Wednesday, September 11, 2013

I Care About You, But I Hate What You're Doing: The Internal Struggles of a Primary Care Doctor

Gizabeth, a pathologist, just wrote about needing to maintain a "poker face" when she did a patient's biopsy, because she knew the diagnosis was metastatic cancer, and she knew it wasn't the right time or place to deliver that diagnosis.

This hit on something I've been struggling with for some time, now, and what I suspect many doctors struggle with (unless they've become completely detached):

Over these past five years as an internal medicine attending, there have been patients who have broken my heart, who have made choices I strongly disagreed with. Of course, as long as the choices are legal and not harming anyone but themselves, they can do that, and the point of my writing about these cases is not to debate these choices. It is to learn how to manage my emotions as both a physician and as a thinking, feeling human being.

How do other doctors deal in the immediate moment, and then in the long-term, when a patient follows a path you believe is wrong?

 I'm thinking of several cases (all details obscured or altered to protect true identities):

Several years ago, I took care of lovely, vibrant, fifty-ish year old woman, who in addition to living extremely healthfully, also saw a holistic provider. One appointment with me, we reviewed some test results that suggested she had cancer. I arranged for immediate referral to a wonderful specialist. The specialist confirmed cancer, and outlined a reasonable treatment plan that involved surgery and chemotherapy. About a week later, the specialist sent me a note that the patient declined all of it, and instead chose her holistic provider's plan of herbal remedies.

I was horrified. I called the patient and asked her if this was true. She said yes, that she thought of cutting and chemotherapy as worse than cancer, and would take her chances with the herbal tinctures, powders, teas, cleanses and energy healing offered by her holistic provider.


What would other doctors say to that?

I said, something along the lines that I respected her decision, but felt that I, as her primary care doctor, needed to inform her that she was choosing untested and unproven treatments, treatments that were not likely to help her at all. She said she would take her chances, and we hung up. That was the last I ever heard of her.

The above case is actually a combination of a few similar cases... It's not unusual for patients to turn down the 'Western medicine' treatment plan. Again, of course, the choice is the patient's, that is not debatable. What I struggle with is my own feelings. Because I know that when this situation comes up, when I KNOW the "Western Medicine' plan, though imperfect, is the patient's best shot at extending their life and quality of life, I know my heart beats like crazy, my palms sweat, and I have to work very hard to control myself, to NOT stand up and scream: "ARE YOU CRAZY?? You're planning on taking all kinds of potentially toxic and useless herbal crap when you have access to the best treatments in the world for this, and suffering people in every developing country would give anything to be here in YOUR place with the chance YOU have at a cure, and YOU are turning it down???"

Then, there's the opposite scenario.

I once took care of a lovely and also quite seriously ill man. He was extremely elderly and debilitated, with some dementia, enough dementia that all of his finances and logistics were managed by family members, though with enough insight and judgment to contribute to his own medical decisions. He had a terminal cancer diagnosis, on top of multiple medical problems, making his care quite complex. He was feisty at times. He had been asked to consider his palliative care and hospice care options on several occasions, and always became quite angry, usually ending up by shouting things like "I'm not going to let you kill me!".

He was admitted for serious, life-threatening complications related to his cancer. It was very likely that he would end up on life support without a chance of any meaningful recovery. He was asked again if he would consider hospice/ comfort care. He refused. His family, who had power of attorney, chose to abide by his wishes. He ended up near cardiac arrest and was sedated and intubated, and stayed in the intensive care unit on a ventilator for a very long time before he passed away, without ever having regained conciousness.

I don't need to tell many people in healthcare that this scenario is so common, I've seen in many many times. It plays out every day. It's just as heartbreaking to me, to see someone choose the cold, often prolonged ICU death, when they could have had the chance to go a homey hospice - or even home!- with the comfort of a morphine drip, holding hands with family members all around them, saying goodbyes or telling stories, until a naturally peaceful end.

Again, the choice is the patient's. But how do you deal with seeing this over and over again, trying to convince yet another human being that the choice they are making really, really sucks?

There are many other situations where my heart breaks. I hesitate to write about it, such a huge can of worms is the subject of abortion. It's with a heavy sigh that I even type this, as I know it stirs strong feelings and stronger words, pro- and anti-, either way. My point in writing is, again, not to debate the choice. In this country, thank God, the choice is up to the woman.

But I struggle, sometimes, to contain my own emotions when I am counseling a patient through her options.

I am pro-choice, and do believe that someone needs to provide safe pregnancy termination services to those who choose that. But at this stage of my life, I am personally, for my own self, pro-life. I did not choose to have any early risk assessment in my pregnancies, despite my own advanced maternal age. It wouldn't have changed mine nor my husband's decision; we agreed to carry on with any chromosomally imperfect fetus. We had even agreed to carry on with a pregnancy if it happened before we were married. We agreed that we have the financial resources and family support to care for a child, any child.

So, I struggle when I am counseling women who, like me, are financially stable, partnered, educated... who, in short, I perceive as having the resources available to care for a child, any child, special needs or not... and yet, they choose to terminate a pregnancy. In the room with them, I am professional; I smile kindly; I hand them the list of termination clinics; I counsel on birth control; I often see them after a procedure for followup.

But it is not uncommon that I tear up. I often need some space after one of these sessions to recover before I can go into the next patient's room. And I take it home with me. It makes me very, very sad.


How do other doctors deal with this? Especially, doctors who are mothers?

So many situations in medicine can affect us. We are all different in our beliefs and actions... But there must be situations that affect all of you, as healthcare providers. What are they? What touches you, and what do you do about it?

17 comments:

  1. It is often difficult and virtually impossible to not introduce our own biases into the advice that we give a patient. In regards to the example you gave about the cancer patient that chose holistic treatment, I would ask you to consider the following.

    I work at a cancer hospital and I came across a patient with metastatic endometrial cancer with peritoneal implants. She did have a hysterectomy but chose to not have chemotherapy. Instead, she changed to a vegan diet, does regular exercise and does juicing. Six years later she has stable disease that has not grown in size and she has enjoyed those six years of her life without the adverse effects of chemotherapy.

    It is important to keep an open mind and respect a patients wishes. In the western world, we have largely ignored eastern medicine because there is not enough evidence based research. Still, I think it holds some unrecognized value and as practitioners we should let patients know that we don't know if it will really help but we are okay with them giving it a try.

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    1. it is anecdotes like this that make it exceedingly difficult to have conversations about potentially life saving or extending therapy with scared patients. No one wants chemotherapy. No one. the writer was expressing concern for a patient who statistical likelihood of being cured of her disease by holistic medicine was less than that of western medicine, because, believe it or not, we greedy american doctors aren't withholding the cure for cancer so we can bill your insurance company for more Rituxan. The writer was expressing the frustration we all feel when the doctor and the patient want the same outcome (i.e. no cancer) but have very different ideas about the means by which to achieve it. It isn't disrespectful, it is a natural reaction to having watched similarly scared people have a bad outcome. In the palliative setting I very much encourage patients to explore alternative therapy if they desire. In the curative setting where the window to act is smaller, I would have a hard time telling a young otherwise health person to "give it a try".

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    2. And there are people whose disease doesn't follow the normal trajectory. There are woman with metastatic breast cancer who live for decades and men cured of metastatic kidney cancer after a course of oral TKIs. I'd argue its the biology of their disease, not juicing, that makes them statistical outliers.

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    3. Thanks Red Humor, I (Genmedmom) really appreciate your input, I also encourage holistic and alternative therapies when the stakes are not high... and also agree that everyone's body is different and this may lead to the statistical outliers that do well with nontraditional therapies. Really appreciate your weighing in given your speciality.

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  2. I can't tell you how many asthmatic kids I have whose parents smoke "outside." Meanwhile the whole room reeks & I will smell too when I get home after seeing them. I try to explain that the smoke sticks to the clothes, etc. when I really want to yell "WHY DO YOU THINK YOUR KID IS IN THE HOSPITAL?? Because of YOU!!!!!" No law against smoking but at least they can't smoke on our hospital grounds anymore :-)

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    1. ...and vaccine haters. They're always lovely, educated women who firmly believe they have "researched everything" and are doing the best thing for their kids. I have discussed it at length (as well as I can in the office) and use all the scary stories I can but it is certainly the parents' decision.

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    2. agree Grace, and I think it doubly difficult to hold back when kids are involved; I imagine you're in pediatrics. Not sure how you do it. Must be very stressful. I would love to hear more on this topic from the Pedi perspective... --Genmedmom

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  3. In my psychiatry residency, at the community clinic, it's the same thing! Of course the patients will continue to be depressed, psychotic, etc if they continue to abuse alcohol and drugs and not take their medications! I agree, it's extremely frustrating and non-gratifying. But it makes me much more appreciative and happy to help the patients who do follow my advice. Makes me wonder whether a more paternalistic doctor-patient relationship was a better model....

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  4. I could never work in the States, because of the way the system works, and the way the patient is boss (in my perception).

    Over here, in Holland, we can and should refuse to provide medically useless treatment. That old man would have had a DNR on medical grounds here. Do not resuscitate if there's nothing to resuscitate.

    I find myself having trouble with egocentric decisions, such as the smoking parents of asthmatic children. Or women having abortions because 'the time isn't right'' . But then again, if that's how you think about life and children, as something that should perfectly suit YOU, then maybe you shouldn't have children.
    I'm less worried about the 50 year old choosing, essentially, not to treat her cancer. It's her party. The only problem is, that they usually do come running back, by the time their prior choice didn't work out and the now advanced cancer is harder to treat or untreatable. (Thus also costing the tax payer more!)

    I'm bothered by the HIV positive male who turns out to have had a recent chlamydia infection: how many have you infected? Did they know about this?

    Over here they've been trying to implement market economics in health care. Because it worked so well in the US in terms of availability of health care for all, and in terms of keeping the cost low. Secondary effect is that patients become 'customers'. While I'm all for involving the patient in their own decision making, there is a point where I am going to say 'Do you want me to treat you as a client, or do you want me to provide the best care I can?'

    I do say that, actually, but not in so many words. Thinking about my work day; had I not challenged the patient's choice, the patient who needed to not be admitted would be in a psych hospital now... and the one who needed to be admitted may have been hanging by a rope. The first patient now has the opportunity to engage in the 'healing' aspects of everyday life, while the second one gets the high intensity treatment he did not realise he needed.

    Our government wants patients to be more involved in making the decisions, because 'paternalism' doesn't fit in the Dutch pretend equal mindset. The thing is, shared decision making isn't always best. I really hope we as doctors can keep the option to not become vending machines, but to involve patients as much as possible, while still being able to draw the line.

    And I've had many 'medical' DNR conversations in which I explained to the patient that resuscitation would only harm them, as far as we know. My experience with a medical DNR is that it takes the pressure off the family, and most patients are at peace with it.

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  5. I have also struggled with the above scenarios and am going into primary care. I have found that although the conversations can be emotionally taxing, I would rather be the one having them with the patient then on the periphery of the decision, as a specialist doctor just caring for one piece of the puzzle. These are the tough conversations and even if the patient makes a poor decision that causes more suffering and pain, at least they got the options presented to them. I have often wondered how to convey to the general public exactly how gruesome and futile a prolonged ICU death can be. I read an article a while back about how doctors die, and it just confirmed that there is a HUGE divide between how the medically educated versus the general public approach death. I think it stems somewhat from the public's distrust of doctors. When I rotated on hospice, I noticed some families would get very defensive when hospice was discussed and viewed it as the doctor "giving up" on the patient. It is sad because what they don't realize is that the doctor is offering a kind and gentle death, having seen the brutality that goes into codes and medical interventions. I agree some degree of paternalism would benefit the system, but don't foresee that in medicine.

    As for the public pro-choice/ personal pro-life view, I am in the same camp. I have been heart broken over terminations but have also been heartbroken to see a young teenager pregnant who has no social support and isn't prepared to be a mother. Those are the ones that get me. It is hard because I was a single mom for a time myself, and it was so incredibly hard, though for me it was the right choice. It is just troubling because this country does not provide enough for single mothers, in my opinion. It has been hard to help guide them through options such as keeping the baby vs adoption. Another frustrating scenario is an older patient who has had so many pregnancies it was a health risk- had custody of NONE of her living children- and continued to refuse sterilization.

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  6. I think it's a self-protective mechanism to build up walls and to become detached. I usually tell patients that it's my job to make recommendations to them based on the guidelines and my professional opinion, but ultimately it's their decision whether or not they want to accept the recommendations. At some point you realize as a physician that the patient is just going to do whatever they want, and you have to stop pushing them, because it's going to do no good. That's why motivational interviewing is so important, although who has time to do it?

    I am also particularly frustrated by the concept of the patient as a customer, because I feel that medicine in the US has devolved into exactly that. If the patient doesn't get antibiotics for his cold, he just go to a different provider who agrees to prescribe him exactly what he wants. I've had patients who insist in pointless tests and get furious when I refuse to order them just because they want the test run. At the end of the day it raises all our health care costs to run unnecessary tests.

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  7. THANKS so much to all who commented- I really appreciate it, and hearing that other docs have some of the same and some different struggles along these lines helps me to better deal with my own struggles. Thanks also for reading the whoel thing as I am just realizing how long it was. :) Genmedmom

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  8. I focus on the process and on trying to understand the patient's viewpoint and model. I did this in primary care and I still do it in hospice. People make all kinds of decisions and they're definitely not the decisions I would make, and I serve them best by remaining in relationship as long as I can really hear what they're saying.

    I have been deeply wounded by the experiences my patients have had trying to access abortion. I wrote about it years ago. Read the comments - some of them are searing. These women are judged and pushed and condemned from all around. In the years when I desperately wanted to be pregnant and wasn't, it was so so hard to stay connected to women who were pregnant and desperate not to be. My identity as a physician rests on my ability to be there for my patients, and i clung to that. I focused on the process; the outcome I work for is a therapeutic relationship.

    I do think patients are the experts on themselves and should be making their own decisions; that's not what's driving healthcare costs through the roof in the US nor is it what keeps our health measures so shamefully low.

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  9. Whoops, forgot the link to my blog post: http://twowomenblogging.blogspot.com/2007/08/first-do-no-harm-by-jay.html

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  10. You spoke about soo many issues that we all deal with daily. It's rough. Some days I just shake my head and carry on, others I cry, others I vent to family. Pediatrics definitely has lots of days where it is extremely difficult to identify with parents making what I deem "bad decisions" with their children. I try to remember at any given moment, especially when I'm postcall and more lenient, I'm sure many people wouldn't agree with decisions I make with my 2 year old. I try to remember my daily lived experiences are soo different than others and their lives are different than mine. We have different "baggage" (culture, race, sexual orientation, socioeconomic class, gender orientation, etc . . .) so of course we may do things differently.

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  11. Speaking of patients as consumers I came across a site today that allow you to order virtually any lab test you need without a doctor's order or office visit. I can think of a few circumstances in which having this option is helpful but who is going to counsel these patients on appropriate testing windows and interpretation of results? I can understand ordering a paternity test due to privacy concerns but ordering hep b Sag vs. IgG vs core Ab? That was hard enough to understand in med school.
    In all fairness there are apparently corporate uses/accounts ex. Drug testing, for when a speedy result is needed.

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