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The Bitter End

Tuesday, January 15, 2013 - 05:00 PM

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

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Comments [112]

William Porter from Lapeer, Michigan

I lost my wife Friday evening, June 27. She had suffered with Alzheimers for close to 11 years. She was 79. I almost believe we were a textbook case. Everything I had read about Alzheimers and the various stages was spot on. We were on Aricept and Namenda in the early stages and those drugs certainly slowed down the progression. We spent the last 4 years in a nursing facility and the past two years needing full care with ADLs. Swallowing became an issue about a year and a half ago: we switched to pureed food, worked fine. A month or so ago swallowing reared it's ugly head again but we just took small bites. One week before her death it really became an issue. We discontinued meds because we couldn't swallow. Long towards the end we used morphine and ativan in small doses to ease her into eternity. I was assured all along the way she was not in any discomfort. I wouldn't put my worst enemy through it but with proper medical assistance and knowing full well the disease was going to win eventually made it a little easier.

Jul. 09 2014 10:38 PM
ReepRN from NC

That MD is not very knowledgeable about intubation. Paralytics are usually just briefly used for the procedure, then just sedation and analgesia. We are told, repeatedly, in nursing school, you NEVER paralyze someone without pain medication and sedation---that's what happens in "awake" operations, which are a medical mistake. We use monitors to measure the degree of paralysis and sedation to keep the patient comfortable. Overall the talk was helpful and true, but that was VERY MISLEADING and dramatic.

Jul. 09 2014 10:45 AM
ct182

If I was terminally ill or brain dead or close to it, I wouldn't want to be kept alive by machine. What kind of life is that? I can understand going through radiation treatment for cancer if there is a large chance I'll recover. But if there's no hope, whats the point? Same with being kept on life support if I was brain dead or something. That's no way to live, laying in a bed, unable to participate in life. I feel like having someone's life prolonged like that isn't about keeping them alive but mostly about the family members who aren't ready to let go.

Apr. 21 2014 01:44 PM
Sheila from Calgary

My dilemma is that my brother is very ill and we have gone over a Personal Directive with him but he says he wants CPR, Ventilator and Feeding Tube and he is already on Dialysis. However, he has spent most of the last year in the hospital and pulls just an oxygen tube out of his nose after about 1/2 hr, pulls bandages off his eyes less than 12 hr after eye surgery, won't wear his stump protector on his stump. I know he says he wants these things but I know he won't cooperate with their administration but I am bound to fulfill his supposed wishes. I don't know what will happen. I am totally hoping he will just die in his sleep before I have to make his wishes unknown.

Myself, no heroic measures, pain and infection control only.

Apr. 03 2014 11:37 PM
Ken Murray MD from Studio City, Ca

Thanks again for all the thoughtful comments. Talking about these issues are, by far, the most important thing.

I wanted to address myself to Paul, the physician who had the two comments.

Your example of the patient is exactly what I had hoped would happen. If you look at your post, you never bothered to discuss end-of-life issues with your patient. You left that to your intern, I guess because it wasn't important to you. You phrased your questions to the patient in such a way that he was "cornered" to accept CPR under all circumstances. But let's say that you had a theraputic misadventure, like the woman paramedic in Texas recently, who was pronounced Brain Dead, but the hospital would not honor her wishes. If the resultant outcome was that the patient was in a chronic vegetative state, and his heart stopped, you have created the scenario that the patient will get CPR, and get shocked, and shocked, and shocked. Is that really what they would want?

At least, by hearing this podcast, the patient took action that got you to actually talk with him, although briefly, about his thoughts on end-of-life.

As for the article that you cited, another physician has already pointed out that it was not what you'd represented.

Mar. 05 2014 01:44 PM
John L from Langhorne PA

Your program made it sound that being intubated and put on a ventilator is an awful experience. My Mom was on a ventilator twice. When a pulmonologist, who underestimated her resilience and wanted her to consider DNR in the future, questioned us, my Mom replied, “I tolerated it, Doctor.” Thanks to another pulmonologist, she was weaned off continuous oxygen.

I strongly agree with avoiding needless suffering and misallocation of medical resources, just because our medical system is good at rescuing people. But, as primary caregiver for my Mom, most of her needless suffering and medical expense were the result of gaps and mistakes in her long term care. If she had good, consistent, comprehensive care, most if not all of her hospitalizations and lengthy nursing rehab stays could have been avoided.

One doctor was overzealous in a DNR conversation. He said, “suppose your Mom’s heart stopped during surgery, would you want CPR?” According to a hospital Vice President of Quality, this is not an appropriate question because surgery is inherently risky.

Mistakes were made in my Mom’s final hospital visit, six days of “conservative” treatment. When she got into trouble, she was not taken to ICU immediately, and I was not notified in a timely manner. After six hours of labored breathing on supplementary oxygen, she died. We had agreed to the DNR order at admission, and this resulted in wearing a purple bracelet and having a negative reference linking it to her condition, in the hospital notes. This fits with the comment by Dr. A from NY, who said that there is a tendency for DNR-labeled patients to receive substandard care.

Mar. 04 2014 04:20 PM
bruce braden from alabama

Listened to podcast of "bitter end" last week, and while I agreed with the medical side of the wishes, saw this interesting take on "futile" codes and CPR. Many organ donations apparently come from short term "code" survivors.
http://journals.lww.com/ccmjournal/Abstract/2013/12000/An_Under_Recognized_Benefit_of_Cardiopulmonary.15.aspx

Feb. 26 2014 07:34 PM
myrarountree from Sonoma County, California

I have MDS and am moderate-almost high risk. It is low white blood cell count (.9). The treatments only have response in 50% of patients after 4-6 mo of chemo and in some clinical trials as high as 70%. Regardless, it only extends life for 18 to 32 months, though I am told I have a 5 yr average life expectancy. I am not inlcined with these statistics to undergo treatment when and if necessary. Currently, I receive acupuncture 1 x /week and slow Vit C drip (Myers drip) once per week and my WBC's have gone up by .1 and my platelets have returned to normal and some other blood factors are going in the right direction just slowly. I have also changed my nutrition. I am feeling mostly fine, much better than before the alternative treatments, when I was having many infections. Alternative treatments, given that they are valid, are slow but non-toxic. Allopathic medicine may be faster but toxic. I am having a hard time identifying if the doctors are recommending treatment because they don't know what else to do or if they actually think it improves life erxpectancy at a quality level or if it is just a chance with poor response rates. Do any oncology nurses or MD's who are reading this have professional opinions about whether Vidaza treatments are worthwhile in any way other than to "possibly" extend life and at what quality of life? Hopefully, this will be a response to my email address. Please specify MDS in the subject line somehow.

Feb. 10 2014 02:15 PM
tonya M-Toft

Thought you might enjoy this… Inspired by the show!

http://visual.ly/how-doctors-choose-end-life

I created an Infographic using the study and a little inspiration from a former ER doctor

Jan. 24 2014 06:46 PM

Great comments Kim.

It's a hard point to make - that the wishes of the family can, deep down, be very self serving to the family and not the patient, their loved one, the one who they want so very much to stay. It's such are difficult situation that every person would struggle to withhold treatment because, of course, that would mean losing their loved family member. Which reinforces why plans need to be made beforehand.

Did anyone else notice an analogue to the morality thought experiments in the Morality episode? Maybe it's hard for families to give the instruction to withhold treatment because that is but one step away from causing that person's death? That might explain why making a plan to withhold treatment is relatively easier to do than to withhold treatment right when the last chance is upon you.

Nov. 29 2013 12:36 AM
Kim from Monterey, CA

I LOVE Radiolab! I also really liked most of this episode, but as an ICU nurse....I really wanted to leave a comment and finally got around to doing it today : )

Paralytics are generally avoided because we know now that the use of them can cause muscle issues after the acute phase of illness is over. Generally speaking we use a sedative such as Propofol and Versed in combination with a pain medication such as Fentanyl. The ideal goal is to have an intubated pt awake enough to follow simple commands such as wiggle your toes or squeeze my hand, yet asleep enough to not be really uncomfortable. The reason for this is that patients do better in the long run if they aren't heavily sedated.....for multiple reasons.

There are 2 reasons off the top of my head that I can say we use a paralytic. #1 at times we will use a one time dose to help a pt achieve therapeutic hypothermia after cardiac arrest to preserve brain function. Shivering can delay the body's cooling, so a paralytic helps lower temperatures faster. #2 if a patient is so critically ill (lung-wise) we will sometimes us a paralytic to help compliance with a mechanical ventilator....basically you are too sick to be doing ANY breathing on your own. Or you are on a huge bed that rotates you onto your belly while on a ventilator...not something you'd want to wake up in.....

Ok....so most ICU nurses would not want most of the interventions done to them...just like doctors. I will say that if we see a younger patient, we do seem to want more interventions because it is just too cruel. But as a whole, we see families struggle every day to hold onto a fragment of hope....for themselves....not for the good and peace of the patient. Many times the patient is ready to let go far sooner than the families. It is so difficult to gently steer families towards letting go. Most are in a state of shock. Most do not want to understand or hear that they need to let go.

Also, many times families will insist upon the doctor not following a Do Not Resuscitate wish from the patient. Even if the patient has made their own wishes known....many times it is NOT honored....THAT is an unfortunate fact. That should not be allowed, but it is just not black and white. Say you have a recoverable illness...most would want to try medical treatment. But what starts as recoverable, doesn't always end that way.

Regardless, I was glad to hear your podcast on this issue. But I was really unhappy with the comment from one of your guests saying that everyone is paralyzed. That is just not true.

Sep. 17 2013 12:35 PM
Mark V.

I had IV hydration when I had a bad stomach flu and couldn't hold down water. It wasn't bad at all. I have no idea why so many doctors would avoid it.

I'd much rather have 1 second of pain as the needle goes in than be constantly thirsty and dehydrated.

Aug. 20 2013 02:44 PM
Alejandra O

I made an infographic with some of the data from here and a few other sources - I think all together it's a pretty illuminating look at how Americans plan (or fail to plan) for end-of-life and long-term care.

http://aftersteps.com/posts/181-endoflife_care_and_costs_infographic

Jul. 10 2013 03:23 PM
James from New Haven

It's all about the $$$.
"Your grandfather is going to die anyway... in fact, he is pretty much already dead. However, we can keep their heart beating for quite a while as long as someone's footing the bill."

Jul. 03 2013 03:43 PM
Nemi from Long Beach

Simone de Beauvoir's "A Very Easy Death" addressed this norm of prolonging death at all costs in medical environments despite the obvious lack of quality or benefit to prolonging it. It is quite depressing that just because we have the ability, the knowledge and technology, to extend life that it necessary means we should. So much of medicine becomes about using all options rather than measuring the quality and benefit of these choices. Birth and death are two normal functions that our culture ignores and then blindly ends up in a passive patient role instead of making informed choices that change and create our life and the quality of it. I wonder if this is a reflection of our cultural change from quality products/lifestyles/property to measuring quantity as value?

Jun. 14 2013 04:45 PM
larry thompson from Bel-Aire Assisted Care

ASt 73 with a pulmonary artery 96% clogged and depending on one lonely stent, my worst fear [in spite of a DNR and appropriate documentation] what I fear most is falling into the hands of living doctors and as ready hospital staff, anxious to by-pass all my wishes, with which my children agree. The "in between time"--before they arrive and put their thumbs down. Everyone in America over the age 40 should be required to read Never say Die.

May. 23 2013 09:54 AM
Jeff (MD) from Minneapolis

in response to "Paul, a physician from San Francisco":

I believe you're misunderstanding the NEJM study, in terms of outcomes after in-hospital cardiac arrest. All subjects in this study survived the arrest to hospital discharge - those were inclusion criteria for the study. Everyone who died with CPR or died before they left the hospital were never included in the first place. Rather, the results were long-term outcomes after these discharges. Unfortunately, the outcomes you suggest are possible after in-hospital cardiac arrest remain far, far, far better than the actual results of our current efforts. I certainly wish this were not the case (I'd be overjoyed with the outcomes you describe below), but the facts remain. That is, a better interpretation is that - even of the small minority of patients who survived to be included in this study - half had moderate to severe neurologic deficits, and 1 in 5 died within a month even after their initial event.

To quote (but noting the misunderstanding as above):
"A study in this weeks New England Journal refutes the premise that resuscitation is pointless (Chan, et. al. Long Term Outcomes in Elderly Survivors of In-Hospital Cardiac Arrest. NEJM March 14, 2013; 368(11): 1019-1026). In this study of 6972 patients who had a cardiac arrest while in the hospital 82% were alive at 30 days and 45% at three years. At discharge from the hospital about half of the patients had mild or no neurologic deficits."

May. 20 2013 02:59 PM
lorraine

i went to see marita davis 20 montechar ave liverpool 96076150 to be hypnotsing as i had a bad past it was $140 which she told me it was better to pay her than to pay my fotex and buy food to feed my 4 kids and she didnt hypnotising me and my foxtel is cut off i have no food for my kids and she knew it and she just talk about her son playing with him self and sweared always

Apr. 30 2013 08:54 PM
Bernard Farrell

Your readers would probably be interested in this article from The Atlantic about a doctor who's trying to better inform patients and care givers about the reality of treatment options.

http://www.theatlantic.com/magazine/archive/2013/05/how-not-to-die/309277/

Apr. 29 2013 12:51 PM
Sarah from Hawaii

What if the results are due to the idea that doctors may not want to live with brain damage? They know how diminished their quality of life would be with such an impairment whereas other people might not understand what implications it holds, making their decisions poor ones.

Large parts of the data might be due to this rather than being due to the understanding of the invasivity of life-prolonging procedures. Perhaps the original study addresses this. If anyone has a link to the study I would very much appreciate it!

Sorry for being a skeptic. :)

Apr. 22 2013 06:09 AM
John Baetke from Guildford

I live in the UK and believe here in England we probably have the worst healthcare system apart from third world countries. Following dental work I displayed auto-immune problems and have had a strep throat and various episodes of unpleasant issues of joint pain acid re flux and fevers. This has been going on for 4 years and basically they can't find anything wrong with me although I suspect Lupus or some other auto-immune disease. The healthcare system and it's workers does not care for it's patients and basically leaves you to survive or die thinking only of their own paychecks.

Apr. 20 2013 10:11 AM
DanialGarcia

A healthy or trustworthy relation between doctors and patents but few of them understand it...<a href="http://health.usnews.com/top-doctors/directory/best-in-oklahoma/">Oklahoma doctors </a> are good in it to understand the patients feeling and their pains.

Apr. 04 2013 07:57 AM
Janelle

I think this podcast is so important. I am an RN at a nursing home and come across this scenario regularly. Usually it is the relative who is not ready to let go, sometimes it is the patient themselves who do not fully understand how invasive it can be to keep someone alive. I have grown and matured and have come to help many elderly people die with the dignity that they deserve. It is so, so important to give these people all the necessary information and truth they need during this process - no matter how awkward or sensitive the subject matter.
Even though I am a healthy 27 year old - I completely agree with the doctors in this podcast. I would never want anything to help extend my life artificially...now or at age 100.
Thank you for this podcast - I think it will help a lot of people.

Mar. 29 2013 07:39 PM
Rachel

I didnt listen to the podcast but wanted to add my 2 cents on the sedation/paralyzation: IT IS WRONG TO PARALYZE SOMEONE WITHOUT SEDATION..and you SHOULD add a pain medication. For goodness sake. I was doing my senior practicum for nursing in an ICU and a patient was on an Arctic Sun device, which puts the patient into a hypothermic state after serious cardiac arrest to try and improve their chance of survival.. I learned in class to never give a paralytic without a sedative. She was on a vent, and was supposed to be given the paralytic for "shivering"...She was on a rather small dose of propofol, and NO PAIN MEDS. she was being frozen. That was insane to me. I questioned it to the RN and my instructor at the time. My instructor, and the RN on shift agreed. Once the doctor actually came up, he agreed thankfully. The patient was one of those that was unconscious on the scene/cardiac arrest at home and although she had CPR and the Arctic Sun, she still passed a few days later. Im just glad at the end, she was given more medication to pass through more peacefully after such interventions.

Mar. 28 2013 04:50 AM
Elizabeth from Maryland

I want to thank you for this podcast on medical interventions at the end of life. When you were going through the list of medical interventions in the survey, I was thinking of my father's last four months. I believe he probably had all ten of the items on the list. His doctors assured us that he would be just fine in the end, yet one catastrophe after another drew out the agony for months until, naturally, he caught massive infections and died.

The whole experience has made me think that I do not want to receive those interventions--yet I am only 42 and nowhere near "dying age." Dying in the hospital is the one thing in this life that scares me the most--the doctor quoted was absolutely right that we wouldn't wish these tortures on our worst enemies.

We really need to have those important communications between patients/families and doctors to decide when to keep prolonging life and when not to do so.

Thank you for opening up this discussion.

Mar. 24 2013 06:01 PM

It's strange but at some point in this story, I lost the fact that who was being talked about were elderly and chronically ill patients. I'm not sure why.

I grew up around doctors and hospitals, so I understand that life extension (in terminal cases) is pointless and painful. My mother worked as an administrator for an Intensive Care unit. What she saw there made her decide that all she wanted at the end of her life was to die painlessly and without major medical intervention. The words she uses are to "die with dignity." It is a huge contrast to going into a hospital, young and with fairly good chances of survival. And by young it might mean, 20's or even 50's, without any major health issues or chronic conditions. While in medicine there are all sorts of very difficult decisions, end of life care is probably one of the "easier" ones, mainly because the variables and end results are very much reduced (mainly meaning death). It is no surprise to me at all, when framed in that way, that doctors would completely agree. And again, in other circumstances, life saving procedures are just necessary.

Mar. 22 2013 06:12 PM
Paul, a physician from San Francisco

A study in this weeks New England Journal refutes the premise that resuscitation is pointless (Chan, et. al. Long Term Outcomes in Elderly Survivors of In-Hospital Cardiac Arrest. NEJM March 14, 2013; 368(11): 1019-1026). In this study of 6972 patients who had a cardiac arrest while in the hospital 82% were alive at 30 days and 45% at three years. At discharge from the hospital about half of the patients had mild or no neurologic deficits.

In other words, the vast majority of patients survive and many of them suffer no ill effects in terms of brain damage. Also of note is that this was a group elderly patients, all over age 65, so we would expect that outcomes would be even better for younger people.

It is a shame that this story ran just before this large and definitive study was published as now many Radiolab listeners have the false belief that resuscitation cannot help them.

As I detailed in my previous post, I wouldn't be posting this here if I didn't already have first hand experience with a patient dangerously misunderstanding the information presented in this story. Before a young patient with asthma dies because they refused intubation after listening to this story, I think the author and radiolab have a responsibility to air a follow up piece that corrects listeners misperceptions, especially in light of this new data.

Mar. 17 2013 09:10 PM
Nasuna from Montreal

Not being a doctor myself, I was floored to hear the 8% stat regarding the success rate of CPR. I've taken the EFR course twice and I never heard that depressing number. Could this be because it's too discouraging? I really think everyone should listen to this episode while they're healthy in body and mind, so that they can make sane decisions and go peacefully. I recently saw the film Amour... which along with this episode acted as a kind of catalyst for a photo shoot and and some further pondering:
http://nasuna.wordpress.com/2013/03/15/siesta-eternal/

Mar. 15 2013 11:02 PM
Ajlester from Singapore

This podcast took me back three years to when my father owned the way he wanted to die in a way that had us all in awe. I wrote an essay on it, which covers what it was about him that made it possible for him to decide how to end his life and see that decision through, and what it required from us as a family. It is my fervent hope that this account of his death can help people facing similar situations.
http://www.restroomreflections.com/essays/Another_Word_for_It_Alison_Lester.pdf

Mar. 14 2013 06:12 AM
Emily

Interesting but a bit lacking. I know they mentioned a survey about doctors' health, but they never said what the results were regarding healthy lifestyle choices. Anecdotally, I can tell you a certain doctor I know, my dad, waited until a decaying tooth caused him a fever before going to the dentist. My grandfather, a doctor, had signs that a stroke was coming but he didn't do anything about it until he was forced to go to the hospital. My grandfather had high cholesterol, my father smokes and what of other doctors? Sometimes they just know enough to justify their bad behavior. Or maybe they somehow think their mortality is different than their patients.

Also, hospice! Not even a sentence about it. Come on guys!

Otherwise, a thoughtful short.

Mar. 10 2013 11:55 AM
Paul from California

I am an attending hospitalist physician and I just admitted to the hospital an otherwise healthy man in his 20s who had a fairly minor infection that didn't respond to outpatient antibiotics. When I reviewed the intern's note I was astonished to see that the patient had requested a DNR/DNI status. I asked him to clarify and he cited this radio program and said that according to the program "9/10 doctors" would not want CPR. I assured him that there are probably no healthy doctors in their twenties who would refuse CPR and also asked him what he would want us to do if he choked on his eggs tomorrow morning. He changed his mind and requested full code. I haven't had time to listen to the program in it's entirety, but It appears the "9/10 doctors" came from a study that asked physicians if they would want CPR if they had a reversible brain injury.
I see a lot of unnecessary suffering at the end of people's lives due to overly aggressive care and I agree that the harms outweigh the benefits in many situations, but intubation and respiratory support can save lives in conditions like asthma and pneumonia, so if the take home message from this program is that everyone should refuse resuscitation regardless of age or medical comorbidities then I think this was a very flawed and dangerous piece of journalism.

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Mar. 07 2013 02:58 AM
Ken Murray, MD from Studio City, Ca

As always, good to see comments that further the discussion.

With respect to sedation and mechanical ventilation, there was a front page story on this in the LA Times today:

http://www.latimes.com/health/boostershots/la-heb-brain-waves-eeg-anesthesia-20130304,0,4680626.story

Wait a minute: Is that patient really unconscious?

"But sometimes things go wrong. Patients remain aware of their surroundings. Some even remember procedures. In a 2011 Booster Shots post, I wrote about several terrifying memories reported by patients under general anesthesia. One man undergoing heart surgery recalled that he "could hear knives [like a buzzing sound]” and “could hear and feel the saw cutting into me.” A woman having an adrenal gland removed remembered "hearing events of the surgery, having the feeling that she couldn't breathe, feeling the sensation of the breathing tube, feeling anxiety and stress just briefly. She felt panic."

Jason from LA: One thing that it might be easy to forget, is that we don't have the luxury of choosing which patients, nor educating them, before they have their cardiac arrest. We take them as they come. What non-medical professionals don't have any feel for, is what actually happens in front of us on the front line. Various studies are only an approximation of what happens in any individual situation, but the trends clearly demonstrate something different than what most people expect.

For example, when you say "In fact, the data might actually show they have a chance in the vicinity of 37.5% minimum, and that's given you have no information about how long it's been since they became unconscious."

you might not know that what we are attempting to accomplish with CPR when a heart has stopped, is to get the patient to a defibrillator. That's it. For a defibrillator to work, the patient needs to have an abnormal rhythym that can be shocked back to normal. Only 25% of patients do.

We're kind of getting in the weeds, here, and feel free to actually look up statistics on what people have found, but the point of this program is to talk about people at the end of life, and you are right, the numbers in that group are skewed....they are MUCH MUCH worse.

Mar. 04 2013 09:35 PM
Jordhan from San Francisco

Although almost a great podcast for bringing to light the truth that we healthcare professionals all know, that none of us want to die in hospital, there is a serious misstep in the truth of this podcast. In the discussion of mechanical ventilation, use of paralytics MUST always coincide with IV sedatives. Paralytics without sedatives IS torture and against any critical care practice I am aware of. Having been an ICU nurse for ten years, I find it appalling that Radiolab would present this as a general truth about the practice of paralyzing patients. It is a last resort for mechanical ventilation synchronicity as it has serious sequelae, or side effects. That mistake aside, I applaud the effort to illuminate the often overlooked side of modern medicine.

Feb. 26 2013 09:13 PM
Martin Erb from Richmond, VA

Great and necessary podcast. This conversation has been on my mind ever since I was among the care providers for a very good friend in hospice at home years ago. This conversation should be had in every family and circle of friends. In it lies one of the many possible paths to improved quality of life for those near the end of life, and more rational total cost of healthcare for everyone.

Feb. 26 2013 08:53 AM
Peter from Manhattan

Relevant: "Why Things Bite Back" by Edward Tenner. One of the key points of the book is that technology tends to turn acute problems into chronic ones. The end-of-life issues discussed in this segment are one example of this phenomenon.

Feb. 24 2013 08:15 PM
Dennis from Brooklyn, NY

Thank you for this topic. Can I ask you is the transcript for this episode available? I'd like to send a link to my hearing impaired friend.

Feb. 23 2013 02:34 PM
Lisa

Easy to see the different way different health care providers view this based on their clinical experience. As a nurse, at my recent recert for CPR, I began a discussion about DNR. The room was filled with dental care providers. They all thought I was crazy when I stated I was DNR, felt very strongly about it. I think the reaction would have been different if more nurses, MDs, RTs, others who see what happens in the hospital setting. Not sure, but I would guess statistics are worse for cardiac arrest that occurs NOT in the hospital setting.
Just goes to show, we don't know what we don't know. Therefore, we all need time for these discussions with our providers, family members AHEAD of time, and not when the crisis is happening.

Feb. 23 2013 12:59 AM
Jason from Los Angeles

Let me start by saying that I am a big fan of Radiolab's work, but I was a bit disappointed by this piece. I felt that the statistics being quoted hid as much understanding as they revealed. Let me explain why I wasn't convinced.

To get good information from statistical studies, you must be sure the answers line up with the questions, and I heard the potential for large disconnects between questions and answers. Statistical analysis is a little like Jeopardy, in that you look at the data in various ways, and out pops various answers, but then you have to be really careful that you figure out what the question is to which you just got an answer.

You began with the Precursors Study, and said the youngest people in that (very skewed) sample group were in their sixties by now. Then you went out and obtained a near-random street sample and, it's true, you might have SAID “severe dementia,” but I would almost guarantee you that very few of them heard, understood, and remembered that, and answered accordingly. So, some portion of the disparity between the answers of the Precursor and street samples can be explained by these two sample groups not actually answering the same question, even though both might have been ASKED the same question. (Remember, the same thing happened in the piece about Tic Tac Toe?)

Same goes for CPR. You can't even attempt to answer a question about the efficacy of CPR for the general population from non-random data without first getting an understanding of the distribution of your sample. If it were the case that, say, 90% of people who wind up receiving CPR ALREADY are ready for hospice anyway, then to claim these statistics say much about CPR is misleading, because they merely reflect the distribution of the sample, not the administration of CPR. If you want answers about CPR using the Japanese data, you have to compensate for the skewness of the data. Of the 8% who did lived longer than one month, it is possible that they are mostly people who were in good health, and the range of outcomes within that 8% might mostly be explained by the time that elapsed before treatment was administered.

Overlooking these kinds of details can make it sound like even for someone who is in the prime of life and excellent health, if something should befall them such that one would contemplate administering CPR, you might as well not bother because they only have a 3% chance of a "good outcome" anyway. In fact, the data might actually show they have a chance in the vicinity of 37.5% minimum, and that's given you have no information about how long it's been since they became unconscious.

I feel that this story might be very misleading in a dangerous way. I came away feeling that the thrust and purpose of this story was to discourage any attempt to resuscitate anyone, ever, across the board. If so, I am dead-set against that. If our society is to have a discussion about DNR, it should be set within the context of hospice, not CPR.

Feb. 22 2013 08:26 PM
KateC from MA

I am not a doctor, but I have watched loved-ones die. To me, it is absolutely clear: I want to be allowed to die when my age is advanced or my quality of life is poor and there is no chance for my recovery. It seems insane to me that anybody would answer any other way. But we are all different, and all shaped by different experiences.

I had to make this choice for my own daughter whose brain failed to form properly. Though I am still very, very sad about it, I know with complete peace and certainty that refusing treatment for my precious baby was a gift and an act of love. She might have lived for months or even years with heavy intervention -- and it would have been pain and misery the entire time. There are fates worse than death.

Feb. 21 2013 04:42 PM
Ken Murray MD from Studio City, Ca

There were some comments about what people would choose in the general population. I mentioned that this has been extensively studied, for example:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2938889/

"One large cross-sectional study retrospectively examined a stratified sample (n=16,678) of all U.S. deaths in 1986 (excluding trauma and perinatal deaths) and reported living wills were in place in 9.8% of all deaths and 16.4% of cancer deaths"

"The SUPPORT study reported that although 127 (39.5%) of 339 patients preferred not to receive CPR, less than half had a DNR note or order written."

"In our previous study of patients with MSCC, the median survival time was 4.1 months.......Twenty patients (23%) had a living will, 27 patients (31%) had health care proxies....."

So even in this group of people with a very poor prognosis, a very small percentage have actually documented their wishes.

Feb. 14 2013 12:06 PM
Natalie

My father had a long battle with frontal lobe dementia. Towards the end of his disease he contracted pneumonia and the antibiotics were not working fast enough. We made the decision to put him on hospice with pain medication. I have no doubt in my mind that that was the correct decision.

Feb. 13 2013 02:46 PM
Ken Murray MD from Studio City, Ca

Great comments, all! I think it is important to be TALKING about this, and CONSIDERING the information.

A few notes on specific comments:

Patients on vents ARE given sedation, but it is often not sufficient to block sensation. Talking to patients who have endured it is eye opening. It is sobering to talk to patients who endured procedures while paralysed, but could feel it all.

CPR always generates the most pushback. Yes, people who have certain arrythmias do better, but that is less than 25% of people, so even the maximum THEORETICAL good outcome is 25%.

But we are NOT talking about average people, in this context. We are talking about terminal patients. For them, it is terrible:

http://www.ncbi.nlm.nih.gov/pubmed/19813029

Where terminal patients were rescusitated, ALL of those who responded were dead in 48 hours.

Jerry, here is the 8% study:

http://www.ncbi.nlm.nih.gov/pubmed/21050434

Rick, you are right, context is important. We are NOT talking about average people, nor newborns....we are talking about people with terminal illnesses.

But the context is also that people deserve to know the truth about outcomes. CPR does not have a 75% success rate on ANYONE, much less the average person, as shown on TV. But that is the info that people think is right, and that borders on tragic.

"It is medical malpractice to paralyze a patient without sedation. We do not do this to patients--it's in a similar ballpark to removing the wrong limb in surgery."----I agree. Wrong limbs are removed all the time. Patients are paralyzed without sufficient sedation all the time. Just ask them. The responses are scary.

"i think if you asked anyone if they had a head injury producing a persistent vegetative state, they would sing a different tune."
Wrong. A lot of literature clearly demonstrates that.

Feb. 07 2013 01:12 AM
Robert from Minneapolis

This was a worthwhile episode, but how about doing a podcast about the flip side: how much people are willing to put up with to live. Sure, there are situations where it isn't worthwhile to preserve life. But many people think that they couldn't live with being in a wheelchair or being blind, but they discover that they can not only life with it, but can have pretty good lives. It reminds me of Aesop's fable about the old man and the sticks: An old man is complaining about how hard it is to carry his bundle of sticks, so he sets them down and wishes that Death would come for him. Sure enough, Death arrives and asks the old man what he could do for him. The old man says "Could you help me pick up my bundle of sticks?"

Feb. 05 2013 02:55 PM
Dorian Innes from Los Angeles

Really fascinating! Loved this episode because I was recently discussing death, in the context of doctors and patients.

So interesting to hear Jad's father discuss his wishes for dying.

Here's a post I wrote on the topic: http://dorianinnes.com/post/39914101359/dealing-with-death

Feb. 03 2013 02:51 PM
Julia Roig from Puerto Rico

I was surprisingly disappointed by parts of this episode and yet the part regarding advanced directives was quite good. The case scenario of doctors commenting on what interventions they would wish for if they were in a state of "dementia" seemed to make a departure from the conversation and entered a generalized statement regarding CPR, and mechanical ventilation. The individual who inferred that people are pharmacologically paralyzed while awake for mechanical ventilation was incorrect and did a great disservice to critical care medicine where researched based care in pain control and sedation are constantly being utilized and reevaluated on each individual patient. I also feel this program did a disservice to CPR no matter how low the statistics are. Honestly, I am not sure how much interventional CPR gets reported anyways in a clinical environment. Would love to see those stats. Again,it seemed to me there was a departure from a certain population (dementia) to a generalized statement of how awful it is. Quite disappointing. I love this show usually, but I think today's show should have been done with more care & research to the facts.

Feb. 02 2013 01:32 PM
Patrick from New York

This certainly made me think. I want to remain alive with QUALITY: an amount of independence and the ability to contribute.

I also want my memory of my loved ones to be of them living QUALITY lives. I will not keep someone alive just so I don't "lose" them. They're gone when they aren't themselves any more.

People can "die," but remain alive. I think of it as people with brain tumors, TBIs, hormone level changes, etc. We take our physical bodies to mean too much. Any time our world is reframed in a new light to us, we are born again.

Feb. 02 2013 02:25 AM

I was uncharacteristically disappointed in this episode. The questions that were being posed by the interviewers and the doctors in this piece could have been answered more fully and more correctly by a nurse rather than a doctor. Absent from the discussion in this piece was Hospice care, a relatively novel paradigm for managing the very conundrums posed in this piece. Doctors occasionally demonstrate competence regarding end-of-life care, but nurses are leading the way. I'm a Registered Nurse and Certified Hospice and Palliative Nurse, and I had to cringe listening to this piece while driving around to visit my home-care hospice patients, because the people being interviewed clearly had no idea what they were talking about - just as lost as many of our patients are before they receive hospice nursing care. Next time, ask a nurse, not a doctor!

Feb. 02 2013 12:40 AM
Susan Chemey from Indiana, USA

I have been an ICU nurse for 30 years, and have put dying patients through painful procedures I would not wish on my worst enemy, all at the direction of well-meaning family members. Your show has been a public service-let the public know that extraordinary life-prolonging measures need to be carefully considered.
I will do ANYTHING to help preserve quality of life, but I HATE being a part of prolonging painful dying.
One of my favorite sayings is, "There are many things worse than being dead...I have participated in all of them."

Jan. 29 2013 05:50 PM
Benjamin Bloch from Florida

Great information

Jan. 29 2013 12:38 PM
Debbie Yorizzo from Brooklyn

Thank you for a tender light upon a tough topic. I wonder if American doctors keep patience alive to "the bitter end" because the American culture infuses unrealistic heroic thinking and a championship mentality in all we do. Also, I wonder if doctors are so afraid of being sued that they do all they can to keep patience alive. Are doctors thinking about the patience quality of life, or just keeping their own medical reputation safe and secure?

Jan. 29 2013 12:34 PM
David from Pelham, NY

While the vast majority of doctors would not want any life sustaining treatments when near death, patients or their loved ones for those who have lost decision making capacity, have, historically,all too often, not been given sufficient information by thier doctors so that they can make informed decisions about treatment and care. In New York State,since 2011, the Palliative Care Information Act,a model for the nation,has required that terminally ill patients (or their health care agents or surrogates)be offered information and counseling on palliative care and end-of-life options,hospice among them, including prognosis and the risks and benefits of the options. Armed with this information far more patients will opt for a better quality of life, as studies show, with good palliative care, rather than an extended life with poor quality. End-of-life discussions must take place and when they do the results are generally quite positive. The wishes of patients are respected and they have better deaths.

Jan. 29 2013 11:29 AM
Cate from New Mexico

Thanks for broadcasting this, it sheds a light on a really unpleasant truth. In October I lost my stepfather to severe COPD and an unfortunately bad bout of pneumonia. It was so very painful to see him suffering in the ICU, and while I know the medical staff there was doing their best to help him, I felt like swatting them away every time they wanted to do something else for him. It was prolonging his pain, and once we knew that he wasn't going to recover and he was sent to hospice, we were all sad but relieved that his suffering was over. After that experience, I completely understand the physicians' point of view.

Jan. 28 2013 08:48 PM
C

Thank you for doing a show about this difficult yet universal topic. I am a physician, and this is something that we deal with every day. I agree with everything that you said, and I think that more people need to have these difficult conversations.

Jan. 28 2013 07:49 AM
Bluemann from hungary

This episode reminds me of the music video of Metallica, Enter Sandman. It also reminds me of a hungarien poet, Sandor Petofi, One thought "One thought keeps bothering me: Dying between pillows...inside my bed.....O let me be a tree, blasted by lightning,......Let it be lost in din and clash of steel, In cannon’s roar and trumpet’s loud appeal..."
Is it preffered to dye in the prison of your body, in a fight of glory, or in your sleep....suprise me

Jan. 27 2013 11:37 AM
Philip from Brooklyn, NY

Both of my parents had DNR forms completed, signed, sealed and placed in their living wills. The forms were co-signed by a doctor. This was done in Florida. Both, in different years, ended up in comas in New York. Each time I presented the DNR the doctors and nurses scoffed. Why? Because the document wasn't legal in NY only in Florida. So each state controls and regulates the DNR order. Here's the information from Wikipedia which supports my dictum:

In the United States the documentation is especially complicated in that each state accepts different forms, and advance directives and living wills are not accepted by EMS as legally valid forms. If a patient has a living will that states the patient wishes to be DNR but does not have an appropriately filled out state sponsored form that is co-signed by a physician, EMS will attempt resuscitation. This is a little known fact to many patients and primary care physicians that can cause patients to receive treatments they do not want, and this law is currently being evaluated for a constitutional challenge.

Jan. 26 2013 08:36 AM
Dr.A from NY

I am a physican in practice for over 30 years who disagrees with the prevailing "DNR" (Do Not resuscitate) sentiment. As a patient, I will refuse to sign a DNR because it is impossible for me to predict my circumstance and pre-assign any incongruous treatment conditions upon my providers. There are just too many variables to consider and a simple document will not suffice. I trust that my proxy will make the appropriate decisions based on knowledge of my sentiments, available treatments and expected outcome. Furthemore, there is a tendency for DNR-labeled patients to receive substandard care in our institutions. This is particularly important in a a healthcare environment that uses "evidence based" justification to ration limited medical resources. I have no interest in producing an imperfect bulletpoint statement that relieves legal, moral and intellectual responsibility from my providers and the society they serve.

Jan. 25 2013 12:54 AM
Steven Moore, M.D. from The D

So where I agree about the sentiments of the other physicians about end of life care and life prolonging care in the face of a chronic disease and no quality of life. That being said there was some outdated information put out in this podcast. For starters paralysis on vents is not really how it works anymore. Vents are smart enough now to breath with people and there is not a need to paralyze patients on the vent. Also, when you put people on the vent you give them sedation and anesthesia (pain control plus drugs that make them more sleeping and less agitated) to keep them comfortable. They are not lying awake and trapped in paralysis as he suggested. Even when people are given paralytics on the vent they are given pain control and something so they won't remember it of some sort. Second, there is not really a flat number for survival from CPR. Certain cardiac rhythms at time of arrest, certain age groups of patients, and certain easily reversible cause of arrest do have reasonable odds for survival from CPR. However, that number gets dragged down when you throw the coded patients in who should have never had CPR i.e. multiple organ failures prior to cardiac arrest, long times before CPR was started ect (which is a much larger number).

Jan. 23 2013 11:29 PM
Jennifer S., MD

@ Jerry - The article that Dr. Gallo is citing is "Collaborative effects of bystander-initiated cardiopulmonary resuscitation and prehospital advanced cardiac life support by physicians on survival of out-of-hospital cardiac arrest: a nationwide population-based observational study." The rest of the citation is Crit Care. 2010; 14(6): R199.

@ Dr. Gallo - I think the numbers you provided are a bit misleading. I agree with your point about the general population having misconceptions of what CPR can do, but I object to the particular numbers that you cited for outcomes. In the context of the conversation it sounded as though you were talking about in-hospital cardiac arrest, especially the comparison to TV outcomes.

I found an article called "Trends in Survival after In-Hospital Cardiac Arrest" (N Engl J Med 2012; 367:1912-1920), which might be more relevant. They looked at trends in survival and other outcomes for more than 84,000 patients. Survival to discharge increased from 13.7% in 2000 to 22.3% in 2009. Rates of "clinically significant" neurologic disability among survivors decreased from 32.9% in 2000 to 28.1% in 2009. These numbers are still far worse than the 75% of dramatized codes, but it's more than 3% also.

Jan. 23 2013 09:09 PM
chanio from Buenos Aires, Argentina

Assuming that politics is the line that is traced between our way of living and what could be actually done. I find that the doctors' idea is reflexing the actual bad state of health preserving in US.

To watch this clear, imagine that they are trapped alone inside a cave. Like most of us, they would hold on, fighting to get free. Even in a hopeless situation. And everybody knows that it is the only way of overcoming the 'impossible'.

But, if there are other humans that instead of helping us to escape, they are exhausting us with pointless excuses like money, power, etc. Then the idea of getting free becomes just another problem...

I guess that at present, our contradictions deal more with our human relations, than with our spirit. And the feeling is like needing to isolate from everybody.
I don't mean that there should be more money invested. I mean that people should be more sincere.

Doctors shouldn't be blamed as hard as they are today. And patients shouldn't be abused as they are at present. But, that is just an idea from the back of my mind. Not something debatable.

Jan. 23 2013 04:35 PM
Jerry from San Diego

Please provide the citation that Ken gives regarding 2010 study for the 8% survival outcomes for CPR -- I can't find it at all, and have found conflicting statistics, depending on the circumstances surrounding the cardiac arrest. Thanks!

Jan. 23 2013 10:24 AM
Rick from Manhattan

@ Josh H. (from Santa Barbara CA) - I think your final statement is very relevant. It's all about CONTEXT! And just to get this out of the way, CPR has a high failure rate because every CPR administered is part of the statistic, including those done by untrained people, and where defibrillation isn't done in soon after CPR is initiated. However, if you're a young and healthy person who suffered a heart attack due to something other than cardiovascular disease, or some other heart disease, and you were in a hospital, why wouldn't you want CPR... considering it's being performed by professionals who know what they're doing, and it's only a stop gap until someone grabs a defibrillator.

The better way to frame the question is, if you're suffering some chronic disease, and your health begins to fail, would you want a DNR (do not resuscitate) order? The idea is would you want heroic measures taken if it will not prolong life, and/or will not lead to an improved quality of life down the road. Most people would probably say no... (family members might say yes for sentimental reasons). But if there's a good prognosis for you once they take heroic measures, such as removing a 9 year old appendix, you'd be insane to deny treatment.

If you're likely to recover, and have a high quality of life, the answer seems to be a pretty obvious YES. The best example is babies. Babies are given CPR, survive, and go on to live long productive lives. To withhold CPR to babies in the NICU on the basis of low the efficacy of CPR statistics would be sheer insanity, not to mention criminally negligent.

Clearly, this question, (and this dialogue), is being framed wrong.

Jan. 23 2013 09:03 AM

I have two friends that were revived by CPR and they live perfectly normal lives. One friend's heart randomly stopped one morning in the kitchen, but his parents knew CPR and after treatment in the hospital, 11 years later, he is alive, well and happy.

Another friend of mine was in a coma for 3 weeks after being hit by a bus. She is perfectly fine now, 7 years later, and leads a healthy and happy life.

I am not a doctor, but in the instances I have personally seen, emergency care has worked and two loves I have are happy and healthy.

YES, please revive me!

Jan. 22 2013 08:41 PM
Megin from Washington

The timing of this was amazing for me. My father suffered ventricular fibrillation just after Christmas. In the middle of a sentence he just dropped to the floor, unconscious.
His heart stopped and the paramedics brought him back three times. Because his heart had started to quiver rather than pump blood to his vital organs, his brain was severely damaged with only his brain stem being left unharmed.
After eight days in the hospital, watching him being kept alive on a ventilator, we had to make the decision to let him go. None of it was like what we have seen on TV.
My mother has been feeling incredibly guilty that she did not do cpr but, after hearing this, I doubt it would have made any difference.
My father died quickly and painlessly (I have to believe). Bringing him back to spend over a week in the hospital only prolonged everybody's suffering.
Thank you for this episode. It does a lot to relieve the guilt of thinking that, had cpr been administered quicker, he would be fine now.

Jan. 22 2013 02:20 PM
John Duzs from Wake Forest, NC

Well, I am 87 and it's about time to think of the "good bye world" moment. I am in good health, enjoying life. I DO NOT WANT any life prolonging procedure, if there is no hope of regaining functioning mind and body. If I could arrange my demise, I would choose lighting!

Jan. 22 2013 10:41 AM
morgan from colorado

Recently we learned that my dad has a pretty big brain tumor and he goes in for surgery this next week. Of course we had to have the end of life talk and sit down with the lawyers. These decisions are so extremely difficult to make even when your loved one is sitting right there to help you make them. Of course right after listening to this piece I made him listen to it. I personally work in the health care field in the pharmacy, I have just been afforded the luxury of not having to witness the life or death interventions. I agree with most of the doctors decisions!!!

Jan. 22 2013 12:41 AM
Dr. Holly Hinson

I'm a huge radiolab fan, and I must say guys: great topic, superficial treatment of the subject matter. There were some serious factual inaccuracies. One example: It is medical malpractice to paralyze a patient without sedation. We do not do this to patients--it's in a similar ballpark to removing the wrong limb in surgery. As a Neurologist who does intensive care medicine (particularly severe brain injury), I think some branches of medicine deal with this better than others. I was a little stunned by the physicians that were interviewed. Yikes guys!

Jan. 21 2013 08:05 PM
Ben Smith from St. Louis MO

Hi. My father has been in the ICU for the last 48 days, and my family is just now facing all of these difficult, detailed, and heart wrenching questions illustrated so beautifully in this piece. We also came into this period, the end of life for my dad, with the same thoughts and hopes and expectations expressed in this story.

If you're lucky, like we are, chosing to DNR, and understanding the point when someone you know goes from living and understanding and sharing to someone who won't be capable of a meaningful life, is one of the great and last acts of love you have to express for someone. It's also incredibly heartrending.

I'm sharing this with my mom tonight. Thanks for expressing this so well, Radiolab.

Jan. 21 2013 06:48 PM
Robert from Minneapolis

I spent the night in the hospital a few months ago, and I was asked if I wanted to be revived if my heart stopped. I laughed and said "Yes!" I'm sure the doctors have seen so much that they know when the best time to decline treatment is. But a lot of people really don't understand. They fear cheating themselves out of life. I'm reasonably young and healthy. If I needed CPR, I'd probably do OK, it seemed obvious to me that I would want CPR if my heart stopped beating. The problem is that it can get less obvious and more confusing as the chances for a good outcome decrease. I'm willing to put up with quite a lot to stay alive, but only if I can actually do something with that life.

Jan. 21 2013 10:41 AM
Josh H. from Santa Barbara CA

The Physician that you interviewed was inaccurate regarding the topic of intubation. And for the sake of the general public, a little more information is needed.
We do use paralytic agents when we need to intubate (insert a breathing tube) someone. But we also use a multitude of other medications at the same time, such as heavy sedatives and pain medications. The paralyzing agent lasts for about 3-5 minutes in most cases and then is essentially ineffective. We do however continue to give sedative medications and pain medicine. In some cases it is necessary to give more paralyzing agents, but we always maintain a level of sedation so the Pt. is NOT in a state of wakefulness and unable to do anything about it. (as your physician stated so plainly is often the case).
To leave a pt. paralyzed and without sedation would be against our ethical responsibilities.

As for when people choose to abstain from "life saving" interventions such as CPR and the like? i think if you asked anyone if they had a head injury producing a persistent vegetative state, they would sing a different tune.
Simply asking someone if they would "want CPR?" of course they would say yes without context.

Jan. 21 2013 12:10 AM
Johnny

This has to be the worst podcast i've listened to yet...They made it sound like they were asking the regular civilians if they wanted any of the procedures listed on the chart based on a condition where that would be a seemingly obvious choice to say yes, where as they asked the doctors specifically about the brain trauma or whatever...OF COURSE I WOULDN'T WANT CPR!! In fact I wouldn't want any of the things listed above if it was related to some type of brain trauma...
Further, the rest of the information given by doctors was vague and expected...disappointed, radio lab

Jan. 20 2013 10:13 PM
Kim from Los Angeles, CA

I was there when my husband died from cancer. Both of us were 44 at the time. He had been dealing with extreme side effects from the chemo. He became unconscious. I remember when our doctor said, "He is going to die, probably by the end of the week. The question is do you want to try to make arrangements to get him home?" I was so relieved that the doctor had used the "D" word. My husband had signed an advanced health care directive. I had the fluids and oxygen removed and the pain medication dosages were increased. Our kids got to say good bye, and I was there with other family members when he let go of his last breath. From my experience, I have changed my advance health care directive - I want nothing but pain medication. I want to repeat my husband's death. It was not quick, I hope it was painless but he gave us all the gift of having the opportunity to say good bye. It was an honor to be with him and something that I will be forever thankful for.

Jan. 19 2013 08:43 PM
Jelena from Belgrade

Wow. This podcast is something the general public should really listen to.

I am a medical doctor myself and I couldn't agree more on everything being said here.

Jan. 19 2013 02:31 PM
Inez from New Jersey

II wss 15 in 1946 when my grandfather was dying, at home, from colerectal cancer..I sawhim dwindel down to a skeleton after months of agonizing pain.. I don't recall him getting any medication at all. I have been very specific about my end of life care..No tubes of any kind, no extreme life saving methods, ju some meds to ease my pain, but not render me unconscious. No DNR. I don't want my daughters to have to make that decision for me. My Mother died at age 88with DNR which we talked about months bef. If I'm not having a quality of life at end stage, why would I want to prolong it?ore her demise

Jan. 18 2013 10:25 PM

You said almost everyone you interviewed said they want to die in their sleep. I want to be wide awake! I even spelled out in my advance directive that because I am an explorer and am motivated by curiosity, I do not want sedatives that will impair my consciousness, even if it means being less comfortable. I will only get one chance to know what dying is like, and I want to be conscious to experience and remember every step of the journey. I am a probate and elder law attorney on the Oregon coast. I was also introduced to the neo-shamanism movement by a friend. What is the obsession with being "comfortable"? It seems the medical profession is in the place now, as to dying, that it was in as to childbirth in the mid 20th Century: "We'll give you an epidural, you won't feel a thing." My wife had two natural childbirths, in which I got to participate. She described the experience as a "hoot", and wouldn't have missed it for the world. Sure, it's an uncomfortable, strenuous experience, like playing in the Superbowl or climbing a mountain or having sex. Death is one of these quintessential human experiences, and I for one do not want to miss it out of an excessive need to be comfortable.

Jan. 18 2013 02:30 PM
Auban from CA

I just listened to this and am thinking about my younger sister's death two years ago. She died of suicide just after her 30th birthday. I know every suicide is different, and every survivor's experience of suicide is different, but I see her death very much in line with this broadcast. My sister suffered from depression for most of her life. She attempted suicide at 17 and spent the next 13 year working really, really hard to make her life liveable. In the end, it wasn't for her. She looked ahead to decades of having to decide every morning not to die. I think what she wanted most of all was a peaceful death. While I so wish she were here today, I also know that's a selfish wish. She was in so much pain. Clearly not directly related, but we all deserve a peaceful death.

Jan. 18 2013 01:29 PM
anon

Smells like a faulty study. Not wanting CPR? Not wanting blood transfusions? Not wanting antibiotics? Is this a joke?

Jan. 18 2013 07:16 AM
Chris from San Diego

Although it is true that there is prolonged suffering death on one end and the typical "good" hospice death on the other, the true "bridge" between those extremes that was never mentioned either in the podcast or in the comments is Hospital-based Palliative Care. These are specialty consult service teams who are experts in pain and symptom management. More importantly they are experts in communication. Communication skills are the true MD/clinician challenge in trying to effectively help patients and families navigate the paradox that Robert mentioned. I am a social worker on such a team and witness people everyday avoiding tragic outcomes.

Jan. 18 2013 12:30 AM
Jocelyn Swigger from Gettysburg PA

Jad, your father has given you and your mother an incredible gift. My mother's DNR order meant that, when she was brain-dead from a sudden anyeurism and just looked asleep, my sister and I didn't have to make the choice to unplug her: she had made it. A terrible time was infinitely less terrible because she had been so thoughtful. It was also incredibly comforting that she was able to donate organs to five people; I had always thought of organ-donation as altruistic, but it's a gift to your own family in the deep down selfish gene way: it still makes me feel better about her death the way nothing else can. I wish I could tell her "thank you" for making her death so much less awful than it could have been.

Thanks for another thoughtful episode.

Jan. 17 2013 09:25 PM
Steve Nerlich from Canberra, Australia

It's important to specify that heroic measures imposed on someone in hospital (who presumably has a serious pre-existing condition already) is one thing.

However, administering CPR (and ideally defibrillation) to someone who is otherwise well but has a sudden cardiac arrest in the community is a very worthwhile intervention. If a well-trained person responds quickly, a full recovery (at least to pre-existing health level) is quite achievable.

Agree hospital staff can be driven to do far too much, but we should encourage people in the community to keep learning first aid and keep up-to-date. You really can save a life - effectively.

Jan. 17 2013 08:36 PM
tatiana from NY

I was shocked at the non-doctor's answers. I watched my mother die from an early onset type alzheimer's disease (gone at 67), abused in a nursing home, moved to another to where her teeth were not brushed for a year which eventually caused sepsis. My family and I denied antibiotics as she knew no one, feared everyone and was to having strokes. My siblings and i have a pact that if any of us end up in a similar situation, we will respond exactly as the doctors did.

Jan. 17 2013 08:05 PM
Dave

'Extending' life for those with out the societal power to opt for a clean end MASSIVELY boosts the profits of the medical industry, of which the 'hospice' movement is a very willing part.

US doctors are far from naive when it comes to understanding the 'for-profit' choices made by the medical system in America. So, they fear the double whammy of useless and distressing treatment, and treatment recommended purely to bleed medical insurance cash reserves.

There is another side of this, however. Robust old people that occasionally take up hospital resources, but don't have the 'decency' to pop off. In the UK, for instance, otherwise healthy old people have a tendency to die from 'pneumonia' if they insist on using hospital beds one time too many. Be in no doubt, euthanasia is actively practised on old people society would rather have 'move on'- status and wealth mean that some never face this option, but ordinary people have much to fear from a hospital stay, as they grow ever elderly.

A balance needs to be struck, and the 'for profit' element of healthcare for the elderly should be illegal. Likewise, old people shouldn't have to fear that a passing illness (beyond a certain age) doesn't become an excuse for putting them down.

Jan. 17 2013 08:00 PM
TT

Just a different perspective. Had an end of life conversation with patient's family saying that the ultimate outcome is death no matter what we did. They did not like what I said and when the patient finally died after everything was done, on ventilator, hemodialysis, feeding tube, vasopressor drips and finally CPR for about half an hour. The family turned around and sued me. How's that for being patient's advocate and thinking about patient's quality of life and comfort?

Jan. 17 2013 07:35 PM
myvox from Boston, MA

Not surprising in the least. Quality, not quantity. I feel that there is a drastic difference when using these procedures in an acute condition with reasonable resolution and quality of life potential versus using them in a patient with severe, terminal and painful illness.

I've grieved for my terminally ill patients going through these procedures, prolonging life at the expense of comfort both emotional and physical, often times more so than I have grieved at their final passing. I have wept over to the fear of possibly being that patient myself. I feel strongly that my medical education and experience gives me a clear perspective in decisions that I make to forgo these procedures myself, as most the doctors surveyed for this piece. As a doctor I have sworn an oath to do no harm, and in my mind, allowing a peaceful death and shortening suffering in the conditions outlined above fall well within that jurisdiction.

I am veterinarian.

Jan. 17 2013 06:47 PM

I'd like to throw in a perspective from a similar field, and that is coming from my career as a veterinarian. I am grateful that I have euthanasia as a treatment option available to my patients that are suffering terminal illness. As so many people say, they want to die peacefully in their sleep, with their loved-ones surrounding them, which is what I can provide to their pets. That being said, many veterinarians would likely agree with the MDs on end of life care. However, it has also come to be a major problem for veterinarians and their suicide rates...we regularly see how easy it is to die peacefully in your sleep and end your suffering. Not sure where I'm going with this, it's just what the episode made me think about.

Jan. 17 2013 06:43 PM
TankVaMank

Sounds like some pretty crazy stuff dude.

www.ec-anon.tk

Jan. 17 2013 05:19 PM
Ryan from Sunnyvale, California

Great episode, just wanted to emphasize that a mention of hospice care would have been nice. I work for the volunteer department of a hospice and home care agency that allows patients to die in their own homes, surrounded by loved ones, while still being cared for by nurses and recieving pain medication. This option looks to me like part of the 'bridge' that was discussed in the episode.

Jan. 17 2013 03:01 PM
Patrick Mathieu from Canada

For the past 10 years, I have been speaking to groups about the value of embracing you mortality. I wrote a book on the topic and was featured in a feature-length documentary film and interviewed on TV and radio (including an hour-long interview with Dr. Oz on Oprah & Friends.

I have always been amazed at Western society's ability to pretend that death doesn't exist. We think it's perfectly reasonable to make plans for what we'll do with our lottery winnings, or to save for a retirement that we *might* get to enjoy, but no one wants to talk about the one thing in life that is absolutely certain. When we make the conscious decision to face death on OUR terms, we are able to access a tremendous amount of personal power. Thanks to Radiolab for this fantastic episode!

Jan. 17 2013 02:18 PM
Clare from Boston, MA.

Thinking about what the end will look like doesn't have to mean surrendering any enjoyment or meaning of life in the present. I think that we tend to assume that if you are clearly picturing the end of your life in a foreseeable time frame, than you are giving up hope. "Hope" should mean that you expect to be present, comfortable, conscious to the degree possible, and able to appreciate the world for all the days that you have left, not just extending the total number of days to the absolute maximum.

My grandmother recently passed away in hospice, and although I regret that I wasn't able to make it out to her before she died, I am not at all sorry that she went before she started to suffer.

Jan. 17 2013 02:07 PM
martie heinsRN from Woodsfield OH

1. In the 90's, the AMA developed a superb program for physicians on how to address end of life issues. It was free to any hospital that asked for it, and my hospital did. The program sessions were packed with nurses and other ancillary medical workers, but very few physicians were interested.
2. The original ObamaCare legislation authorized Medicare to pay for one fifteen-minute doctor's appointment, to discuss Advance Directives and end-of-care life issues, and payment for additional appointments every five years to discuss/review. This element was subjected to "killing Grannie" and "death panel" rhetoric, and was dropped from the legislation. Including this provision in subsequent legislation might provide a forum that might lessen the "rotting at the end of tubes" scenario with which I myself became far too familiar.

Jan. 17 2013 01:34 PM
kmbmarshall from toronto, ontario

Great piece...if you've lived through the prolonged death of a loved one, you can see why doctors, who see death regularly, would feel the way they do. North America needs to come to terms with 'dying a good death' and allowing 'right to die' legislation to be debated and passed.

Jan. 17 2013 12:51 PM
Retired ICU RN from Maine

One of the strongest reason I left ICU bedside nursing was the realization that the horror of prolonged death would continue and continue as it does to the present. Society only hears of the wonders of modern medicine (which are in actuality few) and rarely if ever of the usual outcomes. Witness the harm caused by opposing compensated physician discussions about end of life care.

I was not at all surprised about the statistics with the physicians. So few of the public really know what is in store for someone who has the misfortune to not have advance directives. They may have the ultimate misfortune to have family members who may believe that the interventions are potentially helpful rather than what they are really - a death prolongation as one slowly rots at the end of tubes. Graphic but that's how my colleagues and I described it.

As a final note, what wasn't mentioned was that were our society to support a "good" death and not do nearly hopeless interventions, it would just about solve the US's financial discussion about Medicare in very short order.

Jan. 17 2013 12:40 PM
Ami from Brooklyn, NY

This subject matter is the only anxiety producing topic that I require medication for. So when I started listening to this episode, I had to brace myself...I held my breath for a moment. But as the short continued, I realized how important and educational this conversation and perspective is. Jad's [real] conversation with his dad was especially meaningful...it's a conversation we all need to have with our loved ones. At the end of the short, instead of feeling anxiety, I felt enlightened, somewhat relieved, able to deal and absolutely touched. Thank you.

Jan. 17 2013 11:07 AM
Joseph Gallo MD MPH from Baltimore, Maryland

Thanks for the comments, I'm learning a lot from everyone.

I second the sentiments about nurses being great. I would add that studies that have asked nurses about their end-of-life preferences have found similar desire to limit care.

Jan. 17 2013 08:12 AM
Dick Dee from Oxford, UK

I was moved especially by the conversation Jad had with his father - I realised I need to have same with my mom, and one of these days with my own kids. My mother is Dutch and people there have thought and debated the issue of a good death for many years.
Would it be possible to point to some resources for planning, e.g. creating a legal document such as Jad's father did?

Jan. 17 2013 07:52 AM
Davide from Londoj

As a son of a retired phisycian, the whole concept doesn't surprise me. I can remember a day when he came home after a day at work where an old lady passed away and - following the protocol - he had to do CPR, cracking some ribs, with no result. He was happy for the lady that he died serenely and the CPR didn't bring her back.
I even had my dad mentioning (when I was bit too young to get the full extent of the meaning probably) the idea of NoCode.
Anyhow, thanks for sharing this.

Jan. 17 2013 06:40 AM
Ken Murray, MD from Studio City, Ca

Thanks for all the comments, everyone! I want you to know that I'll read them all.

Gail, hospice was not mentioned, because we were really talking about GETTING to hospice, which requires a patient to forgo aggressive therapy.

We made the comparison between doctors and the general public, because that is what rolls in the door. AT THAT POINT, education is a difficult proposition.

I agree with several posters, that nurses are probably even more against aggressive therapy at the end of life. (but I don't really feel comfortable speaking for them.) Nurses, by the way, are the best people I've ever met.

Jan. 17 2013 03:27 AM
Missy_M from Flowood, MS

Thank you for doing this story! I am a nurse in an ICU and deal with this problem constantly. Nurses too will tell you they don't want to die in a hospital with tubes connected everywhere. But it is a hard thing to explain to some families who believe that being a good child means doing everything possible to keep their parent alive. And no matter how delicately we try to explain quality of life vs quantity of life they just don't get it. Hopefully your program will get families talking about it and planning. I for one have told my family my wishes not to pointlessly prolong my life, and I'm only 29 years old.

Jan. 17 2013 02:07 AM
Maddeline from Florida

Great Podcast and thank you so much for bringing this issue to the attention of listeners. I am a C.N.A for a Hospice affiliated Home Health Agency and I am so glad I am able to work for people and families who understand what a truly "Good Death" is and that it is in fact attainable.
People really do want and deserve to die at home where they are comfortable and surrounded by love. Also once all of the stressful medical decision making is over relatives can focus on each other and making the most of the time left.

Jan. 16 2013 11:22 PM
Patricia Clark from Millis, MA

I liked this episode very much!

Jan. 16 2013 10:25 PM
Gail Waldeck from Asheville,NC

I was disappointed in two ways: 1. No mention of hospice was made ie, the doc could say to a terminal patient and the family, "I don't have any thing else to offer and I recommend consideration of hospice services (or something like that). And 2. The survey compared the decisions of medical doctors to those of the "uninformed/ignorant' public. A more significant survey would have included the elderly, nurses, staff who work in nursing homes. etc.
It was done more like comparing the ideas of kindergarden children to high school grads.

Jan. 16 2013 06:14 PM
Suzanne Venesta

Extending life unnaturally is inhumane and degrading to the subject. It in no way comforts or helps family and friends. When it's time to go, it's time to go, peacefully and, it is to be hoped, with some remaining dignity. Thank you for the podcast.

Jan. 16 2013 03:44 PM

Yes yes yes yes yes!! I am a nurse in a hospital and we deal with this on a daily basis. I spent the entirety of the podcast answering the rhetorical questions out loud and literally jumping up and down. As a member of the ethics committee at my hospital, we discussed yesterday again the need for patients and doctors to have this conversation when the patients are healthy. I think a large reason that non-medical people want "everything" done is (as you pointed out) in popular media, it works. However, they don't realize that when they say "Yes, I want CPR" what that actually means it "Yes. Please crack my ribs for as long as it takes for me to return to a state of viability even though the chance of me getting back to the life I had prior to this medical emergency is 3%." We as healthcare professionals need to educate people so that they truly can have a Good Death.

Well done. I'm posting this short on every single social media site I'm a part of. It's that important.

Jan. 16 2013 02:47 PM

Anyone else getting a glitch that skips ahead around 6:49?

Jan. 16 2013 01:26 PM

Thanks for this podcast, I'm going to share it with my workplace. I work for a hospice and 'having the conversation' is something we all talk about and even advocate for on National Healthcare Decisions Day.

Jan. 16 2013 01:00 PM
Andreya from Nacogdoches, TX

I would love to hear a full hour on this, exploring the subject a little deeper- processes of death, stages of grief, assisted suicide, etc. 20 minutes isn't long enough to discuss such a universal yet deep topic.

Jan. 16 2013 09:55 AM
bob minder from wbur

okay, i thought is was a good short, but when it began, i thought it was going to be a very brave one, that you were going to have an interview with dr eben alexander, since his book is out and visibly about right now. this short was good... but you know the old saying, "did you dig that? well DIG this." check it out, guys. and as always, you really are a joy for me! bob minder

Jan. 16 2013 08:42 AM
Ant Beck from UK

Thanks for the podcast. It's good to see an emphasis on quality of life as opposed to the unthinking application of medical technology in all situations. I was surprised by the definition that the host thought that an understanding of the intervention risks and success rates was the cause as to why medical professionals would only choose pain relief if they are in a near vegetative state. I think there are probably multiple causes. Other factors will include issues concerning quality of life and intellectual security. I believe the medical doctors in the survey have thought deeply about their own mortality and how they might consider living when they have lost the senses and mental facilities that make life beautiful. When life is merely existing and not living then a quick and painless death (hopefully, surrounded by loved ones) is an empowering option. I would like to see the results of this survey if it were extended outside the medical profession. There are likely to be many professional groups that cluster around the same results but without the knowledge of the risks and implications of medical intervention. Such results could have a profound impact on paliative care and policy approaches.

My great fear is losing my mental faculties and being kept alive by medical intervention when I have no appreciable quality of life, no recollection of my family and friends, do not understand what is happening to me and am deemed incapable of making a decision.

Jan. 16 2013 05:36 AM
don harjo from Bishop, CA.

I'm surprised that so many people are unaware of the consequences associated with extending a life through advanced health care. As a health care professional it was a topic of great discussion among my peers as well as the physicians we worked with. When you see first hand the pain and suffering of not only the patient but of family, it gives you a whole new perspective on 'quality of life' and compassion/empathy.

Jan. 16 2013 03:31 AM
Julian from Los Angeles, CA

What a timely subject for myself and my family. On January 4th, my 85 year old mother suffered a severe asthma attack where she stopped breathing for an unknown, but substantial amount of time. In the Emergency Room she was put on a ventilator, but fortunately my father, sister and I had clear enough minds under the stress to realize that it was best to let her go in peace and not "do everything you can" as Raina said. We decided to take her off the ventilator and if she was meant to go on, she would breathe on her own, but alas, it was her time. I listened to this Podcast and am even more certain we made the right decision.

Jan. 15 2013 11:45 PM
Ted

I have not listened yet, but am not surprised by these results. An aging population, in a nation more concerned with cost of healthcare than quality of life, is unlikely to benefit from this study.

Jan. 15 2013 08:21 PM
Raina from Queens, NY

I did not listen to the podcast yet, but here are my thoughts based on the graph. I'm a hospital based nurse and am NOT surprised with the answers by doctors on the graph. I bet you will get similar answers from nurses, too. More of the non-medical public should be aware what it really means when they say "Do everything you can." It rarely means the patient will have increased quality or quantity of life. Any quantity obtained often comes with reduced quality. The body usually knows when it has reached the end. More the the non-medical public needs to know this.

Jan. 15 2013 08:06 PM

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