CPR | Hank Dunn

Compassionate, informed advice about healthcare decision making

Archive for the ‘CPR’ Category

Words Matter: “Want” and “Need”

Posted August 3, 2023 by [email protected]

The ethics committee turned to me, “Chaplain Dunn, we will have you talk to all the patients and families about ‘No CPR’ orders and advance directives.” I was just six months into a part-time chaplain’s position for which I had no training. The arc of my career was set for the next forty years in this one assignment.

Four decades later, I am still learning our words matter.

“Need” implies you have no choice

I read a recent JAMA Online article titled “Reconsidering the Language of Serious Illness,” which illustrates that when healthcare professionals use the word “need,” aggressive treatment is often the result. Example statements from the article:

“If her breathing gets any worse, she will need to be intubated.”
“He needs a central line, a special IV catheter in his neck, so we can give him blood pressure medicines.”
“If she doesn’t make any urine soon, she will need dialysis.”
“If she can’t be extubated soon, she will need a trach.”

The article’s authors argue that once you say the word “need,” it implies that the family has no choice but to proceed with the treatment. Who would deny their mother what she NEEDS?

“To need is to lack something essential”

From the article: “To need is to lack something essential. As clinicians, we regularly use the word need to think about and describe the condition of patients with acute serious illness. These patients lack something essential for survival, and clinicians have the technologies and therapies to sustain their lives. So need rolls off our tongues as a shorthand to convey our clinical assessments of patients with acute life-threatening illness.”

Their suggestion for changing the language: “When a patient is facing a life-threatening illness, instead of saying she ‘needs to be intubated,’ we suggest that clinicians say, ‘Her illness is getting worse. I would like to talk with you about what this means and what to do next.’”

This language change opens the conversation up to more options than just “the need to be intubated.” What does the patient think about their current situation? What are her preferences about being kept alive on a machine? What are her chances that she will ever get off the vent? Intubation is one possible choice, but others are equally possible, including shifting the focus from cure to comfort.

Changing “What does the patient WANT?” to “What does the patient THINK…”

Six years ago, I made a significant change in the language in one sentence in my Hard Choices for Loving People book. Once again, a medical journal article convinced me to change a question I had used for almost three decades. I wrote about this in a previous blog, “You Can’t Get What You 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. In 2017, I changed it to: “What does the patient think about their current and probable future condition?”

A career using language to help with end-of-life decisions

Soon after I became a part-time nursing home chaplain in 1983, our administration formed an ethics committee. Virginia had just passed a “Natural Death Act,” which gave patients a right in the code to refuse treatment and provided a form (e.g., “living will”) to express their treatment preferences.

The committee included the director of nursing, the medical director, a lawyer, an administrator, and me. In response to the new law, our plan was to inform all patients and their families about advance directives and the option of a “No CPR” order. But who would deliver the information?

The committee turned to me, “Chaplain Dunn, we will have you talk to all the patients and families about ‘No CPR’ orders and advance directives.” I had no healthcare experience and had yet to take basic chaplain training. So, I learned how to talk to patients and families…by talking to patients and families

Over the next year, we went from less than 10% of our patients having an advance directive and/or “No CPR” order to over 80%. And I learned the importance of using my words to help the process along.

We published the first edition of Hard Choices for Loving People seven years later.

[Cover Photo by Kampus Production via Pexels]

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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

Posted October 12, 2022 by [email protected]

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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Being Sued for SAVING the Life of a Patient

Posted June 24, 2022 by [email protected]

“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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Race and the Place of Death of Our Choosing

Posted November 3, 2021 by [email protected]

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.

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

Posted March 16, 2021 by [email protected]

“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.”

Making End-of-Life Decisions for Dementia Patients

Posted March 3, 2021 by [email protected]

“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.

“Grey’s Anatomy” and CPR on Television

Posted December 9, 2020 by [email protected]

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.

You Can’t Get What You Want

Posted August 28, 2017 by bjs

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:

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.”

Doctors Choose LESS Treatment When Dying

Posted January 5, 2015 by kbrachle

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

Videos of Your Future with Advanced Illness

Posted June 24, 2013 by kbrachle

What if every person with advanced illness could see a video of what their future would look like? Say, a video of CPR being administered and its aftermath of a breathing tube forcing air down a patient’s throat? Or an honest movie picturing what advanced dementia looks like?

If patients and families could see such a video, would it make a difference in the medical treatments they might choose or refuse as the disease progresses?

These questions are being answered and these videos are available right now.

A mission of producing realistic videos of advanced illness

Last week, NPR radio talk show host Diane Rehm hosted a program “Making Better End-of-Life Care Decisions.” Two of her guests were Drs. Angelo Volandes and Aretha Delight Davis, both of the Harvard Medical School. They have a mission of producing realistic videos of what advanced illness looks like and actual footage of treatments like feeding tubes and ventilators.

They have started Advance Care Planning Decisions (www.acpdecisions.org) to produce and distribute these videos. Go to their website to see a sample video and read the research.

The bottom line on the research is that when patients and/or their families see videos of actual treatments, they are more likely to refuse the treatment than if a physician just explains what the treatment is like. It is the old a-picture-is-worth-a-thousand-words adage.

The aftermath of some life-prolonging treatments

The Atlantic ran a great article on the whole video project, “How Not to Die” by Jonathan Rauch.

One of the things I like about what I see here is the depiction of the aftermath of some life-prolonging treatments. Take CPR, for example. Successful resuscitation attempts are rare. “Successful” being defined as “the patient did not die.” At best, the procedure is successful only about 15% of the time. What is hidden in the “successful” statistic is that half of those survivors have brain damage following the interruption of the blood flow to the brain. AND, what you see in the video, the patient is highly likely to be hooked up to a ventilator (breathing machine) after being resuscitated.

So the combination low survival rates, the likelihood of brain damage, and increased chance of being tethered to a machine cause many people to pause before telling the medical team to “do everything.” We now have videos to show what all the words have been trying to convey. What a great contribution of Drs. Volandes and Davis!