Seven ways we deliver personalised care for people living with a terminal illness
In July the government published its response to the Review of Choice at the End of Life . The response outlines seven key areas for improvement to ensure the government meets its commitment to high-quality end of life care. One of these areas is to develop more personalised care for people approaching the end of life.
We know that high-quality personalised care can make a big difference at what is a very difficult time for people with a terminal illness, families, friends and carers – and our nurses and hospice staff already do a lot to support the government’s vision in this area.
1. Taking the time to get to know the people we care for
Because Marie Curie Nurses have the time to get to know the people they care for, they’re able to provide the personal care that can make such a big difference.
Marie Curie Nurse Bibi Smith recalls visiting a patient who told her about his lifelong passion for astronomy. Bibi says: “It was when the Hale-Bopp comet was very visible and in order to see it I had to help him walk the short distance from his bedroom to the kitchen window.
“When he got to the kitchen window and looked to the sky, he had an amazing look on his face because he felt that he’d achieved something that he wanted in his lifetime. To help him do that was a great experience that I’ll always remember."
2. Making sure families can be together at the end
“So much of what we do is making sure that families have that time together, no matter what the circumstances,” says Jan Palmer, an in-patient nurse at the Marie Curie Hospice, Cardiff and the Vale.
“I remember when someone being cared for at the hospice was very close to the end, and although their family was rushing to get there, we knew they wouldn’t arrive in time. We set up a last-minute phone call and the family pulled into a service station, and they were able to say those final words to each other that are so important.”
3. Looking out for family members and loved ones too
When someone is living with a terminal illness, it can be very hard for family and loved ones. Caroline Wheatley’s mother was cared for by Marie Curie Nurses in her final few days.
Caroline recalls: “The nurses would ask us: ‘Have you eaten today? Have you had enough sleep?’ They’d make sure we were looking after ourselves. The nurses were there to see Mum, but they seemed to care about us just as much. They’d let us know they had the time for us too.”
4. Providing care to everyone who needs it
When Pamela Chidwick’s brother Paul was diagnosed with terminal cancer he was worried he wouldn’t get the care he needed because he was gay.
Pamela said that the treatment that her brother received at the Cardiff hospice allayed his fears. With the support of the hospice, Paul’s partner of 24 years, Radjawana Tjalla, was eventually granted an expedited visa so that he could travel from Indonesia to be with his loved one in his final weeks.
“The staff at the hospice were brilliant with Radj and the care that Paul received was amazing. They embraced it. It was no different than if it had been husband and wife. It didn’t have any bearing on the care he received.”
5. Creating a home from home
Claire Crawford was 17 when her mum was cared for at the Marie Curie Hospice, Edinburgh. She has one particularly special memory of a night she and her mum were able to spend together.
Claire says: “Although I have many sad memories at the hospice, I have happy ones too. I used to stay with my mum in the hospice for sleepovers. One night we ordered in pizza, cosied up in bed and watched DVDs. My mum kept falling asleep. That didn't matter to me, I was close to her and I will always cherish that memory.”
6. Being sensitive to people’s personal beliefs
Observing the correct religious customs is a very important part of providing good end of life care. Marie Curie Nurse Hope Price remembers a particular case visiting a very devout Muslim man in his last few days.
Hope says: “It was important that people didn’t come into the house with their outdoor shoes on. Marie Curie Nurses are not allowed to take their shoes off, so we wore plastic shoe covers, like you do in swimming pools. That was important to him that we kept to his rules of hygiene and cleanliness.”
7. Going the extra mile to create special moments
When Janet was being cared for at the Marie Curie Hospice, West Midlands, her final request was to get married. Her partner Keith leapt into action with the help of Marie Curie staff to fulfil her wish.
Keith says: "Marie Curie Nurses from the hospice took Janet out to Solihull to get her outfit for the wedding. I went to the hospice to visit her as usual, and when she wasn’t in her room the other nurses told me they’d gone shopping! The staff even bought the clothes for her after they’d done a little collection.
"The service was held at the hospice; the registrar came, and there was also a blessing. We had a bit of a party and everyone was having a good time. Janet was smiling; you couldn’t have taken the smile off her face.”
It’s pleasing to see that the government is committed to delivering more personalised end of life care – the examples above show just how valuable it can be to people with a terminal illness, as well as their families and friends. We will continue to call for action so that everyone can get the care and support they need and deserve at the end of their lives.