Bioethics Matters: End of Life Decision-Making and Advance Care Planning

End of Life Decision-Making and Advance Care Planning
Moira McQueen, LLB, MDiv, PhD

1. When is it right to discontinue life sustaining treatment either for myself or for a family member?

Is this the same as euthanasia?

Discontinuing life sustaining treatment is appropriate for two major reasons:

One, if it is clear that no cure is going to take place and the illness is irreversibly leading to death, then a decision to stop such treatment would be morally acceptable. This is seen as being realistic about the situation when medical treatment is futile, including the use of extraordinary or disproportionate means. The person is not morally obligated to use such means, especially once it becomes clear that they are mainly serving to prolong life. Catholic teaching does not require people to use such means to prolong life indefinitely, and a person who chooses to discontinue is now facing the reality of death and can prepare for that.

Two, if the result of using life sustaining treatment is deemed overly burdensome to the person using it, then he/she can make a subjective decision to discontinue the treatment. One example would be about a person who has undergone years of dialysis for kidney disease. The effort in maintenance of the treatment, the lack of any curative possibilities and/or the limitations on one’s personal life because of the nature of the treatment could lead a patient to tire of the struggle and decide to stop it. Catholic teaching accepts this type of decision as morally right in the circumstances.

In fact, the same two points are sometimes used in making a decision not to start such treatments in the first place, and this is also morally acceptable.

This differs completely from euthanasia since it is not about ending life deliberately, but is about accepting the probable onset of natural death and facing that reality with a good conscience.

2. Am I able to make my wishes known for a time when I am unable to decide for myself?
Yes, we are encouraged to do so, first, because it is important for us to be reassured that our wishes will be respected, and second, because it will be very helpful for those whom you will have designated to carry out those wishes. It is important to have discussed your wishes with the person or persons who will make decisions for you if and when you can no longer do so yourself, so that they are clear about procedures that you would or would not want to have done.

3.  What kinds of legal documents should a person have?
Many people have a will drawn up by a lawyer to take care of and distribute their estate, while others write out their own wishes about their property and about the care they desire at the end of life. In Ontario there are two popular documents: “Power of Attorney for Property” and “Power of Attorney for Health Care,” both available online from the Office of the Attorney General. You name the person or persons whom you wish to speak for you about these matters if and when you can no longer do so, and, if the form is completed properly, those persons will have the legal authority to make decisions for you and on your behalf.

Strictly speaking these steps are not necessary since, if you do not appoint anyone, the Substitute Decision Makers Act of 2004 designates someone for you, beginning with immediate members of your family. Many people, however, prefer to have this matter settled in advance and then they know it will be taken care of without any delay or possible problem.

4.    When and how can I arrange end-of-life matters?
Many practical matters can be seen to while we are still active and aware. Many people make a will, pre-plan their funeral, appoint someone (or more than one) to be their Power of Attorney. These are actions which help us to be in control of our demise, and also make sure that our wishes will be taken into account by those we have asked to speak on our behalf, if and when we become unable to do so for ourselves.

From a spiritual point of view, if we are members of a church, it is important to keep the church informed of health matters, to request parish visitation where provided, and to enable church members to pray for us, to receive the Sacraments, etc.

5.    What is an advance directive/care planning?
Making an advance planning directive of any kind means that we can express our wishes for future treatment in the event of our not being capable of making or communicating these wishes. We should choose someone competent to speak on our behalf, who will make wise decisions in specific circumstances that arise. For example, some people are concerned that heroic measures might be taken that will leave them in a condition that they might reject if capable, e.g., leading them to survive through the use of extraordinary means when there are already other serious, underlying illnesses which are life-compromising. It is clearly important that there is a conversation with the person chosen, that he or she agrees to act on our behalf and understands our wishes as far as possible.

6.    Is an advance care directive legally binding?
Advance care directives should be dated AND signed by you, with two people as witnesses to your signature if the document stating your wishes is to have full legal authority. If you are not able to speak and consent for yourself at a certain stage then the wishes expressed in your legal directive are to be carried out as closely as possible by your substitute decision-maker. The substitute decision-maker is legally obliged to follow your directive, showing the importance of having full and frank discussions of those wishes while we are alert and able to do so.

Although discussing death can be difficult, it is a compassionate as well as practical matter to engage in, since it relieves the decision-maker of guess-work and wondering what the person would want at end-of-life, a time that can be as hard on the decision-maker as on the dying person, given the emotions involved in dealing with people we love.

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Bioethics Matters