In medicine, nursing and the allied health professions, end-of-life care (or EoLC) refers to health care, not only of patients in the final hours or days of their lives, but more broadly care of all those with a terminal illness or terminal disease condition that has become advanced, progressive and incurable.
Contents
- Canada
- United Kingdom
- United States
- Family and loved ones
- Spiritual care in end of life care
- Decision making
- Signs that death may be near
- Diseases Symptom management
- References
End-of-life care requires a range of decisions, including questions of palliative care, patients' right to self-determination (of treatment, life), medical experimentation, the ethics and efficacy of extraordinary or hazardous medical interventions, and the ethics and efficacy even of continued routine medical interventions. In addition, end-of-life often touches upon rationing and the allocation of resources in hospitals and national medical systems. Such decisions are informed both by technical, medical considerations, economic factors as well as bioethics. In addition, end-of-life treatments are subject to considerations of patient autonomy. "Ultimately, it is still up to patients and their families to determine when to pursue aggressive treatment or withdraw life support."
Canada
In 2012, Statistics Canada's General Social Survey on Caregiving and care receiving found that 13% of Canadians (3.7 million) aged 15 and older reported that at some point in their lives they had provided end-of-life or palliative care to a family member or friend. For those in their 50s and 60s, the percentage was higher, with about 20% reporting having provided palliative care to a family member or friend. Women were also more likely to have provided palliative care over their lifetimes, with 16% of women reporting having done so, compared with 10% of men. These caregivers helped terminally ill family members or friends with personal or medical care, food preparation, managing finances or providing transportation to and from medical appointments.
United Kingdom
End of life care has been identified by the UK Department of Health as an area where quality of care has previously been "very variable", and which has not had a high profile in the NHS and social care. To address this, a national end of life care programme was established in 2004 to identify and propagate best practice, and a national strategy document published in 2008. The Scottish Government has also published a national strategy.
In 2006 just over half a million people died in England, about 99% of them adults over the age of 18, and almost two-thirds adults over the age of 75. About three-quarters of deaths could be considered "predictable" and followed a period of chronic illness – for example heart disease, cancer, stroke, or dementia. In all, 58% of deaths occurred in an NHS hospital, 18% at home, 17% in residential care homes (most commonly people over the age of 85), and about 4% in hospices. However a majority of people would prefer to die at home or in a hospice, and according to one survey less than 5% would rather die in hospital. A key aim of the strategy therefore is to reduce the needs for dying patients to have to go to hospital and/or to have to stay there; and to improve provision for support and palliative care in the community to make this possible. One study estimated that 40% of the patients who had died in hospital had not had medical needs which required them to be there.
In 2015 and 2010, the UK ranked highest globally in a study of end-of-life care. The 2015 study said "Its ranking is due to comprehensive national policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement, and deep community engagement on the issue." The studies were carried out by the Economist Intelligence Unit and commissioned by the Lien Foundation, a Singaporean philanthropic organisation.
United States
Estimates show that about 27% of Medicare's annual $327 billion budget ($88 billion) in 2006 goes to care for patients in their final year of life. It represents 22% of all medical spending in the United States, 18% of all non-Medicare spending, and 25 percent of all Medicaid spending for the poor.
Family and loved ones
Many times, family members are uncertain what they can do when a person is dying. Many gentle, familiar daily tasks, such as combing hair, putting lotion on delicate skin, and holding hands, are comforting and provide a meaningful method of communicating love to a dying person.
Family members may be suffering emotionally due to the impending death. Their own fear of death may affect their behavior. They may feel guilty about past events in their relationship with the dying person or feel that they have been neglectful. These common emotions can result in tension, fights between family members over decisions, worsened care, and sometimes in what medical professionals call the Daughter from California syndrome: a long-absent family member swooping in while a patient is dying to demand inappropriately aggressive care.
Family members also be coping with unrelated problems, such as physical or mental illness, emotional and relationship issues, or legal difficulties. These problems can limit their ability to be involved, civil, helpful, or present.
Spiritual care in end of life care
Pastoral/Spiritual care is of particular significance in end of life care. 'In palliative care, responsibility for spiritual care is shared by the whole team, with leadership given by specialist practitioners such as pastoral care workers. The palliative care approach to spiritual care may, however, be transferred to other contexts and to individual practice'.
Decision making
Fragmented, dysfunctional, or grieving families are often unable to make timely decisions that respect the patient's wishes and values. This can result in overtreatment, undertreatment, and other problems. For example, family members may differ over whether life extension or life quality is the main goal of treatment.
Family members may also be unable to grasp the inevitability of death and the risks and effects of medical and non-medical interventions. They may demand common treatments, such as antibiotics for pneumonia or drugs to reduce high blood pressure without wondering whether that person might prefer dying quickly of pneumonia or a heart attack to a long, drawn-out decline in a skilled care facility. Some treatments, such as pureed foods for a person who has trouble swallowing or IV fluids for a person who is actively dying, seem harmless, but can significantly prolong the process of dying.
Signs that death may be near
The U.S. Government National Cancer Institute advises that the presence of some of the following signs may indicate that death is approaching:
Diseases Symptom management
The following are some of the most common potential problems that can arise in the last days and hours of a patient's life:
Typical care plans, such as those based on the Liverpool Care Pathway for dying patients, pre-authorise staff to address such diseases symptoms as soon as they are needed, without needing to take time to seek further authorisation. Subcutaneous injections are one preferred means of delivery when it has become difficult for patients to swallow or to take pills orally; and if repeated medication is needed, a syringe driver (called an infusion pump in the US) is often likely to be used, to deliver a steady low dose of medication.
Another means of medication delivery, available for use when the oral route is compromised, is a specialized catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route. The catheter was developed to make rectal access more practical and provide a way to deliver and retain liquid formulations in the distal rectum so that health practitioners can leverage the established benefits of rectal administration. Its small flexible silicone shaft allows the device to be placed safely and remain comfortably in the rectum for repeated administration of medications or liquids. The catheter has a small lumen, allowing for small flush volumes to get medication to the rectum. Small volumes of medications (under 15ml) improve comfort by not stimulating the defecation response of the rectum, and can increase the overall absorption of a given dose by decreasing pooling of medication and migration of medication into more proximal areas of the rectum where absorption can be less effective.
Other diseases symptoms which may occur, and may be mitigable to some extent, include cough, fatigue, fever, and in some cases bleeding.