Patients', caregivers' and clinicians' understandings of an advance care planning process: the example of ambulance palliative care plans.

BACKGROUND: With the introduction of New South Wales Ambulance Authorised Palliative Care Plans within a metropolitan palliative care service, the perspectives of patients, caregivers and clinicians and their understandings of the processes involved in completing the Plans were investigated. METHODS: This qualitative sub-study used semi-structured interviews. Nineteen patients and caregivers who had received an Ambulance Palliative Care Plan and 10 clinicians who completed the Plans were interviewed (n=4) or participated in a focus group (n=6). Grounded theory provided theoretical and procedural direction. Thematic content analysis utilized the constant comparative method. RESULTS: Thematic analysis of patient/caregiver interviews revealed four major themes (I) a lack of involvement in signing the Plan; (II) a need for clear communication about the Plan; (III) trust in the handing over of difficult decisions to family; and (IV) control over where to receive end of life care. Patients indicated that they had little understanding or memory of what the document was or of its purpose, and there were some significant caregiver anxieties about the Plans. Those who were clear on the rationale for the Ambulance Palliative Care Plan demonstrated more prognostic awareness about their condition and the benefits or burdens of resuscitation and treatment. Clinicians identified the main benefit as avoidance of Emergency Department (ED) admission and for patients to be able to choose their preferred place of death. Barriers were mainly systemic and included a lack of clarity around the signature processes and the early implementation of the Plan where the palliative care service was new to patients and families. CONCLUSIONS: The Ambulance Palliative Care Plans are a complex intervention that are sometimes misunderstood by patients, particularly those who are very unwell or who have little prognostic awareness. Clinicians perceive the major benefit to be avoidance of admission to the emergency department.

Attendance of men at the familial cancer clinic: what they value from the consultation.

PURPOSE: This study examined what men from high-risk breast/ovarian cancer families valued from attending a familial cancer clinic. METHODS: One hundred men from families with a BRCA1 or BRCA2 mutation completed a self-administered questionnaire. RESULTS: Seventy- two percent (72%) of men attended the familial cancer clinic at the request of a family member. Multivariate analyses showed that men with a preference for a collaborative decision-making style (B = -4.651, 95% CI = -9.014 to -0.289, P = 0.04), those with lower levels of education (B = -4.850, 95% CI = -9.16 to -0.537, P = 0.03), and those with higher levels of cancer-related anxiety (intrusion) (B = 0.920, 95% CI = 0.441-1.399, P < 0.001) were more likely to value emotional support from the clinic. Men with a collaborative decision-making style (B = -2.68, 95% CI = -4.91 to -0.467, P = 0.02) were less likely, and those with higher total levels of cancer-related anxiety (intrusion and avoidance) (B = 0.393, 95% CI = 0.008-0.779, P = 0.04) were more likely to value receiving information from the clinic. CONCLUSIONS: A preference for collaborative decision making and cancer-related anxiety predicted men valuing information and emotional support from the consultation. The finding that men's attendance is initiated by family members highlights the value men place on family responsibility.