Is a family member demanding aggressive end-of-life care the clinical team believes is harmful? Ethicists can be of great help in this volatile situation.
“High-quality, compassionate communication with families is critical to avoid further escalation of conflict and to preserve trust in the therapeutic relationship,” asserts Kerri O. Kennedy, DBe, RN, HEC-C, director of the Office of Ethics at Boston Children’s Hospital.
Most decisions on life-sustaining treatment happen through shared decision-making. Ideally, the decisions reflect clinicians’ expertise and the patient’s goals, values, and preferences. It does not always work out that way. “In recent years, there has been an increasing interest in considering how to navigate conflicts over potentially inappropriate treatments,” notes Jonathan M. Marron, MD, MPH, HEC-C, director of clinical ethics at the Harvard Medical School Center for Bioethics.
When disagreements become intractable, a fair approach to conflict resolution is needed. A 2015 policy statement by the American Thoracic Society and other groups offered valuable guidance on how to respond to requests for potentially inappropriate treatment in ICUs.1 “But defining potentially inappropriate treatment remains challenging, even in light of the statement’s proposed definition,” Kennedy says.
The statement authors defined potentially inappropriate treatments as those with at least some chance of accomplishing the effect sought by the patient; however, in the view of clinicians, there is ethical justification for not providing the treatment. Kennedy and colleagues sought to clarify this definition.2 “Since the statement did not delineate which competing ethical considerations warrant consideration, we wanted to explore the considerations that we have encountered in our practice,” Kennedy explains.
Navigating requests for potentially inappropriate treatment is difficult and stressful. “Having a strong foundation in how to consider different competing ethical considerations can make these difficult situations a little easier,” says Marron, a clinical ethicist at Boston Children’s Hospital who worked with Kennedy on the paper.
In these cases, ethicists often hear questions about whether the benefits outweigh the burdens of the proposed intervention and concerns about moral distress experienced by clinicians. Clinicians may believe the patient’s dignity will be violated if they administer invasive interventions near the end of life they believe are unlikely to benefit the patient. “This is an important ethical concern, certainly from a patient perspective, but also because repeated experiences of moral distress can leave a harmful ‘moral residue’ when accumulated,” says Kennedy, who adds that over time, this can compromise clinician well-being and performance.3
Ethicists also consider questions regarding allocation of scarce resources. In cases of potentially inappropriate treatment, some people may raise concerns about the appropriate use of healthcare resources. This is especially likely if the treatment is costly, and the anticipated medical benefit is uncertain or minimal. “The tension between clinicians’ fiduciary obligations to individual patients and their obligations to steward resources is a complex issue that warrants ongoing discussion,” Kennedy says.
Ethicists can answer questions on whether the requested intervention falls within conventionally accepted practice standards. According to the 2015 policy statement, clinicians must first consider whether there is a “high degree of certainty that the requested treatment is outside accepted practice” before declining to offer it in time-pressured situations.
“This is, of course, easier to determine when practice standards have been clearly articulated, such as by a respected professional society or organization,” Kennedy says.
Any hospital that provides life-sustaining treatment should put policies in place to back up clinicians, says Mary Faith Marshall, PhD, HEC-C, director of the Center for Health Humanities and Ethics at the University of Virginia (UVA). UVA Health’s policy states patients have the right to consent or refuse offered treatment or medical interventions. “That doesn’t translate into the right to demand things that aren’t medically or ethically appropriate,” says Marshall, director of the program in biomedical ethics at the UVA School of Medicine.
The policy also states the medical center respects the right of healthcare team members to maintain their professional and ethical integrity and that the team is not required to, and should not, offer or provide treatments that are outside acceptable standard of practice.
Recently, UVA Health hired an advance care planning director. Patients are encouraged to complete advance care directives in the outpatient setting. If they are hospitalized in an acute care setting, the patient is encouraged to revisit the plan. If patients end up in the ICU, they can revisit the directive. “Their current experience is going to inform what their goals are,” Marshall explains. “They’ll have new information, and that’s really important.”
Ethicists also encourage clinicians to set concrete benchmarks. “This helps patients and their families and the staff,” Marshall says.
For instance, clinicians might say that after three days of mechanical ventilation, there will be a discussion about the chances the patient will ever wean off the ventilator. If the kidneys are not improving after a certain amount of dialysis, it will be time to head down a different path because renal failure or other organ system failure is not going to turn around. “This puts the family on notice that when we get to a certain point, decisions will need to be made,” Marshall says. “If it’s not good news, it limits our options.”
A separate policy outlines how clinicians should respond to requests for medically inappropriate treatment. That policy largely reflects the due process steps outlined in the 2015 paper, which allows for unilateral withdrawal if the treatment is ultimately determined to be medically and ethically inappropriate. “But it’s a policy that you never want to invoke, and is rarely used,” Marshall notes.
Instead, clinicians work with families to establish realistic goals of care. Clinicians also ensure the healthcare team is providing accurate information and not painting a rosier picture than actually exists.
Some families demand continued treatment over the clinicians’ objections. Problems arise when family members just are not able to accept the fact their loved one is dying. “Sometimes, you have to help them accept realities that are hard. We focus on the patient’s current lived experience, and what they would want now if they could tell us, or what is in their best interest,” Marshall reports.
Clinicians also assist families in trying to arrange a transfer or obtain a second medical opinion. Most of the time, no facility will agree to accept the patient. “That can help the family understand that everything that can be tried already has been tried, and that all we have to offer moving forward is to keep the patient comfortable and to prevent suffering,” Marshall says.
Clinicians also can ask: What kind of death does this person want to have? “Most people want to die at home, not in an ICU,” Marshall notes. An honest, forthright conversation on the clinical realities of the situation convinces some people to choose to go home on hospice care instead of to the ICU.
UVA Health uses a team-based model of care for complex patients in the ICU. This approach is used for patients who are physiologically complicated, with multiple consulting services involved due to multiple organ systems failing, and for patients who are psychosocially complicated. For those cases, a senior member of the nursing team calls the whole team together, including all the consultants. Everybody agrees on a plan of care that is based on realistic goals. “The only people who can change that plan are the collective team,” Marshall says.
One or two people are designated to communicate with the family. The family hears the same information from everyone. “That way, you don’t have the consultant saying one thing, and the bedside team saying another,” Marshall says. “It makes for good communication and a much better plan of care.”
REFERENCES
1. Bosslet GT, Pope TM, Rubenfeld GD, et al. An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. Am J Respir Crit Care Med 2015;191:1318-1330.
2. Kennedy KO, Puccetti DF, Marron JM, Brown SD. Potentially inappropriate treatment: Competing ethical considerations. AACN Adv Crit Care 2023;34:161-167.
3. Epstein EG, Hamric AB. Moral distress, moral residue, and the crescendo effect. J Clin Ethics 2009;20:330-342.
Quality, compassionate communication with families is critical to prevent further escalation of conflict and to preserve trust in the therapeutic relationship.
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