Dissertation on "Tackling Provider-Associated Barriers Concerning End-Of-Life Dementia Care"

Dissertation 21 pages (5857 words) Sources: 15 Style: APA

[EXCERPT] . . . .

Participants were asked to complete the consent form and questionnaire, before returning both in the provided envelope. Participants then reviewed the ADEPP tool and decided whether to apply the information contained in the tool to their practice. Participants who expressed an interest in being interviewed were contacted by phone and the answers recorded with pen and paper. The participation rate obtained by Snyder and colleagues20 was 42%, but the questionnaire return rate obtained in the current study was only 21%.

Analysis and Evaluation Plan

The primary themes used to evaluate the questionnaire data, which were based on the National Consensus Project,27 were the following:

1. Clinician comfort with discussing EOL care plans with patient and family

2. Knowledge and attitudes about palliative and hospice services

3. Timeline of EOL planning, palliative care initiation, and referral to hospice

4. Perceived barriers for palliative or hospice care referrals

Since this was primarily a descriptive study, quantitative analysis was limited to the difference in the recommended and observed timing of ACP, palliative care, and hospice services discussion initiations during the disease process. Each variable was compared using the Wilcoxon's rank sum test.

The interview data will be analyzed for evidence of increased clinician comfort with EOL planning, knowledge about EOL planning, awareness and implementation of recommended timelines for palliative and hospice care referrals, utilization of palliative and hospice services, and/or diagnostic accuracy.

Results

Questionnaire

Of the 100 questionnaires mailed to providers in Lee County, Florida, only 21 were completed and returned (Table 1). Among the participants who returned questionnaires, 8 were medical doctors, 4 osteopathic doctors, and 9 nurse practitioners. The vast majority, 86%, practiced in family medicine rather than internal medicine and only 14% had a sub-specialty (2 geriatric and 1 family). Over 95% had at least 6 years of experience practicing medicine and nearly a quarter had over 20 years of experience. The age range was between 30- and 80-years, while the mean and median ages were almost identical at about 57-years of age. The gender mix was balanced, with 52% women, and the vast majority reported being White (81%). Sixty seven percent reported having a personal advance directive (AD), while 81% had helped family members and friends with ACP in the past. Fifty seven percent had both a personal AD and had helped family and friends with ACP, while only 2 participants had neither.

The percent of patients per survey participant with progressive, chronic, life-limiting diseases were 50% (median) and 53.4% (mean), respectively (Table 2). By comparison, the percent of terminally-ill patients being treated by each participant was 5% (median) and 32% (mean), respectively, which indicates that most participants were treating only a few terminally-ill patients, while a small number of participants were treating a large number of these patients. Participants also reported discussing ADs with 33.4% of patients with a progressive, chronic, life-limiting condition and 43% of terminally-ill patients. The mean number of palliative and hospice referrals made by participants within the past six months was 7.6 and 4.9, respectively. This data suggests only a few patients may be benefitting from palliative and hospice services among the many who may qualify.

When participants were queried about perceived barriers to palliative and hospice referrals, 43% responded in the affirmative (Table 3). Participants who took the time to note perceived barrier(s) on the questionnaire attributed resistance to the wishes of patients and family members, while none mentioned system-, organizational-, or provider-associated barriers. In response to a related question about who should be primarily responsible for initiating ACP discussions, 38% believed primary care providers should be responsible and another 38% felt this duty should be shouldered by palliative care consultants (Table 3). One participant believed attorneys should be responsible and another assigned this responsibility to specialists, but 3 participants felt that patients should be primarily responsible for initiating ACP discussions. Clearly, there is a lack of consensus about who should be responsible for initiating a discussion about ACP, although there was a slight bias in favor of specialists and hospitalists (Fig. 1).

When participants were queried with questions designed to reveal how well they understood palliative and hospice care, less than half agreed that palliative care was equivalent to hospice care (Fig. 1). Most participants, however, understood that palliative care is part of hospice care but not the reverse. When queried about whether palliative care should be used only when patients have less than six months to live, most disagreed. Most also understood that the sole purpose of palliative care was not the creation of an AD.

Participants were more evenly divided when queried about the ability of palliative and hospice care specialists to grant ACP wishes to patients and family members or whether ACP is too time-consuming and too upsetting to patients and families (Fig. 1). This result may indicate a significant level of ambivalence among providers about the clinical value of ACP, an interpretation supported by the perceived low clinical utility of ACP documentation (Fig. 1). Provider comfort concerning ACP consults or when asked to determine a prognosis were also low, which is consistent with a general theme that ACP can be intrusive, unwelcome, and has little clinical value.

Providers were asked to recommend the optimum time to initiate ACP discussions with patients and family members during the disease process (Fig. 2). The data revealed wide disagreement, ranging from a peak at disease onset to 3 months before death. The recommended start of discussions concerning palliative and hospice care also ranged from disease onset to 1 week before death and disease onset to the moment of death, respectively. When queried about the actual or observed timing of ACP, palliative, and hospice discussion initiations, most providers reported later initiation times. The difference between the recommended and observed timing for initiating these three discussions were significantly different using the Wilcoxon's rank sum test (ACP, P = .0003; palliative care, P = .0006; hospice services, P = .0003).

Interview

Nine of the questionnaire participants agreed to be interviewed by telephone concerning the clinical acceptance and utility of the ADEPP tool. The demographics of the interviewees were not that different from the questionnaire participants, but there were more MDs (56%) than NPs (33%) and all internal medicine providers completing the questionnaire also agreed to be interviewed (Suppl. Table 1). The same was true for providers claiming a subspecialty. Interviewees were slightly older (2.4 yrs) and mostly White (89%). In terms of having a personal AD and experience helping family and friends with ACP, there was no difference. The patient demographics of the interviewees were generally similar to questionnaire participants, except the percent of patients with progressive, chronic, and life-limiting conditions, who the provider discussed an AD with, dropped from a median and mean of 20% and 33.4% (Table 2) to 1% and 19% (Suppl. Table 2), respectively. The percent of terminally-ill patients that providers engaged in AD discussions also dropped from a median and mean of 50% and 43% to 5% and 31%, respectively. Despite the drop in AD discussions with patients, the number of palliative and hospice referrals was equivalent to those reported by questionnaire participants. The percentage of interviewees perceiving barriers to referrals remained the same, as did the type of professions believed to be primarily responsible for initiating ACP discussions; however, there were fewer interviewees who believed primary care physicians should be primarily responsible for initiating ACP discussions and more who assigned this responsibility to palliative care consultants (Suppl. Table 3).

When interviewees were asked whether the ADEPP tool was clinically useful, seven answered yes, one stated somewhat, and one answered no (data not shown). The interviewee who answered in the negative believed the tool was inappropriate for general family practice, which is consistent with the belief held by several interviewees that the tool would be most useful in NHs and acute care settings. When asked whether they would use the tool in their practice, the same number answered in the affirmative; however, when asked whether they would recommend the tool to colleagues the same number said yes, but with caveats. Two interviewees would limit their recommendation to clinicians working in NHs and two would recommend that their colleagues evaluate the tool before use. Five interviewees reported the tool helped them feel more comfortable discussing EOL planning with patients and family members, due in large part to the reinforcement value of the information provided. Only one provider, however, believed the tool changed their attitude towards hospice care, by clarifying the need to refer patients to palliative and hospice care sooner. There was agreement by several interviewees that the information provided by the ADL section was somewhat redundant and the current format too bulky. Several interviewees suggested the information should be reduced to a laminated, pocket-sized card or cards. Overall, the majority of providers felt the information was concise, well-thought out, relevant, and clinically valuable. Importantly, several providers reported implementation of the tool in their practice.

The final interview question… READ MORE

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