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When patient and provider disagree; Letting’ patients make bad’ choices
Ethics committees can help when patient and caregiver disagree
If you ever find yourself struggling with the ethical implications of permitting a patient to make a bad medical decision, maybe you should think semantics before you weigh ethics.
Courts rule tirelessly that competent patients have the ability to make their own decisions, regardless of consequences. That being a given, do physicians really "permit" patients to make choices? And who decides whether that choice is "bad?"
At what point does the physician surrender to patient autonomy and be satisfied that he or she has fulfilled his or her ethical obligations?
"It’s my observation that the mere description of a patient’s decision or choice as unwise’ indicates the caregiver and the patient have different values and/or the caregiver doesn’t fully understand the patient’s reasons for making a decision viewed as inappropriate," points out Paul B. Hofmann, DrPH, FACHE, president of Hofmann Healthcare Group in Moraga, CA.
"Similarly, talking about permitting a patient to make an unwise choice is value-laden because the word permitting’ is used rather than the word respecting.’"
According to Frankfort, IL, attorney and physician William Sullivan, DO, JD, many court cases have been dismissed when the patient has suffered a bad outcome after not listening to physicians’ advice.
"The problem is that the decision a patient makes must be informed,’" Sullivan says. "The legal issues that arise when such cases are litigated are whether the patient was competent and whether the patient was given enough information to make an informed decision. The ethical question that arises is, At what point are patients responsible for adverse effects of the decisions they make?’"
Being comfortable that a patient is making an informed decision and being comfortable with the decision itself, most agree, can be two very different things.
Patient choice impacts patient well-being
Hofmann says the decisions patients must make range from the innocuous (what to eat, what to wear for comfort) to the very serious (whether to abandon life-sustaining care or pursue possibly futile treatment).
"The choices or decisions by patients range from mundane to the very vital decisions that have profound impact on their well-being," such as when a pregnant woman elects to proceed with a pregnancy when all tests indicate the likelihood of harm to the mother and unlikelihood of the fetus surviving make that decision irrational, he says.
"The reason disagreements occur among patients, family members, or caregivers is often a failure to understand the underlying rationale for the patient’s choice," Hofmann explains.
"Probably the most common explanation is that the caregiver — a nurse or physician — has not taken the time or made the investment to really understand the basis for what he or she perceives to be an inappropriate, unwise choice."
One obstacle to that understanding is language, and Hofmann says this doesn’t just mean two people speaking different languages.
"The fact is that caregivers use relatively technical and almost unintelligible — from the patient’s perspective — language, so the patient may misunderstand what the caregiver says in regard to treatment options," he says. "This can be a problem with the caregiver not providing a clear explanation of the issues involved in making a decision."
Another impediment to good decision making — meaning, informed decision making — is the impact of illness, trauma, depression, dementia, and/or medications, Hofmann says. Busy caregivers may fail to recognize or appreciate the consequence these conditions or medications may have on the patient’s ability to make a clear, informed decision.
"When a patient makes what is perceived to be an unwise or inappropriate choice, one possible explanation is that he or she does not have what might legally be defined as full decision-making capacity — either temporarily or on a long-term basis," he says. "The amount of medications he or she is receiving, the level of depression he or she may be experiencing because of trauma and illness, the impact of the trauma or illness itself, and temporary or progressive dementia all can complicate and may interfere with what caregivers believe to be a problem in terms of the decision-making process."
Caregiver’s emotions affect decisions
Anger, guilt, and other emotional factors can influence a patient’s choices, but Hofmann is quick to point out that that doesn’t just mean the patient’s emotional state.
Surrogates acting on behalf of the patient can be influenced by their feelings, as can caregivers.
"I was meeting with a task force that is working to improve end of life in the intensive care unit, and I am really proud of work this group has done; they’ve done marvelous work, but the fact is that this hospital still has physicians who are in denial when it comes to conceding that there’s nothing they can do to extend the life expectancy and improve the quality of life in some of their patients who are terminally ill," Hofmann says.
"And that is reflected in their unwillingness to even talk with a patient or his or her family about a DNR [do not resuscitate] order, because they view death as defeat, as failure. They believe, especially the subspecialists, that if I can keep the patient’s lungs going, or if I can keep the patient’s kidneys going, or his heart pumping. . .’ They say, I can reverse this problem.’ But if a patient has cancer that has metastasized and multiple organ failure you might be successful in your limited scope [heart, lungs, kidneys], but the patient’s well-being is being compromised because of one or more physicians who are unwilling to let go."
Finally, the health care provider and the patient might simply have legitimate, deep differences in values. Those need to be acknowledged, Hofmann says, and it’s up to the caregiver to say "our differences are too great, so we need to arrange for you to be in the care of someone else."
Ethics committee helps minimize dilemmas
Ethics committees are valuable resources for minimizing and even preventing patients from making uninformed choices, and in addressing situations in which patients and their caregivers are at odds over those choices.
"The staff should be trained to be both culturally competent, not just culturally sensitive," suggests Hofmann. "They need to recognize the tendency of caregivers to push for decisions in a shorter time frame than many patients or surrogates are comfortable accepting, and need to allow more time to pass to avoid the possibility of forcing premature decisions being made."
Often, he says, in dealing with end-of-life decisions staff members have difficulty understanding why a patient or surrogate is having difficulty making a decision about withholding life-sustaining treatment.
A way to help ensure patients and surrogates have balanced information when it comes to making end-of-life decisions is for health care providers to emphasize — before those decisions have to be made, if possible — that if it becomes necessary to enforce a DNR order, that the patient is not abandoned at that point.
"I think that it is not emphasized enough, when a painful conversation is held about a DNR order, that if the conversation is held in a way that emphasizes that the patient won’t be abandoned, will be made comfortable, the likelihood of what the caregiver believes to be the most appropriate choice is greater," says Hofmann.
Again, understandable communication is key. Hofmann says conventionally, end-of-life conversations between physicians and family members or surrogates begin with the physician telling the family what the diagnosis and prognosis are; instead, he says, physicians should start by asking the family what they understand the diagnosis and prognosis to be.
"Listening to and learning where the patient and surrogates are creates a crucial context for the physician’s presentation and discussion," he explains. "If they listen to where the patient or surrogate is along the continuum of understanding, the greater the likelihood that the physician will be able to convey the information that he or she was intending to convey.
"By not inviting them to describe where they are [in understanding the patient’s condition], the physician makes some very inappropriate assumptions and raises the likelihood that there will be tense conflicts over choices."
Another example: asking, when a surrogate is approached about withdrawing or withholding a ventilator, "What do you want us to do?"
That question puts the decision in the context of what the surrogate wants, rather than what the patient would want, when the choices might not be the same; if the surrogate is the patient’s child, for example, he or she might not want the parent to die, whereas the parent’s wish would be to avoid the ventilator.
"The right question is, What do you believe the patient would want?,’ and it’s a huge distinction, because it allows the surrogate to demonstrate respect for the patient’s wishes," he says. "It feels different to say, My mother would want this’ than to say, I want this.’ It’s a huge difference in acknowledging and respecting the patient’s wishes."
Finally, Hofmann says, ethics trainers should make extensive use of role-playing to help ethics committees and others become more aware of effective ways to mediate and resolve complex ethical dilemmas that arise at the end of life.
"When a patient’s decision is at variance with what the physician would do, you have to recognize the triumph of autonomy," Hofmann points out. Lingering doubt about a patient’s choice is one reason that such conflicts demand an ethics consult.
"That’s why these multidisciplinary resources have been established, because irreconcilable differences occur — so how might they be reconciled and mediated in a way to bring resolution in such a manner that the legitimate needs of the participants are met," he explains. "I think if we are oblivious to the crucial needs of the caregivers [when conflicts arise] in a naïve attempt to be completely responsive to patients and families, we do great disservice to the caregivers on whom patients and family members depend for their well-being. We have a moral imperative to be sensitive to the needs of the caregivers, and I see the ethics consult as part of that."