It’s not all about dying – early palliative care results in improved quality of life and survival in patients with advance chronic respiratory disease

Dr Charles Reilly, Consultant Physiotherapist in Chronic Respiratory Disease, King’s College Hospital NHS Foundation Trust, Prof Claudia Bausewein, Professor of Palliative Medicine, Munich University Hospital, Germany, and Prof Irene Higginson, Professor of Palliative Care and Policy, King’s College London; Director of the Cicely Saunders Institute, London, UK.  

Left to right: Dr Charles Reilly, Prof Claudia Bausewein and Prof Irene Higginson

Breathlessness is a torturous symptom, which significantly impacts on the life of patients and their families. Refractory breathlessness, i.e. breathlessness that continues despite optimal treatment of the underlying condition is common in patients with advanced disease; however, clinicians struggle to manage/palliate this symptom effectively. Sudden onset of breathlessness or breathlessness ‘attacks’ is frightening, for both patients and their families, often resulting in emergency hospital admissions.

In response to an unmet need of our local population, we at King’s College London developed an innovative integrated Palliative Care, Respiratory Medicine and Physiotherapy service known as the Breathlessness Support Service (BSS) to address the needs of these complex patients. The BSS offered early and rapid access to palliative care, respiratory medicine, physiotherapy and occupational therapy, where patients and carers were active partners in this service, and not passive recipients of care.

Components of the service were comprehensive palliative care, respiratory and physiotherapy assessment, individualised information for the patient, non-pharmacological interventions such as a hand-held fan, exercise, a crisis plan, and optimisation of pharmacological management. A paper on the effectiveness and cost effectiveness of this service was published recently in the Lancet Respiratory Medicine (accessible via the link below).

Our randomised controlled fast-track trial of 105 patients showed that patients who received the integrated palliative care and respiratory BSS had, at six weeks, significantly improved breathlessness mastery, a domain of a well-established quality of life measure. Mastery assessed patients’ feeling of control over their breathlessness and its effects on quality of life and function, and was on average 16% higher for those patients receiving the breathlessness support service.

A patient who received the BSS described it as follows:

“The blissful thing is, like I’ve said is, you can control your breathing, if you get a bad spell you can work your way through it whereas previously when I was choking I really didn’t know what to do”. (Man with ILD – interstitial lung disease).

The breathlessness support service did not show a significant advantage for other secondary outcomes, although there was a tendency for improvement in the ability to undertake activities of daily living, less depression and lower breathlessness on exertion compared to the control group.

The BSS also had an impact on survival for those receiving BSS. The difference between the intervention and control group appeared early on and then remained constant so that by six months 50 of 53 (94%) of the early breathlessness support group patients were alive, versus 39 of 52 (75%) in the control group. However, this was a secondary outcome. Therefore, it has to be treated with caution.

Total care costs were the same for both groups, so the breathlessness support service was not more expensive than usual care.

This is the first study demonstrating the benefit of early integration of palliative care for patients with advanced chronic respiratory disease, who traditionally may not easily get access to palliative care.

Download the full article…
This post relates to a longer article, ‘An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial’ by Higginson I J, Bausewein C, Reilly C C, Gao W, Gysels M, Dzingina M, McCrone P, Booth S, Jolley C J, Moxham J. The Lancet Respiratory Medicine, published online 29 October 2014, doi: 10.1016/S2213-2600 (14) 70226-7.