I had a patient this week that really screwed up his medical care when he experienced a predicted side effect of curative chemotherapy. Despite clear instructions and access to every number my partners, my staff and I have, including office, triage, cell, and answering service, he did not reach out. Day-by-day he lay in bed, as he grew weaker and multiple systems failed. No one contacted me. Finally, he sent an email to a doctor 3000 miles away, in California. That doc forwarded the email to me. I sent the patient to the hospital.
Did we rush to the emergency room, to salvage his life? Of course. Were there innumerable tests, complex treatments, multiple consults and an ICU admission? You bet. Did I patiently explain to him what was happening? Yes. Did I look him in the eye and tell him that I was upset, that he had neglected his own care by not reaching out and in doing so he violated the basic tenants of a relationship which said that he was the patient and I was the doctor? Did I remind him what I expect from him and what he can expect from me? You better believe it, I was really pissed!
The practice of medicine for most doctors is fueled by a passion to help our fellowman. This is not a vague, misty, group hug sort of passion. This is a tear-down-the-walls and go-to-war passion. We do not do this for money, fame, power or babes; we do this because we care. Without an overwhelming desire to treat, cure and alleviate suffering, it would not be possible to walk into an oncology practice each morning. Therefore, just as we expect a lot of ourselves, we darn well expect a lot out of our patients.
I know that patient autonomy gives each person the right to decide what path they wish to walk. I really understand, after 27 years in practice, that not everyone is going to listen to me and that I occasionally fail or am wrong. I welcome a healthy debate and ongoing interaction about decisions. In the end, the patient is in charge and I am just the guide. That does not mean that I am not going to try to do the best for every patient and that certainly does not mean I do not care.
Often when a patient makes poor and arbitrary changes in medical care, it reflects denial and an attempt to maintain control. These are critical needs and must be respected. However, there is a line which if patient or doctor cross, tragic, unnecessary things occur. The dread disease gives not quarter, even if I am tired, distracted, depressed or ignorant. Cancer demands my complete commitment to its destruction. It demands the same focus on battle from patients.
Therefore, when patients stray without good reason, I get anxious. When they make bad decisions I get upset. When they needlessly modify treatment, my head begins to spin. When patients yell at my staff, while I understand their stress, I worry they will undermine their care. And because this is oncology and because the stakes are so high, in the most direct and supportive manner, I will let the patient know.
I think one of the differences between young doctors and us old salts, is we how express such anger. Newer docs are full of fresh vim-and-vinegar passion and so upset by the harm that is about to occur, that they raise their voices and may berate their patients. Senior docs know, because they have fallen into the losing-your-temper trap, that this backfires. Patients, already under stress, cannot cope with a shouting off-the-wall physician. Experienced voices instead drop, words slow and we sit down on the bed and touch a hand, rather than pace and punch the wall. Do not mistake controlled continence for calm or uncaring; inside we are seething, fuming, on fire. I tell you, until the day we die, we really get pissed!
Beating difficult disease involves an unwritten contract between patient and doctor. Each has their role, and the patient has much more to lose by violating that agreement. If you do not like the treatment, make a change. Let the doctor know, negotiate a new plan, change caregivers if you need. But, once you set that plan, once the two of you decide on the steps to be taken, it is up to you and your doctor to each do their jobs. Cancer cannot be beaten any other way.
James C. Salwitz, MD is a Medical Oncologist in private practice for 25 years, and a Clinical Professor at Robert Wood Johnson Medical School. He frequently lectures at the Medical School and in the community on topics related to cancer care, Hospice and Palliative Medicine. Dr. Salwitz blogs at Sunrise Rounds in order to help provide an understanding of cancer.
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There is some innate goodness of people who go into oncology. At the time when most oncologists practicing today made the decision to become oncologists, there was no chemotherapy concession. Most of them probably had a personal life experience which created the calling to do battle against the great crab. At the time people make their most important decisions in life, people are at the most idealistic period of their lives.
In their environnment, it is mandatory from a purely human standpoint, to take refuge in the smallest of successes. The shrinkage of a tumor lasting four weeks. The temporary relief of pain. Just like a trauma victim will love forever the surgeon who fixed his/her compound fracture, the cancer patient feels genuine, heartfelt gratitude to the oncologist during periods when the cancer crab retreats.
But the oncologist knows it is just the eye in the hurricane. The eye passes all to quickly, and then the patient is beaten by the back half of the storm, which is more deadly than the front. So the oncologist only rarely gets to share in the celebration of remissions. He/she’s already worried about the day to come, when the really bad news needs to be delivered to the patient and the remission is instantly forgotten.
But even bettersweet victories are better than no victories at all. So oncoloigsts will still give more chemotherapy than otherwise warranted, even without the financial incentives. Some oncologists prescribe chemotherapy drugs with equal efficacies and toxicities. I would imagine some are influenced by the whole state of affairs, possibly without even entirely admitting it. Social science research shows that people can be biased by self-interest without being aware of it. There are so many ways for humans to rationalize their behavior.
I think the key is to begin to pay oncologists (and other specialists) more for talking to and listening to patients, and less for treating them with very expensive, very aggressive treatment. The solution is to change the system. Take physicians out of the retail pharmaceutical business and let them be doctors again.
My own suspicion is that if a patient under these circumstances is not following the doctor’s plan of care, there is a reason. I don’t mean to suggest that the doctor isn’t “right,” insofar as “right” means that he has prescribed the “correct” treatment or course of action based on considerable experience and training … but as the daugher of a woman who eventually took her own life to end her suffering from terminal cancer, I have seen a patient’s failure to comply from a cancer patient’s point of view.
Here are a few reasons why a patient may not be following “instructions.” (Please understand that I don’t suggest ANY of these is the reason why this patient didn’t follow instructions as described in the post above, but it’s important for a doctor in this situation to consider the possibility of these.)
(1) The patient does not want to try to reach out to/communicate the doctor because past attempts to do have been unsatisfying.
For example, a drug or treatment has been prescribed that the patient is finding particularly difficult to stick to … it causes extreme nausea, or extreme headaches, or extreme sleepiness or dopiness. The patient has in the past tried to explain that the particular side effects are too much to cope with and to ask about a possible alternative treatment, and has been shot down (perhaps without patience or kindness) by a doctor who implies that the patient should “stop whining, suck it up, and fight.”
A patient, too, may have tried previously to contact the office about something that was important to him/her, only to find that a phone call was not returned, or that a message was simply conveyed back from the doctor through a bored-sounding receptionist who was unable to answer any follow-up questions, and so on. I had a doctor once who gave me a prescription for (I thought) a surprisingly small amount of pain medication following melanoma surgery, but who assured me when I questioned this that if I found that I really needed more, I could simply call her and she would immediately call in the prescription to my local drugstore. On Saturday of a holiday weekend, a few days after surgery, I woke with an excruciating throb above my elbow (the growth had been on my upper arm). I promptly called the doctor’s office to say that I was still having pain and would like to have the pain meds extended. I left a message with the answering service. Half an hour later, the answering service called me back to say they had spoken with the doctor, and she felt that I really should only need ibuprofen at that point. I was furious and embarrassed — and I felt that I had been absolutely lied to by the doctor in the first place. I was in pain all weekend, and when I saw my doctor the following Tuesday, I told her angrily that I was not a drug addict, had never had a substance abuse problem, and that when I said I was in pain and needed something for it, that was the honest truth. With absolutely no argument — as if all I’d needed to do was ask — she extended my pain meds for two weeks. I stopped taking them after two days because I didn’t need them anymore. But I’d had to get through three miserable days when I really had needed them without anything. Would I have trusted this doctor in future if she had encouraged me to “call if I needed anything”? No.
And God forbid the patient has done any significant research of his/her own into his/her illness and has wanted to talk about whether a particular study or studies in JAMA or other respected publications might have bearing on an alternative treatment. Nine times out of ten, such a conversation will be abruptly terminated by a doctor who is impatient with patients who are wasting his/her time with “some damn fool thing they read on the Internet.” No attempt is made even to listen for a few minutes to determine whether the patient is asking about something from a “legitimate” source.
(2) The patient does not want to reach out to/try to communicate with the doctor because the patient has serious philosophical disagreements with the doctor about what the goal of treatment should actually be.
My mother, in her battle with several unrelated and aggressive late-stage breast cancers, lived in a state with a right-to-die/assisted suicide act. Early in her treatment, although she was determined to fight for as long as she felt she could, she was terrified that she might not be able to “cope” with the probable pain and distress at the end of her life. She tried to talk with her doctor about this, and about her desire to have the lethal prescription prescribed so that she’d have peace of mind that if things got bad enough, she could use it.
The doctor, whose own religious beliefs did not countenance such a course of action, railed at her about how inappropriate it was even to consider the possibility of ending her own suffering at any stage, and insisted that hospice would be more than adequate to manage any pain my mother might experience. When my mother tried to describe endless accounts she had read on the Web by family members of other cancer patients, describing the last days of their loved ones’ lives, even in palliative hospice care, as painful, the doctor rolled her eyes and brushed this off.
On another occasion, my mother, the most straight-laced, prudish, upstanding person you can imagine, wanted to explore the possibility of using marijuana to manage some of her nausea. Again, medicinal marijuana was legal in her state with a doctor’s prescription, but again, the doctor refused to prescribe it and told her that if she tried to find it on her own, she’d be leaving herself open to criminals and street scum.
3) The patient does not reach out to the doctor because he/she did not get to choose a doctor whom he/she either trusts or “clicks” with personally.
Like most Medicare patients in a rural setting, my mother had basically no choice of doctor … she had to seek her oncology care from the only doctor in her vicinity who was accepting new Medicare patients at the time she needed a doctor. She found the doctor abrasive, impatient, bossy, and unwilling to spend time listening to what concerned her. My mother had been a Web researcher for years, and she worked hard to educate herself about her illness and possible courses of treatment. She went to her appointments “armed” with months’ worth of lab results to discuss what the numbers showed was and wasn’t working. Her doctor brushed her off, every single time … the attitude was, “You don’t need to understand or agree, and I don’t have time to explain to you why other options aren’t the right ones in this case. Just shut up and do what you’re told.” My mother was so frustrated and disappointed and terrified, and because the relationship she had with the doctor who treated her was one she’d been compelled to accept rather than one she’d been able to choose based on a good personality “fit” and mutual respect, it became adversarial rather than helpful.
It is difficult, in these circumstances, to speak meaningfully of a “contract” between the patient and the doctor.
(4) The patient does not reach out to the doctor because he/she is afraid that the doctor will be angry because of something he/she did or didn’t do.
I am a basically healthy but overweight middle-aged woman. I put off seeing my doctor for months every year because I know the doctor is going to be “upset” with me about the actions I have not taken to maintain or improve my own health.
Imagine how much harder this must be for a patient who is struggling with a serious illness. Because the stakes are higher, the consequences of noncompliance are more serious … and the doctor’s anger or impatience likely to be more intense. Often, patients feel trapped between an inability to do what the doctor “wants” (for instance, because of unacceptable side effects or impact to the patient’s quality of life) and the need to win the approval of the Authority figure who stands between them and death. It’s an enormously difficult position emotionally for a very stressed and frightened person to be in.
There are probably other reasons as well … but these are all issues that I have experienced directly as a patient, or seen a loved one experience. So please, angry doctor, understand that a patient whose behavior is angering you may be responding to stimuli you are blind to … please go gently. Please listen. Please do not do or say anything to “punish” the patient. Please, in short, try to be more than human. It’s not reasonable to ask … but pain strips us of all reason.
Paula, WOW! what a thoughtful answer to my earlier question of “I wonder what the patient’s side of your story would be.”
In the course of my work I get to see the large patient populations and an overview of speciic cases. A lot of time is spent looking at super-utilizers.
Things I wonder about in this case:
1. Was the patient, as mentioned earlier, perhaps “out of it” due to effects of the chemotherapy or other medications.
2. Was the patient suffering from a mental illness? Someone with severe depression may lack the motivation to respond to their own decline. They are, as another comment noted, tired of it all.
3. Was there something else going on with this patient that would have caused such a situation? Were they sick with another chronic disease, undergoing some severe emotional stress, had a falling out with a loved one, or anything else that would cause them to stop caring? There are also some people that simply don’t want to be a bother to a doctor, even when they are worsening.
4. Where was the family? Was there nobody else who could have picked up the phone after observing clear decline?
I had two close family members die of cancer and in both cases we observed how the disease and the medications appeared to be impacting their ability to think clearly. In one case there were emotional changes and abusive behavior that were painful to endure. “That’s just the cancer talking,” we would remind ourselves to press on.
Finally, as with the messiness that is a human being, sometimes very sick people will do very dumb things because they are still just human beings.
This is from a patient ofvminewho i sent this to;
Now you want to hear why the patient is angry?
“Despite clear instructions and access to every number my partners, my staff and I have, including office, triage, cell, and answering service, he did not reach out.”
So, instructions on when to reach out, who to call and when, and what to look for, were not clear enough, regardless of what the doctor thinks.
“Finally, he sent an email to a doctor 3000 miles away, in California.”
This doctor should be ASHAMED that a doctor 3000 miles away was more accessible than he was! Clearly the patient wanted to reach out, but something about the doctor prevented the patient from doing so.
“You better believe it, I was really pissed!”
Sounds like he’d be the first guy I’d call if I had a question about something, especially if I was afraid I’d be wasting his time. Or, maybe not.
“Therefore, just as we expect a lot of ourselves, we darn well expect a lot out of our patients.”
And patients expect a lot out of doctors, and most of the time we’re not getting it.
“Often when a patient makes poor and arbitrary changes in medical care, it reflects denial and an attempt to maintain control.”
No, it doesn’t. It reflects a lack of belief in the care plan, which stems either from poor communication, a lack of results, or (this IMO is the most common) the doctor not bothering to study a patient’s history, and prescribing their go-to regimen regardless of what the patient has already been through – I don’t know about cancer, but it sure as hell works that way with other chronic diseases.
“The dread disease gives not quarter, even if I am tired, distracted, depressed or ignorant. Cancer demands my complete commitment to its destruction. It demands the same focus on battle from patients.”
OMG, this guy is full of himself. Again, I can’t imagine he’s particularly approachable.
“Therefore, when patients stray without good reason, I get anxious. When they make bad decisions I get upset. When they needlessly modify treatment, my head begins to spin. When patients yell at my staff, while I understand their stress, I worry they will undermine their care. ”
No, he does not understand their stress, or he wouldn’t react this way. Why would a patient willfully undermine his/her own care? Understand that, then you can say you understand the patient’s stress. It sounds to me like this doctor is speaking out of ego – he doesn’t sound like he gives a crap about the patient, except that he needs to defeat the disease, to WIN, for his own self-importance. This is the kind of thinking that leads us to a fate worse than death, when we should be dead but are kept technically alive by machines.
“Do not mistake controlled continence for calm or uncaring; inside we are seething, fuming, on fire. I tell you, until the day we die, we really get pissed!”
Congratulations on your self-control, Doctor.
Wait – what were we talking about? Oh, that’s right – a PATIENT fighting CANCER. So sorry you’re upset, Doctor. You might want to try a little empathy.
Dr. Salwitz speaks of “an unwritten contract between patient and doctor” with respect to what is the role of the physician and what the patient’s role is.
What exactly are the terms of that “contract”? Does each party to said contract understand and agree their respective roles? Was there ever a discussion between you and you patient as to your respective roles and what those roles looked like under circumstance such a the scenario you described in your post? Did you ever tell the patient that it was OK for them to “challenge” you on your treatment recommendations? Did you perhaps suggest ways that the patient (or their care giver) should exert themselves to get your attention having waited for 60 minutes before you saw them in the office or chemo lab?
If you could demonstrate all the above then I would be more likely to cede your point. But the simply truth is that patients, particularly facing life threatening conditions, are very unlikely to challenge their specialists in the way you suggest. When my wife and I challenged her medical oncologist at MD Anderson he asked who was the “quarterback” …he or we. You can bet – since he is the world’s best – we shut up. Even healthier patients are fearful of confronting their doctors. It’s simply unrealistic for patients – socialized for years by the medical profession to assume the passive sick role – to suddenly (even in the face of death) become proactive and assertive. It just doesn’t happen. I am sure you understand this.
That patient – rightly or wrongly – laid in bed at home because 1) they may have been “out of it” and 2) they were fearful of disturbing their busy doctor – busy saving lives “more important” than theirs. You patient was probably trying to be accommodate you as so often happens. I know because I and my wife have been and am in that same spot right now.
What I would suggest to every physician out there is to spend a few second to explain to the patient and their care givers how you would like your personal interactions to work. Tell them what you want and need in order to help them. Teach they a code word they can use with you when they need you to stop and explain something in terms they can understand. Put yourself in their shoes.
I know you are busy and don’t get paid to talk to patients – or so I am so often told. But if you want to really make a difference on a human level with people – and you want a shot at better outcomes – just talk to them the same way you would want a physician under the same circumstances to talk to your mother.
Steve Wilkins, MPH
Physician-Patient Communications Expert
Mind the Gap
Is it possible that your patient’s behavior reflected his desire to throw in the towel?
Kudos for your humanity, Doc. During my own cancer tx, I fell under the tender ministrations of a guy I came to call Doctor Drive-By because he spent so little time actually *talking* to me. I would certainly have called him (and did) when experiencing any side-effects, expected or not. The response was enough to make ME mad, but I got over it.
There’s a gaping hole in your narrative, though – what your patient said was his thinking behind acting like a dope. Because, given the story you’ve told, “dope” is pretty right-on, IMO.
It’s refreshing to hear a real and honest opinion on this topic. In this case it sounds perfectly natural for you to be angry…You’re putting your life’s work into helping people, and it’s only normal that you would expect that they hold up their end of the bargain. This is true for any job really, but becomes especially important when one’s life is on the line.
What is this ‘bargain’ you speak of? There is no bargain. This doctor exhibits no skills at interpersonal relationships with an understanding of this client’s life situation and personality. There are those who will not ask for help for various reasons (culture, age, family background). I would be pissed if a doctor came to give me a lecture in the ICU. What a jerk!
I wonder what the patient’s side of your story would be.
Wow, I never thought of how doctors feel about their patients, Thanks for sharing that story.
Yes, it’s frightening, actually.
I’d be a lot more enthusiastic about your message if there was some mention, any mention, of the patient’s support system. I suggest that there is a problem when you expect responsible self advocacy from a chemo patient, doubly so from a chemo patient experiencing serious side effects. Perhaps some of the phone calls you expected could have come FROM your office, perhaps to the patient’s family. Perhaps the patient education you undoubtedly performed was misdirected, if it had a single point of failure (the chemo patient). How does the money spent on emergency care, in this failure, compare to money spent on ensuring the patient has the support required to succeed through fallible treatment?
From a cancer survivor and medical student.
I have so much respect for your insight.
We are all human—You cite this so well when you mention the calm voice of the veteran physician on the outside in spite of the anger on the inside.
How do you balance your anger with noncompliance (is it fair to frame it like this?) from some of the likely emotional and psychological confusion which so many of your patients might have?
How often is emotional and psychological support part of the system of compliance for something like managing predicted side effects?
Is it even fair to say that this was in part a deterrent in seeking care?
How much empathy is too much? How do you handle this productively?
My questions abound when I think about how complex this interaction really is…(complex being the understatement of the year.)
As a stage IV cancer patient, 35 year health care professional, and quality/patient safety zealot, I can only say kudos for your incredible insights. You have hit the nail on the head with this post. In my 20 month cancer journey (so far), I have had exposure to oncologists like you who “get it” and those whom, unfortunately, will never understand disease from the patient’s perspective. Finding a caring, compassionate, knowledgable and humanistic provider is not a given…..especially in oncology, where occasional thinking outside the box of “standard of care” should be a routine expectation. Evidence based medicine is a great aspiration – but what can often separate the good from the great practitioner is shared decision making with the patient when the evidence runs out, as it often does in cancer. Keep on doing what you are doing for your patients………..
It makes me sad when hearing about patients and/or physicians getting mad at each other. I wonder if this is part of why a team approach works better than a solitary physician-patient relationship. Patients often have such fear of not having medical care when they are in vulnerable states of mind that they don’t feel free to be frank with their “saviors”. (This has been studied.) And physicians often don’t give the impression they have lots of time to talk, anyway. Patients value the expertise of their physicians and don’t want to challenge it, but they may need to have additional conversations, maybe in a different setting, that will help them “own” their plan so they can really follow through with what they’ve already (implicitly or explicitly) agreed to do. Dealing with serious illness and death is fraught with all kinds of emotion for both patients and those whose job it is to help them through it. The more help and resources to deal with it, the more likely there will be something that is an exact fit for what the patient needs in those difficult times.
Great article. But if you are angry now, just wait until your reimbursement is tied to “quality”, adherence to protocols and outcomes measures! How more”pissed” will you be when you are financially penalized for taking on the challenge of treating patients who do not communicate with you or even let you know they are not following treatment recommendations. At this point you still get reimbursement for seeing that patient in the ED with a complication of therapy. In the future, you will likely have to attend to this patients complications without compensation.