dementia

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.

“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.

Good Healthcare Tips To Help the Elderly

nancyvalko culture, dementia, end-of-life, mental health

My first volunteer work was feeding elderly patients in a local nursing home when I was 13. Although I was nervous at first, I came to love being with these elderly patients and especially hearing their stories.

After I graduated from nursing school in 1969, I took care of many elderly patients in ICU, oncology, kidney dialysis and home health/hospice as well as my own relatives and friends. I learned a lot from all these people about the special needs of older patients and have written about them in my blogs.

 In 2018, I wrote a blog titled “Don’t Write Off the Elderly”  about “Melissa” (not her real name), my friend who is also the mother of one of my best friends and who died recently at the age of 99 years, 9 months and 5 days.

Melissa had wonderful care from her family, caregivers and spiritual support but she also had some difficult situations with the healthcare system. Thankfully, these situations were resolved and Melissa died peacefully and comfortably in her own home, as she had hoped.

So I was delighted to see this wonderful article at ‘Medical Methuselahs’: Treating the Growing Population of Centenarians (medscape.com) from the website Medscape for healthcare professionals that can help not only doctors and nurses but also older people and their friends and families.

Although this article is mainly about people who reach 100, it has observations and tips that can help other older people over 65. And as an older person myself, I really appreciate the positive outlook in this article.

Although the article is longer than most other Medscape articles, it is well worth reading for anyone who is older or who has elderly friends and/or relatives.

Here are some excerpts and all emphasis is mine:

1.“Priya Goel, MD is a New York doctor who works for a national home healthcare company that primarily serves people older than 65. Dr. Goel has observed that although some of the ultra-aged live

in nursing homes, many continue to live independently. They require both routine and acute medical care.

Dr. Goel urges her colleagues not to stereotype patients on the basis of age, saying that:

“You have to consider their functional and cognitive abilities, their ability to understand disease processes and make decisions for themselves… Age is just one factor in the grand scheme of things.” Dr. Goel visits her patients aged 65 and up in their homes to provide herself with insights into how well they’re doing, including the safety of their environments and the depth of their social networks.

2. Geriatrician Thomas Perls, MD says “”People can age so very differently from one another” and agrees that “that healthcare providers and the lay public should not make assumptions on the basis of age alone as to how a person is doing. People can age so very differently from one another,” he said and that:

“Up to about age 90, the vast majority of those differences are determined by our health behaviors, such as smoking, alcohol use, exercise, sleep, the effect of our diets on weight, and access to good healthcare, including regular screening for problems such as high blood pressure, diabetes, and cancer. “People who are able to do everything right generally add healthy years to their lives, while those who do not have shorter life expectancies and longer periods of chronic diseases,” Perls said.

“Paying diligent attention to these behaviors over the long run can have a huge payoff” and

“Centenarians are the antithesis of the misguided belief that the older you get, the sicker you get. Quite the opposite occurs. For Perls, “the older you get, the healthier you’ve been.“

3. “We have to be very cognizant of what we call a typical presentation of disease or illness and that a very subtle change in an older adult can signal a serious infection or illness,” Baker said. “If your patient has a high fever, that is a potential problem.”

The average temperature of an older adult is lower than the accepted 98.6° F, and their body’s response to an infection is slow to exhibit an increase in temperature, Baker said. “When treating centenarians, clinicians must be cognizant of other subtle signs of infection, such as decreased appetite or change in mentation,” she cautioned.

A decline in appetite or insomnia may be a subtle sign that these patients need to be evaluated, she added.”

4. Environmental changes, such as moving a patient to a new room in a hospital setting, can trigger an acute mental status change, such as delirium, she added. Helping older patients feel in control as much as possible is important.

“You want to make sure you’re orienting them to the time of day. Make sure they get up at the same time, go to bed at the same time, have clocks and calendars present ― just making sure that they feel like they’re still in control of their body and their day,” she said.”

6. And, in a very important observation: 
“Dr. Flomenbaum, a pioneer in geriatric emergency medicine, says physicians need to be aware that centenarians and other very old patients don’t present the same way as younger adults.

He began to notice more than 20 years ago that every night, patients would turn up in his ED who were in their late 90s into their 100s. Some would come in with what their children identified as sudden-onset dementia ― they didn’t know their own names and couldn’t identify their kids. They didn’t know the time or day. Flomenbaum said the children often asked whether their parents should enter a nursing home.

 “And I’d say, ‘Not so fast. Well, let’s take a look at this.’ You don’t develop that kind of dementia overnight. It usually takes a while,” he said.”
 Dr. Flomenbaum also said: 
“The decline in hearing and vision can lead to a misdiagnosis of cognitive impairment because the patients are not able to hear what you’re asking them. “It’s really important that the person can hear you ― whether you use an amplifying device or they have hearing aids, that’s critical,” he said. “You just have to be a good doctor.” 

Often the physical toll of aging exacerbates social difficulties. Poor hearing, for example, can accelerate cognitive impairment and cause people to interact less often, and less meaningfully, with their environment. For some, wearing hearing aids seems demeaning ― until they hear what they’ve been missing.
 I get them to wear their hearing aids and, lo and behold, they’re a whole new person because they’re now able to take in their environment and interact with others,” Perls said.” 

Dr. Flomenbaum said alcohol abuse and drug reactions can cause delirium, which, unlike dementia, is potentially reversible. Yet many physicians cannot reliably differentiate between dementia and delirium, he added.”

7. The geriatric specialists talk about the lessons they’ve learned and the gratification they get from caring for centenarians.

“I have come to realize the importance of family, of having a close circle, whether that’s through friends or neighbors,” Goel said. “This work is very rewarding because, if it wasn’t for homebound organizations, how would these people get care or get access to care?”

For Baker, a joy of the job is hearing centenarians share their life stories.”

CONCLUSION

In helping to care for many elderly people over many decades, I can attest to the wisdom and hope of these experts.

Aging itself is not a terminal disease and it can be a wonderful time to spend more time with loved ones and reflect on how much we have learned and can still enjoy in every stage of life!

Pain, Choice, and Canada’s now “most permissive euthanasia legislation in the world”

nancyvalko assisted suicide, Cancer, Compassion & Choices, culture, dementia, disability, economics, end-of-life, euthanasia, hospice, law, medical ethics, mental health

In his excellent July 10, 2022 blog, Alex Schadenberg, chair of the International Euthanasia Prevention Coalition, reveals that now “Canada’s medical assistance in dying (Maid) law is the most permissive euthanasia legislation in the world”.

He says “Canada’s MAiD law currently allows suicide facilitation for persons with disabilities and is on track to expand in March 2023 to those living with mental illness. “ (Emphasis added)

How did assisted suicide/euthanasia laws get so far and so fast down the proverbial “slippery slope”?

In my December, 2016 blog “Pain and ‘Choice’”,  I wrote about how I saw the warning signs when I was a new nurse in 1969.

Here is my blog:

PAIN AND “CHOICE”

December 15, 2016 nancyvalko 

It was 1969 and I was fresh out of nursing school when I was assigned to a patient I will call “Jenny” who was thirty-two years old and imminently dying of cancer. She was curled up in her bed, sobbing in pain and even moaned “just kill me.” The small dose of Demerol I injected into her almost non-existent buttocks every four hours “as needed” was not helping. I reassured Jenny that I was immediately calling the doctor and we would get her more comfortable.

However, I was shocked when the doctor said no to increasing or changing her medication. He said that he didn’t want her to get addicted! I told him exactly what Jenny said and also that she was obviously very close to death so addiction would not be a problem. The doctor repeated his no and hung up on me.

I went to my head nurse and told her what happened, but she told me I had to follow the doctor’s order. Eventually, I went up the chain of command to the assistant director of nursing and finally the Chief of the Medical Staff. The verdict came down and I was threatened with immediate termination if I gave the next dose of Demerol even a few minutes early.

I refused to abandon Jenny so for the next two days before she died, I spent my time after my shift sitting with her for hours until she fell asleep. I gave her whatever food or drink she wanted. I stroked her back, held her hand and told stories and jokes. I asked her about her life. I did everything I could think of to distract her from her pain and make her feel better. It seemed to help, although not enough for me. I cried for Jenny all the way home.

And I was angry. I resolved that I would never watch a patient needlessly suffer like that again.

So, I educated myself by reading everything I could about pain medicine and side effects. I also pestered doctors who were great at pain control to teach me about the management, precautions, and rationale of effective pain management. I used that knowledge to advocate and help manage my patients’ pain as well as educating others.

I was delighted to see pain management become a major priority in healthcare and even called “the fifth vital sign” to be evaluated on every patient. I saw new developments like nerve blocks, new drugs, and regimens to control pain and other techniques evolve as well as other measures to control symptoms like nausea, breathlessness, and anxiety. Now we also have nutritional, psychological, and other support for people with terminal illnesses and their families.

Best of all was that I never again saw another patient suffer like Jenny despite my working in areas such as ICU, oncology (cancer) and hospice.

TWENTY-FOUR YEARS LATER

When my oldest daughter was 14, she attended a public high school where the science teacher unexpectedly started praising the infamous Dr. Jack Kevorkian and his public campaign for legalized assisted suicide and euthanasia.  Kevorkian’s first reported victim was Janet Adkins, a 54 year old woman with Alzheimer’s in no reported physical pain who was hooked up to a  “death machine” in the back of a rusty van. Mrs. Adkins was just the first of as many as 130 Kevorkian victims, many if not most of whom were later found to have no terminal illness. Kevorkian escaped prosecution-even after he harvested a victim’s organs and offered them for transplant-until the TV show 60 Minutes aired Kevorkian’s videotape showing him giving a lethal injection to a man with ALS (Lou Gehrig’s disease). Shockingly, Kevorkian served only 8 years in prison before he was paroled and eventually became a media celebrity peddling assisted suicide and euthanasia.

My daughter, who never before showed any interest in my speaking and writing on the topic of assisted suicide, now stood up and peppered her teacher with facts about Kevorkian. The teacher asked her where she learned her information and she answered, “From my mom who is a cancer nurse”.

Sarcastically, he responded “So your mother wants to watch people suffer?” My daughter responded “No, my mother just refuses to kill her patients!” End of discussion.

CONCLUSION

But not the end of the story. Tragically, we now have legalized assisted suicide in several states and serious efforts  to expand it to include people without physical pain but with conditions like Alzheimer’s, mental illness or other psychological distress as well as even children.

As Wesley Smith recently and astutely observed:

 “Moreover, the statistics from Oregon and elsewhere show that very few people commit assisted suicide due to physical suffering. Rather, the issues are predominately existential, such as fears of being a burden or losing dignity

The public is being duped by groups like Compassion and Choices that campaign for legalized assisted suicide on the alleged basis of strict criteria for mentally competent, terminally ill adults in unbearable physical pain to freely choose physician-assisted suicide with (unenforceable) “safeguards”.

The emerging situation throughout the world is more like Kevorkian’s dream of unfettered and universal access to medical termination of the lives of “expendable” people. How much easier is that when people with expensive mental health problems, serious illnesses or disabilities can be encouraged to “choose” to be killed?

Palliative Care and Artificial Intelligence for Predicting Death

nancyvalko Compassion & Choices, dementia, economics, end-of-life, law, medical ethics, palliative care

Working in areas like critical care, oncology (cancer) and hospice for over 45 years, I know that it is often hard to predict how long someone may live or when that person may die.

I have seen very ill or injured people with an optimistic prognosis  unfortunately die and I have seen people expected to die very soon who recovered and went on to live for years. Back then, we used pain and other specialists, social workers, ministers, etc. for all our patients when needed. Some of our patients went into hospice.

In recent years, a new specialty called palliative care was developed to improve the quality of life for patients who have a serious or life-threatening disease with the goal of preventing or treating as early as possible, the symptoms and side effects of the disease and its treatment, in addition to any related psychological, social, and spiritual problems.

So I was very interested to read a July 1, 2020 article in StatNews titled “An experiment in end-of-life care: Tapping AI’s cold calculus to nudge the most human of conversations about using cutting-edge artificial intelligence (AI) models in palliative care that scan patient hospital medical records and generate emails to doctors about their patients considered most likely to die within a year.

In the case of one doctor who received such an email,  she “was a bit surprised that the email had flagged” her patient who was in his 40s and seriously ill with a viral respiratory infection and too sick to leave the hospital. She thought “Why him? And should she heed the suggestion to have that talk?”

As the article states, those kinds of questions are increasingly cropping up among health care professionals at the handful of hospitals and  clinics around the country using such AI models in palliative care, stating that:

The tools spit out cold actuarial calculations to spur clinicians to ask seriously ill patients some of the most intimate and deeply human questions: What are your most important goals if you get sicker? What abilities are so central to your life that  you can’t imagine living without them? And if your health declines, how much are you willing to go through in exchange for the possibility of more time?“ (Emphasis added)

Some clinicians and researchers defend this AI by saying that doctors are “stretched too thin and lacked the training to prioritize talking with seriously ill patients about end-of-life care”.

Not surprisingly, the leaders of this palliative care AI discourage doctors from mentioning to patients that they were identified by an AI system because, as one doctor put it, ”To say a computer or a math equation has predicted that you could pass away within a year would be very, very devastating and would be really tough for patients to hear.”

Shockingly, while this AI is built around patients’ electronic health records, this article admits that some AI models also “sample from socioeconomic data and information from insurance claims.” (Emphasis added)

CAN AI RELIABLY PREDICT DEATH?

As the article admits, AI predictions of death “are often spotty when it comes to identifying the patients who actually end up dying” and that there has not been “a gold-standard study design that would compare outcomes when some clinics or patients are randomly assigned to use the AI tool, and others are randomly assigned to the usual strategies for encouraging conversations about end-of-life care.” (Emphasis added)

Nevertheless, using AI death predictions for earlier palliative care interventions is now also being tried for conditions like dementia. And last year in Great Britain, AI was touted as “better than doctors” in analyzing heart tests to determine which patients would die within a year.

ARE THERE OTHER AGENDAS?

The idea of basing medical decisions on a computer program to predict death is disturbing enough but there may be other agendas involved.

For example, in a May, 2020 Cancer journal article titled  “Leveraging Advances in Artificial Intelligence to Improve the Quality and Timing of Palliative Care”, the authors called palliative care “a discipline of increasing importance in the aging population of the industrialized nations.”  (Emphasis added

And according to a Hospice News article last year:

“Studies have found that palliative care saves health plans, health systems, and accountable care organizations close to $12,000 per person enrolled, as well as reducing hospital readmissions, emergency department visits, and hospice lengths of stay. “

Now Compassion and Choices (the former Hemlock Society) is not only fighting to legalize medically assisted suicide throughout the US, it has also been active in promoting training and expansion of palliative care with federal funding and now calls assisted suicide “one option in the palliative continuum” and that knowing assisted suicide “is an option is in itself palliative care.” (Compassion and Choices already maintains that VSED (voluntary stopping of eating and drinking) is already an ethical and legal means of ending life in the US.)

Even worse, a large and growing number of medical organizations-including the American Academy of Hospice and Palliative Medicine (AAHPM)-have endorsed or taken a neutral position on the issue of physician-assisted suicide.

CONCLUSION

An artificial intelligence program predicting death cannot replace the importance of an ethical healthcare provider who knows and truly respects the lives of his or her patients.

Good palliative care can be wonderful but, as I have written before, palliative care can go horribly wrong when misused.

We need to know the difference before we are able to trust that our own healthcare providers will  give all of us the care we need and deserve, especially at the end of our lives.