Compassionate, informed advice about healthcare decision making

Archive for the ‘Artificial Feeding Tubes’ 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.

You Can Never Make a Wrong Decision

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“I made a mistake. I made the wrong decision,” the wife of the recently deceased man said.

Several years ago, I spoke at the Centra Hospital in Lynchburg, Virginia. There were about 50 people in the room, including members of the clergy, physicians, nurses, social workers, and just plain folks. I divided my presentation, the first half devoted to helping patients and families make end-of-life decisions, and the second half to the emotional and spiritual issues at the end of life.

When I invited the audience to speak, a lady raised her hand and told her friend’s story. Her friend’s husband had been in a nursing home and on a feeding tube. He was not considered to have the capacity to make his own medical decisions, so all the medical treatment decisions rested on his wife.

On more than one occasion, the patient pulled out the feeding tube. This lady suggested to her friend that perhaps her husband was saying he did not want the feeding tube. Her friend always responded, “He doesn’t know what he is doing.” They always reinserted the tube and resumed the feedings.

“I should have left the tube out and let him die sooner.”

About six months after the patient died, the lady visited her friend. The now-widow said, “I made a mistake. I made the wrong decision. I should have left the tube out and let him die sooner.”

At times, I have heard other family caregivers express similar regrets about decisions made. “We shouldn’t have sent mom back to the ICU.” “I wish we had never started the feeding tube.” “We kept the chemo going way too long.”

You can never make the wrong decision

When I hear remorse like this, I always tell people, “You can never make the wrong decision. You make the best decision you can with the information you have at the time.” In my 28 years of being close to decision-makers, I have never thought someone made a decision intending to harm a patient. People always want the best for the patient. It is only in looking back that they say a decision was a mistake.

I even say “you can’t make a wrong decision” to people in the throes of a decision-making process. I hope to ease the burden they are placing on themselves. These choices can be hard enough. I want to assure these burdened families they can’t make the wrong decision. You just do the best you can with the information you have at the time.

[A version of this blog post appeared in 2011.]

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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.

Photo by Nik Shuliahin on Unsplash

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.

 

“She would never want to be kept alive like this.” The Benefits of Time-Limited Trials

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The conversation started innocently enough. It was thirty years ago (in an age before cell phones) at the nursing home where I served as chaplain. The sister of one of our patients needed to use a phone. The Assistant Director of Nursing invited her into the office down the hall from the patient’s room. The frail old lady hung up the phone when she got a busy signal (this was also before call waiting and voicemail).

In the quiet, while she waited before dialing again, she told the nursing supervisor, with great sadness, “My sister would never want to be kept alive like this.” “Like this” meant in a nursing home, on a feeding tube, and nonresponsive. The wise and compassionate Assistant Director of Nursing responded, “You know, you can stop the tube feedings if you feel that would have been her wish.”

Over the next days, the patient’s sisters and son met with the doctor and our nursing home care team. The family decided to withdraw the feeding tube and let the patient have a peaceful and natural death — and so it was. But this painful decision – and the patient’s slow, prolonged death – could have been avoided.

It could have been done differently

The lady had a stroke, was unconscious, and couldn’t swallow. The hospital physician said she needed a feeding tube and that was that. What if that doctor had said, “We can try the tube feedings for a little while, say thirty days, and if she doesn’t improve, we can stop the artificial feeding and let her die peacefully.” So much suffering could have been avoided if a “time-limited trial” of the feeding tube had been offered to the family.

My mind went back to this experience after recently reading a great piece by Paula Span in The New York Times, “I Need to Know I Tried” in her ongoing series “The New Old Age.” Reporting on a research study conducted in Los Angeles, she explains how time-limited trials offered to families of critically ill I.C.U. patients had many benefits. The length of stay in the I.C.U. was shortened, fewer patients had prolonged deaths, and the families felt better about their decision-making.

This new research confirms what I have known all along. In my view, there is no downside to a time-limited trial.

Making End-of-Life Decisions for Dementia Patients

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“We didn’t want to put him through that again,” she told me. I wrote previously about my childhood friend eventually dying with dementia after years of decline. His wife decided not to send him back to the hospital.

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? I have been thinking about end-of-life decisions for dementia patients because I just was interviewed for a podcast that focuses on helping family caregivers of these patients. Listen to “Rodger That” for my interview and scores of others.

With almost four million copies of my book Hard Choices for Loving People in circulation, I’m pleased to say I’ve received very few negative comments about the book. One person did push back against my characterizing dementia, like Alzheimer’s, as a terminal disease. People don’t die from dementia, they die from other conditions like pneumonia, they said.

Dementia IS a terminal disease

In my view, dementia has all the earmarks of a terminal disease. The patient declines over many years. The general trajectory is downhill although they may recover temporarily from some setbacks. Had they not had dementia they probably would have lived longer. The end is always in death. Sounds pretty terminal to me.

Me and my mother at a memory care facility the year before she died.

As with any end-of-life decision, trying to discern what the patient would have chosen is paramount. Consider this question the physician asked me and my sister after mom fractured her hip in the memory care facility, “How did your mom feel about her dementia?” He didn’t ask whether or not she would want hip surgery. Mom hated, hated, hated losing her mind. It was clear our goal was just to keep her comfortable.

I would venture that everyone fears ending up living their last years where you do not know your family members, are incontinent, and are dependent on others for dressing, eating and toileting. Who wants this?

Then why, oh why would a family decide to save the life of a patient in this condition when they could have opted for comfort care and allow a natural, peaceful death? I think most of us would choose an earlier exit from such a fate.

My mother’s doctor helped clarify this for us with his pointed question. We said, “No. Mom would not want any treatment that would extend her life.”

Letting go and letting be

A word of encouragement to those who may face making decisions for a demented patient: I have found, in general, families are able to get to a place to allow a peaceful death at the right time. The truth is the patient has been dying bit by bit for years. These families have been grieving the loss of all the pieces that make up the person they love — their memory, their health, their expressions of love, and so much more.

When it comes time to say, “Let them go peacefully,” it is just the next step because they have been letting go all along. It is time to just let things be.

You Can’t Get What You Want

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I changed my mind. Since 1990 I had a question to help people make decisions about end-of-life medical treatments. 3.6 million copies and six editions of my Hard Choices for Loving People book have included this question I am now changing.

One essay in a medical journal convinced me in an instant. I read it and it rang true. Dr. Margaret L Schwarze, et. al. wrote “You Can’t Get What You Want: Innovation for End-of-Life Communication in the Intensive Care Unit.” I just recently found this piece from January 2016.

The question I am changing is used so much by doctors, nurses, chaplains and social workers it is almost reflexive. Say you have a demented 85-year-old patient in a nursing home and the family is having to decide about CPR. After explaining the options and prognosis the doctor may then ask, “What would your mother want?” We in healthcare ask this all the time.

We have been well-meaning all these years. We are trying to get the opinion of a patient who can no longer give an opinion. We are being advocates for patient autonomy through the substituted judgement of a family member. The essay authors see several problems with this question.

Several problems with this question

“First, it encourages the family to reflect on treatments, like life support or comfort care, rather than goals.” I am reminded of the doc who cared for my mother. Her dementia had been advancing for years and then she fell and broke her hip. His question to my sister and me was, “How did your mother feel about her dementia?” In many words we told him she hated it and he said, “Okay, here is what we are going to do.” He never asked what treatment plan she would want. He wanted to know how she felt about her underlying condition.

The essay continues with the flaws in the “want” question. “Second, it can shut down discussion; once the family makes a choice, what else is there to say?” The family of the 85-year-old may respond, “Mom loved life. She wants to live. Do everything to keep her alive.” Does she want to live on a machine for weeks or months? Would she want to live not knowing her family? What about the pain and suffering aggressive medical care can inflict? The “want” question cut off this discussion of the patient’s values.

“Third, want is aspirational and evokes fantasies. When we ask patients or their surrogates what they want, we release the constraints of the decision-making context and allow consideration of possibilities outside the boundaries of clinical reality.” A healthcare professional has perhaps seen hundreds of patients like the one where a family is now making a decision about life-prolonging procedures. The docs and nurses know the almost certain disability and/or death awaiting this patient. The family dreams of wanting mom back to how she was before. It’s not happening no matter what is done in most cases.

So, what do we ask if not “what would your mother want?”

Since the first edition of Hard Choices in 1990 I have included “What does the patient want?” as one of five questions to ask as an aid to making end-of-life decisions. Here is what I am changing it to with the next printing:

  1. What does the patient think about their current and probable future condition? A patient with decision-making capacity can speak for themselves. If they are unable to express an opinion then try to imagine how they would think about the state they find themselves in. If the likely outcome of further life-prolonging procedures would lead to increasing disability and/or greater mental decline, what would they say about that? The purpose of this question is to try and imagine what the patient values most.

 

This is a more open and honest discussion of the patient’s values rather than a yes or no about a particular treatment. The family can inform the medical staff about what the patient felt was important. Hopefully, the staff can draw up a treatment plan that affirms those values and is realistic about what further treatment can and cannot accomplish.

In the summer of 1968, as a college student, I did ministry work on the streets of Newark, New Jersey a year after the city had been engulfed in riots. My mentor, Bill Iverson, encouraged us to follow Socrates and ask people questions instead of trying to preach at them. He had a great saying which applies here.

“Ask people the right question and they will give you the right answer.”

Feeding Tubes: Guantanamo NO; Our Parents OK

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Here is a great piece that was in the New York Times yesterday. It powerfully tells the truth that feeding tubes for advanced dementia patients cause more pain with no benefit.

http://www.nytimes.com/2015/11/24/opinion/force-feeding-cruel-at-guantanamo-but-ok-for-our-parents.html?smprod=nytcore-iphone&smid=nytcore-iphone-share

Photo by Ye Jinghan on Unsplash

Choosing Wisely . . . Once Again No Feeding Tube

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What five things can physician groups agree will not help and may harm patients?

This is the question posed to physician professional organizations in an effort to help patients avoid harm. Twenty-six medical groups, from the American Academy of Allergy, Asthma & Immunology to The Society of Thoracic Surgeons, polled their members and came up with a list for each specialty. Interestingly, two different groups listed the same treatment at the top of what is to be avoided. These lists were just published last month.

Feeding tubes … the number one treatment to avoid

Both the American Geriatrics Society and American Academy of Hospice and Palliative Medicine ranked feeding tubes in advanced dementia patients as the number one treatment to avoid. Specifically, number one of both lists is, “Don’t recommend percutaneous [through the skin] feeding tubes in patients with advanced dementia; instead, offer oral assisted feeding.”

I have blogged about this before. The research is clear. For patients with advanced dementia, like end-stage Alzheimer’s, feeding tubes offer no benefits and increase the burden of living.

Often, these patients have increased difficulty eating as the disease progresses. The quantity of food they take in declines and they lose weight. They can choke and get food in their lungs that can possibly turn into aspiration pneumonia. These problems are common at the end of a long decline in this sad disease process.

Mistakenly, some medical professionals recommend a feeding tube when these expected eating difficulties arise. They might say, “Your mom is having eating difficulties and we are worried that she is going to lose weight and maybe get pneumonia. We recommend putting in a feeding tube to prevent these things from happening.” THIS IS NOT TRUE! They may even say, “You can’t let your mother starve to death. Let us put in the feeding tube.” DON’T BELIEVE THEM! There is nothing in medical research to back up what they are telling you.

Feeding tubes may be very helpful to others

I want to emphasize that what I am talking about here applies to dementia patients. Feeding tubes may be very helpful to others like some stroke patients or survivors of throat cancer. Consult with your physician to see if this research on advanced dementia and feeding tubes applies to your case.

Tube-fed advanced dementia patients do not live longer than carefully hand-fed patients. I used to tell families that putting in the feeding tube only prolonged the dying process. I WAS WRONG! In one study a group of surgeons assessed 41 advanced dementia patients who were experiencing eating difficulties. All 41 met the criteria that have, in the past, led to a recommendation for the insertion of a feeding tube. The tube was refused by 18 families. Both groups (tube-fed and hand-fed), on average, died within about the same amount of time. Putting in a feeding tube did not add one day to the life of these patients but made them more uncomfortable and actually might have caused them harm.

Tube feeding does not reduce the risk of aspiration pneumonia. In fact, some studies show that it increases the risk. These patients can be fed orally with careful hand feeding. It takes skill, time, and patience, but it can be done.

Interestingly, there is a wide difference in this country in the frequency of use of feeding tubes for severely demented patients. On average, 21% of advanced dementia patients in the United States have a feeding tube. But look at the different rates of use:

On the low side:

  • Wyoming only 4% use.
  • Montana, New Hampshire, and Maine all have 5% use.

On the high side:

  • Alabama has 34% use of feeding tubes for advanced dementia patients.
  • Hawaii has 36%.
  • The District of Columbia has 45% use.

How do you explain such wide use of a treatment known to offer no benefits and cause harm to the patients who get them? I say these tubes are put in for cultural, emotional, and spiritual reasons. It cannot be for medical reasons. In places where use of feeding tubes is high you may be going against the cultural norms to refuse the feeding tube. Hopefully, we can get the word out there to be compassionate to these patients in their last months and feed them by hand.

Hank Dunn

Feeling Guilty Over NOT Inserting a Feeding Tube? Please Don’t

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Is failing to put a feeding tube in a dying Alzheimer’s patient starving her to death?

The short answer is no.

That basically was the question posed to me by the daughter of one such patient two months ago. Her mother had died four weeks earlier. She had read my book Hard Choices for Loving People for the first time seven years ago. That was four years after her mom had been diagnosed with Alzheimer’s Disease. So, for eleven years her mother was on that long, slow decline toward her final days. Her death came after a stay in the hospital when the family agreed with the physician’s recommendation to provide comfort care only and not insert a feeding tube.

In the months leading up to the hospitalization this daughter spent five to six hours every day at the nursing home helping with her mother’s care. Most telling for me, it sometimes took two hours to feed her mother. This is so common for the end of dementia patients like this mother. They choke and cough in an effort to clear their airway. Occasionally, these eating difficulties lead to pneumonia. Finally, these patients just lose the ability to swallow.

As difficult as it can be, studies have shown that these hard-to-feed patients can be successfully and safely fed. Even so, when all efforts at careful hand feeding fail, it is a sign that the last days of a patient’s life have arrived.

Feeding tubes do not add one day to the patients lifespan

The daughter went on in her e-mail to me: “Since that time [of her death], I have felt extremely guilty. All my sisters still feel we did the right thing by following the wishes Mama expressed in her living will, but I struggled, and still struggle, as the living will she signed was 14 years ago. Mama may not have lived very long if she had a feeding tube but, then again, it may have given her years of life since I was with her so much of the time to ensure she got good care.”

I know this is hard but the research is clear. Feeding tubes do not add one day to the lifespan of advanced dementia patients like this mother. From all I can tell from this correspondence this patient did get good care. Comfort care, palliative care, and hospice care are quite appropriate for advanced dementia patients. Give them ice chips or sponge swabs dipped in water to quench their thirst. Give them a loving touch and spiritual support. There are a great many measures we can do to ease the suffering of an Alzheimer’s patient’s last days. Inserting a feeding tube is not one of them.

Photo by Ben White, Unsplash 

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