Talking About End-of-Life Issues

by Mark Edinberg, PhD.
More About Mark…

When I was given this topic to write about, I started to make a list of the issues that I should discuss. The list has a lot of important topics, and I will discuss them. But the one thing I realized in making the list is probably the most important thing I think I have to say: These topics aren’t just for the end of life, even though many of them have to do with issues about the end of life. They really should be part of the life fabric of a family, not necessarily the focus of everything a family does, but rather part of how we live our lives fully. Making a will may not be something we do every day, but knowing that it is a responsibility we have and actually doing something about it is.

Wills. A will is a legal document that makes the specific wishes known as to how an individual wants his or her assets (estate) to be distributed. It also specifies who will be in charge of distribution of assets and who may control assets for others. Even if you don’t have a will, the state you live in has rules about how assets may be divided. Besides taking a lot of time and meaning that YOUR wishes are not being followed, not having a will means that YOUR wishes will not be respected after your (inevitable) death. I have read that a large percentage of people in the Untied states do not have wills, clearly they are not acting in their own best interest by avoiding this action.

How do you talk about wills? In part it depends on the emotional situation in your family. Obviously, if you haven’t talked to your older parents in 5 years, for example, starting the discussion about a will is not the best course of action. Similarly, if there is some mistrust of children by parents(or visa versa) the discussion may look like you are being greedy, wanting to know what you are going to get or trying to start a fight, make others mad, and so forth.

If you live in a family in which wills haven’t been discussed, it may just be the "way you work" or it may indicate some degree of distress over the topic or even some family resentments. The rationale for everyone having a will still stands, how to get there may be a tricky path to follow. I know of one case in which a parent had remarried when her daughter was in her 20s and she and her second husband had another daughter. The husband always felt that the first daughter was "not his". The only way the first daughter could find out anything about her parents’ plans for their will and estate was to get the second daughter to ask them directly and relay her the information. While not perfect, this method of communication did get the necessary information to all family members without creating dissention between generations.

The key is to be sure that you start the discussion and be clear about your own motivation, you are doing this for the benefit of the entire family.

Living Wills. Living wills, or advance directives, are a legally defined (by state) documents that specify in varying degrees what types of "extraordinary" measures one would want and NOT want to maintain their life. These documents are invaluable when an individual is in a coma or is otherwise unable to communicate what he or she wants for his/her care in dramatic health situations. I think every adult should have one. Otherwise, when someone, be it a parent, spouse, sibling or even an adult child, is in such a situation, decisions cannot be made in accordance with the person’s wishes, or, occasionally, in their best interests.

Talking about this document with your parents is relatively easier than perhaps ten years ago, when there was public awareness of it. The things that hold people back are fearing that somehow or other raising this means they want their parents dead, or that they may be seen as interfering in others’ lives. In fact, you are a part of their lives and I assume do not want to be left "holding the bag" with a life or death decision when you have no idea what the parent wants. If you are wondering how to raise this topic, the starting point is that you want your parents’ wishes to be upheld and, secondarily, that your parents have some responsibility to the family.

Medical Power of Attorney. Medical power of attorney refers to the power of an individual to make medical decisions for another person who is unable to make such decisions. This is an important part of making advance directives, but, again, is one of those topics that some people would rather avoid. However, even though it is uncomfortable to imagine a loved one not being capable of making medical decisions, it is absolutely better for the rest of the family if such a power is given. Your older relatives may well appreciate that they would be making life easier for their children and grandchildren if they thought about and acted on matters such as this one.

Burial plans. The average funeral in the Untied States can easily cost $5000 (including a burial plot). Many people do not either plan for their funerals or allocate funds for their funerals, although more and more are doing so. This is a tough topic to talk about with your parents, but if you don’t, you may be left (again) making decisions that may not meet their wishes. In addition, people are more likely to spend unnecessary funds "just to be sure" they are doing things in the most respectful way, when in fact, the parents would have rather had a simpler funeral and had their funds go directly to their descendants. Again, talking about funeral plans is uncomfortable because they imply that someone will die. Talking about them does not, however, mean that someone wants someone else dead!!! Rather, pre-planning is important for financial and "peace of mind" issues and should be presented that way, e.g. "Mom and dad, we’ve been thinking about a series of life concerns, such as wills, estates, funerals and things like that. Have you thought about making plans on these matters? We would hope that you do and let us know so that your wishes can be followed and we will have peace of mind that what you want can be done correctly."

Estate. A person’s estate is everything he or she owns or has direct interest in (e.g. a house in two names). It is a great idea to talk about belongings and personal items in terms of who might want or get them after a person dies. Too often, families fight over sentimental valued items after a death when they could have conceivably had much less tension if discussions had been held before a death. I remember one woman telling me she really liked a portrait of her mother on the mantle, but her sister and she never talked and there was some other family tension. At my urging, she had the discussion with her sister while mother was living, and reported back that her sister said, "I don’t even like that portrait, take it." I wonder how easily the sister might have been willing to give up the portrait after the mother’s death especially if she felt guilty about issues between herself, her mother, and the sister who eventually got the portrait.

Family history. There are usually a lot of untied ends in a family’s history, some people call it "unfinished business", sometimes it takes the form of secrets or issues that have never been explained. Deciding whether or not to pursue these issues at the end of life is a delicate decision. For younger family members, it may be the last time to find out the truth about important aspects of your family. Usually when people have not discussed something from the past, they are uncomfortable, embarrassed or guilty about it. They may also be protecting a family member (even one who is deceased). In general, I think that one can at least raise the possibility of talking about the family history because you are interested in learning the truth out of respect for family members rather than condemning anyone for behavior or poor judgment. It can also take a burden off of an older relative’s shoulders by sharing the family secret. They may choose not to tell you about it, but asking them if they want to talk about it is a good way to open the discussion.

When They Have Dementia. As any of you who are caregivers know, it becomes hard to know how much a person with dementia comprehends what is said to them. So often, the difficulty of coping with the loss of the persona of the other leads us to not try to communicate at all. I still think that if you have something you really want to say to a parent with dementia, you should say it with the hope (but not necessarily the expectation) that they will understand what you are saying. If you have not said "I love you" much, it is probably far better to say it (if you mean it) while they are alive even if they may not understand you. Anything else would follow the same guide.

As a closing note, think about putting several of these issues together. You can always raise the topic by stating "I read something interesting on the Internet, there’s an author who says we should talk about wills, estates, advance directives and even funeral plans so everyone knows what their parents want. What do you think about that?"

And, what do you think about that?

Disclaimer: This article is not intended to be considered as counseling, psychotherapy, or specific advice to be followed. It is not meant to take the place of consulting with appropriate professionals for medical, legal, or psychological information or strategies. Rather, readers should take the points of the article and make their own personal judgments as to how and when to apply them if at all.

Suggested Reading:

  On Death and Dying by Elisabeth Kubler-Ross

  Questions and Answers on Death and Dying by Elisabeth Kubler-Ross

   The Art of Dying : How to Leave This World With Dignity and Grace, at Peace With Yourself and Your Loved Ones by Patricia Weenolsen and Bernie S. Siegel

   The Day I Saw My Father Cry (Little Bill Books (Paper)) by Bill Cosby, et al.


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