Background Advance care planning (ACP) is a process and encourages individuals to have timely conversations regarding their future care needs with those they wish to have involved. Such discussions and planning require a whole ‘community’ approach – family, health, and social care - with the overall aim of improving the individuals’ quality of life and ensuring that their wishes are known.
Unfortunately, discussions around a young adult’s (YA) deteriorating health, their wishes, their preferences around escalation of treatment, their preferred place of care and preferred place of death rarely happen in practice as they are thought to be difficult to have or not appropriate during times of wellness.
Aims To access the documentation of ACP documents within electronic case notes at the hospice, and the completion of the ACP summary held on the regional health board clinical portal.
Objective To ensure that the YA’s ACP, specifically their wishes and preferences, is completed and communicates effectively between their health care givers.
Results Despite developing solid therapeutic relationships with the YAs and their families on the caseload at PPWH, and often discussing worries about the future, ACP documentation is not consistently captured within the hospice; the shared clinical ACP on clinical portal is not being completed, and Key Information Summaries (KIS) are incomplete and out of date.
Discussion There is a lack of patient-centred end of life and ACP discussion and little evidence of effective sharing of information for this population: this is concerning in a group of YAs who are clinically exceptionally vulnerable and at risk of sudden deterioration. These discussions are best had throughout the individual’s journey from diagnosis, incorporating regular, honest, and open communication initiated by those involved in the YA’s care, allowing them to be documented and communicated quickly and succinctly to ensure if something does change quickly, the YA’s wishes are known, respected, and heard.
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