Compassionate, informed advice about healthcare decision making

Archive for the ‘Dementia’ Category

VSED by Advance Directive — An Alternative to Prolonged Dying

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Margot Bentley

Margot Bentley did not want to spend her last days in the way she spent her last days. Hers was a fate almost all of us wish to avoid. She told her family her wishes, and she put them in writing. Yet, Voluntary Stopping Eating and Drinking by Advance Directive (VSED by AD) did not work for her.

In my last blog, “She Fasted to Hasten Death — VSED,” I introduced the idea of VSED. It is a legal and morally acceptable way to hasten death when faced with a terminal or chronic illness one finds unbearable. This option is only open to people with the presence of mind to notice that they are in a state they would consider intolerable.

As a nurse, Margot Bentley cared for many patients in the advanced stages of dementia. She let her family know, and put it in writing, that if she ever progressed to severe dementia, she would like hand feeding withheld to allow her to die a natural death. When that time came, her family asked the care facility to honor their mother’s wishes and stop the hand feeding.

The facility refused, saying that Mrs. Bentley indicated she had changed her mind because she opened her mouth and received food offered to her.

Advanced-stage dementia patients may:

  • Require around-the-clock assistance with daily personal care.
  • Lose awareness of recent experiences as well as of their surroundings.
  • Experience changes in physical abilities, including walking, sitting, and — eventually —  swallowing.
  • Have difficulty communicating.
  • Become vulnerable to infections, especially pneumonia.

Source: “Stages of Alzheimer’s,” Alzheimer’s Association website

Everyone I know would like to avoid ending their days lying in a nursing home bed, unable to recognize family, dependent on others to wipe their bottoms, and help with all activities of daily living. People can live for years in this final stage of dementia. I have told my family to stop hand feeding when my time comes.

Margot Bentley’s family had to navigate the court system in British Columbia to try and comply with their mother’s expressed desire. The courts denied their request.

VSED by AD: A new frontier of end-of-life care

I have been chaplain for several patients who were allowed to die a natural death after the cessation of hand feeding. The families were convinced that their person would not want to be sustained by even hand feeding. Their deaths were peaceful within days of the withdrawal of food and water.

From: End of Life Choices NY advance directive

All these patients were in the most advanced stages of dementia. Even hand fed, these patients would probably not have lived more than a few months. I would have felt better had the patient left written directions, such as a living will or other advance directive. But these families felt certain they were requesting what the patient would have wanted if they could have spoken.

Here are links to three websites that provide information on VSED by AD; each includes a sample form:

End of Life Choices, New York

Final Exit Network

The Dartmouth Dementia Directive

I personally would like to avoid a prolonged dying from dementia. I want to spare my family the expense and emotional toll of watching me die by inches. I know it will be hard to invoke my advance directive, yet, they will have confidence that this is the way I want to go.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

I’m On a Podcast This Week

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I am interviewed by Dr. Saul Ebema on the “Hospice Chaplaincy Show” this week. He has a great podcast for hospice chaplains that I listen to regularly. Click here for access to the show.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

Being Sued for SAVING the Life of a Patient

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“I’ll drag mother down to my car and take her to the emergency room myself,” she told me.

The patient had left verbal and written instructions that she did not want to have life-saving treatments when she was dying. A “No CPR” order was on her chart. Knowing her daughter’s feelings, the old lady chose her son as her power of attorney. She conspicuously omitted any mention of her daughter in the document.

I met this patient, her son, and daughter while I was a nursing home chaplain. By that time, the patient had severe dementia, so healthcare decisions were in the hands of the son. The daughter commented about taking her mom to the emergency room in one of our earlier conversations.

A recent issue of Hospice News featured a story about how healthcare institutions are open to lawsuits if they do not honor a patient’s wishes to refuse life-sustaining treatment. We almost always think it is the right thing to save a life. But there are cases of “wrongful life.” That is, saving a patient’s life who had chosen to let a natural death happen.

As it typically happens, the nursing home patient I ministered to went into a slow downward decline. Even the daughter eventually realized that when her mother’s heart finally stopped, it was time. Thankfully, there was no schlepping the poor old lady into the car.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

It’s Your Choice: You Can Change Your Views of Aging and Improve Your Life

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I seldom picture myself becoming a demented, incontinent, and disabled patient in a nursing home. My future may indeed look like that because both of my parents ended up in such a state. On top of that, I cared for hundreds of such patients as a chaplain. Many of them were my current age (74) or younger. Why not me?

I did prepare for such a future, having bought long-term care insurance twenty years ago. Again, my parents’ aging convinced me to get the policy. They both used every dollar from their nursing home insurance benefits.

Choosing more positive aging

An article I read recently prompted these thoughts. It was titled, “It’s Your Choice: You Can Change Your Views of Aging and Improve Your Life.” Here is how it starts:

Becca Levy, a professor at Yale University, studies the way our beliefs about aging affect physical and mental health.(JULIA GERACE)

“People’s beliefs about aging have a profound impact on their health, influencing everything from their memory and sensory perceptions to how well they walk, how fully they recover from disabling illness, and how long they live.

“When aging is seen as a negative experience (characterized by terms such as decrepit, incompetent, dependent, and senile), individuals tend to experience more stress in later life and engage less often in healthy behaviors such as exercise. When views are positive (signaled by words such as wise, alert, accomplished, and creative), people are more likely to be active and resilient and to have a stronger will to live.”

Being blind is “wonderful”

I remember asking an 80-something-old patient at the nursing home what it was like being blind. She said, “Wonderful. You learn so much being blind. I can tell who is coming into my room by the sound of their footsteps. I listen to talking books. It is just one learning experience after another.” That lady would be one of those resilient folks mentioned in the article.

Judith Graham of Kaiser Health News interviewed Yale professor Dr. Becca Levy about her newly-released book, Breaking the Age Code: How Your Beliefs About Aging Determine How Long and Well You Live. The bottom line is that if we have a more positive and hopeful view of aging when we are younger, we will more successfully move through those years to the end.

In the interview, Dr. Levy gives several suggestions on assessing our attitudes and how to develop more positive ones. Maybe someday I, too, can say being blind is “wonderful.”

 

 

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

She Moved Her Hand to my Thigh — THAT was far enough

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Music engaged dementia patients

She put her hand on my knee. I fed her a few more bites of lunch. Then, she moved her hand to my thigh. I placed it in her lap and said, “Eleonor, let’s keep our hands to ourselves.” She looked at me and said, “I didn’t mean anything by that.”

It was just another day in the memory care unit of the nursing home where I was chaplain for twelve years. I had found a way to minister to those who have dementia. Bible studies did not work because these poor souls could not track such a discussion. I could also bring my guitar and sing gospel songs with them.

Hand-feeding became a ministry tool. My mind went back 30 years to my lunchtimes at the nursing home as I listened to a recent GeriPal podcast titled, Understanding the Variability in Care of Nursing Home Residents with Advanced Dementia.

Avoiding Tube Feeding and Hospitalizations for Advanced Dementia Patients

Artificial feeding tube

In their typical entertaining style, the hosts and guests on the podcast discussed the latest research on caring for advanced dementia patients in nursing homes. The researchers wanted to find out the difference between nursing homes that had poor outcomes in the care of the patients and those that did not. The specific outcomes they were looking for were feeding tube use and multiple hospitalizations for advanced dementia patients.

I have written previous blogs about the harmful effects of feeding tube use in advanced dementia patients hereand here. A decline in eating and weight loss is expected in advanced dementia patients. Putting in a feeding tube does not make them live longer and makes their lives so much more miserable.

Likewise, multiple trips to the hospital are a tremendous burden on these patients and do not extend their lives. I previously wrote about my friend whose family refused hospitalization as his dementia advanced. I quoted his wife as the title of my blog, “We didn’t want to put him through that again.”

Good and Bad Outcomes in Nursing Homes

The question for these researchers was, “What are the characteristics of nursing homes that have low feeding tube use and fewer hospital transfers of advanced dementia patients?” They found four differences in the cultures of the facilities with good outcomes as opposed to poor outcomes:

Careful hand feeding

  1. We found their physical environment was drastically different; where those with low feeding tube rates had really a rather beautiful physical environment. The other nursing home had wallpaper peeling off the walls and a strong smell of urine.… Every day, they had a different cooking contest so that there was food throughout the facility, and all day long.”
    2. “We also saw the decision-making processes were different. Whereas the home with the low rate of feeding tube use involved families in decision making. We didn’t see that in the high rate nursing home.”
    3. “We also saw care processes were different. You think the number of staff available to feed people; feeding for people with advanced dementia is very time consuming and takes a lot of hands and a lot of time.”
    4. “Then finally, we saw that their implicit values were different. We saw that the nursing home with a low rate of feeding tube use really valued comfort and valued keeping people in the facility.… Whereas the nursing home with the high rate of feeding tube use were more concerned with regulations, making sure that they didn’t get any dings on their surveys, and were really concerned about maintaining people’s weight.”

 

In my years at the nursing home, I would often go to the memory care unit at lunch and tell the nurses I would like to help feed patients. I clarified, “I don’t want any spitters or chokers.” It became a ministry for me. It turns out, thinking of this podcast, I was helping reduce the use of feeding tubes.

Eleonor was the only flirt I encountered in my years feeding patients. She and all the others deserved just a little time for hand feeding. I was glad to be part of such a caring culture.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

 

Ending Cancer Screenings at MY Age

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I have entered a medical-screening twilight zone. When I was in my 60s, I always got colon and prostate cancer screenings. Now, at 74, I am thinking about stopping the screenings.

Photo by Hush Naidoo Jade Photography on Unsplash

JAMA Internal Medicine recently published a research letter — “Comparison of US Cancer Center Recommendations for Prostate Cancer Screening With Evidence-Based Guidelines.” The guidelines recommend that all men 50–70 years old have an annual screening, regardless of their risk factors for prostate cancer. They suggest the patient and clinician share the decision to do this screening.

The clinician should also inform the patient of both the risks and benefits of the screening. There are downsides to prostate cancer screenings at any age — false positives, misdiagnoses, and overtreatment. Treatment can cause urinary, bowel, or sexual function problems — things I would rather avoid.

Why stop at 70? Turns out, the research shows that annual screenings of men with no other risk factors for prostate cancer do NOT reduce their chance of dying of all causes. In other words, both men who did and did not get screened lived about the same number of years.

My greatest fear is dementia

My greatest fear is that I spend my last years with Alzheimer’s, fully demented and a great burden to my family. Once I get that diagnosis, I would welcome an earlier death by cancer.

Years ago, I heard the story of a woman in a nursing home who no longer recognized her family because of dementia, and she had a mastectomy. They saved her life so she could get more demented.

I did not know this woman and her family well enough to hear about their decision-making process. Perhaps, the patient had stated before losing her mind that she wanted everything done to keep her alive. Maybe, her physicians told the family they had to do the surgery and gave them little choice.

I do not judge this family and their decisions. I take it as a warning for my family and me.

In my case, let the cancer grow

If I live to my 90s but am confined to a wheelchair in a memory-care unit, I do NOT want to be checked for cancer. We do not allow euthanasia in this country, but we do respect a patient’s right to refuse treatment. For me, in the presence of dementia, I would want cancer to run its course. Perhaps this could save my family years of heartaches.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

You Can’t “Prevent” Alzheimer’s! But You Can “Reduce the Risk!”

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She was the most unhappy, most angry, and most sad dying person I ever worked with as a hospice chaplain.

She thought she had done everything to prevent cancer. She was a “fitness nut.” She meditated. She did yoga. She read books on spiritual and self-help topics. She ate the healthiest of diets. She got cancer anyway.

Once diagnosed, she turned to alternative medicine to save her life. She had heard so much about those miracle cures and she wanted that, too. She doubled down on her lifestyle she had adopted to prevent the cancer in the first place.

She never got to acceptance. In my view, her biggest mistake was believing she could “prevent” cancer rather than just “reduce the risk.” Even nonsmokers can get lung cancer.

Reducing Risk vs. Preventing

I thought of this patient as I was rereading an article I had found helpful about reducing the risk of dementia. I was surprised how it was titled — “The SHIELD Plan to Prevent Dementia.” (I referenced this “plan” in a previous blog about Alzheimer’s.) As with cancer, you can’t totally prevent getting Alzheimer’s. But you can reduce the risk.

Below is Dr. Oz’s spin on the research of Dr. Rudolph Tanzi (I would drop the word “prevent” and call it  The SHIELD Plan to Reduce the Risk of Alzheimer’s):

Sleep — Aim for at least eight hours of sleep each night.

Handle Stress — Tanzi recommends a short, one-minute meditation practice.

Interact With Others — Loneliness can lead to additional stress. Talking with friends and family members requires the brain to pay attention and builds new neural pathways.

Exercise — Walk at least three times a week for 30-45 minutes.

Learn New Things — “Leaning new skills can build new nerve connections that maintain optimal brain health. Try adopting a new hobby, learning a new language, or playing a new musical instrument.”

Diet — Drs. Oz and Tanzi recommend The Mediterranean diet. “On the diet, you’ll eat more fruits and vegetables, nuts and olive oil and then cut back on red meat consumption.”

There you have it.

New Drug to Help Alzheimer’s Patients? I Think Not!

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What are they thinking? How can the government approve a drug unlikely to improve the lives of any dementia patients?

I am not a doctor, but I have been around dementia patients my whole professional career as a nursing home and hospice chaplain. I also have been a co-caregiver for both my parents who died suffering from memory loss: Dad from Parkinson’s and strokes and Mom from Alzheimer’s.

I read about this new Alzheimer’s drug, Aduhelm, in newspapers and medical journals and was saddened by the recent approval of the drug. It was approved by the FDA even though there is no evidence it helps patients. An outside panel of experts voted against approval. Three of that panel’s members have now quit in protest.

What was the reason for them to recommend AGAINST approval? The patients in the clinical trial showed no improvement. Some did appear to have reduced amounts of amyloid clumps in the brain which are often found in Alzheimer’s patients. But less clumps in the brain have not been proven to lead to improved cognitive functioning.

The drug is extremely expensive for both the patient and Medicare, over $50,000 a year. Its use requires many PET scans, also extremely expensive. All this for a drug that shows no evidence of improving the life of the patient.

If you or someone you love has Alzheimer’s, don’t listen to me. Talk to your own doctor. But I suggest reading the criticisms about Aduhelm before making a decision on it.

Think of making this decision like you would with any other medical treatment. Do the benefits outweigh the burdens? In this case, there appears to be no benefit and quite significant burdens both financially and clinically.

Who can blame demented patients or their families for wanting to try something — anything — that might slow the losing of one’s mind? This drug is not one that offers such a promise.

Might the $50K be used for something that we know already helps patients or caregivers? What about respite care to give the family a break or in-home health aides? How about expanding Medicare coverage for palliative care for dementia patients?

Do these patients and families need hope? Absolutely! But not false hope. While the medical research continues, let us offer compassion and support to these patients and their families. May their burdens be eased by ways in which we already know the path.

“If I had a daughter, I wouldn’t be in this nursing home!”

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The old lady was stuck with three sons. And because of this — in her mind — she was stuck in a nursing home.

Her sons visited. They met with the nursing home staff to make sure their mother’s needs were met. They were as good of family caregivers as I had ever seen in my years as a nursing home chaplain. But, more than once, she said, “If I had a daughter, I wouldn’t be in this nursing home.” The notion seems a bit old-fashioned in today’s world, where gender equality is such an important issue.

Well, it turns out she might have been correct.

A study reported in the current issue of the Journal of the American Geriatrics Society (JAGS) found that a patient was more likely to die at home (as opposed to in a hospital or nursing home) if you had more family members… especially more daughters.

The burdens of a family caregiver

Being a family caregiver at home is a tremendous burden. In the JAGS study, the average number of caregiving hours in the last month of life provided by the family to someone who dies at home is 210. For those who die in a nursing home or hospice inpatient unit, it is 81.

Interestingly, the emotional burden for families is highest when the patient dies in a hospital and lowest when they die at home. Perhaps the transfer to the hospital in itself is a great emotional strain. Guilt about NOT being able to take care of the patient at home must also be a factor. And though providing hands-on care can be a physical burden, it may give the caregiver the self-satisfaction that they are doing their best. The caregiver feels more in control.

What about the daughters? Why does having daughters make it more likely to die at home? Unfortunately, the study did not tease out why, but we can guess.

Right or wrong, the cultural norm in our society is that nurturing and caring for the young and elderly are duties more often performed by women. Yet, I have witnessed so many men who admirably performed caregiving duties to their elderly parents that I know men can be great caregivers. But in these cases, the men usually stepped in because there were no women available.

Who’s going to take care of mother?

Hank’s mother, Charlotte, after her move to Colorado, with her namesake great-granddaughter, Lia Charlotte

I saw this “Who’s-going-take-care-of-mother?” question play out in my own family. Mom had lived for years independently in a retirement facility in Tampa before moving into assisted living. My brother, sister, and I took turns visiting our mother. I like to think we each took about the same amount of time away from our work and families to serve as long-distance caregivers.

As our mother’s dementia progressed, it became clear that we needed to move her to a facility closer to one of us. We each visited memory care units near our homes in Tallahassee, Boulder, and Northern Virginia. Each of us was willing and able to become “the caregiver.” We weighed the quality and cost of the facilities we had found.

After we all had done our due diligence, my sister declared, “I want to do this. I want mom to come to Colorado.”

I called Janice last week to see if my memory of this decision-making process was the same as hers. “Yes,” she said. “I knew you and Dennis were quite capable of caring for our mother, but I was her daughter. There is a special bond between mothers and their daughters.”

And that was that.

Could COVID Be the New “Old Man’s Friend”?

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Here’s the question: Should a nursing home resident with dementia get the COVID-19 vaccine?

There is no question that nursing home residents are at a high risk of dying should they get the coronavirus. That also goes for the underpaid and overworked staff who care for these vulnerable patients. One might think, “Of course, vaccinate them all.”

Not so fast.

I started thinking about this after reading a recent article from the bioethics think tank The Hastings Center, “Too Taboo to Contemplate? Refusing COVID Vaccination for Some People with Dementia.”

Just a month ago I wrote a blog post, “Making End-of-Life Decisions for Dementia Patients.” In it I wrote, “Here’s the question families of dementia patients face as they consider end-of-life decisions: Shall we save his life so he can become more demented and slowly decline further or shall we let him die peacefully?

Dena Davis, J.D., Ph.D., takes a similar approach in her Hastings Center article. She states the obvious: that if a person had declared in an advance directive that in the case of advanced dementia, they would refuse vaccines for flu or pneumonia, then that would also apply for COVID-19 vaccine. But, what of the patient who does not have a written advance directive or has failed to give such specific verbal directions?

Dr. Davis refers to several surveys where people expressed their preference to die sooner rather than spiral down with dementia. In one survey, more than half of the respondents were either “very unwilling” or “would rather die” than live in a nursing home. In another study of seriously ill but cognitively competent people a majority believed that either incontinence or “being confused all the time” were states equal to or worse than death.

We hardly need a scientific study to convince us that losing our minds and being totally dependent on others is a state almost all of us want to avoid. Now, a novel coronavirus comes along that is especially hard on elderly nursing home patients. It is also hard on the caregivers and vaccinating patients is partly to protect these folks and their families.

I agree with Davis’s personal preference that if she had dementia and was confined to a nursing home, she would give her surrogates instructions to withhold vaccines. Me too.

Once, pneumonia was thought of as “the old man’s friend” – a relatively peaceful way for the elderly to die, a welcome visitor. Dr. Davis speculates, “Could the novel coronavirus be today’s old man’s friend?”

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