'Palliative care can be a journey': Glasgow hospice worker says job 'isn't all about death'

Jane Miller is a community advanced clinical nurse specialist at The Prince and Princess of Wales Hospice in Glasgow, where she said: “Every day is different because every patient and every family is different.”

The day-to-day of working in palliative care involves a variety of paperwork, phone calls, allocating the appropriate services to any new referrals, and going out on visits to support patients to “live well and die well in their own homes".

Newsquest, Colin Mearns (Image: Newsquest, Colin Mearns)

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Jane had her first staffing job in 1994 in a hospice inpatient unit. She hasn’t been in palliative care her whole career, but after 15 years in a renal unit, she decided to return to community hospice care.

Jane said: “I was missing the interaction that you have with patients and families.”

Hospice care is often misunderstood, and Jane says she wishes people knew what it is exactly that she and her team do.

She said: “Often people think as community nurses we do hands-on personal care, and that’s not our role.

“Our role is very much about support and advice.

“I also wish people were more aware that it’s about living as well as dying.

“People seem terrified of the word hospice because they think it’s all about the very end of life whereas our role is very much about quality of life and not just death.”

Hospice care is provided for people with a terminal illness or a condition that is long-term and can’t be cured, and people can move in and out of palliative care.

Newsquest, Colin Mearns (Image: Newsquest, Colin Mearns)

Jane said: “I think as a culture we’re very scared to talk about death.

"We feel that it’s morbid, we feel that it’s depressing people, whereas as a palliative care nurse, I think it gives people the freedom to allow their loved ones to know their wishes.

“Often, I have patients that say to me it’s an absolute luxury to be able to plan your own funeral.

“I know we can all do that if we’re open and talk about death.

“If you’re given a terminal diagnosis, it makes you think more about it.

“And it also, I think, sometimes, not always, but put pettiness aside.

“You see families coming back together, friends making up, that kind of thing because they realise that whatever they were fighting about wasn’t that important in the grand scheme of things.”

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Jane explains that people and families can avoid an ongoing state of mourning that prevents healing by being open about the end of life.

She said: “Often people don’t know if they’ve done the right thing for their loved one.

“They don’t know whether they wanted buried or cremated, they don’t know which songs they wanted at their funeral, they don’t know if they wanted it in a hospice or at home, and then after the death people feel guilty that they’ve not done the right thing.

“Whereas if they’re open and honest about these conversations, you know that you are doing your absolute best to fulfil their wishes.”

Newsquest, Colin Mearns (Image: Newsquest, Colin Mearns)

She added: “The most rewarding part of my job is when you know that somebody has had a 'good death'.

“It’s been as well symptom-controlled as possible, that they were prepared, that their family was prepared, they were where they wanted to be, and nothing was left unsaid, and that no wishes or dreams were unmet. That’s the triumph, that’s when it’s great.

“And I suppose, it’s just the absolute opposite then, the biggest challenge is when you can’t do that for any reasons.

“I hope people know that we are there to support any patient and their families through terminal illness no matter what disease it is.

“I want to raise awareness that palliative care can be a journey, it’s not just the last days of life.”

Hospices across the UK are partially funded by the Government but rely on community support for most of their annual income.

An annual event, Hospice Care Week, takes place from October 10-14 to recognise the work palliative care workers do for people at the end of life.