End-of-life care

Fragmented, dysfunctional, or grieving families are often unable to make timely decisions that respect the patient's wishes and values.[4] 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.[5] 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.[6] 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.[6]

The National Cancer Institute in the United States (US) advises that the presence of some of the following signs may indicate that death is approaching[7]:[8]

• Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in the patient's metabolism).
• Confusion about time, place, and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linens or clothing (caused in part by changes in the patient's metabolism).
• Decreased socialization and withdrawal (caused by decreased oxygen to the brain, decreased blood flow, and mental preparation for dying).
• Decreased need for food and fluids, and loss of appetite (caused by the body's need to conserve energy and its decreasing ability to use food and fluids properly).
• Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area).
• Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or decreased fluid intake).
• Skin becoming cool to the touch, particularly the hands and feet; skin may become bluish in color, especially on the underside of the body (caused by decreased circulation to the extremities).
• Rattling or gurgling sounds while breathing, which may be loud (death rattle); breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of waste products in the body, and/or a decrease in circulation to the organs).
• Turning of the head toward a light source (caused by decreasing vision).
• Increased difficulty controlling pain (caused by progression of the disease).
• Involuntary movements (called myoclonus), increased heart rate, hypertension followed by hypotension,[9] and loss of reflexes in the legs and arms are additional signs that the end of life is near.

The following are some of the most common potential problems that can arise in the last days and hours of a patient's life:[10]

Pain[11]

Typically controlled with opioids, like morphine or, in the United Kingdom, diamorphine.[12][13] High doses of opioids can cause respiratory depression, and this risk increases with concomitant use of alcohol and other sedatives.[14] Careful use of opioids is important to improve the patient's quality of life while avoiding overdoses.

Agitation

Delirium, terminal anguish, restlessness (e.g. thrashing, plucking, or twitching). Typically controlled using midazolam,[13] other benzodiazepines, or levomepromazine. Haloperidol is commonly used as well.[15] Symptoms may also sometimes be alleviated by rehydration, which may reduce the effects of some toxic drug metabolites.[16]

Respiratory tract secretions

Saliva and other fluids can accumulate in the oropharynx and upper airways when patients become too weak to clear their throats, leading to a characteristic gurgling or rattle-like sound ("death rattle"). While apparently not painful for the patient, the association of this symptom with impending death can create fear and uncertainty for those at the bedside.[16] The secretions may be controlled using drugs such as scopolamine (hyoscine),[13] glycopyrronium,[13] or atropine.[16] Rattle may not be controllable if caused by deeper fluid accumulation in the bronchi or the lungs, such as occurs with pneumonia or some tumours.[16]

Nausea and vomiting

Typically controlled using haloperidol,[15] cyclizine;[13] or other anti-emetics.

Dyspnea (breathlessness)

Typically controlled with opioids, like morphine or, in the United Kingdom, diamorphine[12][13]

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 (or 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.[17][18]

Other symptoms that may occur, and may be mitigated to some extent, include cough, fatigue, fever, and in some cases bleeding.[16]

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.[19] 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".[20] 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.[20]

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.[21]

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 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.

Pastoral/spiritual care has a particular significance in end of life care.[22] '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.[23]'[24]

In 2012, Statistics Canada's General Social Survey on Caregiving and care receiving[27] 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.[28]

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,[29] and a national strategy document published in 2008.[30][31] The Scottish Government has also published a national strategy.[32][33][34]

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[35][36][37] – 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.[35] 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.[35] 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.[35][38]

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.[39][40][41][42][43]

As of 2019, physician-assisted dying is legal in 8 states (California, Colorado, Hawaii, Maine, New Jersey, Oregon, Vermont, Washington) and Washington D.C.[44]

Spending on those in the last twelve months accounts for 8.5% of total aggregate medical spending in the United States.[2]

When considering only those aged 65 and older, 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.[45][46][47] 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.[45] 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.[48]

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.[49]