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Ethical Issues - End of life decisions

Issues that might present to a CEC

  • Do not attempt resuscitation(DNAR) orders
  • Advance Directives
  • Decisions to withhold or withdraw treatment

These issues are discussed below using a short hypothetical case to illustrate some of the points to be considered.

DNAR Orders

A “do not attempt resuscitation”, or “DNAR” order is an advance decision that Cardiopulmonary resuscitation (CPR) will not be attempted. The guidelines issued by the BMA RCN and UK Resuscitation Council sets out a framework for developing a policy for DNAR orders. It is important to consider not only whether CPR will provide a benefit to the patient, but also the potential harm that may be caused by CPR. It would not be in the patient’s best interests to prolong treatment where it is futile to do so. The importance of discussing the decision with the patient and/or their relatives is highlighted in the professional guidance.

Case study:

John is a 55 year old man with lung cancer which initially responded to chemotherapy but has now relapsed. He is now nearing the end of a trial of a new chemotherapy regime with no sign of remission of his cancer. In discussion with the medical team John expresses a belief that he may respond to treatment although his consultant has told him that no further chemotherapy is possible and that he has only a few weeks left to live. As a result of his advanced disease, it is likely that vital organs such as his kidneys and heart will fail. The consensus of opinion from the medical team is that, if John has a cardiac arrest while on the ward, attempts at resuscitation would not be appropriate. This is because it is highly unlikely to be successful and it would inflict damage because of John’s fragile ribs (he has secondary deposits of cancer in his ribs) and because he will die very shortly from his cancer. After discussion with his consultant John says he wants everything done for him, including CPR.

Should John be given CPR in the event that he suffers a cardiac arrest?

At first glance this case seems to be a conflict between John’s autonomous choice and the objective view of the clinicians regarding his best interests. However further exploration of the clinicians’ reasons for not wishing to attempt CPR and John’s reasons for his choice is required.

If the clinicians think that CPR would be futile this raises questions about what is meant by futile treatment and how different people would regard the predicted level of success or failure in this case. For John, even a small chance of success may be seen as far from futile if he has the chance of another week of life.

In considering John’s autonomy it is necessary to know if he has understood what CPR entails and the likelihood of success or failure. Is he making an informed choice?

In considering his best interests, have the clinical team taken into account his personal perspective? Perhaps his daughter is getting married next week and he wants any chance, however small, to be able to see her married.

Should the possible effects on medical and nursing staff of attempting CPR on a patient with virtually no chance of success be considered? It maybe that with fuller discussion between John and his clinicians a consensus view will be achieved. If this is not possible, the joint BMA, RCN, and UKRC guidance advises that the patient’s wishes should be respected but that, in the event of a cardiac arrest occurring, the decision about precise measures to be taken should be made by the clinician.

Doctors cannot be required to give treatment contrary to their clinical judgement, but should be willing to consider and discuss patients ’wishes to receive treatment, even if it offers only a very small chance of success or benefit. Where attempted CPR has a reasonable chance of successfully re-starting the heart and breathing for a sustained period, and patients have decided that the quality of life that can reasonably be expected is acceptable to them, their wish for CPR should be respected.  (section 7.2)

Advance Directives

An advance directive, (also known as a ‘living will’) is a statement made by a competent adult about the way he/she wishes to be treated if, in the future, he/she becomes incompetent and therefore unable to make a valid choice as to treatment. As competent adult patients have a right to refuse medical treatment an advance directive is a way of prolonging autonomy. An advance directive cannot request treatment that is not in the best interests of the patient. The Mental Capacity Act recognises advance statements   as legally binding if valid and applicable. However the Act specifies advance refusals of treatment.

Conditions for a valid advance refusal of treatment:

  • The advance refusal is made by a competent adult (18 and over).
  • It is entered into voluntarily - the individual was not coerced into making the statement.
  • The individual is sufficiently informed about the medical prognosis if the advance refusal is respected.
  • It is applicable to the circumstances that arise.

In general an advance refusal of treatment does not have to be written in order to be valid. However refusals of life sustaining treatment have to be written, signed and witnessed and specify that the treatment to be refused is life sustaining. Questions that a clinician or clinical ethics committee may need to consider:

  • Does a patient have a valid advance directive?
  • Is the advance directive applicable to the circumstances of the case?
  • Is there any evidence that the patient has revoked the advance directive or changed their mind?

Case Study

Mr Z made a written advance directive 5 years ago. Mr Z suffers from chronic obstructive pulmonary disease and the advance statement provides that if he is admitted in respiratory failure he will not be ventilated. The advance directive is placed in his notes. Mr Z is brought into A&E in respiratory failure and is acutely confused because of low oxygen levels in his blood. He says that he wants ‘everything done’ in order to save him. The doctor in charge of his care decides to ventilate him.

What issues should an ethics committee consider in reviewing such a case?

The advance directive was an exercise of Mr Z’s autonomy and an expression of how he wanted his future to be shaped in circumstances where his autonomy would be restricted by ill health. The principle of respect for autonomy requires that the advance directive be respected, if it was written as an autonomous act (if he was competent, free from coercion and had enough information to make the decision) and if it is still an expression of his true wishes.

Mr Z appears to contradict his advance directive when admitted to hospital semi conscious. The question is whether his current wishes should override his previously made advance directive. If he was fully conscious this would clearly be the case. A competent patient can change his/her mind about treatment at any time. If Mr Z is semi-conscious he may not be considered competent to make decisions about treatment, precisely the circumstances that the directive was meant to cover. However, assessment of competence in these circumstances is difficult and ignoring his currently stated wishes will have serious and possibly fatal consequences.

This is a difficult conundrum and perhaps the best solution where there is a real issue about the validity of a revocation of an advance statement is to take the course that preserves future choice for the patient. If Mr Z’s life could be saved by accepting his most recent statement of wishes then this preserves a future choice. This approach is reflected in professional guidance.

GMC Treatment and care towards the end of life 2010
Para 73 If there is doubt or disagreement about the validity or applicability of an advance refusal of treatment, you should make further enquiries (if time permits) and seek a ruling from the court if necessary. In an emergency, if there is no time to investigate further, the presumption should be in favour of providing treatment, if it has a realistic chance of prolonging life, improving the patient’s condition, or managing their symptoms.

Some clinical ethics committees have been involved in developing policies on advance directives. An example of such an exercise and the ensuing policy is described by Stephen Louw, Chair of Freeman Hospital Clinical Ethics Advisory Group in the section on Committee Functions.

Decisions to Withhold and Withdraw Life-Prolonging Treatment

Difficulties may arise for clinicians treating patients at the end of their lives, whether children or seriously ill adults, who are unable to make decisions about continuation of treatment – is it in the patient’s best interests?

The Mental Capacity Act 2005 has a ‘best interests checklist’ to guide clinicians and others making decisions for a person who lacks capacity. They should make reasonable attempts to seek the views of family and other carers of the person who may be able to provide information about the patient’s previous wishes, views and values. Unless someone has a Lasting Power of Attorney to make decisions for the patient then these discussions are for information sharing and not for the family to make a decision on behalf of the patient (see section on the Mental Capacity Act).

Where the patient is a baby or young child then the parents make decisions about treatment in the best interests of the child. If there is a difference of opinion between the parents and clinicians about what is in the child’s best interests then it may be necessary to ask the court for guidance The key factor in considering whether treatment should be provided or withdrawn is an assessment of the benefits and burdens of treatment. Criteria for deciding best interests are the same as for adults and include the ability to interact and the capacity for self-directed action and whether there will be suffering of severe unavoidable pain and distress (Section 14 BMA Guidance for decision making, Withholding and Withdrawing Life-prolonging Medical Treatment).

In the case of Re J (1990) the court considered whether, if treatment were provided, the patient’s life would be “so afflicted as to be intolerable”. If so, then it would not be in the patient’s best interests to provide treatment.

The GMC guidance Treatment and care towards the end of life 2010 sets out a decision making model for end of life care when a patient lacks capacity (paragraphs 15 and 16)

Case Study

Baby C born 8 weeks prematurely and contracted meningitis soon after birth. As a result she suffered severe brain damage and an inability to respond to stimuli. She was receiving artificial ventilation. The treating team thought that it was not in the baby’s best interests to continue with artificial ventilation, without which she would die within an hour. With continuance of such treatment she would live for at most one year, probably experiencing pain and distress. For religious reasons her parents could not agree to withdrawal of treatment.

What issues should an ethics committee consider in reviewing such a case?

Withdrawal of treatment will result in the death of baby C. On the other hand continuance of artificial ventilation would mean the continuance of suffering. Although the principle of sanctity of life is a fundamental consideration it is not an absolute principle and the duty of beneficence, doing the best for the patient, may lead to the conclusion that continued treatment is not in the best interests of baby C. Legal cases have indicated that it would not be in the best interests of the baby to continue treatment in order to prolong a life where suffering is intolerable (for the baby). (See above, Re J 1990).

The parents should decide on the course of treatment that is in the best interests of their child. However, they cannot, for religious reasons, consent to withdrawal of treatment. If clinical opinion concludes that the suffering baby C would endure with treatment would be intolerable, then there is a potential for conflict with the parents.

‘Best interests’ is not purely an assessment of medical interests and although consideration of the parents views of the interests of the child is an important part of the assessment these views cannot determine the course of treatment to be followed. GMC guidance addresses this difficulty of conflicting views of best interests in the case of children.

GMC End of life care
108 If disagreements arise about what course of action would be in a child or young person’s best interests, it is usually possible to resolve them by, for example, involving an independent advocate; seeking advice from a more experienced colleague; obtaining a second opinion; by holding a case conference or ethics consultation; or by using local mediation services. If, after taking such steps, significant disagreement remains, you should seek legal advice on applying to the appropriate court for an independent ruling. Approaching the court should be seen as a constructive way of thoroughly exploring the issues and providing reassurance for the child and parents that the child’s interests have been properly considered in the decision.

Another consideration in a case like this is the use of limited health care resources. If this baby continues to be ventilated with no chance of recovery, then an intensive care bed will be required. The demand on intensive care beds is great and this may mean that another child requiring a bed will need to be moved to a different unit, possibly reducing their chances of survival. How can a just use of resources be included in the assessment of what would be the right thing to do in this case?  The GMC offers some guidance

GMC End of life care

37 Decisions about what treatment options can be offered may be complicated by resource constraints - such as funding restrictions on certain treatments in the NHS, or lack of availability of intensive care beds. In such circumstances, you must provide as good a standard of care as you can for the patient, while balancing sometimes competing duties towards the wider population, funding bodies and employers There will often be no simple solution. Ideally, decisions about access to treatments should be made on the basis of an agreed local or national policy that takes account of the human rights implications. Decisions made on a case by-case basis, without reference to agreed policy, risk introducing elements of unfair discrimination or failure to consider properly the patient’s legal rights

For an interesting discussion of the issues arising when a patient in intensive care is declared brain stem dead but according to the family’s religious beliefs is still alive and should continue to receive treatment: see
Brain stem death: managing care when accepted medical guidelines and religious beliefs are in conflict Inwald, Jakobovits, Petros, Fisher,and Raper, BMJ, May 2000; 320: 1266 - 1268.