Q. I just read a very disturbing article about Darryl Young, a 61 year old Navy veteran who was kept on life support for a year while in a vegetative state. Members of the medical staff didn’t offer options such as hospice care to his family because they wanted to make sure Young lived at least a year after his surgery to boost their survival rates for organ transplant patients. Can this type of thing be avoided if you have a Health Care Power of Attorney in place and leave clear instructions about what to do if you are on life support?
A. Darryl Young, the man you are referring to, received a heart transplant at Newark Beth Israel hospital in New Jersey on September 21, 2018. He didn’t wake up after the operation and was kept alive in a vegetative state for over a year.
Darryl was kept alive by a breathing tube and a feeding tube, and a nurse who suctioned mucus from his throat several times a day to keep him from choking. His medical record noted: “He follows no commands. He looks very encephalopathic,” which is another way of saying brain damaged.
Since the transplant, Young had suffered from pneumonia, strokes, seizures, and a fungal infection. Doctors knew that he would never wake up or recover function, according to current and former staff members familiar with his case, as well as audio recordings. Yet they wanted to do all they could to keep his new heart beating. If the doctors could keep Young alive for a year, they would be able to pass another report and avoid a costly investigation (which would cost the hospital a minimum of $2 million dollars) by the Centers for Medicare and Medicaid Services (CMS), who regulate transplants.
Although Young was brain dead, the doctors reportedly kept his family members in the dark, (according to his sister Andrea and employees familiar with Young’s care), never informing them of palliative or hospice care options, and lead them to believe that he could recover. Andrea claimed she was his healthcare proxy, but we don’t know for sure if legal documents were in place. To be informed and to make the right decisions for her brother, Andrea had done her research and met with her brother’s medical team three weeks after his surgery. The cardiologist told her that Young’s MRI showed brain damage but just to a very small part of each section of the brain, which gave her hope. Now she realizes that it was false hope. She learned later that no matter how much treatment Young received, his prospects for long-term survival in a vegetative state were dim.
Transplant Team Did Not Disclose Important Information to Family Members
Recordings show that the transplant team was fixated on keeping Young alive, rather than his quality of life or his family’s wishes, because of worries about the transplant program’s survival rate. Dr. Mark Zucker, director of the hospital’s heart and lung transplant programs, cautioned the staff against offering Young’s family the option of switching from aggressive treatment to palliative care, which focuses on comfort, until September, which would mark one year since his transplant. To rationalize his statement, Zucker told staff, “(w)e haven’t refused anything they’ve asked. We just haven’t raised withdrawing it.”
According to Propublica, a non profit newsroom that investigates abuses of power and apparently led the investigation of this case, Dr. Zucker was recorded saying, “I’m not sure that this is ethical, moral or right,” but it’s “for the global good of the future transplant recipients.”
With the release of these recordings, CMS is currently undergoing an investigation of Dr. Zucker, his staff, and Newark Beth Israel hospital’s transplant programs.
After listening to the audio recordings of the transplant team’s meetings, Andrea Young shook her head. “I know that what happened could’ve not been intentional, but at the very least, they could’ve been honest,” she said. “People should be able to make informed decisions for themselves and for their loved ones.”
What Typically Happens if a Patient Suffers Brain Damage and Is on Life Support
In a typical situation, if a patient suffers brain damage in an operation and doesn’t wake up, doctors are supposed to meet with the family to explain the prognosis and options for care. According to Dr. Ali Zarrabi, assistant professor of medicine and palliative care physician at Emory University School of Medicine, “(y)ou’d explain in a direct and empathetic way that it’s not likely that this person will recover in a clinically meaningful way and then the question you’d hone in on is, ‘If your loved one were awake to hear this, what would he or she want?’”
The Importance of Leaving Clear Instructions
In an ideal scenario, Mr. Young would have made his wishes about end-of-life care known well in advance in his incapacity. In practice, however, although the number of people who spell out their wishes is growing, only about 10% of the general public has completed an advance medical directive. That means that the final decision often is left to family members or other “surrogate” decision makers, and to doctors and clinicians, and it may not be what you would want!
Planning for Incapacity
As hard as it might be to face the idea of your own incapacity, it is very important to take time to consider what end-of-life care you would want. This will help those close to you make the right choices when the time comes. The following documents are part of incapacity planning and estate planning:
• Advance Medical Directive. An Advance Medical Directive communicates your desires to your physicians and family members regarding all forms of medical treatment, and may be used to instruct your physician to withhold or implement specific life-prolonging procedures if at any time you are diagnosed as having a terminal condition and your physicians have concluded that there is no chance of recovery. Without this document, families could have serious disagreements, or someone who doesn’t share the individual’s values may be making the decisions. Our firm includes within this document a proprietary Long-Term Care Directive®, which discusses numerous issues with regard to long-term care should you ever find yourself in need of long-term care at home, in assisted living, or in a nursing home.
• Financial Power of Attorney. When you give someone Financial Power of Attorney, you are giving that person the right to handle all of your legal and financial affairs. The document typically goes into effect immediately after it is signed but is intended to be used by your Agent only when you become incapacitated. Having a Financial Power of Attorney in place avoids the “nightmare of living probate,” the time consuming, expensive, and publicly embarrassing process whereby someone has to go to court to have you declared mentally or physically incompetent and then one or more persons need to be appointed to serve as your conservator, which process is subject to ongoing probate court supervision.
• Revocable Living Trust: A Revocable Living Trust (RLT) generally provides for the creator of the trust (and, if applicable, the creator’s spouse) to have full use of the trust income and principal for life. A major benefit of an RLT is avoiding the costly and public after-death probate process. An RLT also offers protection from incapacity by providing uninterrupted management of your assets by your trustee and, along with the General Power of Attorney, sparing you and your family the potential nightmare and expense of a court-appointed guardianship and conservatorship.
To ensure your wishes are met, it is important to start your planning now, so you are prepared in case a crisis occurs. If you have not done Incapacity Planning or Estate Planning, please contact us for an initial consultation:
Estate Planning Fairfax: 703-691-1888
Estate Planning Fredericksburg: 540-479-1435
Estate Planning Rockville: 301-519-8041
Estate Planning DC: 202-587-2797
About Evan H Farr, CELA, CAP
