My nursing career began on a dedicated inpatient unit at Cedars-Sinai, caring for patients with HIV/AIDS at the tail end of the AIDS epidemic. The veteran nurses on our floor recalled multiple deaths on every shift; fortunately, those days have passed. Many of my patients – mostly men – survived long enough to develop cancer and needed treatment for their malignancy, in addition to the antiretroviral drug cocktails and treatments for opportunistic infections.
I remember one patient who survived AIDS and was living with end-stage renal failure, only to later develop lymphoma. His life and death started me on the path to practicing palliative care.
Working with him one night, he confided that he was tired and wanted to stop everything – his HIV medications, his dialysis, and his chemotherapy. He had been through enough, he told me, and he just wanted to rest.
Over the next several days, we nursed him with love, humor, companionship, and medicine to ease his suffering. We were able to talk about his wishes and to honor those wishes, providing him with care that saw him as a whole person much greater than the sum of his medical issues. He died peacefully, just as he wanted. It exemplified palliative care.
Caring for Patients and Caregivers
Despite my early experience, palliative care is not just for those patients who are nearing the end of their lives; it is for anyone with a serious illness, anywhere along their illness trajectory. For patients and their families, these are some of the most vulnerable and stressful moments of their lives. For the health-care providers caring for them, there may be feelings of helplessness or distress that they can’t do more. Both groups need the support of our palliative-care team; we are caring for our caregivers while simultaneously attending to our shared patient and his or her family.
Patients and their families, as well as health-care providers – need the support of our palliative-care team; we are caring for our caregivers while simultaneously attending to our shared patient and his or her family.
Now, having spent the past seven years as a palliative-care nurse practitioner (NP) in a large teaching hospital, I have had the privilege of caring for a diverse group of patients and the good fortune to work with exceptional clinicians.
Our team consists of palliative-medicine physicians, NPs, and social workers, and our inpatient consult service sees patients wherever they are admitted – from internal medicine to cardiothoracic intensive care and every unit in between.
Consulting providers ask for our help caring for patients with serious illness for two broad reasons: They need our skills to treat the symptoms caused by an illness or its treatment, or they need our expertise eliciting patients’ hopes and fears about where they are in their illness trajectory and what might lie ahead.
Supporting Vulnerable Patients
Regardless of where we see them or for what reason, many of our patients have a cancer diagnosis – often among a host of other medical issues. Palliative medicine has been practiced at Cleveland Clinic’s Taussig Cancer Institute since its inception in 1988, but it is only in the past few years that our team has worked in tandem with our solid-tumor oncology colleagues as an embedded service. And it is only in the past few months that we have begun working as an embedded team within the bone marrow transplant (BMT) service.
Both projects are spearheaded by Susan McInnes, MD, a staff physician on our palliative medicine team who is trained as both an oncologist and a palliative-medicine specialist. The support of Navneet Majhail, MD, MBBS, MS, the director of our blood and marrow transplant program and newly appointed president of the American Society for Transplantation and Cellular Therapy, also has been vital.
In the new endeavor with our BMT program, the goal is to extend our expertise in supportive care to a group of patients who traditionally have had limited contact with palliative-care services. As an embedded service, we participate in interdisciplinary rounds, provide education and support, and work collaboratively with the oncology team to give the best possible care to patients and their families at a time when they need it the most.
The patients who are coming in to the hospital for a BMT often have endured long admissions for induction therapy on our leukemia unit, are in remission and (hopefully) finally feeling well again, and are now willingly submitting to the transplant process, despite the risks.
For many patients with a hematologic malignancy, BMT is the treatment that will cure them; for others, the outcome is less certain.
Our project focuses on reaching patients undergoing allogeneic BMT, as they represent the group most likely to need our support in both the short and long term. Our interactions with them typically involve management of symptoms, having focused conversations about what to expect from treatment, or both. We also are seeking out patients – regardless of where they are in their transplant process – with intractable symptoms that are not adequately controlled with the array of medications on hand. Our team is available to support patients, families, and our colleagues throughout the journey from diagnosis to transplant and even at the end of life.
Hope in Palliative Care
I am one of three palliative-care providers sharing coverage of the BMT service. As an NP with just a few years of oncology experience as a registered nurse caring for patients with hematologic malignancies and solid tumors, but with many years of hospice and palliative care experience (including certification as an advanced practice hospice and palliative care nurse), I have faced a steep learning curve working with patients scheduled to undergo transplant.
Fortunately, we collaborate with a dedicated group of transplant NPs, physician assistants, nurses, social workers, and a rotating schedule of physicians who are all highly skilled and willing to help get us up to speed with the ever-evolving landscape of cancer care. That ranges from simple questions like how best to treat a headache in a patient who just received a chimeric antigen receptor T-cell infusion to big-picture questions like how to provide care that will give patients the best chance of survival while preserving their quality of life. Other issues center on the ongoing struggle between the very human desire to maintain hope and the need to face one’s own mortality.
As clinicians caring for patients who are willing to undergo BMT and all that entails, how do we address the potentially grim reality of a patient’s illness and the limitations we face, while also acknowledging the remarkable gains we have made in cancer care? These are questions that I’m certain we will continue to grapple with, and I’m just as certain that we are more likely to find the answers by working together.