Month: January 2024

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!

Are “Anti-abortion activists” Really Looking “To Rebrand Themselves As Not Religious”?

nancyvalko abortion, assisted suicide, conscience rights, culture, euthanasia, law, medical ethics, nursing, pro-life

Last May, I was interviewed by Dr. Anne Whitesell, an Assistant Professor of Political Science at Miami University “as part of a research project to understand the work of pro-life organizations post-Dobbs and common misconceptions about the movement.”

Dr. Whitesell was very gracious during the interview, 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 because we call about all lives.

I also told her that the National Association of Pro-life Nurses was not a religious organization but rather open to nurses of any religion or none.

I explained how the National Association of Pro-life Nurses is a “registered non-profit organization that brings nurses together who look for excellence in advancing ethics in nursing practice “and “seeks to establish and protect ethical values of the nursing profession. The organization educates its members on a wide range of bioethical issues” from conception to natural death”.

I also told Professor Whitesell that we are 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”)

Our motto is “I Care” and we even have developed a button with that simple message for our nurses to wear.

PROFESSOR WHITESELL’S NOVEMBER 6, 2023 ARTICLE

Professor Whitesell said she would send me a copy of her eventual article but instead I discovered her November 6, 2023 article titled “As Ohio and other states decide on abortion, anti-abortion activists look to rebrand themselves as not religious.”

Here are some excerpts:

“My research shows that anti-abortion organizations in the U.S. fall into one of three camps. Some are openly religious. Others may have religious staff, but refrain from using religion in their advocacy. A small proportion outright reject the use of religion.

“In my interviews, anti-abortion rights activists said they understood that the public views their movement as anti-woman and driven by conservative Christians. More recently, the movement has adopted pro-woman messaging to counter the perception that they do not support women.

These organizations are increasingly choosing to speak less about religion and more about human rights and science to combat the narrative that the anti-abortion movement is solely a Christian movement.”

and

“Most of the activists I interviewed said their organization does not have a formal stance on religion. Approximately one-quarter of the 45 activists I interviewed, however, said their organizations are explicitly Christian. (Emphasis added)

Professor Whitesell concludes that:

“Instead of using religion to bolster their arguments against abortion, these activists frame abortion as a human rights issue. For them, any loss of human life is tragic, whether it is from abortion, war or the death penalty.

This kind of framing could help the anti-abortion movement shift conversations about abortion away from religious beliefs.” (All emphasis added)

CONCLUSION

Unfortunately, the abortion rights movement’s animus against using religious beliefs in discussions about abortion has real world consequences.

For example, a January 16, 2024, CNA article titled “Religious Americans’ lives possibly at risk in 2024, new report by U.S. bishops says” states:

“Since the overturn of Roe v. Wade in the June 2022 Supreme Court Dobbs v. Jackson Women’s Health Organization decision, attacks against the Catholic Church as well as pro-life organizations have risen considerably. The bishops said that annual hate crime statistics gathered by the FBI in 2022 reported anti-Catholic crimes as nearly 75% higher than for any other bias.“

All this is compounded with, the bishops said, a “general failure” on the part of the “federal government to apprehend and prosecute the perpetrators of such attacks.” (All emphasis added)

It is disheartening that articles like Professor Whitesell’s and most mainstream news reporting about abortion and the pro-life movement continue to misrepresent the “anti-abortion movement” as primarily religious rather than a movement based on science, human rights and, above all, helping those involved in crisis situations.

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.