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Involving patients in discussions of do-not-resuscitate orders

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Anne McDermott, BA (Hons), RN, DipN, (currently studying for an MSc in Cardio-respiratory Nursing)

Senior Sister, Transplant Unit, Royal Brompton and Harefield NHS Trust, Harefield Hospital, Middlesex

Closed-chest cardiac massage was first described in 1960 (Kouwenhoven et al, 1960) as a means of restoring circulation in victims of cardiac arrest. The procedure described was to affect the lives of many thousands of people worldwide in the future.

The growth of modern technology, the increase in the number of specialised units, resuscitation training and the establishment of expert bodies has all contributed to a greater number of successful resuscitations (Hayward, 1999). Now most hospitals have resuscitation teams responding to all cardiac arrests unless a specific ‘do-not-resuscitate’ (DNR) order is in place. However, medicine has its limits. While these limits may shift with advances in technology and science, it is deceptive to act as though medicine can conquer all diseases and even death itself (Schneiderman, et al, 1994).

The public perception of cardiopulmonary resuscitation (CPR) has tended to be one of over- optimism; this is partly due to the inaccurate portrayal of resuscitation in television dramas where it is perceived as a heroic event in which the patient makes an amazing recovery (Birtwistle and Nielsen, 1998). Unfortunately, this is not reflected in the statistics of survival to discharge. In hospital cardiac arrests, on average, fewer than one in seven (15%) patients survive (Tunstall-Pedoe et al, 1992; McLauchlan and Wilson, 1998; Lawler, 1999), with some authors estimating a lower figure of one in 10 (Birtwistle and Nielsen, 1998). Better patient selection may improve outcomes, therefore CPR should be well targeted and those receiving it should have a reasonable expectation of survival (Marik and Craft, 1997).

This paper examines these issues in relation to adult patients in hospital.

The DNR order

Expert advice has been published by the Resuscitation Council (UK) (2001) regarding the use of advance DNR orders. They state that DNR orders should be made after consideration of prime issues: the patient’s known or ascertainable wishes; the likelihood of successfully restarting the patient’s heart and breathing and the patient’s human rights, including the right to life and the right to be free from degrading treatment (Box 1).

A DNR order indicates that cardiopulmonary resuscitation will not be initiated at the time of a patient’s cardiac or respiratory arrest, but does allow for all other medical interventions (RCUK, 2001; American Heart Association, 2000). In spite of this, some equate having a DNR order with the withdrawal or withholding of other medical interventions (Jezewski, 1994; Daly et al, 1996), which is not the intention. This lack of clarity causes fear among the general public.

There has been recent public concern about the use of DNR orders after several cases in which patients or their relatives have complained that resuscitation orders have been written in their notes without their knowledge or consent, particularly in the case of elderly patients (Rumbelow, 2000; Shah, 2000; Mayor, 2001). Two issues have emerged: first, that of covert decision-making and, second, that of ageism. Following much discussion in the media and involving Age Concern, the Department of Health issued a circular to all NHS trusts requesting that chief executives ensured that appropriate resuscitation policies, which respect patients’ rights, were in place (DoH, 2000). As Doyal (1993) stated, there is no convincing argument that competent patients have any less right to know that they are being considered for non-resuscitation than they have to other general information about their treatment options.

Some studies have shown that, with increasing age, CPR has poorer results (Valon and Fromm, 1996; Herbert, 1997); however, a more recent study by Gwinnutt et al (2000) showed that age was not a significant factor when looking at the outcomes of cardiac arrest. In line with this, other studies have concluded that patients over the age of 70 with little or no co-existing serious illness were as likely to survive as younger patients (Bedell et al, 1983; Tresch et al, 1994). Therefore age in itself should not be a contraindication to CPR.

Advance directives

An ‘advance directive’ gives patients the legal right to give, or withhold, consent to specific medical treatments prospectively (Diggory and Judd, 2000). Their use should ensure that health professionals are aware of individual patients’ wishes if their condition should deteriorate and they suffer loss of mental capacity. However, in 1998, a survey of 214 GPs found that only 49% were aware that advance directives carry legal force (Bowker et al, 1998). The British Medical Association (2000) published a code of practice which stated that competent informed adults have an established legal right to refuse medical procedures in advance and that, where valid and applicable, an advance directive must be followed. The use of advance directives in England is still in its infancy - they are rarely discussed in the media and one could speculate that very few patients and hospital staff are aware of their existence.

The Human Rights Act 1998

The Human Rights Act 1998, which was implemented in October 2000, represents a major development in the protection of individual human rights in the UK. Under this Act it is essential that decisions relating to CPR must be compatible with human rights. The aim of the Act is to promote human dignity and transparent decision-making.

Articles contained within the Human Rights Act (1998) that are particularly relevant to resuscitation are listed in Box 2.

Article 2 of the Act imposes a duty to provide adequate and appropriate medical provision to preserve life. Do-not-resuscitate decisions infringe the right to life; therefore health-care providers need to be able to justify these decisions. As Maclean (2000) pointed out, the right to life is protected only as far as is ‘reasonable’. Within this ruling, the European Court of Human Rights has recognised the concept of ‘futility’, meaning that a patient cannot benefit from a particular medical treatment. Futility-related decisions are medical decisions within the physician’s expertise and are based on scientific rationale (Luce, 1997).

Recent cases have highlighted the desirability of consultation with patients and their relatives before making a decision not to resuscitate. This particularly relates to cases where DNR orders have been written in the notes of elderly patients without their knowledge (Rumbelow, 2000; Shah, 2000; Mayor, 2001). This raises a number of important issues: the right to be involved in treatment/non-treatment decisions, failure to discuss a DNR order and the use of blanket non-treatment policies that discriminate against sectors of society that are unrelated to individual underlying pathology.

The Act allows a direct course of action against a hospital if it breaches any of the protected rights. Although the Act implies that patients must be made aware of a DNR decision and given the opportunity to discuss it, it does not give the individual the right to demand treatment. Hospital policies regarding resuscitation will need to respect patients as individuals and comply with the Human Rights Act, or else risk litigation.

Ethical considerations

Decisions about resuscitation pose many ethical dilemmas for those involved and should take into account the patient’s wishes, quality of life and prognosis (Birtwistle and Nielsen, 1998). The guiding ethical principles of non-maleficence, beneficence, autonomy and veracity can be used to help guide decision-making when resuscitation status is being considered.

The principle of non-maleficence states that harm should not knowingly be done to a patient or another person. Non-maleficence argues against performing CPR when the outcomes are harmful or when usage is inappropriate. Beneficence is the principle that dictates that a person should do right unto others and prevent harm (Edwards, 1997). Therefore beneficence supports the use of CPR when it is likely to be most effective. Autonomy refers to respecting a person’s individuality, and his or her right to make decisions about his or her health (Edwards, 1997). The principle of veracity requires an obligation to tell the truth.

Ethical theory and reasoning do not resolve ethical dilemmas but they do provide a framework for structuring and clarifying them.

Role of health professionals in decision-making

The primary goal of medical treatment is to maximise benefit and minimise harm. Doctors have traditionally focused on quantity of life and not quality, seeing a patient’s death as personal failure (McGraw, 1998). Medical paternalism asserts that beneficence can legitimately take precedence over respect for autonomy because professionals have superior knowledge to determine the patient’s best interests (Beauchamp and Childress, 1989). Paternalistic decision-making is inappropriate; patients have ethical and legal rights, which must always be considered.

Since 1993 in England the BMA has recommended that the hospital consultant should be involved in the majority of DNR orders (BMA et al, 1993). Dobson (1999) looked at the 1998 internal audit carried out at the Whittington Hospital five years after the guidelines were published and found that consultants were involved in only 9% of such decisions and that there was no record in any case notes of a discussion with the patient.

Some health-care professionals do not like to discuss end-of-life decisions with patients as they feel that such involvement may be harmful and upsetting in what could be their last days of life. However, evidence shows this is not the case. Loewy (1991) suggests that involving patients in resuscitation decisions is perhaps more painful for the health-care professional than it is for the patient; perhaps this could be a reason for the lack of open discussion.

The views of the medical and nursing team involved in the patient’s care are valuable in forming a DNR decision (RCUK, 2001). It is usually nurses who initiate the discussion regarding the resuscitation status of specific patients. This is probably because nurses spend more time with patients than other staff and are therefore more likely to observe any deterioration in their condition.

Role of the patient in decision-making

Although it would not be appropriate to discuss DNR orders with all patients, there are situations in which exploration of a patient’s wishes should be undertaken, especially with those in the latter stages of terminal disease who might be at risk of cardiac arrest (Jevon, 1999).

To be able to make autonomous decisions regarding resuscitation patients must have a realistic understanding of the process. It has been demonstrated that comprehension of the issues can lead to a significant decrease in consent to resuscitation in older people, especially when an advance directive could be utilised (Murphy et al, 1994).

Role of the family in decision-making

Family members currently have no legal authority to make decisions on behalf of adult patients who are unable to make decisions for themselves. However, should they wish to do so, relatives must be able to contribute to the decision-making process. Communication should help avoid unnecessary anxiety and stress. Box 3 contains some considerations for good practice. When quality of life is being considered and the patient is unable to express his or her views, the opinion of relatives may be sought regarding the patient’s best interests. However, relatives will not be able to demand treatment that the health-care team feel is wrong (RCUK, 2001). If the patient is incapable of making an informed decision then, ultimately, it is the medical team who will have the final say.

Conclusion

Preventing inappropriate resuscitation deserves closer attention. One strategy would to be to ask all patients during each hospitalisation about their preferences. However, a ‘cost’ of this strategy would be the immeasurable fear and anxiety caused to patients and perhaps their families, who had been urged to make decisions regarding cardiac events that may never occur (Stevenson, 1998). It would be more realistic to select patients who were thought to be at greater risk of a cardiac arrest.

Today, death is no longer the inevitable consequence of illness and disease. Modern medicine continually defies nature, particularly when the dying process has begun. But at what price? CPR can prolong the process of dying and deny patients a dignified and peaceful death (Jevon, 1999).

As patients live longer with chronic illnesses, for some death offers a welcome end to suffering. Good practice would adopt a collaborative approach, seeking the views of the patient, the relatives (when the patient is deemed unable to be involved) and the rest of the health-care team. Decisions must be based on individual circumstances and reviewed regularly.

To enhance this communication it is recommended that written information about resuscitation policies should be available to patients and relatives if required (DoH, 2000; RCUK, 2001). In light of the negative image that resuscitation issues have engendered, such information would demystify the process by which decisions are made, and therefore increase patient confidence. Staff must be able to answer questions and support patients and relatives.

In hospitalised patients, despite continued investment in training and equipment, the chance of a good outcome (discharge from hospital) following CPR remains low. Following in-hospital CPR there has been little improvement in the survival rate since the 1970s (Lawler, 1999). Given the invasiveness of CPR, the threat to dignity and the risks of partial survival or severe damage, earlier consideration should be given to use of DNR instructions in order to protect patients.

It is crucial to remember that health-care professionals have a duty to target resuscitation where is likely to do least harm and be of greatest benefit.

Further information

The Human Rights Act, 1998 (Chapter 42) is available at: www.legislation.gov.uk/acts/acts1998

 

 

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