Talking about medical issues in a blog is hard for the most part because a lot of a physician's experiences are derived from single encounters with a particular patient. A surprising number of our most cherished and/or educational career moments can be traced to a single incident. Of course one has to be careful in talking about these times because of patient confidentiality. Like a spy huge parts of my career are hidden from even those most dear to me. Their only clue to my day being a look in my eyes that my wife has long since learned to recognize. So I've tended to shy away from exact clinical experiences because of this with few exceptions. But a recent experience has reminded me about the importance of articulating some of what we learn through more trial and error than we would like. As events unfold that if all goes well, will finally take me away from the bedside for good, I'm feeling a certain nostalgia. So tonight I'm writing about a part of my experience with caring for patients with cancer although I hope none of you ever need to benefit from any of this. I'm not going to talk anything about the treatment of cancer - just some thoughts on how we treat people with cancer.
Few words are as paralyzing as cancer (I knew how terrible AIDS had become when a young man I had been asked to see turned out to have AIDS. He asked if we should do some other tests because maybe it was cancer or something else). The moment a physician says that word anything that follows becomes nothing but static in your ears. The ultimate in betrayal, our own body conspiring to kill us. Just enough of us left in it to make it harder to kill. The word has seemed more like a death sentence than a condition to most people even today when the range of treatments is so much better and improves all the time.
As a general surgeon, I've seen more than my share of patients with cancer and had to break the news to many of them. It's never gotten any easier nor do I ever expect that it will. Many of the people I've seen over the years came to me late in their disease when I was asked by some other doctor to either implant a catheter for treatment or perform what are called palliative procedures; surgeries not intended to cure but to reduce suffering or prolong life for some period.
Ironically these brave souls, whom I could neither treat nor help with any clinical means taught me more about my chosen profession than the ones that I could treat successfully. These experiences have taught me some lessons about caring for patients with a diagnosis of cancer and have opened my eyes to some of the disservices done to them. Not just the ones done by the medical profession either. What follows in no particular order of importance are some of the things I've seen and ways I've tried to combat these problems for what it's worth. I share this here because most of these things apply to everyone not just medical professionals. Many of these items are most germane to those individuals who aren't likely to survive their condition but also apply to those who are. And many may provide comfort to those left behind.
Cancer patient: It's subtle but I always try to avoid labeling a person as a diabetic, a cancer patient, an asthmatic and so on. Every time we do this it gives the condition center stage instead of acknowledging that a human being, made up of many parts with many descriptors happens to also have a condition. It's all part of how we tend to define things by how they end rather than remembering a life well lived. Cancer may consume a life but we should never let it consume the living.
'There's nothing more we can do'; Our healthcare system isn't one. It's an acute care system; a very good one at that, but it isn't designed or really equipped all that well to deal with dying patients. Yes we have hospice programs and the like and the people who perform that service are wonderful but it doesn't serve the needs of all patients as much as it serves the needs of care givers. One of the things I seen over the years is that when a patient is diagnosed with a terminal illness, many of their physician care givers stop seeing them since they have nothing more to offer. Not true. Physicians, in my experience, can do a lot. Patients with terminal disease need the comfort often of nothing more than simple acknowledgment and attention. Over the years we had our patients who were dying come to the office routinely for scheduled exams just to sit down and talk with them. It's amazing how often they would eventually open up and tell you what they were thinking, what they feared, and what they wanted from their own death and their family. We became their liaison with the living. It may have been one of the most important duties for which I was never trained. Families would see that dad or mom, sis or brother was not being abandoned and started to come in with them and use our office to talk about things that needed to be said while there was still time. It didn't make them live longer but it allowed them to die much easier. The families also came to trust us more and listened to what needed to be done when the time came. There is a lot we can do - even when there is no hope - there can be peace. Guilt drives family members to insist on inappropriate efforts at the end of life as a display of how much they care. I've seen that little terminal family drama play out far too many times. It harms not just the patient but the families that remain. Usually it just prolongs suffering rather than extends life in any case. The time from when the certainty of death is apparent until the end, can be used to purge that guilt and mend fences and physicians can help with this. Partly it's because we are seen as sort of a disinterested bystander. We have nothing to gain one way or the other so our motivations tend not be questioned. A mediator comes in handy a lot of the time and a doc can do that pretty well. There's nothing magical or saintly in doing any of this it just takes common sense and a little empathy. This is why I have been maddened by these dreadful lies coming from opponents to healthcare reform about counseling services to those near the end of their lives. It's the opposite of death panels - it is compassion for those who need it most. Those poor souls feeling lost because they are losing what little control over their own destinys they previously enjoyed. Opposing that is plain evil, in its most apathetic form.
Isolation: As a resident I started to notice that dying patients didn't get touched. I guess we all thought death was contagious or something. Patients with cancer suffer terribly from this neglect. I can recall the relief I've seen in the eyes of the dying when you shake or pat their hand. A lot of the reason that we had people come in to the office for an exam is because it was the only time they ever had any physical contact with another human being. Some guy in a white coat listening to their lung sounds was the only contact many of them had. That was its only purpose. I don't believe in therapeutic touch but I do in Humanitarian touch.
Isolation takes other forms as well. People don't talk and the patient feels like they shouldn't. They have a lot they'd like to say but don't want to be a burden. Can you be a burden to those who love you? Being a stoic in my experience is just a lost opportunity to make someone understand how much they mean to you at a time when hearing that may make all the difference in the world. I learned these things by listening to the dying. Most of the time they did all the talking except when it was time to bring in their family members and get them talking. Then I'd leave them in my office as long as they needed. Neutral territory.
Dying at home; A colleague of mine found out that fewer of my patients with terminal illnesses died in the hospital than any other service. He asked me why and my answer was simple - peaceful deaths do not always occur in the hospital. People at peace with what was coming and with those they loved tended to die in the comfort and embrace of their own homes. On more than one occasion I had to leave the hospital to pronounce a patient of mine dead, so that paramedics would not have to transport them to the hospital. I will never forget one particular time. A fine elderly man's (I'd been caring for him about a year) lovely wife called me to tell me he had passed and asked if I could prevent the paramedics from taking him. I drove over to his house and found him at rest in his recliner surrounded by his family - lifeless but looking at peace at last. What possible good could have come from his last breath in a hospital escapes me. Many if not most would prefer to die at home. Only fear of pain and a greater fear of being a burden keep them from asking. They shouldn't have to ask.
Pain: Politics has no place in suffering. Some with agendas claim that all pain is manageable. In the words of my most famous mentor "that's a bunch of bullshit!" Most pain is manageable, not all. I've worked with those in pain for 2 decades and given boatloads of meds to treat pain. It isn't always enough. How many prescriptions for large bottles of narcotic pain elixirs have been given to patients by their doctor in the last weeks of life with explicit instructions to "never take all of it at one time because it would kill you"? Quite a few I would guess. Of course they'd never suggest any illegal acts and been 'shocked' if the patient dies of an overdose but there it is. One of medicine's dirtiest secrets - the law promotes suffering.
I count myself fortunate to live in the first state to fix that to some degree. For some the ultimate release from their feelings of helplessness is to choose the time, manner and location of their death. This is one thing that I am an absolutist about; No book, no creed, no belief, no pundit will ever convince me that this is wrong. This is not an academic debate to me. I have attended the deaths of quite a few fellow humans and see nothing noble in any of the suffering I have seen. Having options preserves some measure of autonomy - control in at least one final way to those who have lost all other controls. Many (possibly even most) won't use the option but having it there does provide comfort.
Death is a failure; It has always amazes me how doctors and nurses come to think of every death as a failure. Considering that we all die that results in a failure rate of 100% in time. I don't know why but I've never felt that way. Don't get me wrong; I fight for my patients to the extent of my abilities and those of anyone else who can contribute but sometimes it's not enough. That's part of the reason they abandon the dying - get over it, this isn't about us. Tending the dying and relieving their suffering is no failure at all.
Prayer: I put great stock in prayer and ritual for the sick. I don't believe it does anything concrete but if it provides comfort to the suffering then I'm for it. I've performed surgery while a native American shaman chanted over the patient. Fine by me - it isn't about what I believe but what comforts the sick. We forget that it isn't about us sometimes.
The most sacred duty of a physician is to alleviate suffering. That suffering can be clinical, emotional, social, familial. We are uniquely positioned to help with all of that and the patient with cancer needs all that we can bring to bear. Oh well, enough ranting for one night. Be well all.
Few words are as paralyzing as cancer (I knew how terrible AIDS had become when a young man I had been asked to see turned out to have AIDS. He asked if we should do some other tests because maybe it was cancer or something else). The moment a physician says that word anything that follows becomes nothing but static in your ears. The ultimate in betrayal, our own body conspiring to kill us. Just enough of us left in it to make it harder to kill. The word has seemed more like a death sentence than a condition to most people even today when the range of treatments is so much better and improves all the time.
As a general surgeon, I've seen more than my share of patients with cancer and had to break the news to many of them. It's never gotten any easier nor do I ever expect that it will. Many of the people I've seen over the years came to me late in their disease when I was asked by some other doctor to either implant a catheter for treatment or perform what are called palliative procedures; surgeries not intended to cure but to reduce suffering or prolong life for some period.
Ironically these brave souls, whom I could neither treat nor help with any clinical means taught me more about my chosen profession than the ones that I could treat successfully. These experiences have taught me some lessons about caring for patients with a diagnosis of cancer and have opened my eyes to some of the disservices done to them. Not just the ones done by the medical profession either. What follows in no particular order of importance are some of the things I've seen and ways I've tried to combat these problems for what it's worth. I share this here because most of these things apply to everyone not just medical professionals. Many of these items are most germane to those individuals who aren't likely to survive their condition but also apply to those who are. And many may provide comfort to those left behind.
Cancer patient: It's subtle but I always try to avoid labeling a person as a diabetic, a cancer patient, an asthmatic and so on. Every time we do this it gives the condition center stage instead of acknowledging that a human being, made up of many parts with many descriptors happens to also have a condition. It's all part of how we tend to define things by how they end rather than remembering a life well lived. Cancer may consume a life but we should never let it consume the living.
'There's nothing more we can do'; Our healthcare system isn't one. It's an acute care system; a very good one at that, but it isn't designed or really equipped all that well to deal with dying patients. Yes we have hospice programs and the like and the people who perform that service are wonderful but it doesn't serve the needs of all patients as much as it serves the needs of care givers. One of the things I seen over the years is that when a patient is diagnosed with a terminal illness, many of their physician care givers stop seeing them since they have nothing more to offer. Not true. Physicians, in my experience, can do a lot. Patients with terminal disease need the comfort often of nothing more than simple acknowledgment and attention. Over the years we had our patients who were dying come to the office routinely for scheduled exams just to sit down and talk with them. It's amazing how often they would eventually open up and tell you what they were thinking, what they feared, and what they wanted from their own death and their family. We became their liaison with the living. It may have been one of the most important duties for which I was never trained. Families would see that dad or mom, sis or brother was not being abandoned and started to come in with them and use our office to talk about things that needed to be said while there was still time. It didn't make them live longer but it allowed them to die much easier. The families also came to trust us more and listened to what needed to be done when the time came. There is a lot we can do - even when there is no hope - there can be peace. Guilt drives family members to insist on inappropriate efforts at the end of life as a display of how much they care. I've seen that little terminal family drama play out far too many times. It harms not just the patient but the families that remain. Usually it just prolongs suffering rather than extends life in any case. The time from when the certainty of death is apparent until the end, can be used to purge that guilt and mend fences and physicians can help with this. Partly it's because we are seen as sort of a disinterested bystander. We have nothing to gain one way or the other so our motivations tend not be questioned. A mediator comes in handy a lot of the time and a doc can do that pretty well. There's nothing magical or saintly in doing any of this it just takes common sense and a little empathy. This is why I have been maddened by these dreadful lies coming from opponents to healthcare reform about counseling services to those near the end of their lives. It's the opposite of death panels - it is compassion for those who need it most. Those poor souls feeling lost because they are losing what little control over their own destinys they previously enjoyed. Opposing that is plain evil, in its most apathetic form.
Isolation: As a resident I started to notice that dying patients didn't get touched. I guess we all thought death was contagious or something. Patients with cancer suffer terribly from this neglect. I can recall the relief I've seen in the eyes of the dying when you shake or pat their hand. A lot of the reason that we had people come in to the office for an exam is because it was the only time they ever had any physical contact with another human being. Some guy in a white coat listening to their lung sounds was the only contact many of them had. That was its only purpose. I don't believe in therapeutic touch but I do in Humanitarian touch.
Isolation takes other forms as well. People don't talk and the patient feels like they shouldn't. They have a lot they'd like to say but don't want to be a burden. Can you be a burden to those who love you? Being a stoic in my experience is just a lost opportunity to make someone understand how much they mean to you at a time when hearing that may make all the difference in the world. I learned these things by listening to the dying. Most of the time they did all the talking except when it was time to bring in their family members and get them talking. Then I'd leave them in my office as long as they needed. Neutral territory.
Dying at home; A colleague of mine found out that fewer of my patients with terminal illnesses died in the hospital than any other service. He asked me why and my answer was simple - peaceful deaths do not always occur in the hospital. People at peace with what was coming and with those they loved tended to die in the comfort and embrace of their own homes. On more than one occasion I had to leave the hospital to pronounce a patient of mine dead, so that paramedics would not have to transport them to the hospital. I will never forget one particular time. A fine elderly man's (I'd been caring for him about a year) lovely wife called me to tell me he had passed and asked if I could prevent the paramedics from taking him. I drove over to his house and found him at rest in his recliner surrounded by his family - lifeless but looking at peace at last. What possible good could have come from his last breath in a hospital escapes me. Many if not most would prefer to die at home. Only fear of pain and a greater fear of being a burden keep them from asking. They shouldn't have to ask.
Pain: Politics has no place in suffering. Some with agendas claim that all pain is manageable. In the words of my most famous mentor "that's a bunch of bullshit!" Most pain is manageable, not all. I've worked with those in pain for 2 decades and given boatloads of meds to treat pain. It isn't always enough. How many prescriptions for large bottles of narcotic pain elixirs have been given to patients by their doctor in the last weeks of life with explicit instructions to "never take all of it at one time because it would kill you"? Quite a few I would guess. Of course they'd never suggest any illegal acts and been 'shocked' if the patient dies of an overdose but there it is. One of medicine's dirtiest secrets - the law promotes suffering.
I count myself fortunate to live in the first state to fix that to some degree. For some the ultimate release from their feelings of helplessness is to choose the time, manner and location of their death. This is one thing that I am an absolutist about; No book, no creed, no belief, no pundit will ever convince me that this is wrong. This is not an academic debate to me. I have attended the deaths of quite a few fellow humans and see nothing noble in any of the suffering I have seen. Having options preserves some measure of autonomy - control in at least one final way to those who have lost all other controls. Many (possibly even most) won't use the option but having it there does provide comfort.
Death is a failure; It has always amazes me how doctors and nurses come to think of every death as a failure. Considering that we all die that results in a failure rate of 100% in time. I don't know why but I've never felt that way. Don't get me wrong; I fight for my patients to the extent of my abilities and those of anyone else who can contribute but sometimes it's not enough. That's part of the reason they abandon the dying - get over it, this isn't about us. Tending the dying and relieving their suffering is no failure at all.
Prayer: I put great stock in prayer and ritual for the sick. I don't believe it does anything concrete but if it provides comfort to the suffering then I'm for it. I've performed surgery while a native American shaman chanted over the patient. Fine by me - it isn't about what I believe but what comforts the sick. We forget that it isn't about us sometimes.
The most sacred duty of a physician is to alleviate suffering. That suffering can be clinical, emotional, social, familial. We are uniquely positioned to help with all of that and the patient with cancer needs all that we can bring to bear. Oh well, enough ranting for one night. Be well all.
5 comments:
Not a rant at all Pliny. Thank you for sharing your heart on the matter. It was thoughtful and compassionate, parallel to how you treat your terminal patients.
I think you and I agree here. As much as possible, the human context first. In this way, most other things: culture, religion, race, and sex, become embedded in a context that values empathy above dogma (political or religious).
Who wouldn't want to die in peace if they could, as empty of the unsaid and unfelt as they could be. That's about as kind a situation as one could hope for.
Thanks Pliny, It gives me a little bit of peace knowing you try to be conscious of your dying patients' still very real/potent existence.
"How many prescriptions for large bottles of narcotic pain elixirs have been given to patients by their doctor in the last weeks of life with explicit instructions to "never take all of it at one time because it would kill you"? Quite a few I would guess. Of course they'd never suggest any illegal acts and been 'shocked' if the patient dies of an overdose but there it is. One of medicine's dirtiest secrets - the law promotes suffering."
Jack Kevorkian would be proud of you, Pliny!
Also, the thrust of the whole post seems to be that the greatest lessons we learn generally don't get learned in college. It's the stuff they can't teach you that ends up meaning the most.
The possible tumor was discovered through x-rays taken relative to my hearing loss. I was refered, an MRI done, and met with the doctor.
She was a quiet and very serious woman. She wanted a follow-up MRI, something special which I didn't really understand. The look in her eyes told me that I might be facing a much shorter life than I had anticipated up until that point.
The follow-up proved that there was no tumor. I recall the relief the DOCTOR felt being able to give me good news. It was visible on a face that too seldom had good news to share.
During my two visits I saw a number of people go in and out. Too many of them were children.
That is one tough job. It is not a path that I must walk, but I am thankful that my path brought me this experience.
Thank you for bringing it back to my mind and my heart through sharing your own experiences.
Mike
Pliny:
Bravo!!!
I have never read a treatment of the lessons some of us may have learned about "managing" patient's deaths as assiduously as we who are privileged to treat them "manage" their diseases that we are eventually able to cure. You have pointed out the obstacles and hangups that physicians and nurses must learn to manage in themselves before they can hope to be as helpful to their patients as they would like to be.
As you know, I am a Head and Neck Cancer surgeon (ENT), still in practice after nearly 40 years. I can echo your excellent remarks and state that some of the greatest satisfactions I have had came from successfully "managing" the eventual deaths of some of my patients, while also helping the surviving families to cope with the entire experience and pointing out to them that they will need to have "something left" for themselves after their prolonged emotional expenditures.
Finally, I must vigorously echo your anger and discomfiture that anyone would oppose end-of-life counselling on strictly political grounds. It is especially appalling that anyone would so obfuscate their real reasons for doing so by trying to convince the public that such voluntary counselling disguises a plot to kill old folks!! If I were not an agnostic, I would say, "God help them!! They will "get theirs" when they have to account for their selfish and evil behavior!"
"Bravo!!!
I have never read a better treatment of the lessons...."
Correction of previous post.
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