Edel Daly

Measuring the impact of menopausal symptoms on quality of life.

OBJECTIVE--To examine the impact of menopausal symptoms on the overall quality of life of women. DESIGN--Data collection with a questionnaire administered by an interviewer, incorporating two different quality of life measurement techniques (time trade off and rating scale). SETTING--Specialist menopause clinic and two general practices in Oxford. SUBJECTS--63 women aged 45-60 years recruited opportunistically during a clinic or appointment with a general practitioner; no exclusion criteria. RESULTS--Subjects gave very low quality of life ratings for health states with menopausal symptoms. The time trade off method of measuring preferences for these health states (on a scale from 0 to 1, where preference for full health is given as 1) yielded utility values of 0.64 for severe menopausal symptoms and 0.85 for mild symptoms. The rating scale measurement technique yielded even lower values: utilities of 0.30 and 0.65 were obtained for severe and mild symptoms respectively. Kappa scores indicated that the two methods produced results that were poorly related but not contradictory. Comparison of quality of life ratings before and after treatment with hormone replacement therapy showed significant improvements: with the rating scale measurement technique mean increases in utility values after the relief of severe and mild menopausal symptoms were 0.56 and 0.18 respectively. CONCLUSIONS--Quality of life may be severely compromised in women with menopausal symptoms, and perceived improvements in quality of life in users of hormone replacement therapy seem to be substantial. This emphasises the need to include quality of life measurements when assessing outcomes of hormone replacement therapy. Several limitations may exist with widely applied measurement techniques, calling for the development of appropriate and well validated instruments for measuring quality of life associated with reduced health states.

Advance care planning: A systematic review of randomised controlled trials conducted with older adults.

Advance care planning (ACP), involving discussions between patients, families and healthcare professionals on future healthcare decisions, in advance of anticipated impairment in decision-making capacity, improves satisfaction and end-of-life care while respecting patient autonomy. It usually results in the creation of a written advanced care directive (ACD). This systematic review examines the impact of ACP on several outcomes (including symptom management, quality of care and healthcare utilisation) in older adults (>65years) across all healthcare settings. Nine randomised controlled trials (RCTs) were identified by searches of the CINAHL, PubMed and Cochrane databases. A total of 3646 older adults were included (range 72-88 years). Seven studies were conducted with community dwellers and the other two RCTs were conducted in nursing homes. Most studies did not implement a standardised ACD, or measure the impact on quality of end-of-life care or on the death and dying experience. All studies had some risk of bias, with most scoring poorly on the Oxford Quality Scale. While ACP interventions are well received by older adults and generally have positive effects on outcomes, this review highlights the need for well-designed RCTs that examine the economic impact of ACP and its effect on quality of care in nursing homes and other sectors.

Evaluating the systematic implementation of the ‘Let Me Decide’ advance care planning programme in long term care through focus groups: staff perspectives

BackgroundThe ‘Let Me Decide’ Advance Care Planning (LMD-ACP) programme offers a structured approach to End-of-Life (EoL) care planning in long-term care for residents with and without capacity to complete an advance care directive/plan. The programme was implemented in three homes in the South of Ireland, with a view to improving quality of care at end of life. This paper will present an evaluation of the systematic implementation of the LMD-ACP programme in the homes.MethodsFocus groups were conducted with 15 Clinical Nurse Managers and two Directors of Nursing where the programme had been implemented. A semi-structured topic guide was used to direct questions that addressed implementation process, challenges implementing advance care planning, advantages/disadvantages and recommendations for the future. Data was analysed using manifest content analysis.ResultsFive key categories emerged, with 16 corresponding subcategories. These subcategories emerged as a result of 37 codes. Key benefits of the programme included enhancing communication, changing the care culture, promoting preference-based care and avoiding crisis decision making. Establishing capacity among residents and indecision were among the main challenges reported by staff.DiscussionA number of recommendations were proposed by participants and included multi-disciplinary team involvement, and a blended approach to education on the topic. According to participants relationships with residents deepened, there was a more open and honest environment with family, end of life care focused more on symptom management, comfort and addressing spiritual care needs as opposed to crisis decision making and family conflict.ConclusionThe introduction of the LMD-ACP programme enhanced the delivery of care in the long-term care sites and led to a more open and positive care environment.

Challenges in implementing an advance care planning programme in long-term care:

Background: A high prevalence of cognitive impairment and frailty complicates the feasibility of advance care planning in the long-term-care population. Research aim: To identify challenges in implementing the ‘Let Me Decide’ advance care planning programme in long-term-care. Research design: This feasibility study had two phases: (1) staff education on advance care planning and (2) structured advance care planning by staff with residents and families. Participants and research context: long-term-care residents in two nursing homes and one community hospital. Ethical considerations: The local research ethics committee granted ethical approval. Findings: Following implementation, over 50% of all residents had completed some form of end-of-life care plan. Of the 70 residents who died in the post-implementation period, 14% had no care plan, 10% (with capacity) completed an advance care directive and lacking such capacity, 76% had an end-of-life care plan completed for them by the medical team, following discussions with the resident (if able) and family. The considerable logistical challenge of releasing staff for training triggered development of an e-learning programme to facilitate training. Discussion: The challenges encountered were largely concerned with preserving resident’s autonomy, avoiding harm and suboptimal or crisis decision-making, and ensuring residents were treated fairly through optimisation of finite resources. Conclusions: Although it may be too late for many long-term-care residents to complete their own advance care directive, the ‘Let Me Decide’ programme includes a feasible and acceptable option for structured end-of-life care planning for residents with variable capacity to complete an advance care directive, involving discussion with the resident (to the extent they were able) and their family. While end-of-life care planning was time-consuming to deliver, nursing staff were willing to overcome this and take ownership of the programme, once the benefits in improved communication and enhanced peace of mind among all parties involved became apparent in practice.

Measuring staff perception of end-of-life experience of older adults in long-term care

BACKGROUND Quality of dying and death receive far less attention than quality of life. Measuring the quality of care at end-of-life (EOL) in long-term care (LTC) is essential, to ensure high standards. METHODS A questionnaire measuring staff perception of their patients end of life experience (SPELE) was developed. Content validity (CVI) was assessed by a panel of experts, and piloting was conducted with dyads of healthcare assistants (n=15) and nurses (n=15). RESULTS The SPELE captures facets of the quality of the death and dying experience from healthcare staffs perspective. Good group inter-rater reliability was observed among subscales. One exception was the pain and symptom experience scale. Kappa values showed little agreement between nurses and healthcare assistants for certain symptoms, including pain. CONCLUSION Further testing of the questionnaire is required. However it is described as a useful mechanism to enable researchers and clinicians to explore quality of care at EOL.

O-28 Evaluating the systematic implementation of the ‘let me decide’ programme in long term care: A user’s perspective

Background The ‘Let Me Decide’ Advance Care Planning programme (LMD-ACP) offers a structured approach to End- of- Life (EoL) care planning in long-term care for both residents with and without capacity to complete an advance care directive/plan. The programme was implemented into three homes in the South of Ireland. Aim To qualitatively evaluate the systematic implementation of the ‘Let Me Decide’ advance care directive and palliative care education programme in three long- term care sites Methods Focus groups were conducted with staff from the homes (n = 17). The sample consisted of 15 Clinical Nurse Managers and two Directors of Nursing. A semi-structured topic guide was used to direct the questions and these addressed the implementation process, challenges implementing advance care planning, advantages/disadvantages and recommendations for the future. Results Five key categories were presented, with 16 corresponding subcategories. These subcategories emerged as a result of 37 codes. Key benefits of the programme ranged from enhancing communication, changing the care culture, promoting preference-based care and avoiding crisis decision-making. Establishing capacity among residents and indecision were among the main challenges reported by staff. A number of recommendations were proposed by participants and included a multi-disciplinary team involvement, and a blended approach to education. Conclusion The LMD-ACP has transcended a number of care issues in the homes. Relationships with residents have deepened, a more open and honest environment with family was created, EOL care is now focused on symptom management, comfort and addressing spiritual care needs as opposed to crisis decision making and family conflict.