As a retired general surgeon, I feel your anguish, impotence if you will, by not recognizing subtle changes (in this case the patient's own premonition, that may have made her ask the question to begin with, as she felt something utterly wrong was occurring but, of course, couldn't express, only subconsciously aware of), and continue to praise the stability, the lack of certain worrying findings such as fever, and the time of her discharge at hand. Promises, promises, it has been said, were made to be broken, hence our caution and even aloofness that nothing bad could possibly be occurring. It reminds me of a nursing instructor for pregnant women near-term, telling them they are entitled to a healthy baby. Famous last words. Or that I will do the appendectomy or cholecystectomy laparoscopically, promising not to open the abdomen, just having to swallow my words, and pride, if that promise could not be kept. As we grow older, and experienced, we stop making silly promises, just that we shall do our best... while outlining the risks. And recognizing that the only way to avoid mistakes is by sitting idly on our hands. A humble experience is worth its weight in gold, as it brings us professionals down to Earth, where we belong. To those still playing God, I caution, stop playing with fire, you'll get burned; and sometimes you'll burn the patient as well.
Most clinicians learn this the hard way, by doing it wrong and learning from the mistake. Patients desperately want promises that all will be well and it is the most normal and natural thing to want to provide that to them. But chance and probability rule the hospital and clinic, not our wishes, desires, or hopes.
It is the pinnacle of the art of medical practice to inspire hope and realistic optimism in the face of brutal realities and the vagaries of chance. It is cruel and inhuman to beat people up with these harsh truths without balancing it with a proper dose of optimism and hope. As Hippocrates said; 'Art is long, life is short'.
It is the pinnacle of the art of medical practice to inspire hope and realistic optimism in the face of brutal realities and the vagaries of chance. It is cruel and inhuman to beat people up with these harsh truths without balancing it with a proper dose of optimism and hope. As Hippocrates said; 'Art is long, life is short'.
2
Thank you Dr. Seekers, for sharing this story and your reflections. Your story is moving, instructive and important. You have stimulated many readers to reflect, and some of us to share our own reflections.
As a physician who has been interested in learning about how to best communicate with patients, and teach others to do the same, I am impressed with your willingness to share the challenges all physicians face dealing with many levels of uncertainty as well as the inevitable angst, pain and suffering patients and families will experience, despite our best efforts to reduce and ease the suffering.
Thanks, again to you, and your patient and her husband, for the valuable lessons!
As a physician who has been interested in learning about how to best communicate with patients, and teach others to do the same, I am impressed with your willingness to share the challenges all physicians face dealing with many levels of uncertainty as well as the inevitable angst, pain and suffering patients and families will experience, despite our best efforts to reduce and ease the suffering.
Thanks, again to you, and your patient and her husband, for the valuable lessons!
4
You could have kept that promise: it just required you to ask the patient if she wanted to be discharged from hospital, and if she said yes then to ensure that she was discharged quickly (despite any objections from other staff). Doctors are ABLE to let patients make decisions about their own care, but choose not to do so.
6
Someone so sick they need the icu could literally die on the way out the door or on the way home. There is no meaningful discharge for an unstable patient.
1
They should bottle what my Mother's oncologist has.
My Mom, almost 80, was diagnosed with stage 4 terminal cancer. Her oncologist was compassionate and no nonsense. Her philosophy was my Mom would ask when she was ready for the answers. I, as her caregiver, knew immediately they couldn't fix this and all of my questions were answered forthright. It took Mom a lot longer to accept. Denial helped her cope.
The day my Mother looked her doctor square in the face after 2 courses of treatment over 2 years and said "it won't work if there is only a 20% chance" I wanted her to try but she said no. I was proud of her. She was in charge here.
Did it put a burden on me to explain, several times, that no, they can't fix this...but it was part of me helping my Mother die. It was a process. When she was ready, she sure did ask her questions, made decisions and died with her entire family, except me, by her side. It was my day off and I didn't make it to hospice in time. It was fine with me, I couldn't emotionally be there to see her go. I bet she knew it and left purposefully. She and I had wonderful times through all of this.
Thank you doctor Hellmann for you honesty, compassion and wisdom.
Mommie: "All of me loves all of you"
That was our song, we sang to one another...
My Mom, almost 80, was diagnosed with stage 4 terminal cancer. Her oncologist was compassionate and no nonsense. Her philosophy was my Mom would ask when she was ready for the answers. I, as her caregiver, knew immediately they couldn't fix this and all of my questions were answered forthright. It took Mom a lot longer to accept. Denial helped her cope.
The day my Mother looked her doctor square in the face after 2 courses of treatment over 2 years and said "it won't work if there is only a 20% chance" I wanted her to try but she said no. I was proud of her. She was in charge here.
Did it put a burden on me to explain, several times, that no, they can't fix this...but it was part of me helping my Mother die. It was a process. When she was ready, she sure did ask her questions, made decisions and died with her entire family, except me, by her side. It was my day off and I didn't make it to hospice in time. It was fine with me, I couldn't emotionally be there to see her go. I bet she knew it and left purposefully. She and I had wonderful times through all of this.
Thank you doctor Hellmann for you honesty, compassion and wisdom.
Mommie: "All of me loves all of you"
That was our song, we sang to one another...
12
This is so touching. Thank you for sharing it with us. It made me think of my mom she died in a hospital and I wasn't with her which I will never get over.
1
It's called the "optimism bias" in people's thinking.
The restless-to-move-on pride of "cure" providers should be taught this in their earliest training. And reminded daily that they are "care" providers - rarely "cure" providers. If it takes strong dying patients to do this reminding, so be it. Patients and family member too suffer from this bias - so defer to unambiguous patient choices or preferences. Always. All ways.
The restless-to-move-on pride of "cure" providers should be taught this in their earliest training. And reminded daily that they are "care" providers - rarely "cure" providers. If it takes strong dying patients to do this reminding, so be it. Patients and family member too suffer from this bias - so defer to unambiguous patient choices or preferences. Always. All ways.
1
Medical care providers seem to constantly offer only the best possibilities, while frequently avoiding grim probabilities or speaking in coded messages that are misunderstood by the patient. I've seen this happen repeatedly with dying friends and family.
Communicating unpleasant news is part of the job. Please respect us enough to be frank, even if it slows you down a bit.
Communicating unpleasant news is part of the job. Please respect us enough to be frank, even if it slows you down a bit.
12
The collective noun for a group of American medical practitioners is currently called an overcharging, as in "I walked into her room with my overcharging of team members".
10
It wasn't your fault.
But I sure do wish doctors would listen to me. You know averages, but I know myself. When I tell you something is wrong, for me, please, please, please, don't dismiss me as stupid. I could have gone to medical school but knew I didn't have the compassion. I wasn't too stupid. I had the GPA. I know I'm not a doctor but I'm not an idiot.
She felt something. Listen, advocate for her, let her go home!
I know you are smart. Listening to people like me won't make you less smart. I promise, and I won't think that. (Unless I have meth in my system, then all bets are off.) Otherwise... I beg you, treat me as if I have information you don't, because most of the time, when it comes to me... I do.
But I sure do wish doctors would listen to me. You know averages, but I know myself. When I tell you something is wrong, for me, please, please, please, don't dismiss me as stupid. I could have gone to medical school but knew I didn't have the compassion. I wasn't too stupid. I had the GPA. I know I'm not a doctor but I'm not an idiot.
She felt something. Listen, advocate for her, let her go home!
I know you are smart. Listening to people like me won't make you less smart. I promise, and I won't think that. (Unless I have meth in my system, then all bets are off.) Otherwise... I beg you, treat me as if I have information you don't, because most of the time, when it comes to me... I do.
14
Less than ten days from passing from pancreatic cancer (I am a physician, and was shocked at how fast that disease worsened), my mother had a Saturday "anxiety event" in the hospital when she insisted that we get our family lawyer in that very day. She wanted her affairs in order. And we all had a private talk that night about what she expected of us. We hoped she had weeks or months left, but she knew. We learned that home hospice care is one of the most loving things you can do for a person. Its a lot to deal with at the time (helped along at the time by some of the most professional nurses I've ever encountered), but a family should take pride in caring for their loved one at home. Also, we never heard from one of the oncologists "she is going to die". If one of her best friends had not been an oncology nurse she likely would have died right there in that cold hospital room. I am not an oncologist and have sympathy for what they have to do, but their duty is not just to attempt to cure. I'm glad you are examining your feelings about this.
21
The more I hear of stories like these -- chemotherapy, hospital-borne infection, respirators -- the more I believe that the most reliable way to avoid dying in a hospital is to not check into one to begin with.
A 2013 article in The New York Times noted that greater than half of Americans "spend their final days in hospitals, often in intensive care units, tethered to machines and feeding tubes, or in nursing homes." In my opinion, that deeply disturbing statistic is strong evidence that our medical system cannot be trusted to handle anyone's death adequately.
That article, by the way, was titled "How Doctors Die." It profiled an M.D. who was lucky enough to make informed and authoritative decisions about the end of her life -- which occurred at her home.
A 2013 article in The New York Times noted that greater than half of Americans "spend their final days in hospitals, often in intensive care units, tethered to machines and feeding tubes, or in nursing homes." In my opinion, that deeply disturbing statistic is strong evidence that our medical system cannot be trusted to handle anyone's death adequately.
That article, by the way, was titled "How Doctors Die." It profiled an M.D. who was lucky enough to make informed and authoritative decisions about the end of her life -- which occurred at her home.
12
After recently spending 6 months watching my wife of nearly 50 years die of breast cancer, I developed my own views on all this. The first time we were able to go home, for 6 weeks, it was a great achievement for my wife and
the first 3 weeks made her happy. Ultimately a medical emergency developed and she was transported back to the hospital by ambulance. After she was partially stabilized in a couple of days, she elected to stop the daily blood transfusions which were necessary for her to survive even day by day. She elected to die in the hospital where she could die, as she requested, quietly and without commotion. Lacking any blood platelets, so at constant risk for uncontrollable bleeding, this outcome could not be guaranteed. But by having the ability to provide medications as needed, nursing care 24 hours a day, and thoughtful and loving attention by the staff, it was accomplished. I was with her 24 hours a day for the last several months. The hospital provided me a place to sleep beside her and constant availability to deal with problems. We all understood that no life prolonging efforts were to be made. And so my wife's last request that she die peacefully was granted. If anyone thinks that in all cases the goal is to die outside the hospital, they should think about how the end occurs.
the first 3 weeks made her happy. Ultimately a medical emergency developed and she was transported back to the hospital by ambulance. After she was partially stabilized in a couple of days, she elected to stop the daily blood transfusions which were necessary for her to survive even day by day. She elected to die in the hospital where she could die, as she requested, quietly and without commotion. Lacking any blood platelets, so at constant risk for uncontrollable bleeding, this outcome could not be guaranteed. But by having the ability to provide medications as needed, nursing care 24 hours a day, and thoughtful and loving attention by the staff, it was accomplished. I was with her 24 hours a day for the last several months. The hospital provided me a place to sleep beside her and constant availability to deal with problems. We all understood that no life prolonging efforts were to be made. And so my wife's last request that she die peacefully was granted. If anyone thinks that in all cases the goal is to die outside the hospital, they should think about how the end occurs.
33
As a hospice nurse, my goal is to make you comfortable wherever you choose to be during your finals days, and I agree, sometimes the hospital is the place a patient will feel most comfortable. It's not about us, it's about the patient. I am thrilled to see the trend in hospital to have dedicated teams and even dedicated units for palliative care.
5
This doctor clearly didn't LISTEN to his patient. I learned in nursing school that patients often know that they are going to die before providers do. If the doctor had truly listened, he would have taken some extra time to explore his patient's feelings. Unfortunately, I am sure that the Cleveland Clinic is no different from any other healthcare institution in that there is often no "extra" time to spend with a patient.
The doctor had no reason to send this patient to hospice or palliative care. She was actively being treated for her disease. And once a patient declines that quickly, the next step is ICU.
The doctor had no reason to send this patient to hospice or palliative care. She was actively being treated for her disease. And once a patient declines that quickly, the next step is ICU.
2
I too am a nurse and I had a different impression. I thought he did try tease out what she was feeling.
3
"You have to be cruel to be kind", says the old adage.
2
This doctor realizes as his last sentence indicates that one should not make promises one cannot keep. He did the best he knew at the time on the spot and did it out of sympathy for her. He is a good man. The health professionals should have ongoing discussions and thoughts in place for dealing with these sorts of pleadings. Also, as someone has mentioned hospice immediately available rather than the Intensive Care unit
5
The Stanford Center for Compassion and Altruism defines compassion as:
1. Awareness and recognition of suffering
2. A feeling of concern for and a connection to the one who is suffering
3. A desire to relieve that suffering
4. A willingness to respond.
I too am a physician and I recognize how difficult the last part is. What do we do to respond to suffering when we cannot take it away? Compassion makes you want to connect and engage with rather than avoid suffering. Perhaps that connection and engagement is sometimes all we can offer and we have to tolerate the empathic distress we feel not being able to give exactly what is being asked of us.
1. Awareness and recognition of suffering
2. A feeling of concern for and a connection to the one who is suffering
3. A desire to relieve that suffering
4. A willingness to respond.
I too am a physician and I recognize how difficult the last part is. What do we do to respond to suffering when we cannot take it away? Compassion makes you want to connect and engage with rather than avoid suffering. Perhaps that connection and engagement is sometimes all we can offer and we have to tolerate the empathic distress we feel not being able to give exactly what is being asked of us.
13
Treating the patient in the ICU gave her the only chance she had not to die. By doing all he could to prevent her death, he was doing his best to fulfill his promise.
15
Thank you for sharing your experience and your reflections on what happened. I am glad the husband understands. The question of what to do differently the next time, in the face of a patient who is so persistent....in an ideal world you would send your posse to get coffee and talk to her and the husband without the audience, to give her a change to talk more freely and to include him in a discussion of what lies behind her insistence on that promise.
I also wonder whether there was an opportunity in ICU when it was clear that further intensive level of care was futile, that she could have been moved to a private quiet room to allow family time to talk with her and grieve, before discontinuing the ventilator and allowing natural death.
I also wonder whether there was an opportunity in ICU when it was clear that further intensive level of care was futile, that she could have been moved to a private quiet room to allow family time to talk with her and grieve, before discontinuing the ventilator and allowing natural death.
7
Dr. Sekeres, you gave her comfort when she needed it the most and peace by being with her. You did the right thing.
9
As a cancer survivor I'm frustrated here by the failings of the doctor, the patient and my fellow commentators. The promise was a silly distraction. Stop fixating on it, all of you!
Blood infections, when you have next to no immune system, have very subtle symptoms. (I know. I've had one and had to be more than a little insistent that they double check my prognosis when I knew something was wrong)
Doctors have all the medical knowledge, but we the patients live 24/7 with our symptoms. We must be the doctor's eyes and ears and report clearly any changes we observe in our condition. The patient made a terrible mistake by jumping to conclusions that she would die and fixating on it. What she should have said is "Something is going wrong. It's hard to describe but I can feel it. What could be making me worse? Please take a closer look at me to see if you are missing anything."
The doctors made a terrible mistake by *also* fixating on the promise and being a little too confident in their rosy prognosis for her, rather than hearing her (justified) cry for help/attention. Next time, I hope he is more willing to go looking for trouble! If they had run a blood culture then and caught the infection, they probably could have stopped it. (It might have required a few days in ICU/isolation, like I did, but with the right course of IV antibiotics they probably could have beat the infection. Timing is everything.)
Blood infections, when you have next to no immune system, have very subtle symptoms. (I know. I've had one and had to be more than a little insistent that they double check my prognosis when I knew something was wrong)
Doctors have all the medical knowledge, but we the patients live 24/7 with our symptoms. We must be the doctor's eyes and ears and report clearly any changes we observe in our condition. The patient made a terrible mistake by jumping to conclusions that she would die and fixating on it. What she should have said is "Something is going wrong. It's hard to describe but I can feel it. What could be making me worse? Please take a closer look at me to see if you are missing anything."
The doctors made a terrible mistake by *also* fixating on the promise and being a little too confident in their rosy prognosis for her, rather than hearing her (justified) cry for help/attention. Next time, I hope he is more willing to go looking for trouble! If they had run a blood culture then and caught the infection, they probably could have stopped it. (It might have required a few days in ICU/isolation, like I did, but with the right course of IV antibiotics they probably could have beat the infection. Timing is everything.)
29
In reply to Nobody,
Thank you for bringing this point to the foreground. You have expressed very well the error in how this case played out. The niggling feeling of unwellness that can precipitate a patient crashing should be something oncologists are alert to and actively attempt to distinguish from the general anxiety and depression patients can develop in the face of severe illness. Doctors can be so like technicians or statisticians who use the numbers in the blood work as the only clinical determinant for care, i.e. the evidence-based medicine model clinicians follow. But the dynamics of a patient can change quickly. Tests that looked good yesterday, can be changing by morning rounds, but the next test round will be ordered for two days hence, for example. It behooves the best doctors to always seek to really "see" what their patients are presenting.
I agree that medicine needs to be more flexible and responsive and to have the time to take to stay on top of minute changes in critically ill patients. Everyone knows the extreme risk of infection in cancer patients. Dr. Sekeres should take from this case not only a knowledge about the limits of promises in the face of the unknown but, more importantly, the drive to create a more intelligent and nimble medical practice to catch more of these problems at the onset. It can be done.
Thank you for bringing this point to the foreground. You have expressed very well the error in how this case played out. The niggling feeling of unwellness that can precipitate a patient crashing should be something oncologists are alert to and actively attempt to distinguish from the general anxiety and depression patients can develop in the face of severe illness. Doctors can be so like technicians or statisticians who use the numbers in the blood work as the only clinical determinant for care, i.e. the evidence-based medicine model clinicians follow. But the dynamics of a patient can change quickly. Tests that looked good yesterday, can be changing by morning rounds, but the next test round will be ordered for two days hence, for example. It behooves the best doctors to always seek to really "see" what their patients are presenting.
I agree that medicine needs to be more flexible and responsive and to have the time to take to stay on top of minute changes in critically ill patients. Everyone knows the extreme risk of infection in cancer patients. Dr. Sekeres should take from this case not only a knowledge about the limits of promises in the face of the unknown but, more importantly, the drive to create a more intelligent and nimble medical practice to catch more of these problems at the onset. It can be done.
12
Dr. Athul Gawande has written brilliantly and honestly on this topic in his book, Being Mortal. I am a person with Lympphoma. It is clear to me that I will most likely die of an opportunistic infection related to my compromised immune system. I have a living will which calls for no extreme measures. I do not want to die in a nursing home or a hospital. I have little hope that my wishes will be honored. I don' t think doctor's are bad people. But they are caught in a medical -industrial complex. The big banks are too big too fail and the medical system is to big too care. We are being treated to death.
Life is not without suffering, but needless suffering which diminishes our integrity and our very humanity is cruel. We treat sick animals with more compassion. My prayers go out to this woman and her family. I pray for a more compassionate death for all.
Life is not without suffering, but needless suffering which diminishes our integrity and our very humanity is cruel. We treat sick animals with more compassion. My prayers go out to this woman and her family. I pray for a more compassionate death for all.
25
This was a promise that could have been fulfilled if the patient's deterioration had been less dramatic. It's no-one's fault. It would be medically negligent to discharge someone in this state, and it would have been cruel not to give this woman the answer she keep pushing you for. It's very unlikely she would have been aware of where she was, but even if she had been, life, illness, death is a constant reminder of how vulnerable we all are, not just the patient.
22
As a hospice nurse I make the analogy that dying is much like being born. When you are in the throes of it, it doesn't really matter what room you are in. I tell people that we do the best we can to keep them home, but sometimes it doesn't work out that way for one reason or another. The more important issues are that the patient's needs are met and their loved ones are with them. I have seen home deaths that were disasters. The hospital where I live does a wonderful job of taking care of the dying and their families. We have come a long way and do not abandon the dying. I would not want my family member to suffer needlessly because they were kept at home when they could have received better care care at a hospital. Each situation is different.
61
This is a good analogy. Patients need to be kept reasonably clean, dry and comfortable during both childbirth and death. Unfortunately, current home hospice care deals with pain medication and little else. Families are not trained or capable of changing bed linens, bathing or diapering dying patients. If hospice can't provide at least a once daily visit to provide the bare minimum of essentials, they should not be offering to provide home care, reimbursed by the government at the rate of $160 per diem last I checked.
8
My Mon was on hospice for about 10 days.
She wanted to die at home. OMG a total nightmare. At home, Hospice provides "SUPPORT" with the family doing the lion share of it (22 out of 24 hours you are alone, weekends you are totally on your own)
She had issues arise and was transfered to a hospice facility. She was in a wonderful place, round the clock people, responsive and caring and CAPABLE. Family with her 24 hours a day.
3 days later, as she hallucinate bees, her dead father and others, they wanted to send her home. Medicare has a 3 day limit.
I would not allow it. Her care in this place far exceeded what she would get from me at home.
Dying at home is a fantasy with 1 1/2 hours of help 5 days a week and a daughter unprepared, useless expected to do it all.
While still at home, as it got worse, I showed her the morphine bottle by her bed and told her I couldn't legally give it to her but if she used it, I totally understood. I didn't want her dead but the thought of her suffering was sending me off the deep end. Hospice wasn't working here! And they wanted to put me back in that situation when my Mom was virtually in a medical hotel set up to help her die.
2 days later, Mommie died in that hospice room, comfortable, with her entire family with her. Her Grandaughters painted her nails, both daughters were there. She died peacfully...in hospice. She was very brave, a role model, and I told her so.
She wanted to die at home. OMG a total nightmare. At home, Hospice provides "SUPPORT" with the family doing the lion share of it (22 out of 24 hours you are alone, weekends you are totally on your own)
She had issues arise and was transfered to a hospice facility. She was in a wonderful place, round the clock people, responsive and caring and CAPABLE. Family with her 24 hours a day.
3 days later, as she hallucinate bees, her dead father and others, they wanted to send her home. Medicare has a 3 day limit.
I would not allow it. Her care in this place far exceeded what she would get from me at home.
Dying at home is a fantasy with 1 1/2 hours of help 5 days a week and a daughter unprepared, useless expected to do it all.
While still at home, as it got worse, I showed her the morphine bottle by her bed and told her I couldn't legally give it to her but if she used it, I totally understood. I didn't want her dead but the thought of her suffering was sending me off the deep end. Hospice wasn't working here! And they wanted to put me back in that situation when my Mom was virtually in a medical hotel set up to help her die.
2 days later, Mommie died in that hospice room, comfortable, with her entire family with her. Her Grandaughters painted her nails, both daughters were there. She died peacfully...in hospice. She was very brave, a role model, and I told her so.
14
I am so sorry for your experiences. I don't know when this happened, but I just lost a family member in a hospice last year -- and Medicare paid for SIX days in a hospice (nursing home-like) center. It was a beautiful, first class place with round the clock nursing care.
After that six days (which were 100% covered), she could have stayed on at about $400 a day. Yes, that is very costly but one assumes it is right at the very end of life, when people only have a few days or weeks at most. Nobody would want to LIVE in a hospice, as they are sad, depressing places. I saw the frail elderly dying there, but I also saw younger patients who were sitting up and eating, and who appeared to often transition back to their homes. It is not always a death sentence to go to hospice.
I am hearing that what you want is 100% round-the-clock hospice care to alleviate the burden on families -- and which could theoretically run for months or YEARS for the frail elderly. That would in essence be 100% free nursing home care. The cost would be insane. You need to do the math here. Full nursing home care costs $10,000 to $15,000 and more in some expensive cities.
Hospice should have prepared you better about the reality of caring for a dying patient. It is very hard work, stressful on families and caretakers -- may be impossible if the patient has only an elderly spouse to care for them.
My dad was able to LEAVE hospice (he hated it) and go home to die. But not everyone can do this.
After that six days (which were 100% covered), she could have stayed on at about $400 a day. Yes, that is very costly but one assumes it is right at the very end of life, when people only have a few days or weeks at most. Nobody would want to LIVE in a hospice, as they are sad, depressing places. I saw the frail elderly dying there, but I also saw younger patients who were sitting up and eating, and who appeared to often transition back to their homes. It is not always a death sentence to go to hospice.
I am hearing that what you want is 100% round-the-clock hospice care to alleviate the burden on families -- and which could theoretically run for months or YEARS for the frail elderly. That would in essence be 100% free nursing home care. The cost would be insane. You need to do the math here. Full nursing home care costs $10,000 to $15,000 and more in some expensive cities.
Hospice should have prepared you better about the reality of caring for a dying patient. It is very hard work, stressful on families and caretakers -- may be impossible if the patient has only an elderly spouse to care for them.
My dad was able to LEAVE hospice (he hated it) and go home to die. But not everyone can do this.
I would have said I am going to do my darness because if someone dies on my watch the amount of paperwork is just about impossible for me to get through.
maybe she would have laughed and said she would do her part.
maybe she would have laughed and said she would do her part.
7
I can't imagine why people are congratulating this doctor. A patient expresses a very clear desire not to die in the hospital. She should have been sent to hospice or home with hospices nurses for palliative care.
13
I disagree. Her husband should be the person to make that call, not any of us. But her doctor should never have promised her that, and then should have taken the time to explain why he couldn't make that promise--no one could. That could have led to her demanding to go home on hospice should she fail.
But usually in the end, it's really the next of kin who decides.
But usually in the end, it's really the next of kin who decides.
5
That was not medically indicated at the time the promise was made. By the time the blood infection took hold she needed acute care a hospice nurse couldn't provide. It would have been a death sentence to release her from ICU!
Hospice is for when you know the patient will die, but it will take time. I've been a cancer patient, and I've had a serious blood infection as a complication. That was 14 years ago. The doctors were right not to give up on her too soon.
The only mistake the doctor made was not picking up on her demand for a promise that what she was really saying was "I know something is wrong, but don't know what it is or how to express it. Please pay attention to me. Take a closer look and do some more tests!"
Our doctors have all the medical training, but we the patients are living with our symptoms 24/7. It's our job to be their eyes and ears and communicate as clearly as we can what is going on. She failed to make herself understood.
Hospice is for when you know the patient will die, but it will take time. I've been a cancer patient, and I've had a serious blood infection as a complication. That was 14 years ago. The doctors were right not to give up on her too soon.
The only mistake the doctor made was not picking up on her demand for a promise that what she was really saying was "I know something is wrong, but don't know what it is or how to express it. Please pay attention to me. Take a closer look and do some more tests!"
Our doctors have all the medical training, but we the patients are living with our symptoms 24/7. It's our job to be their eyes and ears and communicate as clearly as we can what is going on. She failed to make herself understood.
10
That request put the physician in an untenable position. As he acknowledges he should not have made the promise. She is in the hospital and although recovering from a round of chemotherapy for leukemia she was still at risk for the complications that occurred. This issue should have prompted a family discussion. The only absolute guarantee would have been for her to be discharged at the time she made the request. She could have been informed of the risks and the decision would have been hers to make.
4
As a law teacher, I see new lawyers consistently feeling compelled to promise what they can't deliver. With experience comes the wisdom of caution.
5
Here's a promise you could have made: I can't control the future, unfortunately. I will do the best I can to see to it that you do not die in the hospital. If somehow it comes about that you are here and things go south, I'll do the best I can to make it as easy as possible on you and your family. But we'll try hard not to have that happen.
Would that have eased her? Probably not. So in the circumstances, you did the right thing.
Would that have eased her? Probably not. So in the circumstances, you did the right thing.
44
Since this lady was clearly dying, was there no better place for her than intensive care? She couldn't die at home as she wished, but was there no palliative care bed where the IV's and respirator could be removed, where she could be given butterflies for an opiate and any other drug that would make her more comfortable? Where the lights were dim, favourite music could be played, where her family could hold her?
34
It likely wasn't clear she was dying when the decision was made to admit her to intensive care. I thought it was a beautiful piece about the hard decisions doctors have to make about even little things, like language to use with their patients. To me the article really speaks to the model that much of healthcare is built on -- you get sick, you seek care, you get better. Dying isn't often what we think about, but it's a real possibility every day, especially if we have a serious illness. This article did a great job of showing how doctors aren't immune from subtly avoiding this tough topic.
14
"Early the following morning, I was paged with the news that, out of the blue, her blood pressure had plummeted, she had become confused, and she had spiked a fever. She was quickly transferred to the intensive care unit......She looked awful. By that point, a breathing tube had been placed and she was on a respirator. Her body had already started to swell, from the fluids that were being rapidly infused into her veins to keep her blood pressure up, and she was on two medications — pressors — to raise her blood pressure even further. I had checked her labs, which indicated that her kidneys were starting to fail, and that a bacterium had been identified in her bloodstream – the cause of this maelstrom of ensuing sickness."
At this point she is clearly dying. Edema, failing kidneys and sepsis. It is not clear from this article whether she was then offered palliative care during her last hours. I think this doctor did the best with the system he had, but it is hard to die in the ICU.
At this point she is clearly dying. Edema, failing kidneys and sepsis. It is not clear from this article whether she was then offered palliative care during her last hours. I think this doctor did the best with the system he had, but it is hard to die in the ICU.
Shortly after my FIL was admitted to the ICU, the doctor told us that he would not make it and asked if we wanted to continue with the respirator, etc. My MIL and husband said no. After that, the medical staff left both him and us in peace, simply maintaining a heart rate monitor, and checking in with us every once in awhile to see how we were doing. The room was a hospital room, of course, but not horrible; there were no limits on when we could be in the room; and the staff was very caring and patient, particularly a very lovely young woman doctor. Definitely not the horror story one so often hears.
2
Heartbreaking, both for doctor and patient. We need to get better about talking to patients about dying. One way, perhaps, is to involve the palliative care team for a full discussion of treatment plan options and alternatives long before a patient needs intubation or ICU admission.
16
You're human. At least you gave in and responded to her deep fear. You didn't turn away and dismiss her. That was compassionate.
I don't know all of your feelings, but the comments I might rue are the questions "what's the matter?" and "why are you worried?" which put her on the spot. But perhaps the tone, which we readers cannot hear, told her otherwise. Better, to say something like: "I can see how worried you are. Would you to talk about it?" And so on. But again, we're human.
Glad that you told the husband ( for your sake) and that he reacted with understanding.
I don't know all of your feelings, but the comments I might rue are the questions "what's the matter?" and "why are you worried?" which put her on the spot. But perhaps the tone, which we readers cannot hear, told her otherwise. Better, to say something like: "I can see how worried you are. Would you to talk about it?" And so on. But again, we're human.
Glad that you told the husband ( for your sake) and that he reacted with understanding.
31
Thanks Cheryl. I didn't think to look at it that way when I read the article: "We're not nervous about you, why are you worried?" carries a subtext of "We know sooo much more than you --- if we think you're doing well, then we are right and you are just being silly."
It was *probably* not conscious arrogance that kept Dr. Sekkeres (or anyone else in his group) from noticing that her repeated reminders of his untenable promise may have actually meant something.
Reminds me of a story my friend tells about when her mother was pregnant with my friend's older brother, 50+ years ago: she was pretty sure she was starting to have the baby and her husband wasn't home, so she called the hospital. They stayed on the phone with her throughout her labor, insisting that she was just having gas or being hysterical, until they heard the baby's cry.
It was *probably* not conscious arrogance that kept Dr. Sekkeres (or anyone else in his group) from noticing that her repeated reminders of his untenable promise may have actually meant something.
Reminds me of a story my friend tells about when her mother was pregnant with my friend's older brother, 50+ years ago: she was pretty sure she was starting to have the baby and her husband wasn't home, so she called the hospital. They stayed on the phone with her throughout her labor, insisting that she was just having gas or being hysterical, until they heard the baby's cry.
5
I'm thankful that the husband was compassionate towards you after having made a promise that God herself could not keep.
61
Nice column. I don't know how oncologists stand it. All that death, all those useless treatments (for breast cancer). Maybe that's why I've found most of my oncologists to be distant at best, insulting and dishonest at worst.
22
My cancer doctors are super--very compassionate and very honest, and if prodded sufficiently, very forthcoming with information. But you're right that it must be so hard, especially for the good ones like mine. Maybe what keeps them going are the cases that turn out well, as mine has. They always seem so happy to see me and tell me how great I look!
18
As a cancer survivor, I have found oncologists to be some of the warmest and smartest people I've ever met. I really felt like I was part of the team and we were all collaborating to try to outsmart and kill the thing that was trying to kill me.
If you want to be treated with respect, compassion and integrity, may I suggest that you hone those skills in yourself first?
A few practical tips:
1: Don't blame the docs for your illness. You got sick all by yourself.
2: Recognize they are human and life happens to them too. My doctor was running 90 minutes behind one day when I was in the middle of treatment. Rather than complaining when I finally got to see her I commented "rough day at the office huh?" It turns out her young daughter had a bad cold and she couldn't get a baby sitter so she was late for work! (people with less important jobs would have just called in sick) I told her I was grateful for her dedication.
3: The doctors salary is out of your hands but you can "pay them a compliment" or "pay your respect". It costs you very little and really is part of why they go into that line of work. Don't be cheap here! It will do wonders for the doctor/patient relationship and could greatly improve your outcome.
If you want to be treated with respect, compassion and integrity, may I suggest that you hone those skills in yourself first?
A few practical tips:
1: Don't blame the docs for your illness. You got sick all by yourself.
2: Recognize they are human and life happens to them too. My doctor was running 90 minutes behind one day when I was in the middle of treatment. Rather than complaining when I finally got to see her I commented "rough day at the office huh?" It turns out her young daughter had a bad cold and she couldn't get a baby sitter so she was late for work! (people with less important jobs would have just called in sick) I told her I was grateful for her dedication.
3: The doctors salary is out of your hands but you can "pay them a compliment" or "pay your respect". It costs you very little and really is part of why they go into that line of work. Don't be cheap here! It will do wonders for the doctor/patient relationship and could greatly improve your outcome.
19
Nothing is certain! Painful and familiar.
15
I love medical doctors, and I have so much sympathy for them. I come from a family of doctors, and United Methodist Christians too, and I think we should support them in the measure they use their talents to save lives, and comfort those they cannot save.
19
'No promises' is the best policy.
Reality always interferes with idealism.
Reality always interferes with idealism.
26
Missed opportunities that break the heart - Perhaps she was signalling her wanting to reassured about her fears - an exploratory question would have been helpful such as "can you tell me what you are most/specifically worried about dying in hospital?- the conversation might have then evolved in to one that might have allowed her to express her fears and her wants/needs and knowing those other options rather than allowing her to be intubated and transferred when she did not want that - she could have died (ie: lived) differently..
30
My husband went through 19 months of cancer treatment, he was also a doctor. And, discussions about dying happened frequently, when he had moments of clairvoyance, similar to this patient. We had a plan with no promises because complications arise so quickly and sometimes out of nowhere. A cancer diagnosis either provokes wonderful conversations about life and living out the time that is left or invoking paralysis about the inevitable and denial. At least it sounds like there were frank discussions along the way and this death happened from a sudden complication preventing her from dying at home. There is hope from this article that "the talk of a lifetime" is taking place, peace comes from talking about the concerns and final wishes spelled out through advanced directives.
4
Essentially you are confirming the sad reality of how physicians avoid the conversation about bad news and the probability of bad news. It is a disservice to patients and loved ones to not talk about how that looks like and what happens when things go south. The physicians fear is becoming a disservice to the patient and with that he fails. Why not share the numbers and reasons why things can go south, why only talk about the optimistic outcome?
3
I think you did the right thing. Your patient clearly sensed the end was near. You eased her mind before that final journey. It was compassionate.
53
The big issue for patients, families and doctors is to get into agreement as to when the ENOUGH moments has been reached.