When a family demands possibly inappropriate life-sustaining interventions, clinicians often turn to hospital policies for guidance. The authors of a recent study examined the effectiveness of Yale New Haven Hospital’s Conscientious Practice Policy.1

The policy outlines a procedure to limit potentially inappropriate care. Researchers already knew the medical futility policy was used frequently and that ethics committee members discussed it often.2 “We were interested in exploring it in a deeper, more rigorous way. Rather than just how often it was used, we wanted to know why,” says Bryan Kaps, MD, MHS, the study’s lead author.

Researchers held three focus groups of attending physicians and ethics committee members. They asked four questions as a starting point for the discussions: What was your personal experience with the policy? When and in what settings is the policy used? What happens to families and care providers during the use of the policy? How would you change the policy?

A theme emerged, focused on the inconsistent use of the policy. Whether it was used depended mostly on how resistant the family was to limiting interventions. “One thing I found fascinating was just how ineffective it was. If you got to the point of having to use this policy, it didn’t work super great, for a whole host of different reasons,” Kaps observes.

Participants also stated they turned to the policy because they were distressed morally over providing inappropriate treatment. “They decided to activate the policy to try to alleviate that,” Kaps explains.

Most of the time, physicians discussed the situation with the families first. It was only if the families continued to insist on the treatment over the physician’s objections that the policy was consulted. “It was almost always brought up in the context of conflict. In and of itself, that’s problematic,” Kaps notes.

Some attendings made references to other providers, such as surgeons, who were perceived as finding it easier to say no to certain interventions. In contrast, the critical care attendings often turned to the policy to try to resolve the tension they felt over a request to provide inappropriate care. “It didn’t really work,” Kaps says.

Attendings wanted to improve the policy. “They liked the idea of cleaning up the language in it, and making it clear when to use it,” Kaps says.

The main point the attendings made was the policy was applied inconsistently. “Sometimes, individuals would say yes, sometimes they would say no,” Kaps says. “It doesn’t necessarily come with the same result every time.”

Often, the family’s resistance influenced the result. The attending physicians liked the idea of participating in feedback sessions to discuss the justification for decisions made. “They also wanted some clear guidance on when to actually use the policy,” Kaps adds.

The complexity of the process also arose. First, the attending has to decide to use the policy. Another attending has to give a second opinion, and the ethics committee gives its opinion on whether the policy should be used. After all that, the legal department is notified, and the medical care team needs to see if they can transfer the patient to another institution that will provide the requested care.

Next, someone still needs to consult with the chief of staff, who signs off on it (or not). At that point, the patient’s family can prolong the situation by requesting a court hearing. “If the policy ends up being a set of roadblocks rather than an effective way to determine something, then it is really not that helpful,” Kaps says.

Whatever the policy states, it should be communicated clearly to everyone involved. “If the policy is not available and accessible to the team, it’s a problem, and they’re not going to be able to make use of it,” says Benjamin Tolchin, MD, MS, FAAN, assistant professor of neurology at Yale School of Medicine.

It is important the policies clearly outline the criteria for activation and the criteria for not offering a specific life-prolonging intervention. Depending on the institution, clinical teams, ethicists, administrators, or lawyers all might be involved in deciding when to activate the policy. The wording and terminology used in the policy can be problematic.

“In my experience, I’ve seen policies that refer to ‘futility,’ and a lot of ethicists view that as a somewhat problematic term,” Tolchin shares.

The term can be interpreted several ways. One is the intervention cannot possibly achieve the intended aim. However, many clinicians use the term “futile” to refer to an intervention that will not achieve an aim the clinicians view as worthwhile. An example would be an intervention that keeps the patient alive for a short period, even with the understanding they will never be discharged.

Some families view that as a worthwhile aim, with the intervention able to achieve its goal, but some clinicians may describe it as futile. “Futility is a term that’s confusing and ambiguous unless you are very clear on what that means. A better terminology is to talk in terms of harms and benefits,” Tolchin suggests.

For example, life-prolonging interventions may be judged clinically to be much more likely to harm the patient than to benefit the patient. That can be reasonable grounds for hospitals not to provide an intervention.

“But there is a need to clarify it’s not because the intervention is futile, it’s because the cost to the patient far outweighs the benefits,” Tolchin explains.

An example would be an elderly, frail patient with vascular disease and gangrene who is not a surgical candidate for amputation because the risk of mortality is extraordinarily high. The family wants a tracheotomy and PEG tube to keep the patient alive, but the clinicians believe that is inappropriate.

In this case, the interventions are not futile because they will keep the patient alive longer. However, the prolonged physical pain probably outweighs the benefit of spending a couple more weeks of life in the hospital.

To help in these tough cases, Tolchin says policies should answer two questions: Who makes the judgment? How high is the threshold to make the judgment? “I’ve seen policies with an infinitely high threshold — basically, ‘we will never withhold a requested intervention,’” Tolchin reports.

Other policies state interventions can be held back against the family’s wishes, but still require a high threshold to make that judgment. Policies also vary on who makes the final decision; sometimes, it is the chief clinical officer, other times it is the attending physician with an ethics consultation.

“There’s definitely been a shift toward a lower threshold during the pandemic because of concern of hospital systems being overwhelmed,” Tolchin says.

Those changes likely will inform hospital policies going forward. “Policies that were modified during the pandemic may provide models on how to think about policies in the future,” Tolchin adds.

There are times when the mere use of policies inflames the family/clinician relationship. “It can become more confrontational when a policy like this is used,” Tolchin says.

For cases in which a patient is clinically declining and nearing death, the invocation of a policy to limit inappropriate care can be perceived as a signal the team is giving up. “The sadness and anger that families naturally experience around the death of a loved one can become channeled toward the clinical team,” Tolchin says.

This severely undermines the therapeutic clinician-patient-family relationship at a critical juncture. “Such damage is more likely if communication is limited, inconsistent, or delivered in a less-than-empathic manner,” Tolchin notes.

It is better if the transition in care is conveyed not as a “withdrawal of care” but as a change from one form of care (that has proven not beneficial) to another form of care (that can be beneficial — by improving the quality of the patient’s remaining time). “It’s very important to have experts — ethicists, lawyers, administrators — to provide [guidance], but also to provide moral and legal support,” Tolchin suggests.

An explicit policy tells clinicians what the healthcare system will and will not do to support clinicians. If the hospital is not willing to overrule a surrogate requesting an intervention that is judged to be more harmful than beneficial, it is important that be understood clearly.

“If the hospital is willing to intervene, at least in certain situations, that’s also important to be documented,” Tolchin says. 

REFERENCES

  1. Kaps B, Chen HA, Kopf GS, Encandela J. Perspectives on the effectiveness of a medical futility policy. J Clin Ethics 2021;32:48-60.
  2. Kaps B, Kopf G. Functions, operations and policy of a volunteer ethics committee: A quantitative and qualitative analysis of ethics consultations from 2013 to 2018. HEC Forum 2020; Sep 26. doi: 10.1007/s10730-020-09426-4. [Online ahead of print].