The six-week pilot programme, the first of its kind in the UK, run by Keech Hospice Care and Luton & Dunstable Hospital, aims to show that patients with chronic lung disease can have better outcomes when their care is provided by specialist teams across the whole of their disease trajectory.
Prognosis/morbidity of severe COPD is comparable to that of lung cancer; however, as the annual MDS report from The National Council for Palliative Care shows, referral to specialist palliative care is much less common for patient with COPD than those with cancer.
A report on Deaths from respiratory disease from the National End of Life Care Intelligence Network also highlights the high proportion of deaths from chronic lung disease which occur in hospital and the low numbers that occur in hospice and in the home. It recommends that end of life care should to be considered within the broader spectrum of overall care for individuals living with respiratory diseases and that hospice service provision for non-malignant respiratory disease should be considered further.
One of the objectives of the Outcomes strategy for COPD and asthma in England is to enhance quality of life for people with COPD, across all social groups, with a positive, enabling, experience of care and support right through to the end of life.
Lisa Hayes, clinical development lead at the hospice, explains: “As the condition worsens and the disease severity advances, patients require palliative care as well as ongoing disease management. Many barriers exist, preventing patients with chronic lung disease being referred or accepting referral to palliative care services. As part of the work to improve care for patients with chronic diseases, the Luton & Dunstable Hospital Respiratory team have been working in partnership with Keech in order to bridge the gap.”
A non-malignant multidisciplinary group has been set up, and the group meets regularly to discuss and address complex patient issues. Patients are offered placement at the day hospice and carers can join the hospice’s carer support group.
Lisa added: “The aim of the pilot is to see whether running a specialised programme combining a palliative model alongside the medical model for patients with chronic lung disease would improve outcomes for patients. It will provide such patients with a holistic approach to improve their quality of life. The programme will include 1:1 sessions, complementary/art/music therapy provided by nursing and allied staff from the hospice, as well as interventions from the respiratory nurse and sessions with a chest physiotherapist and chest consultant.”
The support has already proved extremely beneficial to those who have participated, enhancing the overall quality of life to both the patient and their loved ones.
Anne Kenner, one of the patients taking part in the pilot scheme, said: “I used to stay in my pjs all day before I began this pilot project. This new scheme has given me the confidence and motivation to get up and dressed and now I look forward to going out.
“Before I came, I didn’t really know what to expect. The word ‘hospice’ is a terrifying word and makes you think the worst. Attending these sessions has been great for me. I have made some great friends and there are other people in the same situation as me so I feel I can confide in them more. The sessions allow us to learn from one another as well as learn relaxation and other techniques that can help us with our conditions. Talking to the staff and nurses from both the hospital and the hospice is great and has helped dissolve my initial fears. My confidence has grown from strength to strength and I thoroughly look forward to coming each week.”
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