Compassionate, informed advice about healthcare decision making

Archive for the ‘Withdrawing Life Support’ Category

How Come so Much Aggressive End-of-Life Care?

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The man was riddled with cancer. The paramedics continued CPR as they wheeled him out of his nursing home room. I drove his wife to the emergency room. This is what the family wanted, although I am not sure the patient would have chosen it. When the doc came to the waiting room to tell the family he died, they congratulated themselves on “trying everything.”

Sadly, aggressive care in the last days of life is all too common. Perhaps, my experience with this patient was an extreme example. Aggressive care can include an ICU stay, surgery, chemotherapy or radiotherapy. New research shows that about 60% of elderly Americans with metastatic cancer receive some sort of aggressive care in the last 30 days of life.

60% of elderly, advanced cancer patients receive aggressive life-saving attempts in the last month of life

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This research was recently published in JAMA Network Open and looked at the last 30 days in the lives of 146,329 people who were over 65 and had a diagnosis of metastatic cancer, in other words, very sick, frail elderly folks with an average age of 78.2 years.

I was put onto this research by a great article from Paula Span in the New York Times. She writes a regular piece called, “The New Old Age,” and this was one in her series. What is not clear from the research is “Why?” Why are so many, obviously dying old folks being dragged through more treatments which are normally reserved for those seeking cure?

Some may want this treatment, but I doubt it

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It is true that some of these aggressive treatments can be considered palliative, for example, radiation to reduce the size of a tumor and hopefully reduce pain. It is also true, that some of this aggressive treatment is actually what the patient wanted. Perhaps, they were made fully aware of their grave condition but chose treatment that had little chance of helping them. Both of these possibilities are probably in a small minority of this aggressive care.

Spirituality raises its head again

The JAMA study concluded, “The reasons for aggressive end-of-life care are multifactorial, including family involvement, religion and spirituality, patient preferences, patient-clinician communication, and health care delivery systems.” I would add, the default mode in our healthcare system is to do stuff, when faced with a problem. That “stuff” is usually doing more of the same rather than shifting to comfort care only.

My chaplain antennae always perk up when I see “religion and spirituality” mentioned in any medical journal article. I am back to my oft-repeated premise — for patients and families, end-of-life decisions are primarily emotional and spiritual. People need to learn when it is time to let go and just let things be.

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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.

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.

Being Sued for SAVING the Life of a Patient

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

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

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

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

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

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

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

“Watching” the Super Bowl on Life Support

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“I know he would never want to be kept alive like this,” she said to me over the sound of a machine forcing air into her husband’s lungs. He lay motionless, eyes closed. He had been like this for months after arriving at the nursing home from the hospital.

She was holding out for the miracle that seemed unlikely. She was raised Catholic but converted to Judaism when they married some forty years before. One day I came into the room on my chaplain rounds, and she had both a Jewish prayer book and a Rosary in her hands. She figured it couldn’t hurt covering all the bases.

“Why is he like this?” she asked more than once, about him being in a nonresponsive state. Doctors told her he would never regain consciousness. “There must be a reason.”

When bad things happen to good people

Since she was Jewish and asked this question, I gave her a copy of Rabbi Harold Kushner’s When Bad Things Happen to Good People. After the rabbi’s three-year-old son was diagnosed with a rare disease that would take his life by his teens, he pondered the question that became his best-selling book. Rabbi Kushner believes that although God is good and loving, nature randomly metes out bad things. God does not send bad things. They “just happen.”

I dropped in again a few days later, and she thrust the book at me. “I didn’t like it,” she said. “He says some things ‘just happen’ with no reason. I can’t accept that. There has to be a reason my husband is like this.”

Withdraw life support — but first…

Just as these situations usually progress, she and her three adult sons began to ask the staff and physician about withdrawing the life support. They were told it would be quite appropriate and could be managed in a way to provide comfort.

Washington fans during the Super Bowl years

It came down to an impromptu meeting with me in the hall outside the patient’s room. “Dad would hate this,” said one of the sons. They all agreed it was time.

Then another son spoke up. “Wait a minute. We are all headed to the Super Bowl to cheer for the Redskins.” (Of course, he was referring to the Washington Football Team once known by that name.) The patient and his sons all had season tickets, a prized possession back in the day when the team won three Super Bowls in nine years.

“It would be really sad to go to the game in Minneapolis right after dad dies. Let’s do it after the game.” They all agreed.

“Watching” the Super Bowl on life support

I had heard a lot of reasons for delaying withdrawal of life support — waiting for a sibling from California to arrive at the bedside or waiting until someone gets married. Waiting for a football game was a new one for me. I could imagine the patient would have been fully behind the delay. Football means that much to some people.

I did see the compassion in this act. Perhaps having the game on in the patient’s room just might get through to this poor soul. I didn’t really believe it would, but what do I know.

The plan worked. They took the man home days after the game, where they withdrew life support, and he died peacefully.

And the Washington Football Team beat the Buffalo Bills that year, 37-24, in Super Bowl XXVI.

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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.

 

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.

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