Let's say you go to Best Buy, and ask to buy a computer, and the store person says, "Do you want SDRAM or GDDDR5 Ram? Do you want a Thunderbolt port or a Firewire port? Do you want a dual core or a quad core processor?" Unless you're a total computer geek, you're going to feel lost, and unable to make these decisions. On the other hand, the store person could say, "What do you want to do with the computer? Do you need it to be portable? Are you going to use it for intensive graphics or gaming? Based on your needs, I think the best option for you is..."
Similarly, I was taught to elicit patient and family goals and preferences, and as the medical expert, offer a recommendation. "Based on what you've told me about your mother - her preference not to live on machines - it seems to me the best course of care is most likely to focus on keeping her as comfortable as possible. The best place for that care is in a setting like our hospice, not this ICU."
However, a 2009 study by Doug White (formerly at UCSF, now at the University of Pittsburgh) has thrown into question the practice and policy of major Critical Care Societies of routinely giving a recommendation.
Doug and colleagues interviewed 165 surrogates of seriously ill ICU patients. He showed them a video tape of a physician surrogate interaction with two possible endings. In one ending the physician gives a recommendation, in the other, the physician does not. For a small amount of context, the surrogate is the daughter of a 72 year old man with a pneumonia and kidney failure hooked up to a breathing machine in the ICU for two weeks. I don't have the actual video of the two possible endings, so I've converted them into this video of my favorite talking bears. In this video, the ending without a recommendation is first, followed by a short pause, then the ending with the recommendation. For the actual study, the order of the endings was randomized (some saw the recommendation first, some saw the video without the recommendation first).
Here are the findings from the study:
- 56% preferred to receive a recommendation. Reasons given included: it's the physician's role to give a recommendation, it lifts the burden off surrogates, and it's the physician's responsibility as the medical expert.
- 42% preferred not to receive a recommendation. Reasons given included: it's not the physician's role to give a recommendation, it could be detrimental to the relationship with the physician if there is disagreement, and it would hinder the families ability to come to a decision on their own
Still, most likely there are probably a minority of surrogates who do not and will not appreciate a recommendation. The take home lesson for me is that a recommendation should not be routinely given. Rather, a recommendation should be offered, and the reasons for or against, or for ambivalence about the recommendation should be explored.
What do you think? What should we do? Would you want a recommendation? What would you do if your doctor asked you? (too much Dr. Seuss, I know, sounds like the ending to Cat in the Hat. What can I say? the kids are 3 and 5).
by: Alex Smith
8 comments:
This subject is always topical. I think the recommendations of the estimable and long-serving former editor of the New England Journal of Medicine, Franz Inglefinger, are the best I have ever read on this topic:
"A physician who merely spreads an array of vendibles in front of the patient and then says "Go ahead and choose, it's your life," is guilty of shirking his duty, if not of malpractice. The physician, to be sure, should list the alternatives and describe their pros and cons but then, instead of asking the patient to make the choice, the physician should recommend a specific course of action. He must take the responsibility, not shift it onto the shoulders of the patient. The patient may then refuse the recommendation, which is perfectly acceptable, but the physician who would not use his training and experience to recommend the specific action to a patient - or in some cases frankly admit "I don't know" - does not warrant the somewhat tarnished but still distinguished title of doctor."
NEJM. Arrogance. 1980; 303: 1507-1511.
As an educator I believe we need to give our clients and their defined families the education to make the best decision for their family situation. We need to take into account what their goals for care are and how the define quality of life. We need to consider the delicate cultural beliefs, the family dynamics, and who are the designated decision makers are. Most important is to have the POLST conversation with our patients so it helps not only the family decision makers but the healthcare provider teams goals for care for the patient and their family situation. This is always a delicate situation. If the family asks what would you do, I always frame it from my own decision making influences (my knowledge, prior experiences, my own family values, norms, culture, beliefs, and my own feelings of what quality of life means to me as well as other family members). I can only experience what my patients and their defined families experience from my own world lens-not theirs and I have to keep that in mind with each encounter.
Ideally, the patient would have discussed this specific choice with his surrogate decision-makers and stated what she wanted. Surrogate decision-maker can follow one of two paradigms: covenant or contract. The patient should have indicated which she prefers. To refine the choice, the patient could have indicated how much leeway, if any. Assuming none of this was discussed in the subjects Doug White asked, my question is whether the surrogate was actually faced with a life-determining situation. Survey outcomes can be different, depending on whether the decision is “hypothetical” or urgent. Sometimes there is NO time to think about the decision for a while; and to do so is the same as deciding NOT to withdraw life-sustaining treatment. “To Delay is To Deny.” What do others think of physicians who refuse to give an opinion, when asked, especially for the ultimate existential of all decisions: Here is the scenario: A patient requests Physician-Assisted Dying where is it legal and instead of discussing, WHY NOW? The doctor says, “Only the patient can decide when the time (to die) is right.”
The omission of a discussion, and possibly a recommendation, could lead to a premature death. Professionally, I believe patients need professional input so there is a balance between autonomy and safety/protection from making irreversible and harmful decisions. (I am making a video on the issue of premature dying.)
Stanley A. Terman, PhD, MD, Medical Director, Caring Advocates. www.CaringAdvocates.org, drterman@gmail.com.
This entry clearly demonstrates the difficulty and the beauty of practicing medicine. In reality, there are probably more than two choices and that any given person may want something different. This may, as in a previous posting be related to ethnicity, but may also be due to life experience, fear, trust, and is likely to even vary within a family. I'm pretty sure AN approach cannot be easily delineated by research, and that it cannot be boiled down to a fast fact. Instead, at best, creating trust and understanding with a patient and a family over time MAY be the only sure approach, but the path to death is unpredictable. In the best circumstances, particularly with patients' families I have been lucky enough to know over time, I often will say,
"you are not making this decision, she already made it so that you did not have to."
My current position is not as a doctor in ICU, I work in a hospice and I think that the situation is very different, because the location helps to see this in a different ways, expectations are very different in a hospice, and i think that the position of representatives who do not want an advice from their doctors is the extreme position of the autonomy way in the self-care management.
Doctor have moved from the sustitute mind of the patients (paternalism) to the current position in many places, as a technical worker who exists because there is not a machine to perform their skill...by now...
I think that this is a social wave, one old friend, doctor, was explaining rightly in a palliative care meeting, he explained his own long experience: "Years ago relatives and representatives used to tell me about the patients: doctor save him/her, do all you can...Now they tell most of the times: doctor the first matter is to "avoid any kind of suffering"
I think that patients and relatives need our advice and counselling. I think that doctors must not reject this work, as important as prescribing drugs. I think that you can use clinical records to save your work in case you face any claim, and I think that accept the other way (keeping silence)is a bad defensive activ way of working that destroy my vocation and the confidence we need eachother. Other question for other blog, is the worldwide crisis of the faith in eachother human people suffer for years...
I am a family physician and hospice medical director that deals with this daily and has opportunity to speak to nursing and physician groups on this topic. To paraphrase the blogger, I usually describe taking my car to the mechanic because of a noise when I am driving, to be offered the choice between replacing a worn wheel bearing (several hundred dollars) or trying to repack the bearing with heavy grease (less expensive, duration of "fix" difficult to estimate). My first question to the mechanic would be "...if this were your car, what would you do?" This is a fair question, and one we are, indeed, obliged to answer to the best of our abilities, recognizing and pointing out our own biases.
The salient point, however, is that patients/surrogates who don't want the advice won't ask for it. When offered it, they will decline it. The most difficult adjustment we physicians have to make in palliative medicine is asking instead of telling, or, having asked, being quiet long enough to hear the answer. Rather than making a unilateral decision about whether or not we will offer a recommendation, why not ask the patient or surrogate whether or not they want such advice?
I think the most fascinating part of this study is that the script used actually has the surrogate request a recommendation:
Daughter: "Yeah. So, what would you do if you had to make this decision?"
So the question asked by the study seems to be whether some people feel it is overstepping our boundaries as physicians to give recommendations to individuals who request it. Apparently, a sizable population of surrogates think we shouldn't be giving these recommendations when asked for them.
It's not hard for me to imagine a clinical scenario very similar to this. During a family meeting, a clinician and the patients son & daughter meet to talk about next steps. The daughter asks for a recommendation and the physician gives it. The son becomes quiet, internally angry that the recommendation hindered the entire "family’s ability to come to the best decision" (these were the actual words from one participant in the study).
So, in the end, this does more to answer the question of what to do when a family member asks for a recommendation. The answer is apparently to make sure the other family members also want to hear it, and if not, why not.
Thanks Alex,
I love this study and this post.
I think about it in terms of "decision quality" - defined as "an informed patient making a decision concordant with their values."
This can still be achieved in the form of a recommendation and a recommendation may even help patients and familes overcome the affective and self-efficacy barriers involved with late life decision making but a recommendation should only be made after making every attempt to inform and every attempt to understand their values - otherwise you risk making a value discordant recommendation to an uninformed patient...tell that to the judge.
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