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The Bitter End

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We turn to doctors to save our lives -- to heal us, repair us, and keep us healthy. But when it comes to the critical question of what to do when death is at hand, there seems to be a gap between what we want doctors to do for us, and what doctors want done for themselves.

Producer Sean Cole introduces us to Joseph Gallo, a doctor and professor at Johns Hopkins University who discovered something striking about what doctors were not willing to do to save their own lives. As part of the decades-long Johns Hopkins Precursors Study, Gallo found himself asking the study's aging doctor-subjects questions about death. Their answers, it turns out, don't sync up with the answers most of us give.

Ken Murray, a doctor who's written several articles about how doctors think about death, explains that there's a huge gap between what patients expect from life-saving interventions (such as CPR, ventilation, and feeding tubes), and what doctors think of these very same procedures.

Jad attempts to bridge the gap with a difficult conversation -- he asks his father, a doctor, why he's made the decisions he has about his own end-of-life care... and whether it was different when he had to answer the same questions for his father and mother.

A chart of doctor responses from the Precursors Study:

 

Preferences of physician-participants for treatment given a scenario of irreversible brain injury without terminal illness. Percentage of physicians shown on the vertical axis. For cardiopulmonary resuscitation (CPR), surgery, and invasive diagnostic testing, no choice for a trial of treatment was given. Data from the Johns Hopkins Precursors Study, 1998. Courtesy of Joseph Gallo, "Life-Sustaining Treatments: What Do Physicians Want and Do They Express Their Wishes to Others?"

Guests:

Sean Cole, Joseph J Gallo, MD MPH and Ken Murray, MD

Comments [27]

Debby P from Indianapolis

I am so glad you ran this program to make people think about this subject. Let people die with dignity. In the medical world, it had been long known not to do CPR, dialysis,invasive testing, etc. when you are in end stage dementia. However, the public thinks mom (or dad) should be kept alive no matter what! This is ridiculous when you realize that mom would not even understand why you were putting her through painful procedures. This article is exactly correct.

Nov. 30 2017 10:06 PM
William from Manhattan

Whoa, guys, this is misleading! Not to be uncivil, but does anybody at WNYC/NPR edit/fact check your scripts? You should have disclosed up front in the audio (not just in a footnote in the web version) that the study showed MDs would opt out of CPR etc given a scenario of irreversible brain injury. I can imagine many people, not just doctors, would opt out of death-defying interventions in that circumstance. But I also suspect the same doctors may have expressed a more positive view of CPR etc in cases of heart attack or other "run-of-the-mill" potentially fatal events. You should really clarify in a future broadcast.

Nov. 28 2017 08:42 PM
Watt deFalk from Portland OR

The Radiolab crew quickly brought up all the TV shows showing fictitious success of these emergency treatments... but, not surprisingly, they avoided the elephant in the room.
If laypeople had the knowledge that doctors are privy to, their employers the hospitals would see a drop in their fat profits. I'm ready to label such unregulated capitalism, such addiction to profit, just as inhumane as a heroin-addicted parent letting his children starve. It's treasonous to the human race.

Nov. 28 2017 10:33 AM
JT from California

The 8% is misleading because it is too high. The question had to do with the survival rate for patients with end stage dementia, not a healthy person. CPR rates of survival to independent discharge for dementia patients are known to be 0%. Survival rates for CPR patients who collapse on the street and get excellent bystander CPR is around 15%. The 8% rate is for patients hospitalized for other reasons like surgery or infections.

Nov. 28 2017 12:00 AM
Nancy L from Oregon

I was shocked at the survival rate of CPR, of 8%? What is the source of that statistic?

Nov. 26 2017 07:11 PM
Daughter

Your show is absolutely on point and although my husband have end of life directives (no CPR), it s difficult to understand the end of life choices until you have been In that situation. Sadly, I now hav a much better situation having recently elections st a pirate to to Alzheimer's, which caused my mother to lose the instinct to eat and swallow. Mom landed in the hospital after a fall and instead of being transferred to a rehab hospital (which I expected) we wound up moving her to a hospice facility. If you can't swallow, you can't eat or sustain life. At 86 with Alzheimer's a feeding tube made no sense and would have given her no quality of life. We would have loved another year; another five years. Hospice was wonderful. Warm caring nurses, an open environment that encouraged family members, friends and pets to spend as much time as possible. There was unlimited pain medication to minimize pain. What I learned is that hospice does not provid IV fluids as this slows the process down. Ditto for tube feeding. Although, I understand individuals In hospice due to illnesses such as cancer are offered food and drink. Hospice is caring; it simply does not engage in medical research nterventions. We absolutely hoped for a turnaround, that we were wrong. But mm never regained the ability to swallow or show any interest in food. She was surrounded by family literally 24/7. It was as peaceful and pain free death you could hope for.

I did have one further surprise. In m state if you wish to be creamated and do not gave a written directive, all immediate family members must be contacted and a majority must give their consent. This causes needless pain at a difficult time. If creamation is desired...planning ahead can save some pain.

Nov. 26 2017 06:29 PM
JG from NYC

I listened to the program today on the car ride to my elderly father. I was going there knowing that I might be deciding whether or not to take my father to the ER to "save" his life again. I have saved his life 20+ times in the past 8 years and there is virtually no quality of life left. I decided instead to call hospice so that he could die at home with dignity. I will have no regrets. Thank you for your program today.

Nov. 25 2017 08:50 PM
Cynthia Fernald from California

I’m with the doctors on this. If my brain no longer works, give me pain meds and palliative care only. Anyone who has watched a family member die of Alzheimer’s disease — or any other difficult, lingering death — knows there are much worse things than dying.

Nov. 25 2017 06:14 PM
Norma Osborn from Arlington, MA

The commentary on people wanting to not die in a hospital left out some important issues. I have had a long career as an intensive care RN and know the issues very well.
The issue is a bit like the desire/goal to have NO pain after surgery.

Who will physically care for the ill person at home 24 hours/day? This means feeding/moving/bathing/medicating/watching, and being present with the ill person. Any adult children may or may not live nearby/have small children/have full time jobs/are ill themselves/ may not want to do it. Visiting nurses, hospice care and palliative care do not provide 24 hour care. Few people have the money to hire 24 hour staff (2-3 people/day) if they can even be located. The care may be required for several weeks.
MDs may assure a person that they can die however they want, but MDs do not have anything to do with trying to make the preference happen, nor do they have a view into the future to see what the circumstances around a person's death will be. For example, a person at end of life on a ventilator has previously stated a wish to die at home. If you take the person off the ventilator, there is a high risk of dying in transit/before the person arrives home. It is impossible to hire nursing staff to care for a dying person at home on a ventilator. There just are not staff that do that.

So, the conversation about end of life preferences needs to be more extensive than just a person stating end of life wishes. The conflict between wishing to die at home and being able to actually provide end of life care at home is why so many people die in a hospital, no due to ignoring the person's wishes.

Nov. 25 2017 04:27 PM
Richard C from Minnesota

Wondering if Sean is considering a follow-up to this story; or, if there are any other studies similar to that in this story?

Jan. 30 2017 07:27 AM
Heather Short from New Zealand

Interesting article but I just wanted to comment on Ken's discussion about paralysis for ventilation as an example of how terrible medical interventions are. He failed to mention that these patients are also sedated so they are not aware of the muscle paralysis. I completely agree that some interventions do not add to quality of life, but it just seemed as if his description of the suffering doctors provoke was a little overstated.

Nov. 15 2016 01:17 AM
Anna J. Silverstein

I was surprised by how ineffective CPR is. I wouldn't want to live in pain and not be able to do anything. I honestly think death might be better than that.

Apr. 06 2015 05:20 PM
Linda T from United States

As someone facing stage 4 colon cancer, I found this episode quite thought provoking. Made for a fascinating dinner conversation. I learned that my family didn't really support my decision to refuse any intervention when the natural end is near. I am glad we were all able to share what our wishes would be, because I would have guessed wrong.

Feb. 17 2015 08:17 PM
Jennifer from Tucson

Thank you SO much for this very frank discussion of dying. I have heard much of this type information before, but your interview of your father, as a doctor, was exceptional. It's a discussion we all need to have - and be comfortable having.

Feb. 15 2015 04:04 PM
Gizella from Van Nuys

My daughter called me excited to hear our Dr. Murray on the radio. He was our long time GP and we trusted him. So glad we are able to have his advice.

Feb. 15 2015 02:40 AM
betty troutman from mt.vernon wa.

does radio lab have rebroadcast?ive never been able to find one....im looking for an effective prime directive amd a deterent to being scooped from off the street and into the hands of the avid life 'under any conditions'savers...b.

Feb. 14 2015 02:47 PM
Gordon Putnam from Waynesboro, VA

This was a terrible show about end of life decision making. Suggestion, go to La Cross Wisconsin and talk to the people at Respecting Choices and see what you discover.

Feb. 14 2015 01:54 PM
April from NJ

I wasn't surprised by the CPR statistics. When I took a CPR training from the American Red Cross, they taught us that you only give CPR (chest compression & mouth to mouth breathing) when a person has no heart beat and is not breathing. If you have a heart beat, but not breathing, you can give mouth to mouth but you shouldn't do chest compressions because the force used for chest compressions on an adult heart that is beating could put that heart into arrhythmia. In short, the EMT giving the class said - you only do CPR on someone who is already dead, otherwise you could kill them.

Feb. 14 2015 01:35 PM
Julie from NYC

My father was a physician here in NYC. He had a DNR and the ambulance crew who came to the apartment disregarded this. My father died in the hospital and I was forced to choose to take him off life support. Exactly what he did not want and the most painful time in my life.

Feb. 14 2015 12:59 PM
Tim from Los Angeles

This is a very deceptive use of the survey results, since it pertains only to a situation where the person has a serious brain condition without much likelihood of returning to normal functioning. The doctors' responses are not at all surprising. It's not clear if the people on the street were given this same scenario before answering yes or no to life-sustaining procedures. Most people I know would say no to such procedures if they knew their life would be essentially meaningless in a condition where they could do nothing for themselves and would not return to a normal condition. That's a "no brainer," pun intended.

Sep. 01 2014 05:42 PM
Phyllis Lay from USA

Your poll of doctors refers only to cases of brain injury. Most of us don't die of brain injury. My husband's oncologist gave him a stroke following chemo by ordering blood thinners and discontinuing testing for how thin the blood was. The cancer was in remission. The blood thinners caused death. The same thing happened to my second husband after he had a stroke. In neither case was death inevitable or wished for by the patient or any family member. Our wishes for life to continue while our relationships continued in spite of handicaps was made clear in our written statement to the doctors and hospitals. It is medical murder and should not be allowed to go unpunished.

Aug. 26 2014 05:57 AM
Noni from Facebook

Amazing, but not too surprising.

Jun. 30 2014 05:25 PM
Fix This from Viewing Radio Lab Websites

When I Google Radio Lab Bitter End, there are two websites containing comments:

This one is

http://www.radiolab.org/story/bitter-end/

But most comments are here:

http://www.radiolab.org/story/262588-bitter-end/

Mar. 20 2014 04:07 PM
Michael Slater from Evanston, IL

Dr. Murray was disingenuous and you let him get away with it. I am an emergency medicine physician, and I put people on life support on a regular basis. I give the paralyzing drugs that Dr. Murray spoke about as being instruments of torture. We ALWAYS give sedative/amnestic drugs at the same time. We know that the experience of being paralyzed, unable to speak because of the tube in the larynx would be torture. Every patient who gets paralyzed in order to facilitate mechanical ventilation gets some adjunct drug to keep them unaware of what's going on. Remember the Michael Jackson case? He was given propofol, a commonly-used sedative that keeps mechanically ventilated patients asleep and unaware. Other commonly used drugs are relatives of Valium (diazepam), which induce relaxation, sleep, and amnesia.

That said, I am one of those doctors who would not want life-prolonging treatment when I am unlikely to survive in a meaningful way afterwards.

All that said, thanks to your program and years of experience with the futility of medical resuscitations, I have shifted slightly the language I use with patients, emphasizing the pain and harm of CPR and defibrillation when death is a near-certainty.

Mar. 12 2014 11:32 PM
John Bishop from Churchville, PA

Great show today! Must admit...I'm not shocked at all by the doctors' responses. The responses, to me, speak volumes not only on their view of end-of-life care...but also on their view of the mental state/awareness of those who are alive yet unresponsive or non-communicative. I wonder if Jad's father would be willing to share the text of his end-of-life directive (either directly or paraphrased)...as I think it would be helpful for those who share his view and wish to appropriately include such in their own directive. Continued best wishes....

Feb. 23 2014 02:35 PM
Alfonso G from Lake Oswego OR.

This program shock me! Especially the misconception about CPR and what actual doctors think about care procedures. I heard that besides pain medication, hydration was a must.

Feb. 22 2014 11:09 PM
Katrina Barnum

The only thing I would want would be pain medication.

Feb. 20 2014 02:20 AM

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