Thoughts on the “End of Life”

 

What is your definition of death? Is it the same as “the end of life”?

End of LifeBased on survey responses from the participants in my seminars on the Bio-Ethics of Aging, the answer depends on whom you ask. What stands out, from their responses, is that discussions of end-of-life issues are fraught with potential for misunderstanding, as the same words mean different things to different people.

For example, most participants defined death in terms that pointed to the cessation of lung and heart function.  A few defined it as the cessation of brain function. Both are accepted medical criteria, but they can result in very different conclusions in different circumstances. Moreover, under current medical practice, policies and procedures to establish the time and fact of death may vary from state to state and from hospital to hospital within each state.

What counts, when you are facing the actual or imminent death of a family member is not your definition of death, but the opinions of your doctor and/or the policies of your hospital. Do you know what they are?

By contrast, the respondents offered definitions for “end of life” that covered a much broader spectrum.  A few individuals defined it in medical terms, often based on religious beliefs.  What I had not expected was that so many participants would define it in terms of the ability to engage in everyday activities—and that there were almost as many definitions as there were respondents to the questionnaire.

For example, some defined it in terms of the end of “useful life”—the inability to contribute in some way, be it financial, emotional, or simply helping with the grandkids. Others defined it in terms of loss of dignity, e.g., the point at which you can no longer take care of yourself. Some defined it in terms of the mental or physical capacity to participate in everyday activities at some—for the most part, undefined—level.

What was clear, from these responses, was that not being dead was not the same as being alive. But these definitions left many questions unanswered, and offered little guidance for someone having to make a decision about a medical treatment that would prevent biological death, but would not return your parent or spouse to the kind of life they wanted.

The issue matters.  I know from painful, personal experience that it is so easy, when you’re struggling to cope with a traumatic situation, to let your physician make all the decisions. When my mother fell and broke her hip, her Alzheimers had already advanced to the point where she could not reliably dress, bathe or get herself to the bathroom. She was not dead, but neither was she alive by her definition; her wish to be dead in that situation was very clear.

Even so, she was sent automatically to the hospital, where I seemed to have no choice but to authorize surgery to repair her hip, an operation from which she never recovered enough to even use a walker. She was even less alive than before the surgery.

The incident prompted my brother and I to research our options in the event of additional trauma.  Our decision, with which many may disagree, was that we’d keep her comfortable but would not authorize any treatment that required hospitalization or would delay the death she so clearly wanted.

When my mother’s physician disagreed, we found a new physician who shared our point of view.  To this day, however, I cringe to think of how it difficult it would have been for my brother and me if the first we learned of our doctor’s definition of “end of life” was when my mother was a candidate for treatment of cancer or a urinary infection … and when we did not yet know what our legal and medical options were.

If you’ve never talked about this with your family or your physician, maybe it’s time.  What most of us want, when an end-of-life occasion arises, is the ability to deal with an already difficult situation with love, compassion and the certainty that you are doing the “right thing.”  Are you prepared?

Comments

  1. My husband and I are 71 and 72. We are just now talking directly with our children regarding our wishes. We both have health directives but that doesn’t cover all that must be taken care of at the time of death. We talked about donation of clothing, inviting each of the children in to choose something that they would like to keep as a momento and assured them some items are specified in the WILL.

    We feel this is a good beginning…and incidentally–for me, end of life for me is when I can no longer contribute to society in any way; through memory loss or health issues. I am an advocate for the “Dying with Dignity” Act.

    • Mary Gottschalk says:

      Andi … I applaud your foresight. I also share your support for the Dying with Dignity Act … but I would like it to be more flexible with regards to people (like my mother) whose wishes are clear but who can no longer “speak for themselves” or who cannot self-administer the drugs.

  2. Mary, I have seen the tide turning within the medical profession in matters related to dying with dignity with the advent of palliative care teams, hospice and Ethics committees. The problem arises when people do not make their wishes known ahead of time and the medical staff -charged with saving lives-is left with having to decide who to resuscitate. The discussion needs to occur with the health care provider and family when the person is coherent and then it needs to be written down (Advanced Directives). No one likes to talk about death when in fact preparing for the inevitable is the wisest choice.Health care providers need to take responsibility initiating this conversation and patients and families need to continue the conversation in a way that honors the person’s wishes. I commend Andi and her husband for guiding and preparing their family in this matter.It’s a gift to their children.

    • Mary Gottschalk says:

      Kathy … I agree the tide is turning … but it has a long way to go, even if people did make sure to make their wishes known ahead of time. I keep hearing horror stories about people whose advance directives are ignored by doctors or children … or sometimes simple ignorance or poor procedures in institutional settings.

  3. I work with Hospice clients and you are so right. The differences are astounding.
    I believe in the Hospice approach. Comfort and dignity.

    • Mary Gottschalk says:

      Doreen … how lovely to see you here .. thanks for stopping to make a comment. I think Hospice is a marvelous institution, and I just wish more people knew what it does and how to make it work for them.

  4. Thanks for posting this Mary. Your insight is helpful to so many of us who will be dealing with these issues soon or are already embroiled. Considering that none of us gets out of here alive, it’s amazing how we shove the needed questions under the rug until it turns into a crisis.

    • Mary Gottschalk says:

      Thanks Richard … I don’t have “the” answers for everyone, and sometimes I’m not sure I have all the answers for me. I do know that I can get more people to consider even what their choices really are, I will have accomplished a lot.

      BTW … love your stuff on Burma … just haven’t taken the time to write a comment, but I will. I spent some time in the hill country in the early 90’s and it was a spectacular experience.

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