(This article, used with permission, first appeared on the KevinMD website in December 2022. The author is Final Exit Network’s Surrogate Consultant and is a patient advocate and founder of Ending Well! Patient Advocacy. She focuses on end-of-life care and planning, aiming to help people have a “good death.” She can be reached at Final Exit Network and LinkedIn.)
‘This victory ensures that advance planning documents are legally enforceable and will be respected by doctors; if they are not, individuals can hold providers accountable for violating their health care decisions.” – Greenberg decision, 2022
Dr. Gerald Greenberg was a New York dentist when in 2010, he was diagnosed with early-onset dementia. In 2011, he executed a living will stating the medical staff was to provide comfort measures only and no medical care that would prolong his life. In 2016, with advanced dementia and unable to recognize or communicate with his wife or children, he was admitted to the hospital with severe sepsis.
On November 4, 2016, in “direct contradiction of the notes in the medical records, Dr. Greenberg’s living will, the Medical Orders for Life-Sustaining Treatment (MOLST), and Ms. Greenberg’s verbal instructions, a doctor directed that decedent be treated with intravenous antibiotics and ordered a brain CT, chest X-ray, ECG, blood tests, and the administration of other medications that were not necessary to alleviate pain.”
His family filed a medical malpractice claim seeking damages for Dr. Greenberg’s pain and suffering. Had his living will and surrogate’s requests been respected, Dr. Greenberg would have passed peacefully within a few days but instead survived in pain for another month. In 2022, the New York Supreme Court reversed a lower court’s dismissal saying, “a competent adult’s right to refuse medical treatment, even where refusal may result in death, is well established by case law.”
Dr. Greenberg’s case is one example of a wrongful prolongation of life lawsuit, and these cases are increasing. Providers should take note and beware. Advance directives give competent adult patients the right to accept or reject medical treatment and choose a surrogate to speak for them when they become incapacitated. This right was codified in 1990 when Congress passed the Patient Self-Determination Act, encouraging the creation of advance directives (living wills and choice of health care surrogate) before a person becomes incapacitated and unable to make their preferences known.
Medical providers have a duty to follow a legally executed advance directive or medical order such as a do not resuscitate (DNR) or MOLST. Doctors cannot override the patient’s wishes because they think they know what is best, later claiming they were acting in good faith. An adult with decisional capacity or their legal surrogate has the right to refuse even life-saving treatment. In 2021, the Alaska Supreme Court reversed the dismissal by a lower court in one such case, ruling that “good faith alone does not provide immunity for failure to comply with a health care surrogate’s instructions.”
If medical staff choose to ignore your wishes, you or your family may have a cause of action against the provider. Courts typically base damages on medical expenses from the time of the unwanted treatment to the eventual death of the patient. The pain and suffering the patient and family endure due to the doctor’s actions are the non-economic damages that are harder to quantify. Imagine the pain for a family forced to make the wrenching decision to remove life support from a loved one the patient never agreed to in the first place. Due to the psychological and emotional distress of the parties, many of these lawsuits never reach a jury. In 2016, a similar case in Georgia, Doctors Hospital of Augusta v. Alicea, resulted in a million-dollar settlement. The Georgia Supreme Court ruled: “It is the will of the patient or her designated agent, and not the will of the health care provider, that controls.”
These precedent-setting cases are becoming more prevalent and have set a standard for courts in other states. Doctors and facilities no longer have automatic immunity shields because they “kept someone alive.” It is not always better to “err on the side of life,” especially when the advance directive and surrogate state otherwise. Sometimes, resuscitating someone, such as Dr. Greenberg, only increases suffering and prolongs a much-wanted death. “They made the end of his life horrible and painful and humiliating,” Elaine Greenberg said. “What’s the sense of having a living will if it’s not honored?” The law is becoming more evident; it is the hospital and doctor’s responsibility to check your advance directive, follow your stated wishes or your surrogate’s instructions, or be prepared to suffer the consequences.
Watch the podcast about this article for a more complete discussion.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers
who support mentally competent adults as they navigate their end-of-life journey.
Established in 2004, FEN seeks to educate qualified individuals in practical,
peaceful ways to end their lives, offer a compassionate bedside presence and defend
a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law.
Final Exit Network is a 501(c)3 nonprofit organization.
Excellent article. Thanks for reminding us that we have a say (when these cases are successful). This should also apply to DNR orders which are overlooked frequently. I am still not clear if we or our surrogate or advance directive can prohibit spoon feeding. I think food and fluids must be presented but can they be withdrawn if there’s no interest?
Faye, that is exactly my concern…spoon feeding and the offer of sips of water. I believe legally we can refuse tube feeding, IVs etc, but spoon feeding is a grey area.
I just wish we or our legal health care surrogate, could get a pill and end it for us as designated in our living will.
Final Exit Network will provide free legal support for users of our Supplemental Advance Directive for Dementia Care. This resource may be an effective asset in circumstances such as Dr. Greenberg’s. See: https://finalexitnetwork.org/services/supplemental-advance-directive-for-dementia-care-sadd/
My article addressed the medical community’s failure to follow LEGAL advance directives, POLSTS, Surrogate instructions, and DNR orders. VSED falls somewhat into that area but is really in a class by itself. The cases I cited were not in any “gray” area. Unfortunately, there is no settled law on using VSED for dementia patients. Since there is a debate about whether food and drink are “medical,” it remains unclear and open to interpretation. Providers may feel ethically bound to offer unwanted food and drink. Here’s a link that may help to answer questions about the practice and our rights to refuse. https://vtethicsnetwork.org/medical-ethics/honoring-do-not-spoon-feed-requests
Nevada is the only state that allows rejection of “natural nutrition and hydration in the future.”: https://thenevadaindependent.com/article/the-ethics-of-nevadas-new-law-on-dementia-and-advance-medical-directives
To prevent unwanted spoon feedings, you must clearly document your wishes in a dementia directive, video those wishes, choose a surrogate who will fight for you, and carefully select a facility that will honor your requests. FEN offers free legal support for its members wishing to fight for this right.
A patient’s end of life wishes are too often ignored. I’m grateful that my mother died en route to the emergency room. Yet she suffered for many years and may have taken advantage of a medical aid in dying option, had it been available in her state, Nevada. I wrote a recent op ed, published in the Albuquerque Journal, about my mother’s situation. I live in New Mexico, which has strong legal support for a patient’s right to choose, but even here, dementia is a gray area.