What to do if your patient is going to die

Palliative care services are letting patients down. Scott A Murray and colleagues argue that we need to move from prognostic paralysis to active total care

Health, social, and palliative care services are continuing to fail many people with progressive chronic illnesses in whom death may be approaching, reflecting a failure to think proactively and holistically about their care.^w1 Such people could, however, readily be identified by clinicians asking themselves, “Would I be surprised if my patient were to die in the next 12 months?” For patients in whom the answer is no, delivery of patient centred active treatment and supportive care are needed.

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Nurses: the front line of palliative care

Prognostic paralysis has been described, whereby clinicians of patients with uncertain illness trajectories prevaricate when considering end of life issues.^w2 For example, one general practitioner graphically summarised the feelings many experience in caring for people with terminal heart failure: “You're paddling downstream to Niagara.” Another felt reduced to clinical tasks: “I feel impotent, merely a blood leech and monitor.”^w3 End stage chronic obstructive pulmonary disease is another example where patients seldom receive holistic care appropriate to their needs.^w4 Decision analysis in end stage renal failure should include the option of palliative care.^w5 Similarly, management of diabetes at the end of life may need to be altered to reflect different, more appropriate goals.^w6 To help overcome prognostic paralysis, quality improvement teams in the United States suggest that, rather than target patients who will die in the next six months, we should focus on those who “reasonably might die.”^w7 In the United Kingdom at least, opportunities now exist to initiate such an approach.

The new general practitioner contract has resulted in the establishment of many patients' registers, such as those for chronic obstructive pulmonary disease, ischaemic heart disease, and cardiac failure.^w8 Practices are now reimbursed for doing regular assessments and investigations, offering regular opportunities to identify those who may be entering the last months of life. When establishing these registers and reviewing those on them, clinicians should routinely ask the question of anticipated prognosis.

Community nurses are playing a larger part in caring for people with chronic illnesses. Practice nurses reviewing people annually, district nurses caring for housebound patients, and health visitors proactively visiting the elderly could all periodically ask themselves this question as a trigger to adopting a holistic palliative care approach. Palliative care in the community can thus become more extensive and proactive.^w9

How might patients and professionals feel about a more proactive approach to palliative care? The acceptance of palliation requires a joint signing up by professionals, the patient, the family, or other carers. Early recognition is necessary, but not sufficient, for effective care. Most people with progressive chronic illnesses have already brushed with death and have competing narratives in their minds. On the one hand they hope that their condition will not deteriorate, and on the other they acknowledge that death is inevitable.^w1 Greater awareness of these conflicting narratives should make it easier for professionals to combine active treatment and a supportive approach. People with disabling, progressive illnesses expect active care, but they also seek comfort, control, and dignity. The barriers to effective communication about emotional and end of life issues are well recognised. Doctors' concerns include causing distress, damaging hope, and having time for such discussions. Patients and families have equal problems.^w10 An individual approach to sharing information in the context of a good professional-patient relationship is key.^w11 Some opening questions that might help professionals start to explore these issues with patients who wish to do so are given in the box.

Estimating prognosis is an inexact science,^w12 but prognostic uncertainty should not prevent us talking with our patients about this issue, as a noteworthy number will die suddenly. We must not inadvertently fall into the trap of prognostic paralysis. So when we are next monitoring prognostic indicators and observe an irreversible decline, why not simply ask ourselves: “Would I be surprised if my patient were to die in the next 12 months?” And if the answer is no, we need to give the patient and his or her family an opportunity to plan for a good death, instead of just monitoring a downward set of physical variables until death.

Scott A Murray, clinical reader
Email: Scott.Murray@ed.ac.uk

Kirsty Boyd, honorary senior lecturer

Aziz Sheikh, professor of primary care research and development, Primary Palliative Care Research Group, Division of Community Health Sciences: General Practice Section, University of Edinburgh, Edinburgh EH8 9DX


studentBMJ 2005;13:133-176 April ISSN 0966-6494

1. Murray SA, Boyd K, Kendall M, Worth A, Benton TF. Dying of lung cancer or cardiac failure; prospective qualitative interview study of patients and their carers in the community. BMJ 2002;325:929-32.
2. Stewart S, McMurray JJV. Palliative care for heart failure. BMJ 2002;325:915-6.
3. Boyd K, Murray SA, Kendall M, Worth A, Benton TF, Clausen H. Living with advanced heart failure: a prospective, community based study of patients and their carers. Eur J Heart Failure 2004;6:585-91.
4. Gore JM, Brophy CJGMA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax 2000;55:1000-6.
5. Van Bliesen W, Lameire N, Veys N, Vancerhaegen B. From curing to caring: one character change can make a world of difference. Issues related to withholding/withdrawing renal replacement therapy (RRT) from patients with important comorbidities. Nephron Dial Transplant 2004;19:536-40.
6. Ford-Dunn S, Quin J. Management of diabetes in the terminal phase of life. Pract Diabet Int 2004;21:175-6.
7. Lynn J. Serving patients who may die soon and their families. JAMA 2001;285:925-32. British Medical Association. New GMS contract : “Investing in general practice.” BMA: London, 2003.
8. Murray SA, Boyd K, Sheikh A, Thomas K, Higginson I. Developing primary palliative care: people with terminal conditions should be able to die at home with dignity. BMJ 2004;329:1056-7.
9. Maguire P, Pitceathly C. Key communication skills and how to acquire them. BMJ 2002;325:697-700.
10. Kirk P, Kirk I, Kristjanson L. What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 2004;328:1343-7.
11. Cowie MR. Estimating prognosis in heart failure: time for a better approach. Heart 2003;89:587-8.

   

           

	Responses published this month

Articles	Responses
EDITORIALS What to do if your patient is going to die       Scott A Murray (April 2005)	Dr.Chandrakant Lahariya (April 29, 2005) Read this response

	EDITORIALS What to do if your patient is going to die       Scott A Murray (April 2005)
	Dr.Chandrakant Lahariya (April 29, 2005)       Lady hardinge Medical College ck1800@rediffmail.com
	You have written a wonderful artical on what to do if you know your patient is going to die soon. This is the actual scenario in all the countries in the world and amongst the medical fraternity as it appears by going by chaos toward the clinical cure of the patient, just symptomatic, if be it. We, as doctors, sometimes behave in a way that we are more interested in spreading magic and leaving people spellbound than what actually happens to the patient after the treatment given and a person is prognosticated as incurable. we want to spread the news that this particular, almost impossible, surgery was done at this particular institution but this is for mesmorisation only. This is my personal experience that this kind of apex institutions doesnt have any shame in throwing patients out the premises the moment it comes to know that patient is in terminal stage of his/her illness so to keep their mortality data on lower side. Its time we should realise that there is more to management of the patient than simply give some drugs or doing some interventions or keeping the hospital record. I would say that there should be defined policy guideline for multidisciplinary management of the person in terminal stage of diseases. Chronic diseases, which are on rampant, in developing countries and developed also and are the main cause of such diagnosis. as you have correctly mentioned that prognostication is not exact science, we should try to follow the normal protocol for treating the patients at the same time a Psychologist, a medical social worker along with relevent medical specialist should always be the part of such multidisciplinary team to provide moral support to the patient and his family.