Futile Health Care
The Merriam-Webster Dictionary defines ‘futile’ as ‘having no result or effect; pointless or useless’. On a rainy day in November, after a week of early winter snow that has since melted, it is futile for me to mop my kitchen floor when three dogs continuously insist on going outdoors to play in the mud.
Futile health care is defined as care that does not prove to be beneficial in extending life or giving quality of life.[1] It is care that neither lengthens nor improves one’s life. When futile care occurs, it can be costly. A 2012 study of more than 28,000 cancer patients showed that in the sixth month before death the average cost of care was $7,835. The average cost of care in the last month of life was $25,260.[2]
If health care treatment is considered futile, why is it provided? One of the most useful concepts I learned in graduate school in the early ‘90s is the notion that all behavior serves a purpose. Nothing is done without a reason. We may not be aware of what the reason is, but we do not act purposelessly.
Why is Futile Care Provided?
My thought is that futile health care is provided because we’re not ready. We’re not ready for a life to end or for quality of life to no longer be an option. We’re not ready for all our human attempts at changing the inevitable to be ‘pointless or useless.’ I think I’m safe in saying it’s a fairly universal opinion that no one is leaving this life alive. But even though we know this and agree on it, I suspect we subconsciously think it’s for other people. It’s easy to point outside ourselves or outside our circle of loved ones and say ‘don’t do CPR on that frail 93 year old’ or ‘that chemotherapy will only make you sick and won’t buy any quality time.’ But when it’s our turn or that of someone we love, reason and logic can evaporate. The heart rules, and the head is not invited.
How do we get ready? I’m not sure it’s entirely possible. Our brains are hardwired to survive. If dying was an option that came easily to us, the human species would likely have disappeared eons ago. I do think, however, there are actions we can take that might help prepare us.
Steps to Preparing Ourselves for End of Life Care
A first step is internal – a conversation with ourselves. What is important to us? What do we value? What do we want to accomplish? Who do we love and do they know it or need to know it? Do we need to make amends with anyone? What would we be sorry about not saying or doing if we never got the chance? If our circumstances changed, our health, for instance, would any of our answers be different? How?
I believe each of us wants to make a difference, wants to contribute something of value to this world. I think of it as leaving a legacy and a way of achieving immortality. If something of us lives on after our death, we won’t be forgotten. Robert Jay Lifton created the notion of different kinds of ‘symbolic immortality’. Biological immortality exists when one’s genes are passed on through offspring. Theological immortality relates to belief in an afterlife. Immortality can also be accomplished through works (I think of philanthropy or writing). Natural immortality describes the process by which our bodies return to the earth and participate in the creation of new life.[3]
Is leaving a legacy important to us? If so, have we started to create one or is it still on our Someday List?
The Role of the Patient Advocate
A second step can be to share what we know of ourselves with our patient advocate. This is the person we select who will make our health care decisions for us when we cannot make our own decisions. Short of writing out the treatment we might want for every possible scenario, our patient advocate theoretically knows us well enough that she or he will make good decisions for our care – decisions we might have made for ourselves. One way a person is able to know us well is for us to tell them.
Third, we need to share our values and our thoughts about the care we want at the end of our lives with the people who are closest to us. I know of a family who celebrated Mother’s Day by coming together and listening to the matriarch of the family describe what she wanted when there came a point that she could no longer make her own health care decisions. They all thought her request to gather for this purpose was a little unsettling, but the conversation was easier than they had anticipated, enjoyable even, and now they have a sense of what is important to her.
They have also acknowledged – in advance of a crisis – that she is not literally immortal.
I think that by preparing for our care at the end of our lives, and preparing those around us, we have the thoughts and conversations now – when there is time to have them – instead of during a crisis when there is little to no time and emotions are running very high. Making decisions in a group is already difficult. When that group is your family and there is a crisis, it can become unforgettably difficult. Decisions made under pressure can divide a family for generations. I believe this is largely avoidable.
Sharing Our Advance Directive
Fourth, we need to share our advance directives with our physician, and we need to take a copy of our advance directives with us when we go into the hospital (each time we are admitted) and when we travel. I know several individuals who travel with a copy of their advance directives in the glove box of their vehicles.
Do you have advance directives? Do you have a patient advocate? Have you shared your decisions with your family and your physician? These are steps we can all take now that may avoid futile health care in our future. Futile care isn’t just expensive monetarily. It exacts an emotional toll as well.
How often have you watched a story unfold in the news and said to someone, “I would never want to live that way”? Do you have that in writing?
Advance Directive Resources
The National Hospice and Palliative Care Organization has advance directive resources for each state in the U.S. Another resource is Making Choices Michigan. They have a free downloadable advance directive form and provide free facilitated conversations.
Preparing ourselves for our care at the end of life should be a process, not an event. Decisions we make related to our advance directives should be revisited on at least an annual basis.
There are many reasons to delay advance care planning. But I think the reasons for completing advance care plans and doing it now are better.
Theresa Lynn, RN, PhDc
Executive Director
[1] Huynh, T. N., Kleerup, E. C., Wiley, J. F., Savitsky, T. D., Guse, D., Barber, B. J. & Wenger, N. S. (2013). The frequency and cost of treatment perceived to be futile in critical care. AMA Internal Medicine, 173(20), 1887-1894.
[2] Chastek, B., Harley, C., Kallich, J., Newcomer, L., Paoli, C. J. & Teitelbaum, A. H. (2012). Health care costs for patients with cancer at the end of life. Journal of Oncology Practice, 8(6s), 75s-80s.
[3] Lattanzi-Licht, M. (2007). Religion, Spirituality and Dying. In Handbook of Thanatology. Balk, D., Wogrin, C., Thornton, G. & Meagher, D. (Eds.). New York: Routledge.
Photo credit: Craig Gardiner Photography
