Palliative care is not only meant to provide pain control and complex symptom management for patients with cancer; it also facilitates discussions regarding future directions of care for patients, giving them more control over their quality of life. According to Jeannie Meyer, MSN, RN, palliative care can assist navigators and other healthcare providers in establishing early goals of care and advance healthcare directives for survivors.
“We realize in palliative care that we are not practicing curative healthcare,” she said at the AONN+ 2019 Midyear Conference. “What we are doing is offering additional support in curative healthcare, and in patients who can’t be cured.”
According to Ms Meyer, Clinical Nurse Specialist for Palliative Care at Santa Monica UCLA Medical Center, typically, first-line treatment for pain would treat the primary cause of pain. But for most of the patients she sees, that is no longer a possibility. So she and her team focus on reducing the severity of their patients’ symptoms. A complete palliative care team may include, at a minimum, a physician, nurse, chaplain, and social worker.
Despite common misconceptions, palliative care patients do not have to be dying. Ms Meyer and her colleagues follow their patients in both the inpatient and outpatient settings, much like navigators follow their patients throughout the cancer trajectory. When patients are followed by palliative care, readmissions are less likely, but if a patient is admitted, the continuity between the outpatient and inpatient palliative teams helps to maintain a stable therapeutic regimen.
How Early Palliative Consultation Helps
Palliative care is more and more commonly introduced at the point of cancer diagnosis, and the earlier the consult in the disease process, the more a palliative care program is able to help. This also serves to “normalize” palliative care and to set it apart from hospice.
“For the longest time, palliative care meant, there’s nothing more we can do…I hate that,” she said.
Incorporating palliative care early on as part of the consultative team allows patients to receive early and aggressive management of any treatment-related side effects (not limited to pain). When patients’ side effects are well managed, they can better tolerate treatment, and some research suggests they can even live longer.
As much as possible, symptom management should be personalized, as certain medications and therapies can interfere with a patient’s work, family life, or lifestyle. For example, some patients are willing to tolerate some pain in exchange for being able to stay alert.
Early Goals-of-Care Discussions
Goals-of-care discussions should focus on finding out who the patients are: what brings them joy, what are they hoping for, what are they most afraid of, and, if they become unable to speak for themselves, who do they trust to make their healthcare decisions?
“It’s not enough to say, this is my parent, my child, my husband, my rock, or my partner,” she said. “It’s, does this person know what’s important to you, and will this person do what you want?”
Perhaps most importantly, these discussions should determine a patient’s acceptable quality of life. These early, realistic goals-of-care discussions, even when patients and clinicians have the utmost optimism, can lead to clear advance directives and better discussions between patients and their decision makers. They can also facilitate a smooth transition to hospice, if and when that becomes necessary.
“Everyone has that line in the sand of what constitutes a life they’d want to live, and it’s different for everybody,” she said. “Know that line, and get it documented early on.”
Survival vs Quality of Life
According to Ms Meyer, before any tube, line, or life-prolonging treatment is introduced in chronically or terminally ill patients, the question should be: “Will this improve the patient’s quality of life, not just the length of their existence?”
These treatments will require a patient to be confined to a hospital setting. “Might that time be better spent at home with their loved ones?” she asked.
But some patients are too sick to go home. Keep in mind, if patients have challenges with funding, are undocumented, or have known family support issues, they may end up “stuck” in a palliative care unit indefinitely. Additionally, therapies are harder for patients and loved ones to discontinue once they are started.
“In palliative care, we look at who these people are: the whole person; the individual,” she said. “We respect their autonomy, and we use that to guide our treatment and to assist our collaborative colleagues in guiding theirs.”