Palliative care: not only for people with a terminal illness

In June, Marie Curie published a new report, Triggers for palliative care, which reveals that people with terminal illnesses other than cancer often miss out on getting the care they need. It identifies a number of ‘triggers’ which show when someone should be offered palliative care.

Our report also highlights the fact that people with conditions which are not usually considered to be terminal – such as Parkinson’s disease, multiple sclerosis and acute stroke – face many of the same issues as people with a terminal diagnosis.

Evidence shows that palliative care can improve the quality of life for people with these conditions, alongside other active treatments. Despite this, it is not always easy them to get access to the care they need.

A life sentence

Anne Ferrett’s mother, Joan Baker, had Parkinson’s disease, but when she died in August 2013, aged 91, old age was cited as her cause of death.

Anne, who lives in Surrey, says: “Parkinson’s is a degenerative disease: it gradually makes things more difficult but it’s not deemed to be terminal. It affects all muscle coordination and activity. It’s not a death sentence, it’s a life sentence and Mum lived with her diagnosis of Parkinson’s for 10 years.”

“With my mum, her progression was quite slow at the beginning and for five years, she coped but things became more difficult and towards the end her decline became rapid.”

A good death

Joan was offered palliative care in her nursing home, which Anne believes made a huge difference at the end of her life. “I think Mum was very fortunate in that when she moved into the palliative stage, in the nursing home, it was a really good experience,” she says.

“She had an end of life care plan, which covered things like having her favourite music on and that she would like to be treated with dignity and respect. She wanted people to talk to her and touch her and to have her hair combed.”

The nursing home followed all these requests, giving Anne reassurance that her mother’s wishes were being respected. Writing an end of life care plan with the nursing home staff had given Joan a sense of control over her care.

“In the last few weeks, the nursing home staff were fantastic. The nursing and social care – which I’d always thought was very good – was stepped up to a different level. I thought: ‘This is how it should be.’”

Lack of knowledge

Anne was less impressed with her mother’s care during two hospital admissions in 2012. She says that staff showed a lack understanding of Parkinson’s disease and of Joan’s individual needs and wishes.

Joan had drawn up an Advance Decision which stated that she did not want to be resuscitated if she went into cardiac arrest. The hospital staff refused to display this by her bed and Anne felt she had to repeatedly remind them about it. She was worried that

Joan’s wishes would not be respected. Joan also experienced problems when her Parkinson’s medication was administered incorrectly. She had been admitted to hospital because she was finding it difficult to swallow and it was important for her to get her medication an hour before meals. This didn’t always happen, which made it difficult for her to eat.

How palliative care can help

Palliative care aims to give a person the best quality of life possible. As well as treating and managing pain and physical symptoms, it helps with psychological, social and spiritual needs. It is a holistic approach which treats people as individuals and provides support for their families.

Joan’s experiences shows how palliative care can help people with progressive conditions like Parkinson’s disease. They also show that more needs to done to make sure everyone who cares for people with serious and terminal conditions has the knowledge and training to deliver high-quality palliative care, when and where it is needed.

We want to make sure everyone who needs palliative care can access it. Please join our campaign and ask your local politician to prioritise care for people with all terminal illnesses.