dementia

New Dementia Directive Developed to Avoid Late-Stage Dementia

nancyvalko advance directives, Alzheimer's, assisted suicide, Cancer, culture, dementia, end-of-life, euthanasia, food and water, law, medical, medical ethics

In the September 25, 2025, issue of the Journal of Law, Medicine and Ethics, there is a shocking article titled “New VSED Advance Directive: Improved Documentation to Avoid Late-Stage Dementia.” VSED means voluntary stopping of eating and drinking.

The authors state:

“People use advance directives to express preferences that direct their future care when they lack decision-making capacity. One form of advance directive, a “dementia directive,” records preferences about living in various stages of dementia. This is important because many Americans want to avoid living with advanced progressive dementia. Unfortunately, traditional advance directives cannot dependably achieve this goal. In contrast, some dementia directives can achieve this goal by directing cessation of manually assisted feeding and drinking. (Emphasis added)

We proceed in six stages. First, we review the prevalence of advanced dementia. Second, we identify the disadvantages of another option for accomplishing the goal of not living into advanced dementia, preemptive VSED. Third, we distinguish notable court cases where dementia directives were unsuccessful. Fourth, we review nine prominent dementia directives, noting how the Northwest Justice Project’s Advance Directive for VSED remedies those shortcomings. Fifth, we review this directive’s legal status. Sixth, we articulate its ethical justification.”

CONCLUSION

I have had a lot of experience caring for people with Alzheimer’s, both personally and professionally. I have written several blogs over the years, such as “Five Things my Mother (and Daughter) Taught Me about Caring for People with Dementia” (2016), Marketing Death and Alzheimer’s Disease (2019), and Alzheimer’s Association Ends Agreement with Compassion and Choices, Marketing Death and Alzheimer’s Disease (2023). In 1988, I wrote an op-ed published in the St. Louis Post-Dispatch titled “FEEDING IS NOT EXTRAORDINARY CARE– DECISION IN THE NANCY CRUZAN CASE ADDS TO THE LIST OF EXPENDABLE PEOPLE“

I remember when my mother was first diagnosed with Alzheimer’s and thyroid cancer. She needed a tracheostomy (a tube in her windpipe), but was able to eat by mouth.

I was shocked when one doctor asked if we wanted her fed, and I responded angrily, “She gets up and eats ice cream out of the refrigerator! Do you want me to tackle her?!”

Of course, I knew what he meant, but he got the message.

Eventually, my mother died peacefully in her sleep at a nursing home after enjoying a meal and laughter with the whole family. It was the kind of death she told me she wanted.

Unfortunately, my younger brother developed Alzheimer’s and diabetes and was critically injured in a fall down the stairs last October. I was able to calm him and carefully feed him.

The doctor recommended a feeding tube to ensure he was getting adequate nutrition, especially for his diabetes.

However, a palliative care team was called in and disagreed with the doctor, telling my sister-in-law that my brother was not going to get better anyway.

I explained to the family that a small feeding tube was available and comfortable, but the family rejected that option.

It took several long days for him to die.

No wonder assisted suicide is being considered for Alzheimer’s patients!

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.

We Will Not Comply

nancyvalko aging, Alzheimer's, assisted suicide, conscience rights, culture, dementia, disability, education, end-of-life, euthanasia, law, pro-life, suicide, ventilators/life support

In an excellent article in the June 28, 2024 Christian Post Reporter titled “‘Despair over hope’: Pro-life nurses group ‘will not comply’ with Delaware’s assisted suicide bill”,

As reporter Samantha Kamman reported:

“A national coalition of pro-life nurses (NAPN, the National Association of Prolife Nurses) says they “will not comply” with Delaware’s assisted suicide bill that passed in the Senate Tuesday as the state’s lone Catholic diocese is calling on people of faith to urge Democratic Gov. John Carney to veto the legislation. “

Ms Kamman explains that:

“H.B. 140 passed in the Senate with an 11-10 vote and will become law unless Carney vetoes it. Under the proposed law, adult patients who are “terminally ill” or have received the prognosis that they have six months or less to live can request or self-administer drugs to hasten their deaths.

Both the individual’s attending physician or attending advanced practice registered nurse (APRN) and a consulting physician or APRN must agree on the patient’s condition and decision-making capacity. Two waiting periods must pass before the patient can receive the drugs to end their life, and medical professionals who prescribe the medication must provide the patient the opportunity to rescind the request to kill themselves. 

The law would also grant immunity to medical professionals who offer life-ending drugs to patients, so long as they are “acting in good faith and in accordance with generally accepted health-care standards under this Act.” As the bill states, those “acting with negligence, recklessness, or intentional misconduct do not have criminal or civil immunity.” (All emphasis added)

THE RESPONSE

The National Association of Pro-Life Nurses, which has advocated against assisted suicide legislation for over 30 years, condemned the bill, calling it a “moral catastrophe that corrupts the very soul of healthcare.”

Marie Ashby, NAPN’s executive director, argued in a statement to The Christian Post that the bill “preys” on “the desperate and devalues the disadvantaged,” adding that it offers “poison as a perverse form of mercy” to people society deems “inconvenient.”

“Legitimate healthcare heals; it doesn’t kill,” Ashby added. “This law perverts our profession’s sacred duty, turning nurses from guardians of life into agents of death. We will not be silent. We will not comply.”

NAPN President Dorothy Kane contends, “Delaware has chosen death over dignity, despair over hope.” (All emphasis added)

CONCLUSION-two personal stories

My Daughter Marie Killed Herself Using an Assisted Suicide Technique

In 2009, I lost a beautiful, physically well 30-year-old daughter, Marie, to suicide after a 16-year battle with substance abuse and other issues. Her suicide was like an atom bomb dropped on our family, friends and even her therapists.

Despite all of our efforts to save her, my Marie told me that she learned how to kill herself from visiting suicide/assisted suicide websites and reading Derek Humphry’s book Final Exit. The medical examiner called Marie’s suicide technique “textbook final exit” but her death was neither dignified nor peaceful.

Marie was not mere collateral damage in the controversy over physician-assisted suicide. She was a victim of the physician-assisted suicide movement, seduced by the rhetoric of a painless exit from what she believed was a hopeless life of suffering.

Adding to our family’s pain, at least two people close to Marie became suicidal not long after her suicide. Luckily, these two young people received help and were saved, but suicide contagion, better known as “copycat suicide”, is a well-documented phenomenon. Often media coverage or publicity around one death encourages other vulnerable people to commit suicide in the same way.

The Effect on our Healthcare System

Think the assisted suicide won’t affect you or our healthcare system?

Think again.

As I wrote in my 2018 blog “They are Lying to Us“:

“Several years after Oregon’s law was passed, I was threatened with termination from my job as an intensive care unit nurse after I refused to participate in a deliberate overdose of morphine that neither the patient nor his family requested after an older patient experienced a crisis after a routine surgery.

The patient had improved but did not wake up within 24 hours after sedatives used with a ventilator were stopped. It was assumed that severe brain damage had occurred and doctors recommended removing the ventilator and letting the patient die.

However when the ventilator was removed, the patient unexpectedly continued to breathe even without oxygen support. A morphine drip was started and rapidly increased but the patient continued to breathe.

When I refused to participate in this, I found no support in my hospital’s “chain of command” so I basically stopped the morphine drip myself, technically following the order to “titrate morphine for comfort, no limit.”

The patient eventually died (without food or other treatment) after I left but ironically, a later autopsy requested by the family showed no lethal condition or brain injury as suspected.

The physician who authorized the morphine demanded that I be fired.

I was spared because I argued that I followed the order to “titrate morphine for comfort” by stopping the morphine when he was comfortable!

The family never knew the real story.

We need to reject legalized healthcare provider assisted suicide not only for seriously ill, elderly and disabled but also for ourselves, our loved ones and the integrity of our medical system!

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!

Intensive Caring: Reminding Patients They Matter

nancyvalko assisted suicide, Cancer, culture, dementia, disability, end-of-life, medical ethics, nursing

Last month, there was a beautiful article on Medpage titled “Intensive Caring: Reminding Patients They Matter-How to care for those who no longer care about themselves” by Harvey Max Chochinov, MD, PhD.

Dr. Chochinov quotes Dame Cicely Saunders, the founder of the modern hospice movement, for her famous statement “”You matter because you are you, and you matter to the last moment of your life”.

That statement became an integral part of medical and nursing education in the past and a powerful argument against the current push for legalizing medically assisted suicide.

As Dr. Cochinov states in his article;

“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)

and

” A foundational element of this approach is nonabandonment, which demands committed, ongoing care and caring, even when patients no longer care about themselves. Absent someone who cares, suffering, like cancer, can grow, spread, and even kill.” (Emphasis added)

and in contrast:

“Intensive caring sees healthcare professionals hold or contain hope when patients can no longer do so themselves. This means expanding one’s therapeutic imagination to include the possibility that patients may find psychological, spiritual, and physical comfort, tolerable suffering, and for those near the end, a peaceful death. Toward the end of life, hope tends to conflate with meaning and purpose and may be nurtured through connections to those who, or things that, matter.” (Emphasis added)

MY EXPERIENCE

As a new nurse, I was nervous when I was assigned to terminally ill patients.I asked the senior nurses how to approach these patients and if I should be solemn or cheerful. The senior nurses said they didn’t know.

So I came up with a plan. After I clocked out after my shift, I started just visiting with them and listening to whatever they had to say.

I found that there were two basic questions that needed to be answered: “What do you want?” and “What are you afraid of?”

These patients opened up about wanting to die at home without burdening their families and not being in terrible pain at the end. I was able to tell them about good home healthcare options, pain management and being open with their doctors and families. This opened the door to great conversations and often even a lot of laughter!

(I was later chastised by some nurses who criticized the laughter coming from these rooms. I responded by asking them who needed to laugh more than patients in these situations?)

I also started spending time with the relatives who had questions of their own. They were relieved to talk about their fears and sadness and wanted to know how to help their loved ones.

Once, on an on an oncology (cancer) floor, an elderly woman with terminal cancer told me that she wished she could have just one more overnight sleepover with her granddaughter before she died. I told the other nurses and they all enthusiastically joined in with snacks and sodas to make it happen during one night shift, remembering their own special times with their grandmothers.

It was a great success, even though I was caught by an administrator who said I should not make this a habit.

In another case, an elderly woman with advanced cancer was considering another chemo treat but confided that she feared becoming more of a “burden” on her daughter’s family with whom she lived.

I told her that I had just spoken to her daughter the day before and the daughter told me how grateful she was for her mother’s presence and help. For example, the daughter said that since she and her husband both worked, they were relieved to have the mother there for their school-age children when classes ended. The daughter told me how the children loved climbing into bed with grandma and telling her about their day.

My elderly patient was almost reduced to tears by this revelation but then she laughed and admitted that sometimes she fell asleep when the children were talking to her.

I told my patient that whatever else she needed to consider before agreeing to the chemo, fear about being a “burden” should be eliminated.

CONCLUSION

Sadly, Dr. Chochinov cites studies that have shown when patients feel abandoned and bereft of care, they are more likely to contemplate or die by suicide. In addition, he cites studies on the desire for death in the terminally ill “report lower family support relative to those who don’t.”

According to an October 4, 2023 Medical Net news article “Review of Oregon’s assisted dying law finds significant data gaps”:

“Since 2017, fear of being a burden has been cited by around half of those opting for assisted death“. (Emphasis added)

It’s important to remember that no one has to be a medical professional to ask a friend, neighbor, church member, etc. in difficult circumstances to ask “What can I do to help?”.

Just visiting with the person, watching tv with them or bringing a favorite food can be a real day brightener and give family members a much needed boost.

Personally, I know how lonely it can be taking care of a loved one with a terminal illness or a disabling condition without the support of friends or family. Family caregivers also need support and encouragement.

But I also know the wonderful benefits of helping others, both personally and professionally, even just by being there.

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.

The National Association of Pro-Life Nurses: We Care About All Lives

nancyvalko abortion, Alzheimer's, AMA, ANA, assisted suicide, Cancer, culture, dementia, disability, drug addiction, education, end-of-life, grief, law, media, medical ethics, nursing, pro-life

Recently, I was contacted by a college political science professor who is writing a paper about “pro-choice and pro-life viewpoints” and she wanted to know more about the National Association of Pro-Life Nurses.

I was delighted and we had a long conversation about what motivates pro-life people-and especially nurses.

I told her about our National Association of Pro-life Nurses and the why and how we do what we do. Our motto since the organization began in the 1970s is “Take my hand, not my life”.

The professor seemed surprised that the pro-life movement is founded on caring rather than the common misperception of politics and political power.

Instead, as I told her, the pro-life movement is about helping people in crisis situations from conception to death and educating people about upholding the excellent, life-giving ethics and laws that protect all lives from conception to natural death.

It is also not about being judgmental but rather about truly caring and offering help to desperate people in crisis situations and the people around them before-or even after- a person has chosen abortion or is considering medically assisted suicide. (see “Pro-Life and Other Resources for Help and Information to Protect Human Life”)

And this works!

Many people are surprised when they find out that even NBC News admits that:

“More than 2,500 crisis pregnancy centers operate in the country, outnumbering abortion clinics nearly 3 to 1 by some estimates. Critics, as well as supporters, have said the number of women seeking support at them has grown quickly in the 11 months since federal abortion rights were overturned, which resulted in the closing of abortion clinics in dozens of states. ” (Emphasis added)

And as pro-life nurses who care for everyone-not just in hospitals and crisis pregnancy centers, but also in prisons, at home in poor and sometimes dangerous areas, in homeless situations, etc., we are truly interested in helping instead of judging people.

Our message is “We Care” and I have yet to meet a pro-life nurse who isn’t also involved in some sort of volunteer work.

CONCLUSION

In my 50+ years as a nurse, I have worked in burn units, medical and surgical units, burn units, dialysis, intensive care, oncology (cancer), hospice and home health. I have also cared for relatives and friends with terminal illnesses, dementia, critical heart defects, cancer, disabilities, severe psychosis, suicide, drug addiction, teen pregnancy, etc. but never once was I tempted to end a life.

Just as doctors used to take the Hippocratic Oath that said ” I will not give a lethal drug to anyone if I am asked, nor
will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.”, new nurses used to take the Nightingale Pledge that said ” I will abstain from whatever is deleterious and mischievous, and will not take or knowingly administer any harmful drug.”

Unfortunately, today these oaths are little used or changed to allow for formerly illegal practices and this has harmed both professions and to the detriment of healthcare and public trust.

I have also been a newspaper reporter and writer for several publications but  in 2015, I started my blog “A Nurse’s Perspective on Life, Healthcare and Ethics” to report on the many healthcare ethics controversies and I often use my personal and professional stories to show resources and how to help people in difficult circumstances.

Most of all, I have seen the power of “I Care/We Care” to help people and their families at some of the most desperate times of their lives and I am proud to be a member of the National Association of Pro-life Nurses.

Please join us and/or follow NAPN on Facebook.

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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“Repairing Our View of Dementia”

nancyvalko Alzheimer's, Compassion & Choices, culture, dementia, medical ethics

I have written often on the subject of dementia, most recently in my blog “Alzheimer’s Association Ends Agreement with Compassion and Choices” about the lethal discrimination against people with dementias like Alzheimer’s.

Having cared for a mother with Alzheimer’s as well as many patients and relatives of friends with dementia, I have found great satisfaction working with people with dementia. Helping them enjoy activities like music, tv, talking about past and present memories and laughing has been a real joy for me. Dementia does not automatically rule out a sense of humor or insight.

So I was delighted to find an article “Repairing Our View of Dementia“ in the Journal of the American Medical Association Neurology.

The author, Sujal Manohar, BS, BA, wrote:

“It is a rewarding experience each time I lead a virtual art gallery tour for adults with dementia. Though we are over 1000 miles apart physically and multiple decades apart in age, we connect over artwork through the Reflections Program at the Nasher Museum of Art at Duke University. However, I did not expect that one comment from a participant—sparked by an art piece—would lead me to reconsider societal expectations and our care of adults with dementia.” (Emphasis added)

“As I shared images of the Radical Repair Workshop, 1 participant was intrigued by the idea of broken objects. He asked the group what we do with things when they are broken. Reflecting on his own experience, he questioned what we could do with him now that he was broken. He paused for a moment, then wondered aloud whether he had any use. He was well aware of his cognitive changes, insidious yet undeniable; the participant knew he was not functioning the way he once did.” (Emphasis added)

Mr. Manohar responded:

“I explained that these artworks showed us that all objects are valuable, even if they do not serve their original purposes. They can come together to make something beautiful. I emphasized that objects can be used in various ways and everyone has challenges and differences—that does not mean they aren’t valuable.” (Emphasis added)

Mr. Manohar also encourages using not only the perspectives of caregivers and healthcare professionals but also the person experiencing dementia, his or her social history and finding ways to give the person purpose that accentuate their strengths rather than focusing on their challenges..

He also makes a good point that helping people with dementia find meaning in in their lives many also help their caregivers who often experience can experience depression and difficulty managing their own feelings while providing support.

Mr. Manohar’s insights and positive attitude can hopefully help our society reevaluate the worth and value of people with dementia and improving their lives as well as those who care for them..

Our society itself desperately needs this.

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.