An April, 2019 study in the Journal of the American Medical Association titled “Attitudes Toward Physician-Assisted Death From Individuals Who Learn They Have an Alzheimer Disease Biomarker” found that  approximately 20% of cognitively normal older adults who had elevated beta-amyloid — a biomarker that is thought to increase the risk of Alzheimer’s disease — said they would consider physician-assisted suicide if they experienced a cognitive decline. Not everyone with amyloid plaques goes on to develop Alzheimer’s disease.

Although no state with legalized physician-assisted suicide currently allows lethal overdoses for people with Alzheimer’s or other dementia, Emily Largent, JD, PhD, RN (one of the authors of the  study) said that:

“Our research helps gauge interest in aid-in-dying among a population at risk for developing Alzheimer’s disease dementia and grappling with what they want the end of life to look like”

And

“Public support for aid-in-dying is growing…Now, we are seeing debates about whether to expand access to aid-in-dying to new populations who aren’t eligible under current laws. That includes people with neuro-degenerative diseases like Alzheimer’s disease.”

CHOOSING DEATH

As the U.S. birth rate declines to a 32-year low  while people are living longer, now there are more people older than 65 than younger than 5. This has major economic and cultural implications, especially with diseases such Alzheimer’s that usually affect older people.

Back in 2012, I wrote about a Nursing Economic$ Summit “How Can We Afford to Die?” that had an 8 point action plan. One of the points discussed the importance of getting everyone over the age of 18 to sign “living wills” and other advance directions that also included the 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).

It should not be a surprise that the latest Oregon physician-assisted suicide report shows that 79.2% of those people dying by assisted suicide were age 65 or older and most reported concerns such as “loss of autonomy” and “burden on family, friends/caregivers”.

With Alzheimer’s disease routinely portrayed as the worst case scenario at the end of life for a person (and their family), there are now programs to “help” people plan their own end of life care.

Such programs include Death Cafes where “people drink tea, eat cake and discuss death” and the Conversation Project that is “dedicated to helping people talk about their wishes for end-of-life care.” The Conversation Project was co-founded by journalist Ellen Goodman after years of caring for her mother, who had Alzheimer’s.

Compassion and Choices (the former Hemlock Society) is the largest and best funded organization working for decades to change laws and attitudes about assisted suicide and other deliberate death options. Compassion and Choices now has a contract rider for people in assisted living facilities that:

 “will respect Resident’s end-of-life choices and will not delay, interfere with nor impede any lawful option of treatment or nontreatment freely chosen by Resident or Resident’s authorized healthcare proxy or similar representative, including any of the following end-of-life options” which include:

“Forgoing or directing the withdrawal of life-prolonging treatments

Aggressive pain and/or symptom management, including palliative sedation,

Voluntary refusal of food and fluids with palliative care if needed

Any other option not specifically prohibited by the law of the state in which Facility is located.” (Emphasis added)

CONCLUSION

I have both a professional and personal interest in Alzheimer’s disease.

Having taken care of a mother with Alzheimer’s until her death, I treasure many of the moments I had with her. It is possible to both begin the eventual mourning and still appreciate the special moments that indeed do come. My mom was a very high-strung woman who constantly worried about everything. The Alzheimer’s calmed her down somewhat and especially blunted her anxiety about the presence of a tracheotomy for her thyroid cancer.

One of my favorite memories is sitting on a couch with my mom on one side and my then 2 year-old daughter on the other. Sesame Street was on and I noticed that both Mom and my daughter had exactly the same expression of delight while watching the show. A friend thought that was sad but I found it both sweet and profound that their mental capacities had intersected: One in decline, one in ascension. Perception is everything.

Also, I often took care of Alzheimer’s patients as a nurse and I enjoyed these patients while most of my colleagues just groaned. Even though such patients can be difficult at times, I found that there is usually a funny, sweet person in there who must be cared for with patience and sensitivity. I found taking care of people with Alzheimer’s very rewarding.

And although I might be at a higher risk of developing Alzheimer’s disease myself because of my mother, I won’t be taking a test for biomarkers to try to predict the future.

Instead, I will spend my time living the best life I can and hopefully helping others. I believe that life is too  precious to spend time worrying about things that might happen.

This article was originally published at NancyValko.com.

As I have written before, I was almost fired for refusing to increase a morphine drip “until he stops breathing” on a patient who continued to breathe after his ventilator was removed. The doctors mistakenly presumed he had a massive stroke and thus was irreparably brain-damaged. I was told at that time that giving and increasing the morphine even though the patient showed no discomfort was merely “comfort care” that would “prevent pain.” I knew it was euthanasia.

I remembered this terrible incident when I read the April 1, 2019 Federalist magazine article “This Belgian Nurse Watched Euthanasia Turn Pain Management Into A Death Prescription”

Belgium has had legalized euthanasia for many years, including organ donation euthanasia and now even minors and psychiatric patients. But Sophie Druenne, a palliative care nurse, reached her breaking point when she had to call a doctor back to give another lethal injection when the patient didn’t die from the first injection. Sophie caught herself laughing at the absurdity of the situation at first but then realized the horror of the situation and began to question Belgium’s so-called social experiment with euthanasia.

What changed Sophie’s opinion was working in Belgium’s integrated palliative care (IPC) system. Palliative care is “medical aid that treats symptoms of a typically serious disease rather than the disease itself, which sometimes cannot be treated or not easily.” However Belgium’s euthanasia framework now includes integrated palliative care in the framework.

As the article states, palliative care used to be defined by the anti-euthanasia beliefs of its founder, Dame Cicely Saunders, a British nurse who developed holistic care for the dying in the 1940s. Dame Saunders believed that “that a patient’s request for euthanasia represented a failure to adequately care for the patient’s spiritual, emotional, and social needs.”

Although Belgium tried to reconcile Dame Cicely Saunders’ standard with its euthanasia laws, Sophie observed that the guiding intention to relieve suffering changed from “first, do no harm” to “first, relieve suffering.” This allowed euthanasia to become an “easy” solution that could effectively nullify even patient consent.

Sophie finally left Belgium to take a position in Paris at a hospital where terminally ill patients are treated with traditional palliative care

THE SITUATION IN THE US

Recently I was giving a talk on assisted suicide/euthanasia when I noticed that a woman in the audience was visibly upset. After I finished, I went over to her to ask if I said something that upset her. She responded that she was a nurse for 30 years and, when I related the story about the morphine overdose I refused to give, she said that she suddenly realized the truth of what was happening in her hospital. She started to cry while I held her hand. She was devastated just like the Belgian nurse.

Palliative care is a wonderful holistic approach to evaluating the patient’s needs beyond just the physical but it must not include causing death.

Unfortunately, a recent Delaware assisted suicide bill  actually tried to define assisted suicide as a palliative care option.

Currently, hospice/palliative care is held up as a good way to combat assisted suicide. However,  Compassion and Choices touts  that “(a) growing number of national and state medical organizations have endorsed or adopted a neutral position regarding medical aid in dying (physician-assisted suicide) as an end-of-life option for mentally capable, terminally ill adults.”

Barbara Coombs Lee, CEO of Compassion and Choices even issued a 2017 “Call to the Palliative Care Community for a Patient-Centered Response to Medical Aid in Dying (aka physician-assisted suicide)” stating that assisted suicide actually “could improve the image and acceptance of palliative care” by taking a position of  “engaged neutrality” that “indicates that it is a professional organization’s obligation to provide its members with the clinical guidelines, information, and tools they need if they choose to support their patients’ requests” for assisted suicide.” (Emphasis added)

Not surprisingly, Compassion and Choices had supported the 2016  “The Palliative Care and Hospice Education and Training Act” (reintroduced this year as H.R. 647) that would provide millions of dollars in grants or contracts to “increase the number of permanent faculty in palliative care at accredited allopathic and osteopathic medical schools, nursing schools, social work schools, and other programs, including physician assistant education programs, to promote education and research in palliative care and hospice, and to support the development of faculty careers in academic palliative medicine.” (Emphasis added)

Fortunately, a provision was added to forbid federal assistance to any health care item or service causing or assisting death such as assisted suicide. Since then, the Compassion and Choices website has been silent on the Act.

CONCLUSION

Over the years, the public has been told that assisted suicide is a humane answer to emotional and physical suffering at the end of life. But if doctors, nurses and their professional organizations come to agree with this, we all will lose the protection of truly ethical healthcare that rejects causing death as a solution. We must be able to trust that our healthcare system will  give us the care we need and deserve, especially at the end of our lives.

We cannot become like Belgium.

This article was originally published at NancyValko.com.

In 2013, the American Nurses Association (ANA) stated this : “The American Nurses Association (ANA) prohibits nurses’ participation in assisted suicide and euthanasiabecause these acts are in direct violation of Code of Ethics for Nurses with Interpretive Statements (ANA, 2001).” (Emphasis added)

But now in 2019, the ANA is proposing a new position paper to change this. Not only is the ANA attempting to change its previously used term assisted suicide to “aid in dying” (the approved term of Compassion and Choices), but also the Code of Ethics itself.

The draft position paper is titled “The Nurse’s Role When a Patient Requests Aid in Dying”.  There is an online form for public comments which must be submitted before April 8, 2019. There is no requirement that you have to be a member of ANA or even a nurse to make a public comment. The ANA can also be contacted by email at customerservice@ana.org or by phone at 1-800-284-2378.

There is much in the draft position that I find shocking both as a nurse and a patient. For example, the draft position begins:

“It is the shared responsibility of professional nursing organizations to speak for nurses collectively in shaping health care and to promulgate change for the improvement of health and health care” and “(t)he nurse should remain non-judgmental when discussing end of life options with patients, who are exploring AID” (a.k.a. physician-assisted suicide). (Emphasis added)

This statement flies in the face of the way nurses have traditionally cared for patients considering suicide, whether they are terminally ill or not. Unfortunately, this follows the lead of several medical, nursing and hospice/palliative care organizations that have changed their positions on assisted suicide to “neutrality” or even support.

The ANA draft also states, “The nurse has the right to conscientiously object to being involved in the AID process” but “Nurses are obliged to provide for patient safety, to avoid patient abandonment, and to withdraw only when assured that nursing care is available to the patient.”  (Emphasis added)

The draft suggests that such nurses can “ensure the ongoing care of the patient considering AID by identifying nurse colleagues willing to provide care.”

This is forced cooperation and does nothing to protect nurses’ conscience rights. Such a position would impact not only current nurses but also potential future nurses who have strong ethical principles against helping patients kill themselves.  Many nurses already are worried about the impact of other ANA positions, such as the 2017 “Nutrition and Hydration at the End of Life”  which states, “People with decision-making capacity have the right to stop eating and drinking as a means of hastening death. (Emphasis added)

In a section titled Social Justice, the draft position states:

“Nurses must continually emphasize the values of respect, fairness, and caring,”(ANA, 2015a, p.35). Statutes that allow AID are not present in every state, which presents geographic inequity in terms of access. Additionally, AID medication is expensive, which presents an additional barrier to access for those who cannot afford it, even if they live in a jurisdiction or state where this option is legal. Nurses act to reduce or eliminate disparities. While this is most commonly associated with health promotion and disease prevention, the current AID landscape raises questions of fairness which require ethical reflection.” (Emphasis added)

I find it outrageous to encourage nurses to become social justice warriors  fighting for more access to assisted suicide and cheaper lethal overdoses. And one recommendation in the ANA draft position eliminates all doubt about a radical departure from the 2013 Code of Ethics prohibition of  “participation in assisted suicide”: “Nursing research is needed to provide an evidence base for AID.”

NON-JUDGMENTALISM: IS IT REALLY IN OUR PATIENTS’ BEST INTERESTS?

When I first met “Frank” (not his real name) many years ago, I was puzzled. Frank was a terminally ill man who had just been admitted to my oncology unit for control of his “unbearable pain.” However, Frank didn’t seem to be in any physical pain.

I talked privately to Frank’s wife, Joan, who tearfully confided that Frank was cleaning his gun collection when he asked her if she would still be able to live in their home if, in his words, “anything happened.”

Joan said she knew he was talking about shooting himself and even though she was horrified, she said she thought the right thing to say was: “I will support any decision you make.” However, she later panicked and called the doctor to say that Frank was having unbearable pain. The doctor agreed to admit him and ordered morphine to be given as soon as he arrived.

When I suggested to Joan that Frank’s real question might not be about their home but rather about whether his lingering dying might be too hard on them both, she was stunned. This had never occurred to her. She said she loved Frank and she wanted to care for him until the end. I told her that she and her husband needed to talk.

Frank and Joan then finally had a long overdue open discussion about their sorrow and fears. I told the doctor what I discovered and when I last saw Frank and Joan later that day, they were holding hands and smiling as they left the hospital.

I learned that Frank died peacefully — and naturally — a few weeks later with his wife at his side.

I believe that this situation shows how being “non-judgmental” can itself be lethal. Unfortunately, the public as well as we healthcare professionals are being given the message that a patient’s “right to self-determination” is the most important ethical principle.

What I did with Frank and his wife was a lot like a recent UCLA project started when California legalized physician-assisted suicide. The project showed that “most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss.” The project also found that “only” 25% of these patients seeking assisted suicide went on to use assisted suicide.

When someone is suicidal, it should not matter whether they are terminally ill. Instead, we should treat them with the same care and concern we would give a physically healthy suicidal person.

Anything less would be discrimination and I am telling this to the ANA.

This article was originally published at NancyValko.com

With the American Medical Association considering changing its’ long-standing opposition to physician-assisted suicide despite the recommendations of its’ ethics committee and the California assisted suicide law declared unconstitutional now reinstated pending appeal, assisted suicide/euthanasia groups like Compassion and Choices (the well-funded former Hemlock Society) are ramping up efforts nationwide to legalize assisted suicide.

Along with major media outlets overwhelmingly supporting their efforts and a recent Gallup poll showing  that the “Majority of Americans (73%) Remain Supportive of Euthanasia”, how do we fight against this and educate the public?

One excellent answer can be found in the recently released 80 minute film “Fatal Flaws”.

“Fatal Flaws” features filmmaker Kevin Dunn who spent three years traveling throughout Europe and North American asking the question “should we be giving doctors the right in law to end the life of others by euthanasia or assisted suicide?”

In the film, Mr. Dunn respectfully interviews people and experts on both sides of the issues and the candid testimonies are powerful and moving. I have viewed the film myself and I believe that showings of this film to senior citizen groups, pro-life groups, churches and clergy, medical professionals, etc. would go a long way in educating the public, many of whom are supportive  or unsure of where they stand.

The film was produced in association with The Euthanasia Prevention Coalition. For information on purchasing the  “Fatal Flaws” film and/or the accompanying pamphlets, please go the Euthanasia Prevention Coalition “Fatal Flaws” site.

There will be a preview viewing of the film at the National Right to Life Convention June 29, 2018. Watch the trailer here:

On a personal note: I am speaking at the NRL convention myself on the Alfie Evans’ case June 30, 2018 and I would love to meet those of you attending the convention.

This article was originally published at NancyBalko.com