Several years ago, Linda, a 37-year old graphic artist, was diagnosed with Hodgkin’s lymphoma. Her disease took a roller-coaster course: diagnosis followed by radiation and chemotherapy, then lymphoma recurrence followed by chemotherapy using different antineoplastic agents and, finally, disease advancement and death.
Linda was single and lived alone. Her parents, both of German heritage, were elderly but helped in any way they could. Her sole sibling lived several hundred miles away. Linda’s spiritual belief system offered solace and peace through prayer and an active church life.
Despite her many treatments, the disease ravaged her body. On three occasions, she experienced cardiac tamponade requiring transfer to the critical care unit (CCU) for closer monitoring, where she was away from family and friends. Emergency pericardiocentesis eased her symptoms—but just for a day or two. A surgeon who was consulted to consider a permanent pericardial window concluded she was too ill to endure the operation and feared she might die on the table.
Alone, frightened, and dying, Linda had limited physical, emotional, and spiritual support to help her through the most vulnerable time of her life. The oncology clinical nurse specialist (CNS) stepped forward to offer as much assistance as her experience and practice knowledge allowed. But without dedicated palliative care service available, valuable opportunities were squandered.
How do I know this? I was Linda’s oncology CNS. She and I had discussed her willingness to risk dying on the operating table to prevent a recurrence. Through advocacy, I fought to have the surgeon proceed with the pericardial window. Linda understood she was dying and was prepared to allow death to occur; she just didn’t want to experience another tamponade episode. The surgery was a success, but she died in the CCU the next day.
A “good” death?
Was Linda’s death a “good” one? Looking back, I can say it was the best we could have made it—but only because at that time we lacked the knowledge of hospice and palliative care needed to make it better.
Until then, I thought I’d learned a lot about end-of-life care during my years of practice. By taking courses, going to conferences, and through other means of continuing education, I believed I was knowledgeable about providing care to cancer patients and their families.
But when I entered the field of hospice and palliative care, I discovered there was a great deal I didn’t know. Realizing how much knowledge I’d lacked and the depth of my naiveté humbled and embarrassed me.
The birth of a nursing specialty
Hospice and palliative care is a relatively new nursing specialty. In the United States, hospice was founded in the mid-1970s. Nearly 15 years later, acute care facilities began to question the quality of end-of-life care in hospitals. Through a grant provided by the Robert Wood Johnson Foundation, the SUPPORT study was launched. Study outcomes showed that end-of-life care in U.S. hospitals wasn’t consistent with the patient’s wishes. Pain went unrelieved, patients died in intensive care units away from family rather than in their homes surrounded by loved ones, and the information physicians shared with them was incomplete and unrealistic. It was time to challenge healthcare providers to improve quality of life for patients with life-threatening illnesses. Thus, the palliative care movement was born.
Over the past decade, the hospice and palliative care specialty has made tremendous advances. The National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care were written to indicate expectations of the palliative care continuum, including hospice, to ensure appropriate end-of-life and bereavement care.
Nursing has been integral to these advances. The Hospice Nurses Association recognized the need to expand its specialty to include palliative care; thus,
it soon became the Hospice and Palliative Nurses Association (HPNA). Its voice has been instrumental in the evolution of care. Through relationships with partners in the field as well as through education and research, HPNA and its members have charted a course to provide the necessary skills and knowledge to those specializing in this area, thereby advancing the specialty. (See The eight domains of palliative care.)
An expanded focus
Over the years, the focus of education and hospice has changed. Early on, only cancer patients were referred to hospice. Then the emphasis was expanded to include the needs of those facing other life-threatening illnesses. After the SUPPORT study, care to this segment of the population grew. Today, approximately 48% of hospice patients are cancer patients while the other 52% have noncancer diagnoses, such as renal disease, chronic obstructive pulmonary disease, heart failure, stroke, amyotrophic lateral sclerosis, and dementia.
Scope and standards of palliative care practice
The HPNA publication Hospice and Palliative Nursing: Scope and Standards of Practice (published through the American Nurses Association [ANA] and available at www.hpna.org/Item_Details.aspx
?ItemNo=HPN22) includes information appropriate for both advanced practice nurses (APNs) and generalist nurses. Because hospice and palliative care focuses on the interdisciplinary nature of our specialty, HPNA has written scopes and standards for each level of the nursing team—APN, registered nurse, licensed practical/vocational nurse, and nursing assistant. Additionally, HPNA has published competencies for each level. These resources are available at www.hpna.org.
A humbling experience
Defining the work of the hospice and palliative specialty has been energizing. I’m humbled by what I’ve learned over the past 7 years. My experience has taught me to listen to the advice of those who’ve gone before me and has driven home the point that sometimes we don’t know what we don’t know. And what we don’t know can hurt the patient and family, because our knowledge gaps may fail to meet their needs in the eight domains of palliative care.
A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators. JAMA. 1995;272:1591-1598. www.ncbi.nlm.nih.gov/
pubmed/7474243. Accessed February 19, 2009.
National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 2004. www.national
consensusproject.org. Accessed February 19, 2009.
Judy Lentz is Chief Executive Officer of the Hospice and Palliative Nurses Association in Pittsburgh, Pennsylvania.