The final report of the Commission into the Future of Hospice Care in 2013 helped to identify the need for hospices to expand their reach to people with long-term or chronic conditions from different groups across their communities who are in need of end of life care.
The ‘Silent Communities’ session at Hospice UK’s 2016 Annual Conference identified three of these groups and suggested how hospices can help to support them.
The session began with a powerful talk from Dr Caroline Shulman, General Practitioner in Homeless and Inclusion Health at Kings Health Partnership. Her presentation outlined the results of a qualitative study conducted by the partnership which clearly demonstrated that the increasing number of homeless people is placing a significant strain on hostels across the country, where the average age of death is 47 for men and 43 for women. With around half of these deaths attributed to organ failure, it’s clear that the homeless community needs significantly more support than they can currently access.
Due in part to the complex intersecting needs of homeless people, which can include requirements for mental health care, emergency housing, and addiction treatment, social services are often unwilling or unable to take ownership of complex care needs. With nowhere else to go, critically ill residents are dependent on hostel staff who do not have the training or support required to deliver high quality end of life care.
The study identified that, despite these issues, hostels are best-placed to provide specialised, high-level support for homeless people approaching the end of their lives, and that hospices should look to support this as much as possible by facilitating training and sharing expertise. A Complex Innovative Solutions forum was recommended as a place where practitioners could come together to share best practice and support each other to deal with complex cases.
The session continued with a talk from Vicky Lindsay, Senior Practitioner at Aquarius Action Projects highlighting the needs of those living with and dying of alcohol-related liver disease (ARLD). Liver disease is the fifth leading cause of death in the UK, and the only one of the top five ‘killers’ where mortality rates are rising. Aquarius identified that support is currently not meeting the growing demand for specialised care in both hospices and hospitals, with consultants lacking training in palliative care and hospices lacking experience in caring for people with liver disease.
In response to this growing need, Aquarius developed a new ‘Befriending Care Service’, which trained volunteers to provide high quality care, including home visits; emotional, peer and practical support; signposting to services; and bereavement support for family and friends.
As a result, patients were found to be better able to manage their disease, as the support they received made them more likely to attend medical appointments and secure appropriate housing, but also reduced isolation and crisis incidence. Friends and family also benefited from an increased understanding of the nature of ARLD and addiction in general, which facilitated a stronger network for the patient.
Based on these successes, Lindsay argued that a holistic response to the needs of ARLD patients is required to guarantee high quality care. The project filled the knowledge gaps that currently exist due to a lack of honest communication between GPs, hospital staff, hospice staff and family which meant that difficult conversations about palliative care were not being had. It also suggested the potential for more integration and training that could provide targeted palliative care to key groups.
The final talk was given by Dr Morag Farquhar, Senior Research Associate and NIHR Career Development Fellow at the University of Cambridge. Chronic Obstructive Pulmonary Disease (COPD) is the fourth leading cause of mortality worldwide, and is predicted to rise to third by 2020. It is estimated that this disease affects more than three million people in the UK, with a resulting death every 20 minutes.
The disease is characterised by a slow decline in quality of life, punctuated with brief periods of partial recovery. This means patients are living in-between conventional disease management and end of life care, which can place a considerable burden not only on patients, but carers and care professionals in different systems as well.
In her mixed methods study, Farquhar identified a need to understand how the mental health needs of patients and carers change as the illness progresses and suggested how care could be tailored to meet these needs. The study made six inter-related recommendations to improve every day practice. Overall, these recommendations work to enable person-centred care within existing services by using evidence-based approaches to identify and respond to the needs of both patients and carers.
The study recommended the implementation of a new tool modelled on the Carer Support Needs Assessment Tool (CSNAT): Support Needs Approach for Patients (SNAP). SNAP address the difficulty patients have in identifying needs and allows for a personalised care plan to be developed with the patient’s input. It also identified that CSNAT needs to be used more widely and consistently in hospices in order to better support carers, and identify any further support needs.
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