It was the best of care; it was the worst of care
My sister-in-law Sarah* passed away in February after a brutal 6 year battle with ovarian cancer. She was only 49 years old and left a 9 year old daughter and husband. Her sojourn through the healthcare system illuminated both the incredible triumphs and the glaring defects in American medicine.
Ovarian cancer is a very bad disease. Because the ovaries are located deep within the body, ovarian cancer usually produces no symptoms until it has advanced to stage III of four possible stages. At that point, the 5 year survival rate has dropped dramatically, from 85-90% at stage I to 40% or less. Survival depends on aggressive treatment with surgery and chemotherapy.
The fact that Sarah survived for 6 years is a testament to the determination and ingenuity of her oncologist. Every time Sarah failed a regimen, and she failed many, the oncologist had a new regimen in reserve.
That treatment is physically grueling, but the encounters with the healthcare system that are necessary to access the treatment represent additional hurdles. Anyone who has read my previous posts knows that I am very cynical about the system, but I even I was repeatedly startled by the callousness and insensitivity of some of the incidents. I would not believe some of them had I not actually been there to witness them. One of those incidents was the meeting in which the doctor revealed to my sister-in-law that her disease had returned, was incurable and was facing certain death.
All along I was very involved in her care. I had arranged her original surgery and carefully followed her initial treatment with powerful chemotherapy. As a general matter, though, I did not accompany her to doctor’s appointments, preferring to clarify the few instances of concern by phone conversations. Approximately a year after the diagnosis, Sarah and her husband were scheduled to meet with her oncologist to discuss test results from new biopsies; she was afraid of bad news. I expected that she was going to get bad news because her new symptoms and her recent PET scan results were very ominous. I didn’t want to be there, and tried to beg off.
Sarah begged me to come. “I need you there because I don’t understand the doctor.”
Sarah’s first language was not English, but her English was excellent and I was surprised that she thought she would have difficulty understanding.
She saw my confusion. “No, it’s not the language,” she said. “The doctor speaks too fast.”
I didn’t really understand the problem, but Sarah was so distraught, that I agreed to be there. I knew she was going to get bad news, so she deserved to have help handling it, if that is what she wanted.
Sarah was getting her care at one of the world’s greatest cancer centers. We met at the doctor’s office and waited more than an hour and a half before she appeared. The oncologist swept into the room, and with very little preamble began delivering the bad news at a rapid fire pace. I could see Sarah was confused.
“Wait a minute, wait a minute,” I said to the doctor. “I know what you are going to say, and I can’t understand you. Please slow down so Sarah can follow along.”
The doctor shot me a look of annoyance, but complied. She proceeded to tersely but slowly deliver the bad news. The biopsies showed that the ovarian cancer had returned less than 6 months after Sarah had finished rigorous chemotherapy. This was the worst possible sign. The fact that the cancer had returned so soon meant that she had failed the most aggressive chemotherapy in the arsenal. There was now no real chance to cure the disease; only a variety of treatments that might hold the cancer at bay for a few months or a few years.
The extent of the cancer’s return had not yet been established and that would help determine the amount of time she had left. An additional test was needed, and until those results were in, the doctor could not be more specific.
Sarah, already distraught, reported that she had been trying to get the doctor’s secretary to book to the test for weeks, and the secretary had not complied. Sarah did not know what to do next.
The doctor replied. “You’ve got to understand that we are very busy here. You’ll just have to wait until she gets around to it.”
“But I have cancer,” Sarah implored.
I would not have believed what happened next if I had not been there myself to witness it.
“Well, Sarah, everybody here has cancer, so you’ll just have to wait.”
Sarah burst into tears. The appointment was clearly over and the doctor moved to leave the room.
“I need to speak to you privately,” I called, as I got up to follow her out. I looked at Sarah. “With your permission, of course.” She nodded.
The doctor and I went out into the hall.
“Look,” I said, “I’m not going to ask you to cure Sarah. I know that’s impossible now.” I continued, “I don’t know how much time she has left, but for the remainder of that time could you please treat her with decency? She’s 44 years old, she has a 4 year old child, and she’s dying. Could you at least be nice?”
The doctor looked abashed. “Yes,” she said simply.
By and large, the doctor kept her word. We had a few minor incidents and only one major incident over the ensuing years. While the quality of the oncologist’s actions occasionally left much to be desired, the quality of her medical care was outstanding. She was clearly deeply invested in helping Sarah gain every additional day she could to raise her daughter. She never gave up, she never got discouraged, and she never ran out of treatment ideas, many of them cutting edge.
I have no doubt that she is a brilliant oncologist and her knowledge and commitment allowed Sarah to survive far longer than anyone’s most optimistic assessment. It’s difficult to reconcile that knowledge and commitment with the rudeness and disrespect of some of the encounters that happened along the way. In one way, though, it is not surprising. It is typical of our current healthcare system, currently combining brilliance, ingenuity and commitment with callousness and insensitivity.
* Not her real name
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Comments
When my surgeon broke the news that my cancer was Stage III I had trouble processing what he said and first starting crying that I would lose all my hair. Then it hit me and I looked at him and said, "You are saying that if I don't have this surgery and year of treatment then I will die soon -- maybe before Christmas?"
He said, "Yes, ma'am" and began crying. He excused himself and left me in the room with the nurse.
"He said, "Yes, ma'am" and began crying. He excused himself and left me in the room with the nurse."
Wow. That's an amazing story.
"And you wonder why people don't like doctors?"
No, I don't wonder. I don't like some of them myself. The reason I related this story, though, is because it illustrates the conundrum at the heart of American medicine: the doctors might be insensitive, but they know what they are doing.
My sister-in-law considered changing doctors several times, but when she asked for my opinion, I always discouraged her. The oncologist was committed, creative, and above all, she had repeatedly been right. It was worth tolerating her insensitivity for those reasons.
I completely agree- give me someone competent over smooth any day! I'd like to have both in someone I need to trust, but if I had to choose...
Do you think this odd combination of commitment and callousness occurs more often in specialties where there's a high level of relative futility? I'm thinking of the bad reputation that follows neurosurgery, for example. (As a friend who left a prestigious neurosx fellowship put it, "Most of my patients were either going to get better without much help from me, or they weren't, no matter what I did.") I would imagine it's human nature to try to develop a particularly hard shell when you engage with tragedy on a daily basis.
My daughter's pediatric orthopedic surgeon, OTOH, was one of the kindest, most compassionate people I've ever met, despite his lofty reputation--but most of his patients were going to get a lot better in his care.
"I completely agree- give me someone competent over smooth any day! I'd like to have both in someone I need to trust, but if I had to choose..."
The unfortunate thing is that we often do have to choose. Interestingly, some of the physicians with the best bedside manner have the worst clinical judgment. Their patients love them and don't realize that they are putting themselves at risk.
"Do you think this odd combination of commitment and callousness occurs more often in specialties where there's a high level of relative futility?"
My personal experience is that it occurs across all the medical specialties. Doctors become inured to suffering and they fail to think through what their indifference means to their patients.
She was treated like a farm animal, like an unthinking, unfeeling cypher during her most fragile moments. They saw her as an open bank account and a concentration camp victim, - pitied and ignored - which is what she looked like at the end. They were callous, uncaring, and often mean. And she had the money to pay for her treatment! I shudder to think of cancer patients dependent on the system.
Just FYI, if I am diagnosed with ovarian cancer, as I expect to be, I will not engage the US healthcare system for my care. Any other country, or just euthanasia would be a far more merciful choice.
You had a pretty unique opportunity when, as a physician, you got to see another physician at work. Mostly, our patient encounters are private - it's hard to know exactly how other physicians actually interact with their patients. We've had multi-D patient sessions several times over the years and I've gained much insight by observing my colleagues. Surprises both ways - docs interacting better and worse than I would have predicted.
Medical schools, as a rule, don't select future doctors based on their compassion and communication abilities (communicability?). They don't even select for conceptual intellectual skills. The admissions process values test-taking skills above all, which doesn't exactly translate to patient-care skills. How would we fix this? I think you can improve doctors emotional IQ but the earlier the better, preferably pre-med.
Your sister-in-law is young - I'm sure she looked into hereditary issues.
By the way - I read a great post today on Neurologica, Steven Novella's blog. He is such a clear thinker, as are you.
On the other hand, one of her oncologists was so impressed with Maureen that he asked her to speak at a conference with him, and I know his confidence in her bolstered her spirits and lengthened the quality of her life. She's been gone for eight years and I still miss her friendship.
I think it is a tough business, and not all of the difficult stuff is the fault of the medical professionals, but a product of a failure in parts of educational and professional standards that have been accepted instead of challenged.
"I think part of it is, doctors are not necessarily sensitive people."
That's certainly true. They're just regular people; some are nice and some are not. Unfortunately, though, they're not coming across as regular people. Many are coming across as so callous as to be almost cruel. I'm not sure why, but I do know that they are getting no satisfaction from it. Just like patients, doctors are deeply unhappy with the current state of medical care.
"She was treated like a farm animal, like an unthinking, unfeeling cypher during her most fragile moments."
I am so sorry to hear that. I don't doubt it for a moment, because I have seen it myself.
"Just FYI, if I am diagnosed with ovarian cancer, as I expect to be, I will not engage the US healthcare system for my care."
I wish I knew who does a better job. If we knew, we could copy what they do.
Have you been tested for any of the cancer genes? Has anyone recommended prophylactic therapy or more detailed exams?
"I think you can improve doctors emotional IQ but the earlier the better, preferably pre-med."
My personal theory is that people graduate from medical school as decent, compassionate people and then the decency and compassion are beaten out of them during residency.
"Sometimes it was difficult to understand how people could be so careless and/or rude. It was heartbreaking given how difficult the regimen of treatment is in the first place, for the people involved to behave badly, well that brings tears to my eyes all over again. I can't believe how awful people act, or that they seem to give themselves permission to act this way."
I've seen it many times, and I still don't understand it. Many doctors don't recognize their own behavior as unacceptable until they are patients themselves, decades into their careers.
I am a sociologist by training, and while I was quite close to a number of my employees over the years, an equal number found me hard and difficult. I do not respond well to incompetence, irrationality, and passive-aggressiveness. My manner is warm around competent people who act professionally, but it quickly veers to polite and cool when faced with people who can't or won't get their work done, are inappropriately emotional in a business setting, or focus on sycophancy over competency as a means of getting ahead.
I have some sympathy for doctors who are faced with giving bad news, again and again, to people they are treating, people with whom they share few common experiences and have little or no emotional bond with. You can care about someone in the abstract - I don't want anyone to die of cancer, and I'm sure all doctors feel the same - but that doesn't necessarily translate to an emotional connection to that person, or an otherwise improved ability to empathize with how they must be feeling at the news you are delivering.
The US armed services has a lot of formality and ritual surrounding the delivery of the bad news of a soldier's death. The power of history and institution is behind the deliverer of the news. The receiver of the news is grief-stricken, but not totally surprised. Everyone knew the risks.
The doctor, on the other hand, has no such formality, pomp or institutional support behind the delivery of bad news. He/she is not dealing with a person who has repeatedly braced themselves for the worst, but rather someone who is, even against all odds, likely hoping for the best. In this arena, it would be very very difficult to expect a mere mortal who has studied medicine - not psychology, not the world's great religions, just medicine - to know how best to act when delivering the news that the body has already been dealt a mortal blow. I couldn't imagine doing that, myself. I'm quite sure that some days I'd be better at it than others. I'd probably be better at it when the person I'm speaking to is more like me - analytical, stoic - than with a person who was emotional, confused or displaying other traits that I don't easily relate to, no matter how much sympathy I felt.
And may I respectfully suggest that this distinction lies at the heart of the problem?
Not to mention the total devaluation of therapeutic communication and true therapeutic relationships with patients. You and your physician colleagues are not reimbursed for time spent in counseling and educating patients. Nor are you able to restrict your practices so that patients receive the time they need in order to ask pertinent questions, participate in managing their own care and even processing and understanding the information and prescriptions they receive.
The same goes for nursing, which has also failed as a profession (my personal opinion) as it continues to demonstrate loyalty to employer over patient since job security and employment are always at stake.
But medicine and nursing are charged by ethics and statute to provide CARE to patients, and this care involves being therapeutic.
Therapeutic communication is a skill, taught in both nursing and medical curricula, and there are established standards of care and pracitce for its use in psychiatric/mental health care. But in every other clinical specialty, that aspect of care is missing, although the same principles and expected outcomes apply.
So it's incumbent upon both professions to take back this obligation and expectation of providing a professional service by whatever means they have. Demand reimbursement for it. Picket employers that refuse to provide for it in patient case load assignments. Add it to every clinical specialty in both professions. Demand that the Joint Commission add it to the patient safety goals.
Etc.
A therapeutic relationship produces better patient outcomes, and it makes a significant difference in morbidity, mortality, suffering and comfort.
Once again, Amy, thank you for sharing this and for presenting it so compellingly, if heart breaking.
I'm so sorry you and your sister-in-law experienced this, and I hope that some day, a tipping point will be reached, and a return of real therapeutic patient relationships will be the norm.
/rant
Is it a coping mechanism or an excuse? It depends on your point of reference (and how developed your social skills are).
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Sometimes even the best caretakers run out of patience. The misuse of concepts like DRGs and balance sheets have imposed unrealistic time constraints on practitioners. But I also agree with jimgalt that our sometimes our expectations of healthcare mechanics are unrealistic.
You provided the physician an a much needed opportunity to reflect on Sarah as a person rather than a task. A detached demeanor helps in objective problem solving but it is just part of being a healer. Sarah's doctor is a product of the times.
I shattered here. I'm sorry for your loss.
At the very least we must have kindness. I've been fortunate to have had relatively painless & mostly polite situations with health-care in general and interestingly, I've found better (more compassionate) health-care in small underfunded clinics rather than larger hospitals but it might be the scope & volume they deal with; it may also be geographical as it seems things are sunnier in the south. Perhaps the problem is that when the doctors start treating patients like "another cancer patient" instead of identifying them as an individual such as "Sarah* whose wellbeing is being inpeded by cancer" there's going to be an inherent disconnect that is patterned in a lack of concern or empathy? Could it be a defense mechanism for being both the bearer of bad news as well as the usher into the next realm over and over again. I think sometimes any of us could just use a gentle reminder to "be nice."
Thank you for sharing this. It also reminds me to schedule a check-up as ovarian killed my maternal grandmother.
You are in such a pivotal position to witness what we are going through as patients and caretakers. I am actually from a medical family - three doctors in my family, including my father who was a cardiovascular surgeon. But as soon as we become patients, somehow we lose that inside track.
I had many thoughts on what could improve the process during my time with my mother, and one idea was an advocate corp for patients with catastrophic or terminal illnesses. Someone who could be interpreter and advisor during the long painful process and keep the family from reinventing the wheel each time. Maybe that advocate corp could be staffed by oncology residents?
I'm torn between excusing the problem because doctors need to find some way to do their jobs without becoming emotional wrecks regarding every patient and agreeing with Nequals1 who suggests an entirely different paradigm.
My recent experience has been with veterinarians. Through several events in the past two years, I have learned that the kindest vets are the oncologists. Their patients are most likely going to die in the very near future, yet they are compassionate, loving and dispense hope without fear of reprisals. They are clear about what is going on and inform you about everything. Above all, they respected the choices their owners made regarding their care. Internal specialists, on the other hand, tend to be cold. They prefer their charts and numbers and almost never touch the animals. They push euthanasia when the animal is less than perfect or they think you are spending too much money on your pet. They see kidney disease, know where it is going to go and feel there is no reason to let the animal live for another year or two because in the end, the kidneys will fail, so get it over with now. And the neurology? Please! When my cat had a stroke, within 24 hours I was told he wasn't normal anymore, I should give up hope, and put him down. Actually, the vet on call tried to convince me that he had a brain tumor, without doing any tests.
I'm sorry if dipping into the animal world seems trivial, but I guess the most valuable lesson I learned is that love, hope and support can never do harm. Not to the patient and not to the doctor. I firmly believe that compassion is a good thing. Being cold is not brave.
"I have some sympathy for doctors who are faced with giving bad news, again and again, to people they are treating, people with whom they share few common experiences and have little or no emotional bond with."
I strongly agree that ability to bond with the patient (either because you really like the patient, or because you could see yourself as that particular patient) makes a big difference. Sometimes a doctor is the right doctor for one type of patient and the wrong doctor for another.
Even so, it seems to me that medicine creates a climate that is favorable for treating patients callously and disrespectfully. It does this in two ways. First, there is no penalty or even disapproval from peers for treating patients poorly. Second, during the most formative years of professional training, internship and residency, doctors treat each other callously and disrespectfully. The hospital (psychologically) becomes a place where the normal rules of human behavior no longer apply.
"And may I respectfully suggest that this distinction lies at the heart of the problem?"
I'm going to suggest something that may seem surprising. To the extent that your statement is true, it reflects what PATIENTS believe, not merely the way that doctors act. No doctor gets sued for not being nice (even though that may contribute to the desire to sue). Doctors get sued for not curing diseases, not fixing accidents, failure to produce the desired results.
In the pay for performance schemes that I have discussed in previous posts, performance is always judged by problems treated successfully, and money saved. Treating patients nicely or disrespectfully isn't included in the evaluation.
Insurance companies pay handsomely for procedures, and pay virtually nothing for talking to patients. Indeed, many insurance companies explicitly or implicitly calculate patient appointments as requiring no more than 7-10 minutes. How can anyone be treated appropriately in that small amount of time?
In a system under tremendous financial pressure, measurable results are paramount, and physician conduct is irrelevant. Those are our priorities as a society, and physicians respond to them.
"Our perspectives get warped, and it is easy to see how, for somebody who works with oncology patients, an existence in which "everybody has cancer" can pass for normal."
Exactly! I don't think the oncologist gave it a second thought when she said it. She did seem abashed when it was pointed out to her, though.
"Sarah's doctor is a product of the times. "
Sad, but very true... unfortunately for all of us.
If you got a bad burger at Mcd's you would return it and complain.
If you bought a pair of shoes and they came apart the first time you wore them, again, you would return them and complain.
You are paying these medical staff members to care for your (or your loved one's) body. Demand what you are buying!
I don't tolerate surly hairdressers, waiters, or car salesmen, and I certainly would not tolerate a Dr. who did not give me appropriate medical CARE.
Before you say I am naive, let me explain that I am a retired R.N., my mother was an R.N. and my father was a surgeon. My Father was in the military, as was I, and my mother resigned her commission to follow my Father's career and raise the 8 of us.
Although bad news was his daily grind, my Father never forgot his patients were human beings. I ran into many of them during my career at Walter Reed Army Med. Ctr. and every one spoke of his compassion and kindness.
So I refuse to allow any, ANY, medical personnel to forget why they are here, if they forget. They are here to CARE for us. Period.
Teach your children to respect themselves sufficiently to demand respect from others - even more educated others.
And keep up the good work.. The more we demand appropriate CARE from our doctors, the more they will realize what their job is. If they can't find kindness for their patients, then they need to go into research, or teaching.
And my condolences to your family. There are no words from a stranger that will heal your pain, but my prayers are with you today.
"I think sometimes any of us could just use a gentle reminder to "be nice."
Yes. I just wish that reminder could come from colleagues keeping tabs on each other, rather than from outraged patients and their families.
Thank you for your expression of sympathy.
"I had many thoughts on what could improve the process during my time with my mother, and one idea was an advocate corp for patients with catastrophic or terminal illnesses."
I think you're right. Patient advocates could make a difference in how patients are treated. That was essentially the role I was serving for my sister-in-law. Unfortunately, there's no money in the system (not to mention a total absence of institutional will) to institute a program of patient advocacy.
"the most valuable lesson I learned is that love, hope and support can never do harm. Not to the patient and not to the doctor. I firmly believe that compassion is a good thing. Being cold is not brave."
They should engrave those words over the entrance to every hospital!
"I really appreciate everyone's stories and perspectives here. "
Isn't Open Salon an amazing, thought provoking place?
Thank you for your kind comments.
When I was in the Air Force I worked in the hospital and flew Aeromedical Evacuation. I got to know some of the doctors and one of the things that I would ask is why they chose their field. The one that I found the most "real" was the pathologist. Her reason for choosing was that the people she saw were already dead and she didn't have to deal with their problems. It seems she was the type who would get attached and couldn't deal with giving bad news or pain and suffering.
As a side note. My brother was a cop in a big city red light district. After a few years of dealing with the lower life section of the population he couldn't deal with "normal" people. So I don't think it is limited to doctors. There are others jobs that have the same, but different, problems.