The effect of simultaneous implementation of an advance care planning program and a palliative care initiative on end of life care in long term care

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McGlade, Ciara
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University College Cork
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Introduction: International research suggests care at the end of life in long term care is suboptimal, but quality improvement initiatives incorporating advance care planning have shown promising results. Little is known about the care given at this time of life, in this environment, in Ireland, where advance care directives are not yet part of the Irish culture. The objectives of this thesis were to examine the effect of implementation of as advance care planning program combined with a palliative care educational initiative on end of life care in the long term care setting in Ireland. Methods: A study was carried out to examine healthcare professionals’ attitudes and knowledge of advance care directive, end of life care and decision making for older adults with diminished decision making capacity in Ireland, Canada and the United Kingdom. The baseline educational needs of Irish nursing home staff was explored and the data used to create a palliative care educational initiative tailored to the needs of staff. An existing advance care planning program (Let Me Decide) was modified for use in an Irish long term care setting. The effect of systematically implementing both these programs simultaneously on end of life care was examined through a before and after feasibility study. Results: Attitudes to and knowledge of advance care directives was good amongst healthcare professionals in Ireland compared with the UK and Canada, but knowledge of the legal situation for medical decision making for a person with diminished capacity was lacking, as was knowledge of the successful outcome for cardiopulmonary resuscitation. End of life care education was suboptimal but improved subsequent to the study program initiation. The challenges faced in advance care planning and implementing an associated educational program found lack of time and staff pressures to be key factors. The program resulted in a substantial rise in the proportion of decedents with a plan for end of life care and a marked shift in the timing of care conversations from the last weeks and days of life, to a median time almost 6 months before death. The proportion of long term care residents included in care planning decisions improved from 5.5% to 27%. Bereaved relatives commended the end of life care received by their loved ones, they rated the quality of their loved ones dying experience highly and highlights practices of good end of life care that could be disseminated elsewhere. In addition the prescribing practices in the last 3 months of life were examined. Though there was evidence of deprescribing in over half of decedents this tended to only happen close to death, when anticipatory prescribing for end of life symptoms also took place, albeit to a greater extent in the after period of the study. The study findings were sustained when re-examined in 2017. Conclusions: Advance care planning with residents (or their family) was not part of the culture of end of life care in Ireland, and decisions on resuscitation or hospitalisation tended to occur with family when imminent death of nursing home residents was recognised. The advance care planning program introduced in this project was acceptable, feasibility and its impact sustainable in the longer term. Palliative care training was suboptimal in long term care in Ireland but staff were keen to engage with education and the study initiative improved the prevalence of trained staff in the study sites. Additionally, the end of life care provided in nursing homes in Ireland is rated highly by bereaved relatives.
End of life care , Palliative care , Long term care , Advance care planning
McGlade, C. 2018. The effect of simultaneous implementation of an advance care planning program and a palliative care initiative on end of life care in long term care. PhD Thesis, University College Cork.