seriously ill and especially when they are sick enough to die. Palliative care can be provided by individual practitioners, 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 stress.
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. Services may include providing physical care, counseling, drugs, durable medical equipment, and supplies. In some countries, such as the US, hospice mostly provides services in the home; in others, such as England, hospice services are mainly in inpatient facilities.
In typical hospice care, family members serve as the primary caregivers, often with additional help from home health aides and volunteers. The hospice staff is available 24 hours a day every day. Hospice personnel are specially trained. 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 use 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 US, Medicare covers all medical care related to the hospice diagnosis, and patients are still eligible for medical coverage unrelated to the hospice diagnosis. Also, patients can leave hospice at any time and re-enroll later.
Advance Planning for Imminent Death
Planning for symptom relief as well as receiving patient and family support can help people deal with the most difficult parts of dying. When death is expected to occur at home, a hospice team typically provides drugs (a comfort kit) 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 can also help avert unnecessary, distressing hospital visits at the end of life. Family members should rehearse whom to call (eg, physician, hospice nurse, clergy) and know whom not to call (eg, ambulance service).
Witnessing the last moments of a person's life can have a powerful, lasting effect 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. Hospice providers should inquire about and make accommodation for spiritual, cultural, ethnic, or personal rites of passage desired by the patient and family members. 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. Decisions about organ donation and autopsy are usually best made before death because that is usually a less stressful time than immediately after death.
Financial Concerns and Disability
One US study has shown that one third of families deplete most of their savings when caring for a dying relative. Families should be advised to investigate the cost of care for a family member’s serious illness. Information about coverage and regulations can take substantial and diligent work to obtain. In addition to consulting the clinical care team, checking available services with the Eldercare Locator is a good place to start.
Progressive disability often accompanies 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, choosing housing that is wheelchair-accessible and close to family caregivers). Services such as occupational or physical therapy and hospice care may help a patient remain at home, even when disabilities progress. The clinical care team should know the financial effects of choices and discuss these issues with patients or family members. Some attorneys specialize in elder care and can help patients and their family members deal with these issues.
Legal and Ethical Concerns
Health care practitioners should know local laws and institutional policy governing living wills, durable powers of attorney, physician-assisted suicide, and procedures for forgoing resuscitation and hospitalization. This knowledge helps them ensure that the patient’s wishes guide care, even when the patient can no longer make decisions.
Many health care practitioners worry that medical treatments intended to relieve pain or other serious symptoms (eg, opioids for pain or dyspnea) might hasten death, but this effect is actually quite uncommon. With skillful medical care and drug titration, health care practitioners avoid the most worrisome adverse drug effects, such as respiratory depression caused by opioids. Death is not hastened by common treatments for common symptoms in advanced illness. Even if intractable pain or dyspnea requires high doses of opioids that may also hasten death, the resulting death is not considered wrongful because the drugs had been given to relieve symptoms and had been appropriately titrated and dosed. Physicians who manage symptoms vigorously and forego life-sustaining treatment need to discuss these issues openly and sensitively and document decision making carefully.
A physician should usually not provide an intervention that is conventionally considered a means of homicide (eg, lethal injection) even if the intention is to relieve suffering. Assisting with suicide (eg, by directly providing a dying patient with lethal drugs and instructions for using them) is authorized under specific conditions in California, Colorado, the District of Columbia, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont, and Washington but could be grounds for prosecution in all other parts of the US. Physician-assisted suicide is also authorized in some other countries, including the Netherlands and Switzerland. In places where physician-assisted suicide is legal, health care practitioners and patients must adhere to local legal requirements, including patient residency, age, decision-making capacity, terminal illness, prognosis, and the timing of the request for assistance. In all other states and most countries, legislation or common laws prohibit physician-assisted suicide or are unclear. In these locations, charges of homicide are plausible, especially if the patient's interests are not carefully advocated, if the patient lacks capacity or is severely functionally impaired when decisions are made, or if decisions and their rationales are not documented.
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 because funeral directors need a completed death certificate to make final arrangements. Even when death is expected, physicians may need to report the death to the coroner or police; knowledge of local law is important.
Telling 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 near death, clinicians should describe what happened, including resuscitative efforts and the patient's absence of pain and distress (if true). (If resuscitation is done, family or caregivers may prefer to witness it; no evidence indicates that their presence worsens resuscitative outcomes or family grieving.) Prudence calls for trying to ensure that close kin do not hear the news alone. When told about death, especially unexpected death, family members may be overwhelmed and unable to process information given to them or to formulate questions.
Physicians, nurses, and other health care practitioners should respond to the psychologic 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 should be masked whenever possible. When feasible, it may help for a clinician to be with the family members as they enter the room with the newly dead body because the situation is so unfamiliar to most people. Sometimes it is best to leave family members alone for a while, then return and offer explanations of treatments provided and give the family a chance to ask questions. Friends, neighbors, and clergy may be able to help provide support.
Clinicians should be sensitive to cultural differences in behavior at the time of death. The patient can decide about organ and tissue donation, if appropriate, before death, or family members and the clinical care team can discuss organ and tissue donation before or immediately after death; such discussions are ordinarily mandated by law. The attending physician should know how to arrange for organ donation and autopsy, even for patients who die at home or in a nursing home. Autopsy should be readily available regardless of where the death occurred, and decisions about autopsies can be made before death or just after death. 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
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
