This topic is one that I have thought about often and researched, and I have some very specific and personal thoughts, which I feel compelled to share. There is certainly a legal component, but also deep and philisophical aspects.
As part of a complete estate plan, clients will execute a Heath Care Proxy. This document appoints an agent who is authorized to make health care decisions in the event of incapacity of the principal.
The Health Care Proxy, however, is limited in that it focuses strictly on medical care, but not on other wishes you may have regarding your care as you near the end of life. It is just as important that your agent and others close to you understand your wishes with respect non-medical matters. It is crucial to have meaningful discussions with those on whose behalf you will be making decisions. There are many decisions to be made that go beyond an understanding of strictly medical matters.
Just as important as the medical care is an understanding of what the patient wants toward the end of life. While the patient is still mentally competent, ask the patient: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? What are your priorities beyond merely being safe and living longer? And what is the course of action that best serves this understanding?
These questions, and the responses to them, help the agent and the family understand the wishes of the patient separate and apart from the strictly medical realm. When does a patient cross the line from quality of life, to no quality of life? If quality of life exists, the patient may wish to continue treatment in order to maintain that quality. Quality of life means something different to each indivudual. Of course, the severity of the treatment must also be considered—will the treatment be so invasive or painful that quality of life is compromised? The decision is different for everyone, and it is crucial to understand not only what medical procedures are to be withheld or provided, but also to understand the patient’s fears, hopes and goals as they progress to the end of life.
Ultimately, everyone hopes for a good death, a death with dignity. Understanding the patient’s philosophies, fears, hopes, goals, and how to implement those, will guide the agent and the family when faced with making some very difficult choices. It is not only about medical interventions, but also about the decisions one must make in respecting the wishes of the patient. It is about death with dignity, however defined for each individual.