What do terminally ill people and their families really want?

by Dr Phil McCarvill Head of Policy


Last week, ahead of our 19 March parliamentary event to launch our new report Difficult conversations with dying people and their families, we asked people on Facebook to tell us the one thing that politicians could do to improve end of life care. In return, we promised them – if you tell us, we’ll tell them.


Infographic showing end of life care issues mentioned by Facebook followers


 


To help us understand their responses, we decided to produce a simple infographic to present the top 10 responses, with the size of the lettering reflecting the number of responses for each category. At the event, we shared with politicians what our Facebook followers had told us, and will continue to share this feedback with decision-makers and influencers.


More nurses, please


Perhaps not surprisingly, given that it was Marie Curie asking the question, the biggest call was for more community nursing, with respondents repeatedly citing the vital role played by our nurses in supporting people and enabling them to die in the place of their choice, surrounded by their families.


More funds, better coordination


This was closely followed by the need for more funding for all forms of end of life care and greater coordination of different services to ensure that terminally ill people and their families received joined-up and consistent care and support.


Increased support for the whole family


People also wanted to see more support available to enable terminally ill people to remain at home, if that is what they choose. This support includes everything from befriending schemes through to greater access to social care support. This is echoed by the call for a whole family approach, which responds to the needs of the wider family as well as those of the terminally ill person.


Consistent coverage


Families also wanted greater consistency in what is available to people in different geographical areas of the country and an end to the postcode lottery.


Jon Culshaw (left) helped launch Marie Curie's report at Westminster

More funding for hospices


Many people cited the important role that hospices, including Marie Curie hospices play in providing excellent quality care for terminally ill people. A major issue remains the need for greater funding, with NHS commissioners currently only providing around 34% of funding for hospices. More funding would enable hospices to provide high quality care for a greater number of people.


Improved care at hospitals


Respondents also focused on the need to improve care for terminally ill people in hospitals, with recurring references to a lack of privacy and failure to treat terminally ill people with appropriate levels of dignity and respect. This is particularly important given that the majority of people continue to die in hospital.


Better communication


The important role played by health and social care is also reflected in the call for stronger communication training and skills for all involved. Our Facebook followers felt more training is needed for professionals so they are better able to deliver bad news. They also asked for more support for individuals and families, to help them to communicate more effectively among themselves and plan the right care that works for them.


Bereavement support


Finally, families wanted more bereavement support to enable them to come to terms with the loss of a family member and adjust to life without them, a theme echoed repeatedly in the Difficult conversations report.