Withdrawing and Withholding Treatment
A bulletin from the Medical Ethics Alliance, a group of Hippocratic and World Faiths doctors. It is based on submissions made in 1999 to the BMA’s consultation on withholding and withdrawing medical treatment. It is both critical and complimentary to the document ‘Withholding and Withdrawing life-prolonging treatments; a guidance on decision making’ published by the BMA in June 1999. It is intended as a contribution towards an ongoing discussion within the profession.
The decision to withdraw or withhold treatments is usually based on clinical considerations but certain ethical principles are involved. These principles will be discussed below. Many are also enshrined in laws and international treaties. They include a respect for life, sometimes referred to as the sanctity of life, arising from the concept that life itself is God-given. This right is central to the United Nations Universal Declaration of Human Rights and is also foremost in the European Convention of Human Rights. It has long been established in national law as the law of homicide.
The concept of justice is fundamental and the first consideration is to whom is justice owed? The U.N Universal Declaration of Human Rights makes this clear. It is owed to all members of the human family. No distinctions based on illness are made – justice is owed to all persons and embraces what is owed by way of action or restraint?
Within medicine there is also a strong tradition of ethics concerning obligations towards patients. This is what one must do as well as what one may not do. It is at the heart of the doctor\patient relationship. Justice also recognizes the fundamental equality, value and dignity of persons. These are not diminished by illness or disability. No person should be subject to arbitrary discrimination. In the medical context a judgement about a person’s essential worth should not be made on the basis of some quality that they may have, such as the ability to communicate or enter into a relationship with others. Lack of these qualities does not in themselves provide a reason for aiming to end their lives.
Who should receive assisted food and fluid
Any decision is likely to be clinically based and made on the basis of limited information. It may need to be adjusted as new evidence emerges. Two general principles may be taken into consideration, however. First is the patient in need of food and water given this way? Secondly would they suffer if it was not given? Very occasionally the risk to the patient or evident burdensomeness of the method of giving the food and fluid may make it contraindicated.
The discontinuation of assisted food and fluid does involve more than the emotional problems referred to in the BMA guidance and there are differences in law and medicine between a decision ab initio from one made after review. Leaving aside the legal requirements, which vary, between Scotland and England and Wales, when may food and fluid itself dependent upon a medical procedure be withdrawn?
The report of the Select Committee on Medical Ethics, House of Lords 1994 which followed the Bland Judgement, is helpful. Its conclusions were accepted by Parliament (but strangely are not mentioned in the BMA’s guidance). In its conclusion the report stated:
S285 ‘Development and acceptance of the idea that, in certain circumstances, some treatments may be inappropriate and need not be given, should make it unnecessary in future to consider the withdrawal of nutrition and hydration, except where its administration in itself evidently burdensome to the patient’.
We think this represents helpful and authoritative guidance. It also seems to be in conformity with the overwhelming practise of clinicians caring for p.v.s. patients.
It has been defined as an ‘easy death’ or as ‘mercy killing’. Here we will suggest the definition – the intentional killing by act or omission of a person where life is felt to be not worth living (CMF Bulletin No 7 1999)
To have as the intention, aim and object of taking life is contrary to justice and the doctor\patient relationship and is furthermore unnecessary because compassion does not require us to kill the patient to kill the symptoms. A respect for people is also to recognise that they are mortal. Ultimately death must be accepted and inappropriate treatment withdrawn.
Curing and Caring
The objects of medicine have been traditionally threefold. The restoration of health, even when this may only be partial, but which serves the patient’s well-being. The prolongation of life, but not by any or all means. A proportionality should be sought and a balance struck between the benefits to the patient and burdens of treatment. When death itself approaches the role of medicine changes towards palliative care. This is a holistic concept of relieving symptoms and offering spiritual and psychological support. Here the aim of treatment is to enable the patient to continue human flourishing through interaction with friends and family. When this is not possible the duty to care remains. There is never a duty to kill. (Reference Consultation – The Linacre Centre ’99).
Patient care is now usually delivered by medical teams. These comprise senior and junior doctors, nurses and paramedics and the carers themselves. When decisions have to be made, especially major management ones, these are best made by the senior doctor with the agreement of the rest of the team. It should not be forgotten that the nurses and carers are closest to the patient. It is important that all are comfortable with decisions. Members of the team with a conscientious objection to a course of action should not be overridden, least of all eliminated from that area of medicine or considered as acting anomalously. Issue must be taken with the BMA’s guidance document where doctors or others who rightly, in our view, continue nourishing their patients could be considered to be acting anomalously. Where grave issues are concerned and there is no agreement say between the medical team and the relatives or carers, the Family Division of the High Court is available to help. It should not be left to relatives to have to go to their own legal advisers. Trusts should come to their immediate assistance with appropriate advice as to where and how help can be obtained.
All patients have a general right to a second opinion if they are not in agreement with decisions regarding their treatment. They may, themselves, or through their relatives request this. It is not part of a doctor’s responsibility though to find another doctor to do something, which he himself considers medically or ethically wrong.
Doctors or nurses on the team may conscientiously withdraw if they are not in agreement with decisions taken. They should not be put under an obligation to prove that their objection is on conscientious grounds.
There is a large and settled body of medical opinion for administering food and water by such techniques as inserting a feeding tube or a percutaneous endoscopic gastrostomy (PEG). Since the Bland Judgement in 1993 only a tiny number of P.V.S. patients have had withdrawal decisions made in court. This may reflect difficulties in diagnosis or prognosis but in particular the views of doctors, nurses and relatives. It remains very uncommon to intentionally cause death by dehydration even in P.V.S. (C.M.F. submission to BMA 1999). In effect this reflects a strong view, which is at variance with that implicit in the BMA guidance document.
The duty of care requires doctors to treat patients in their best interests. This should normally be concerned with their restoration to health, prevention of death or disability and relief of symptoms.
Treatment choices depend upon free and informed consent. There is no obligation to treat in a disproportionate or burdensome way and indeed, futile treatments should be withheld or withdrawn bearing in mind that clinical situations change. ‘The art of medicine involves making decisions on limited amounts of information and expecting to adjust or correct them as new evidence emerges’
(CMF Bulletin No 7).
Advance Decision Making
This may be of a general nature and could be verbal or written. It becomes an advance directive seeking to bind when it takes the form of an advance refusal of treatment. Contrary to the impression in the BMA’s guidance, there is at present no case law on written advance refusals.
It seems likely that the patient would have had to have at least the competence necessary to make a valid will. That is to say not acting under undue influence and in health decisions, also possessing sufficient information to make a valid decision. The circumstances arising, in fact, must be those that were foreseen and where there is uncertainty, the treatment given should be that which is in the patient’s best interests. In practice doctors confronted with a document should treat the patient rather than the piece of paper. It is also the case that it is far more likely that if the patient suffers permanent harm that claims for damages will follow. When in doubt about the applicability or otherwise of an advance directive, it would be wise to seek legal assistance. Where the patient is unconscious the patient should be treated with a general presumption in favour of preserving life. (C.M.Q. Vol. XLIX No (280) 1998)
What about the Dying?
For the dying patient, fluids should be offered by mouth and in such amounts as the patient wishes. Other forms of administration may be required but in accordance with the needs of patient comfort rather than to maintain organic systems per se.
Some reasons why a doctor may decide to avoid, delay start or stop particular treatment
|There is no reason to think that it will help||The patient is showing some signs of recovering, in which case wait.||It seems likely to help and risks are small compared to the likely benefits.||The patient is not showing any improvement after a reasonable amount of time.|
|It might help but cause serious harm as well||If the recovery does not continue then treatment could start||While it is uncertain whether the treatment will help, give it a try and be prepared to stop if it does not work.||It is harming more then helping.|
|The patient refuses treatment.||The treatment only works for a limited period and then becomes ineffective or damaging.||Though unlikely to help, the patient may be one of a minority who could respond and the risk is small.||It was an experimental treatment and has failed.|
|The patient is already getting better.||Symptoms are transitory but may indicate disease, so keep the tablets with you and take if the symptoms reappear.||The patient is dying and the treatment is not one to ease.|
|The nature of the illness is unclear.||Patient asks for treatment to stop.|
The Hippocratic moral tradition and the insights of the Major World Faiths reinforce one another. The ethical framework of medicine crosses frontiers and contains ageless concepts. The conscientious doctor will seek to act with inner integrity and within an ethical frame. Law is not a substitute for ethics but through the Law, society protects the vulnerable and the common good. The Medical Ethics Alliance wishes to study these matters and offer a focus for continuing debate within the profession and society.