End of life discussion in an academic family health team in kingston, ontario, Canada.

BACKGROUND: End-of-life (EOL) discussions remain difficult in non-terminal patients as death is often perceived as a taboo and uncertainty. However, the call for proper EOL discussions has recently received public attention and media coverage. Evidence also reveals that non-terminal patients are more satisfied with health-care encounters when EOL has been discussed. OBJECTIVES AND METHODS: The objective of this study was to explore the prevalence of EOL discussions in non-terminal adult patients, the perceived barriers to such discussions and suggested methods for improvement. A study mixed-methods study was performed by a group of PGY1 family medicine residents in an academic health team in Kingston, Ontario.
RESULTS: EOL discussion was performed in a very small proportion of non-terminal patient encounters. Compared with attending physicians, residents were less likely to discuss EOL issues and reported more perceived barriers.
CONCLUSION: Our findings reflect the need for an early and open approach in conducting EOL discussion for non-terminal healthy patients.

Introduction

End-of-life (EOL) discussion is a challenging issue in primary care as death often conjures negative connotations in both patients and clinicians.[1] Unfortunately, lack of proper EOL discussion will leave the patient with feelings of conflict, uncertainty and unpreparedness when confronted with dying. Dula and Williams also pointed out that there are contradictory views between different ethnic origins when it comes to EOL discussion, in particular, the African-Americans often prefer more aggressive care than their Caucasian cohorts.[2] Recently, concern is mounting for better EOL discussion between healthy individuals and health-care providers to ensure a smoother transition and avoid ambiguity regarding life support measures. Nevertheless, EOL discussion is rarely a regular agenda item of regular doctor-patient consultation. There is also wide variation in access to EOL care.[3] When advanced EOL directives were absent, health-care providers often felt compelled to provide futile therapy under legal pressures, especially in intensive care settings.[4] Despite 70% of US population wish to die at home, the same percentage end up dying in hospitals and nursing homes.[5] On the contrary, terminal patients who had EOL discussions reported better quality-of-life and entailed lesser care costs in their last week of life.[6]

Objectives and Methods

In order to explore the prevalence of EOL discussion in non-terminal patients and clinicians’ views on barriers to EOL discussion, we performed a mixed-methods study, which included a patient records review followed by an online survey to medical practitioners in an academic Family Heath Team in Kingston, Ontario. From the electronic medical records database, 350 patient records were randomly selected and were screened for incidence of EOL discussion using the key terms. We then distributed an anonymous on-line survey to all medical practitioners (attending physicians and PGY1 residents) in the health team. The survey consisted of seven structured questions exploring the respondents’ willingness to initiate EOL discussions, the type of patients that warrant discussion, potential barriers to discussions and improvements that may eliminate such barriers.

Results

Out of 350 medical records, 69 of them were initially flagged after electronic search using the relevant key words. Further manual analysis of paper records confirmed four patients (1%) who had a relevant and documented EOL discussion. The online survey was distributed by E-mail to 100 primary care providers (43 attending physicians, 53 PGY1 residents and four nurse practitioners) and a response rate of 37% was recorded [Figure 1a, b]. A number of perceived barriers to EOL discussion were identified [Table 1]. Finally, we recorded factors that may encourage more EOL discussions: provision of patient information pamphlet, tailored-made worksheet for patients and families, modifications in the electronic medical record for documenting EOL discussions and structured teaching sessions for care providers to facilitate EOL discussions.

Figure 1a

Amongst the respondents, 62% said they have provided end-of-life discussions and out of the 38% who said no, 93% of them were PGY1 residents

Figure 1b

All respondents agreed that terminal illness warrant an end-of-life (EOL) discussion, only 6% of attending physicians would initiate EOL discussion if the patient is below 65 year of age

Table 1

Perceived barriers to EOL discussions

Discussions and Conclusion

Existing data on the prevalence of EOL discussions in non-terminal patients is extremely sparse. Our study revealed that such discussion only happened in 1% of encounters in non-palliative family medicine setting. This contrasts the expressed wish for EOL discussions as revealed by various studies.[789] A recent study in Japan showed that EOL discussion in healthy elderly patients led to more acceptance of advanced directives and less preference of artificial nutrition as the life-sustaining measure.[10] The likelihood of EOL discussion also depends on factors specific to the patients (e.g., age and comorbidity) and to the care providers (e.g., training status and time constraints). One study among healthy older adults showed that patients with recent hospitalization[11] or bereavement from death of a loved one[1112] often facilitated EOL discussions. Ways to enhance EOL discussions would include printed information for patients, prompts in the medical record system and organized teaching for care providers. Having said, our study had limitations: possible biases due to small sample and generalizability of data to the community setting. Nevertheless, we do believe primary care providers are the best suited to conduct and maintain EOL dialog with patients and those EOL discussions should be initiated as early as possible and not to be postponed until the end is foreseeable for the patients. This paper serves to sustain the need for a more proactive discussion of EOL care among non-terminal patients.