Study finds four in five people want to speak to healthcare professional about palliative care

Four in five people, if living with a serious illness, would like their doctor or healthcare professional to talk to them about palliative care if it could help them.

The finding is from a new survey of the public’s perceptions of palliative care commissioned by the All Ireland Institute of Hospice and Palliative Care (AIIHPC) to highlight Palliative Care Week (12 – 18 September ). The theme for the eighth annual Palliative Care Week is, ‘Palliative Care: It’s More Than You Think’.

The survey of 1,000 people in the Republic of Ireland carried out in July, also highlighted some of the misconceptions that exist about palliative care.

- 1 in 4 people would think they only have days to live if their doctor or healthcare professional talked to them about palliative care, whereas palliative care may be appropriate for several years, not just for weeks and days at a person’s end of life.

- 1 in 4 would feel their doctor is giving up on them if they talked to them about palliative care.

- Over 60% say they don’t mind where they receive palliative care as long as they have a good quality of life and their physical and emotional pain is managed, and they are comfortable. Palliative care can be received in many different settings, such as in a hospice/specialist palliative care unit, a hospital, a nursing home, or the person’s own home.

Speaking ahead of Palliative Care Week 2021, Minister for Health, Stephen Donnelly, said: “Palliative care is a key part of the health service in Ireland, involving a wide range of professionals providing the highest standard of care. Throughout the pandemic, the valuable work provided by our healthcare professionals has been brought into sharp focus.

“Palliative care plays a vital role in maintaining the quality of life for people with life-limiting conditions, and it’s important that everyone understands what palliative care is and the benefits of accessing this care when needed. Palliative Care Week helps to create this awareness and I encourage everyone to find out more.”

AIIHPC Director, Karen Charnley, said: “Palliative Care Week aims to help people to understand that there is more to this important care than they might realise. This week we would like individuals and families to think about palliative care and how it could help them in the future. 78% of our survey respondents say that palliative care is very beneficial and supports those living with any serious illness, and their families.

“It’s also clear from our findings that people, if living with a serious illness, would like to talk to their doctor about palliative care and that the general awareness about palliative care is growing. For example, this year 62% of our survey respondents understand that palliative care is not only for cancer but for people with all types of life-limiting conditions, and of all ages and stages of their illness.”

Aisling Keavey from Dublin is receiving palliative care at St. Francis Hospice, Dublin. In 2019, Aisling went into the hospital with back pain and was diagnosed with Stage 4 breast cancer; it had also progressed to her spine, resulting in bone cancer as well. At the St. Francis Hospice, Aisling completed the PEER (Palliative Enablement Exercise and Rehabilitation) programme, which brought her into contact with other patients going through similar experiences.

Speaking to mark the launch of Palliative Care Week 2021, Aisling said: “We get great tremendous help from the hospital and St. Francis Hospice. Initially, they came out to the house to explain how they could support me and after lots of phone calls, I went along to get therapy. Then when COVID hit they still kept in contact by phone and Zoom and they introduced me to others via the PEER group course. This has been a great help and support. Palliative Care supports have made our lives much easier.”

Sheilagh Reaper-Reynolds, HSE National Lead for Palliative Care, said: “Being told that you or a loved one has a life-limiting illness is devastating as it brings with it feelings of fear, hopelessness and loss. Most people are aware that palliative care improves physical discomfort and pain; however, another important aim of palliative care is to encourage us to talk about our feelings and anxieties.

"This helps ease the mental and emotional distress associated with the diagnosis, which in turn allows us more time to focus on the people and activities that really matter to us.”

Palliative Care Week reflects AIIHPC’s commitment to raising awareness of the positive impact that palliative care has on the lives of people with serious health conditions and those closest to them – it allows them to live their lives as fully as they can by supporting their physical, social, emotional and spiritual health needs. The week also recognises the role of all our healthcare professionals who come together, even throughout a global pandemic, to provide palliative care services and support in communities all across the island of Ireland.

Visit https://thepalliativehub.com/palliative-care-week-2021/ to find out more. #pallcareweek.