Respect at the End of Life

Do you sense a theme here?

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.

Ethical Wills

A typical estate plan includes, among other documents, a Health Care Proxy which guides the appointed agent in making decisions about end of life care. This document, however, is strictly legal in nature and does not allow the principal to express any other thoughts and wishes. 

Many who take the steps to establish an estate plan ruminate over how to communicate matters  important to them other than those strictly financial.  This may be done by an Ethical Will.

Unlike a "living will" or "last will and testament," an Ethical Will isn't a legally binding document. It could be a letter—ranging from half a page to a bound book—or a video recording, addressed to those parties with whom you wish to share it. There are no rules governing what goes into it, or when the contents should be shared with the heirs, but the idea behind it is simple: Convey values, not valuables.

Ethical Wills are becoming more common as a way to express non-legal thoughts. It is a letter or document in which you can set out other things that are or have been important to you during your life.

The Ethical Will is written for the benefit of the heirs, but the process can be very cathartic for the author as well.  The author has the opportunity to reflect on his life in ways he might otherwise never do.

Ethical Wills may take many forms.  One verson might be more formal, and include any or all of the following items, or any others not listed here with are important to you:

Your history, past and present.

            Your earliest memories and childhood.

            Your teenage years.

            College years.

            Early Adult years.

            Marriage.

            Children.

            Grandchildren.

Work

Travel

Your later years

Personal Values and beliefs

            At different points of your life, and why?

            What values resonate with you?

            What values are most important to you?

            Who taught you these values?

            What values do you wish to see in others around you?

            What values do you wish to leave to others?

Your hopes for the future

            Hopes and dreams for loved ones

            Family traditions to be continued

            How to help others     

            How to do good in the world?

            How to make a difference?

            How to find peace

Life lessons and achievements

Growth from losses and failures

Achievements and accomplishments

Gratitude:  what are you thankful for, and why?

Advice to your family and friends

Personal values and beliefs

Any closing thoughts

Another version may be more informal, and simply be an enumeration of things you would want others to remember about you.

In simplest form, an Ethical Will talks about quality of life issues, what constitutes a “good death”, and when that good death should be allowed to happen.  It provides guidance to your Health Care Agent which, in the context of a grave or terminal condition, expresses at what point you feel your quality of life would be so compromised, or non-existent, so that you wish further treatment to be discontinued.   In making such decisions, you might discuss with your doctor, and/or your loved ones, what fears you have, what your priorities are,

Ultimately, it can be whatever you choose it to be.  It may provide history, thoughts, feelings and hopes about your life and those you hold dear.  is a gift to your loved ones.