Dying is a part of everyday life but many people struggle to talk about it. Facing death is even more daunting for people who are estranged from family or have no-one to care for them. In 2014 Footprints undertook a project looking at improving end of life care for marginalized clients who are socially or financially vulnerable and may be at risk of homelessness. Driven by Footprints staff who identified that the experience at end of life was less than optimal for clients, a project was undertaken in 2014 to explore ways to improve end of life care for clients.
Phase one of the project had already prepared the way by raising awareness, identifying local Palliative Care Services and improving linkages. Phase two involved case management and support of clients in the palliative phase of life, the provision of education to help staff to recognize clients who may be needing palliative care, and promotion and assistance with the completion of Advance Health Directives and Care Planning.
Limited research available from studies in the USA identified that clients who are homeless or at risk of homelessness have very unique fears around the end of life, such as not being found after they had died, who would care for pets or look after often very limited possessions.
Many clients also have fractured relationships and may have no next of kin at all. However it was identified that they are often keen to engage in talking about future plans and should have the same opportunity as everyone else to address end of life issues.
Experience during the project revealed that barriers often come from professionals rather than clients themselves and the perception that talking about end of life issues would upset the client was more a staff problem than one that concerned the client. This can only be addressed over time with education and support for staff as they start to recognize the importance to the client of planning around end of life care.
Practical issues around end of life care planning, such as difficulty printing and storing documents like Advance Health Directive were unique with this client group. Some clients don’t have a safe place to store documents and some may share a fridge if they live in supported accommodation which can cause difficulties as ambulance personnel are trained to look on the front of the fridge for health related documents.
Housing managers often felt unable to deal with people who had deteriorating health needs and were keen to get them rehoused, in one case threatening to make the person homeless because they were sick. However finding alternative accommodation especially so close to the end of life is not always appropriate or possible.
It is our belief that with the right community support not only for the client but also for staff that someone can be cared for until they die in their home if they wish. Caring for clients in this group requires an individual and flexible approach. Barriers such as a sub-standard living environment, difficulty keeping in contact with clients, issues around medication safety and barriers to purchasing medication, dressings and equipment were common. This does not detract from the reality that they deserve the best ending to their life possible and their hopes, dreams and fears are similar but as unique as everyone else’s.
Advance Care Planning needs to become much easier for this client group. Issues such as printing, copying, storing and carrying the documents are problematic. Wallet sized cards indicating someone’s health preferences and decisions have been trialed in other countries and making decisions and wishes easier to record and carry would go a long way to ensuring this group receive the care they desire and deserve at the end of life.
A full-time Nursing Care Coordinator has been appointed to ensure the sustainability of improved end of life outcomes, by continuing to support staff to recognize and respond to deteriorating health needs of clients in a robust and sustainable way by providing educational resources, policies and procedures and clear referral pathways to other providers.
Linkages with health care providers continue to be strengthened through this work to ensure clients are cared for in a way that is meaningful and appropriate for them at the end of life. We work very closely with providers who do not have experience in dealing with clients with this complexity of health and environmental issues to ensure a successful outcome for staff and clients.
Footprints continually explores innovative ways to look at issues affecting clients. One of the next initiatives planned is a Death Café to enable clients to talk about death and dying in an informal and friendly environment over coffee and cake. A focus group meets to continually look at ways to assist clients to record end of life plans in ways that are meaningful and accessible for them.
A lady referred into the project was at risk of being evicted by the boarding house manager due to her deteriorating health following diagnosis of lung cancer. Footprints assisted her to remain in her own home by working closely with a palliative care provider, providing practical support, equipment and education to the boarding house manager. This allowed the lady to achieve her wish to die at home and receive the care she needed in an environment that would have struggled to cope without significant i