End-of-Life Care and Advance Directives: What are your wishes?

End-of-Life Care and Advance Directives: What are your wishes?

For a diversity of reasons, many of us are unwilling to properly contemplate our own beliefs and preferences concerning the subject of end-of-life care. Some of us are young enough that we have no sense of our own mortality – we are invincible and have the advantage of a seemingly infinite time horizon to get serious about the serious stuff. Others of us are older and although we want to be responsible adults and save our families from the stress of making life and death decisions on our behalf, we also worry that we may be tempting fate by making plans. The same holds true for those of us suffering from chronic and/or terminal illness. At the end of life, whenever and however that may unfold, the best that we can hope to achieve is death with comfort and dignity, in whatever manner each of us conceives of that. There is quite possibly no more important issue about which to exercise self-determination. For this reason, for the purposes of enshrining our end of life preferences, so there may be no doubt of our wishes, everyone should have an “Advance Directive for Healthcare” or “Living Will”.

At present, there is no legislation in Bermuda governing the form, content or validity of an Advance Directive. It is even questionable as to whether we really require legislation. Ours is a tiny island community, with only one hospital. Ensuring the information is made available to the relevant parties, in a coherent form, is entirely manageable. If care is being provided overseas, the chances are good that you will be required to complete an Advance Directive by the relevant hospital. It is probably also true to say that even if not legally binding overseas, a Bermuda Advance Directive made available to the overseas hospital will be of persuasive value in circumstances where you are unconscious or have lost capacity and are not able to execute a new one.
The day may come in the future where Bermuda enjoys a fully integrated national health records system providing access to your Advance Directive (or the healthcare preferences expressed in your Advance Directive) to all relevant health care professionals. In the meantime, you need to make sure your wishes are communicated to family, physician and the hospital. There is no necessity to see your lawyer, although your lawyer can certainly assist you in preparing an Advance Directive and will likely recommend it as part of your wider estate planning. Revisiting your wishes is also recommended from time to time. A form of Advance Directive can be obtained from the Bermuda Hospitals Board and, in the case of a sudden hospital admission, should be requested.

To make end-of-life care decisions, it is important to be fully informed about treatment options and for these purposes, a discussion with your physician is the best starting point. Ask questions to help you establish your views on things like artificial nutrition and hydration, cardiopulmonary resuscitation and mechanical respiration. How do you feel about the use of antibiotics, blood transfusions and surgery? What circumstances do you perceive as sufficiently intolerable to refuse extreme treatment measures? Is it necessary that you be in a coma, or have a terminal condition or is it enough that you are in extreme pain? The boundaries of when enough is simply “enough” will be different for each of us.

There are additional items for contemplation, for example palliative care and alternative medicines. Though not crisis issues, these subjects ought nevertheless to form part of the dialogue you have with your physician so that he or she has the full spectrum of your thoughts concerning treatment. Empowered by discussions had with your physician, the conversation must then be had with family members. You owe it to them to be clear and direct and they owe it to you to listen. Remember that it will be a source of reassurance and comfort to them to know that what happens at the end is as you wish it.

Your experiences of those discussions may help you in the selection of a Healthcare Proxy – the person or person who will make decisions on your behalf if you are not able to do so. Although it is possible to make an Advance Directive without appointing a Healthcare Proxy, you may end up in an unforeseen medical condition, or there may be a new treatment option not contemplated by your Advance Directive. In such circumstances, your family and healthcare team may be left without adequate guidance and direction.

What is of paramount importance in selecting a Healthcare Proxy is that he or she can bear the emotional responsibility of making treatment decisions on your behalf and will respect and enforce your wishes without regard to his or her own preferences. The fact that this can be a daunting task should not be underestimated and the choice of Healthcare Proxy, on reflection, may not be obvious. There are close family members who simply could not and would not wish to bear the burden. In the absence of an Advance Directive, it is your immediate family who will be called upon to make decisions.

The stress to both healthcare providers and family members of making crisis-point treatment decisions in a knowledge-vacuum is tremendous. Family members may experience the stress of being held “morally liable” for making a “wrong” decision. Healthcare providers suffer multiple stresses, from the stress of wanting to do right by the patient, but not receiving the support of the family; to wanting to be respectful of the family’s wishes; to knowing what the overall costs will be for unnecessary intervention; to inevitable considerations of professional liability.
We are all mortal. While we cannot avoid the fact that we will die, we can take steps to ensure we die with dignity, in accordance with our individual convictions and beliefs. Each of us has the right to make treatment decisions in accordance with those convictions and beliefs and to have those decisions respected by family and healthcare professionals. To do so, we must specifically address them, set them down in writing in a form of Advance Directive, have the document properly witnessed and make sure it is given to those who need to know our wishes – family, physician, hospital and lawyer. We all hope that we will be able to communicate our preferences personally right up until the end, but this is not always possible.

Finally, it is important to remember that there is another dimension to this issue. We know that Bermuda cannot sustain its current healthcare costs in the context of our aging population and diminishing workforce. Costs must be contained. It goes without saying that tremendous expense arises in life-sustaining measures taken where the patient probably would not have wanted them, but never expressed those wishes. We all pay for this in rising insurance premiums. In light of our aging population and the need to contain our national healthcare costs, discussion of end of life care must also become part of the our community dialogue.