Although the link between homelessness and health is widely recognised, our understanding of the experiences of homeless people dying on the streets, in hostels or in hospital remains poor.
End of life care in a sheltered housing scheme
For almost 20 years St Martins had been managing a 22-bed registered care home for the dual diagnosis group in a large and rambling 19th century, Grade II – listed house. An opportunity arose to lease, from Norwich City Council, a 33-apartment sheltered scheme which was deemed “no longer fit for purpose”. The scheme had been built in the 1960’s using the traditional “H-block” design.
St Martins invested almost £800,000 in an architect-designed scheme to modernise the building – including the outdated infrastructure (particularly heating and lighting). Helped in part by a grant from Norfolk County Council (who had been commissioning, via a block grant, the 22 beds in the Care Home and, like the Commission for Quality Care, were encouraging it’s de-registration) a 12-month period of refurbishment was embarked upon. Working alongside the main contractors, St Martins’ own maintenance team – including an ex-service user and an apprentice - worked to replace every kitchen and bathroom in the 33 one-bed apartments. This helped to cut costs. Webster Court opened in 2015. Many of the residents from the Care Home moved in and became tenants claiming Housing Benefit.
The scheme includes eight wheelchair-accessible apartments, equipped with assistive technology. These eight tenants all require personal care on a daily basis, due to their mobility constraints and end-of-life care needs.
Developing an approach to end-of-life care
One of the big hopes of the charity was that it could provide not only appropriate accommodation but also a carefully constructed support environment for tenants; one that provided a safety net but also promoted independence at every turn. Many of the tenants had been known to St Martins for a long time as former street sleepers and users of several of the charity’s services. St Martins’ staff wanted to do their best for them as they approached the end of their lives.
Not surprisingly the key to the end-of-life initiative was staff training. Working with their local Clinical Commissioning Group St Martins became accredited and registered for end-of-life care. Using the National Institute of Clinical Excellence guidelines and their six-step programme the staff set out to ensure tenants needing terminal care and support remained living in their apartments, with their belongings. This allowed them to be cared for by people they knew, rather than strangers, and generally have more control over the levels of support they needed. Contact with the palliative care team, district nurses and social workers are an important feature of the approach. Tenants are also registered under the Gold Standards Framework with their GP and this ensures that a supply of anticipatory drugs are in place before they are needed.
Anthony (not his real name) was 51 when he died at Webster Court. He had a history of chronic alcohol dependency, mental health issues and of homelessness. Following an unrelated hospital visit, he was diagnosed with Stage 4 cancer and given months to live.Treatment was discussed on a number of occasions but Anthony refused, wanting things to take their course. In his advanced care plan, he made it clear he wanted to stay at Webster Court and later expressed his refusal to go into hospital under any condition.
An Occupational Therapist provided a hospital bed in Anthony’s apartment and other aids. Palliative nurses and the GP were involved in planning his care.
Staff would check on him regularly. When his mobility declined Anthony still enjoyed socialising with his fellow tenants in his wheelchair. He enjoyed a day out to Great Yarmouth.
As Anthony’s health declined staff would visit his apartment more frequently, spend more time with him, ensure he had a supply of his favourite foods and nutritional shakes and give him bed baths when he was unable to get up. If he wanted to be left alone for long periods, staff would give him that choice and find other ways to check up on him without disturbing him. Visiting nurses evaluated Anthony’s pain levels on a regular basis.
Before Anthony died he discussed his funeral plan with staff and he arranged for money to be set aside for a wake (a barbeque) for the other tenants. This came about and all tenants at Webster Court attended.
Anthony’s quality of life was greatly improved in the final weeks of his life as a result of the work of St Martins’ staff and the health professionals they worked alongside.
Getting end-of-life care right
Staff training and partnership working with supportive health professionals is the key to providing a high standard of end-of-life care for people. We have one chance to get end-of-life care right. The decisions, clinical and non-clinical, that need to be taken about the care of someone with a terminal illness should be driven by the needs of the individual for privacy, respect and dignity. Webster Court demonstrates that these values can be reflected in the terminal care and support provided for people who have experienced homelessness and have often led chaotic lives in what is essentially a sheltered housing environment.
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General Manager of St Martins
Derek Player, General Manager of St Martins since 2004 has worked in local and central government, the third sector and housing associations in his 40 year career.
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