Compassionate, informed advice about healthcare decision making

Archive for the ‘Withdrawing Life Support’ Category

Race and the Place of Death of Our Choosing

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If you had a choice, where would you want to die? At home? In a hospital ICU? In a hospice in-patient unit?

It has only been recently that more people have died at home than in the hospital. I used to discourage death in the hospital. As a nursing home and hospice chaplain, I cared for hundreds of patients in non-hospital settings. It seemed to me that dying outside the hospital was the better way to go.

Photo by Alvin Leopold on Unsplash

When I was writing the third edition of my book, Hard Choices for Loving People, I included a section strongly discouraging people from going to the hospital to die. I sent a draft to Dr. Christina Puchalski, who leads the George Washington Institute for Spirituality and Health.

Dr. Puchalski is a pioneer in encouraging physicians to assess patients’ spiritual resources. She also was in active practice at the time, caring for patients in a Washington D.C. clinic. Many of her patients were African Americans with limited income.

She read my draft and saw through my attempt to manipulate readers. “Hank, many of my patients and their families feel more comfortable dying in the hospital,” she told me. “It is very common for people in the neighborhoods I serve to want to go to the hospital in the end.”

So, I modified that section. I listed all the possible downsides to hospitalization but acknowledged some would still prefer to go to a hospital.

A rural physician taught me a lesson

About that same time, I started traveling around the country making presentations to healthcare professionals. My most popular talk, “Helping Patients and Families with End-of-Life Decisions,” includes a series of slides with “Hank’s Theorems” on various end-of-life issues. The first slide says, “The peacefulness of a death is directly proportional to the distance from the hospital ICU.”

I was speaking at a resort in Button Bay, Vermont. A woman came up to me after my lecture and said she took issue with that slide. “I am an ICU doctor in a small rural hospital here in Vermont, and we do not have a lot of resources. We use our ICU as an in-patient hospice and have a lot of peaceful deaths there.”

Now when I show this slide, I also share this physician’s feedback. I clarify that it is the death hooked up to machines with medical staff beating on our chest that many of us want to avoid.

“Fighting to the end” or a “peaceful death”

But what about the people who want to “fight to the very end”? The ones who really do NOT want a peaceful death? Perhaps, aggressive interventions and a medicalized, violent end are their true desires. Then again, many families whose loved ones died in the ICU wish it hadn’t happened that way. They regret that their mom or dad did not have a more peaceful death.

Photo by Sharon McCutcheon on Unsplash

So, here are two extremes of what death could look like: Being hooked up to machines in the ICU or choosing comfort measures only in a non-hospital setting. An article in the Journal of the American Medical Association (JAMA)Network Open and its accompanying commentary investigated this recently.

The research looked at metastatic cancer patients who died in a hospital. Some died in the ICU or had other more aggressive treatments like mechanical ventilation, CPR, or chemotherapy before they died. Others never had these interventions. There was a curious breakdown based on race.

Black, Hispanic, and Asian patients were much more likely to have aggressive interventions before death than White patients. This research could not answer why this was the case. The commentary in JAMA speculated that perhaps it could be due to the informed decisions of the minority patients or their families.

I have cared for patients and their families who did not want the death at home. They didn’t want to face the thought of living in the house where the dead had lain. Or the patient did not want to create an extra burden for the family, which can be so common in the last days. The hospital was the best place for them to reach their goals.

Either way, the hope is that people can have the death of their choosing.

My Life At 100

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I made it to one hundred! 100. The Big One-Oh-Oh.

This is my 100th blog post. It took a while. I started blogging in 2011 and made six blog posts that year. For the first nine years, I only published 51.

From my very first blog post, May 11, 2011: “How to start a blog about end-of-life decisions? I have been professionally dealing with these issues for 27 years.… One thing for certain . . . the fact that patients and families often struggle with decisions about medical treatment at the end of life will not go away.”

(BTW, shout out to Kelly Brachle, of Quality of Life Publishing Co., who edits my ramblings into a coherent thought. And while I am shouting out, nothing leaves our home without the approval of my wife as she stands in for the “average reader” [when I showed her this post, she reminded me she is “above average”]. More than once, her suggestions have saved me some embarrassment.)

It’s all about the stories — family, friends, wilderness

Although I often stick to the theme of making end-of-life decisions, other topics get some attention. I share my own family’s experience with death and dying, like with my mom’s decline and death in “How did your mom feel about her dementia?” Grief is a repeated theme, like my recent post on the funeral ritual for my brother 42 years after he died.

I really try to tell stories, like the post about my friend who died with dementia. I wrote about our friendship since junior high and how we fished together in the years before his death. Occasionally, I share my adventures in the wilderness, like the one about my love of swamps.

I have been writing my whole adult life – before the days of the blog. A few of those older writings made it into the collection. I reprinted a story about riding my bicycle the length of the Outer Banks from a 1993 newsletter published by the nursing home where I was chaplain. For several years following a difficult time in my life, I sent letters (essays, really) to family and friends. In a 2014 post, I shared a piece I did in 1998 about my friend, mentor, and author, Elizabeth O’Connor.

Writing and videos for short attention spans

We have become a people with short attention spans, so I try to limit each post to about 500 words. I have even ventured into producing two-minute videos on various topics. Sometimes I’ll tell the same story in both formats. I did a blog about the lesson my father taught me about letting go in the blog “How to get to ‘It doesn’t Matter!’” I then did a YouTube video about the same story.

By the way, you can subscribe to my YouTube channel and look through my “Hank’s Deep Thoughts” playlist.

I have found that writing for others helps me think things through. I can clarify thoughts in my mind when I have to explain things in a way others can understand. So even if no one else reads these, I will keep on writing these blog posts.

Oops! I just passed 500 words. Bye!

“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.

Don’t Say of Me, “He fought to the bitter end!”

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“Dad was a fighter. We never gave up on him!” they said to each other.

For me, it was one of the saddest scenes I had witnessed since I started working as a chaplain in 1983.

I must emphasize that my interpretation of this scene as being sad is my opinion. This entry is about how I want to be treated in the end…or not treated as the case may be.

Others do want to “fight to the very end” and I can support that. But this case seemed beyond all reason. You can decide for yourself.

On this particular day, I was in the emergency department waiting room with the family of one our nursing home residents who had been rushed to the hospital. The patient was riddled with cancer, literally. He had tumors breaking his skin in multiple places. His body was wasted.

Earlier at the nursing home, I sat with the wife outside the patient’s room while the paramedics were beating on the man’s chest. One EMT compassionately knelt by this woman to tell her that they did not have a pulse on her husband, but they were going to continue CPR and take him to the hospital. He said he was not hopeful that they could save the man’s life. He did an admirable job of breaking bad news.

When the ER doc came out to tell the family that they were unable to revive him they said to each other, “Dad was a fighter. We never gave up on him!”

Fighting battles

This story has so many things to unpack. Ethics. Compassion. Autonomy. “First, do no harm.” Surrogate decision-making. Moral distress of the professionals. Not to mention the patient’s adult children were not speaking to his wife, their stepmother. But I’ll focus now on the language of fighting to the bitter end.

“Keeping Away Death,” sculpture by Julian Hoke Harris, located near Grady Hospital in Atlanta.

We see it often in obituaries, “John died after a long battle with cancer.”

I’m sorry. In my view, this language makes John a loser. What a horrible thing to say about him. Everybody dies. In framing death as a battle lost, we ALL will be losers when it comes to the last act of our lives.

What does this say to the millions of us who read these words and feel ashamed when we have a disease which we know will kill us? We can only conclude, “It’s my fault I am dying.”

Did I allow too much stress to cause me to get sick? Did I not try hard enough? Did I lack faith?

Let me be clear. At this point in my life, if I get a fairly treatable cancer with a good prognosis, I will “fight” it, if you must use that language. I just do not like the battle metaphor when your enemy is death. Death is part of life not its enemy.

“He died peacefully…”

What got me thinking about this is a book I listened to recently as I drove from Oxford, Mississippi to Northern Virginia. Actually, it was two short books in one audio program — Susan Sontag’s Illness as Metaphor (1978) and AIDS and its Metaphors (1988).

What Sontag only barely mentioned in the more recent book was that she was being successfully treated for breast cancer when writing the earlier one and later “fought” and “defeated” uterine cancer. She finally died fighting a rare and very aggressive form of leukemia in 2004. And fight she did.

Her son, David Rieff, wrote a very moving memoir (Swimming in a Sea of Death) about what it is like for a family member to try to support a patient who was dragging herself through a painful dying in the false hope she would be cured.

If you must mention a cause of death in my obituary say, “He died peacefully while living with cancer” or “He died peacefully after months with palliative care and hospice.” Or, better still, “He didn’t give up, he let go and just let things be.”

“Grey’s Anatomy” and CPR on Television

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True confession: I have joined my 22-year-old daughter in binge-watching Grey’s Anatomy during the pandemic. Over 300 episodes viewed and counting. I now know about “10-blade,” “clear!” and the importance of declaring “time of death.” Also, I never knew there was so much romance and sex going on in hospital supply closets and on-call sleeping rooms. Now I know.

Grey’s Anatomy (currently in its seventeenth season) follows Dr. Meredith Grey and her fellow surgeons at a Seattle teaching hospital. She started out as a young, single intern and is now a widowed mother of three small children as well as the chief of general surgery. The show is very engaging, depicting extremely dedicated and hard-working doctors. Most are compassionate, empathetic and caring.

CPR is on TV…but it is not realistic

 A staple of medical dramas is the “code.” A heart monitor starts beeping loudly, a doctor starts chest compressions, another grabs the paddles of a defibrillator and yells, “Clear!” Sometimes the first shock gets the heart back in rhythm but most often it takes a couple.

While it seems like all of the cardiac arrests on Grey’s are with a “shockable rhythm.” In real life only about 10% of cardiac arrests are shockable. Medical journals have exposed the unrealistic depiction of CPR on medical dramas.

Why dedicate medical research to the topic? The general public develops a distorted view of the success of the procedure. In 1996, the New England Journal of Medicine looked at CPR on Rescue 911, Chicago Hope and E.R. and found survival rates vastly higher than the actual 17%. On Rescue 911, 100% of those receiving CPR survived.

In 2015 the journal Resuscitation calculated the CPR survival-to-discharge success rate at 50% for House and Grey’s Anatomy. That doesn’t happen in real life. But if 83% of the CPR patients died on TV, not many people would watch it and the sponsors would probably complain.

I have written before about the futility of CPR for large categories of patients. In the years between the fifth (2009) and sixth (2016) editions of Hard Choices for Loving People, the survival rate inched up from 15% to 17%. It is not that the procedure has gotten better. The clinicians are getting better at advising patients and families about who will NOT benefit from CPR. Survival rates have improved because we are doing LESS CPR.

DNR is a big deal

Occasionally on Grey’s, the characters discuss “code status” — whether a patient should have a Do Not Resuscitate (DNR) order. (See my blog on my preference for AND — Allow Natural Death.)

On the show, it’s the patient who is often ready for the docs to write the order so they can have a peaceful death. The family — or even the physicians — sometimes resist. In my experience, this is very realistic. Real-life patients usually come to the conclusion that they are dying before their families or doctors. Their own bodies tell them it is time. This is information others do not have.

The DNR is a big deal. It serves as a sign that it is time to prepare for a comfortable and dignified death. And, on this, I do give Grey’s credit for getting it right.

Living Wills and Advance Care Planning are Wrong. What?

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“Living wills and advance care planning are wrong.” What?

Yeah. I thought that, too. Who could be against living wills? How could planning ahead for possible future medical decisions be wrong? These doubts about the value of living wills came from the GeriPal podcast, “Advance Care Planning is Wrong: Podcast with Sean Morrison.”

Part of Morrison’s beef with these well-established practices for end-of-life care is the amount of research dollars continuing to be poured into “improving” them. Dr. Morrison and his hosts on the podcast are practicing physicians who also conduct research into how to improve medical care at the end of life. He would prefer that some of those limited research funds be channeled into improving other aspects of the end-of-life medical experience.

A healthcare proxy is a good thing.

He does say naming a “healthcare proxy” (a person you designate to speak for you if you can’t speak for yourself) is a good thing. But even that is often fraught with difficulties, like people never talking to their proxy about what their wishes are for things like life-prolonging procedures. Or, worse yet, not even telling the person they are named in their documents.

What could be wrong with a living will, you ask? Living wills are often prepared years before they are needed to help guide a medical treatment decision. We are not the same person we were twenty years ago when we wrote down our wishes. We may have changed our views.

I once had a nursing home patient who had a feeding tube. His eyes could track you around the room, but he could not talk. He soon became nonresponsive and his body began to swell and retain fluids. His wife said to me, in passing, “I guess it is time to get out his living will.” YES, please.

When he was healthy, he always told his wife, “If I am dying, I don’t want anything artificial keeping me alive.” Yet when he was faced with the possibility of dying, he said “yes” to the feeding tube. There is nothing wrong with his decision. If you have the capacity, you have every right to change your mind.

Update your family in light of your current values

The doctors on the podcast found that a decision made years earlier might be different when confronted with a specific medical situation today. What they found more helpful in the medical record is a note about what the patient expressed in conversation with their physician. What was the patient’s motivation for saying, “I don’t want life-prolonging procedures?” Things like “I value quality of life over quantity” or “I just want to see my daughter married in June.” What these docs are looking for is what values their patients have.

My takeaway from the podcast: Have conversations with my family revisiting my wishes about the end of my life. Update them in light of my current values and my current medical prognosis. COVID-19 is a perfect example of why a living will prepared years before might not help. I have changed my instructions to my wife twice in the last several months based on new research regarding the progression of the disease.

So, you might have to ruin another Thanksgiving dinner. I can hear your family, “Oh, Mom. Do we have to talk about that again this year?” Soldier on. Keep updating your feelings and wishes.

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.”

We Didn’t Want to Put Him Through That Again

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I just got off the phone with the widow of an old friend of mine. She called to let me know her husband died last week. I hadn’t heard. He was 70. Alzheimer’s.

I’m not sure he knew me

I last saw him in October on my way to a speaking engagement near Orlando. This was the week before he entered a memory care unit. I’m not sure he knew me. He told stories and laughed like he always did but his words made no sense.

We had grown up in the same neighborhood and I followed him three years behind to the University of Florida. He played baseball, me football. He went into law, me the ministry. Over the years I would stop by and we would go fishing. He loved to fish the lakes.

His wife told me he died from aspiration pneumonia. A very typical way for advanced dementia patients to go. They get food or fluid in their lungs and an infection follows. Often these patients are treated with antibiotics and the pneumonia is cleared up. Then the decline of the patient continues and they get pneumonia again, etc., etc.

“We didn’t want to put him through that again.”

They refused antibiotics and called hospice. She told me he died the most peaceful death.

Around Christmas he had gone into the hospital and “it was a horrible experience.” “We didn’t want to put him through that again.” They didn’t.

I told her she did the right thing. I said, “It is so routine to put the people in the hospital, pump antibiotics into them and they are saved only to get worse. I cannot say enough good things about how you handled this. It is so out of the norm but in my view the best of care.”

Hank

 

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Doctors Choose LESS Treatment When Dying

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Here is a great article from 3 years ago about physicians choosing less aggressive treatments as they are dying than does the general public.

http://www.wsj.com/articles/SB10001424052970203918304577243321242833962#

Hank

Photo by Online Marketing on Unsplash

Nelson Mandela and the End of Life

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My friend Connie Holden has written a great piece for the Boulder, Colorado newspaper the Daily Camera. In “Mandela: A Second Prison Sentence?” she reflects on the last months of Nelson Mandela’s life and encourages the readers to consider how they would like to spend their last days. Connie is an oncology nurse, former director of a hospice program, and now the co-founder of The Conversation Project in Boulder County. Thanks, Connie!

 

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