Right care in the last year of life: improving awareness among health care professionals

For many people, lung disease will not be curable and symptoms will create increasing problems towards the end of life. But not all health care professionals are trained in end of life care. We think they should be able to offer basic advice. All people responsible for coordinating staff training across the NHS should consider specific requirements for end of life care within training programmes.

Practice example: Helping patients to manage breathlessness

St Christopher’s Hospice, based in Sydenham, South East London, introduced a Breathlessness Management Service three years ago. This is an outpatient service, led by a physiotherapist, occupational therapist and CBT therapist, to support people with chronic lung conditions by teaching strategies to cope with breathlessness better.

It uses the Breathing, Functioning, Thinking model developed by Addenbrooke’s Hospital in Cambridge. The service includes an individual assessment with a therapist, followed by three weekly small group sessions. Week One focuses on posture, breathing techniques at rest and strategies to manage acute breathlessness. Week Two is about function and movement, including gentle seated exercises and pacing advice. Week Three considers unhelpful thoughts associated with breathlessness and ways to manage anxiety and panic, including CBT techniques and mindfulness. The service is for carers as well as patients.

Kate Norman, Physiotherapist at St Christopher’s, says: ““Breathlessness can be a frightening and restricting symptom that many people with life limiting illness experience. We help them to understand this symptom and empower them by teaching strategies to cope with it more effectively. This is often evidenced by an improvement qualitatively in CRQ (chronic respiratory questionnaire) scores, increased confidence with activity and reduced anxiety associated with breathlessness.” 

We want health care professionals to be aware of the range of therapies which can help with breathlessness, pain, depression and anxiety at the end of life. They should understand that patients with lung disease often experience significant pain and mental health problems, but these symptoms are not always addressed.

Practice example: GP's training on helping patients at the end of life

The Royal College of General Practitioners (RCGP) recognises that GPs have an essential role in helping patients die with dignity, providing individualised care and minimising distress. GPs are trained to provide personalised plans for the care of patients approaching the end of the lives, including provision for a terminally ill patient to choose to die at home if they wish. The RCGP recognises that team work, cooperation across agencies and communication are fundamental to good end of life care.  To support general practice staff in end of life care, RCGP and Marie Curie have recently published new ‘Daffodil Standards’ which will be rolled out from late 2018.

Measure of success

Data need: Patient-reported experience of access to and use of therapies to mitigate breathlessness and other symptoms to be measured in proposed new patient survey, with a baseline established within one year.