A recent study provides valuable insights into the crucial role of staff in providing high-quality palliative care to people with dementia in aged care homes.
The study published in Frontiers in Psychiatry, titled "Staff perspectives on end-of-life care for people living with dementia in residential aged care homes: a qualitative study," examines staff views on providing high quality care for people with dementia living in aged care homes nearing end of life.
In Australia over 50 per cent of people living in aged care have a diagnosis of dementia, yet despite the known benefits, access to palliative care services varies across the sector, particularly for residents living with dementia.
Although a person with dementia will have a higher quality death in an aged care home, due to a lack of specialised training and clinical support for staff, literature suggests a person with dementia in the last stages of life will often be transferred to hospital. These care environments are proven to be more distressing and disorientating for residents living with dementia.
“This study sought to hear from care home staff about their experiences and perspectives of providing palliative and end-of-life care to residents living with dementia. The staff voices are so important, as we can listen to what works well for them and learn how to reshape difficulties into opportunities to improve practice in the future,” explains Madeleine Juhrmann, first author of the study.
The study involved 56 participants across 14 care homes in two states. The participants included care workers, nurses, care home managers, volunteers and pastoral care coordinators who care for people living with dementia.
Findings from the study include:
The importance of person-centred care: Staff emphasised knowing the person's preferences, tailoring care approaches to individual needs, and involving family members in decision-making processes.
“Not everyone who walks into that room will have a relationship with the resident who’s dying, so sometimes staff might need a little cheat sheet” (Pastoral Care Worker 30).
Support and education for staff: The study highlights the need for enhanced support and education for staff members. Recommendations include specialised training on dementia-specific palliative and end-of-life care, staff peer support programs and fostering a supportive work environment.
“Staff need training if the resident refuses showering for two, three days or four days, that's fine - let them refuse. At least, it can make a peaceful environment for that resident at end-of-life” (Care Worker 43).
The value of a multidisciplinary approach: Combining the interpersonal skills of care workers, volunteers, and pastoral care workers with the clinical expertise of nurses and general practitioners was highlighted as an optimal approach to end-of-life care.
“Getting towards the end stage, it's about having the general practitioner responsive at that point, coming in and making sure that we're all on the right page and what we're seeing is correct and then supporting that for us, being available to talk to the family, if they wish, but also being prepared to provide us with the scripts for sub-cut morphine and things like that if needed” (Operations Manager 55).
Involving families in shared decision making: The study recommended providing families with information and emotional support, proactive approaches to advance care planning, and timely engagement to ensure person-centred care at the end of life.
“We encourage families not to give up at end-of-life, but to continue to sit with their loved one and to affirm them, and to say what they need to say. It helps families, and I believe it helps the resident too, to form closure” (Pastoral Care Worker 46).
Strategies for future care at end of life
To build on the findings of this study, the paper also outlines strategies targeting areas of improvement of family education and participation, advance care planning, staff experience and education, as well as clinical approaches to care.
The suggested strategies to address these areas include gently promoting family awareness and acceptance, providing carer support sessions, making advance care planning a national requirement, mandating essential palliative care training for staff and volunteers, enabling involvement in cultural rituals related to residents' dying, ensuring adequate clinical back-up support, and rostering regular staffing patterns.
The study’s findings can help inform policy and practice in aged care homes, and promote more person-centred care that is responsive to the needs and wishes of residents and their families.
Toolkit helps aged care teams start conversations.
The Advance Project, led by HammondCare and funded by the Australian Government, provides free, practical, resources and training that empower aged and primary care professionals to initiate advance care planning and palliative care conversations. The suite of resources and training support a team-based approach to initiating advance care planning (ACP) and palliative care into everyday care provision in aged care.
Results from the Advance Project "Enabling advance care planning and palliative care for people living with dementia" will be presented at the Oceanic Palliative Care Conference 2023.
