Improving end of life care for people with lung disease

Categories: Care and Policy.

Jessica Eagelton, Policy and Public Affairs Officer at the British Lung Foundation, writes about their work to ensure respiratory health is a national priority.

The Taskforce for Lung Health, a coalition of 30 patients, charities and professional groups, came together last year to publish a five year plan to improve respiratory health. Too often, lung disease has not been a priority for national decision-makers. The Taskforce wants to change this and give everyone a greater say in the care they get throughout their illness.

The plan, published in December, follows the journey of someone with lung disease, from prevention, through to diagnosis and treatment, long-term management and end of life care.

When the British Lung Foundation first set up the Taskforce in 2017, we were driven by the need to transform care for people with lung disease. One in five people live with lung disease and countless more are affected caring for loved ones. However, outcomes have not improved in over a decade and the UK now has the fourth worst mortality rate in Europe.

Lung disease kills someone every five minutes, with lung cancer and COPD in the top five most common causes of death. Despite this, there has never been a comprehensive respiratory plan in England.

Access to respiratory services varies across the country and public awareness of lung disease is generally poor, so people can miss the early signs of illness. Lung disease is often diagnosed very late, when it can be too late for effective treatment. There is also a stigma surrounding lung disease as a ‘smoker’s disease,’ but in fact there are a variety of causes and anyone can be affected.

Our recommendations

To develop our plan, the Taskforce launched a call for evidence so clinicians, patients and carers could give their thoughts on what changes they would like to see to services and policy.

For the section on end of life care, the Taskforce reached out to palliative care researchers and clinicians and spoke to patients and carers too. We then used the principles of the National Palliative and End of Life Care Partnership framework to develop these recommendations:

  • Every person with lung disease and their carers should have access to a shared decision-making programme so they can identify areas where they need additional support
  • People with lung disease should be supported to stay at home where appropriate
  • Health care professionals should be aware of the range of therapies that can help with and mitigate breathlessness, pain, depression and anxiety at the end of life
  • Generalist and specialist respiratory and end of life services should work together to deliver end of life care
  • All health care professionals should be able to offer basic end of life care advice

We want every person with lung disease to be able to work with their health care professionals, carers and family to decide their end of life care. Lung disease is often unpredictable and symptoms can be inconsistent, so planning for the later stages of lung disease should start early and be revisited. Patients told us that they wish their doctors were more open about starting conversations about death and care planning. The Taskforce welcomed the announcement in the NHS’s Long Term Plan that training will be rolled out to help staff support patients nearing the end of their lives.

“The doctor, the nurse, the oxygen supplier and my carer have all talked about the days to the end and how it will be managed. The drugs are in place and regimes agreed upon that will hold me secure through the difficult days leading to those final moments.” – David, who was in the final stages of idiopathic pulmonary fibrosis

We consulted with patients and carers, who reported that breathlessness can be a particularly distressing symptom towards the end of life. Staff can be better supported to manage breathlessness by using treatments like breathing techniques, handheld fans and emotional support. These can all be effective and are relatively simple.

Whilst developing the plan, we came across great examples of respiratory and end of life services working together. For example, New Cross Hospital has introduced a joint palliative and respiratory clinic. Significantly fewer people reported being anxious about illness and treatment after attending the clinic. We need to see more programmes like this delivering joined-up services so patients get the best possible care.

But supporting people as their illness worsens goes well beyond hospitals and GP surgeries. Hospices play an invaluable role in helping people with chronic and advanced lung disease to stay well. By delivering rehabilitation and breathlessness clinics, hospices help people take control of their illness and reduce fear and anxiety, as well as supporting the health system by reducing the chances of unnecessary hospital visits.

We want patients and their loved ones to understand more about the support offered by their local hospice. By ensuring that patients, frontline health services and hospices are all engaging with each other, we can offer everyone the holistic care that they need.

Next steps

The Taskforce’s united approach has already had success. Respiratory was included as one of just five clinical priority areas in the NHS Long Term Plan – the first time lung health has been prioritised at this level.

We are working with the NHS to ensure the promises in their plan are delivered. But we need to go further and want the government and the NHS to implement the Taskforce’s plan in full. This will mean linking up with hospices and many other stakeholders to work out how to make our ambitions a reality.

If you’d like to help us make the plan a reality, you can use our online tool to email your MP and ask them to support the plan. If you work in end of life care and want to get in touch about how you can support the Taskforce’s recommendations, email us at taskforce@blf.org.uk