Last week was Dying Matters Week, a week dedicated to opening a conversation around what it means to have a good death.
For many it is perhaps a topic that they avoid going near, but for many a conversation can be beneficial.
We met with Kathy Newbould the head of clinical services at Saint Michaels Hospice in Harrogate. She manages a group of managers and is part of the leadership team.
Kathy has been with the hospice 27-years and now manages a team of clinical managers, providing support to individuals with a terminal or life-limiting condition.
I am one of a group of directors, but my focus is around the clinical services that we provide.
I am a registered nurse, trained at the old Harrogate School of Nursing, worked at the District Hospital for a few years, but I always knew I wanted to work in palliative care, so when Saint Michaels opened in Harrogate, I just knew it was the right thing for me to do.
Sometimes the question that is put to me is why palliative care, but it’s about working with people very closely in a way that makes such a difference to them and gives them a lot of reassurances. It’s about learning about them and what help they need. It’s about learning what the the individual needs and being there at the important times.
There is no more an important time when you are approaching the end of your life.
Saint Michaels supports people with an active and progressive condition. It could be that those people may not need their services for some time, but making the services accessible is important. It provides a service to help stabilise some conditions, and make being at home better.
Dying matters week really helps people to start talking about it, you don’t necessarily dwell on it, but it can be time to talk to family, for people to think about what they want for themselves.
It’s aimed to be a trigger and to help people to start to talking in a way that helps them and reassures their families. In many ways it is part of the daily work of Saint Michaels.
We provides symptom control for people that need 24-hour monitoring and support. They then leave Saint Michaels and lead a better quality of life.
But we have expanded our home service over the last year significantly, because people want to be at home. We have always wanted to reach more people and it recognises that the hospice is brilliant for care, it’s not always someone’s first choice, so if they want to be at home, we want to support them in doing that. It’s about allowing people choice.
It’s about being in good place, geographically and to to support someone realistically in what can be achieved. But it is individualised care and what is right for one may not be right for another.
There can be lots of stresses, not just for a patient but for the wider family. It could be things like knowing where you go with benefits or funeral costs, it can be help making people aware of what is available and how to access them.
During the lockdown Saint Michaels was forced to change the way it works. Some of those changes were due to happen anyway, the lockdowns just accelerated the implementation.
When the first lockdown happened, we had to stop visitors to the hospice, but we wanted to make sure we could have the best contact possible, so we setup the family liaison team to give a morning update, pass on messages, offer support and take messages back. That would sometimes make us aware of specific problems that we may not have been aware of. That opened up a new service that we have decided to carry on with as it was so beneficial. People felt in the know and supported.
That concept has opened up into other areas such as bereavement support, social work side of things and helping with finances, but giving information that is useful to them.
All the nurses are very close to the patient and the support is just part of what they do.
A few years ago we had one family where it wasn’t possible for dad to be at home, and lived here as a family. But it became more and more apparent how important their privacy was, and on a day to day basis they wanted their protected time together. That was for family time or husband and wife time, that made such a difference to them. Although Saint Michaels is such a beautiful place, it isn’t home.
We encourage people to say what matters to them, as it matters to us.
Family events are important and we try to accommodate what people want. We had one where we setup a table for a couple to celebrate their wedding anniversary. It was a simple thing to do an many ways, but it meant so much to them.
But in a similar we open that conversation up with our patients, that’s what many people should do with their friends and relatives.
While it can be a slightly uncomfortable conversation, it can also be a settling conversation all those involved.