Table 1 Barriers, facilitators and outcomes associated with palliative care for people with schizophrenia
Elements required for palliative care | Barriers | Facilitators | Outcomes |
|---|---|---|---|
Person-centred, individualised care | Problems with information processing and communication Possible cognitive impairment (particularly when paired with mobility) Significant comorbidities Possible lack of insight | Ensure sufficient time to discuss end of life issues Provide adequate symptom assessment and management Provide sympathetic support | Symptoms controlled Anxiety reduced Comfort ensured Level of autonomy encouraged |
Identifiable carers | No identifiable carers in the home environment (eg. sharehouses, living alone, homeless) Previous family disruption | Identify or nominate carers (institutional or community agency care staff may be defacto family) Public advocates if needed | Patient supported |
Health workforce prepared | Lack of experience Ill-informed assumptions about schizophrenia Lack of adequate educational resources | Ensure adequate training and exposure | Reduction in ignorance and anxiety |
Appropriate place of care | Assumptions that the patient will be unmanageable Paperwork seen as a deterrent, especially for short term residence | Identify and update databases of appropriate and willing agencies if transition is required Ensure place is appropriate for the age and individual needs of the patient | Patient supported in a safe and familiar place |
Early referral | Delays in patient seeking care because of pain-perceptive and pain-processing abnormalities. Patient or family resistant to presenting to services Health professionals not identifying symptoms and referring appropriately Services not designed to facilitate early referral (ie. response time slow, bureaucratic approaches) | Enlist mental health liaisons and advocates where they are available Educate General Practitioners Coordinate medical and psychiatric systems of care | Adequate symptom control Better end of life preparation Development of trust between patient and team and between services |
Continuity of care | Lack of resources to keep patients in a palliative care service when their physical symptoms may appear temporarily controlled | Ensure good medical care Identify advocates Support staff to keep patient in a familiar environment | Holistic care provided Symptoms controlled Familiarity and comfort |
Safe supportive place to die | Not dying in a place of choice Lack of identifiable home Inability of institutional or community care staff to provide adequate care Lack of sufficient resources | Support staff to keep patient in a familiar environment Create a home like environment when transitions are required | Familiarity and comfort A good death |
Multidisciplinary team | Not all members of the team readily available, with sporadic involvement | Establish regular case conferencing Identify lead or team member responsible | Holistic care provided |
Collaboration with other health care and/or community services | Resistance to shared ways of working | Establish case conferencing Include mental health case workers or General Practitioners in the palliative care team Share lead roles between palliative care and mental health workers depending on the patients’ symptoms | Partnership models established Strong involvement of all stakeholders Better quality of care Greater cost efficiency |
Family conferencing (when appropriate) | Previous family disruption Lack of prior possible mediation or counselling to prepare | Ensure robust preparation, (eg. questionnaire to identify what should be included or avoided) | Patients and families supported Problems explained and anticipated Families empowered |
Risk management | Services and staff unprepared Lack of policies or guidelines Fear and ignorance of staff | Make sure staff are sufficiently trained to recognize when the safety of the patient or other residents may be compromised | Creation of a safe place of care |
End of life wishes/ advanced directives | Lack of a family member, identifiable carer or advocate | Identify an advocate (public or otherwise) Ensure continuity of care | A dignified death |
Bereavement support | Difficulty in identifying those most affected Previous family disruption Lack of understanding of the grief of others in institutional or community settings | Establish inclusive funerals and memorials Provide support for informal and health professional carers | Families and care staff supported |
Capacity building | Lack of communication between teams Lack of resources | Ensure the palliative care team do not ‘take over’ but build capacity within the pre-existing care team | Care staff supported Opportunities for ongoing education |