Nurses with expertise in both heart failure and palliative care can play a key role in improving care for the many people dying of heart disease who are missing out on vital support in their final months, according to a new report.
The report, by charities Hospice UK and the British Heart Foundation in collaboration with the University of Hull, highlights the difference good palliative care can make to those with advanced heart failure.
”Patients [with heart failure] have less access to supportive care services, including specialist palliative care”
Hospice UK report
But it also shows few patients are being referred by GPs and hospital teams to specialist care provided by hospices and hospital palliative care teams, meaning vital support often comes “too late”.
Heart failure affects every aspect of life including physical and psychological wellbeing, finances, work and leisure, and can mean someone’s role in their family is “severely disrupted”, said the report, called Heart failure and hospice care: How to make a difference.
“Despite these issues, patients have less access to supportive care services, including specialist palliative care and these concerns are rarely addressed in the clinic by doctors and nurses,” it added.
However, the report goes on to show how teams in different parts of the country are successfully providing good all-round care for this group.
It calls on hospices and palliative care teams to lead a more integrated approach and actively forge links with healthcare professionals in cardiology, primary care and elderly care to support earlier referrals.
Where this is already happening it has led to better care planning and less time spent in hospital, according to the report, which says hospices and palliative care teams should be involved in planning services and the joint development of proposals and job roles.
“Clinicians are often reluctant to initiate conversations about limitations in treatment or future concerns, despite recognisable signs that the disease is getting worse”
Professor Miriam Johnson
The creation of joint heart failure/palliative clinical nurse specialist posts is also flagged up as a key factor for success.
The report features a number of examples of services in which specialist nurses play a key role.
St Christopher’s Hospice, which operates in London and South East England, appointed a heart failure palliative care nurse consultant in 2011 to develop a new model of care.
“Evaluation so far shows that patients and carers value a personal, flexible and skilled healthcare professional available ‘as needed’ rather than within a set review schedule,” said the report.
Meanwhile Saint Catherine’s Hospice in Scarborough launched an integrated heart failure and palliative care service in 2000, which includes a specialist liaison nurse.
“A palliative care nurse with a special interest in heart failure provides the liaison point in the hospice and the community heart failure nurses play a key role in coordinating and managing the patient’s care and support for the family,” said the report.
As a result of the close working between clinicians and sharing of expertise, heart failure nurses had become more confident in symptom control issues and in initiating advance care planning conversations including goals of care, resuscitation decisions, preferred place of care and death, said the report.
“Through this report we aim to encourage communication and collaboration between GPs, palliative care providers and hospices”
Professor Miriam Johnson
“In turn, they are able to offer support and advice to the palliative care teams on the use of diuretic therapy to manage fluid balance for example, subcutaneous furosemide to manage fluid overload at the end of life, and will also support conversations about switching off implantable cardioverter defibrillators.”
Professor Miriam Johnson, professor of palliative medicine at Hull York Medical School and director of the University of Hull’s new Wolfson Palliative Care Research Centre, led the work leading to the report’s findings.
She said that while palliative care for cancer patients was well established, equivalent services for people with heart failure were not.
“What this report highlights is that this does not have to be the case,” she said.
“Clinicians are often reluctant to initiate conversations about limitations in treatment or future concerns, despite recognisable signs that the disease is getting worse for fear of taking away hope when further deterioration is uncertain,” she added.
“Through this report we aim to encourage communication and collaboration between GPs, palliative care providers and hospices to ensure that heart failure patients and their families can access the care and support they want, need and deserve,” said Professor Johnson.