Advanced Directives and palliative care read and the links to be better informed

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.

 

I AM AWED AND HUMBLED BY THE WILL TO LIVE… REACTIONS TO A DEAR FRIEND

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?

EVEN MEDICAL PERSONNEL HAVE DIFFICULTY TALKING ABOUT END OF LIFE AND THERE ARE CONSEQUENCES

 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. 

 

When treatment of a heart problem can make things worse in the long run.

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.

 

JESSICA ZITTER, MD SPEAKS ABOUT HER MORAL QUALMS ABOUT KEEPING PEOPLE ALIVE WITH MACHINES

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.

https://www.berkeleyside.com/…/new-podcast-death-101  or http://berkeleyside.libsyn.com/podcast   

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.

 

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