End-of-Life Care

Dr Elizabeth Hepburn (IBVM)
Issue 17, November 2005

In Australia there has been a move in public hospitals to encourage the formulation of advanced care directives through a programme known as 'Respecting Patient Choices'. This programme has prepared a patient information sheet and also instituted a process by which the matters canvassed could be discussed with trained personnel. In its inception it has much to recommend it.

In the midst of this activity there were the disturbing cases of Terri Schiavo in the United States and of Maria Korp in Melbourne. In both cases the decision to remove a feeding tube (PEG tube) had to be made in the absence of any clear statement of the patient's own preferences. These had the effect of stimulating public interest in the matter.

At the same time a large Catholic hospital had submitted their own version of Respecting Patient Choices to their local bishop for approval. He decided to submit the document to the Australian Catholic Bishops' Conference (ACBC), Doctrine and Morals Committee for advice. This committee decided that since the issue was also current in other states, they would prepare a document for national use. This document was to be published jointly by ACBC and Catholic Health Australia (CHA).

The members of the ACBC Doctrine and Morals Committee considered that Respecting Patient Choices did not go far enough, noting that while it canvassed choices, it lacked mention of the fact that choices might be good or bad. They wanted a document that would give reasons for evaluating decisions. This document would also refer to the Code of Ethical Standards published by Catholic Health Australia (CHA) and approved for use in Catholic hospitals throughout Australia.

The document, titled Planning My Future Medical Care, consists of four sections:

Introduction and Guiding Principles
Planning for one's future health care
A model for an Advanced Care Plan Statement
Implementing an Advanced Care Statement and Professional Integrity

Introduction and Guiding Principles

The introduction deals with the reasons why advanced care planning has come to occupy the minds of many health care administrators and practitioners. Planning for one's future healthcare needs is an important aspect of the responsible stewardship of the gift of human life. The document points out that while choice is the right of the patient, there is a moral dimension to our choosing.

The principles which govern our choices are the subject of specific Church teaching and as the vehicle for health and aged care our hospitals and aged care facilities are both guided by these principles and offer insight into choices for both carers and those who receive our care.

The Catholic tradition has always emphasised that life is a gift, not a possession and that we should consider very carefully how we respond to this endowment. We have respect for life and a responsibility to take prudent care of the gift, seeking assistance when sick and generally looking after our own well being. This prudence suggests that we may want to make our preferences for treatment known in case we are ever incapacitated to the extent that we are unable to communicate.

There are limits to human life and we must distinguish for ourselves and for those charged with our care to say where these limits lie. While there is a presumption in favour of preserving life there is also a point at which we accept that this is the end of this stage of our journey. In medical terms when a treatment is futile or disproportionately burdensome it is unethical to persist; in ethical terms the treatment is deemed 'extraordinary' and there is no obligation to continue pursuing cure. The obligation to continue care is always present. However, we do not subscribe to a 'life-at-any-cost' ethic.

Clearly, there are times when the distinction between 'killing' and 'allowing-to-die' are equivalent but this is not always the case. As Gillon [1] pointed out, although all acts of killing a patient are wrong, so are some acts of letting a patient die. The Papal definition of 'extraordinary' and 'ordinary' is an attempt to guide us through this maze.

Pope Pius XII made the following contribution:

...ordinary means – according to circumstances of persons, places, times and cultures – that is to say, means that do not involve any grave burden for oneself or another [2] .

Generally, this is interpreted to mean that no one is obliged to submit to a treatment which would be disproportionately burdensome – physically, psychologically, financially, even if the treatment was life saving. It implies that the person best fitted to make such a judgment is the patient. It is consistent with our claim that life is eternal and that the best is yet to come.

Planning for one's future health care

In this section the document presents a number of differing scenarios in which it might be helpful for the person concerned to have made a clear statement of preferences for the kind of care they want. This can be done in a number of ways, orally or in writing. Many people simply trust their families and healthcare professionals to do what is best for them and this is entirely legitimate. However it is done, communication between a person, their family, friends and healthcare professionals is invaluable since good care depends upon trusting collaboration. It is best that the communication occurs by means of many conversations over the years.

The document notes three different ways in which a person's wishes might be recorded: medical record, nomination of a specific person with "medical power of attorney", or statement of future care wishes. It canvasses the issues which need to be addressed including the need for patients to reflect on the kind and extent of the burdens they would or would not want to experience or have others experience. The document notes that euthanasia is both illegal and immoral.

A model for an Advanced Care Plan Statement

A two page model is then offered as a guide to the preparation of an advanced care plan. The model assists each person to state positively their wishes for future care and includes space to make a personal statement regarding what would be considered ordinary and non-burdensome treatment in regard to the person's circumstances.

It is recommended that copies of such a statement be given to one's doctor with a request that it be made part of medical records, to one's agent or representative, to one's family and to one's health or aged care facility. In other words, that the matter of the document be made public so that no one who is likely to be concerned about end-of-life decisions is in doubt as to a person's wishes.

Implementing an Advanced Care Statement and Professional Integrity The final section is primarily addressed to health and aged care practitioners. It suggests that the implementation of a directive will be made clearer if the following questions are considered:

Do the present circumstances correspond to the circumstances envisaged at the time when the person recorded their wishes?
Do the treatment and care options available correspond to those about which the patient made their statement?
Do the effects of implementing the patient's wishes correspond to the effects that the patient understood would be their consequence?
Are there new or changed factors in the present circumstances which the patient may not have taken into account but would have wanted to be considered in the present circumstances?

The document addresses legal and ethical constraints on the course of action and also speaks of the principle of beneficence which seeks to promote actions in 'the best interest' of the person in our care. Finally, the document refers the reader to the Code of Ethical Standards, published by CHA in 2001.

Conclusion

The draft document is currently being circulated for comment. The final document will be presented to the ACBC and the Board of CHA for approval. The hope is that as well as providing useful information, the document will stimulate conversations about future medical care, and provide clarity for health care professionals involved in end-of-life care.

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Dr Elizabeth Hepburn (IBVM) is a Loreto sister, currently working in Canberra as Director of Ministry & Ethics for Catholic Health Australia. She is the former Director of the Queensland Bioethics Centre and author of the book "Of Life and Death: An Australian Guide to Catholic Bioethics".

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[1] Gillon, R. (1988) Euthanasia, Journal of Medical Ethics, 14, 115.

[2] Jura et Bona and reiterated by John Paul II in Evangelium Vitae, n.65.