EXECUTIVE SUMMARY
Ethicists can support providers in several ways if a family requests potentially inappropriate care in intensive care units. Bioethicists suggest the following:
- Make providers aware of recommendations for responses to potentially inappropriate treatments.
- Help to create policies describing how the approach should be applied in their own institutions.
- Educate providers that they are not obliged to provide non-efficacious care.
Lawrence J. Schneiderman, MD, founding co-chair of the University of California, San Diego Medical Center’s Ethics Committee, notes one of the more extreme views that emerged during the “patient’s rights” movement is that patients have a right to receive any treatments they wish, and that physicians should not impose their “paternalistic” power.
“Some of this notion persists today,” says Schneiderman. In his view, physicians should always show compassion and not abandon patients or their surrogates with whom they disagree. Instead, physicians should provide an alternative plan of treatment — that of palliative care, or at the end of life, comfort care.
“This is their obligation, no more, no less,” says Schneiderman. “If the institution has a defined futility policy, they can invoke that.”
If after suitable efforts at conflict resolution, the disagreement persists, physicians can suggest transfer to another facility willing to take the patient.
“In my experience, the futility policies of most hospitals are centered on patient benefit,” says Schneiderman. “However, there is a respectable minority of hospitals that claim to be willing to accede to whatever patients or their surrogates demand.” Both of these policies can be regarded as providing a standard of care, says Schneiderman.
“The latter hospitals can show that theirs is a moral position and not an empty promotion, if they accept the patient and help to avoid a long and painful court conflict,” he says.
CHALLENGES DEFINING FUTILITY
A May 2015 policy on responses to potentially inappropriate treatments in ICUs recommends using the term “potentially inappropriate” instead of “futile” when referring to questionable interventions that do not meet the definition of futility.1
“While this may allow for more semantically coherent dialogue on this topic, it does not give additional guidance about which treatments should not be offered by providers,” says Janet Malek, PhD, an associate professor of medicine and medical ethics at Baylor College of Medicine’s Center for Medical Ethics and Health Policy in Houston. Instead, she says it raises a new set of questions: What interventions are inappropriate? Under what circumstances are they inappropriate? Why are they considered to be inappropriate? Who determines whether they are inappropriate?
“The approach advocated by the policy only answers the last of these questions,” says Malek. The policy statement proposes a process-oriented, step-wise approach involving a second opinion, hospital review, and facilitation of transfer to another institution before permitting life-sustaining treatment to be withheld.
“The process therefore draws on a progressively wider set of opinions about whether an intervention is inappropriate, without defining the concept itself,” says Malek. Where state laws permit, she adds, hospitals may be able to facilitate implementation of existing guidelines by creating policies describing how the approach should be applied in their own institutions.
“While the concept of futility was once used routinely in a variety of contexts, the term ‘futile intervention’ is now typically reserved to describe medical treatments that would not offer any physiologic benefit to the patient,” notes Malek. In other words, if the intervention being considered cannot accomplish the desired goal, it is deemed medically futile. “The joint policy statement recommends that truly futile interventions should not be offered to patients or surrogates,” says Malek.
WHAT IS INAPPROPRIATE
Malek says determining whether and why a particular treatment is inappropriate under particular circumstances is a “value-laden process. A variety of different ethical considerations could be used to support a claim that treatment falls into this category.”
Interventions may be inappropriate if they will bring about or prolong significant suffering, are highly unlikely to be successful, or will only delay death. “The extent to which the cost of care should factor into judgments about inappropriateness is currently a matter of controversy,” adds Malek.
Jamie L. Shirley, RN, PhD, faculty at the School of Nursing and Health Studies at University of Washington Bothell and a clinical ethics consultant at University of Washington Health System in Seattle, says a key issue is the differentiation between efficacy and appropriateness to meet goals of care.
“Providers are not obliged to provide non-efficacious care,” she says. “If the treatment will not work to address the problem the patient has, then the provider need not offer it, nor accede to a request for this intervention.”
Examples might include use of antibiotics against an infection that medication will not treat, or CPR for a patient with severe multisystem organ failure.
“In this situation, the heart might be briefly restarted, but will inevitably fail again for the same reasons it failed in the first place: that it is not supported by the other failing systems,” says Shirley.
Shirley says these situations are qualitatively different from those in which the treatment will work to prolong a patient’s life, but will also create increased or prolonged suffering in a situation in which the patient and family have identified “preventing suffering” as one of their goals of care.
“In these situations, it can be helpful for providers to re-orient families to their goals,” she says. “Of course the family wants the patient to live longer, but at what cost in burdens and suffering?”
PROVIDER DISTRESS
Would no reasonable set of values support offering life-sustaining treatment? If so, says Malek, providers may feel their professional integrity is compromised by providing such care.
“In cases where intractable disagreement persists and a healthcare provider feels morally compromised by continuing treatment, a process-oriented approach or a transfer of care to a willing provider may be recommended,” Malek says.
Shirley recommends the following for providers:
• Separate their own suffering from that of the patient and families. “There are many choices that feel emotionally burdensome to providers that are genuinely desired by families,” she says.
• Remember that family expectations are created in large part by awe over the technological prowess of healthcare providers and institutions.
“When we then say we are going to withdraw that expertise, they are somewhat justified in feeling cheated and/or abandoned,” says Shirley.
• Humbly acknowledge the limits of healthcare providers’ abilities.
“This puts providers on the same side as the family, rather than positioning them as adversaries,” she says.
• Ensure justice concerns are addressed.
Providers can ask themselves, “Are we treating like cases alike? Is there something about the people in this case that makes us more inclined to stop treatment when we might continue it for others? Or is our decision being made on the basis of important medical difference in the health status of the patient?”
Families involved in these cases are often from socially and economically disadvantaged ethnic and racial groups, notes Shirley. “Their perception may be that we are denying care because they are from those groups — that it is discrimination,” she says. “And this is a question with which we should be concerned.”
The American College of Physician’s 2010 report, Racial and Ethnic Disparities in Health Care, reports multiple studies showing that patients from minority groups were less likely to receive curative treatments. “Asking these questions allows the concerns to be made explicit, rather than lingering as unspoken anxiety,” says Shirley.
SOURCES
- Janet Malek, PhD, Associate Professor, Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX. Phone: (713) 798-5169. Email: [email protected].
- Lawrence J. Schneiderman, MD, Professor Emeritus, Departments of Family Medicine and Public Health and Medicine, University of California, San Diego. Phone: (858) 534-4206. Email: [email protected].
- Jamie L. Shirley, RN, PhD, Faculty, School of Nursing and Health Studies, University of Washington Bothell/Clinical Ethics Consultant, University of Washington Health System, Seattle. Email: [email protected].
