An initiative in support of and an advocacy for the realization of real value of human capital in Ghana. The need for an efficient and balanced skilled people equipped to perform all manner of craftmanships for the Development of Ghana - Rueckkehrer Wissenschaftler.
I am an anesthesiologist and dealing with end of life daily. I feel so sorry for so many patients.. Great and truthful article and comments. One thing is wrong in US is the law system.
In the US, many tests, procedure, images etc are ordered just so that a doctor can protect themselves in the future from getting sued in case the lawyer’s ask “well why didn’t you order this and so on”. This can easily lead to over-investigation and over-treatment of conditions that may be benign to begin in. Not to mention the drain it has on the healthcare system.
In Canada, hardly any physician worries about getting sued on a daily bases. In fact, mistakes get made all the time, but most canadian pts do not even think about sueing as that is not culture of health care system in Canada. This ultimately leads to better rapport with patients and less unnecessary investigations and overall better guinine care.
I am the director of a university tertiarry/quaternary care centre ER, we see the sickest of the sick in their pre transplant phase for kidney/liver/heart/s bone marrow stem cell/pacreatic transplants. We happen to also deal with most of the nasty cancers: brain, pancreatic/billiary, ovarian, etc …
I can assure you, that my very own living will is extremely agressive, I have no desire to receive many of the treatments I watch daily. And to the first post above; when we are too frank about these matters, no matter how pleasant, conscientious, and diplomatic we are … we often lose our therapeutic alliance with families. We therefore allow families and patients to come to their own conclusion by presenting all the possibilities.
I work in Canada … there is no financial benefit in over treating patients, and we do not practice lawsuit prevention medecine.
Tattooed on my inner right bicep are the words: Cogita mori – Vivere disce.
As an ICU physician I agree with most of your article. However, you state that you have had hundreds of patients brought to you after receiving CPR and only one walked out of the hospital. Such nihilism is probably based on poor functioning of the chain of survival in your health system. If the patient arrives in the ED with spontanous circulation you should see survival rates with good neurological outcome above 25%. However, if a there is a large number of patients with non-cardiac origin, no bystander CPR, no access to 24-hour coronary intervention and therapeutic hypothermia the results may be dismal. Although there are extremely poor results in reviving patients with cardiac arrest in large parts of USA, lessons from other parts of the world learns us that optimal treament of cardiac arrest will lead to great benefits for a large number of the patients. I do however agree that CPR should be withheld in patients with debilitating disease.
Quietly, ingeniously and, of course, cryptically, the beloved – and sometimes feared – crossword setter Araucaria has used one of his own puzzles to announce that he is dying of cancer.
The Rev John Graham, who takes his pseudonym from the Latin for the monkey puzzle tree, told Guardian readers of his terminal illness in Friday’s paper.
Above cryptic crossword No 25,842 sat a set of special instructions: “Araucaria,” it said, “has 18 down of the 19, which is being treated with 13 15″.
Those who solved the puzzle found the answer to 18 was cancer, to 19 oesophagus, and to 13 15 palliative care. The solutions to some of the other clues were: Macmillan, nurse, stent, endoscopy, and sunset.
Speaking from his home in Cambridgeshire, Araucaria said this particular puzzle had not taken him very long, adding that a crossword had seemed the most fitting way to make the announcement.
“It seemed the natural thing to do somehow,” he said. “It just seemed right.”
That said, he has no plans to refer to his illness in future puzzles: “I should think this is a one-off because I don’t really know what else there will be to say.”
The 91-year-old said he was very pleased that his doctors had decided against surgery or chemotherapy – two prospects he had been dreading. Exactly how long he has left, however, remains something of a mystery. “There isn’t a prognosis, really,” he said. “They simply don’t know how long it’s going to take. I asked them last week how long I’d got, but nobody knows how long you’ve got! They said it won’t be years and years, but it could be a large number of months.”
Many stories……. . My only comment is that this is not about the nurse, the grandmother, the father or the doctor etc. This article should focus on the community as a whole having a right to say no and being educated with the facts and figures. Life is precious and is about quality not quantity.
This is a nice well written article with lots of warm and fuzzy moments. However, this is no way to talk about medicine. Let’s stick to the science that’s so far given us better results than witch doctors and quacks. I’d like to consider my treatment options based on objective science – not a few anecdotes. If over-treatment is common then where is the evidence? Where is the data?
If quacks or witch doctors are represented here I haven’t noticed. And if there were, beliefs are as important as science to the acceptance of death when science does not provide recovery. I hope you are not a doctor, Chris.
Thank you so much for putting into words the pain and suffering I see every day. I work in a busy ICU and these situations are what makes my walk from the parking garage to the unit so unbearable. Our society needs education, and as angry as I sometimes get when the 98 year old with terminal metastatic lung CA gets tubed, I have to understand that the families often times really don’t know what they’re doing. We need more doctors who can paint the true picture before starting this crap.
Great article. As an ICU nurse in a teaching hospital, I find that many of our physicians (mostly residents, but even some attendings) are extremely uncomfortable when it comes to discussing end of life issues with their patients. Often, we nurses have years more experience at the bedsides of the critically ill. It becomes our responsibility to advocate for our patients, to encourage the MDs to be honest with families and look at the “big picture”. Many of us feel as if we have to throw ourselves across our patients to prevent further invasive and futile interventions. Frequently, it is the nurse who finally convinces the MDs to stop the suffering. I’m not sure why this is. Are some doctors not being taught about the FACT that people die? Are they so myopic that they can they can only see as far as their next intervention? All I know is that, from my personal experience, nurses (and RT) are often the people that stand between the dying patient and endless, painful interventions.
I am a 30 year ICU nurse who is glad to see the change from saving everyone to talking about quality of life. I have seen the save the 90 year old way to much. As the newer doctors come out, the conversations are starting sooner. I personnally want to tattoo DNR on my chest! lol No seriously, it is a choice and no one will live forever. Just look at what we see everyday and realize that we all have a choice.
I wish I would have found this article when it was written–or even more, had information like this a couple of months before my mother’s cancer went terminal. She was an Registered Nurse that worked nursing home for the most of her career, and knew better, but just didn’t know how to communicate this information with the family. Being Southern and not one to be open with many things, this situation could have played out better. I lived over 2,000 miles away, so I missed even more about her progress–or lack thereof. She was given a month or two at most to live almost a month before I was told of her condition. I put my life on hold and really took a huge financial blow to come see her, and subsequently take care of her; filling in the gaps hospice left. She had an older sister that lived about three miles away, but turned out to be surprisingly useless, leaving me to bare it all.
When things finally turned really ugly a few months, this article really would have helped. She, and the family, didn’t want her to suffer any greater than she had, but we kept getting pushed and mislead to think certain measures were to reduce suffering, but were probably contributing to her month-long decent into a ultimate “humane” suffering death. I was prepared to give her a lethal dose of morphine after a series of strokes left her unable to communicate, but I was worried about causing any increased suffering. I had been trained to kill in any ways possible in the military, but the slightest chance I could cause a more prolonged or pain death keep me from acting. I tried researching the information I needed, but I couldn’t find anyone of qualification that was willing to state definitive information. No one foresaw my mom going on for weeks in the state she was in, so the risk to step in never seemed to be worth it. When hospice over-rided my attempt to ration the best course of action after she lost the ability to eat, drink and take pain medication and made the call for me to move he into the hospital, I should have stepped in to end it for her. It turned out she suffered so much more at the hands of “experts”. I should have continued with suing the hospital and hospice for how they handled everything, but dealing the fallout of everything and the caos my life would be following her death, overshadowed the disciplinary actions that were needed (it wasn’t about money, but awareness for incompetents and being held accountable as professionals–any money gained would have been donated to cancer research). After weeks of not leaving her side for more than minutes, the day she died, I was going to take matters into my own hands. She finally died as I was digging out the left over liquid morphine she had from the final days at home.
No suffering I’ve seen from war or life in general has come close to what I witnessed with my mother’s cancer. I thought my grandfather’s stroke driven death was awful; it looks now short and humane by comparison. Her death certificate said the cause of death was cancer, but I know it was dehydration and malnutrition. Only the worst of the worst humans deserve such a death. The supposed death of Jesus had nothing on this. I was an agnostic before this, but now I am a certain atheist. No person with compassion and the ability to prevent such suffer could allow it without ignoring what’s really happening or they are truly an awful person.
This article, and the attached comments, resonate deeply with me. I am “just” a staff occupational therapist at a 48 bed dedicated short-term rehab center (not a nursing home /SNF). I began keeping a log of the number of deaths we had each year – it has been 20-25 per yr since we opened 3 yrs ago. The mortality rate is astonishingly high. Why? Because hospitals are discharging patients to “rehab” who should be on palliative care, giving the message to these pts (more accurately their families) that there is hope for full recovery. Most (perhaps all) of these patients arrive with a very poor understanding of their condition. A few families have chosen to withold from their loved one their diagnosis – even if the patient is competent – because they say this information will “depress them”. Most families I have encountered have indicated time and time again that no one has spoken to them about care options aside from going to rehab. They have no interest in hearing our rehab attending physicians discuss their condition, because these doctors are not their PCPs. I have had patients leave for appointments withe their ONCOLOGISTS and they come back saying ‘my doctos says I am doing great” when clearly they appear very close to death. Meanwhile, our rehab supervisor instructs the therapists to treat these patients for a few hours a day to maximize our facility’s reimbursement. The more minutes spent with them, the more money given to the facility by their insurance carrier (typically Medicare). I watch patients in their last days of life being dragged down the hall to “walk” or exercise. As a matter of personal principle, I refuse to add to their suffering and focus my treatment on positioning and comfort, helping them be clean and providing socialization and companionship. When a patient requests not to participate, i respect their wishes. My facility policy is that the therapist has to attempt treatment 3x before you can accept their refusal. And nearly every patient has 3 different therapists per day (PT OT Speech). My non-aggressive approach has not endeared myself to the facility administration. I cannot begin to tell you how many times I have been yelled at, condescended to, and harshly questioned by the families of these patients who feel that I am responsible for their family member not recovering. That their declining family member is a result of my not being a competent therapist. Meanwhile, I have been honored nearly every month by being elected a candidate for Employee of the Month – votes are from fellow staff members and patients/ families. I am an excellent therapist who cannot reconcile the cognitive dissonance of observing patients who could enjoy a peaceful end of life with the silence of a medical community who are unwilling to be honest with their patients and their families. Again, I have to emphasize that the expectations of these families are that if their parent/sister etc are sent to a REHAB than this equates to them that the MD/ hospital feels this is the most appropriate setting for their loved one. I agree with one of the comments which stated that hospice should be referred to as “comfort care” – a neutral term that everyone can understand. And ethics dictate that all patients (and their families) be given full disclosure and honest information by their medical providers. This does not just mean answering questions about end-of-life IF ASKED by their patients/families but to be upfront and provided as a matter of policy to each and every patient that comes through their door. The system as it stands now is flawed and each of us on the front line has observed this with heavy hearts.
Laura – thank you. My father did that horrible end of life dance: hospital stay, followed by 30 days (medicaid paid for) rehab, home for one week, back to the hospital, 30 days rehab (at a different facility), back to the hospital. We finally found a place designed to deal with elderly patients with dementia. He died a week later, but more comfortable, and with family nearby. The last three months of his life were some of the worst and I wish I’d done something differently. Very much appreciate the therapists he worked for which were generally lovely people, but hope I’m not doing rehab strength building exercises the week before my death.
I see this from two perspectives: as a pastor, who is often present in hospitals when families/patients are making critical decisions, and as the wife/caregiver of a man dying from a progressive, degenerative neurological disorder. Most times–MOST times–I’ve witnessed physicians convince family members to do whatever can be done to extend life. Unless a palliative care specialist is involved, I’ve seen 90+ year olds put through cancer surgery and chemo, G tubes, tracheostomies, and a host of other invasive, painful procedures. I was in a room where a nurse cried as she tried to draw blood from a man who screamed in agony as his seeping flesh tore loose–and this was after Hospice had been called and his daughter had been told his death would come in hours. Why did his doctor order a blood test? Doctors tell families/patients what “can” be done, often dispassionately, without talking about the quality of the life being extended. For fear of legal action or not wanting to admit the limits of his/her abilities, or other unfathomable reasons, I’ve rarely heard a doctor explain what these extreme measures mean.
My husband’s condition is irreversible; the only “treatment” is controlling his symptoms to improve his quality of life, but I read Facebook posts about cutting the “waste” in Medicare, knowing they are talking about my husband–his care costs a fortune (I will probably lose my home after he dies). Well-meaning libertarians say it’s up to churches and charities to pay for those who can’t afford care: my entire yearly salary wouldn’t cover my husband’s medical costs. All the while I am told by his doctors that he needs physical therapy, speech therapy, occupational therapy. When I say, “we can’t afford those things,” the answer is “but he needs them.” Do you know how that makes me feel?
I’m sorry, but I think most of the responsibility belongs to physicians. Life is finite. Be as brutally honest with your patients as the author of this piece. Don’t develop a hero or messianic complex (trust me, I know what it’s like when people expect you to always have the right answer–who think you’re something more than human). Explain what these choices mean. When my father was urged by his mother’s doctor to give permission to insert a feeding tube–when she was 99–and told, “if you don’t do this, your mother will starve,” I fought them both to let her go. My father still bears guilt over that decision.
God bless Hospice and palliative care givers and physicians. I wish all physicians would learn from them.
Frankly I thought the article in it’s basic content and message is outstanding. I don’t really care about the particulars I care about dying with some dignity and letting nature and God take me back from whence I came. At the age of 57 and having had multiple heart surgery, back surgery, C-sections in order to have children and living every single night and day in pain, well I am ready to go because for me my body is only a vehicle. The true essence of who I am lives forever so death is not an end but a different beginning. Let me go from one to the other with class and celebration. My family knows and the papers I carry with me at all times say DNR. I will not stay one minute less nor one minute more than what has been written in the “plan”, so I dare say that anything to the contrary will make much difference. Death is a transition and not to be feared. What is frightening is what people do to keep you from it! Including family. I am ready for the next adventure!
I’ve read a lot of articles like this. The thing they all have in common is that the writer will give a scary list of worst case scenarios. Rarely do we hear about the patient who gets care (excessive or not) and who lives and has a reasonable life afterward (by their own definition, not healthcare staff members’). I signed a DNR for my mother 4 1/2 years ago–at the urging of doctors–and she survived and is still alive today.
She became conscious again and when I asked her what she wanted, she said she wanted to live. That’s when MY nightmare began. I was confronted by medical professionals with the attitude of the writer above. Getting my mother any care became almost impossible because everything was seen as “excessive”.
I resent the characterization of the families in this article. Not all of us are hysterical and unprepared. Most of us are reasonable, if a little surprised by events. That does not mean we are incapable of making choices. The problem is that we rarely get to make “informed” choices because the doctors, like this writer, make decisions for us by not sharing all the information. It’s patronizing and distressing. These people are not equipped to play God — they seem to see people as products on an assembly line. I’ve written about my experience here:
I am so sorry that this has been your experience. I must say that as an RN in acute care I have watched (at least from the hospital staff, MD’s & DCP’s) honor the families wishes. I am proud to say that we understand that we never know what cultural idiosyncrasies might resides within a family. I’m glad to know you were strong enough to stick to your guns. I’m sorry for those who don’t know how to navigate this system when they don’t receive proper support.
I hit submit too fast. I am proud to say that we understand that we never know what cultural idiosyncrasies might resides within a family and we defer that the family and honor their wishes.
I agree with the basis of this article. In that with a cancer that is advanced with no hope of remission and that only painful treatments would gain very little time. I understand that a physician in the know would opt out of treatment. I also relate to the fear of patients and their families as I have witnessed. Of their going much to far to sustain life, in their ignorance of having past the point of no return and the suffering of their loved one. They seem to not hear the doctor or nurse telling them that its time to let their loved one go.
I do however take exception to what I consider dangerous “advise” , perpetuating bystanders to do even less when you discuss CPR. You refer to a man who walked out of the ED after receiving CPR inappropriately. What harm was done? Yes, it was in appropriate. It did not threaten his life. Broken ribs heal. Encourage people to administer CPR. Teach a course in proper CPR. Fix the system. Don’t tell people to stop please.
I also take exception to the implication that MD’s or other practitioner’s would tattoo a NO CODE on themselves as if they would have no CPR under ANY circumstances. This would be an incredibly drastic measure. A healthy individual would not take this action.
I feel as if you are seeing things from a tiny hole in your ED and not getting any perspective from outside of it. Please have a look around and consider your actions when you write such detrimental words. Honestly, I appreciated the way your article began. I wish you had stuck to your original point to educate others on the length we go to keep people alive (sometimes too long) in our medical system.
Ken, Your article moved me. It is a much more elegant explanation than I could have provided regarding my own beliefs about end-of-life and/or futile care. As a primary care physician who has witnesses the tragic loss of dignity in dying over and over again, we seem to be on the exact same wavelength on this issue. Thanks for sharing.
It will be interesting to read if anyone attacks this post. “What, doctors won’t practice what they preach!?” Or, is it really about doctors are afraid to be frank and direct with people? Or, is it this culture doesn’t think that death applies to people who live in an advanced society.
Personally , the more advanced people seem to think they are getting, the more regressive and primitive they seem to think and act in the end.
I like this post. But, reality is not want people want at this site, eh?
The author does not cite a lot of data to support his assertion, but it certainly rings true for me. It also tends to extend out to their families. I think a lot of it is that we actually talk for and plan fro what we want at the end of life. Most people dont think about it until it happens.
I did a talk on end of life issues and spent quite a bit of time looking up the data on the use of DNR, whether they are followed, and results. Found out that over 50% of families, in one study, went against the patient’s wishes for Do Not Resuscitate. Doctors tend,for the most part, to follow them. While most medical people (doctors, nurses, care givers in general) tend to prefer DNR status for themselves, some, still prefer the do everything school of thought. Doctors, with dementia, in one study wanted more done, even when they know (or knew) that medical science does not have the tool they wish. However, doctors, in general, (except nephrologists) are not good about making sure their patient’s know about advance directives and the DNR status. This talk, according to studies, should begin when patient’s are young and healthy!
That’s oversimplifying it a bit but it gets to the point how the research I have seen conducted on how patients view this – ‘as literally as long as I have a chance I will do it.’
Personally, I would not go thorough some kind of intensive medical intervention with dramatic side effects if it just increased my chances marginally of living another say 6 months with a horrendous quality of life. I would imagine I am outlier among the general public though.
A great and poignant piece… Difficult decisions are usually involved. When I was a resident, I typically ran “soft” codes, for those who can understand this med lingo. Hated the hour-long flogs that more aggressive residents would force. They were truly beating dead horses.
Not at all. I too, like most of my similarly minded residents, would run those soft codes for families who were not ready so that they may see that we were making an effort, but what that patient was going through. They almost, universally, resulted in families making decisions to stop resuscitative efforts and allow patients to pass in peace.
With the advent of indifference by our colleagues as they spend more time with the computer electronics ordering and less time with the patients, I will sooner die than go into the hospital to have my cancer governed by Medicare, point and click treatments, and cut and paste progress notes which no one has time to read except for the payors.
Certainly not what I see with our oncologists or oncology surgeons. I have talked with our guys and Medicare does not dictate care. It does not in my field. What cancer care does Medicare dictate where you live?
Medicare dictated care is just plain absurd. Hospitals will do everything when you are hospitalized. If medicare does not cover, than good luck paying the bill yourself!
This post rang true on a very personal level. During my early years in practice, I took a measure of pride in the fact that I never “lost” a patient in critical care situations…youthful hubris. In the years before leaving the ER for business, I felt guilt for the same outcomes…those “outcomes” being “saves” I wouldn’t have wished for myself, my friends, or my family. This post spoke to my feelings on the matter in a way I’ve never been able to voice.
The doctor for whom I work will die from aggravation from knowing her patients have died due to flawed EHRs and CPOEs and know one seems to care. How could these dangerous devices be used for medical care without any oversight? Terrible!!
I will make it short as compared to many of the others. I spend hours everyday reviewing articles and posting within our profession everyday. The boring part of being a research. This Dr. Murray, this is one of the most insightful and well thoughout articles I have ever read. Some may disagree, but it is rare that a healthcare professional actually describes what many feel.
I feel as though the author tangentially hit on this point, but did not elaborate. And that is many times doctors and researchers (sometimes they are the same) often try to convince patients to fight as long as possible or recommend a course of treatment they know may not be best simply for data. There was a play (and later a movie I believe) that did a great job on this topic, called Wit. At what point does a patient stop becoming a person and start becoming an experiment. The output being data rather than quality of life.
Thoughtprovoking – I feel should at least get people to thinking about end-of-life-decisions. However, too much emphasis on decision making in the ER. I don’t think it unreasonable for a family to “do everything” in the moment when a person is unexpectedly unconscious – their family member may be the one who survives. But when futility becomes apparent, I agree health care providers need to more strongly counsel toward comfort care. Example: my father-in-law fell down a flight of stairs and was unresponsive at the scene. CPR/defibrillation used and he was transported to the local trauma center. Over the next 24 hours as test results came in, it became apparent he had a C2 spinal cord injury as well as hypoxic injury from down time. Our family elected to institute comfort care measures, he was extubated and died within minutes surrounded by family.
What a terrific article – very thoughtprovoking – would like to share my thoughts/experience regarding healthcare in Denmark (socialized medicare) where I was born and raised.
As a society,we are in the Dark Ages when it comes to end of life care and it is bankrupting our healthcare system. As an an ER doc for 34 years being “forced”to resusitate patients at the insistence of family members or because there was no available advanced directive is very frustrating on many levels. In many situations,it is a cultural/religious issue and in those instances,the informed advice of a compassionate physician doesn’t trump orthodoxy.People are absolutely entitled to their beliefs and I (and my MD colleagues) will always honor their wishes. But should we as a society pay for futile care to satisfy someone’s religious belief ? I know it sounds cynical,but every ER doc knows that if Billy wants “everything ” done to save his 89 year old demented,bedridden,tubed dear Dad, but had to pay for it,he might find a new religion.
Dr. Schwarzaman, you just gave me an idea. It’s not politically or socially feasible but I’ll float it anyway—
Medical professionals are not obliged to participate in an abortion if they claim a religious objection. Some religious faiths refuse to allow blood transfusions and (except for minors) that objection is honored without legal consequences. What would be the consequences of a physician (or any other medical professional) allowing life to come to a natural end, without heroic interventions, citing personal religious beliefs? I’m thinking of your example above. Passively allowing nature to take its course is surely not the same as assisted suicide or manslaughter. Or are doctors held to a different standard from other professionals?
This was a wonderful and courageous piece. I really appreciate this kind of honesty from a Doctor. When I was young, 50 years ago, I wanted to be a doctor, like Dr. Kildare or Ben Casey. So did my mother. In high school I was president of the Medical Club, and enter U.C. Berkeley as Pre-Med. Chemistry 1-A did me in, and I changed my major after one semester. All my life I was taught to respect doctors. But about seven years ago, while spending every day with my mother in the hospital, my eyes were opened. The system, the attitudes, the lack of awareness, the money, the pressures, etc., I believe, have made the health care system much less than it was intended to be. At the same time I learned about the value of Nutritional Supplements, diet, and exercise as a way to turn things around in my own case, and take control of my own health. I also learned of the risks in blindly following what doctors and hospitals tell us. I will listen, but I will question every little thing. I will read every label and decide for myself. My medical care is 100% my responsibility. Its my body. If I can learn I will. But I am very sensitive to anything a doctor or nurse tells me. I believe it is time for a major revolution in the way we train doctors and educate people about how to take care of themselves. The Doctor patient relationship should be more like a partnership, that a parent-child, or master-servant relationship. Patients have every right to question doctors. They should never be forced to stay in a hospital. When the risks of negligence and adverse drug side effects are worse than the symptoms…. beware. Patients must become more proactive, and doctors need to be models of good health. Doctors should not be allowed to become obese or smoke. If they do, they should be put on suspension or retrained. And the medical training itself should change. It makes a ridiculous statement about their ability to care for another, if doctors abuse their own bodies. Doctors should spend 80% of their time on prevention and educating their patient. They should be paid more to keep the patient healthy, than to try and cure him when he becomes ill. The whole system should be turned around. Maybe then doctors will be healthier and live longer and they can be models for us all to live healthier lives. That’s the ideal mission for a doctor…. a role model and a health counselor.
Nice to know that you think doctors need to be perfect to be doctors. And what do you do for a living? AND, more importantly, are you perfect at practicing what you preach?????
Or maybe people should care for themselves from the beginning instead of orbiting doctors for years and then expecting a miracle cute when it’s too late. Doctors are not God, they are human and most aste doing the best they can with a non compliant society.
We should all have such a close relationship with our care-givers that we could have the confidence and trust in the exchange at these critical moments of our lives. I’m sure our care givers would want such trust and confidence with their patients when the time comes for that honest and caring exchange. It does make me long for the family doctor who visited us at home when I was a kid, who knew our whole family, and lived in our community.
I’d love to see it as a book exploring the range of scenarios and daring to tease out the policy conundrum.
The latter is the challenge to ensuring all of us the benefit of such a relationship, the protection from ill-advised care or outright mistakes, and the protection of providers trying to do what’s best for and wanted by their patients.
We could use a comprehensive exploration of the entire process, one that examines the economic, legal, medical, and ethical issues along side of the real human life-death personal side you present here.
I don’t see a simple answer but know the conversation must include all of these aspects and perhaps the solutions tried on a less risky and inflammatory stage than the one we’re trying to hammer it all out on now, the national policy and federal legislation one. This one can’t handle the intensely complex array of issues that come into play.
I’d also like to see the dialog begin with the bedside scene you present, with the players involved including the families and build into the policy level rather than the other way around, hoping that the human side will sort itself out after the fact.
i recall the author of the All Creatures Great and Small series and all the “good cows pulling on their hay” and horses and sheep and such he saved because he was willing to do surgery and “get paid when i catch up” and if he didnt do it they would have sent 4 the knacker man (butcher) and that his babies were born at a midwife’s house (being a surgeon he kept his expectant wife away from hospital) and that he died peacefully at home from prostate cancer~i can honestly say if i were a man i would prefer to die peacefully at home and having seen Wit with the amazing Emma Thompson (nanny mcphee) i can say she did more to promote hospice and death with dignity than any actress of the 20th century:)
Thanks for being a voice of reason, at a time when loved ones are scared and ill-equipped to ask the right questions. We should all have more information to make the kinds of sensible end-of-life decisions you speak of.
This is so true..I work as an RN in an Interventional Radiology Suite..you would not believe the procedures we do on terminaally ill pateints..biliary stents…nephrostomy tubes…feeding tubes…its absolutely ridiculous..we are currently scheduling a terminally ill man with colon cancer for ureteral stents…when will the madness stop and let people enjoy whats rest of thir lives and preserve their dignity..I am all for if I am terminal..leave me the hell alone!
Thank you very much for writing this article. I’ve been in these circumstances many a times. I agree with Larry “it is rare that a healthcare professional actually describes what many feel.” This post resonates with the feelings that I underwent as an ERDoc!
interesting article, thanks for posting. Quite depressing though
The article lacks any sort of data, however. Also, in all honesty, although I do personally know someone who survived it by miracle, this Doc gives the example of pancreatic cancer. The truth is that pancreatic cancer is a whole other reality compared to say prostate cancer. Many serious diseases can be beat in many cases so why shouldn’t we fight?
It’s also an issue of age and requirements. My sister in law died last year. She was told she had stage 4 breast cancer ten years ago and was immediately handed a hospice card and told she had months. Imagine that. She fought like a warrior for 10 years and in the process, because of treatment (radiation and chemo) lost almost her quality of life including going blind. This decline in quality of life was a process however with things really getting bad her last 12-18 months. When i spoke to her about 4 years ago, before I got sick, with tears in her eyes, she told me that she had to fight to so that she could be there for her kids as long as possible and to try and do as much as she could as a mother to growing children. Her doctors and her pastor constantly said that it was her fighting spirit that gave her, and by consequence her kids, more years. Her kids were so young when she got sick that in the end they knew nothing but a sick mother. But she still went to all their sport events, all their school events, took them to church, spent ten birthdays, Christmases and Thanks Givings with them and so on. They now have traditions their mother set and many memories of her including mostly good memories.
Sometimes people in my age bracket have no choice but to fight hard and not because of what we need but because of what we perceive around us and what we feel responsible for. Getting seriously sick at our age is a different ball game in how we might react to it. I don’t think most of us in my age bracket have the luxury or desire to react as the doctor in the article.
I found nothing in this essay suggesting that this doctor’s choices become normative for everyone. The idea of “choice” was underscored repeatedly. Some may find the notion of dying depressing. Others looking at an expensive course of painful options ending in death may find it liberating. Here is a link to a short story by an oncologist who knows the difference and how best to lead his patients to an informed choice.
I don’t think the guy is saying all people should just give up. I think you missed the point. It seemed clear to me, that when it makes sense to just accept that your time is near, you might end up with better quality of life than looking at a toilet and throwing up for 3 months and then dying. Of course everything is situational based on each person’s circumstances. I LOVED the article and hope that the idea that if Doctors tend to NOT put themselves through a lot of the crap that other patients go through, then people might be more likely to look at things through more realistic eyes. Great Article.
This says a lot about our education system as well. We’re content to turn out graduates who have enough “basic skills” to get by, but have no idea how their own bodies work, or how to think about their relationship with medical science. Instead they get their knowledge and attitudes from TV, and we wonder why they can’t make rational decisions about end-of-life care. We would do better with a more practical life model: being alive means we’re all going to experience sickness, old age and death. Nobody has ever been saved from this situation. Acceptance of this reality would go some way towards helping people understand their own priorities.
Thanks for a thought-provoking article, Dr Murray.
HIghly thought provoking for me as Pulmonologist/Intensivist…we face this on a daily basis…drawing fine lines between aggressive and palliative cares. If there are clear directives then it becomes easy to counsel. But if it is vague..few people have the courage to firmly say that futile care should not be provided or continued. Everyone should clearly state their wishes for end of life care as they age. No one needs to die in misery if they don’t have to.
I had a POA and living will drawn up when I turned 40 for these very reasons. It’s not that I have a death wish but I fear the misery more than dying. That said I found lunasin and Reliv. My health has improved dramatically and my doctor has taken me off of almost all of the prescriptions that plagued my life. I got healthy and now enjoy a full and probably long life. Robin Leigh…author of Dear Daddy…WestBow press.
Well said and well written. This describes so many of my experiences of working in the ICU and ER. I still look back and wonder if we did the right thing.
Dr. Murray, thank you very much for writing this article! I am myself a physician,though currently working in a RN capacity. The article really” hit home” because it reflects with an extreme accuracy my way of thinking on this subject. I am very happy to know that I am not alone and that there are other physicians out there who think the same way.
Some truth here. Too much care happens often. However, this article has a couple of anecdotal accounts as supporting evidence. That’s not very strong. I could find 1000′s of anecdotal reports where some extra chemotherapy or radiation gave patients a little longer to live in good quality and spend that extra time with their families. And, I’m sure there are stories of people who initially want to do nothing having some complication that could have been avoided had they done an extra measure. It’s not all as clear cut as this article makes it out to be.
One thing is not mentioned here. Doctors have no problem getting as much powerful pain relief drugs as they want, but the rest of us (unless wealthy) do – the medical profession seems unreasonably anal when it comes to prescribing effective pain relief. When they express concern about the fact that they might be addictive for a terminally ill patient, all you can do is just shake your head …
An answer to this issue exists: A validated program from a Wisconsin hospital sustem that gets outpatients to fill out polsts, improves pt satisfaction and saves money: respectingchoices.org
If you are interested in makong change, they can help you pilot a program at your institution.
Lets educate ourselves as providers so that we may better serve our patients. Here is a site w 1 page fast facts w evidence based knowledge on pall care topics, like prognosis after acls. While financial incentives are perverse, the providers interested in proffessional and ethical care will want to know existing data and act accordingly: http://www.eperc.mcw.edu/EPERC
I am grateful for this discussion, as I think we can serve our patients and ourselves far better when it comes to end of life care.
Fantastic article. After many years of nursing, I have never envied an MD’s task of being the “messenger.” But, I do make a point to be present in MD/family conferences, so that I may later translate and reiterate the information.
“How has it come to this—that doctors administer so much care that they wouldn’t want for themselves?”
Let’s not forget the “ancillary” staff involved. Where I work, it’s the RNs who poke, prod, and generally create suffering in the name of healing for 8-12 hours per day, who have high rates of burnout and “vicarious traumatization.” It’s the RTs who turn off the vent and take out the tube; it’s the OTs who stretch and bend painfully stiff limbs; and again, it’s the RNs who are first in line for patient advocacy, but are sometimes the last to be heard. There is nothing as trying as hearing a family member say “he wouldn’t want this I know it,” but then see said family flip a 180 when the white coat walks into the room. Ask any ICU RN about their wishes; you’d find an answer just like Charlie’s or Torch’s.
Thank you, Ken, for your perspective, and your amazing essay. It is refreshing to hear it from a “white coat” (all respect intended.)
NicholeICURN, you said that perfectly. As much as I appreciate this article-and I do-the only reference to a nurse has a negative slant. Sometimes the entire healthcare team would strongly support the decision to “pull the plug” on a patient, but are at odds with a family who, for whatever reason (and often I think the reason is that they are incapable of seeing things as we do, because they have not had our experiences) and is unwilling to let go. It is the nurses who must provide the futile care to the body, even if it is morally distressing for them to do so. It is nurses who provide and coordinate hospice care, with much more autonomy than nurses have in the hospital setting, and the mission of hospice care is to make dying as humane a process as possible. I also wonder, if so many doctors feel this way, why are things as they are? Doctors may hope for themselves to go gently into that good night, but I’m skeptical that it is always what they want for their patients. It would be very difficult for an oncologist, I would think, to go to work each day with the mindset that they were going to just diagnose and send most of their patients home to die. They want to treat their patients. They want to find cures. We all want to hope that people will recover even when the odds are not great. And if patients die, does that not on at least some level feel like a personal failure? I think most physicians are motivated to try their hardest to cure their patients rather than just let them die. Nurses have always had a focus on quality of life and death issues, so it seems inappropriate to leave them out of the discussion entirely. Great article!
I have been a hospice nurse for the past 12 years. I have seen both sides aggressive treatment and no treatment, patients and families are more prepared and equiped to deal with death with no treatment, why, they have had quality time not quanity. Aggressive treated patients and families are over whelmed due to the side effects of treatment(s). Aggressive treated patients have run to appointments, suffered through the treatments, increased medications to deal with side effects of treatments and the caregivers have been that, caregivers, not parents, wives, husbands or children. Many patients have stated had they known how it would turn out they would have taken quality over quanity, why, because quanity rob them of relationships and good days. Those whom chose quality have expressed good comments for the time they were able to continue being part of a family, the good days they were able to share. They have commented they knew the time was shorter but it was better without all the medical treatments replacing memories they were able to leave their family. I lost a dear friend last year to breast cancer, her family had her to chemo the day she died. She had a heart attack while receiving chemo in the name of longer life, possible cure, her sons last memories are not what they could have been…society needs more education because the sad fact is…if the aggressive treatment doesn’t cure you, it makes you wish you were dead.
This article should help all of us to think more deeply about the kinds of care we want at the end of our lives. We do not have a choice between dying and not dying. Rather we have the choice between dying one day rather than another. See my free on-line book: How to Die: Safeguards for Life-Ending Decisions:http://www.tc.umn.edu/~parkx032/HTD.html
Just a little note to express my support for the practice of CPR. My 63 year old Dad collapsed on a tennis court during his first match in the Senior’s Games in St George, Utah in 2010. His match partner and a player from another court administered CPR for approximately 15 minutes before the ambulance arrived (no AED on site, unfortunately). He was stabilized at the hospital and had 6 bypasses performed 2 days later. Without the critical interventions performed by the medical staff, he would be gone today. Instead, he’s back skiing, golfing, and even playing tennis in the same tournament again this year. He’s the best grandpa ever, and I don’t know what we’d have done if those first critical responders hadn’t performed CPR. We are Canadian and were completely overcome at the high quality of care he received in the US. Thank goodness for insurance. Wonderful article.
A.K Guy: this article is not about a person who is in an acute trama, that needs live saving resusitation to reverse that trama. This article refers to persons who’s expected outcomes are poor at best. (Let me preface this by saying that, i am thankful for you and your family that your dad recovered and is doing great! ) But if your dad’s outcome was poor, if the best he could hav hoped for was living as a shell of who he was, having to be cared for 24/7, in contant pain, unable to feed himself or even eat food at all. to urinate and deficate on himself, to loose control of any decisions for the coarse of his life, and suffer this way for days, months or years, would HE want that for himself. This is what the article is about. It breaks my heart daily to see these type of patients and be forced to participate in the torture they must endure because either they or their family have no idea what is in store for them. I pray for each one of them to find peace, comfort and acceptance.
I think I understood the article quite well, thank you, and I would argue that my father’s expected outcome on the tennis court, in the ambulance, and after arriving at the hospital was probably quite poor. Since it didn’t end up that way, we are extremely lucky. He would not have wanted to continue a life without quality, of course, but our consent to the procedures that did have good outcomes were informed mostly by hope, as we were aware of the chances. He did have a few broken ribs and a painful road back to health, but if you ask him. he’ll tell you that it was worth it.
I think you’re still missing the important distinction between the futile resuscitation of a person with a known progressive and incurable illness such as metastatic pancreatic cancer, and a potentially reversible illness such as coronary artery disease, which, even though it may be severe, can still result in a good outcome.
This article addresses the former category; your father was in the latter group. That’s the difference between “medically completely incurable” and “critical but still potentially reversible” illness.
Amen to this…..let me spend my final days floating in the ocean, peering down through my mask at the wonders around me and, hopefully with some dolphins passing by. Let me enjoy the warm sunshine and let my ashes be contained in an artificial reef base to help replenish the those reefs that I love so well!!!
Having spent almost two decades covering bioethical issues for two of the nation’s leading newspapers, and having reported extensively on issues related to death and dying – from Quinlan through Kevorkian, I don’t doubt that there is some truth in what this author reports. However, I have to ask – where’s your data? Stories friends tell us are folklore, not facts.
I wonder what you mean by “bureaucrat run healthcare?” Surely you aren’t using that as a euphemism for government run health care, because we’ve had “bureaucrat run health care” ever since the wide spread introduction of employer-based health insurance after World War II. Private bureaucrats, whose only motive is improving their financial status and that of their executives and investors, have run our health care system. Perhaps it’s time to give government bureaucrats a chance to run it – for everyone. They can’t possibly be as bad as the private bureaucrats. After all, Medicare has far lower overhead costs than private insurers, and most Medicare beneficiaries are pleased with Medicare.
As a retired RN, who has worked with adults and children with cancer, I often tell and have told my fellow health care workers, that I will not seek intervention and will focus on quality time with friends and family. I have watched so many parent and patients fight to last minute, but the one dying is left suffer to meet the needs of the living. Sometimes, too, its the fault of the MD who leads them on, and is too egotistical to tell the truth, that he can not save them from the inevitable. I prefer to got out like a dance and as I run ..finishing with a smile on my face. I may need pain meds to smooth my way out , but I have no desire to support the pharmaceutical companies or corporate sickness care.
Thank you to Dr. Ken Murray for writing this article. It is so long overdue. Well stated, level-headed, and sincere, he expressed what we all want to say about our medical system and our life and philosophy as physicians. Will spread it around. Adrien Melikian, MD
Dr. Murray, Thank you for putting on paper what most Long term Care Nurses want to say to family members. I cannot begin to tell you how many times I have witnessed residents being kept alive by family members, only to watch the resident suffer. I really wish there was a way to explain to family members what exactly they are putting their loved one through. Sometimes I find the family members are not ready to let go of their loved one and that they are keeping their loved one alive for themself. As an RN with almost 20 years experience in Long Term Care (LTC) I feel as though, since I cannot educate a Alzheimer/Dementia/ MR or unconscious resident; our society leave these decision up to the resident’s family members that determine when to say enough is enough. Unfortunately even when LTC residents have advanced directives and Living wills; many times facilities and MD’s will err on the side of the families’ wishes; especially with a confused resident; as the world ever so progresses into a sue happy society, MD’s, medical practioners and nurses are forced to err on the side of caution. Great article, now if only we could get long term care (TLC) residents and family members to read it and get them some education perhaps the Medicare System would not be in the dire straights it is now. I know that sounds harsh, but I am a firm believer in advocating for my residents and following their advanced directives/ living wills and honoring their wishes. It is So, So hard to sit back and watch as some families make poor choices for their loved ones and feel helpless (Nurses get sued too) because we have to be very cautious on how much and what we say. CPR is another story, as one gentleman stated above, it does save a few lives, this is why medical professionals are trained and perform it. However, a 63 year old man verses a 95 year old with co-morbidities and no quality of life is another story. I see it daily, it is heart breaking. I learned early on in my profession, especially working with the elderly, that these LTC residents know when they are tired of living and know when they are ready to reconnect with their loved ones in Heaven. They have told me, many times: “Deb I’ve lived my life, I am tired, I am tired of not feeling well and I am tired of living”, and these are not Depression patients). I only wish they would tell their families this, they WON’T. Why:. because they fight to stay alive, not for themself,but for ther iloved ones….. Thank you once again for this article, unfortunately I don’t believe the information will get to the people that really need this education; the patients (residents) and the family members. Sincerely, D. Mesick, RN, BSN
Life is precious and is about quality not quantity.
I hope you are not a doctor, Chris.
I am ready for the next adventure!
Your article moved me. It is a much more elegant explanation than I could have provided regarding my own beliefs about end-of-life and/or futile care. As a primary care physician who has witnesses the tragic loss of dignity in dying over and over again, we seem to be on the exact same wavelength on this issue. Thanks for sharing.
http://www.newshoggers.com/blog/2011/12/hcr-how-doctors-die.html
Some religious faiths refuse to allow blood transfusions and (except for minors) that objection is honored without legal consequences.
What would be the consequences of a physician (or any other medical professional) allowing life to come to a natural end, without heroic interventions, citing personal religious beliefs? I’m thinking of your example above.
Passively allowing nature to take its course is surely not the same as assisted suicide or manslaughter. Or are doctors held to a different standard from other professionals?
All my life I was taught to respect doctors. But about seven years ago, while spending every day with my mother in the hospital, my eyes were opened. The system, the attitudes, the lack of awareness, the money, the pressures, etc., I believe, have made the health care system much less than it was intended to be.
At the same time I learned about the value of Nutritional Supplements, diet, and exercise as a way to turn things around in my own case, and take control of my own health. I also learned of the risks in blindly following what doctors and hospitals tell us. I will listen, but I will question every little thing. I will read every label and decide for myself. My medical care is 100% my responsibility. Its my body. If I can learn I will. But I am very sensitive to anything a doctor or nurse tells me.
I believe it is time for a major revolution in the way we train doctors and educate people about how to take care of themselves. The Doctor patient relationship should be more like a partnership, that a parent-child, or master-servant relationship. Patients have every right to question doctors. They should never be forced to stay in a hospital. When the risks of negligence and adverse drug side effects are worse than the symptoms…. beware. Patients must become more proactive, and doctors need to be models of good health. Doctors should not be allowed to become obese or smoke. If they do, they should be put on suspension or retrained. And the medical training itself should change. It makes a ridiculous statement about their ability to care for another, if doctors abuse their own bodies. Doctors should spend 80% of their time on prevention and educating their patient. They should be paid more to keep the patient healthy, than to try and cure him when he becomes ill. The whole system should be turned around. Maybe then doctors will be healthier and live longer and they can be models for us all to live healthier lives. That’s the ideal mission for a doctor…. a role model and a health counselor.
Thanks for your contribution and I will use it for my school research that I am doing for this website.
If there are clear directives then it becomes easy to counsel. But if it is vague..few people have the courage to firmly say that futile care should not be provided or continued. Everyone should clearly state their wishes for end of life care as they age. No one needs to die in misery if they don’t have to.
respectingchoices.org
http://www.eperc.mcw.edu/EPERC
I also wonder, if so many doctors feel this way, why are things as they are? Doctors may hope for themselves to go gently into that good night, but I’m skeptical that it is always what they want for their patients. It would be very difficult for an oncologist, I would think, to go to work each day with the mindset that they were going to just diagnose and send most of their patients home to die. They want to treat their patients. They want to find cures. We all want to hope that people will recover even when the odds are not great. And if patients die, does that not on at least some level feel like a personal failure? I think most physicians are motivated to try their hardest to cure their patients rather than just let them die. Nurses have always had a focus on quality of life and death issues, so it seems inappropriate to leave them out of the discussion entirely.
Great article!
We are Canadian and were completely overcome at the high quality of care he received in the US. Thank goodness for insurance.
Wonderful article.
just
a
high school teacher
Adrien Melikian, MD
Thank you for putting on paper what most Long term Care Nurses want to say to family members. I cannot begin to tell you how many times I have witnessed residents being kept alive by family members, only to watch the resident suffer. I really wish there was a way to explain to family members what exactly they are putting their loved one through. Sometimes I find the family members are not ready to let go of their loved one and that they are keeping their loved one alive for themself. As an RN with almost 20 years experience in Long Term Care (LTC) I feel as though, since I cannot educate a Alzheimer/Dementia/ MR or unconscious resident; our society leave these decision up to the resident’s family members that determine when to say enough is enough. Unfortunately even when LTC residents have advanced directives and Living wills; many times facilities and MD’s will err on the side of the families’ wishes; especially with a confused resident; as the world ever so progresses into a sue happy society, MD’s, medical practioners and nurses are forced to err on the side of caution. Great article, now if only we could get long term care (TLC) residents and family members to read it and get them some education perhaps the Medicare System would not be in the dire straights it is now. I know that sounds harsh, but I am a firm believer in advocating for my residents and following their advanced directives/ living wills and honoring their wishes. It is So, So hard to sit back and watch as some families make poor choices for their loved ones and feel helpless (Nurses get sued too) because we have to be very cautious on how much and what we say. CPR is another story, as one gentleman stated above, it does save a few lives, this is why medical professionals are trained and perform it. However, a 63 year old man verses a 95 year old with co-morbidities and no quality of life is another story. I see it daily, it is heart breaking. I learned early on in my profession, especially working with the elderly, that these LTC residents know when they are tired of living and know when they are ready to reconnect with their loved ones in Heaven. They have told me, many times: “Deb I’ve lived my life, I am tired, I am tired of not feeling well and I am tired of living”, and these are not Depression patients). I only wish they would tell their families this, they WON’T. Why:. because they fight to stay alive, not for themself,but for ther iloved ones…..
Thank you once again for this article, unfortunately I don’t believe the information will get to the people that really need this education; the patients (residents) and the family members.
Sincerely, D. Mesick, RN, BSN