VSED

When Food and Water Withdrawal is Recommended to Hasten Death

nancyvalko advance directives, Alzheimer's, assisted suicide, culture, dementia, disability, end-of-life, euthanasia, food and water, hospice, law, Living wills, medical ethics, VSED , , , ,

Recently, I was contacted by a man who was concerned about hospice care for his mother.

He wrote:

“I spoke to one hospice service that was recommended and asked about AHN (artificial hydration and nutrition) and I was basically told that if my mother became unconscious, they would not attempt to provide AHN. My mother has dementia and we’ve had a few scares where we were unsure she would recover. I’d like to understand what guideline I should expect the hospice to follow and whether hospice is even worth considering. Are there prescriptive standards of care that I can reference or could you tell me basically what routine care look like?”

I wrote back that I understood his concerns, especially since I recently lost a brother with dementia, diabetes and Crohn’;s disease after a second fall down stairs. H had trouble eating so the doctors recommended a feeding tube.

Unfortunately, a person from palliative care told my sister-in-law that he would not improve so she decided to refuse a feeding tube.

I told her that newer feeding tubes were more comfortable, could make him feel better and were worth a try but she rejected this. She said my brother told her he would not want to I’ve if he developed dementia- like our mother.

It took 4 long days for him to die.

I also told him that I have been writing about this problems for years, including my 2018 blot “‘Living Wills’ to Prevent Spoon Feeding at https://nancyvalko.com/?s=living+wills+to+prevent+spoon+feeding

I have seen the deterioration of medical ethics over 50 years as a nurse from requiring life-sustaining treatment unless it was medically futile or excessively burdensome to whatever is legal.

I would recommend to you two resources from the Healthcare Advocacy and Leadership Organization (HALO):

1, “The Food and Water Dilemma” at https://halovoice.org/wp-content/uploads/5.20.21-Making-a-Difference-8.pdf

2. “Making a Difference: A Guide for Defending the Medically Vulnerable” at https://halovoice.org/wp-content/uploads/5.20.21-Making-a-Difference-8.pdf

CONCLUSION

I have worked in hospice, critical care, etc. for decades and I was glad to be able to care for my patients, my mother and others so that they had dignity, comfort and emotional support at the end of life.

I hope these resources from HALO can help bring vital information, peace and comfort to others and their families.

Victory: “After Initial Hope, Medically Assisted Suicide Bill Won’t Move Forward in Maryland”

nancyvalko ANA, assisted suicide, conscience rights, culture, education, end-of-life, euthanasia, food and water, law, medical ethics, nursing, VSED

In 2019, I testified in Maryland against another “medically assisted suicide” bill that was expected to pass and wrote a blog about it titled “Lessons from the Victory against Assisted Suicide in Maryland”. It failed to pass by one vote.

Now, yet another attempt to pass an assisted suicide bill in Maryland failed by “one or two votes”, according to a Baltimore Sun article titled “After initial hope, medically assisted suicide bill won’t move forward in Maryland”, thanks to efforts like that of Mary Bogdan BSN, MA-C, DNP-S, ALNC who wrote an excellent expert witness testimony stating in part:

“The physician assisted suicide bill has been called many things: medical aid in dying, euthanasia, withholding of food and water, etc., etc., etc. The bottom line is this: I did not become a nurse to kill people. The American Nurses Association (ANA) says that nurses should support patient autonomy, the desire to have control over one’s life. I submit this; if we allow patients to end their lives as desired by them, we subject ourselves to unfathomable consequences.” (Emphasis added)

Note this sentence from the article in the Baltimore Sun “I think that as we slowly got closer to the vote and had more in depth discussions with their constituents, folks just expressed unreadiness to move on it at this time,” Smith said. “I’m obviously very disappointed, but you have to respect the decisions of the individual senators who were listening to their constituents and listening to their conscience.” (Sen. Will Smith is chair of the Judicial Proceedings Committee and a previous sponsor of the bill)

CONCLUSION

Nurse Bogdan’s testimony ends with a powerful quote from Dr.  Harvey Max Chochinov, MD, PhD in his December 2023 recent Medpage article ” Intensive Caring: Reminding Patients They Matter— How to care for those who no longer care about themselves”:

“There is abundant evidence that patients approaching death are susceptible to feeling that they no longer matter. When patients feel life is no longer worth living, healthcare professionals must affirm their intrinsic worth to patients for all that they are, all that they were, and all that they will become in the collective memories of those they will eventually leave behind.” (Emphasis added)

Virginia is now facing SB 280, an assisted suicide bill.

Unfortunately, the assisted suicide proponents never seem to give up and we must continue to be vigilant in every state and continue to educate legislators, healthcare providers, and the general population about these dangerous assisted suicide laws.

INSPIRATIONAL GERONTOLOGIST TRANSFORMED DEMENTIA CARE

nancyvalko Alzheimer's, assisted suicide, Compassion & Choices, dementia, end-of-life, family, food and water, inspiration, medical, medical ethics, mental health, nursing, palliative care, VSED

I don’t normally read obituaries but this obituary I recently read in the January 11, 2024 Wall Street Journal titled “Naomi Feil, Who Transformed Dementia Care, Dies at 91” was inspiring and, most of all, educational!

MY STORY

When I was 13, I became a volunteer in our local nursing home to help feed the elderly patients, some of whom had dementia. I loved it but was told I should be feeding the patients faster instead of listening to their stories.

When I said that these stories were great and really enjoyed by all the patients at the table, the nurses told me that most of the stories were probably not true anyway!

When I began my nursing career in 1969, patients with dementia were often considered just “difficult” or even “crazy”. Some were put in restraints for safety but that just seemed to agitate them more. I found that sitting and listening to them helped a lot.

So I have long had an interest in people with dementia-most often Alzheimer’s disease, not only because of the patients I cared for as a nurse, but also because of my late mother and brother who also have had the condition.

That’s why I have written blogs about the condition such as ““Repairing Our View of Dementia” and “Five Things my Mother (and Daughter) Taught Me about Caring for People with Dementia”, hoping these blogs would help other caregivers, patients and their families.

NAOMI FEIL’S STORY

Naomi’s obituary is subtitled “Instead of forcing people to remember facts, she helped them express their anger and sorrow. She found it made all the difference.”

Here are some excerpts from the obituary:

“Caregivers, struggling to help people with dementia, often see their role as offering scraps of reality—reminding them what year it is, for instance, or who is in the White House.

Naomi Feil had a different strategy. As a social worker in nursing homes, she resisted the impulse to yank disoriented people back to her reality. Instead, she sought to enter their realities and affirm their emotions. Rather than offering a cup of tea or chirping that everything would be fine, she helped her charges express their anger and sorrow—and found they often were more at ease afterward.”

In the 1960s and 1970s, Feil devised what she called the validation method for dementia care. She wrote books, led workshops and established 24 validation-training centers in 14 countries.

Feil’s ideas have become fundamental to what is now called person-centered dementia care, which focuses on discovering individual needs and preserving dignity rather than following standard routines, said Sam Fazio, a senior director of the Alzheimer’s Association. In such care, he said, “You’re meeting them in their reality versus expecting them to meet us in our reality when they are no longer able to do that.” (Emphasis added)

NAOMI’S HISTORY

“When she was 4 years old, her Jewish family fled Nazi Germany. They eventually settled in Cleveland, where her father was the administrator of a nursing home, which doubled as living quarters for her family. Some of her earliest friends were very old people.”

“Her work was with the troublemakers other staff members avoided. These were the blamers, the martyrs, the moaners, the wanderers, the yellers, the pacers, the pounders whom nobody wanted,” she wrote in one of her books, “The Validation Breakthrough.”

“Sometimes nursing assistants tied people to their chairs so they wouldn’t wander off and make trouble. When she tried to engage with these misfits, a nursing assistant scolded her: “You’re getting them all worked up…. You can’t help them. I’ve been working here for five years, and I ought to know.” 

“Feil persisted and gradually learned from her encounters. ‘I learned not to contradict, patronize, argue, or try to use logic or give insight,” she wrote. Instead, she made clear she was listening. If an old person imagined the nurses were stealing her jewelry, Feil might say, ‘You loved that necklace, didn’t you. Who gave it to you?’ She could share the emotion and then explore deeper.” (Emphasis added)”

As a social worker in the 1960s and 1970s, she developed her methods through trial and error. “

“No lies

“She opposed the idea of telling comforting lies. Lies could be detected, even by those who seemed most deluded, and that would destroy trust. When an old woman said she needed to see her mother right away, Feil wouldn’t point out that her mother was dead. Nor would she promise that the mother would visit soon. Instead, she would make it a conversation: ‘You really need to see your mother! What would you like to tell her?’”

“You don’t argue, you don’t lie,” she said in a TEDx talk. “You listen with empathy and you rephrase.”

When old people were weepy, it was a bad idea to tell them things weren’t so bad, she found. It was better to let the tears flow and talk about what made them sad.”

CONCLUSION

While so much more is known now about dementia and developing treatments, many people still consider it a fate worse than death and a burden on their family. Some have even chosen assisted suicide or voluntary stopping or eating and drinking (called VSED) through “right to die” organizations such as Compassion and Choices.

But, as I wrote last February in my blog “Alzheimer’s Association Ends Agreement with Compassion and Choices”, the Alzheimer’s Association has now ended it’s agreement with Compassion and Choices (the pro-assisted suicide organization) stating:

“In an effort to provide information and resources about Alzheimer’s disease, the Alzheimer’s Association entered into an agreement to provide education and awareness information to Compassion & Choices, but failed to do appropriate due diligence. Their values are inconsistent with those of the Association.

We deeply regret our mistake, have begun the termination of the relationship, and apologize to all of the families we support who were hurt or disappointed. Additionally, we are reviewing our process for all agreements including those that are focused on the sharing of educational information.

As a patient advocacy group and evidence-based organization, the Alzheimer’s Association stands behind people living with Alzheimer’s, their care partners and their health care providers as they navigate treatment and care choices throughout the continuum of the disease. Research supports a palliative care approach as the highest quality of end-of-life care for individuals with advanced dementia.” (All emphasis added)

Good for the Alzheimer’s Association and as I can personally and professionally attest, caring for people with dementia can be a wonderful- if sometimes challenging- experience, for healthcare providers and especially the person with dementia and their families!

NAPN Position Paper on AMA Considering New Resolutions on Assisted Suicide

nancyvalko AMA, assisted suicide, Compassion & Choices, law, medical ethics, nursing, suicide, VSED

A May 1, 2023, article by Dallas R. Lawry, DNP, FNP-C, AOCNP® from the University of California, San Diego in the Journal of the Advanced Practitioner in Oncology titled “Rethinking Medical Aid in Dying: What Does It Mean to ‘Do No Harm?’” at Rethinking Medical Aid in Dying: What Does It Mean to ‘Do No Harm?’ – PMC (nih.gov) reveals that:

“Until 2019, the American Medical Association (AMA) maintained that MAID (medical aid in dying aka assisted suicide) was incompatible with their code of ethics and a physician’s responsibility to heal (AMA, 2022)“.

 But now, the AMA Medical Code of Ethics is considering two provisions that support both positions on MAID, including: “Physicians who participate in MAID are adhering to their professional, ethical obligations as are physicians who decline to participate” (AMA, 2019, 2022; Compassion & Choices, 2022) (Emphasis added)

Now, such ethical dissonance has now led the AMA to considering two new resolutions  at the Interim meeting of the AMA House of Delegates on November 10-14, 2023:

“Resolution 4 is to change the position of the AMA on Medical Aid in Dying (Resolution Link).

Resolution 5 is for the AMA to adopt a neutral stance on Medical Aid in Dying (Resolution Link).”

and, as Alex Schadenberg writes:

“It is important to note that Resolution 4 would remove the AMA statement on not performing euthanasia or participating in assisted suicide:

Physicians must not perform euthanasia or participate in assisted suicide. A more careful examination of the issue is necessary. Support, comfort, respect for patient autonomy, good communication, and adequate pain control may decrease dramatically the public demand for euthanasia and assisted suicide. In certain carefully defined circumstances, it would be humane to recognize that death is certain and suffering is great. However, the societal risks of involving physicians in medical interventions to cause patients’ deaths is too great in this culture to condone euthanasia or physician- assisted suicide at this time.

Both resolutions use the term Medical Aid in Dying (MAiD) rather than Physician Assisted Suicide. The term Medical Aid in Dying is not limited to assisted suicide, it also includes euthanasia. The assisted suicide lobby wants to legalize euthanasia (medical homicide) in America.”

NURSES AND ASSISTED SUICIDE

In 1995, the American Nurses Association stated:

“The American Nurses Association (ANA) believes that the nurse should not participate in assisted suicide. Such an act is in violation of the Code for Nurses with Interpretive Statements (Code for Nurses) and the ethical traditions of the profession. “ (Emphasis added)

But in 2017, the ANA revised its’ position on VSED (voluntary stopping of eating and drinking) “with the intention of hastening death” to “People with decision-making capacity have the right to stop eating and drinking as a means of
hastening death.” (Emphasis added)

In 2019, the American Nurses Association revised their position on assisted suicide titled “The Nurse’s Role When a Patient Requests Medical Aid in Dying”, stating that nurses:

“• Remain objective when discussing end-of-life options with patients who are exploring medical aid in dying.

• Have an ethical duty to be knowledgeable about this evolving issue.

• Be aware of their personal values regarding medical aid in dying and how these values might affect the patient-nurse relationship.

• Have the right to conscientiously object to being involved in the aid in dying process. (But “Conscience-based refusals to participate exclude personal preference, prejudice, bias, convenience, or arbitrariness”)

• Never “abandon or refuse to provide comfort and safety measures to the patient” who has chosen medical aid in dying (Ersek, 2004, p. 55). Nurses who work in jurisdictions where medical aid in dying is legal have an obligation to inform their employers that they would predictively exercise a conscience-based objection so that appropriate assignments could be made” (All emphasis added)

But while the ANA is states that “It is a strict legal and ethical prohibition that a nurse may not administer the medication that causes the patient’s death“, it is silent when some states with assisted suicide laws like Washington state’s where Governor Jay Inslee signed a new expansion to the law in April 2023 to “allow physician assistants and advanced nurse practitioners to be one of the medical providers who sign off on the procedure”, “eliminates a two-day waiting period for prescribing the drugs” and “allow the necessary drugs to be mailed to patients instead of picked up in person”. (Emphasis added) https://www.axios.com/2023/04/24/washington-death-with-dignity-law

CONCLUSION

NAPN opposes both AMA resolutions and the ANA policy on assisted suicide, not only for the safety and welfare of our most vulnerable people but also because there are now many state and national medical professional organizations that support assisted suicide, and other problematic ethical issues and this will have a discouraging effect on idealistic, ethical people considering or remaining in health care which would be devastating to our trust in the healthcare system itself.

Catholic Hospital in Canada Under Fire for Naming Euthanasia Provider as Palliative Care Director-Why Should We Care?

nancyvalko AMA, assisted suicide, Compassion & Choices, conscience rights, dementia, disability, economics, education, end-of-life, euthanasia, food and water, futility, hospice, law, media, medical ethics, mental health, nursing, palliative care, terminal/palliative sedation, ventilators/life support, VSED

In a shocking Sep 16, 2023 article from the Catholic News Agency titled Catholic hospital under fire for naming euthanasia provider as palliative care director | Catholic News Agency, Dr. Danielle Kain, a palliative care specialist who is associate professor and division co-chair of palliative medicine at Queen’s University, was appointed to the directorship of palliative care at Providence Hospital in Kingston, Ontario in Canada despite being “is both a staunch proponent and practitioner of euthanasia.”

Providence Hospital is one of 22 health care institutions in Ontario under the sponsorship of Catholic Health Sponsors of Ontario (CHSO). Canada has one of the most expansive assisted suicide laws in the world and is now considering adding people whose sole medical condition is mental illness. (Emphasis added)

The article also states that “Kain has argued that all publicly funded institutions, including Catholic hospitals, should be compelled to offer MAiD (Medical Aid in Dying) She has also expressed support for the Effective Referral Policy: doctors who have conscientious objections to euthanasia must refer patients to MAiD-offering doctors. In a 2016 Twitter post, Kain wrote: “Making an effective referral is not an infringement of rights.” (All emphasis added)

And

“A variety of professional associations of Canadian Catholic health care providers, including the Canadian Federation of Catholic Physicians, have made appeals to both the CHSO and the local ordinary, Archbishop Michael Mulhall, to intervene….but “The archbishop’s office did not respond before publication to a request for comment.” (Emphasis added)

RECENT HISTORY

In 2019, The National Association of Pro-life Nurses joined the Euthanasia Prevention Coalition USA and other organizations in opposing the  Palliative Care and Hospice Education and Training Act (2019) H.R. 647, S.2080 (known as PCHETA) introduced in the US Congress.

We stated that:

“As nurses, we strive to care for our seriously ill, disabled and terminally ill patients with compassion and the highest ethical standards. We applaud the medical innovations and supportive care options that can help our patients attain the highest quality of life possible.

However now many of us nurses are now seeing unethical practices such as assisted suicide, terminal sedation (with withdrawal/withholding of food, water and critical medicines), voluntary stopping of eating, drinking and even spoon feeding, etc. used to cause or hasten death but often called palliative, “comfort” or routine hospice care for such patients.

Such practices are already  considered acceptable by many influential hospice and palliative care doctors like Dr. Timothy Quill, a board-certified palliative care physician, 2012 president of the American Academy of Hospice and Palliative Medicine and promoter of legalizing physician-assisted suicide and terminal sedation.

It is also disturbing the Compassion and Choice, the largest and best funded organization promoting assisted suicide and other death decisions,  has a mission statement stating:

“We employ educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals.”

and a “Federal Policy Agenda / 2016 & Beyond”  goal to:

“Establish federal payment for palliative care consultations provided by trained palliative care professionals who will advocate for and support the values and choices of the patient….” (All emphasis added)

We believe that the Palliative Care and Hospice Education and Training Act (2019) will allow federal funding to teach and institutionalize such unethical practices without sufficient oversight, safeguards or penalties.”

NOW A NEW PCHETA BILL HAS NOW BEEN PROPOSED

The 2019 PCHETA did not pass in Congress but now a new and almost identical version US SB2243 has just been has been introduced into the US Senate.

A new addition is included to “develop and implement a strategy to be applied across the institutes and centers of the National Institutes of Health to expand and intensify national research programs in palliative care in order to address the quality of care and quality of life for the rapidly growing population of patients in the United States with serious or life-threatening illnesses.”(Emphasis added)

A letter of support for the new 2023 PCHETA bill was signed by a multitude of groups including the Alzheimer’s Association, American College of Surgeons, American Academy of Pediatrics, American Geriatrics Society, the American Heart Association, American Psychological Association, Association of Pediatric Hematology/Oncology Nurses, American Academy of Association of Professional Chaplains, Hospice Action Network Hospice and Palliative Nurses Association, Leukemia & Lymphoma Society Motion Picture & Television Fund, etc.

Even the United States Conference of Catholic Bishops (USCCB) and the Catholic Health Association of the United States have also sent a letter of support for the 2023 PCHETA, citing that it “includes crucial clarifications which ensure that the palliative and hospice care training programs abide by the provisions found in the Assisted Suicide Funding Restriction Act of 1997 (P.L. 105-12) and are not furnished for the purpose of causing or assisting in causing a patient’s death for any reason.” Unfortunately, as we have long observed, practices such as terminal sedation, withdrawal of food and water, etc. are routinely called just “patient choice” or routine comfort care-even in Catholic institutions.

And, as lawyer Sara Buscher of the Euthanasia Prevention Coalition USA writes, the 2023 HHS Office of Inspector General’s report cites problems with hospice and she says that the PCHETA’s “safeguards are illusions”, “unenforceable and pretty much meaningless.”

CONCLUSION

In September 3, 2023 article titled ” by Jonathan Turley, a 19 year-old woman with is critically ill with a rare genetic mitochondrial disease that is progressively degenerative but conscious and communicative and on a ventilator, feeding tube and dialysis wanted to be allowed to travel to Canada for an experimental treatment but doctors opposed her plan saying that “she is not accepting the realities of her terminal illness.” She and her family appealed to a court but “Nevertheless, the judge found that she is mentally incapable of making decisions for herself because “she does not believe the information she has been given by her doctors”  and “Accordingly, the court ruled that decisions about ST’s further care should be determined by the Court of Protection based on an assessment of her best interests. Her “best interest,” according to the doctors, is to die.” (all emphasis added)

As lawyer Turley writes: “Thus, the courts have declared that ST cannot choose to continue life-extending treatment and can be forced into palliative care against her will.”

Thus the “choice” of a “right to die” can trump the choice of a right to live and even become a “duty to die”.

We need to be able to trust out healthcare system to provide ethical, life-affirming and compassionate care when we need it most.

A good first step would be to make sure the 2023 PCHETA does not become law.

What are QALYS and Why Should We Care?

nancyvalko assisted suicide, culture, dementia, end-of-life, euthanasia, family, food and water, futility, hospice, law, medical ethics, VSED

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Alzheimer’s Association Ends Agreement with Compassion and Choices

nancyvalko advance directives, Alzheimer's, assisted suicide, dementia, end-of-life, law, Living wills, medical ethics, nursing, palliative care, terminal/palliative sedation, VSED

I was surprised to recently learn that the Alzheimer’s Association had entered into an agreement with Compassion and Choices to “provide information and resources about Alzheimer’s disease”.

Thankfully, the Alzheimer’s Association has now terminated that relationship as of January 29, 2023, stating that:

“In an effort to provide information and resources about Alzheimer’s disease, the Alzheimer’s Association entered into an agreement to provide education and awareness information to Compassion & Choices, but failed to do appropriate due diligence. Their values are inconsistent with those of the Association.

We deeply regret our mistake, have begun the termination of the relationship, and apologize to all of the families we support who were hurt or disappointed. Additionally, we are reviewing our process for all agreements including those that are focused on the sharing of educational information.

As a patient advocacy group and evidence-based organization, the Alzheimer’s Association stands behind people living with Alzheimer’s, their care partners and their health care providers as they navigate treatment and care choices throughout the continuum of the disease. Research supports a palliative care approach as the highest quality of end-of-life care for individuals with advanced dementia.” (All emphasis added)

ALZHEIMER’S DISEASE AND COMPASSION AND CHOICES’ RESPONSE

While countries like Belgium and the Netherlands have legalized assisted suicide for Alzheimer’s, no US state allows this-yet.

In the meantime, Compassion and Choices is the well-funded organization promoting medically assisted suicide laws and VSED (voluntary stopping of eating and drinking) for people in states without assisted suicide laws.

Now, Compassion and Choices has a whole section  on their website titled  “Dementia End-of-Life Care- Identifying your preferences before dementia takes hold” stating that:

“One in two older adults die with Alzheimer’s or another form of dementia” and that ”60% of Americans with dementia receive non beneficial burdensome medical interventions.”

Thus, Compassion and Choices insists that:

“Every mentally capable adult has the right to document their desire to decline medical treatments. In the early stages of dementia, patients may also choose to voluntarily stop eating and drinking. To learn more, go to the Compassion & Choices‘ Dementia Values & Priorities Tool and other resources.” (Emphasis added)

IS VSED REALLY AN EASY WAY TO DIE?

As I wrote in my 2018 blog “Good News/Bad News about Alzheimer’s”:

“Although media articles portray VSED as a gentle, peaceful death, a 2018 Palliative Practice Pointers article in the Journal of the American Geriatric Society  titled “Voluntary Stopping Eating and Drinking” states:

“VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers…The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria (painful urination due to concentrated urine NV), progressive disability, delirium, and somnolence.” (Emphasis added)

Most chillingly, the authors state:

 “Because an individual with delirium may forget his or her intention and ask for drinks of water, caregivers will struggle with the need to remind the incapacitated individual of his or her own wishes. This possibility should be anticipated and discussed with the individual in advance. While reminding the individual of his or her prior intentions may feel like coercion, acquiescing to requests for water will prolong the dying process for someone who has clearly articulated the desire to hasten death.” (Emphasis added)

The authors also state that if the patient’s suffering becomes severe, “proportionate palliative sedation and admission to inpatient hospice should be considered”. This is not the so-called peaceful death at home within two weeks that people envision with VSED.

Lastly, on the legal requirement of a cause on the death certificate, the authors state:

“the clinician may consider including dehydration secondary to the principle illness that caused the individual’s intractable suffering. Although VSED is a self–willed death (as stopping life support might also be), use of the word “suicide” on death certificates in this context is discouraged because in incorrectly suggests that the decision for VSED stemmed from mental illness rather than intolerable suffering.” (Emphasis added)

So, like physician assisted suicide, the real cause of death is basically falsified with the rationale that the deliberate stopping of eating and drinking to hasten death is just another legal withdrawal of treatment decision like a feeding tube.

And as I wrote in my 2020 blog “Caring for an Elderly Relative who Wants to Die”, a doctor trying to help his grandfather who did not have a terminal illness but rather was “dying of old age, frailty, and more than anything else, isolation and meaninglessness” found that just voluntarily stopping food and water (VSED) was too difficult and he had to use “morphine and lorazepam” during the “12 long days for his grandfather to finally die.”.

The lessons this doctor said he learned were that:

“despite many problems with physician-assisted dying (physician-assisted suicide), it may provide the most holistic relief possible for people who are not immediately dying, but rather are done living.”

And

“stopping eating and drinking is largely impossible without knowledgeable family members and dedicated hospice care.” (All emphasis added)

CONCLUSION

Years ago, my mother told me that she never wanted to be a burden on her family.

I never told my children that-especially when they were teenagers and already thought I was a burden to their lifestyles!

Instead, I told them that the “circle of life” includes caring for each other at all ages and stages. Such caring also eliminates future guilt and leaves a sense of pride that we did the best we could for each other during our lives.

When my mother developed Alzheimer’s in the late 1980s (and later terminal thyroid cancer), a friend asked if I was going to feed her. At the time, my mother was fully mobile and able to get ice cream out of the freezer and eat it. I was shocked and offended.

“Do you want me to tackle her?!” I asked my friend.

“Oh, no!”, he answered, “I was talking about a feeding tube later on.”

I told him that my mother would die of her disease, not from deliberate starvation and dehydration.

Near the end of her life, we did spoon feed my mother and she enjoyed it very much before dying peacefully in her sleep.

For decades now, I have enjoyed caring for many people with Alzheimer’s or other dementias both personally and professionally but I remain alarmed by the all too common attitude that people with Alzheimer’s “need to die” either by VSED or physician-assisted suicide.

I am pleased with the Alzheimer’s Association’s decision to end its agreement with Compassion and Choices.