Palliative care is provided to people who have a incurable illness. It is offered when a person’s illness is reducing their quality of life on a day-to-day basis. Although palliative care can include end-of-life care it is not only offered at the end of someone’s life.
It is aimed at making an individual and their family and caregivers, feel comfortable and supported. It is different to care methods that aim to cure or treat a condition. Palliative care can help reduce the number of visits to hospital and helps people feel less burdened by their symptoms. It includes managing any physical pain, difficult emotions or other distress as well as giving social, mental health and spiritual support.
Long term conditions, such as chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD) can cause serious illness. This is defined as the stage when a person is unable to continue with their normal life and requires support. This care is often taken on by relatives, loved ones or friends. These people can be referred to as ‘informal caregivers’ – people who provide care but not in a paid-for professional role.
Guidelines for palliative care for people with COPD and ILD
The European Respiratory Society has produced guidelines for palliative care for people with COPD and ILD. Within these guidelines, palliative care is defined as:
“A holistic and multidisciplinary, person-centred approach aiming to control symptoms, and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers.”
The guidelines are aimed at healthcare professionals. They use them as a ‘best practice’ document in how to deliver palliative care. You can read a full version of the guidelines on the European Respiratory Journal website.
Recommendations from the guideline
When should palliative care be offered?
Palliative care is relevant throughout the whole course of a disease. It is not just for people at the end of their life. It can also be used together with therapies aimed at treating the disease. The guideline recommends that palliative care should be considered for all people with COPD and ILD and their informal caregivers, who have unmet needs. Unmet needs could be: an informal caregiver feeling distressed, a person becoming increasingly dependent on care, or worsening physical symptoms such as pain or breathlessness.
What is advance care planning?
Advance care planning gives people the opportunity to plan and discuss their care in the future, while they are well enough to do so. This includes what medical treatments they would like or not like, how and where they want to be cared for, and where they would like to die.
The guideline recommends that advance care planning is offered to all people who are diagnosed with COPD or ILD. These conversations can feel very challenging and it is important that healthcare professionals use a compassionate approach in these discussions. The questions they ask could include:
- What do you want to happen with your care in the future?
- What would you not like to happen in the future?
- Who would you like to speak for you when you are unable to?
What should palliative care include?
Palliative care can be complementary to other routine care and the guideline recommends that it is integrated alongside methods that are helping to manage the condition.
Palliative care should include:
- an assessment of a person’s symptoms and their physical and mental health and their social and spiritual needs
- mental health support for people living with COPD or ILD and informal caregivers
- consideration of spiritual/existential needs, such as spending time with people or following religious customs
- effective and compassionate communication
- a discussion of current goals of care and advance care planning.
Palliative care should also be delivered while respecting the personal and cultural beliefs and values of the person who is ill and their informal caregivers. Where possible, it should be offered by a multidisciplinary team of professionals from different areas of care. This could include: nurses, social workers, pharmacists, psychologists, physiotherapists, physicians, occupational therapists, dietitians and pastoral care workers.