Background A young man with multiple complex and overlapping disability disorders presenting with cognitive decline was referred for advance care planning. ACP within group homes is increasingly being discussed and investigated yet the process of developing strategies to increase awareness and uptake of advance care planning for disability clients is less defined.
Aim To describe the processes undertaken to engage key stakeholders with ACP.
Methods A total of 16 h was spent over a 3 week period to facilitate completion of the advance care plan. Of this 7 h were spent with the family, the remaining 9 h were spent in meetings with key stakeholders and at the group home to support his carers. Communication, time and sensitivity were required for both the family and key stakeholders.
Results An ACP was completed. During this process significant learnings were identified in terms of the intense emotional connection some health care providers working in the disability sector hold along with the differing views of the multiple health professionals involved within this case.
Discussion This case identified that the disability health care providers are also effectively ‘family’ which was unexpected. The diagnostic uncertainty added to the duration of discussions. Areas identified as needing further clarification and discussion included defining slowly dying, ACP and how to enact and follow a plan.
Conclusion Defining strategies for ACP within this population requires further work. However we recommend allowing for an extended period of time to raise awareness, educate and most importantly develop trust and rapport with group homes and disability advocates.
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