Nurses Have the Responsibility to be the ‘Voice of the Patient’ in Palliative Care Advocacy

The use of integrative palliative care can improve coping skills, thus bettering quality of life in patients with acute myeloid leukemia (AML) receiving intensive induction chemotherapy. That said, it is essential that oncology nurses advocate for palliative care for patients who could benefit from it.

“Often what we have found in our practice – and certainly in our studies – is that nurses and nurse clinicians are begging for palliative care specialists to be invited to see these patients, and it’s often the attending physicians who are saying, ‘we don’t really need that’ or ‘the patient isn’t ready for that yet,” said Thomas W. LeBlanc, MD, associate professor of medicine at the Duke University School of Medicine, noting that some people still believe the misconception that palliative care is synonymous with end-of-life care (hospice).

LeBlanc recently presented his research on palliative care in patients with AML at the 2021 ASCO Annual Meeting.

The study analyzed quality of life, depression, and anxiety symptoms for patients with AML who are in their second week of treatment with induction therapy. Researchers chose the second week of treatment because that is when patients tend to feel the worst. Two groups were compared: the integrated palliative and oncology care (IPC) cohort that saw palliative care clinicians at least twice a week while hospitalized (n=86) versus usual care (n=74).

Findings showed that the patients randomized to IPC had more approach-oriented coping skills and less avoidant-oriented coping skills. The interventions effects on those given IPC who had approach-oriented coping were sustained all the way up until week 24.

An improvement in coping skills was correlated with improved quality of life and decreased depression and anxiety symptoms.

Nurses treating this patient population can understand how life-changing improved quality of life can be for patients with AML.

“Nurses are often the ones who are seeing and witnessing the suffering of these patients and their families because they’re in the room 11 out of the 12 hours of their shift,” LeBlanc said. “The nurses have an incredible opportunity and really also (a) responsibility to be the voice of the patient, who maybe doesn’t know how to articulate that they’re really suffering with something that we’re not doing a good job managing.”

Not only do nurses have to advocate for palliative care to the clinicians and other members of the treatment team, but they must also ensure that patients and their families understand the benefit of receiving palliative services as well.

“The mistake that often is made is that we kind of go in with our tail between our legs, because we’re afraid that patients are going to get freaked out when they hear the P-word. Even though most [patients] have heard it, they don’t know what it means,” LeBlanc said.

LeBlanc recommends clinicians approach the conversation with a script similar to this:

“We’re going to call another group of specialists to come and see you. They’re called palliative care specialists, and they’re experts in helping patients and families deal with the stresses and symptoms that go along with having a serious illness like AML. I have found that they often can really help people feel better with symptom management and help improve or maintain quality of life or help you cope with anxieties that can come along with having this diagnosis and getting treatment.”

Laying down the basics for what palliative care actually is – and what it is not – can greatly sway patients’ opinions.

“We know from other studies that when patients and families hear an explanation of what palliative care is, and how it might be helpful to them, they just about universally want it,” LeBlanc said.

Reference

LeBlanc TW, Kavanaugh A, Webb J, et al. Palliative care and coping in patients with acute myeloid leukemia receiving intensive induction therapy: A Mediation analysis of data from a randomized trail. Presented at: 2021 ASCO Annual Meeting. June 4-8, 2021. Virtual