(Janis Landis’ professional career was spent at the Internal Revenue Service. Upon retirement, she turned her attention to the only topic less popular than taxes: death. Janis served as President of Final Exit Network from 2015 until June 2019. Janis continues to serve on the Board of Directors. This article is the second of a two-part post.)
In the first blog we discussed the patchwork of state laws defining death for clinical and legal purposes. Finally, in 1980, a committee of experts were assembled and arrived at a definition of “death”. Their work resulted in the Uniform Determination of Death Act (UDDA). The UDDA offers two definitions for when an individual may legally be declared dead:
- Irreversible cessation of circulatory and respiratory functions; or
- Irreversible cessation of all functions of the entire brain, including the brain stem.
Most states adopted this model law without controversy and hospitals have used this definition for decades. This meant that transplants could continue under the conditions of brain and respiratory failure but with ventilators keeping the organs alive.
Doctors can now keep individuals in a vegetative condition alive for years. Some medical professionals have begun to ask how the “dead” person is any different from a person in a vegetative state, except that the person in a vegetative state is breathing on their own. Doctors are now witnessing what happens to people in vegetative states (brain dead but breathing without a ventilator). They are finding other systems continue, such as hormone production. A young person in such a state may even go through puberty. So it follows that you don’t need a brain or a functioning respiratory system to be “sort of” alive. A person could be brain dead but as long as their respiration is artificially maintained by ventilator, other systems in their body are in some sense still alive — depending, of course, on your definition of “alive”.
Experts are now relooking at the UDDA and trying to find common ground in this new uncertainty. But the UDDA is merely a model for each state. So even if this new commission agrees on wording, every state legislature will have to make its own law. As Thaddeus Pope, a legal expert in this area, said at a meeting of these experts:
“It seems absolutely obvious to me that in South Dakota, Oklahoma, Ohio, a number of states, this is going to be a big problem. We’re literally legislating what states of life are worth protecting, which is very, very similar to the abortion debate.”
So families and doctors may well find themselves mired in legal battles that stretch for years before the patient’s status can be determined.
The nightmares faced by the families of Terri Schiavo, Nancy Cruzan, and Karen Quinlan may once again haunt the ICUs and nursing homes of America.
(Credit to Daily Beast, July 2, 2022 “Inside the Heated Scientific Debate to Redefine Who Is Dead” on which much of this article is based.)
These two columns written by Janis Landis bring up new issues and dilemmas that I hadn’t even thought of. Actually, the idea of each state deciding the strict rules around abortion or even gynecological procedures that are medically necessary for other reasons is frightening enough, but if we also realize that individual states may make their own rules about when a person is actually dead, we will truly be living a nightmare. I already have two good friends who have pulled up stakes and moved to more “progressive” states just to avoid these possibilities. I appreciate Janis’s thinking and explanations. Maybe what is needed most is calm deliberation and planning about how best to proceed. Staying calm and doing the right thing seem particularly challenging at the moment! I wish us all courage and discernment.
This indeed is a very scary situation for those who live in red states. It will certainly force the rate of suicide higher, especially for older people who don’t want to be kept alive on machines and feeding tubes, while the nursing homes, hospitals and big pharma make their millions.
My husband was a private-pay resident in a long-term care center solely for people with Alzheimer’s disease and other forms of dementia for six years, four months until his death this January due to frontotemporal degeneration. In the nursing stations, charts were clearly marked “DNR” or “DNR-CC” on their spines, and that continued when they transitioned to electronic medical records. Upon admission, family member(s) were asked for the new resident’s living will or health care power of attorney document. The people I made friends with there (spouses and children of residents) and I all knew of some residents who had written wishes to not prolong life artificially and some who did. One of my husband’s roommates died suddenly because his advanced directive stated “no hospitalization”. He died due to something where his life could have been saved by hospitalization.
The staff honored these wishes, no matter what they were. It was a secular facility, but many staff members were practicing Christians, but they had to honor requests not to prolong life with which they might have disagreed. It’s untrue that all assisted living centers and nursing homes keep residents alive against their wills.
Thank you for your reminder that many assisted living and memory care units are run by ethical and compassionate staff. By the nature of FEN’s work, we tend to hear from people who have had problems enforcing the patient’s directives. Your comments underscore the important of thoroughly investigating any facility before choosing it for you or a family member. The time to ask about adherence to patient wishes is before it becomes a matter of urgency.