Barriers to Hospice Care Utilization: Survey Findings
Barriers to Hospice Care Utilization: Survey Findings
Hospice care has been shown to improve patient quality of life, reduce depression, prolong life (reviewed by McGorty and Bornstein, 2003), and reduce the costs associated with end of life (EOL) care (Temel et al., 2010). As McGorty and Bornstein (2003) point out, however, hospice care in the United Kingdom is more widely used than in the United States, with 60% of all U.K. cancer deaths occurring in Hospice care compared to only 42% in the U.S. The possible reasons for this disparity include patient-, physician/nurse practitioner (NP)-, and administrative-associated factors that result in hospice underutilization. Of primary concern are the barriers associated with physicians and NPs because they act as gatekeepers to hospice care.
Researchers have shown that only about 24% of physicians surveyed were familiar with hospice care, while the rest had limited understanding of the services hospice care provides and little familiarity with hospice referrals (McNeilly and Hillary, 1997). Another concern is overoptimistic estimates of patient survival and Christakis and Lamont (2000) found that 63% (N = 468) of the physicians in their study fit within this category. One solution would be to extend the six-month limit on life expectancy required under the Medicare Hospice Benefit (Weckmann, 2008). Another concern is physicians (28%) feeling uncomfortable about discussing EOL care with patients (McNeilly and Hillary, 1997) or being unwilling to stop aggressive treatment strategies (reviewed by McGorty and Bornstein, 2003).
A survey was designed to better understand why hospice care is underutilized in the U.S., as seen through the eyes of professional caregivers. Students in an advanced practice nursing program were the primary respondents asked to participate, in addition to nursing school faculty. What follows is an analysis of the resulting data.
Results and Discussion
Survey respondents were highly experienced nursing professionals (N = 24), with almost 80% having 11 years or more experience working as a nursing professional; however, 87.5% of respondents had 2 years or less of hospice care experience (Table 1). This data indicates that most respondents are career nurses experienced in patient care, but not hospice care. Most respondents would therefore have encountered EOL considerations in a primary care setting or a hospital department, when hospice care referral decisions would most likely occur.
Table 1: Years of Experience in Nursing and Hospice Care
16 or more yrs
Years Nursing Experience
9 or more yrs
Years Hospice Experience
The data presented in Table 2 supports this finding. More than 50% of respondents at least occasionally helped patients plan EOL care, but only a small percentage have provided care directly to patients in a hospice setting . Given that referring physicians/NPs are expected to maintain their primary care relationship with hospice patients (Weckmann, 2008), this data suggests that few patients actually utilized hospice services.
Table 2: EOL Planning vs. Care Experience
EOL Planning Experience
EOL Care Experience
The vast majority of respondents (96%) felt that hospice care is underutilized (Table 3). In fact, two thirds of respondents strongly agreed and only 1 respondent disagreed. Given that most respondents have experience helping patients plan EOL care and few actually care for patients in a hospice setting, one conclusion based on this finding would be that hospice care referrals are rarely made and/or accepted during EOL care planning.
Table 3: Is Hospice Care Underutilized?
McGorty and Bornstein (2003) reduced the causes of hospice underutilization to the three categories of patient/family, physician, and administrative factors. Of the three categories, physicians/NPs were cited by most respondents as the most important reason for hospice care underutilization (Table 4). Patient/family was next and administrative hurdles last. However, the magnitude of the differences between the three categories was modest, suggesting all three contribute significantly to hospice underutilization. This finding is consistent with the research literature (McGorty and Bornstein, 2003).
Table 4: Are Physicians/NPs, Patient/Family, or Administrative Hurdles to Blame for Hospice Care Underutilization?
Note: Totals across categories do not equal 100% because one respondent replied N/A to one ranking and one respondent ranked patients as fourth in importance.
The rest of the survey examined in more detail the role that physicians/NPs play in hospice underutilization. Table 5 lists five explanations taken from the literature (McGorty and Bornstein, 2003) for why physicians contribute to hospice care underutilization. Respondents ranked physicians/NPs uncomfortable "talking about death" as the top reason, followed by being "unfamiliar with hospice" care and "cannot give up" on a patient's struggle for survival. Physicians/NPs "overestimating life span" of patients was slightly ahead of having a "poor view of hospice" care, but both essentially came in last.
The near equally rankings of the first three choices depicted in Table 5 suggest all three play a role in hospice care underutilization. It should be noted that the category "overestimate life span" was ranked second by several respondents, suggesting that a few considered this an important cause of hospice underutilization. Overall, the data depicted in Tables 4 and 5 reveal that hospice care underutilization is due to multiple physician/NP-associated factors.
Table 5: Explanations for Physician/NP Underutilization of Hospice Care
Talking about Death
Unfamiliar with Hospice
Cannot 'Give Up'
Overestimate Life Span
Poor View of Hospice
Two questions were included in the survey to help elaborate and validate two of the factors listed in Table 5. The first question queried respondents about a physician's/NP's poor view of hospice care and whether this view was based on the perception that it represented a form of alternative medicine. Most respondents answered "No" (46%) and another 29% answered "Sometimes" (data not shown), which suggests that experienced nursing professionals generally do not perceive hospice care as alternative medicine, nor do the doctors they interact with. The second question reexamines the belief that physicians/NPs fail to refer patients to hospice care because they are unwilling to 'give up' on a patient's fight to prolong their life. Two thirds of respondents believed this to be the case sometimes, while another 21% answered "Yes." The responses to both these questions validate the data in Table 5 and provide some confidence in the internal consistency of the survey data.
The explanations for physician/NP hospice care underutilization listed in Table 5 were taken from the research literature, but to avoid limiting respondents to these few explanations an open-ended essay questions was provided. The various answers were analyzed and grouped into categories, thereby providing a more concise overview of the responses.
Table 6: Respondent Explanations for Underutilization of Hospice Care
Physician/NP Uninformed about Hospice Care
Patient/Family Unfamiliar with Hospice Care
Patient Fear of Dying
Family Cannot 'Give Up' on Loved One
Physician/NP Uncomfortable Talking about Dying with Patient
According to the data presented in Table 6, the patient and family play a prominent role in hospice care underutilization. The top answers were primarily concerned with a lack of knowledge about hospice care by all parties, in addition to patient fear of dying, and the unwillingness of the family to 'give up' on a loved one's struggle to survive. Overall, patient/family factors dominated the most common answers and only "physician/NP uninformed about hospice care" made it into the top ranked answers.
There were a few redundant queries included in the questionnaire that could provide some indication of the internal consistency of the survey data. The data in Table 4 indicates that physician/NP-associated factors lead patient/family and administrative factors in importance, but the data in Table 6 suggests that patient/family factors are co-dominant. Physician/NP uninformed about hospice care was a top answer in Table 6, but none of the other physician-associated factors listed in Table 5 made it into the top answers. The disparity between the data presented in Tables 4, 5, and 6, however, may not represent a significant flaw in the survey because the differences in rankings were consistently small.
If the results of the survey are accepted at face value, physician-associated factors are the leading cause of hospice care underutilization; however, patient/family-associated factors are equally important. If the two categories "administrative hurdles" and "ICU/ED procedures" could be grouped under administrative/clinical workflow hurdles (Table 6), then this category would move into the top answers as well. The overall conclusion based on the data presented here is that there are a number of factors contributing to hospice care underutilization.