By Stacey Kusterbeck
Connie M. Ulrich, PhD, MSN, RN, FAAN, and colleagues often observed close collaboration between ethicists and palliative care providers, but wanted to better understand the intersection between palliative care and ethics consultation. The researchers surveyed 86 pediatric palliative care clinicians at 70 children’s hospitals about why they requested ethics consults.
“In our study, palliative care clinicians consulted ethicists for a variety of reasons,” says Ulrich, professor of nursing and professor of medical ethics and health policy at Penn Nursing.
Ethics consults requested by palliative care involved conflicts on decision-making, moral distress, equity and discrimination concerns, capacity determinations, brain death criteria, and withdrawal of artificial nutrition and hydration. Almost all (97%) palliative care providers said that the hospital had an ethics consult service, so the pediatric palliative care unit was not expected to meet the institution’s ethics needs. In about half (49%) of settings, a clinician involved on the pediatric palliative care team performed ethics consults. Of those palliative care providers, most lacked formal ethics training: 15% had ethics degrees, 6% had ethics certifications, and 2% had ethics fellowships.
The study authors recommend these practices to increase collaboration between palliative care and ethics:
• Palliative care clinicians can round with clinical ethicists on patient units and, together, meet patients and their families.
• Palliative care clinicians can become members of the in-house ethics committee and share their expertise with other committee members.
• Palliative care clinicians can obtain additional expertise in ethics through fellowships in ethics.
“Ethicists could also garner expertise in palliative care through a rotation or fellowship with palliative care clinicians,” offers Ulrich.
At Baylor Scott and White Medical Center-Hillcrest, about two-thirds of ethics consults are either requested by the palliative care team or because the palliative care team told the primary care team to reach out to ethics.
“In my experience, palliative care and clinical ethics share much in common. Both are interested in values-related questions,” says Devan Stahl, PhD, HEC-C, associate professor of bioethics and religion at Baylor University and palliative care fellowship faculty at Baylor Scott and White Medical Center-Hillcrest.
Both ethicists and palliative care providers want to ensure that patients and surrogates are seeing the big picture when making important medical decisions.
“Ethics and palliative care both ask the hard questions that many other specialists neglect,” says Stahl. For instance, ethicists or palliative care providers ask patients questions such as, “What do you hope to achieve during this hospitalization?” “What are your biggest concerns?” and “When will we know when it’s time to stop curative treatment?” To tailor medical treatment plans to the patient’s goals and values, clinicians need to know this information. “As a clinical ethics consultant, I also need to know the answers to these questions when conflicts arise between the patient and the care team, or between medical teams caring for the patients,” says Stahl.
In Stahl’s experience, palliative care teams readily identify cases where patients do not fully understand the severity of their medical condition or are making treatment requests based on misinformation or a lack of information. For example, a patient might think another round of chemotherapy finally could cure their cancer, whereas oncologists believe the patient is terminal and treatment only would prolong the patient’s life a few more weeks.
“For one reason or another, there has been a communication breakdown between practitioners and the patients,” says Stahl. In such cases, ethicists can be valuable mediators in family meetings to make sure that the clinical team and the patient hear the same information regarding prognosis and treatment options.
Sometimes ethicists are the ones who pick up on the fact that the patient misunderstands the diagnosis, prognosis, or the current treatment plan.
“Ethicists can call palliative care to review the patient’s chart and provide the big picture, which is sometimes missed by specialists,” says Stahl.
There are overlapping skill sets in bioethics and palliative care, observes Aaron Wightman, MD, MA, an associate professor of pediatrics in bioethics and palliative care at University of Washington School of Medicine. “There’s opportunity for improving how we support patients and families, by highlighting the synergy between the two specialties. Fundamentally, both disciplines are directly focused on promoting patient and family flourishing. That’s true in medicine broadly — that’s what we should be doing. But in both bioethics and palliative care, it’s a major focus,” says Wightman.
Both bioethics and palliative care use multidisciplinary models, with practitioners including physicians, nurses, and social workers. Both specialties promote collaboration between the family and members of the medical team. Both seek to better understand the family’s perspectives and priorities.
“A number of leading scholars in palliative care are also bioethicists, and the same is true the other way around,” notes Wightman.
Most clinicians practicing in palliative care have some basic ethics knowledge. Likewise, most ethicists have some familiarity, at least in terms of the skill sets, with the work of palliative care.
Palliative care specialists often are called for patients with complex diseases, when the patient is at or near the end of life and is shifting goals away from curative or life-extending measures toward life-improving measures. “Those are the exact same patients and topics that ethics consultants get called about,” says Wightman.
The ethicist’s role is to clarify issues and resolve disagreements (whether between the patient or family and the medical team, or among medical team members) about how to make decisions about what kinds of treatments should be offered. If the decision is made to shift goals of care away from curative or life-extending measures toward life-improving measures, it could result in a palliative care consultation. In other cases, it is the other way around, and ethics gets involved as a result of a palliative care consultation.
“When there is distress or disagreement encountered in clinical palliative care, it’s a reason to call the ethics consultation. If it’s about conflicting goals of care, uncertainty, and decision-making, one of the outcomes of that could be palliative care consultation,” says Wightman.
Ideally, palliative care clinicians and ethicists work together for the benefit of patients and families. “However, to work effectively together requires both parties to be on the same page regarding roles and expectations in the case,” says Jordan Potter, PhD, HEC-C, director of ethics at Community Health Network in Indianapolis.
For example, when going into a family meeting, Potter debriefs with the palliative care clinician beforehand. Together, the providers establish a plan about what and how to communicate with the patient and family.
The palliative care clinician focuses on the medical background and recommendations and connecting these items to the patient’s values or best interests. The ethicist’s primary focus is on establishing and supporting the ethical aspects of the decisions at hand. That may be the ethical obligation to honor a patient’s previously expressed preference against heroic measures at the end of life, the duty of the medical team to only provide beneficial and non-harmful medical interventions to patients, or some other ethical dilemma that has arisen in the course of the patient’s healthcare.
In Potter’s experience, palliative care clinicians want help addressing these two ethical issues:
• concerns about the provision of medically futile or non-beneficial care;
• patients’ end-of-life treatment preferences not being honored by family members.
“These are key areas where ethicists can help palliative care clinicians and the medical team set appropriate treatment limitations with patients and families, while also ensuring that patient wishes are being appropriately respected and honored, even after losing decision-making capacity,” says Potter.
As for the palliative care team, ethicists need their expertise when it comes to goals of care and/or symptom management. “Palliative care clinicians are experts in communicating about these matters, so I try to leverage that expertise whenever possible — including occasionally delaying an ethics consult if a palliative care consult has not yet been completed,” says Potter.
- Foxwell AM, Ulrich CM, Walter JK, Weaver MS. Everyday ethics or deference to expertise: Experiences of pediatric palliative care teams with ethics consultancy. J Palliat Med 2024; Jul 8. doi: 10.1089/jpm.2023.0568. [Online ahead of print].
