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.

 

A TRUE STORY ABOUT DETAIL IN DIRECTIVES AND HOW A FAMILY COPED

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:

  1. Reflect on what you would choose if you were the patient.

  2. Review your forms to see if they contain enough detail

  3. 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?

  4. 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!

  5. Write down your thoughts/decisions and put them into your Advanced Medical Directives.

SHARE YOUR OWN STORY HERE.

DEMENTIA IS AHEAD FOR MANY PEOPLE ARE YOU PREPARED?

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?

 

 

DEMENTIA AND DEATH WITH DIGNITY LITTLE PROGRESS.

Paula Span is an incredible journalist who often offers observations which are cutting edge.  In 2015 she wrote about the need for clear and detailed statements about your choices for end of life care if you are suffering from dementia.  In particular  the individual she was featuring had taken pains to detail that feeding and hydration should be terminated.  He simply didn’t want his life to continue in a severely compromised state with little or no dignity left.

It was prescient.  In August of 2017 an article was published (not by Span) which described how the State of Oregon had ordered the feeding of a woman with advanced dementia despite what her advanced directives said.  The reasoning was that she had “not provided adequate detail” in her directives and because she opened her mouth when a spoon was brought to it, she “wanted to eat and to live”.

The husband (her proxy) filed suit against the nursing home and the court ruled against him.   So she remains in a nursing home (at $85,000/ year) being fed by hand.  Keep in mind that Oregon is the State with the longest and most progressive attitude towards death with dignity.

As a good adjunct to detailed instructions in the event that someone is develops dementia, it is also worthwhile to video tape the signing of the directives and to have the person state what their wishes are if they become unable to recognize or interact with others.  You can do this with your smart phone but be sure to save it to a flash drive.

As the situation above illustrates, it may make no difference.

HOSPICE IS GOOD RESOURCE, BUT IT ISN’T ALWAYS GOOD… BEWARE AND DO YOUR RESEARCH

“This Was Not the Good Death We Were Promised.” NY Times Op Ed, January 6, 2018

This is a story about one hospice in one community at a particular point in time.

All Hospice organizations are different and have different cultures.  While they ostensibly do the same thing;  provide care for those at the end of their life, they have different cultures and go through all of the stresses and strains of any organization.  For example, I recently learned of a situation where two parents went into the same Hospice within a year of each other and the first experience was very positive while the second was not.   It is to the credit of the Hospice organization that they scheduled a meeting to learn how they had not met the expectations of the family and were determined to correct the problems.

One distinction that may be important to consider is whether the organization is a nonprofit entity.  It is logical that a “for profit” entity has more of an eye on how to keep costs down.  Click here to read the story.

Talk with your family about whether you want Hospice as a resource when your life is coming to an end.  As friends who might have had a relative what their experience with Hospice was like.  Did you know that Hospice patients generally live longer with less pain and discomfort than a similar group?  Unfortunately, when many hear that someone has gone into Hospice they consider it a death sentence.  It is not.  It is a decision to live for as long as they can with the greatest humanity and comfort that can be provided.  Too many families and patients wait too long to contact Hospice.  HAVE A CONVERSATION ABOUT HOSPICE WHILE YOU ARE WELL AND LET YOUR FAMILY KNOW WHETHER YOU WOULD WANT HOSPICE.

GREAT VIDEO ABOUT AGING, MAKING ADVANCED MEDICAL DIRECTIVES, AND OVER TREATMENT

Video  End of Life – Aging Matters NPT report.

This 59 minute video produced by Tennessee Public Television presents the issue of aging and the associated increasing need for medical services.  It is a comprehensive look at the issues that are present for so many and articulates well the many “systemic problems” that plague our current health care system.  It comments on the many failures of the health care system because of its orientation and its economics.  It is also disturbing to see repeated statements by patients or family members who didn’t feel that they were asked what they wanted, given choices, or told what they could expect with regard to their health issues.

This is an important video for seniors and especially for their children or other relatives to watch and discuss so everyone can all be “on the same page” when decisions have to be made.  As one physician comments, when the patient is in the Intensive Care Unit is not the time to be start having important conversations. The same statement has been made by Emergency Room doctors.  CLICK HERE TO WATCH.

If you have children or relatives who you would like to start conversations with about your choices, send them the link and invite them to be in touch to discuss their reactions.  Or better yet, watch it with them and stop and talk about things that particularly impact you during the viewing.  This is how you will get to know each other’s views.  START THE CONVERSATION!

WHEN THE ICU CAN LEAVE YOU WORSE OFF.

Let’s start with the obvious:  the ICU saves lives that otherwise would end.  But the impact of this aggressive care can compromise life after release from the ICU.

This segment broadcast in June of 2016 describes the adverse impact of the ICU and speaks of a new diagnostic term Post-Traumatic Intensive Care Syndrome (PICS) describing the lasting emotional and cognitive effects of being in the ICU.

You will be able to see efforts by Vanderbilt University Hospital to help patients who are suffering with PICS.  It’s clear that  the ICU impacts emotional stability may also impair cognition.  But there is less research about whether the impact on cognition is a lasting or a transitory effect of the very heavy medication often used in the ICU.  Two very interesting elements to this video are (1) the statistic that 1/3 get better, 1/3 stay the same, and 1/3 get worse in terms of their psychological functioning and (2) that one of the patients (a physician) said he is absolutely terrified about  ever going back into the ICU.   Note that this patient was in the ICU longer than the three day average.

The ICU is mentioned in Chapter 4 of my book as an important issue to think about because of the implications for your overall welfare.

There is no doubt that the ICU saves lives through the use of high tech equipment, powerful drugs, and highly skilled physicians and nurses.  I know that I’ m repeating myself… yes, the ICU can truly save your life!  And this video says it can come with costs.  Show it to your family and proxy and think about what you want for yourself.  If you have an aging relative, show it to them and ask what they would choose: comfort care or aggressive care?

There are important implications for your advanced medical directives.  Serious conversations need to be initiated about how much treatment is right for you.  Keep in mind that age can play a substantial role in making the best choices.

 

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