A few weeks ago, a 95 year old friend with chronic congestive heart failure was recovering from a hip fracture and blood clot when she developed a very serious pneumonia. I was with her in the ER when the doctor asked her son and I about how aggressive to be if her heart or breathing worsened. I said “Ask her!” and the doc was stunned when she vehemently said “Yes!”, even after he explained the potential problems with cardiopulmonary resuscitation and ventilators. My friend has a durable power of attorney naming her daughter as her health decision maker but the doctor wrongly assumed my friend was unconscious and that we were her decision makers.
My friend astonished the doctors by recovering with antibiotics and temporary BiPap (a face mask machine to support her breathing). After a stint in rehab, my friend was able to go home last week.
It was because of mistaken but potentially fatal situations like this that I wrote my 2015 blog “Living with ‘Living Wills” about the history, uses, problems and pitfalls with living wills and other end-of-life documents known as advance directives.
NURSES PUSHING “LIVING WILLS”
Just last week, however, I read two articles by nurses uncritically promoting “living wills”, one in a major nursing journal and one in the LA Times.
The nursing journal article titled “Nurses in the Know: The History and Future of Advance Directives” by Blanca Miller, PhD, RN extolls the benefits of signing an advance directive like a “living will”, durable power of attorney, etc. Ms. Miller insists that nurses have an important role to play in promoting and implementing these documents.
She starts with a history of “living wills” beginning with Louis Kutner’s 1969 law journal article but ignores its’ title “Due Process of Euthanasia: The Living Will, A Proposal” (emphasis added) and the decades long fight to legalize euthanasia in the US by the Euthanasia Society of America (later renamed the Society for the Right to Die and now known as Compassion and Choices)
When lawyer Kutner proposed his novel document for a person to sign that “if the individual’s bodily state becomes completely vegetative and it is certain that he cannot regain his mental and physical capacities, medical treatment shall cease,” it was a breakthrough moment, according to Nurse Miller.
The next year, The Euthanasia Society of America distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law called the “Natural Death Act” and other states quickly followed.
Nurse Miller apparently sees no downside to such documents despite medical articles like “When Advance Directives Can be Dangerous” and cases like Helga Wanglie’s where doctors went to court to force her family to withdraw life support but a judge upheld Ms. Wanglie’s husband’s right to make medical decisions for her.
Instead Nurse Miller warns that:
“Projections indicate that by 2030, over half of the 8.5 million Americans over 85 years of age will suffer from dementia and have no spouse or children to care for them. Healthcare professionals will be increasingly confronted with concerns regarding individual autonomy and end of life decisions.”
And bemoans that:
“Although federal law requires healthcare providers and institutions to give patients advance directive forms, most patients do not complete them. Completion rates currently range from 18% to 31%.”
Most disturbingly, Nurse Miller approvingly writes that:
“Advance directive laws are still evolving. As seen in (Brittany) Maynard’s case, Oregon’s Death with Dignity Act (1997) allows patients not only to reject possible life-saving treatments but also to actively accelerate death.”(Emphasis added)
Also pushing “living wills” in a LA Times article “You Should Make Decisions about End-of-life Care Now”, ICU nurse Kristen McConnell states that “the American healthcare system never taught the public that preventing a natural death often results in a wholly unnatural life” and describes “an elderly patient with a history of strokes and dementia who was brought to the emergency department after another large stroke.” She describes caring for him:
“When I am face to face with a patient like this — someone who will never again be able to communicate, and who has been placed on the treadmill of continuous medical care — I feel the same type of shame as when I walk by a cold, crippled homeless person on the sidewalk. The wrongness is just as obvious.”
When I worked as an ICU nurse, I saw similar attitudes among some of my colleagues who said such patients “need to die” even when these patients wanted medical treatment. These nurses criticized these patients’ care as a waste of time and money. Personally, I found it difficult to work with these nurses and, as a potential future patient, I would not want them caring for me.
Unfortunately, such attitudes can become infectious.
In 2012, I wrote an article “Right to Health Care, Duty to Die?” about the disturbing changes I was seeing in healthcare.
Here is an excerpt:
Recently, I had a startling glimpse into the possible future nightmare facing both healthcare and nursing when I read “How Can We Afford to Die?” in the May-June 2012 issue of Nursing Economic$. (No, the “$” is not a typo but evidently a mindset.)
This influential nursing journal, written by nurse educators and others in health care policy positions, devoted the whole issue to death, dying, and cost containment. The agenda quickly became clear as the costs at the end of life were endlessly cited, but concerns about potential abuses were dismissed and conscience rights were not even mentioned in the six articles I read…
In the editorial for this issue of Nursing Economic$ , Donna M. Nickitas, PhD, RN unapologetically even advocates for “punitive reimbursement policies for excessive end-of-life treatments that only prolong life.”
If enacted, such penalties will certainly intimidate many doctors regarding how aggressively to treat you if you are terminally ill, elderly, critically or chronically ill, or even potentially disabled.
This issue of Nursing Economic$ was given in conjunction with the Hospice-Palliative Care Action Plan presented at the Fifth Nursing Economic$ Summit “How Can We Afford to Die?” on June 6, 2012 in Washington, DC, in which an 8-point action plan was also presented. One of the points discussed the importance of getting everyone over the age of 18 to sign “living wills” and other advance directives. But this point had one interesting caveat: “if many patients have advance directives that make positive, cost-conscious systemic change impossible, most of the other efforts discussed as part of our action plan will go for naught”. (emphasis added).
In other words, not choosing a potentially premature death can upset the economic imperative to reduce health care costs.
In the years since “How Can We Afford to Die?”, I constantly saw new cost-containment measures and government mandates introduced at my institution . I am not surprised that there are now high levels of burnout and depression reported among doctors and nurses, including “moral distress”.
Before my mother developed Alzheimer’s and cancer, she would tell me that she never wanted to be a “burden” on her children. She never was and I would never tell my children the same thing.
We need to expunge the idea of people as “burdens” and embrace the words of the late Dame Cicely Saunders, nurse, physician and writer, and founder of the true hospice movement:
“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”