If the first palliative care consult happens on the same day clinicians are going to withdraw life support, palliative care can still manage the patient’s symptoms and comfort the family.
“But just showing up at a doorstep and trying to fulfill my role as a caregiver and a witness to suffering, and trying to be therapeutic in that context, is very hard,” says Billy Rosa, PhD, MBE, NP-BC, FAANP, FAAN, a psycho-oncology postdoctoral research fellow at Memorial Sloan Kettering Cancer Center in New York.
When palliative care is involved only at the end of life, says Rosa, “I don’t think we are serving the patient or their family to the best of our abilities. I think we are missing the mark.”
Palliative care “can and should” be integrated into serious illness care at any point following diagnosis, Rosa argues. This can happen in conjunction with curative treatment, or as a standalone intervention focused on comfort at the end of life. “Palliative care goes beyond just end-of-life care. There are many contributions we can make upstream in the disease process,” Rosa says.
Providing palliative care education to nurses in clinical and academic settings is necessary for high-quality care.1 Rosa and colleagues reviewed the National Consensus Project’s Clinical Practice Guidelines for Palliative Care and literature in the palliative care field.
“Critical care nurses spend the highest proportion of time in direct patient care of any health professional in the intensive care unit,” notes Betty Ferrell, PhD, RN, FPCN, FAAN, one of the study’s authors and principal investigator for the End-of-Life Nursing Education Consortium.
Nurses are ideally positioned to integrate palliative care, critical care, and ethical care, Rosa and a different research group argued in another recent paper.2 “Palliative care is not some added extra — it’s really just good care,” says Rosa, the paper’s lead author.
The goal is to promote holistic patient care — physical symptom management, and also addressing psychosocial, spiritual, cultural, and ethical needs. “When we look at the critical care setting, we are still helping people understand the role palliative care can play. We’re not there yet,” Rosa says.
To a lot of healthcare providers, palliative care is viewed as a failure of medicine to save a life. Many ethics consults involve cases with a serious illness diagnosis. Patients and families are struggling with symptom management, complex psychosocial dynamics, and spiritual distress.
“Ethicists can be critical in identifying the need for increased palliative care involvement,” says Ferrell, director of the division of nursing research and education at City of Hope in Duarte, CA.
There are a few reasons palliative care involvement still does not happen as early as it should (or in some cases, at all):
• A lack of understanding on what palliative care really is. “One of the biggest challenges to our work is that people confuse hospice and palliative care,” Rosa reports.
Many families do embrace palliative care once they see its benefits (i.e., the patient finally feels pain relief or receives assistance with psychiatric or psychological needs).
“Healthcare workers are recalibrating their understanding of palliative care in a way that is improving the quality of experience of patients and families,” Rosa says.
However, resistance to palliative care persists. One reason is the term “palliative care” itself. To remove the stigma, some institutions now refer to palliative care service as “supportive care.”
“While I personally use the term ‘palliative care,’ there is some research that suggests that when patients hear ‘palliative care,’ they think they are on death’s doorstep. When they hear ‘supportive care,’ they feel like they have a friend watching out for them,” Rosa says.3
• Clinicians do not always identify the need for palliative care specialists. “The model is broken in a sense,” Rosa laments.
As a consultation team, palliative care specialists still need permission from the primary team to engage the patient or family. There may be some challenges to access the patient. That is true even if hospitals use automatic palliative care referrals for certain cases, such as patients who have been on ventilators for several days. “Even though policywise, the provider can’t object to an automatic referral, palliative care still has to come through the unit and talk to the attending,” Rosa explains.
• There can be tension between the clinical and palliative care teams. “A culture shift is needed, where all teams can understand palliative care as collaborative and as expanding the work they are already doing,” Rosa offers. Problems often stem from clinicians’ mistaken belief that palliative care requires giving up life-saving interventions or switching to comfort care. “Palliative care can truly be delivered in conjunction with curative treatment if that’s appropriate for the circumstance,” Rosa argues.
• The clinical team does not realize palliative care is there for them, too. “A lot of clinicians don’t understand that part of the palliative care role is to assist them in terms of the suffering that they are witnessing as frontline caregivers,” Rosa notes.
Clinicians cannot engage with patients who are sedated or unconscious. Palliative care can assist clinicians with the communication skills needed to offer their families support. “Part of the reason palliative care is so powerful is it’s not only a patient-centered model, but also a family-centered model,” Rosa observes.
• Clinicians might contact palliative care much too late. “If the palliative care consult is delayed to the point of no return, we are seeing patients and families at the extreme end of crisis,” Rosa says.
This forces palliative care to engage in a difficult conversation when there are few, if any, medical decisions left to be made. “The palliative care team that shows up at that point may not represent support anymore. That team may now represent death’s doorstep,” Rosa says.
It will be that much harder to build a therapeutic relationship with limited time, in high-stakes emotional circumstances.
Ideally, the family already knows the palliative care team, who has been addressing their social, religious and spiritual, legal, ethical, and cultural needs for some time, and addressing anticipatory grief and preparing for loss. Then, at the end of life, when the patient is decompensating and dying, trust has been established. “Palliative care is all about relationship-based care,” Rosa explains.
- Rosa WE, Ferrell BR, Mazanec P. Global integration of palliative nursing education to improve health crisis preparedness. J Contin Educ Nurs 2021;52:130-135.
- Rosa WE, Ferrell BR, Wiencek C. Increasing critical care nurse engagement of palliative care during the COVID-19 pandemic. Crit Care Nurse 2020;40:e28-e36.
- Maciasz RM, Arnold RM, Chu E, et al. Does it matter what you call it? A randomized trial of language used to describe palliative care services. Support Care Cancer 2013;21:3411-3419.