“The essence of our work is to help people to live well - that’s our focus. Whether you have many years, months or days to live, it’s about living every moment and making it as good as possible today.”
As we mark Dying Matters Week, Physiotherapist Manisha and Nurse Claire from The Hospice of St Francis talk about the day to day life of Hospice care and the impact it has on patients and their families.
What’s impact does hospice care have on patients and their families?
When people walk into our hospice they feel calm. It’s a really beautiful and welcoming environment. It’s not a scary place. The person is genuinely the centre of the focus of care – in my view, that’s why hospice care is so unique and important.
A lot of people associate palliative care with dying. That first assessment can be a big thing when you cross the threshold. It’s about talking it through with patients and gently challenging any assumptions they may have. We are mindful of that and take it at people’s own pace.
Some of our PF patients have been coming for years. We have young people, teenagers and families coming in that we support. A goal from one of our patients was to walk their daughter down the aisle. We spent time doing rehab so he could do this.
When you know time is limited it means today is really precious. What surprises me about hospices? How much laughter, life and love there is. That’s what people say. There is a reality, it’s lovely!
We also have a carers support team. We know that carers can feel that they have to stay strong for the patient. We gives them the opportunity and space and to talk freely and honestly about the things that challenge them. This continues with bereavement support so people are able to talk and reflect.
We often support children and grandchildren of the family member. Pulmonary fibrosis is not as well known as other lung conditions so they might not be getting the information/support that they need. When we first started the pf support group, we specifically had a carers support member who came and allowed the carers to vent/discuss their stresses and their fears. They have formed close bonds outside the group as they have common ground. We support carers as much as patients.
How do you feel about working in palliative care?
I’ve worked in many different healthcare settings. Working in a hospice has been the most rewarding. It’s a privilege to care for the people we care for. We are personally involved in their stories and we have the time. We have so many different professionals that work in the hospice, from; counsellors, psychotherapists, art therapists, children services, wellbeing team, nurses, doctors, complementary therapy to the catering team.
I love my job. I love the fact that it is person centred. We have time to not just focus on the physical symptoms but to look at the whole person. We have that opportunity to listen and to make a difference. We get a lot of job satisfaction helping people live well and die well. It’s rewarding and a privilege.
Why in your view is palliative care so important?
Palliative care is an area that we feel like should be in all settings. Spreading the word is vital.
In our society we don’t like talking about death and dying so we tend to avoid it. It’s good to have an environment where you can have an honest discussions about the things that you hope for and the things that you’re worried about. Once you’ve had those discussions you feel so much better and you can get on with the living but I do understand it will be different for everybody.
Often once patients have benefited from the input of palliative care they are quite passionate and want other people to know and benefit from it too. We are safe pair of ears to talk about their hopes and fears.
Who are the unsung heroes?
The volunteers. We have over 1,000 volunteers. We have more volunteers than staff by several folds. Our garden is stunning and immaculate and it’s run by an army of volunteers. People put so much love into their community. The kitchen is made up of volunteers too. We have a range of volunteers from; retired doctors to counsellors and teachers.
The fundraisers too, they are our community. It’s not a statutory service, we are dependent on our community, it makes it feel special, that means the community is invested in us which is fantastic.
Manisha & Claire:
Talking about end of life care doesn’t make it happen. It just means you’ve had time to think about it. The tagline for Dying Matters Week is ‘In a Good Place’. We want to help people get themselves in a good place mentally and practically. If you’ve put things in place you’ll feel better and live better.
When palliative care/hospice is mentioned people shouldn’t get frightened.
They don’t just support end of life. They help people live with there illnesses.
The hospice I attend has helped and encouraged me to be more active. They also helped me when I wanted to speak to my husband about my future. They support all the family.
Teresa, pulmonary fibrosis patient.
If you feel you would benefit from palliative care, talk to your GP or your nurse specialist. You can also self-refer to your local hospice by visiting their website or giving them a call.
To find out more about The Hospice of St Francis on their website
Find out more about hospices at Hospice UK