Compassionate, informed advice about healthcare decision making

Archive for the ‘Artificial Feeding Tubes’ Category

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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