This Saturday is World Hospice and Palliative Care Day, which celebrates and supports the vital role of hospices and palliative care around the world. It also falls during Hospice Care Week (9th – 15th October 2017), which not only raises awareness and understanding of the needs of people living with a life limiting illness, and their families, it also encourages people to have conversations about such issues.
At Healthwatch Essex (HWE), we provide a voice to the people of Essex, gathering and disseminating the lived experiences of those accessing health and social care. Lived experience encompasses all aspects of the life cycle, yet end of life remains a topic that few people discuss.
A recent survey[1] found that while two thirds of the British public say they are comfortable discussing dying with family and friends, dying is actually one of the topics people feel least comfortable discussing. It also found that people don’t often discuss the type of care and support they would want at the end of their lives. Around three in ten (29%) people say that they have discussed this with anyone, while fewer say they have discussed it with their partner (19%) or their parents (14%).
Yet, expressing our views, preferences and beliefs is such an integral aspect to living and dying well – as a recent publication, Let’s Talk About Death and Dying, by Age UK and Malnutrition Task Force demonstrates. The booklet is designed to help start end of life conversations by empowering people to feel confident to talk about death so they are able to be sure what a loved one would like to happen when their time comes. This topic is not just for the sick or elderly: we will all face end of life and the more these conversations are normalised, the more likely people will plan ahead.
Planning ahead is sometimes called ‘advance care planning’ (ACP): a ‘wish list’ that details the ways a person hopes to die. ACP is a process that occurs in conversation with one’s family and a health care professional, and is not legally binding. It involves discussions around a patient’s wishes for future care and treatment to prepare for events in which patients may not be able to make decisions for themselves. The main goal is to clarify peoples’ wishes, needs and preferences and deliver care to meet these needs. The evidence shows that those engaged in ACP experience end of life care that more closely matches their wishes than those who do not. Yet, only 8% of people have engaged with ACP.
Our latest research project, focussing on palliative care, aims to look at why so few people engage in ACP conversations. The study will explore how ACPs are communicated in both a hospital and community setting, using a range of qualitative research techniques: observations, interviews and focus-groups. By doing this we hope to understand the barriers and facilitators to ACP conversations from a patient, carer and professional perspective. We plan to offer recommendations around the barriers and facilitators to ACP, improving the experiences of those approaching end-of-life.
Sarah Haines – Research Associate