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Book Review

Thursday, August 6, 2015

Five Questions to Ask Loved Ones About End of Life Treatment

How do we decide how we want to be treated at the end of life?

What would a good day look like if you were suffering from a terminal illness?

This is one of the questions Dr. Atul Gawande asks in Being Mortal, Medicine and What Matters in the End, New York: Metropolitan Books, Henry Holt and Company, 2014, his book exploring medical treatment at the end of life.

Dr. Gawande looks at how this one question, along with a series of questions most physicians are not asking their patients, might shape the course of medical treatment and care of those who are terminally ill, as well as those frail elderly who are in need of long term care.

In the book, one patient says that he is willing to have medical treatment for his terminal illness so long as the treatment will allow him to eat ice cream and watch football on television.  However, if at the end of the treatment he can’t have that ice cream and television, he does not want the treatment.

Another patient says a great day for her would be to take her grandchildren to Disneyworld.  Unfortunately, by the time she tells her doctor this she has undergone months of aggressive treatment that leaves her tired and weak and no longer able to go to Disneyworld.  The question then might be, if your idea of one good day is to go to Disneyworld, should physicians forgo treatment that will not cure you in order for you to have at least that one good day at Disneyworld with those people you love?

In our office, we spend lots of time helping clients fill out their Advance Directives for Healthcare, a document that allows a person to nominate an agent to make healthcare decisions for them if they are not able to make or communicate those decisions.  We talk about whether the client wants extraordinary medical treatment if they have a terminal illness that will likely end in death and they are not aware of their surroundings.  Most people say that they don’t want aggressive treatment under those circumstances.  However, we don’t have a good way for clients to really communicate their wishes to their loved ones when the question may be quality of life versus quantity of life.  What decisions should a healthcare agent make if treatment will prolong life but may leave that life not worth living for the person for whom the agent is deciding?

Dr. Gawande suggests a series of questions that should be asked while a person is still able to give answers. These questions would also be appropriate to ask someone who is aging and becoming frail :

  1. What is your understanding of where you are and your illness?
  2. What are your fears and worries for the future?
  3. What are your goals and priorities?
  4. What outcomes are unacceptable to you?  What are you willing to sacrifice and not willing to sacrifice?
  5. What does a good day look like for you?

Here is a link to an article about the author, along with a video discussing the five questions:

http://www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/

Of course, the answers to these questions will change over time and as diseases progress.  For instance, a young mother facing terminal cancer will have very different goals, fears and worries from the frail 90-year old great-grandmother facing admission to a nursing home.

How would the answers to these questions help if you were the person who has to make or communicate these decisions for someone else?  If you knew a good day for your father was for him to be able to sit and eat ice cream while watching football on T.V., would you make decisions for his care that would allow him to do that?

I know how difficult conversations about end of life can be, but perhaps asking these five questions can at least open up a dialogue that will ultimately lead to better decisions about end of life care.

 

 

 

 

 

 

 

 

 

 

 

 


Sunday, July 3, 2011

When Bridget Came To Visit: On Being Prepared

 When Bridget came to visit, she wanted to take my blue and white teacups home with her.  They were shiny and pretty, and fit in her hand just perfectly.  Dick promised they would go to the mall and buy some teacups just like them.

Bridget was in the mid to late stages of Alzheimer’s disease when she and Dick first visited my office.  Dick, a wonderful, patient husband and caregiver to Bridget, was determined to be prepared for whatever legal and financial zingers might hit the couple.  Years before, after Bridget was first diagnosed with Cognitive Memory Impairment, Dick and Bridget had prepared living trusts, powers of attorneys, and healthcare directives.  They came to me to make a few changes to Dick’s living trust and financial power of attorney.   I always recommend that clients update advance directives and powers of attorney to avoid having someone decide that the documents are “stale” and, therefore, not valid.  We prepared new advance directives for Bridget and Dick.  On the day Bridget came to sign, she could not remember that the children whom she had nominated as agents were adults.  In fact, I’m really not sure she could remember who her children were.

With sadness, I told Dick that Bridget could not sign any documents that day.  We agreed to try another day, since those with dementia often have times when they are very alert, and other times when they are not.  Bridget never was able to sign her new advance directive, and soon went to stay in a wonderful memory care facility.   The health care and financial proxies she had already signed worked fine for her, and Dick was able to make her healthcare and financial decisions without any challenges.

Susan, on the other hand, had never executed advance directives for healthcare, financial powers of attorney, or any wills or trusts.  She didn’t think she needed to, since her husband made most of the financial decisions for the couple.  Her family did not push her to do any planning, since they thought it would upset her.  When I visited Susan at the nursing home after her husband died, she told me the nurses were stealing her underwear, she no longer recognized her family members, and she wondered why I was visiting her at work.   Susan swore like a sailor, and insisted that she would not sign “any g. . d. . . papers”, believing that I was trying to steal from her, too.

As a result, her family had to spend months and thousands of dollars to seek guardianship and conservatorship of Susan, a court proceeding which is expensive financially and emotionally for all involved. 

Many folks with Alzheimer’s and other dementias become paranoid and distrustful.  When they hit that stage, it is extremely difficult to get them to agree to do advance directives, financial powers of attorney, or wills.  Why would they agree to sign something that they believe allows folks to steal from them?

As an attorney, I preach that every adult needs to have an advance directive for healthcare, a financial power of attorney, and at least a basic will.   In Susan’s case, her fear of planning led to heartache and hardship for her family.   Could all of this expense and difficulty have been avoided by visiting an attorney’s office while Susan was able to plan for her and her family’s future?

As a footnote, I want to tell you all about Dick, Richard J. Farrell, whom I mentioned above.  Dick has written a book Alzheimer’s Caregiving about his life with Bridget, joys and trials of caregiving, and about his grief when Bridget died after living with Alzheimer’s for nearly 20 years.  Check out his website at www.alzheimerscaregivingbook.com to see how you can order a copy.

 


Tuesday, February 10, 2009

Book Review: Memory Lessons: A Doctor's Story by Jerald Winakur

 

Book Review:
 
Memory Lessons: A Doctor’s Story by Jerald Winakur
 
I’m an admitted insomniac and a voracious reader. Thankfully, I can combine the two habits so that I can at least be productive during my periods of insomnia. I picked up Dr. Winakur’s book last night, and finished it by morning. Oh, I did get a few hours of sleep in between chapters.
 
 
Dr. Jerald Winakur, a seasoned geriatrician, writes a series of essays reflecting on his medical career and on the physical and mental decline of his father from Alzheimer’s disease. Dr. Winakur is a medical professional who treats the old-old, defined as those over the age of 85, but he is also a son facing the uncertainty of dealing with his old-old father’s declining mental and physical capacities. A son who, although not legally his father’s physician, is his father’s surrogate decision-maker.   Dr. Winakur exposes the human side of a physician - the side where the scientist and trained professional meets the man with doubts about the efficacy of the treatments prescribed for patients and the man with concerns about the ethics of those treatments. Dr. Winakur struggles with the lessons he learned early in his career – to keep the patient alive – with his life lessons. Those life lessons teach that sometimes it is better to let the patient go.
 
Those caring for loved ones with dementia will likely recognize the feelings of guilt and uncertainty that come with the day to day care of someone who no longer recognizes the caregiver. They will empathize with the family’s agony over deciding where the loved one should live, what treatments should be authorized, how to react to the repeated questions and how to deal with the endless wanderings in the night. 
 
Dr. Winakur also exposes some of the flaws in the medical profession, and ties many of those flaws to the system by which physicians are compensated. He raises concerns about the rising number of specialists who are well compensated for procedures, and the stingy compensation afforded family practice physicians, internal medicine specialists and geriatricians who are responsible for using their reasoning skills to diagnose and treat most of the nation’s patients. Specifically, he lays the blame on the Medicare system of reimbursement, the rates determined by a board of physicians heavily weighted with specialists earning their living by doing procedures on patients.
 
I recommend this book to those caregivers beginning their journey with the loved one with Alzheimer’s disease, for they can learn what may come. I also recommend this book for those who are at the end of the journey, for they can find a kindred soul.
 

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