Tag: medical futility blog

Blog Posts (400)

November 27, 2014

As You Wish - Virginia Advance Care Planning Website

Four Virginia health systems (Bon Secours, Chesapeake Regional Medical Center, Riverside Regional Medical Center and Sentara Healthcare) have just launched a new "As You Wish" advance care planning website.   This is a good time to make these res...
November 26, 2014

The Lack of Consensus about Futility (Video)

Earlier this month, Alan Meisel presented "The Lack of Consensus about Futility" as part of the MacLean Center's 2014-2015 seminar series.
November 25, 2014

New Advance Care Planning Videos Show How to Avoid Premature Dying

Did Robin Williams commit suicide due to fear of Advanced Dementia? Did Brittany Maynard hasten her dying based on her fear of future unbearable pain? Did they pay the high price of premature dying—losing some remaining enjoyable life—to act while they still had capacity to control WHEN they died? Might they have lived longer had they been aware of an effective plan to die AFTER losing capacity?

Psychiatrist/bioethicist Stanley Terman, PhD, MD, Medical Director and CEO of the non-profit organization, Caring Advocates, has created ​three ​new videos from live presentations in Oct. and Nov. 2014​.

​1) The BEST WAY to Say Goodbye—if living with pain or dementia.​

Th​is video portrays poignant stories of patients that illustrate the need for diligent, strategic Advance Care Planning:

Robin Williams: Was a “key factor” in his decision to commit suicide experiencing hallucinations or other symptoms of early Lewy Body Dementia? Might he have suffered from the “Dementia Fear”?

Brittany Maynard: She admitted this “did not seem like the right time” but then died a few days later. She feared cancer would take away her autonomy: “The worst thing that could happen to me is that I wait too long.” Where there issues she could have worked on to reduce her current suffering, so she could decide to live longer?

Meryl Comer: As her husband’s caregiver, she considers herself a “POA” (Prisoner of Alzheimer’s). Dr. Gralnick was diagnosed 20 years ago. Yet no professional has ever advised Ms Comer about the ethically accepted method of “Substituted Judgment” to make end-of-life decisions. The new “Consensus of Substituted Judgment” method strives to be more accurate, less stressful, and its protocol has built-in, a way to deal with family conflicts.

Margaret Bentley: Neither the administrators of her residential care facility nor the court would HONOR the instructions she made in her Living Will, even though they were consistent with the requests made by her husband and daughter—her proxies/agents. Her sad story shows why DILIGENCE is necessary when completing a written Living Will.

Casey Kasem: His final weeks were plagued with pain and family conflict. The misery of his last chapter of life might have been avoided had he used his (famous) voice to make a strategic audio or video recording on which he stated what he wanted and explained why.

Gillian Bennett: Was her suicide premature and motivated by the “Dementia Fear”? Would she have decided to live longer if she had known about, and had confidence in a strategic plan to implement Natural Dying—AFTER she reached the stage of Advanced Dementia?

Sadly, many people are led to believe they have ONLY two options: premature dying (so they lose some joyful life) OR prolonged dying (so they are forced to endure more suffering longer). A third option makes premature dying unnecessary, sad, and tragic: Diligent, strategic Advance Care Planning.

This one-hour video can be viewed in two parts. Part 2 begins at minute 36. It includes:

  • What is Natural Dying and why is it a peaceful and moral way to die?
  • How can you complete a clear, specific Living Will by making “one decision at a time”? 
  • How can you set up a strategy to feel confident you will get relief from end-of-life pain?
  • What can you do to relieve the prolonged suffering of a loved one who now lives with Advanced Dementia—if he never completed a clear and specific Living Will?

​2) ​Lost, NOT found in Alzheimer’s—important, timely & relevant lessons in Meryl Comer’s revealing book:

“Slow Dancing with a Stranger—Lost and Found in the Age of Alzheimer’s” is inspiring, informative, and above all, honest. It shines a bright light on the dark side, to allow readers to learn what is important, timely, and relevant. It can motivate readers to complete their own diligent Advance Care Planning, if they ever reach the stage of Advanced Dementia. It also demonstrates the urgent need for broader education so that people are informed about end-of-life options that are legal and moral—if their loved one did not previously complete a clear and specific Living Will.

Three events had potential to dramatically change the lives of two people in their prime. Emmy-award winning journalist, Meryl Comer as the "POA"--"Prisoner of Alzheimer's" and her afflicted with dementia husband, Harvey Gralnick, the former head of oncology and hematology at the National Institutes of Health. These events were:  
(1) Not receiving an accurate diagnosis promptly;
(2) Not receiving a realistic potential prognosis; and,
(3) Not receiving information and advice so the POA would know how to implement the ethically accepted standard of “Substituted Judgment method” that she needed, to make a difficult end-of-life decision.

WITHDRAWING hand-feeding/drinking but still offering (that is, NEVER WITHHOLDING) the vital substances of food and fluid can be clinically and ethically appropriate to reduce prolonged and intense suffering of Advanced Dementia patients. Such actions can also be considered consistent with the Principle of Proportionality.


​3) ​Must we all die with forced hand-feeding in Advanced Dementia? Will others honor our Living Will?” 
​​
​Initially, this PowerPoint ​presentation was given to the American Society for Bioethics and Humanities annual meeting in October, 2014​. This video has a revised​, updated audio.

Dementia (Alzheimer's) presents huge challenges. In the advanced stage, the goal to sustain life may conflict with the goal to relieve suffering.

Margot Bentley completed a strongly worded Living Will because she was adamant: She did NOT want to suffer a long time in Advanced Dementia. She also appointed her warriors: her husband and daughter —to make sure her wishes would be honored.

Sadly, her plan did not work. She has now been forced-fed for three years.
What can we learn about from her experience?

November 24, 2014

Stop Unwanted Medical Treatment

Healthcare providers regularly ignore end-of-life wishes or give patients insufficient information to make medical decisions.  Check out Compassion & Choices campaign to stop unwanted medical treatment. 
November 22, 2014

Mary Welch Charged with Medical Child Abuse for Obtaining Unnecessary Treatment

A 50-page arrest warrant for Mary Anna Welch accuses her of deceiving doctors into performing needless invasive surgeries on her son, Duke.  She's charged with child endangerment.  (NBC News; ABC News)
November 21, 2014

Brain in a Jar - Sufficient Reason to Keep Me Alive

I share this treatment preference expressed by Atul Gawande at a recent Oregon Public Broadcasting book event. "If I'm a brain in jar and I have some sort of sensory devices hooked up to me that allow me to speak, to think, to hear, to talk and to con...
November 20, 2014

Resolving Medical Futility Disputes - Alberta follows Ontario in Chalifoux v. Alberta Health Services

This month, the Court of Queen's Bench of Alberta released an eleven-page opinion in Chalifoux v. Alberta Health Services.  This is a rather typical medical futility case resolved in a typical fashion. The Patient Ava Alayla Chalifoux-C...
November 19, 2014

Martha Perez - Texas Family Charges Organs Procured BEFORE Death

I recently summarized a few cases in which a patient was either negligently or intentionally declared dead prematurely.  

But this recent case reported by Fox News in Dallas Fort Worth indicates misunderstanding by the family rather than error by the clinicians.  

26-year-old Martha Perez dies from injuries sustained in an car wreck involving a suspected drunk driver.  Perez was a registered organ donor and doctors told the family they were prepared to harvest the organs for donations.

The family objected: “But she still has heart and lung functions,” said family member Juan Martinez.  Unfortunately, this statement indicates that the family does not understand that these cardiopulmonary functions are compatible with legal death in Texas.  They can be artificially sustained even after death is determined (on neurological criteria).   

On the other hand, the family also alleges: “They took her off the life support and she was still breathing.”  If that is true, then the determination of death must have been wrong.  A person breathing on their own (without ventilation support) cannot be dead under either cardiopulmonary or neurological criteria.

November 18, 2014

Texas Legislature to Address Marlise Munoz Dead Pregnant Situation

Yesterday, on Inside Texas Politics, Texas Representative Matt Krause said he is preparing legislation for the 2015 session that will address the situation in which a pregnant woman is on life support.   Removing life support from a pregnant woma...
November 17, 2014

Janina Kolkiewicz Wakes Up in Morgue after Pronounced Dead

On November 6, a Polish physician made a house call on 91-year-old Janina Kolkiewicz.  But after finding "no basic life functions," the physician declared her dead.  Two hours later she was taken to the morgue. The physician checke...

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