Let me talk : an advance care planning programme developed for the frail nursing home residents

Abstract

Background Medical advancement has successfully extended human longevity, but it also leads to a controversial debate between quantity and quality of life. Often, question about whether life-sustaining treatment has posed burdens or benefits in the last days of life is raised. If the patient has not made explicit his/her care expectations, the treatment decision will eventually rest in the hands of family and health professionals. This decision-making process may likely place great emotional burdens on them. This kind of dilemma more often emerged among frail older people as they are more susceptible to cognitive impairment, morbidity and mortality. Discussion about end-of-life care can help frail older people and their family to better prepare for decision-making regarding life-sustaining treatment. It also empowers them to exercise their right to self-determination. However, relevant care planning seldom takes place in advance due to its sensitive nature. Rooted from the customary belief that frail older people are vulnerable and deserve protection, open discussion related to death and dying issues is not encouraged. Such avoidance approach undoubtedly isolated them and left their concerns unattended. Hence, this study challenged the current practice which excludes the frail older people from their end-of-life care planning process. Aim The first part of the study was a survey for profiling the quality-of-life concerns of nursing home residents. An advance care planning programme is then developed for them, particularly for the frail group, grounded on the findings and experience gained in the survey study. The major purposes of the programme were to clarify their end-of-life care preferences and facilitate communication regarding care preferences among them, their family and health professionals. Design This was a two-phase study. Phase One was a cross-sectional descriptive study to explore the quality of life concerns and end-of-life care preferences of 283 frail residents in ten nursing homes. The Quality-of-Life Concerns in the End of Life Questionnaire [QOLC-E], which was inductively derived from patients with terminal and advanced diseases in the local setting, was revised and validated among frail older people. The modified version [mQOLC-E] was then used to assess the major concerns of the nursing home residents and monitor the effect of the advance care planning programme on their quality of life. Phase Two study was a 1-year quasi-experimental pre and post-test control group study to test the feasibility of the Let Me Talk advance care planning programme among frail nursing home residents. The programme was empirically developed based on the observations gained from Phase One study. Storytelling approach was used to engage the residents in sharing and reflecting on their life and illness experiences and to explore their end-of-life care preferences. Quantitative and qualitative data were collected before and after the implementation of the programme at six-month interval to monitor the programme effects. Results The psychometric tests showed that the mQOLC-E was valid and reliable in assessing the quality of life concerns of frail older people. By means of that, the least satisfactory quality-of-life concerns reported by both frail (n=160) and non-frail (n=123) nursing home residents were existential distress, value of life and food-related concerns. Over half of them (62.3%) were able to articulate their life-sustaining treatment preferences. Their major end-of-life care expectation was to maintain comfort care (46.2%). Twenty-four per cent of the respondents wanted to be involved in their end-of-life care decision-making process, and 18.1% believed that they were the most crucial decision-maker in this regard. In Phase Two study, 121 frail nursing home residents agreed to participate. The participation rate of 93.1% with an adherence rate of 64.5% demonstrates that the Let Me Talk programme was well received. Findings obtained at the second follow up assessment (T2) showed that 90.5% of participants in the intervention group and 77.7% in the control group were able to indicate their choices regarding the use of life-sustaining treatment at the end-of-life condition. The stability in life-sustaining treatment over six months was significantly higher in the intervention group than in the control group (kappa = 0.529, p <= 0.001). There were also significantly more participants in the intervention group communicated their end-of-life care preferences with their families or healthcare providers than in the control group (35.7% vs. 11.1%,p = 0.012). After adjusting for demographic variables, the odd ratio of communicating end-of-life care preferences is 4.52 (95% CI, 1.24 - 16.41). Throughout the programme, five approaches to treatment-limiting decision making were identified: holding on to life, weighing benefits, planning ahead, avoiding and procrastinating. In addition, findings showed that the Let Me Talk programme had a positive effect on relieving the participants' physical discomfort and existential distress. Conclusion This study was an initial step to acknowledge the perspective of nursing home residents towards quality-of-life concerns and life-sustaining treatment. The study findings demonstrated that the nursing home residents were open to talk about end-of-life care issues and the Let Me Talk programme was feasible in clarifying their life-sustaining treatment preferences and encouraging communication in this regard between them and family or healthcare providers. Recounting of life experience and embedded values enabled their preferences be understood in the personal context. The process which also enabled the participants to regain a fuller perspective of their own lives helped to reaffirm their life value. This study has shed light on how to integrate advance care planning into the nursing home care practice. The five approaches to treatment-limiting decision making identified in the study were instrumental for designing appropriate advance care planning strategies for individuals. Yet congruence between the care preferences and actual care received in last days of life worth further investigation.