Mary E. DiLorenzo, MSN, RN-C, NP-C
Mary E. DiLorenzo, MSN, RN-C, NP-C
As clinical providers, the ability to meet the science of medicine with its physical, emotional, spiritual, and financial impact it has on patients is often unintentionally overlooked or, at the very least, minimized during the active treatment phase of care; therefore, the purpose and potential benefits that result from integrating palliative care early on in the process is missed.
According to a randomized control study led by Areej El-Jawahri, MD, of Massachusetts General Hospital Cancer Center in Boston, 160 patients with hematologic malignancies admitted for autologous or allogeneic HCT noted improvement in quality of life as evidenced by increased understanding of illness, lower rates of depression, anxiety, and symptom burden during hospitalization as a result of receiving palliative care services.
Logically, the next question becomes why haven’t we been more proactive in setting into motion these services, which seemingly only benefit this patient population? In my opinion, it is the historical stigma that surrounds “palliative care” that detracts both providers from implementing it early on in the care plan as well as patients from embracing the resources inherently connected to it.
Palliative care is wrongly thought of as only “end of life” care and consequently often implemented as such. As the ability to transplant older patients with higher risk comorbidities continues to grow, we need to acknowledge that the net result is a patient population with greater needs both emotionally and financially. What happens to the 70-year-old man who has limited financial means because he is not actively working, and then is forced to cope with chronic graft-vs-host disease—an all-too-common and potentially debilitating complication associated with allogeneic stem cell transplantation? It is this scenario, as well as a multitude of others, that must empower providers to truly understand what palliative care is, what it does, who it can benefit, and how to convey it to their patients in an appropriate and timely fashion so that the patient is willing to accept the services that palliative care can provide for them.
This discussion would be remiss if we did not acknowledge, however, that the “end of life” aspect of palliative care does exist, and it, too, is often not discussed until a patient is actively passing or in the immediate days prior to his or her death. Thus, neither the patient nor the patient’s family members truly benefit from the variety of services available to them. Once again, it is the responsibility of the provider and healthcare team to become knowledgeable and comfortable speaking about what is truly important—the quality of life of the patient and how best to optimize it.
The emotional and physical “roller coaster ride” that each of our patients embarks on as they undergo hematopoietic stem cell transplants should automatically guarantee them a holistic care approach of medicine that includes the input and expertise of physicians, nurses, mental health experts, social workers, allied health professionals, and ancillary services—all working in partnership as a palliative care team. It is there that the “missing link” in the care provided for these patients is found.
Mary E. DiLorenzo, MSN, RN-C, NP-C, is an advanced practice nurse in the Blood and Marrow Transplantation Program at John Theurer Cancer Center in Hackensack, New Jersey.