hypanis.ru May 2015 - Having Your VoiceHaving Your Voice

How much treatment for the older citizen confronted with a difficult illness?

Recently, a very dear 88 year old friend, whom I have known for 50 years, was diagnosed with cancer near his pancreas.  One option was to do nothing that would likely result in his death.  The second option, was a radical invasive surgery called “the Whipple Procedure” that required an eight hour operation.  On the web I read that the survival rate for this procedure was 25% for 5 years.

My friend was a healthy, lively, and creative man whom I cared for dearly.  When given the choice, he elected for surgery, in part, because he was curious to see what would happen and how he would do.  Obviously, he had an adventuresome spirit and often spoke with an awe about life.

I was pleased for him and his choice and hoped he would have a good recovery.  Unfortunately, it was not good and he died 14 months later after struggling with the many side effects of the surgery and a return of the cancer.

Although I supported my friend’s choice, I’m not sure that I would have taken that 25% risk.  The many side effects from surgery can be hard on our aging bodies and we don’t heal as quickly.  Complications such as strokes, infections, difficulty with digesting food, multiple medications can make life pretty miserable.  Instead of surgery I might choose Hospice with palliative care and make the most of the opportunity to spend time with my family and friends.  My choice rests on my desire to have death with dignity on my terms.

Hospice patients tend to live 25% longer, have a more pleasant end, and cost less in every way.  Families report that while there is grief (as there should be), it is not as deep or infused with complicated feelings about treatment choices.

Examples such as my friend’s help us decide what we would do in a similar situation.  Making a choice is good for us to do now while we have the capacity to make decisions for ourselves.   It also enables us to make our family aware of what we would want in case the decision is suddenly and unexpectedly thrust upon them to make in our behalf.  It can be as simple as saying, “Remember when Uncle John had that medical problem?  Here’s what I would want to happen if it were me.”.  If you engage in this conversation repeatedly, you inform your family and loved ones as to what you would choose.

And don’t forget:  you can always change your mind…no one needs to hold you to what you said.  Who knows – when I get to 88 maybe I’ll decide that the Whipple Procedure doesn’t look so bad.


Death with Dignity for those with Alzheimer’s Disease: Difficult Choices

In the May 17, 2015 NY Times Magazine, Robin Henig chronicles the experience of a 60 year old Cornell psychology professor diagnosed with Alzheimer’s disease who decides to take her life rather than live on in a demented and helpless state. The most challenging aspects of the decision is WHEN she will do it. How long can she wait while retaining her capacity to actually take the actions she wants?  It is a provocative and compelling article which we all should consider for ourselvesThis issue is well demonstrated in the movie “Still Alice” released in 2014.   Alice is a professor of linguistics, who wants to take her life but loses the capacity to take her life by waiting too long.

Here are just a few questions: Would you have the courage to take your life? Are their religious or spiritual issues for you? Will your family or loved ones accept your decision? Can you really say “good bye” to life? Is this a better end than one that drags on consuming the resources, (emotional, loving and financial) of your family? Or is it a gift to them to allow them to care for you?

You may also want to read a beautifully written essay posted in 2014 by Gillian Bennett a philosopher and psychotherapist who also was faced with increasing dementia and eplained the reasons for her decision to take her life. It is based on many factors which contributed to her decision including not wanting to be a drain on both personal and governmental resources.  In Bennet’s case, she is clearly seeing a progression towards greater impairment. She is compelled by this awareness to act before she does not have the capacity to do so.  And she does.

In YOUR LIFE, YOUR DEATH, YOUR CHOICE: Having Your Voice to the End of Your Life, dementia is understood as a series of gray areas…the time when we begin to lose our capacity to think, remember, reason, etc. The darker the gray, the more dementia is clouding our ability to think and interact.  Forms have been developed which allow individuals to declare their wishes while completely capable of making decisions for themselves.

Another beautifully written essay by Michael Wolff is entitled: “A Life Worth Ending. The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son’s plea to let his mother go“.   He describes the descent of his mother and the power of medicine to sustain the body but not the person. While this essay makes it clear that she would not want to live this way, even more poignant is the profound emotional and economic costs of her long illness on the author and his family.

Would you like the opportunity to have assistance in dying if you no longer were capable of living the kind of life that you wanted? Should the government provide avenues for doing this? Have you talked about this issue with your family?  Given the state of Wolff’s mother, would you want to be kept alive if you were permanently and irrevocably in that state?


Assisted Dying and Death with Dignity?

According to a recent editorial in the New York Times, 17 states and the District of Columbia are considering legislation acknowledging that gravely ill patients who have little or no chance of recovery deserve the right to die with dignity.  Desmond Tutu  wrote forcefully about this in an essay in which he criticized the effort to sustain the life of Nelson Mandela whose body was kept alive long after he had ceased to be conscious. Tutu flatly stated that death with dignity is a civil right.

More recently, Brittany Maynard became prominent when she declared that she intended to take her life rather than succumb to the brain cancer that was progressively causing massive seizures.  Maynad feared that she would not be unable to take her life if she didn’t act quickly.  To accomplish her goal of a dignified death, she was forced to move to Oregon and establish residency in order to qualify for the Aid in Dying program – a program that has numerous safe guards in place to insure that a person is not simply trying to find a way to commit suicide.  With the support of her family, she took her life on November 1st, 2014.

The state legislatures currently considering a Death With Dignity law will encounter stiff opposition from individuals within the medical community as well as from some organized religious groups. Detractors include physicians (Ira Byock, M.D for one) and those whose religious beliefs include the tenant that if  “God gave life, only God can take it away”. But as the population ages and more individuals become afflicted with fatal illnesses, the pressure will increase for ending suffering in a way that is both humane and reasonably regulated.

An interesting aspect of the use of the law in Oregon is that only 60% of those who qualify for the program actually secure and use the physician prescribed medication.  But almost all patients describe great relief at knowing that they have the means to end their life if their suffering  becomes unbearable.

If you were confronted with an incurable and progressive illness which was sure to take your life, would you want to have the option to die with dignity on your terms with the assistance of a  physician?  Or are you supportive of  the government saying that you must live out your natural life despite, pain, discomfort, and a lack of dignity?



November 17, 2013
Tiburon Community Congregational Church Tiburon, CA.   A presentations on the topic, “The Toughest Choices You’ll Ever Make.”.
This talk focused on how difficult it can be to make choices when there are two “rights”: the desire to maintain the life of your gravely ill loved one at all costs and the courage to let your loved one go if there is no hope and they don’t want to live.

A secondary focused on advanced planning and conversation about dying – activities that provide survivors with a more comfortable road map as to how to proceed when decisions must be made.

January 26, 2014
Temple Beth David, Northern Philadelphia.  A presentation entitled “How to Have your Voice when a Serious Illness or Accident Occurs.”  A 90 minute “mini seminar”  introduced participants to the complexity of decisions and the kinds of circumstances patients may encounter.   The essential issue of opening up conversations with doctors, family members, and designated proxy was also introduced.

February 11, 2014
The Hill at Whitemarsh, Philadelphia, Pa,  A two hour seminar entitled “Having Your Voice to the End of Life”  presented to a retirement community that addressed the issues associated with end of life planning.

March 30, 2014

Temple University’s OLLI Program (A lifelong learning center)

End of Life Planning: “Having Your Voice to the End of Your Life”.  This class has been offered since 2011.  A ten hour seminar addressing obstacles and resources for having one’s own voice, completion of  forms that outline one’s wishes,  about gray areas associated with aging, addressed issues related to conversation they must have with doctors, family members, and their medical proxy who will make medical decisions for them.  Developments in  new legislation to legalize assisted dying are discussed.

October 2014

A presentation to the Positive Aging group of active seniors which was entitled, “End of Life Planning:  What’s it all About.”

March 2015

A presentation to the Transition Network introducing the concepts associated with   “Having Your Voice to the End of Your Life

May 28, 2015

Presentation to a Men’s Group of Friends in the City.  Presentation entitled “Five Short Videos That Could Change Your Life.”

September 2015

Temple University OLLI Program.  “Four Short Videos that Could Change Your Life”.

February 2016

Presentation to the Einstein Circle at Sarasota, Florida “Four Short Videos that Could Change Your Life”.

Here is a review from the producer of this program:

“I’m delighted with all the positive feedback that came from your Einstein’s Circle and was glad to see the annotated bibliography, as a number of people came up to me at last week’s Einstein’s Circle to ask when it might be expected. 

I also want to let you know that as a direct result of being there for your presentation, three couples made a point of telling me they made appointments to have the “conversation” with their doctors and get their Florida  DNR’s in order and  acknowledged by their physicians. A fourth woman told me that that evening she and her husband talked about how they felt after listening to you and watching the videos and it caused them to come to a decision to leave Florida in the near future and relocate to California to be near their children and grandchildren as they grow older and face the possibility of serious health issues. Your talk was, indeed, conscious raising and begs to be repeated here in Sarasota again on another occasion. 

Thank you again for the time, the effort, the dedication and the energy you put into this very worthwhile mission.”

September 2016

Presentation to the Media OLLI  program:  YOUR LIFE, YOUR DEATH, YOUR CHOICE: How to Have Your Voice to the End of Your life.

October 2016

Author Presentation to Friends in the City and the Philadelphia Public Library on YOUR LIFE, YOUR DEATH, YOUR CHOICE: How to Have Your Voice to the End of Your Life.

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