None of us live forever. This was brought home by a recent article in the New York Times by Carl Zimmer which suggested the age of 115 years is a barrier beyond which humans cannot live. The steady increase in life span previously observed from year to year has slowed and perhaps come to a stop.
Even the best medical care does not change this inescapable fact: all of us must die. We hope to die not too soon and we hope to die well, that is, without suffering too much and with the presence of those we love.
Aggressive medical care can save lives. Certainly we want medical care when it can restore health and well-being. And perhaps our idea of what is health and well-being may change as we confront death and disability. But it is clear to me, as a physician caring for people facing death, that when a person has no good days left, it is time to let go of aggressive treatments. At this point we need to focus on relieving symptoms and helping the dying person and the family through this time of profound change.
Some of the treatments we offer patients are not effective and are therefore not appropriate.
Let me give you a specific example – terminally ill patients with Alzheimer’s – which unfortunately may be all too familiar to those of you taking care of a parent, partner, sibling, child or friend with this terrible disease.
For many years, it’s been standard practice at certain care facilities to keep patients with Alzheimer’s and other forms of dementia alive by feeding them through a surgically implanted feeding tube.
Quite a few medical ethicists have felt for a long time that inserting and using feeding tubes for this patient population was on balance a harmful practice whose limited benefits were outweighed by serious ethical concerns about patient quality of life.
I could not agree more. My advice is this: don’t feel compelled to authorize medical procedures and interventions on behalf of loved ones without considering and understanding the consequences.
Recent studies have concluded that one of the primary arguments in favor feeding tubes for dementia patients is not valid: feeding tubes won’t help keep advanced dementia patients alive longer than hand feeding.
Why? The feeding tube can become blocked on its own — or a patient with dementia can decide to remove it on their own. This can result in another unnecessary surgery that could have been avoided by providing food and water to the patient by hand.
To prevent demented patients from disturbing a feeding tube, they may be given powerful drugs to reduce their physical activity, or they are constrained by physical restraints in the bed.
What kind of quality of life does this provide?
What are the alternatives?
What is not widely understood is that the human body has some remarkable mechanisms that kick in when we reach the end of life. These mechanisms reduce our pain and suffering without the need for medical intervention.
Let’s look at the example of the terminally ill Alzheimer’s patient. Here, withholding treatment for a patient who can no longer feed themselves or take fluids is not cruel — it’s actually merciful — as it works with these natural processes:
What happens when the terminally ill patient stops eating?
If a patient is terminally ill and can no longer take food on their own, their body will begin to metabolize stored energy, causing them to enter a state of ketosis, which in turn brings on a sensation of euphoria. This is a merciful end for the terminally ill patient.
What happens when the terminally ill patient stops taking water?
If a patient is terminally ill and can no longer take water on their own, their kidneys will start to shut down, leading to a condition called uremia. This in turn has an anesthetic effect on the patient’s nerve endings, acting as a natural pain killer. This is a merciful end for the terminally ill patient.
What about hospice?
Hospice care is available for people who are dying and this care is covered by Medicare. Many people use home hospice for end of life care. My brothers and I were able to care for our parents at home with the support of Houston Hospice. I found the doctors, nurses, and staff at Houston Hospice to be marvelous. Our parents died peacefully in their own bedroom, surrounded by family, without IV’s or machines or tubes or glaring lights.
Talk About Medical Directives for Your Family Members… and Yourself
It’s important to discuss what would happen to you or your family members, like your parents, when facing end of life decisions.
It’s best to put your wishes in writing in a “Directive to Physicians,” also called an “Advance Directive” or a “Living Will.” This allows you to specify in advance what kind of care you want if you face a terminal or incurable disease and you are not able to speak for yourself at the time. You don’t need a lawyer and you don’t need a notary. You can download the Directive to Physicians from the Texas Medical Association web site here: https://www.texmed.org/Template.aspx?id=64
Talk to us here at the office about how to go about this. We have a number of resources that you will find helpful for having this conversation with your parents or with other members of your family. Make sure you are also prepared by creating your Directive to Physicians.
To learn more about the ethics of feeding demented patients in long-term care, I recommend this recent New York Times article: http://www.nytimes.com/2016/08/30/health/tube-feeding-dementia-patients.html.