Background
Methods
Research design, setting and participants
Recruitment and data collection
Data analysis
Ethics
Results
People with schizophrenia at the end of life: challenges of a vulnerable group
Individual factors that may affect people with schizophrenia at the end of life
There are shared challenges around decision making and the ability to weigh up complex information, provide informed consent to different sorts of treatments…they may have challenges with self-care...and little insight about their needs to live safely at home, and so that just gets exacerbated when you have someone who also has a substantial physical illness and who’s transitioning to an end of life phase of that illness, because often people desperately want to stay at home.
Social factors that may affect people with schizophrenia at the end of life
Our residents with schizophrenia have a very, very colourful inner-life which expresses itself in behaviours which I guess would be difficult for the general public or the general community to understand, accept or deal with.
You have to take into consideration that because of their life long conditions, their view of the world, their need for support and a familiar environment could be quite different from somebody who has their cognitive facilities and who has a really strong social support network…they’ve got quite fractured social networks and sometimes the families that are hanging in there may or may not be advantageous to the client at times (mental health nurse).
Health care factors that may affect people with schizophrenia at the end of life
One of the big issues will be the service provider’s understanding of what’s going on for that person. If there is not an effective understanding…it may lead to decisions being made that are inappropriate...a person may be judged on their behaviour at a particular point in time which could lead to a range of consequences around whether a service is provided or not. So if a provider was to front up to the person who was very aggressive that will of course lead to a whole range of requirements in terms of how that’s managed (social worker, support manager in a community-based palliative care service).
We’re seeing some dying in hospital because no-one else knows where to put them. A hospice might see schizophrenia and think “hmm a bit hard to manage in the hospice environment”… have to be in a hospital where they potentially might need a guard…if they come from the (name) Mental Health Hospital…they’re prison sentences there, so they’re dying in custody. They’ll all automatically be sent to hospital to die because they’re death in custody so they’re potentially not even thinking about a hospice situation (palliative care clinical nurse consultant).
They have fallen between the cracks for the different funding programs so again it’s not been through, I guess, a lack of willingness or preparedness on the part of service providers but quite often it’s then finding the right sources of funding to be able to meet their needs.
The interrelationship between factors that affect people with schizophrenia at the end of life
Barriers and facilitators to people with schizophrenia receiving palliative care
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 |
Recognising declining health, communication and planning
Our residents are reviewed by the GP to confirm any declining health issues or their health status…so whether it’s loss of appetite or weight loss or just through the medical investigation that might warrant a palliative care approach. That is then communicated with a multi-disciplinary team and in particular our palliative care link team which we have formulated and this is to inform everyone, make sure everyone’s on the same page and therefore we would tailor their individual palliative care approach, their needs and preferences (occupational therapist working in mental health and aged care).
The people that know them can advocate on their behalf as long as we try and move away from that labelling principle…you need a really well documented support plan of how to approach the person…what are their usual routines, what sort of indicators, what’s their normal behaviour like so that you can judge what they’re doing or not…it’s very much about identifying what are the goals of care…what are the person’s key goals and so negotiating a lot of that right up front so not waiting for the moment when something really goes awry and then you don’t have a contingency plan (mental health nurse).
Collaboration and capacity building in the broader health, mental health and palliative care sectors
I think any supported residential environment throws up a whole range of specific issues because then there’s already a pre-existing workforce with its own organisation so that needs to be understood and there really does need to be a shared understanding about who’s doing what and why…so that does bring up a whole range of practical issues just in terms of gaining access, documentation, all of that sort of thing, so that needs to be an open transparent shared care situation (palliative care social worker).
There’s a lot of issues I think around how well equipped health professionals generally are to work with people with a range of mental health issues in a community setting and often health teams are not necessarily the best equipped. So sometimes within a palliative care setting essentially you’ve got a group of health professionals whose expertise is working with end of life issues, complex palliative care issues but that may not automatically translate into being able to work effectively with people with mental health issues (palliative care consultant nurse).
Doing that multi service really integrated care, and there’s no reason why you couldn’t do this in the same way. So if it was a client with schizophrenia that they actually had their dedicated mental health worker as part of that team, so they work collaboratively with the community palliative care service, and their kind of health worker, maybe their GP and family, so again you’ve got this really nice partnership model. It’s not that hard but it’s different and I think this is where lots of services struggle…It’s easy you just have to think differently (palliative care nurse).