End-of-life care


End-of-life care refers to health care for a person with a terminal condition that has become advanced, progressive, and/or incurable.
End-of-life care requires a range of decisions, including questions of palliative care, patients' right to self-determination, 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.
In most advanced countries, medical spending on those in the last twelve months of life makes up roughly 10% of total aggregate medical spending, and spending on those in the last three years of life can account for up to 25%. Whether or not a physician would be surprised if a person was dead within a set period of time was somewhat accurate at predicting end of life.

Care in the final days and hours of life

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 over-treatment, under-treatment, 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 National Cancer Institute in the United States advises that the presence of some of the following signs may indicate that death is approaching:
The following are some of the most common potential problems that can arise in the last days and hours of a patient's life:
; Pain
; Agitation
; Respiratory tract secretions
; Nausea and vomiting
; Dyspnea
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 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 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 symptoms that may occur, and may be mitigated to some extent, include cough, fatigue, fever, and in some cases bleeding.

Integrated care pathways

Integrated care pathways can be used to implement clinical guidelines, provide a framework for documentation and audit, and facilitate delivery of care for specific patient groups. A 2016 Cochrane Systematic Review 'End-of-life care pathways for improving outcomes in caring for the dying' concluded "there is limited available evidence concerning the clinical, physical, psychological or emotional effectiveness of end-of-life care pathways". In addition, the review encouraged health services using end-of-life care pathways to have them independently audited, with an emphasis on the findings of the Neuberger review of the Liverpool Care Pathway for dying patients.

Non-medical care and support

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 a long-absent family member arrives while a patient is dying to demand inappropriately aggressive care.
Family members may 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

has a 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.'

Medical professionals and end-of-life care

A study was conducted by Jessica Schmit from the University of Florida in 2016 about the level of comfort medical residents have with certain end-of-life care. Through this study it was found that residents received an inadequate amount of formal education on comfort-care and end-of-life care. In Schmit's study it was found that 61.9% of residents reported that their end of life conversations were "mostly unsupervised" or "never supervised", giving them very little guidance about how to do better in the future. Research is also being undertaken with regard to the role of Speech-Language Pathologists working in palliative and end-of-life care. Nurses are highly involved in comfort care for a patient at the end of life. Nurses are able to explain in practical terms what is happening to the patient after the doctor has left. Nurses also work to advocate for the patients, as they spend a lot of time with them and typically know a great deal more about the patient's wishes, symptoms, and previous medical history. Nurses, doctors, and hospice workers are critical in helping both the patient and the family move through the death process, as well as the grief that follows after.

National perspectives

Canada

In 2012, Statistics Canada's General Social Survey on Caregiving and care receiving found that 13% of Canadians 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, 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 that 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

As of 2019, physician-assisted dying is legal in 8 states and Washington D.C.
Spending on those in the last twelve months accounts for 8.5% of total aggregate medical spending in the United States.
When considering only those aged 65 and older, estimates show that about 27% of Medicare's annual $327 billion budget in 2006 goes to care for patients in their final year of life. For the over-65s, between 1992 and 1996, spending on those in their last year of life represented 22% of all medical spending, 18% of all non-Medicare spending, and 25 percent of all Medicaid spending for the poor. These percentages appears to be falling over time, as in 2008, 16.8% of all medical spending on the over 65s went on those in their last year of life.
Predicting death is difficult, which has affected estimates of spending in the last year of life; when controlling for spending on patients who were predicted as likely to die, Medicare spending was estimated at around 5% of the total.