Given the choice, most people would prefer to die at home. Yet, according to the government’s end-of-life care strategy, published in July 2008, only about 18% do so. Most (58%) die in hospital.
Oxfordshire, however, is a different story. Here, a partnership project between the charity Sue Ryder Care and Community Health Oxfordshire, the provider arm of Oxfordshire Primary Care Trust, funded the role of community matron for supportive and palliative care in a three-year pilot from November 2006. The concept was a local response to some complaints from families who had not been able to access suitable care for people at the end of their lives. The role, filled by Liz Clements, proved so successful that the position was recently made permanent.
In line with the end-of-life care strategy, a key aim of the role is to enable people to die in a place of their choice. The two main ways of achieving this are by reducing inappropriate hospital admissions and speeding up discharge from hospital, to enable patients to die at home if they wish.
An evaluation of Clements’ role after 12 months, published in 2009 (see panel), found that these objectives were being met. Clements sees her role as having three strands: a clinical caseload, currently with 40 patients; a strategic role where she sits on several groups, including the Oxfordshire End of Life Group, to look at improving end-of-life care; and an educational role. The latter involves talking to staff in nursing homes, community hospitals and domiciliary care agencies about how to support people at the end of life, including how they should communicate with service users and their families.
Historically, palliative care is associated with cancer patients and, initially, they formed 60% of Clements’ caseload; 40% had non-cancer conditions, such as dementia, heart failure, renal failure, respiratory disease, motor neurone disease and Parkinson’s. Clements has worked hard to encourage referrals from those in the latter category and now her caseload is 50-50.
Referrals come from district nurses, GPs, community hospitals, the acute sector, social workers, the respiratory and cardiac teams and Oxfordshire’s three adult hospices.
“My role in their care depends on the situation,” says Clements. “If they are at home it may be about sorting out symptom management or looking at equipment that is needed there, or there may be a funding need that has to be dealt with. I’m hands-on and can change a catheter, prescribe medication, diagnose a chest infection and give injections.
“I’m a troubleshooter, I have to think ahead to look at what we need to have in place at home before we hit a crisis to prevent an inappropriate hospital admission.”
There are two main reasons why people end up in hospital, says Clements: poor symptom management, where symptoms develop, the individual is in pain and there is no medication in the house; and lack of support for the carer.
“If they are in hospital my role can be to facilitate the support needed so they can be discharged,” says Clements.
“I will often facilitate a case conference and attend it to push for an early discharge because someone wants to die at home.
“It is about what the patient wants, as long as it is safe and realistic.”
One of the most challenging situations she must deal with is when a patient lives alone and wants to die at home. “It can be done,” she says, “but if they are not self-funding it depends on whether we can get funding for a care package or a live-in care worker. If we can’t get either of these rapidly enough it results in an admission because it’s not safe for the patient to be at home.”
To address this need, Oxfordshire PCT has commissioned Allied Healthcare Group to provide a rapid intervention service for end of life care from this month across the county to provide six days’ support for patients who are in the final year of their life.
Oxfordshire PCT commissioners are also exploring the potential to expand the community matron service, a move that is bound to be welcomed by those who need palliative care. As one patient who Clements supported to stay at home with his wife says: “When we have been frantic with worry, a phone call to Liz has been all it takes to alleviate that worry. I really don’t know who we could turn to in an emergency if she wasn’t available.”
Matron’s first year: the benefits
An evaluation of the community matron’s first year jointly carried out by Sue Ryder Care and Community Health Oxfordshire revealed:
● 78 people on Clements’ caseload died. Of these, 51 identified where they wished to die and 49 achieved this. Six were unable to express a preference but all died where those closest to them believed they wished to be.
● An estimated £64,000 was saved: Clements provided 25 separate episodes of intensive support to prevent hospital admissions, equating to a saving of £41,000. There were 25 instances where Clements facilitated hospital discharge, saving £23,000.
This article is published in the 15 July issue of Community Care magazine under the heading Home comfort at end of life