Our new columnist, Jill Hyland, from Walmer Care Centre, shares with us her experiences of setting up the Gold Standard Framework in her care home – a set of principles that focuses on both living well, and dying well…
Improving end of life care is a passion of all the staff at our care home because collectively we all bring something to the team. At Walmer a few years ago, everyone avoided asking the hard questions, the questions no-one wanted to ask or hear. Staff struggled to start the conversation with residents, and this would affect our care plans and therefore how we met each individual’s needs.
So, we made a few changes to how we approached the topic, working with family members in the home and their relatives. To start with, we introduced an ‘end of life wish list’, which was an activity to do with the family. The resident could say anything they wanted, and this included to jump out of a plane, bungee jump, travel the world or even go back to the home they were born in. With a mixture of questions, the topic was much easier to approach. We found out so much information this way, for example who they wanted with them, what music they had chosen, where they wanted to be, who they wanted to see again – whether it was a famous person or not. We also introduced our wish tree. Every new year we get wishes for that year and add these to the tree, and once completed we save the wish to reminisce on at a later date.
We had so many thoughts and wishes from everyone – we robbed a bank, went on a steam train ride, travelled the world, jumped out of a plane, swam with sharks, sang with Bing Crosby, went to an Abba concert, paddled in the sea, home-brewed wine, went to the fair and climbed a cannon in a castle! Some simple but meaningful memories were made, whether it be in reality or in virtual reality. We tried our best to fulfil the wishes as close to their expressions of them as we could.
This, of course, made us think more about the quality of life whilst living. It is truly not about dying, but about making each individual’s life, whilst at the home, a quality experience with memories to cherish.
A Framework for Life
We joined the Gold Standard Framework, which is all about living well and dying well. So, we don’t just look at the activity wishes people have, but we also take into account their spiritual needs too. Culture and religion are a big part of making sure we get it right for them. The work we already do at the home linked really well with this. For instance, staff have visited local undertakers, and have agreed to an embalming session to show staff the next step, so we know dignity does remain until the very end.
By doing all this training, we were opened up to new ways to discuss dying and being better prepared for it by planning. We began having Advanced Care Plan discussions, creating a team with GPs and nurses, so staff training became more open. We have more reflective practice with staff to identify what we have done well, what didn’t work and what we can do better next time.
Walmer Care Centre also has support groups for staff, to support them after a resident’s death. Sometimes we forget that we look after the family day in, day out for months or years, and some of our residents – we call them ‘family members’ – have been with us for 11 or more years, so it’s important to remember staff feelings and help them through this process.
Time to Remember
We create comfort boxes for family members and their relatives, making a truly personal touch for the individual person. Dignity remains all through the dying process, and after a family member has passed away, a purple heart is placed on their door, a candle in their room, flowers from the garden to go with them and we hold a wake for the family members at the home. Our reminiscence book helps us to never forget and share memories together, and then we complete our memorial in the garden.
We always join in the Dying Matters Week and use this to raise awareness of the importance of talking about dying, letting people know it’s ok to ask those questions. What we work on is how we do this for each individual, as some people need an open approach and with others we need to be more gentle. We encourage everyone to be open and talk about the dying process with families too, as sometimes the process is far more distressing for them, and sometimes knowing what to expect can help awareness a bit more.
As a home we always ask for feedback from families and like to include them in the home, whether via Facebook, meetings, parties or email updates.
The importance of being open and talking about death is vital to ensure we get it right for the family member. We make sure we have tried to fulfil all the wishes, and have made their wishes heard by all staff, family and friends. Anyone that needs to know must be told, and also be aware that the individual gets to change their mind at any time.
Fulfilling all the wishes has been an amazing experience for staff and individuals. Having fun, making memories and making sure their wishes are respected until the very end is a great privilege.
Jill Hyland is a registered manager at Walmer Care Centre, a small home for 37 residents. She began her career in care in 2003, working her way up to a senior team leader and deputy and then manager of the homes in 2010. She says: “I’m always learning and finding ways to improve the lives of the family who live in our homes.”