Medicine has performed many miracles and the video link below chronicles a rather typical and understandable end of life event: a seemingly minor health issue cascades into a series of other issues which result in prolonged pain and suffering. With each succeeding medical issue, most people engage in hoping that maybe “this treatment” or procedure will get things back on track. But then it doesn’t.
Generally, older adults are more prone to these health care challenges. Our aging bodies do not respond as well or recover as quickly. All this can elevate the challenge of being a proxy who should be prepared to ask important questions to the person they represent and to the medical personnel caring for them. Those questions are articulated in my book as a template of questions to ask.
Sometimes it is only in retrospect that we see that our well-meaning responses prolonged suffering and/or reduced quality of life. See the anguish, pain and frustration of Keith Olberman as he describes being his Dad’s proxy and the excruciating dilemmas he faces. Note how he urges the viewer to “have the conversation”.
That being said, there are no simple answers to these profound life dilemmas but it is worth at least being aware that we all need to be aware of the challenge of hope versus the reality of or our mortality. Being a proxy can be very difficult.
VIEW THIS WITH YOUR PROXY AND DISCUSS HOW YOU WOULD WANT YOUR PROXY TO RESPOND. IT IS UNDERSTANDABLE THAT YOU CAN NOT ANTICIPATE EVERY MEDICAL SITUATION, BUT IT IS WORTH A GENERAL CONVERSATION.
I was privileged to read a galley proof of this book in January of 2019. The book will be released February 19, 2019 and is published by Scribner.
Butler has written a comprehensive guide to end of life incorporating many practical suggestions for the reader’s consideration. The book may be of equal or even greater value to adult children of aging parents who often find themselves in the position of helping to make very difficult decisions.
Chapters include, among others, gently encourage slowing down, developing an acceptance of mortality, the house of cards (when we become more fragile and less resilient), accepting hospice, and active dying. She has structured the chapters to begin with invitations to reflect on oneself at the beginning of chapter as well as some practical next steps at the end to take based on the content of the chapter.
Butler does address some aspects of advanced medical directives (especially the importance of them) but does not spend as much time on the details and implications of choices as I do. But she does cover a much broader consideration of the practical issues than anything I’ve read. It will be a useful reference for planning.
I highly recommend this book as a useful resource for aging adults. Watch for its release!
The video that accompanies this post is of an 82 year old woman a former nun and philosophy professor who has decided to have a medical assist in dying.
Your first response is likely to be one of shock. She has been ravaged by cancer and the treatments to stop it. She is choosing to end her life and her rationale and logic are clear. Making a choice to treat cancer has consequences which can cure you, devastate your quality of life, or even kill you.
Watch this with an eye towards what you would choose if you were impacted by cancer and had exhausted your options. In nine states in the US you can make this choice, in others it would not be permitted. There are forces actively working to make it impossible for anyone to ask for relief from their suffering. Among them is one member of the Supreme Court (Justice Gorsuch) who has written a book opposing Medical Assistance in Dying. If you believe that this is a right (as a substantial majority of those polled do, express your opinions as a constituents to both local and congressional leaders. Support Compassion and Choices, a national organization which is actively advocating for the right to die.
Birnstengel, Grace Web Editor “One Doctor’s Plea: Consider Palliative Care An oncologist grapples with letting patients suffer when there’s an alternative.” November 9, 2018
Most Advanced Medical Directives ask you to choose some of the most basic treatments such as CPR, breathing machines, etc. They rarely include information about the implications or consequences of your choices So you are really choosing blind… without much information as to what might be either the side effects or the outcome.
This article describes the anguish of an oncologist who would like to see more people with cancer accept palliative care: a medical response which focuses on symptom relief and is tailored to what matters most to you. (You can watch a brief Ted Talk which describes palliative care. You will see Dr. Timothy Ihrig describe how patients lived 3-6 months longer with a better quality of life including less pain and fewer hospital admissions.)
Advanced Medical Directives also fail to ask you about what kinds of responses you might want in a broader sense. For example, you might want to consider whether you would want Hospice, experimental clinical trials, no more hospitalizations, etc. These critical issues and others are addressed in chapter 4 of my book, YOUR LIFE, YOUR DEATH, YOUR CHOICE.
Being clear about his choices.
B died on November 1st, 2018 in the afternoon after struggling with ALS since the summer of 2017. I think that he was 81 years old. He was a quiet, caring, and shy man who had difficulty sharing his emotions. He was a dear friend and a colleague as we had both been professors at the same university in 1969 when we met.
On numerous occasions as we socialized, the idea of how we would want to die was discussed and he was consistent and resolute that he didn’t want to suffer, to be a burden, or to linger. He’d seen that with both his parents and two brothers and that was not for him. His usual refrain was “just take me out in the woods and shoot me”.
When B was diagnosed with ALS, we talked by phone about his options and he declared that he didn’t want a feeding tube which would be necessary because his ALS made it impossible for him to manage swallowing. In September of 2017, he told me that he’d “done the research” and the feeding procedure was very susceptible to infection at the entry port. He was very clear that he didn’t want a feeding tube. However, he was having a great deal of difficulty receiving nutrition and hydration because swallowing difficulties caused gagging and choking.
B had weighed about 190 pounds and by early December he weighed 145. It was then that he chose to have a feeding tube installed and began a process of 4 daily feedings of liquefied food. Almost every feeding resulted in violent stomach aches. Occasionally he would take something by mouth but the consequences of that were usually very unpleasant. When he died, he weighed 120.
The months since the feeding tube have seen him gradually deteriorate, loosing some of his mental capacities and towards the end being unable to do much of anything other than sleep and receive his feedings. He was able to communicate up to a few weeks ago when the ALS took his ability to speak. He used a white board then.
Changing his mind and struggling to live
Of great interest to me is the decision that B made to reverse course when he saw that he was facing death, accept a feeding tube and all the compromises that his illness imposed, and soldier on with trying to live. It is one more lesson to me about the power of our will to live which is especially energized when we are facing a real death, not one speculated about and discussed over drinks in an intimate setting when we are healthy.
While I’m sure that there have been some good moments spent together with B during the past 13 months as his disease progressed, I have also known that his decision has had consequences for the family. These include the pain and anguish of seeing him suffer with the ghastly symptoms that ALS brings upon a person, the periodic life threatening crisis which occurred and necessitated worrisome phone calls and quick visits to his bedside. And especially to his wife of 55 years who has been by his bed side and seen how much suffering he has experienced.
Reflecting on my choices…
I have been teaching about end of life planning and medical directives now for almost 9 years. I have read widely, heard countless stories of good and bad endings, and I have tried to imagine what I would do if I were confronted with a life threatening illness.
I know what I think I want which is a less prolonged suffering and a more peaceful end. I do not want to linger in a diminished state and I‘ve often joked that when I no longer care about listening to NPR or watching PBS, then there is not much to live for.
I am even clearer and feel strongly that I don’t want to be a burden to my wife or family with an extended illness. I would like time with each of them, but I don’t want them to be filled with worry and concern that drags on and on.
I underlined “think” because I don’t really know what I will feel when I am faced with a possibly fatal illness and leaving this earth. B has taught me that I can’t count on my thinking when I am facing death. The power of that existential moment of facing death is enormous and mysterious to me. It is only certain that it is a matter of time until we face it.
Some who read this may be clearer but none of us know what will happen until we are faced with our mortality.
What do you think that you would do if you were B?
Colleen Chierici, published an article entitled, “The Cost of Not Talking About Death to Dying Patients”. The Hill October 8, 2017
The author is a nurse. Most medical personnel have substantially more insight and knowledge than most of us about medicine, hospitals, treatment, and mortality. But she had trouble talking with her dying mother.
Her article is one of the best descriptions of a particular challenge for those of us who will be confronted with an incurable illness. It’s not the only challenge because there are many different kinds of medical situations which confront us. Here are a few of the elements addressed in this article
In retrospect, Colleen’s mother died a terrible death because no one (including the author!) talked with her about the fact that she was dying from cancer. Instead, they tried to treat her.
Many (but not all) doctors and nurses are either ill prepared or unwilling to “have the conversation”… or both.
She admits that it was difficult for her to raise the issue with her own mother. It’s not unusual, but it has consequences for both the patient and their family.
There is a need to go far beyond the dying patient featured in this opinion. Everyone needs to make their choices known. You can do this only if you (1)inform yourself, (2) reflect on what is most important to you, and (3) have deep conversations with those who are important to you… not just once, but frequently.
The author is a cardiologist who describes in the New York Times on 7/30/18 the complicated dilemma he faces when discussing a heart problem called fibrillation… a condition that causes the heart to beat erratically and ineffectively. In a patient with this condition, s/he can die suddenly and quickly without a “defibrillator”. Electronic ones can be implanted to shock the heart back into a regular beat. But the downside of an implanted defibrillator is that as a patient’s heart continues to decrease in effectiveness, they are likely to die a much more prolonged and unpleasant final ending. In this article, you can see that both patients and the doctor have difficulty coping with this dilemma.
It is worth it to attempt to think about what you would choose if you were confronted with this unfortunate choice. It starkly raises the question of quality of life over quantity. Have a conversation with your family and proxy about this dilemma. Maybe you can all profit from this discussion.
Dr. Zitter is interviewed by Amy Tobin, CEO of an organization which focuses on new ideas in Berkeley. This podcast is about the importance of considering your choices long before being admitted to the hospital with a serious illness or injury. She is a specialist in intensive care, pulmonary diseases, and palliative care. The title of the episode is: DEATH 101.
Zitter is the author of Extreme Measures a book about her work as a physician with patients who are very sick and often dying. Her argument is that we spend too much time denying death and too little accepting the inevitability of it. The result is often catastrophic suffering caused by avoidance of important conversations which should be started when a child is 18 (or earlier) and revisited throughout life.
Zitter is also featured in a 20 minute Netflix film, Extremis, which was nominated for an Academy Award in 2016 for “best short documentary”. It is worth watching.
Episode 27 (2/21/18) is 41 minutes long.
After listening to this podcast, share your impressions with your friends and loved ones. Tell them what you want in the way of aggressive treatment if you are not able make choices for yourself. Everyone is different and when a medical crisis occurs, they will have a better idea of what you want and can help you.
A healthy active woman in her early 70’s had a massive stroke while living alone. At the point of discovery several hours later, she was placed on a ventilator and taken to a major hospital. Brain surgery was performed which enabled her to be somewhat responsive by using hand squeezes. (Having a ventilator does not allow you to speak.)
When her family located the woman’s advanced medical directive, they were deemed too vague to respond to the complexities of her situation. Would she have elected to remain indefinitely on the ventilator or would she have chosen otherwise? They didn’t know.
After consultation with doctors, the family attempted communication including telling her the neurologists opinions and the likelihood of her recovery. Through the use of hand signals it was determined that the woman asked to be removed from the ventilator and refused further aggressive care. Her wishes were respected and she died within 24 hours with her family present.
Unfortunately, this situation is not uncommon. Although forms were completed, they lacked specificity with the end result being to put the proxy and family in a state of uncertainty. Often forms are simply a series of check marks and thus do not take into account the complexities that can arise in a life threatening situation. Additionally, forms are often completed with little or no conversation with proxy or family members who in a medical crisis such as this one are often unable to act in accordance with what one may have wanted.
Here are some important positive elements.
The family was together
The patient was consulted throughout
The patient was able to make her choice
The hospital and doctors respected her choices
The patient passed on her terms.
Here are some thoughts for reflection and some suggestions for action:
Reflect on what you would choose if you were the patient.
Review your forms to see if they contain enough detail
Give thought to probabilities: what would you choose if you had 10% chance of living off a respirator? Or a 60%chance of being bedridden? Or a 40% chance of living on your own after you recovered?
Share this story with your medical proxy, family, and doctor and ask them what they would do in a similar situation and then share your choice. Have a conversation!
Write down your thoughts/decisions and put them into your Advanced Medical Directives.
SHARE YOUR OWN STORY HERE.
Medical science has greatly enhanced the life span. This increased longevity means that you must carefully reflect on what how much treatment you want as you age. Research is revealing that living longer increases the chance of developing dementia, for which there is no cure. It is an illness that can strip you of your dignity, consume your family’s caretaking capacity, and exhaust your financial resources. Many elements of dementia care are not covered by Medicare.
The following three articles will help you understand the complexity of the dementia issue.
In 2015 Paula Span, a well-known journalist, described a man who adapted his Advanced Medical Directives to explicitly state that he did not want to be fed if he could no longer feed himself. Span’s article preceded by two years a troubling situation in Oregon that featured a woman in a nursing home with advanced dementia whom her husband claimed was being fed against her stated medical directives. When her husband filed suit against the nursing home, the court ruled that because she opened her mouth when a spoon was put up to it “she wanted to eat”. It was not viewed as a purely reflexive response.
On January 19, 2018, Span published another article describing the efforts to improve the clarity of dementia directives through the use of forms designating what you would want under mild, moderate, or advanced states of dementia. You can view, download and print the five page document which includes three forms addressing each level of dementia.
This directive is limited in two respects: (1) the choices of treatment are more limited and (2) the implications of choices are not addressed. For more detail, I refer you to the Chapters 3 and 4 in my e-book YOUR LIFE, YOUR DEATH, YOUR CHOICE to understand the implications of twelve choices for treatment. Chapter 5 provides information on the 3 levels of dementia with only one form to complete. You can view and compare my dementia directive, “Situation E” which includes 12 choices (including feeding) by clicking here.
We are a very long way from a solution to this issue. In the meantime, it is important to take the necessary steps of deciding how much treatment you want, having important conversations about your choices with your family, doctor, and health care proxy AND completing one of the forms to ensure that your choices are honored.
HERE ARE A FEW QUESTIONS FOR YOU:
HAVE YOU EXPERIENCED DEMENTIA WITH A RELATIVE? WHAT DID YOU SEE OR EXPERIENCE?
ARE YOU AWARE OF DEMENTIA AS SOMETHING THAT MIGHT BE INHERITED IN YOUR FAMILY?
HOW MUCH TREATMENT WOULD YOU WANT? DO YOU HAVE THE RESOURCES FOR THAT TREATMENT? HAVE YOU CONSIDERED WHETHER YOU WOULD TRY TO FIND OUT IF YOU HAD DEMENTIA BY DNA TESTING?
HAVE YOU COMPLETED ANY ADVANCED MEDICAL DIRECTIVES? IF NOT, WOULD YOU CONSIDER DOING IT AND INCLUDING A DEMENTIA FOCUSED DIRECTIVE/
HAVE YOU HAD CONVERSATIONS WITH THOSE IMPORTANT TO YOU ABOUT WHAT YOU WOULD WANT?