What good palliative care means to me
What kind of support would you want if you were diagnosed with an illness which wasn't going to get better? It's a tough question, but one which many of us face if we or a loved one are diagnosed with a terminal illness.
But it's not just about the illness. Good end of life support also encompasses what someone might need psychologically, socially and spiritually too.
Some Marie Curie staff who work with people living with a terminal illness on a daily basis share what else they feel matters at one of the hardest of times for them and their families.
Spending the time to get to know people
– Faye, Marie Curie Nurse
“As a palliative care nurse, you care for the patient as a whole person, rather than just treating the disease.
“Every day has special moments – whether it’s helping to fulfil someone’s final wish, having the time to curl their hair and paint their nails, or simply sitting and holding a person’s hand when they need somebody to talk to.”
– David, Marie Curie Nurse
“Every shift is different because every person is different. When I first come in, I see what stage the patient is at. Some people just want you to hold their hand. Others want me to explain everything to them and how it works.
“This job is not based on a job description – it is much more than that. Some patients might want a bath in the middle of the night. If that’s what they want, I do that.”
Improving small things which make a big difference
– Karen, physio
"It’s the simple things you can do to help someone achieve a small goal – like be able to take the bus, or go to a family wedding.
"You might only need to take a few steps to get to the bathroom, but being able to go to the loo on your own – it’s a matter of dignity and it makes a huge difference."
Being there for the whole family
– Karen, Marie Curie Nurse
“As a Marie Curie Nurse, I’m also there to support the family, and talk to them about their concerns or anything else they want to discuss.
“Some people are upset about their situation and why this is happening to them. I try to reassure them and say that we’re not there to do anything they don’t want us to do.”
Helping people keep their dignity
– Helen, Marie Curie Nurse
“Our dignity is something that we all often take for granted. But when it’s at risk or being taken away from us by disease and medical treatment, the impact on the person or the family can be devastating.
“Part of my job is maintaining or giving back someone’s dignity during their stay and at the end of their lives.”
Being there to talk
– Glyn, social worker
"Living with a terminal illness or seeing someone you love going through the experience is a challenging, difficult and traumatic time for patients and families.
"It’s one of the most difficult points in a person’s life.
"People often open up and talk to me very freely about things which they may not have talked about for years. I think they feel the hospice is a very safe space.
“Being a part of that is really special and humbling."
Listening is so important
– Lynne, Marie Curie Nurse
“You have to be able to listen first and foremost. I can talk to for England, but you learn an awful lot more by listening than you ever do by talking.
“That is one of the key things – you let people open up, you let people talk to you.”