Last week, more than 20 care providers gathered in Market Lavington for Nourish Care’s ‘Together We Care Better’ (#TWCB) event in association with Wiltshire Care Partnership. The topic up for discussion was end of life care and our CEO, Nuno Almeida, hosted the roundtable event.
Also in attendance were representatives from the residential, nursing and domiciliary care sectors, many of whom specialise in end of life care, and legal experts. Our panellists included Carolyn Ryves, Gold Standards Framework Ambassador; Beverley Warman-Johnston, Family Liaison Officer from The Grange Nursing Home; and Corinne Slingo, Partner at DAC Beachcroft and Head of Healthcare Regulatory Team.
The purpose of the event was to bring together professionals from the industry to discuss best practice and challenges faced by care providers. With an emphasis on providing the highest quality of care possible, the discussion focused on tangible actions care providers can take to enhance their end of life care provision, in order to support both the resident and their family members.
Nuno opened the discussion by highlighting some of the key statistics around peoples’ wishes. He said that while 63% of people want to live their remaining days at home, the reality can be much different.
Instead, as people come to the end of their lives, often the physical where becomes less important. Rather, people want to be comfortable, surrounded by their loved ones and in an environment that makes them feel safe and cared for. This is why end of life care is so important and as Nuno added: “It’s human nature that end of life care is an uncomfortable topic to talk about but that’s something we need to change.”
Issues raised and discussed around end of life care
Perhaps the biggest point of discussion was the importance of open communication. Being such a sensitive topic, conversations around end of life care cannot be forced and need to evolve naturally with everyone involved as you build strong relationships. It’s about having multiple conversations at the right time, and ensuring patients have the opportunity to discuss their preferences at a time that suits them. It’s also about empowering the care team to feel comfortable having these conversations, which may require appropriate practical and emotional training.
Carolyn said: “Good end of life care is all about good communication. End of life is ingrained into the fabric of our home. It’s about removing the ‘taboo’ and making sure all staff, residents and families are comfortable having end of life conversations.”
Following from open communication is the importance of creating a culture which supports good end of life care. Change in culture stems from leadership, and more should be done to create an environment that means people are comfortable talking about end of life. It can be challenging but you want to inspire your care team to be passionate and proud of the end of life care they provide. One attendee commented: “It comes from the top. You have to set expectations. Staff need to know they can ask questions. It’s always a sad situation, but I know my staff can hold their heads up high and be proud of the support they gave to the resident and the family.”
Another key consideration is the support of the family. Care providers should clearly illustrate to family members what support is being provided to the resident and what support is also available to them. It’s the small details, such as the arrangements in the final days and whether family members want to be present and stay over, to the requirements immediately after someone has passed away, that can have a real impact.
Beverley commented: “It’s making the whole transition and process much easier for the family. We support the family from the very beginning and throughout so there is always a familiar face there who they can go to, all the way to attending the funeral. It’s just about us supporting them wherever we can and trying to make everything just a little easier.”
Everyone involved agreed that the legalities of end of life care planning can be complex, and seeking legal support for the home should always be considered to tailor advice to your environment. The overarching importance of the legal information discussed was to ensure that an individual has control over their own life, wellbeing and end of life wishes. The legal documents ensure they have this.
“It’s about giving people the control to decide what they want,” Corrine emphasised.
A final key consideration is the importance of flexibility. One attendee highlighted that a good care plan is important, of course, but that you have to accept that end of life rarely goes according to plan. She said: “It’s more about building a good relationship and understanding the person you are caring for.”
End of Life Care in the Care Sector
A key theme from the event was the feeling that there aren’t strong guidelines in the sector around end of life care. Naturally, every care provider operates differently, however it would be useful to have more guidance in place to ensure all parties included in end of life care are fully involved, from doctors and other healthcare professionals to care providers, family members and legal representatives.
This is a view further supported by a recent Government report on how the National End of Life Care Programme Board is delivering personalisation and choice in care for people at or near the end of their life. One of the proposed measures includes supporting the roll-out of digital palliative and end of life care records to all areas by 2020.
End of life care was also an area of focus for the changes to CQC’s assessment framework introduced in November. One new Key Line of Enquiry (KLOE) states: “How are people who may be approaching the end of their life supported to make informed choices about their care? Are people’s decisions documented and delivered through a personalised care plan and shared with others who may need to be informed?”
Hopefully the above considerations give you, as a care provider, a good place to start.
Get involved with our Together We Care Better events
We are committed to empowering the care sector and improving the quality of care. Our Together We Care Better events are just one initiative to provide a platform for open and positive discussion about how this can best be achieved.
If you are interested in partnering with Nourish Care to host a Together We Care Better event or would like to be kept up to date with future events, please get in touch with our team by emailing firstname.lastname@example.org.