Hot Topics: End of Life Care
by Craig Klugman, Ph.D.
The Good Doctor (Season 3; Episode 14): Lying; Social Media; Internet Medicine; The Good Doctor (Season 3; Episode 15): Pressuring a patient; Surgery to correct social problems; New Amsterdam (Seasons 2; Episode 13): End of life; Battery; Chicago Med (Season 5; Episode 14): Can an abuser’s victim make his medical decisions?; Misdiagnosis
Cassie is a patient with a rare disorder—hey hyoid bone is too long and this causes problems.…Full Article
by Craig Klugman, Ph.D.
Reznick’s mother is dying of brain cancer.…Full Article
The right of a person to live out his or her own particular life plans is an important value we all hold dear. To the extent possible we should honor the prior expressed wishes of individuals after they have lost capacity and provide medical care consistent with those wishes. In general, it seems to me that a patient’s right to refuse any and all medical treatments while having capacity should extend to the future during the time of incapacity.
The scope and authority of an advance directive is an important matter for many patients who fear being over-treated and having the dying process drawn out on machines in the ICU. But many aging individuals also fear becoming demented from Alzheimer’s disease or other forms of dementia and living for years while having lost all connection with their past identities and relationships. More and more people are finding the prospects of living into dementia intolerable. As Norman L. Cantor writes in the Hastings Center Report, “(f)or…people, like myself, protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect. The critical question for those of us seeking to avoid protracted dementia is how best to accomplish that objective.” It’s important for the aging public, as well as the physicians advising them, to be clear about the options that are available.
It's important to note that many individuals diagnosed with dementia still have capacity and therefore have the right to have their diagnoses and prognoses disclosed to them by their physicians. Unfortunately, according the Alzheimer’s Association, such disclosure occurs just under half the time. This means many patients may be missing the opportunity of asserting their right to complete an advance directive and to spell out their wishes about future medical care. For those who do complete advance directives at this point, it seems to me that patients have the clear right to say that they wish to refuse any and all life-prolonging medical treatments from that time on. Obviously, this includes avoiding intubation, G-tubes, dialysis, etc. But what if the patient after entering into a state of dementia is actually doing well? What if he or she seems happy living in a facility or at home, socializes, takes walks, eats heartily, and even interested in sexual activity? What if such a patient contracts pneumonia and has an advance directive indicating no life prolonging treatment? Does this apply to antibiotics that would reverse a life-threating disease and return the patient to his or her former baseline? My answer is yes. But for such simple, non-invasive measures like antibiotics, individuals should state explicitly they wish to refuse them in the advance directive while they have capacity.
But there is still the possibility of a person remaining physically healthy for many years while living in a state of dementia. Unfortunately, advance directives cannot prevent this eventuality. The only option while the individual with newly diagnosed with dementia still has capacity is to preclude entering into dementia by voluntarily stopping eating and drinking, as Cantor points out in his article (VSED). I see no ethical or legal reason why an individual could not make such a decision and act on it.
One final issue that comes up for those who feel strongly about not extending their lives during dementia is around food. One point that should be clear: individuals cannot say in an advance directive that they do not want to be given food during dementia. This would mean that caregivers would have to deny food to hungry patients, thereby allowing them to starve. This seems clearly ethically, and probably legally, unacceptable. Giving food to a person who is physically healthy, even with dementia, is a basic form of comfort care, not directly a life-prolonging type of support. The sticky issue here arises after patients are unable to feed themselves and handfeeding becomes necessary. Can someone say in an advance directive that he or she do not wish to be hand fed under any circumstances?
To me the answer to this question also goes beyond what should be included in an advance directive. Food at this stage of life should be viewed entirely as a source of comfort and should not become a burden. The determination of whether food is a source of comfort or is becoming a burden is a clinical determination. Some patients who have stopped self-feeding may still enjoy food via handfeeding. But when a patient begins to show indifference, it is time to stop. This seems to me a matter of providing the standard of care, which can assure all patients are treated humanely until death.
In conclusion, advance directives are important to avoid unwanted medical interventions, including simple interventions to address life-threatening conditions. But advance directives cannot preclude someone from entering dementia—to do that, one needs to consider VSED while having capacity. At the point of dementia, standard of care comfort care, with an appropriate strategy of feeding, should be provided.
“Exploring ethical issues in TV medical dramas”
by Craig Klugman, Ph.D.
The Good Doctor (Season 3; Episode 11): Anesthesia and addiction; the limits of compassion; The Resident (Season 3; Episode 12): Dying (or not) on your own terms; Suing patients for medical debt; Chicago Med (Season 5; Episode 11): Quid pro quo—switched embryos, safe injection sites; surrogate withdrawal of life support
Carrie is a patient who arrives with a complicated leg fracture after falling while mountain biking.…Full Article
by Craig Klugman, Ph.D.
A world-famous leukemia oncologist lands in the hospital with occlusion to her coronary arteries and a damaged left side of her heart.…Full Article
by Barbara Ross Rothweiler, Ph.D., ABPP & Ken Ross
In the coming year, we celebrate the 50th publication anniversary of On Death and Dying, by Elisabeth Kübler Ross M.D.…Full Article
by Keisha Ray, Ph.D.
Right now in America there is a growing movement to help Americans die well. Organizations like Life Matters Media and Death Over Dinner aim to help people with end of life decision-making and to help people facilitate conversations about death with their families, friends, and communities.…Full Article
by Mark Siegler, MD
Dr. Elisabeth Kübler-Ross graduated from the University of Zurich Medical School, did her residency training at several hospitals in New York City, and then did fellowship training in psychiatry at the University of Colorado.…Full Article
by Craig Klugman, Ph.D.Full Article
by Suzanne van de Vathorst
In 2018, 6126 cases of physician aid in dying (PAD) (4.4% of all deaths) were reported in the Netherlands.…Full Article
Marginally Represented Patients and the Moral Authority of Surrogates
The Inner Lives of Doctors: Physician Emotion in the Care of the Seriously Ill
Everything I Really Needed to Know to Be a Clinical Ethicist, I Learned From Elisabeth Kübler-Ross*
Fifty Years Later: Reflections on the Work of Elisabeth Kübler-Ross M.D.
Recollections of Dr. Elisabeth Kübler-Ross at the University of Chicago (1965–70)
Reweighing the Ethical Tradeoffs in the Involuntary Hospitalization of Suicidal Patients
Physician Aid-in-Dying and Suicide Prevention in Psychiatry: A Moral Crisis?
Medical Aid-in-Dying is an Ethical and Important End-of-Life Care Option
Parity Arguments for ‘Physician Aid-in-Dying’ (PAD) for Psychiatric Disorders: Their Structure and Limits
At age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She sold her home and moved to Kendal at Ithaca, a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.” And now, she’s fighting with that community over her right to determine how she’ll die ― even though she has made her wishes known in writing.Full Article
In an essay for Bioethics Forum earlier this month, Alan B. Astrow concludes that medical aid in dying is not a human right, though I will note that it is a state constitutional right in Montana and a legal right for the terminally ill in 10 other jurisdictions in the United States.Full Article
This is the story of the Rinka family and what happened when tragedy befell them. It’s a story that explores how the choices we prefer when we’re healthy may no longer make sense to us when we’re actually confronting death.Full Article
Three books – written by a doctor, psychiatrist, and nurse – shine light on the emotional toll of providing care for critically ill patients.Full Article
Studies suggest that relatives don’t distract the medical team or interfere with decision-making when a patient is in cardiac arrest.Full Article
Darryl Young suffered brain damage during a heart transplant at Newark Beth Israel and never woke up. But, hardly consulting his family, doctors kept him alive for a year to avoid federal scrutiny.Full Article
Few want to think about their own deaths. And forms rarely capture the complexity of real-life medical decision-making. But there are ways to tackle these and other roadblocks.
While the recent legal battle has been a source of confusion and frustration for terminally ill Californians and their physicians, the eventual fate of this law remains unresolved. Even if there are no additional attempts to invalidate the law, it will “sunset” in 2026. Without further legislative action medical aid-in-dying will disappear from California yet again.Full Article