Why detail matters for end of life care
End of life care is an important and often difficult time for patients, their families and professional carers. Clinical teams have to pay attention to the wishes of the patient and their families. Until recently, dying at home was thought to be medically difficult to support and the prerogative of just the few who could create the right support networks to help them. End of life care in a patient’s own home was variable and provision inadequate, particularly at night and at weekends.
Now expectations have changed. As patients, families, carers and the medical and nursing professions discuss end of life care plans more openly, we are coming to realise just how much the last few weeks, days and hours of a person’s life matter. If we get the details right, the death is likely to be a relatively peaceful and reassuring moment for patients and families and an event that puts the relatives’ minds at rest for years to come, while they live through the grief of their loss. We get those same details wrong, then families and the carers can suffer feelings of distress and guilt for many years afterwards.
Many deaths are not about dramatic efforts to save the patient’s life; the hustle and bustle of a hospital is usually not the best place to be, but patients and their families do need round the clock night and day care and support if they are to die in their own homes, as most now wish.
Hospices provide care for patients with ‘specialist palliative care needs’, that is patients who need significant support from a multi-disciplinary team that includes consultants, specialist palliative care nurses, physiotherapists and chaplains among others. Hospices are not cheap to run, hence the fundraising that goes on in the community to complement the contribution from the NHS.
It would not be practicable for hospices to take in all end of life care patients; in fact, the majority of people in Britain, when asked where they would prefer to die, would say that their ‘preferred place of death’ would be their own home (or care home if this has become their home). However this is based on the assumption that there will be sufficient quantity and quality of professional support for them at home. During the day, this is usually not too much of a problem, but in the long hours of night, families often find that there is very little care available for them in the home.
To respond to this need and to reduce the number of emergency admissions to hospital, some hospices run ‘hospice at home’ services. The services vary and are often largely dependent on charitable funding. The Arthur Rank Hospice Charity provides a Hospice at Home service across Cambridgeshire. Until recently this was entirely funded by the Charity; more recently, the Cambridgeshire and Peterborough Clinical Commissioning Group have provided additional funding and is considering future NHS investment.
The Hospice at Home service provides registered nurses or health care assistants to care for the patients overnight (10pm to 7am) in their own homes. A mobile senior palliative care nurse is on duty all night to give additional support to the staff and to deal with urgent requests for support from GPs and Community Nurses. Over the past two years the Hospice at Home service has expanded from just two nurses to six, with an additional two bank nurses, fourteen health care assistants and a complementary therapist. The Hospice at Home service now cares for about 40 patients a month, enabling them to die in their own homes. From September 2012 to August 2013 the episodes of care provided to these patients was more than doubled from just over 60 to nearly 180 each month. This is a tremendous achievement and there are plans to continue increasing the service in 2014 and beyond.
A new survey recently conducted for the Hospice by the NIHR CLAHRC (National Institute for Health Research Collaborations for Leadership in Applied Health Research and Care) for Cambridgeshire and Peterborough a collaboration between Cambridge and Peterborough NHS Foundation Trust and the University of Cambridge in partnership with other regional health and social care providers, has found that the Arthur Rank Hospice at Home service enabled 96 per cent of patients to die in their own home, in accordance with their wishes.
The “Capturing the essence of Hospice at Home” survey shows that the Arthur Rank Hospice at Home service is providing a dynamic out of hours service that is providing invaluable support for patients, carers and health care professionals. This evaluation of the service was carried out by the End of Life Care Research Group at the University of Cambridge in collaboration with hospice staff.
Every day the service provides practical and psychological support for patients and their families, as well as specialist symptom control. The service also gives much needed specialist advice to health care professionals, co-ordinates care provision and delivers hands on nursing care, especially overnight.
The evaluation showed that:
• 45 per cent of patients were referred from the community, 35 per cent from within the Hospice, and 20 per cent from hospital.
• The majority of patients died within a week of referral and 13 per cent were referred more than a month before death.
• The three most frequent reasons for referral were psychological support for the patient, psychological support for the family, and symptom control.
Of the 295 cases reviewed for the evaluation, 227 had said they wanted to die at home, 29 had wanted to die in the Hospice or at home, and 24 had said they preferred the Hospice. Data was unavailable for 20 patients. The service help to enable 96 per cent (263) of patients to die where they wanted to.
The service evaluation was based on information from case notes and interviews with bereaved carers, Hospice at Home staff, referring GPs and District Nurses and others. The comments made by patients, carers and others were at times very moving. When interviewed many family members spoke of the relief when overnight help came to them from the Hospice at Home service, cherishing the reassuring professional presence which allowed them to get what may have been the first unbroken sleep they had had in weeks. They appreciated the responsiveness of the service, as well as the caring nature of the staff, as one man highlighted when he said ’you sort of almost feel like she’s part of the family ‘cos she’s doing so much’. The service seeks to meet the wishes of all the family members, in all respects.
The “Capturing the essence of Hospice at Home” launch was held on 29th January 2014 at The Institute of Public Health, University of Cambridge School of Clinical Medicine, this put into the public domain the urgent need to support the expansion of the Hospice at Home service into the community so that dying patients and their families can be supported to stay at home until the end, having their last wish fulfilled.
• The Evaluation Team was led by Dr Stephen Barclay, University Lecturer in General Practice and Palliative Care, General Practitioner and Honorary Consultant Physician in Palliative Medicine. The evaluators were Dr Jackie Buck and Margaret Lay of the University of Cambridge.
• The evaluation study was funded by the NIHR CLAHRC (National Institute for Health Research, Collaborations for Leadership in Applied Health Research and Care) for Cambridgeshire and Peterborough, with additional support from the Arthur Rank House Charity.
• The evaluation team included, Dr Stephen Barclay, Dr Jackie Buck, Maggie Lay, Katie York, Andrea Newman and Andy Cowan from the University of Cambridge; Dr Lynn Morgan from the Arthur Rank House Charity; Clare Kitchener, Lorraine Moth, and Liz Webb from the Arthur Rank Hospice (Cambridgeshire Community Services NHS Trust).
• The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
• The Arthur Rank Hospice Charity provides a Hospice at Home service across Cambridgeshire. The service was entirely funded by the Charity until recently but now has support from the Cambridgeshire and Peterborough Clinical Commissioning Group.
• The Hospice at Home service provides registered nurses or health care assistants to care for the patients overnight (10pm to 7am) in their own homes. A mobile senior specialist palliative care nurse is on duty all night to add additional support to the staff or to deal with urgent requests for support from GPs and Community Nurses.
• The Arthur Rank Hospice Charity is planning to build a new hospice with double the number of beds (24 instead of the current 12).
• More funding is needed to support both in house hospice services, its expansion and care out in the community. Go to www.arhc.org.uk to find out how you can support the Hospice.
For more information, contact: Dr Lynn Morgan, Chief Executive, Arthur Rank Hospice Charity, Cambridge CB1 3DF. Email: Lynn.Morgan@arhc.org or 01223 247522