Thursday, 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 resources more available.  The holiday season is a prime time for people to talk with their relatives about what type of treatment they want in a crisis.

Wednesday, November 26, 2014

Tuesday, 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?

Monday, 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. 

Saturday, 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 NewsABC News)

Friday, 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 connect with other people, then keep me alive."

Thursday, 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-Campiou was born in May 2014 with thanatophotic dysplasia.  This condition prevents her chest from being able to grow to accommodate her lungs.  Sun Hudson, the subject of one of the most high-profile U.S. futility cases, had the same genetic condition.

The Clinicians
The treating clinicians unanimously agreed that it was in Ava's best interests to have comfort measures only.  They, the facility ethicist, and even the mother's independent expert all agreed it was "ethically inappropriate" to continue intensive care interventions, because:  
  • Ava's condition was "terminal" with "no known cure"  
  • ICU interventions were "painful and distressing" 
  • ICU interventions placed Ava at risk of "distressing complications"  

Unable to reach consensus in family conferences, Ava's treating clinicians sent her mother a letter advising that they would remove Ava from mechanical ventilation 48 hours later.

The Mother
Ava's mother sought an injunction to prevent the clinicians from removing mechanical ventilation.  But she did not explain why she thought it was in Ava's best interests to be maintained on mechanical ventilation.

The Court
The Court determined that Ava's mother was unable to appreciate Ava's best interests, because:
  • she was not very involved with Ava's care
  • she was not well engaged with the medical team  
  • she had other personal circumstances that impeded her ability to make a decision   

In short, the Court held that the "ability" of Ava's mother "to make decisions that are in Ava's best interests" was "compromised."  

Notably, the Court specifically refused to hold that "physicians do not require the consent of the family or the approval of a Court."  Instead, much like the Ontario CCB, the Court found that Ava's parents were not acting consistent with the applicable standards for substitute decision makers.  The court provided the authorization that it held Ava's mother should have provided.    

Wednesday, 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.