Q: In April 2002, our hospice program made the decision to admit patients who were receiving a variety of palliative therapies including chemotherapy, total parenteral nutrition, and intravenous antibiotics, to name a few. Many of these so-called palliative therapies require me to perform tasks that are associated with curative treatments, such as drawing blood and monitoring for side effects of chemotherapy. Since making the decision to accept these patients, the program has grown and our workload has increased tremendously. It no longer feels like I am doing hospice nursing. I am not sure what to do.
-Frustrated Hospice RN
A: How you are feeling is not unique, and applies to many hospice nurses who are now in the same situation of providing more palliative therapies to terminally ill patients. A look back at the evolution of hospice in the United States may help you understand what is occurring at the present time. The first demonstration project to promote the establishment of hospice programs in 1974 was funded by the National Cancer Institute. 1 In 1979 the Health Care Financing Administration, attracted by the results of the 1974 study, established grants to study the cost of dying. 1 The Medicare Hospice Benefit originated from the findings of this study. The vast majority of patients cared for by hospice nurses during this time had a cancer diagnosis.
As hospice evolved and access to care improved, programs began to admit patients with noncancer diagnoses, such as end-stage cardiac disease, emphysema and chronic obstructive pulmonary disease, and dementia. Many hospice nurses were challenged by the admission of patients with noncancer diagnoses to their programs. This challenge became even greater when hospice programs began to admit people with AIDS, and all of the associated therapies that went with this disease. People with AIDS admitted to hospice programs often had complex palliative therapies that forced hospice nurses to rethink and redefine their practices.
Since the implementation of the Medicare Hospice Benefit, the average length of time a patient spends on hospice has steadily declined, from approximately 70 days in 1983, to 48 days in 2000. 2 And while the mortality rate for cancer has changed very little, 2 during this same time period advances in oncologic palliative therapies have grown exponentially. Once again hospice nurses are being required to redefine their practice to meet the needs of the dying. The recent and rapid growth in your program reflects the fact that more terminally ill people are getting care previously not available to them.
It is important for all hospice nurses to examine the reasons why they chose to work with dying patients and their families. I feel comfortable in writing that most did not choose this type of work to improve their venipuncture skills, increase their knowledge of chemotherapy, or hang antibiotic infusions. We do this work because of our care and compassion for the terminally ill and their families. If patients and families are denied access to hospice care because the patient wants one more dose of chemotherapy, or because the patient elects to continue total parenteral nutrition because he is 35 years old and wants as much time as possible with his 3-year-old daughter, have we truly demonstrated the care and compassion that brought us to this work in the first place?
The decision to continue to work in hospice and palliative nursing is a personal decision, and one only you can make. However, redefining your practice and becoming more accepting of palliative therapies will ultimately provide you with the opportunity to do more of what you love, care for dying patients and their families.
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