Beautifully Absurd - A Novel on the Importance of Advance Care Planning

Baby Boomers are getting older and while their health care is a right, death is a fact.  Robert Ashley M.D. is an Internal Medicine physician practicing medicine with the UCLA Medical Group in Santa Monica, California. He has published a novel, "Beautifully Absurd," that aims to give this generation of Americans the impetus to discuss end of life care with their family and their doctor.

The main character, Paul Mathews, never wanted to be an average Joe, so when he became a 9-5 working man, a husband and a father, he rebelled. Living alone 20 years later, a massive stroke leaves him tethered to a ventilator and unable to communicate. Now Paul must confront the life he turned away and find the will to live long enough to see his son again. 

Two weeks after his stroke, Paul awakens to a world of beeping machines, dutiful hospital staff and a television he cannot turn off. Severely debilitated and fearing the end, Paul most wants to see his son, Jacob, again, and somehow repair their fractured relationship. But the hospital does not even have Jacob’s nor Paul’s ex-wife, Sarah’s, phone number, leaving Paul dependent upon his doctors to choose his course of care. 

The Advance Directive Form gives an indication of what a patient would want if he or she has little hope of survival. Paul never filled out this directive and Jacob, should he come, has no idea of Paul's wishes. With the costly advances in medical care, Paul can be kept alive for years, but he only wants to be kept alive long enough to see Jacob again. 

Isolated and in this tenuous state Paul is bombarded by the recollections of what went wrong with his life: his days of student protest, Vietnam, his hopeful marriage, his bitter divorce and the solitary existence he chose afterward. He urgently struggles to make sense of his life and find a peace that has eluded him up until now. 

Read More

Alzheimer's Sufferer Dies from Snake Bite after Family Declines Anti-venom

Richard Flora was bitten by an Eastern Diamondback Rattlesnake in Florida.  Since Flora was in the late stages of Alzheimer's and hated the disease, his daughters decided not to give him anti-venom. He died at hospital 11 hours later. (Daily Mail) 



 

Read More

Patient Self Determination Act - Revitalized Finally

I am preparing my next "Legal Briefing" for the Journal of Clinical Ethics on the two-decades-in-the-making revitalization of the Patient Self Determination Act (PSDA).  



Other articles in my "Legal Briefing" series, dating back to 2009, include:

• Shared Decision Making and Patient Decision Aids


• POLST (Physician Orders for Life-Sustaining Treatment)


• The Unbefriended: Making Healthcare Decisions for Patients without Proxies


• Medically Futile and Non-Beneficial Treatment


• The Best Interest Standard: Both Guide and Limit to Medical Decision Making on Behalf of Incapacitated Patients


• Healthcare Ethics Committees


• Crisis Standards of Care


• Organ Donation


• Conscience Clauses and Conscientious Refusal 


• Informed Consent


• Advance Care Planning


• Medical Futility and Assisted Suicide

Read More

Dispute Resolution Mechanisms for Intractable Medical Futility Disputes

I just loaded a draft of "Dispute Resolution Mechanisms for Intractable Medical Futility Disputes" which is part of an end-of-life law and medicine symposium in the New York Law School Law Review.  I would be delighted to receive comments, criticism, suggestions.



I am also proofing the final, final version of "Clinicians May Not Administer Life-Sustaining Treatment Without Consent: Civil, Criminal, and Disciplinary Sanctions" forthcoming in the Journal of Health & Biomedical Law, I will update the current prepenultimate draft with the final shortly.

Read More

Reading Hospital Resolves Futility Dispute by Replacing Guardian

In March 2012, Russell Border was admitted to the ICU at Reading Hospital and Medical Center. As a patient in the ICU, doctors placed Mr. Border on a mechanical ventilator and other forms of life-sustaining treatment. During this time, Mr. Border's treating physician and other Hospital personnel contacted his court-appointed guardian, Sharon Gray, explaining that Mr. Border's health condition was both terminal and futile.  (The court's recitation of the medical testimony is appropriately both extensive and graphic.)

Hospital personnel recommended that, as guardian of his person, Gray authorize the removal of Mr. Border's life-support. Mr. Border's family, including his wife, brother, sister, sister-in-law, and both adult daughters, all agreed with the Hospital's recommendation. Gray, however, disagreed and asserted her authority as guardian of Mr. Border's person to prohibit the removal of his life-support.  

Unable to resolve the conflict, the Hospital filed a petition with the Berks County, Pa. Court of Common Pleas, seeking the removal of Gray as Mr. Border's guardian.  The court granted the petition and replaced the guardian.  This order was affirmed last week by the Superior Court of Pennsylvania.  (The new guardian immediately consented to the removal of life support and Mr. Border died the same day.)

Notably, Border's advance directive indicated that he would want life-sustaining treatment in his current condition.  So, Gray felt that she was being a faithful and diligent guardian by demanding that treatment.  But Border also indicated that his elections were to serve only as a "general guide" and could be altered if alteration was in his best interest.  

The court held that alteration was in Border's best interest.  Consequently, by refusing to authorize the termination of Border's life-sustaining treatment, Gray ceased acting in his best interest.  The appointment of a new guardian was appropriate.  I have been defending (and here) surrogate replacement as a mechanism for resolving futility conflicts.  This case is a good example.

Read More

TS & DS v Sydney Children's Hospital Network (" Mohammed 's case")

I was updating my collection of adjudicated medical futility disputes when I noticed that I forgot to post a case decided at the end of 2012:  TS & DS v Sydney Children's Hospital Network (" Mohammed 's case").  



In this case, the New South Wales Supreme Court refused a parental request for a terminally ill baby to be placed on a mechanical ventilator.  The nine-month-old baby, Mohammed, was severely brain-damaged, deaf and blind.  



THE PARENTS

Mohammed's parents filed an emergency application with the NSW Supreme Court just before Christmas 2012, seeking an order compelling medical staff to treat their son by means of mechanical ventilation.  



They said their son should be given any treatment that could help him breathe.  They said he would then have a chance to resist, or better cope with, his other illnesses. They said Mohammed had survived the first nine months of his life because he was a "fighter" and, if given the chance, he would continue to fight for his health and life for as long as possible.



THE CLINICIANS

Doctors at The Children's Hospital at Westmead, where he has been treated since the age of two months, believed he had only weeks or months to live.  They submitted it was not in the baby's best interests to be placed on a ventilator.  They argued that since Mohammed's condition was terminal, the risks associated with ventilation and the pain and distress it would cause significantly outweighed any benefit Mohammed would receive.  Instead, they said he should be given pain relief and palliative care.



THE COURT

Justice Garling denied the parents' application.  He found that placing Mohammed on a mechanical ventilator would not cure his condition, nor play any role in a better outcome.  "Mohammed's life is to be measured in the short term. . . .  He should not be subjected to pain and discomfort for the remainder of his life by being placed on mechanical ventilation from which he will not be weaned."

Read More

Joanne Lynn on Comfortable & Meaningful End of Life

Joanne Lynn, MD, is a geriatrician, hospice physician, health services researcher, quality improvement advisor, and policy advocate.  She leads the Altarum Institute Center on Elder Care and Advanced Illness.  



In this brief video, Dr. Lynn focuses on

• Shaping American health care so that every person can count on living comfortably and meaningfully through the period of serious illness and disability in the last years of life, at a sustainable cost to the community


• Why are we still using 20-year-old SUPPORT data to guide end-of-life medicine and social support

Read More