PatientPlus articles are written by UK doctors and are based on research evidence, UK and European Guidelines. They are designed for health professionals to use, so you may find the language more technical than the condition leaflets.
Given the option, most people would choose to die at home surrounded by those they love.The latter may require support and resources to help them to cope.This can be a significant burden upon the Primary Healthcare Team in terms of time and emotion but it can also be most rewarding.
A report from the National End of Life Care Intelligence Network compared people's preferences for place of death with actual place of death and reported that variations exist across England and between conditions (69% of people with non-cancerous respiratory conditions die in hospital).
Over half of all deaths still take place in acute hospital and the National End of Life Care Strategy for England has provided a blueprint for improvements in the provision of care for terminal patients in hospital environments.
Terminal care is not just cancer care but other relevant diseases include heart failure, respiratory failure, chronic renal failure, hepatic failure, certain neurological diseases such as multiple sclerosis and motor neurone disease, and AIDS. Each may bring its own challenges in terms of the provision of terminal care. Studies of end-stage chronic obstructive pulmonary disease (COPD) patients, for example, found that such patients tend not to ask for help actively and a discussion about support may need to be initiated by the healthcare worker.[5, 6]
The Gold Standards Framework is supported by many authoritative bodies and represents a standard of excellence to which we should aspire.They summarise as their key tasks the '7 Cs':
- Control of symptoms.
- Continuity including out of hours.
- Continued learning.
- Carer support.
- Care in the dying phase.
One of the key factors in managing terminal care is to institute such care at an appropriate time. This involves an estimation of prognosis. The Gold Standards Framework has developed a Prognostic Indicator Guide to assist in this process.
Over 90% of UK practices now have a palliative care register and regular palliative care meetings. The Gold Standard Framework National Centre is launching a 'Going for Gold: Next Steps' initiative in conjunction with the 2012 Olympics, which challenges GP practices to deliver palliative care which is:
- Equitable (ie offered to non-cancer, as well as cancer, patients).
- Add notes to any clinical page and create a reflective diary
- Automatically track and log every page you have viewed
- Print and export a summary to use in your appraisal
Requirements at home
For the patient wishing to die at home there must be adequate back-up. This usually means a close person such as a spouse, long-term partner, close relative or a team of people who are available 24 hours a day. Night sitter services are available but costly. The carer must be prepared to cope with the emotional and physical needs of the patient and these can both be very demanding.
Care of the dying patient at home requires a team approach involving the GP, district nurses, perhaps Macmillan nurses and any other professionals with input. This may include Social Services. Very often a minister of religion will be visiting too. There should be a key worker who is the main point of contact for the patient, the family and the rest of the team. The key worker is often not the most senior member of the team but is the important person who liaises and who ascertains that nothing is left undone or duplicated.
If there is likely to be any problem out of hours, the local provider of unscheduled care should be informed. They should have a list of all terminal patients. Adequate liaison may prevent unnecessary visits including, if the family agrees, waiting until the morning to certify death.
Death will come to us all but when it becomes imminent, emotions are bound to be strong.
Fear is common. How long will it be? What will it be like? Try to be honest with the patient and answer questions to the best of your ability, including being honest about uncertainties. Most people do want straight answers but you need the greatest intuition to know just how much the patient really wants to know and how much he or she really wants hidden.
Many people faced with death will turn to God either for the first time or as a return to lost faith. Put them in contact with a minister of religion if required but do not attempt to influence an area that is not in your sphere.
They may also wish to make peace to end feuds with relatives or friends.
If a will has not been made, then even at this late stage it should be done, as dying intestate almost invariably causes complications.
As death approaches the patient will become weaker. He or she will need help in and out of bed and to the toilet. Sleep may be excessive. Appetite usually diminishes and weight falls. Be prudent in deciding if intensive nourishment is in the interest of the patient. Food dense in calories is often poorly absorbed and may produce diarrhoea and the distress of faecal incontinence.
Urinary incontinence is often followed by faecal incontinence. This is distressing for the patient, unpleasant for the carer and adds to the burden of laundry. Pads, waterproof under-sheets, etc. are useful. As well as the unpleasantness, incontinence is a danger to the integrity of skin and in this condition, if it breaks down, it may never heal again. A urinary catheter may be required but do not be too eager and discuss the options with all parties first.
Immobility, poor circulation and inadequate nutrition all predispose to pressure ulcers . Frequent turning, sheep skins and ripple mattresses are all to be considered. Turning can sometimes be very painful but necessary.
Pain and distress
See also our separate article Pain Control In Terminal Care.
Pain is what patients fear most although, in reality, other features such as dyspnoea may be more distressing. There is a very wide range of other problems that will be encountered and most patients will suffer a number of them. These can include:[9, 10, 11, 12]
- Neuropsychiatric symptoms
- Urinary symptoms
- Dermatological symptoms
The hospice movement has done much to further knowledge about the management of pain and distress in terminal care. The doctor should be confident in his ability to manage pain and this should be transmitted to both patient and carers.
- Keep to oral medication for as long as possible.
- Try to avoid injections.
- Patches for drugs such as fentanyl are expensive but useful. Syringe drivers can be valuable.
- Let others, including patient or carers, decide to increase the dose if required but keep a general overview to ensure that a rational regime is in place.
- If doses are too far apart the pain becomes severe and debilitating and requires a very high dose to suppress it. Hence, the patient spends half the time distressed by uncontrolled pain and the other half sedated by heavy medication.
- In the terminal stages decide what routine drugs can be stopped.
- The central anxiolytic action of the opiates is very important and drugs including benzodiazepines, tricyclic antidepressants and phenothiazines can enhance the effect. Despite their effect of suppressing the respiratory drive, they can also be valuable in alleviating some of the distress of dyspnoea of respiratory or cardiac failure but they should be used with care.
The following table may be a useful guide when a drug, dose or route of administration needs to be changed:
|Approximate equivalent doses of strong opioid analgesics|
|Route||Period||Opioid naive||Incremental doses (mg)||Relative potency to |
oral morphine (24 hours)
|Morphine||oral||4 hours||5 mg||10/20/30/45/60||1|
|Morphine SR||oral||12 hours||15 mg||45/60/90/135/180||1|
|Morphine||subcutaneous||4 hours||2.5 mg||7.5/10/15/25/30||2|
|Morphine||continuous subcutaneous infusion||24 hours||15 mg||45/60/90/135/180||2|
|Diamorphine||subcutaneous||4 hours||2.5 mg||5/7.5/10/15/20||3|
|Diamorphine||continuous subcutaneous infusion||24 hours||10 mg||20/30/40/60/90/120||3|
|Oxycodone||oral||4 hours||5 mg||7.5/10/15/25/30||2|
|Oxycodone SR||oral||12 hours||10 mg||20/30/40/60/80||2|
In addition, a table of relative potency of different drugs may be useful.Scottish Intercollegiate Guidelines Network (SIGN) has also produced guidelines for the control of pain in cancer.
Since the trial of Harold Shipman many doctors have become very wary about the use of opiates and other drugs in terminal care. If patients suffer as a result this is most regrettable. Palliative care may require sedation for symptoms other than pain, such as involuntary movements.Sedation is frequently required.
The ethical issues surrounding decisions about palliative sedation and the role of food and fluid intake in the prolongation of life are extremely complex. A systematic review found inconsistencies in approach and calls for multicentre, prospective, longitudinal and international studies to help inform the process.
Our job is to prolong life, not to prolong death and, whilst it may be argued that adequate sedation may slightly shorten the terminal phase, this is not the same as euthanasia. Furthermore, it should not be assumed that adequate relief of pain will necessarily hasten death.Sometimes patients or relatives may plead for the health professional to end a tragic last phase.Repeated requests are difficult to deal with. One study found that the response was variable and called for healthcare professionals to share the experience of troubling cases and of moral conflict and to be supported and heard in a non-judgemental environment.
In order to assist clinicians with these difficult issues, the General Medical Council (GMC) has published guidance 'Treatment and care towards the end of life: good practice in decision making'.While the document should be read in its entirety, salient points are as follows:
- Care should be equitable. Capacity and human rights legislation should be borne in mind.
- All reasonable steps should be taken to prolong a patient's life but there is no absolute obligation to prolong life irrespective of the consequences for the patient or the patient's views.
- Every adult patient should be presumed to have the capacity to make decisions about their care and treatment unless proved otherwise.
- If an adult patient lacks capacity, the decisions made on the patient's behalf must be based on whether treatment would be of overall benefit (including the option not to treat) in consultation with those close to the patient.
- Different decision-making paths should be followed for patients who have capacity and those who do not (full details are provided in the GMC guidance).
As death approaches, the amount of time spent drowsy or comatose increases, the lucid time decreases and increases in medication are usual with increased dose and frequency.This is usual and the clinician should not be unduly concerned or surprised when it happens.
Before the terminal stage and particularly whilst still of sound mind, unimpaired by drugs, the patient may wish to consider terminal care and how he or she wants it to be managed. Advance directives, also called living wills, are the vehicle for this. A conventional will should also be in place.
Caring for the carer
Caring for a loved one who is dying is a very demanding time. The emotional turmoil, compounded perhaps by lack of sleep, must take its toll. Seeing one's parent, sibling or spouse slipping from a strong and independent person to becoming a frail, dependent, incontinent and perhaps, at times, confused shadow of his or her former self is most distressing and can produce feelings of anger or guilt. Perhaps the husband looking after his dying wife is having difficulty coping with the double incontinence or the frail woman is struggling with heavy lifting.
Carers, like the patient, need to know what to expect. For example, they may find the 'death rattle' of terminal breathing or Cheyne-Stokes breathing most distressing.
All attention is on the dying patient. Do not forget the needs of those who care.
Remember practical details too like whom to call in case of need and what to do when death occurs. They must not, in ignorance, dial 999/112/911.
Have they spoken to the patient about practical details including funeral arrangements and where the will is lodged? When you certify the death, speak to the carers to let them know that you care about them too. Arrange to see them in the surgery some time after the funeral or for them to see their own doctor if they are not your patient. Usually it is a busy time until the funeral and it is after everyone has left that the emptiness appears.
Whilst their needs can be challenging, carers should also be seen in a positive light as an ally and a resource. They are often the best person to assist the health professional in making decisions about the care of the dying patient.
While it is recognised that carers need practical, psychological and financial support, there is a considerable lack of evidence as to what interventions are likely to be most helpful and further research needs to be done in this area.
Death in the young
When an old person dies it is often an emotional time although one can rationalise a degree of satisfaction at the end of 'a good innings'. When a young adult, an adolescent or child dies, emotions are compounded and you need also to be aware of the emotional needs of all around.This includes your professional team and yourself. All the above applies as much to the young as to the old but the curtailment of a life of promise is emotionally much more traumatic. One study suggested that there was still a lack of routine contact from the healthcare team with the family following the death of a child.
Care at the beginning of life has been removed from the hands of most general practitioners but we can still discharge ourselves with credit at the end. Care of the dying at home is very time-consuming, difficult and demanding but there is much professional satisfaction. The After Dying Assessment Tool, developed as part of the Gold Standards Framework, can be used to monitor areas requiring improvement and as a benchmark for successful quality improvement.
Your surviving patients will judge you on how you managed the entire episode. It is the ultimate in holistic care. Show competence and compassion.
Death is not a failure of modern medicine but as inevitable as ever it was. "And one day, I too shall face death and not as a stranger."
Further reading & references
- Improving supportive and palliative care for adults with cancer; NICE Cancer Service Guideline, March 2004
- Advance Care Planning; Palliative Care Wales
- National Council for Palliative Care (NCPC)
- National End of Life Care Programme, 2011
- One chance to get it right; Report of the Leadership Alliance for the Care of Dying People, June 2014
- End of life care for infants, children and young people with life-limiting conditions: planning and management; NICE Guidance (December 2016)
- Hobson S; End-of-life care: supporting independent and healthy lives. Br J Community Nurs. 2010 Jul;15(7):341.
- Jack B, O'Brien M; Dying at home: community nurses' views on the impact of informal carers on cancer Eur J Cancer Care (Engl). 2010 Sep;19(5):636-42. Epub 2009 Dec 21.
- Variations in Place of Death in England; National End of Life Care Intelligence Network
- Ellershaw J, Hayes A; Improving the care of dying patients in hospitals. Br J Hosp Med (Lond). 2011 Aug;72(8):426-7.
- Habraken JM, Pols J, Bindels PJ, et al; The silence of patients with end-stage COPD: a qualitative study. Br J Gen Pract. 2008 Dec;58(557):844-9.
- White P, White S, Edmonds P, et al; Palliative care or end-of-life care in advanced chronic obstructive pulmonary Br J Gen Pract. 2011 Jun;61(587):362-70.
- Gold Standards Framework
- GSF Primary Care Briefing Paper 2009, Gold Standard National Centre
- Savage EB, Benckart DH, Donahue BC, et al; Intermittent hypoxia due to right atrial compression by an ascending aortic Ann Thorac Surg. 1996 Aug;62(2):582-3.
- Clary PL, Lawson P; Pharmacologic pearls for end-of-life care. Am Fam Physician. 2009 Jun 15;79(12):1059-65.
- Spiller RC; ABC of the upper gastrointestinal tract: Anorexia, nausea, vomiting, and pain. BMJ. 2001 Dec 8;323(7325):1354-7.
- Arnold SD, Forman LM, Brigidi BD, et al; Evaluation and characterization of generalized anxiety and depression in patients Neuro Oncol. 2008 Apr;10(2):171-81. Epub 2008 Feb 26.
- Opioid Potency Ratios; Palliative Care Guidelines Plus
- Control of pain in adults with cancer; Scottish Intercollegiate Guidelines Network - SIGN (November 2008)
- Lo B, Rubenfeld G; Palliative sedation in dying patients: "we turn to it when everything else hasn't worked". JAMA. 2005 Oct 12;294(14):1810-6.
- Mercadante S, Porzio G, Valle A, et al; Palliative sedation in patients with advanced cancer followed at home: a J Pain Symptom Manage. 2011 Apr;41(4):754-60. Epub 2011 Jan 12.
- Claessens P, Menten J, Schotsmans P, et al; Palliative sedation: a review of the research literature. J Pain Symptom Manage. 2008 Sep;36(3):310-33. Epub 2008 Jul 25.
- Sykes N, Thorns A; Sedative use in the last week of life and the implications for end-of-life decision making. Arch Intern Med. 2003 Feb 10;163(3):341-4.
- Jones I, Kirby A, Ormiston P, et al; The needs of patients dying of chronic obstructive pulmonary disease in the community.; Fam Pract. 2004 Jun;21(3):310-3.
- Schwarz JK; Responding to persistent requests for assistance in dying: a phenomenological inquiry.; Int J Palliat Nurs. 2004 May;10(5):225-35; discussion 235.
- Treatment and care towards the end of life: good practice in decision making; General Medical Council, May 2010
- Bailey FA, Ferguson L, Williams BR, et al; Palliative care intervention for choice and use of opioids in the last hours of J Gerontol A Biol Sci Med Sci. 2008 Sep;63(9):974-8.
- Candy B, Jones L, Drake R, et al; Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev. 2011 Jun 15;(6):CD007617.
- Hynson JL, Gillis J, Collins JJ, et al; The dying child: how is care different?; Med J Aust. 2003 Sep 15;179(6 Suppl):S20-2.
- Hechler T, Blankenburg M, Friedrichsdorf SJ, et al; Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr. 2008 May-Jun;220(3):166-74.
- Thompson, Morton. Not as a Stranger ISBN 0013184466 Publ: World Books; Charles Scribner's Sons, New York. 1954. One of many novels by a doctor about a doctor
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. EMIS has used all reasonable care in compiling the information but makes no warranty as to its accuracy. Consult a doctor or other healthcare professional for diagnosis and treatment of medical conditions. For details see our conditions.
Dr Laurence Knott
Dr Laurence Knott
Dr John Cox