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User:Jheald/sandbox/End of life care

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End of life care refers to medical care given to patients in the final hours or days of their lives, when it is clear that death is approaching. The term may also be used more broadly, to encompass all those with advanced progressive incurable disease.

National strategies

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UK

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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,[1] and a national strategy document published in 2008.[2][3] The Scottish Government has also been published a national strategy.[4][5][6]

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.[7] 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.[7] 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.[7] 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.[7][8] Other aims: patient/carer/family communication & support. Other aims: Knowledge/Training/Awareness for all staff.

Signs that death may be near

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The U.S. Government National Cancer Institute advises that the presence of some of the following signs may indicate that death is approaching:[9]

  • 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; 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), changes in heart rate, and loss of reflexes in the legs and arms are additional signs that the end of life is near.

Medical care in the last days and hours

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Symptom management

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

  • Agitation
    Delirium, terminal anguish, restlessness (eg thrashing, plucking, or twitching). Typically controlled using midazolam,[11] or other benzodiazepines. Symptoms may also sometimes be alleviated by rehydration, which may reduce the effects of some toxic drug metabolites.[12]
  • 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"). Whilst apparently not painful for the patient, the association of the symptom with impending death can create fear and uncertainty for those at the bedside.[12] The secretions may be controlled using drugs such as scopolamine (hyoscine),[11] glycopyrronium,[11] or atropine.[12] 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.[12]

Typical care plans, such as those based on the Liverpool Care Pathway for dying patients, will pre-authorise staff to give subcutaneous injections to address such symptoms as soon as they are needed, without needing to take time to seek further authorisation. Such injections are usually the preferred means of delivery, as it may become difficult for patients to swallow or to take pills orally. If repeated medication is needed, a syringe driver is likely to be used, to deliver a steady low dose of medication.

Other symptoms which may occur, and may be mitigable to some extent, include cough, fatigue, fever, and in some cases haemorrhage.[12]

Other aspects of care

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  • Food & drink. ... or doctors may advise that tube feeding should be withdrawn ...
    As noted by both NCI in America and Marie Curie in the UK, this can be one of the hardest aspects for family and carers to bear.
    -- It can seem that the patient is rejecting the very sustenance and nourishment needed to make them strong, nourishment which at other times in hospital can be so vitally needed if the patient is successfully to turn the corner. Early stages: steroids. However, in a dying patient... Although some terminally ill patients may intentionally decide to refuse food and drink to deliberately bring on the end,[13] in general the intention is not to hasten death or to starve the patient, simply that... In the United States there is some debate about artificial feeding (ie tube feeding) of terminal patients; but at least one study has shown. in addition to the personal invasiveness.
    Mouth hygiene.
  • Goals of care. Withdrawal of inappropriate medication and unnecessary monitoring.
    As the end of life approaches, a time comes when the "goals of care" shift; from prolonging life for its own sake, to making the patient as comfortable as possible.
    --
    -- incl. antibiotics, life-prolonging interventions such as blood transfusions; routine dialysis; sometimes also artificial ventilators. DNR. if this has not been done already. "goals of care".
  • Artificial hydration (ie putting the patient on an intravenous drip)
    There are differences of opinion on the usefulness of artificial hydration at the end of life. At a time when the body is slowly closing down, the additional fluid may be an unnecessary burden on the patient, may increase breathlessness and respiratory tract secretions, and may lead to peripheral or pulmonary oedema if the kidneys are unable to process it.[14] It may also be seen as "medicalising dying".[15] On the other hand, dehydration combined with the use of morphine and other drugs can lead to confusion, drowsiness and myoclonic jerking or twitching caused by a build up of toxic metabolites, which if managed simply using a sedative drug like midazolam can in turn lead to unnecessarily heavy sedation; or inevitable managed final decline at a point when a quality of life could still be retrieved.[15]
  • Closeness, Psychological support, Chaplaincy services, information, involvement and support of carers and family.

Concerns

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High doses of opiate painkillers

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In the past there has been concern that high doses of opiate painkillers such as morphine may...

... accurate titration ...

Current thinking is that opiates are probably used too little, rather than too much.

Continuous deep sedation

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See also: Terminal sedation

Clinical judgment

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A decision to end life-prolonginging treatments can rapidly become irreversible.

LCP only appropriate if all other reversible explanations have been considered and dismissed. But not an exact science. ... Telegraph article.

In the UK a doctor will not be held legally liable if it can be shown the course of action they have taken with the patient under the particular circumstances would have been followed by a responsible body of medical personnel, exercising due skill and care in the process (the "Bolam test"). Nevertheless...

References

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  1. ^ NHS National End of Life Care Programme, official website
  2. ^ End of Life Care Strategy: Promoting high quality care for all adults at the end of life, UK Department of Health, July 2008.
  3. ^ Q&A: End of life care, BBC News, 26 November 2008
  4. ^ 'Better' end of life care pledge, BBC News, 21 August 2008
  5. ^ Living and Dying Well: A national action plan for palliative and end of life care in Scotland, Scottish Government, 2 October 2008
  6. ^ Scots end-of-life plan launched as part of innovative palliative care strategy, Nursing Times, 14 October 2008.
  7. ^ a b c d End of life care: 1. The current place and quality of end of life care, House of Commons Public Accounts Committee, 30 March 2009, paragraphs 1-3.
    See also End of life care strategy, UK Department of Health, July 2008, paragraphs 1.1 and 1.7-1.14 (pages 26-27); and End of Life care, UK National Audit Office Comptroller and Auditor General's report, 26 November 2008, paragraphs 2.2-2.5 (page 15)
  8. ^ End of Life care, UK National Audit Office Comptroller and Auditor General's report, 26 November 2008, paragraph 21 (page 7) and supporting study
  9. ^ NCI Factsheet: End-of-Life Care: Questions and Answers, 30 October 2002. Some material here has been adapted verbatim from the factsheet, which is identified as being in the public domain as a creation of federal government employees (NCI Web policies: Copyright and registered trademarks).
  10. ^ This list is based on the principal heading prompts in the Liverpool Care Pathway standard documentation template. A more detailed discussion of common symptoms and potential mitigation options can be found in the U.S. National Cancer Institute's PDQ Last Days of Life: Symptom management.
  11. ^ a b c d e f LCP Sample hospital template, Marie Curie Palliative Care Institute, Liverpool. Version 11 - November 2005
  12. ^ a b c d e NCI PDQ: Last Days of Life: Symptom management, United States National Cancer Institute, Revised 9 March 2009
  13. ^ Ira R. Byock, Patient Refusal of Nutrition and Hydration: Walking the Ever-Finer Line. American Journal of Hospice & Palliative Care, 12(2), pp. 8-13. (March/April 1995) doi:10.1177/104990919501200205
  14. ^ Robert Becker, Providing hydration at the end of life: ethics and practice, Nursing Times, 9 December 2008
  15. ^ a b Peter Hargreaves, Letter to the Editor, Daily Telegraph, 5 September 2009
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