Editorial I

Live and let die? A structured approach to decision-making about resuscitation

P. Levack

Clinical decision-making is under attack. Such reports as ‘Cancer patient’s fury at doctor who "wrote her off" on hospital’s death ward’,1 and hospital found guilty,2 as ‘keeping Miss B alive was an unlawful act’, mean we could be forgiven for being confused (and defensive). We have taken off our white coats and first name terms are fashionable, yet the public and the profession are restive.

In the first case referred to above,1 a patient in her late sixties receiving chemotherapy for gastric cancer, was admitted to hospital with septicaemia. After treatment, she was ‘horrified’ to discover that ‘inappropriate for resuscitation’ had been written in her notes. ‘They were going to let me die,’ she is reported to have said. All the emotive elements were there—secrecy, paternalism, doctors yet again acting as gods, denial of choice, in an age when consumerism has itself become a god, and death itself—the real enemy. Age Concern saw it as an example of ageism in the NHS.3 At the heart of the ensuing uproar was the view that patients should have the right to decide whether or not there should be medical intervention.

In a swift political response,4 Hospital Trusts were directed to implement resuscitation policies based on the recently revised BMA/Resuscitation Council (UK)/RCN document.5

BMA/Resuscitation Council (UK)/RCN document (the Resuscitation document)

The aim of this document was to outline legal and ethical standards for planning patient care and making decisions in relation to cardiopulmonary resuscitation (CPR). It succeeded in addressing an emotive issue, but in trying to find common ground, compromised some ethical and legal principles, which prompted the Association of Palliative Medicine (APM) and the National Hospice Council (NHC) to issue a joint statement.6

The points causing the APM and NHC concern were:

1. The fall back position of the Resuscitation document is to attempt resuscitation, that is ‘there should be a presumption that health professionals will make all reasonable efforts to attempt to revive the patient’.

2. In making an advance decision that CPR will not be attempted (a do not attempt resuscitation order—DNAR), the Resuscitation document states ‘where competent patients are at foreseeable risk of cardiopulmonary arrest, or have a terminal illness, there should be sensitive exploration of their wishes regarding resuscitation. This will normally arise as part of general discussions about the patient’s care’.

3. The Resuscitation document suggests conflicting duties for doctors.7 ‘Doctors cannot be required to give treatment contrary to their clinical judgement, but should respect, whenever possible, patient’s wishes to receive treatment which carries only a very small chance of success or benefit.’

Let us consider these three concerns, with respect to clinical evidence, ethics and the law.

Resuscitation: clinical evidence

The indications for CPR, as for any medical intervention, depend on its effectiveness. This has been broadly classified by Warlow,8 as treatments which either:

(a) definitely improve outcome,

(b) do not improve outcome at all and should be abandoned,

(c) are simply dangerous and should be banned, or

(d) we are not sure about, but are promising and should be subject to further research.

When introduced 40 yr ago, CPR was intended to prevent premature death in previously ‘fit’ patients, who sustained a sudden cardiac or respiratory arrest. It was never intended to be part of every death,9 and yet it is now attempted in many irreversible situations, in which not surprisingly, it has shown little if any benefit.

The public and some health professionals, have an unrealistic perception of the benefit of CPR,10 and the idea that DNAR equates with abandonment of good medical care. A review of cardiac arrests in the most popular American television medical programmes11 (ER, Chicago Hope, and Rescue 911) found that outcome tended to be simplified to life or death, ignoring the real risk of disability or persisting unconsciousness. The majority of cases were young (children, teenagers, or young adults) and the majority of cardiac arrests were because of trauma (shootings, road accidents, drowning). Only 12% had underlying illness. In this fictional world, 75% of patients survived the arrest and 67% were subsequently well enough to go home. In a subtle way, as Diem says,11 ‘the misrepresentation of CPR on television undermines trust in data and fosters trust in miracles’.

In real life, the denominator is different. The average hospital patient is likely to be older, sicker, and with significant underlying disease. A more realistic UK figure,12 is a short-term success rate (defined as restoring arterial pressure for 1 h), in two out of five resuscitation attempts, and a one in eight long-term success rate (defined as well enough to be discharged). Survival is much worse for those who have underlying non-cardiac illness and/or poor performance status before the arrest.13 In patients with advanced malignancy, it is dismal.14

It is not the presence of cancer per se which is the issue, but performance status and extent of the disease. In a recent review of 243 cancer patients, who arrested in hospital,14 the most significant independent prognostic factor of survival was the nature of the arrest. Of those who arrested suddenly and unexpectedly, 22% (16/73) left hospital. Of those whose deterioration beforehand was gradual and unrelenting, none (0/171) survived (P<0.001).

Thus, CPR may be lifesaving in patients with a previously good performance status who have a sudden, unexpected event (Warlow group a). It will almost certainly not work and should be abandoned in patients with advanced cancer and those with extensive and irreversible underlying disease whose general condition is deteriorating (Warlow groups b and c). Finally, it may achieve an agreed benefit for other groups, which needs to be identified through further research (Warlow group d).

Thus, referring to concern number 1 of the Resuscitation document, the APM/NHC considers a presumption in favour of CPR is inappropriate for large groups of hospital in-patients. Secondly, the patients with whom discussion about CPR is to be encouraged (concern number 2), that is those who are at foreseeable risk of cardiac arrest or who have a terminal illness, are the group who are unlikely to benefit. The APM/NHC statement therefore, reaffirms there is no obligation to discuss CPR with those patients for whom treatment is judged to be futile.

Decision-making: ethics

Four ethical principles summarize our moral responsibility to others: beneficence (do good), non-maleficence (avoid harm), justice (effective medical interventions should be universally available), and autonomy (respect for individual deliberated choice and confidentiality).

Applying these to CPR, we have a moral responsibility to do good to others (beneficence); and to guard the patient and society against the unscrupulous application of medical technology of no proven benefit. CPR should, therefore, be carried out only when likely to be effective. Secondly, we have a moral responsibility to avoid harming others (non-maleficence). CPR should not be performed when it is neither clinically indicated, nor wished by the patient. A physician is required only to provide medical benefit to patients—no ethical principle has ever required doctors to do what is of no net benefit and is in the extreme, physiologically futile. In other words, withholding an ineffective intervention is ethically sound. Furthermore, providing it is degrading, unpleasant, and undignified. With reference to concern number 3 from the Resuscitation document, the APM/NHC reaffirms that no doctor can be required to deliver a treatment, which is not clinically justifiable.

Justice demands that effective medical intervention should be universally available. Hence, ineffective CPR fails justice criteria. And finally there is autonomy. A patient who might benefit from CPR, has the right to state in advance they do not wish it, even if it were medically appropriate. This does not imply a right to demand CPR, but the notion of autonomy has become so powerful that ‘its glare often blinds physicians’.15 Judgement demands we balance all ethical principles.

Decision-making: the law (UK)

Issues relevant to CPR are the concepts of best interest and capacity. Two new pieces of legislation are relevant: the Human Rights Act, 1998,16 and Adults with Incapacity (Scotland) Act, 2000.17

Although some cynics may choose to believe that best interest ‘is a phrase doctors use to justify pursuing their own’,18 the law clearly states that doctors have a legal duty to apply good medical practice in the best interests of their patient. No law has ever required doctors to do what is, on best evidence, extremely unlikely to achieve the intended aim. Indeed, where treatment is not necessary and not in the best interest of the patient, there is no authority for providing treatment (concern number 3), and in fact to do so could be considered assault. Applying the best interests test, as in the cases of Johnstone (Scotland),19 and Bland (England),20 it can be argued that it is not that the best interest may be served by the patient being allowed to die, but that it would be in their best interest not to be subjected to a medically futile CPR attempt. Article 3 of the Human Rights Act aims to protect patients from inhuman, degrading, or experimental treatment, and it could be argued that treatment which is not properly established, may be considered experimental.16

With regard to capacity, patients who have a cardiac arrest obviously do not have the capacity to consent or otherwise to treatment. The law is clear that the doctor is responsible for deciding, on the basis of the best interests test, what action to take. This considers medical evidence, and where relevant, the patient’s known views and/or the understanding that relatives may have, of what the patient may have wished.

Decision-making: the evidence

There is increasing evidence that patients wish to be more involved than their doctors think,21 22 and the GMC has set clear standards for doctors respecting the rights of patients to be fully involved in decisions about their care. However, not all patients feel comfortable being actively involved in decision-making.23 Furthermore, making decisions when well is different from making decisions when ill, frail or frightened, when it may be an intolerable burden.

Patients cannot choose to be involved, if they are not given enough relevant information. Certainly in cancer patients, there is overwhelming evidence that patients and their relatives want more information—90% say they want as much as possible, good, or bad.21 Yet it has not proved possible to answer the simple question ‘Does giving more information improve decision-making?’22 This is in part a result of the lack of randomized controlled trials, but perhaps there can be no simple answer, as it would imply some decisions are better than others.

Not everyone wants extensive information, at all stages of their illness, and the reasons for this are complex and human.23 It takes time to piece together the story of an illness in an understandable way, and patients may choose not to discuss it with us, or they may choose to discuss it today but not tomorrow. Meaningful discussion cannot take place if patients are in pain or symptomatic, and there is much evidence that symptom control is frequently poor in patients with advanced cancer.24

Does the threat of immediate death override all medical, moral, ethical, and legal considerations? In these increasingly fearful times, offering an almost certain futile attempt at CPR might seem preferable to risking litigation from a family who may wish it. However, decision-making for CPR is no different from that of any other medical decision, including the need for invasive investigations or unpleasant treatments.

CPR in advanced illness

Discussing CPR soon after admission (concern number 2) may be dangerous for us all. It distracts us from what is important, that is the diagnosis, the extent of the illness, and what we, and the patient, understand by their illness (prognosis). If we persevere with treatment, as if each intervention will be the answer, we will reach a stage when it becomes obvious that nothing else can be done for the patient. By this time, the patient may be too ill to discuss their care. Patients are often unaware how advanced their illness is, through denial (their choice), or lack of discussion (our choice), or because things are unravelling quickly. Some may never accept how ill they are, but in order to help patients to readjust to what is happening, they must be given the opportunity to discuss their situation earlier. We need to recognize the shift from curative to palliative management and in a recent systematic review of patients with advanced cancer,25 clinical judgement was only one of several independent predictors, which identified patients at risk of dying within 3 months. The time to learn that dying is a possibility, is not when one is burdened with a decision to sign up for CPR or otherwise.

Summary

The law and ethics as they stand provide a framework by which decisions about withdrawing or withholding treatment may be made.26 If there is nothing to suggest that an intervention is in the patient’s best interests, it is ethically and legally appropriate not to provide it. Already we are seeing some cruel, unintended consequences of CPR policies.27 The debate needs to be broadened,28 or the belief that death is accidental and not inevitable will prevail. There will always be some uncertainty and it would be more useful to ask doctors and patients what their understanding is, at each stage of the illness.

And there is always another side to the story. Perhaps patients are worried about the same issues as we are—that it is increasingly difficult to care in a more fragmented impersonal system. Faced with increasingly complex medical problems, we should not yield to policy, which we judge to be maleficent—it will make things worse.

P. Levack

Roxburghe House

Jedburgh Road

Dundee DD2 1SP

UK

References

1 Cancer patient’s fury at doctor who ‘wrote her off on hospital’s death ward’. The Guardian, April 13, 2000

2 Keeping Miss B alive was an unlawful act. The Times, March 23, 2002

3 The Beginning of the End to the Scandal of ‘Not for Resuscitation’. Age Concern England. Astral House, 1268 London Road, London; 2001

4 NHS Executive Resuscitation policy (HSC 2000/028) September, 2000 (England). Scottish Executive Health Department Resuscitation policy (HDL 2000/22), Edinburgh Scottish Executive; November, 2000

5 British Medical Association, Resuscitation Council (UK), Royal College of Nursing. Decisions relating to cardiopulmonary resuscitation: a joint statement from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing. J Med Ethics 2001; 27: 310–6[Abstract/Free Full Text]

6 Joint Working Party between the National Council for Hospice and Specialist Palliative Care Services and the Ethics Committee of the Association for Palliative Medicine of Great Britain and Ireland. Ethical Decision Making in Palliative Care. Cardiopulmonary Resuscitation (CPR) for People who are Terminally Ill. National Council for Hospice and Specialist Palliative Care Services, 34–44 Britannia St., London, UK; August, 2001

7 Randall F. Recent guidance on resuscitation: patients’ choices and doctors’ duties. Palliat Med 2001; 15: 449–50[ISI][Medline]

8 Warlow C. The scientific basis of clinical effectiveness: setting the scene. Proc R Coll Physicians Edinb 2001; 31: 9–12

9 Tunstall-Pedoe H. Do not resuscitate decisions. Resuscitation should not be part of every death. Br Med J 2001; 322: 102–3[Free Full Text]

10 Thorns AR, Ellershaw JE. A survey of nursing and medical staff views on the use of cardiopulmonary resuscitation in the hospice. Palliat Med 1999; 13: 449–50

11 Diem SJ, Lantos JD, Tulsky JA. Cardiopulmonary resuscitation on television. Miracles and misinformation. N Engl J Med 1996; 334: 1578–82[Abstract/Free Full Text]

12 Tunstall-Pedoe H, Bailey L, Chamberlain DA, Marsden AK, Ward ME, Zideman DA. Survey of 3765 cardiopulmonary resuscitations in British hospitals (the BRESUS study): methods and overall results. Br Med J 1992; 304: 1347–51[ISI][Medline]

13 Hilberman M, Kutner J, Parsons D, Murphy D. Marginally effective medical care: ethical analysis of issues in cardiopulmonary resuscitation (CPR). J Med Ethics 1997; 23: 361–7[Abstract]

14 Ewer MS, Kish SK, Martin CG, Price KJ, Feeley TW. Characteristics of cardiac arrest in cancer patients as a predictor of survival after cardiopulmonary resuscitation. Cancer 2001; 92: 1905–12[ISI][Medline]

15 Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med 1990; 112: 949–54[ISI][Medline]

16 Human Rights Act, 1998. The Stationery Office; October, 2000

17 Adults with Incapacity (Scotland) Act, 2000 Edinburgh: The Stationery Office; 2000

18 O’Donnell M. A Sceptic’s Medical Dictionary. London: BMJ Publishing, 1997: 145

19 Law Hospital NHS Trust vs Lord Advocate S.C. 301; 1996

20 Airedale NHS Trust vs Bland 1 All E.R. 821; 1993

21 Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer. Results from a large study in UK cancer centres. Br J Cancer 2001; 84: 48–51[ISI][Medline]

22 Sowden AJ, Forbes C, Entwistle V, Watt L. Informing, communicating and sharing decisions with people who have cancer. Qual Health Care 2001; 10: 193–6[Free Full Text]

23 Leydon GM, Boulton M, Moynihan C, et al. Cancer patients’ information needs and information seeking behaviour: in depth interview study. Br Med J 2000; 320: 909–13[Abstract/Free Full Text]

24 Twycross R, Harcourt J, Bergl S. A survey of pain in patients with advanced cancer. J Pain Symp Manage 1996; 12: 273–82[ISI][Medline]

25 Vigano A, Dorgan M, Buckingham J, Bruera E, Suarez-Almazor ME. Survival prediction in terminal cancer patients: a systematic review of the medical literature. Palliat Med 2000; 14: 363–74[ISI][Medline]

26 British Medical Association. Withholding and Withdrawing Life Prolonging Medical Treatment. 2nd Edn. London: BMJ Books, 2001; 65–70

27 Levack P, Cairns I, Dryden H, Guild P. Doctors’ management should not make things worse for patients. Br Med J 2002; 324: 172–3[Free Full Text]

28 Saunders J. Perspectives on CPR: resuscitation or resurrection? Clin Med 2001; 1: 457–60[ISI][Medline]





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