Occupying End of Life: A More Empowered Approach

Occupy Your End of Life

Most of us say we want to be in control of our destiny, but do we really mean it? Death is the one outcome we are sure of, yet most of us choose to avoid thinking about it or planning for it until “something” happens. Unfortunately, that is exactly when clear thinking and calm reflection are least likely to be available. In our fear and anxiety, we look to the “experts” to tell us what to do. Yet no matter how well-intentioned or respected, others will never know all the particulars of our unique situation the way we do. Furthermore, if we wait until a crisis to confront the difficult and far-reaching decisions we each must eventually face, we may not even be conscious to make them. They will be forced into the hands of our loved ones, or even complete strangers, who may or may not have any idea what we want. They will be deciding how and where our last days, weeks, and months will be spent.

Who Suffers?

While this may be a burden on others, the person most directly affected by this choice not to make a choice will be us. As terrifying as the unknown nature of death and debilitation can be, even more distressing is giving up the opportunity to approach the end of life on our own terms. Polls have shown that a significant majority of Americans would prefer to die at home, yet only 20-30% do. Why is this? One reason is that not enough people make their wishes known, or put plans in place to insure they are followed when the time comes. Family members as well as health care providers need to be aware of what measures one wants taken when dealing with potentially life threatening diagnosis or situation.

Consider Elder Mediation

Elder mediation is an alternative dispute resolution process that many associate with divorce or foreclosure proceedings, but is growing rapidly in the areas of aging and estate planning. It creates a space and provides a process to make one’s needs and desires known to all interested parties before a crisis, while one is still able to answer questions and make sure personal wishes are understood. It is an opportunity for everyone to get on the same page without the stress and urgency of a crisis getting in the way. Mediators are trained neutrals with no interest in the outcome of the mediation. They facilitate the conversation, but do not direct it. While elder mediation can be very effective for proactive planning, it is also a good option even after a critical incident or mental decline. The opportunity for families to come together, engage in productive conversations that can result in realistic and workable plans, and keep the elderʼs self-determination and best interests at the forefront is extremely valuable. It will have ripple effects into the lives and well-being of all involved.

Costly Decisions

Beyond quality of life concerns, in these frightening economic times, it is worth mentioning the runaway costs of care for the very end of life. 25 percent of Medicare spending goes to the five percent of Medicare patients in the last year of life. The out-of-pocket costs can easily reach into the tens of thousands, with no cure at the end of this massive expenditure. In addition, there is no evidence that continuing active treatment will even prolong life after a certain point. Most people want to leave something for their families, especially in light of the ever-increasing economic inequality in this country. This isn’t about denying Mom or Dad care in order for the kids to cash in. It’s about taking a long look at the amount of money that is spent on futile care. These are delicate and emotionally laden topics that deserve thoughtful consideration, not snap judgments made in a moment of crisis.

Preventative Care

By empowering the individual to make his or her own decisions ahead of time, many of the financial issues that are bankrupting families and the country could take care of themselves. Elder mediation can be the forum where this kind of decision-making takes place. Georgia Daniels gives a clear explanation of what elder mediation can look like in this post at mediate.com. Awareness of our mortality doesn’t have to be terrifying. It can help us appreciate being alive and remind us to make the most of it, up until the very end.   Thank you to Arlene Wanetick for editing this post. And, thank you to squishband for providing the picture.


For over a decade, Amy Roth, a licensed clinical social worker, has been working with families as they move through crises. Amy received her BA in psychology and Masters in Social Work from the University of Kansas and she has a Certificate in Aging from Boston College. In addition to her education and longtime experience as a hospice social worker, Amy's training includes divorce and family mediation training from Northwestern University and elder mediation training through Elder Decisions in Boston and Zena Zumeta in Chicago. Amy has a keen interest in meditation and the new findings in neuroscience research and their potential applications for the field of aging.


  • Dean Hicks

    What a great article, and something we should all think about. If not for ourselves, then at least we should think about these issues for our loved ones. What a great and loving gift to give; taking the stress of “figuring out what we want” away from our families during the traumatic end-of-life is a loving and caring thing to do. Very well written.

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