You receive a phone call regarding one of your oncology patients currently on home hospice who has a low grade temperature of 100.8°F. She is an 85-year-old woman with multiple myeloma who was recently placed on hospice after a course of radiation therapy as well as apparent deterioration in kidney function and mental status. The question arises as to whether to treat and further investigate the cause of the fever since the patient has a recent history of a urinary tract infection (UTI) that may not have been adequately treated. In this day and age, when the number of patients in hospice is increasing , a question like this can frequently come up; unfortunately, it may lead to confusion that causes delays in the appropriate care of the patient.
In the last 10 years in the United States, there has been an approximately 50% increase in the number of hospice programs and a nearly 75% increase in the number of patients in these programs1. The majority of these programs have similar goals, including symptom management (especially pain control), palliative care, and allowing the patient to die with dignity. A key problem is that the definition of each of these goals can vary considerably from program to program.
For example, “symptom management” can mean very different things to patients, nurses, and physicians. A patient with a fever, decreased urine output, possible dysuria, and slightly altered mental status could benefit symptomatically from some intravenous (IV) fluids and a short course of antibiotics if a a urine dipstick confirms a UTI. In some hospice programs, this may or may not be covered, depending on their hospice philosophy. When patients are recommended for hospice, there usually is a general consensus amongst all parties involved that more invasive diagnostic tests and treatments, such as chemotherapy, are no longer an option. This is not always the case, however, since some hospice patients do receive “palliative chemotherapy.” It is important to recognize that more basic diagnostic tests (ie, a urine dipstick) and treatment (eg, IV fluids and antibiotics) could play a role in significantly improving a hospice patient’s quality of life.
A recurrent issue with hospice care is placing patients in an appropriate program in a timely manner. Approximately 33% of patients placed in hospice die within the first week, and about 10% die less than 24 hours in hospice care1-3. There are a multitude of factors that contribute to the delay in placing patients in hospice; however, the ambiguity of diagnostic and treatment definitions in hospice can represent a major barrier to making the appropriate decision. When the hospice discussion is first initiated, it can take time for the patient and family to fully comprehend what hospice care entails.
Once the idea of hospice is accepted, there are often many different hospice programs to consider that fit the patient’s needs, both idealistically and geographically. Representatives from the hospice programs occasionally will visit the patient in the hospital, before hospice admission, or at home to answer questions about what a specific hospice program covers; however, the answer to that question is often that each clinical scenario will be addressed on a “case-by-case basis”. This is not entirely helpful to a patient and family, as their limited medical knowledge may prevent them from fully understanding how something as simple as a UTI might complicate the clinical picture. As you can see, by the time a patient finds a hospice program they are interested in, weeks may have already passed.
At the end of the day, the transition to hospice is not an easy decision from any perspective: patient, family, physician, or nurse. This transition, however, does not need to be made more difficult than it already is. Hospice programs offer a multitude of impressive services, although they may continue to be underutilized and not fully understood, until there is more uniformity and transparency about hospice care. Reducing the variability between programs, giving more detailed answers other than the “case-by-case basis” explanation, and more organized communication between hospice programs and patients about what they will consider in diagnostics and treatments are just a few basic steps that can be taken to help reduce the confusion surrounding hospice care. The idea of hospice and what it entails can be confusing to health care professionals, so one can only imagine how it is interpreted by patients and their families.
1. NHPCO Facts and Figures: Hospice Care in America 2011. http://www.nhpco.org/files/public/statistics_research/2011_facts_figures.pdf. Accessed January 9, 2013.
2. Christakis NA, Iwashyna TJ. Impact of individual and market factors on the timing of initiation of hospice terminal care. Med Care. 2000;38(5):528-541.
3. Younis T et al. Length of survival in hospice for cancer patients referred from a comprehensive cancer center. Am J Hosp Palliat Care. 2009;26(4):281-287.