Case 1

After surgery for pancreatic cancer, GA, a 73-year-old semiretired engineer, decided that it was time to “throw in his cards,” and he refused further treatment. “There is a time to hold them, and a time to fold them!” he frequently exclaimed.

GA’s wife and brother thought that he was depressed. His primary care physician of 30 years, his oncologist, and his surgeon all believed that, given the specifics of his case, GA had a very good chance for a few years of good quality life if he accepted radiation and chemotherapy treatment after his surgery. The psychiatrist thought that with the patient’s recent and radical change in perspective, psychotherapy and encouragement were appropriate interventions.

The palliative care team, called in by the ward attending physician, concluded, however, that it was in GA’s “best interest” to accept hospice care and refuse further “inappropriate” treatment. They vigorously urged their conclusion on the patient’s family.

Discussion

In this case, the palliative care team accepted GA’s statements as expressions of autonomy rather than challenging his use of platitudes, examining his affect, and probing the reasons for his choices to determine whether he was actually in the grips of a depressive mood disorder. ^{Footnote 1} Assessment of decisional capacity is an important medical responsibility that becomes especially important when patients refuse life-preserving treatment. If GA was found to be clinically depressed, his statements should not have been accepted as reflecting an autonomous choice. It was possible that his psychiatric state (e.g., depression, ambivalence, uncertainty) had disabled his capacity to render this important decision and that his mental condition merited treatment.

Perhaps the palliative care team overlooked the issue of decisional capacity because they regarded what GA had expressed as being in his best interest. It is all too common for clinicians to only explore decisional capacity when a patient disagrees with a recommendation. When patients seem to see things their way and seem willing to go along with what physicians regard as being in the patient’s best interest, they often do not interrogate the patient’s decisional capacity even when there appear to be good reasons for performing a full assessment.

Aside from the issue of depression, the palliative care team did what many clinicians would do. They relied on the “best interest standard” in forming their judgment about what should be done. The “best interest standard” is widely invoked in law and medicine and is championed by highly esteemed bioethicists. ^{Footnote 2,Footnote 3} It seems as wholesome as mother’s milk, as agreeable as apple pie, and as salutary as chicken soup. Therefore, we need to explain why we see the use of this phrase as a problem. What could possibly be wrong with invoking the “best interest standard”?

To begin with, the phrase “the best” expresses the presumption that there is only one right answer. That means that any other conclusion is wrong. Thus, “the best interest standard” expresses intolerance or devaluation of other points of view. When people use the phrase they polarize discussion because they are taking the stand that any other option opposes what is in the patient’s best interest. When clinicians allow themselves to believe that they are acting in their patient’s “best interest,” they are inclined to feel justified in pressing their views on the patient and others and in trying to assure that their view wins out. In many instances, that imposition of their will exceeds their legitimate clinical and moral authority because it requires a personal ranking of priorities and personal judgment.

When we acknowledge that we live in a pluralistic society, we should, however, recognize that people can and do regard different things as good. Even when people consider the very same things to be good, they may prioritize them differently, and their rankings may be different at different times and in different circumstances. In other words, saying that some option is “best” is expressing a subjective opinion. It has no more moral standing than saying that one prefers blueberry to apple pie or gazpacho to chicken soup.

For example, it is easy to imagine two patients with a similar fatal diagnosis of lung cancer. Their original chemotherapy no longer works. Their oncologist explains another possible treatment, detailing the possible benefit of prolonging life for a few months as well as the burdens associated with the therapy. One rejects the intervention; the other accepts the further treatment. Both of these patients are likely to have decisional capacity, yet they reach opposite conclusions in medically similar situations. The first explains that he has had enough treatment and that he wants his remaining savings to go to his daughter to help her start a new business. The second explains that his daughter will be getting married in a couple of months and he wants to be there for the ceremony and to avoid dying before the wedding so as not to cast a pall over the event.

This example illustrates how people’s personal values and commitments can and do impact their ranking of core values and their medical decisions. Medical professionals need to be aware of how radical these differences can be and be alert to the hazard of presuming that they know more about what is in the “best interest” of a patient than the patient or the family. Whereas medical professionals certainly have a privileged perspective for advising on what is medically best when the scientific evidence supports such a judgment, that perspective does not encompass all of the additional factors that go into making personal decisions that involve prioritizing different values and determining what is best overall for the patient.

Medical professionals have the expertise to identify treatments that are most likely to achieve the patient’s goals. Medical professionals also have the authority to probe, explore, and even challenge a patient’s ranking of goals to help the patient reflect upon them and possibly reconsider. Medical professionals, however, have no privileged position for knowing what is “best” for their patient. Those decisions are personal and individual, and the answers are not provided by medical training. It is hubris to presume otherwise. Certainly, the choices that a group of physicians may make for themselves may be different from the choices that their patients actually make. Any clinician who has been in practice for a while knows this.

Whereas physicians are required to offer their expert opinions on medical matters, such as why a particular treatment would be most effective or involve the fewest complications, venturing into the personal domain of telling patients what is most important to them, or setting goals of care for patients, is beyond the scope of their expertise and their legitimate authority. The term “medically inappropriate” has been employed in clinical case discussions about Helga Wanglie, Baby K, and David Christopher Dunn. ^{Footnote 4,Footnote 5,Footnote 6,Footnote 7,Footnote 8,Footnote 9} Nevertheless, it strikes us that drawing the conclusion that treatment may be withdrawn or withheld by labelling an intervention “medically inappropriate” begs the question. In effect, as the term is used by some palliative care practitioners, it means no more than that they believe it is not in the patient’s best interest; it is inappropriate because they deem the goal to be inappropriate. Technically, a medical intervention is inappropriate only when it is unsuitable for meeting the medical goal it is intended to achieve (e.g., sustain life) or when it will do more medical harm than good.

The failure of palliative care specialists to recognize the limitations on their sphere of authority is especially surprising, because they are the ones who have taught their clinician colleagues about the importance of having “goals of care” conversations with patients and families. That significant insight reflects an awareness of the fact that whereas everyone may value prolonging life, avoiding pain, and maintaining function, people can prioritize those universally cherished values differently and rank them differently in different situations. They may also change their rankings as their situation changes and as time progresses. There is no fixed priority of even universal values.

When palliative care teams initiate “goals of care” conversations, they are, in effect, asking the patient and/or family to inform the team about their own priorities in their current situation. In contrast, dictating what is in a patient’s “best interest,” sets the stage for an adversarial relationship with anyone in the family who might disagree. Those who prefer adversarial clinical relationships focus their interactions with families on “dispute mediation” that leaves everyone involved dissatisfied with the outcome. In contrast, palliative care clinicians have been exemplary in their sensitivity to patient and family needs and the importance of bringing families together and supporting them with spiritual care, massage, and sympathetic ears. Because palliative care teams appreciate the need for supportive advocates when patients and families have to navigate complex and difficult medical situations, they should be especially sensitive to the words that they choose, and studiously eschew creating controversy by employing adversarial language.

Another issue raised by this case involves the palliative care team’s presumption that their perspective was correct and that it should override the view of the patient’s primary care physician of the past 30 years. The assertion of a prerogative to take control of the case betrays an attitude of undue confidence in their superior knowledge and skills. It also suggests a disregard for the value of the long-standing doctor–patient relationship and how preserving the relationship is likely to benefit the patient.

Certainly palliative care physicians and nurses have expertise in pain management and they are compassionate and expert in communication, but pain management, compassion, and communication are competencies that every clinician should have. When members of the palliative care team identify a lack in a nonpalliative care colleague, they have an important role in trying to influence that person’s thinking and helping their colleague learn the skills that they need.

Case 2

SE was a 54-year-old woman who had a history of chronic obstructive pulmonary disease (COPD) and hepatitis C virus (HCV). She was a smoker with respiratory failure that had recently became acutely worse. She arrived at the hospital in mid-January in respiratory distress. She was admitted to the Medical Intensive Care Unit (ICU). A lung mass and a probable collapsed lung were identified as the probable causes of SE’s respiratory failure, and she was intubated. A biopsy was needed in order to develop a treatment plan. At that point, the patient lacked decisional capacity.

The patient’s husband was her surrogate. He refused the biopsy, and the case was referred to the Ethics Committee. The treatment team explained that if they could biopsy the mass and identify the tumor, they could then treat it and possibly prolong SE’s life. The patient representative reported that she had spoken with SE during SE’s previous admission for respiratory distress in early January. At that time, SE had articulated that she wanted aggressive treatment if it would help her to live longer. The patient representative had documented the conversation in her notes. Based on that conversation, which represented the patient’s previous wishes, and in opposition to her husband’s refusal of treatment, the Ethics Committee recommended that a biopsy of the mass be obtained.

The tumor was identified as cancer and chemotherapy was initiated. Unfortunately, the tumor did not respond to treatment. By mid-February, SE was still intubated. She was unable to communicate, but she showed no signs of being in pain. Her husband was at her bedside daily. The palliative care team met with him, but he refused their recommendations. Team members described him as being “weird” in his dress, affect, and speech, and in his focus on particular and irrelevant concrete details in his wife’s treatment. Nevertheless, he wanted whatever treatment would extend his wife’s life.

In mid-February, three long-estranged relatives of SE were identified and contacted: a brother, a sister, and a nephew. After speaking with the palliative care team, they wanted SE to receive only palliative care and to have the ventilator disconnected. Following her meeting with the estranged relatives, the palliative care attending physician wrote the following note to the Ethics Committee:

Discussion

Here, the counterproductive phrase, “best interest,” is repeated three times in a single paragraph. No one knew what SE “would want, if she knew that she was dying.” For total strangers such as the ICU doctors or the palliative care team to venture a guess is pure speculation. Relying on the estranged relatives’ perspectives of what the patient would have wanted would amount to indefensible guesswork.

In the note, there is also the phrase, “liberated from the machines.” This is powerfully loaded language that is being used to manipulate the note’s readers, and probably others, to a point of view. In its ordinary language sense, “liberation” is the act of setting someone free from imprisonment, slavery, or oppression. It is synonymous with terms such as “emancipation,” “enfranchisement,” and “freeing,” and closely related to words such as “deliverance,” “redemption,” “salvation,” “autonomy,” and “freedom.” People who think of themselves as having the role of advocate for a loved one are far more likely to prefer being described as “liberator” than as “oppressor.” The language suggests that whoever “liberates” a patient from a ventilator does something good. That person is a savior or redeemer.

Furthermore, if repairing the injustice requires “liberation,” it is hard to escape the conclusion that whoever imposed the ventilator did something very bad. The use of the term “liberate” is likely to produce waves of guilt in any patient surrogate who had agreed to impose the original bondage to “machines” on the captive patient. The use of that sort of heavy-handed linguistic pressure by medical professionals strikes us as an abuse of power.

Employing the term “liberate” in the context of discontinuing ventilator treatment has a history going back to 1987. In a JAMA article entitled, “Liberation of the patient from mechanical ventilation” by Hall and Wood, the authors suggested that a process of slowly weaning patients from mechanical ventilation before discontinuing the intervention was unnecessary. ^{Footnote 10} Instead, they proposed a simple pathophysiologic approach to discontinuing mechanical ventilation. In their discussion, they used the term “liberation.” That term was then embraced first by intensivists and then by palliative care practitioners. ^{Footnote 11,Footnote 12,Footnote 13,Footnote 14,Footnote 15,Footnote 16,Footnote 17,Footnote 18} At this point, the term “liberation” has been so widely accepted that a PubMed search on January 20, 2016 yielded 15,345 results.

Whereas it could be supportive to use the term “liberate” to echo a patient’s language, and it could also be helpful to use the term to affirm the decision of a surrogate who is struggling with the thought that discontinuing a treatment is wrongdoing. Those uses of “liberate” in support of a difficult decision that genuinely reflects the clearly stated values and priorities of patients and families is very different from the use that we find objectionable. Introducing the term “liberation” to present a medical professional’s personal opinion that being sustained on a ventilator is being enslaved and tortured when there is no evidence that the patient is experiencing pain is distorting. Describing it as being in the patient’s “best interest” imposes an ideology.

In common parlance, “ideology” is a doctrine, myth, or belief that guides an individual, a group, or a social movement. Although every rational person considers pain to be bad, to believe that experiencing pain, or facing the possibility of experiencing pain, is worse than sacrificing other core values such as life or function is an ideology. There is no ethical or empirical justification for anointing shortening the dying process or avoiding pain with moral priority. Nevertheless, that is what we have noted in the palliative care movement. The view is not merely maintained as a personal belief. The position that pain is worse than death and worse than loss of function is advocated with confidence, and occasionally, with a proselytizing fervor. The zeal and lack of existential doubt that we observed create a hazard for patients and their families. It also puts palliative care in conflict with its core values of supporting patients and families in implementing their own goals.