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"They're not about dying and giving up": Here's how the Irish public misunderstands hospices

Our Lady’s Hospice in Harold’s Cross has a hair salon, a therapy golden retriever Rían, and an oratory to host services such as christenings and weddings.

Image: Shutterstock/DONOT6_STUDIO

IRELAND’S POPULATION OF over-65s is projected to almost triple to 1.4 million by 2046 – those over 80 years are due to quadruple over the same period.

Living longer means most of us will have more complex palliative health needs – but what does that mean?

A survey released earlier this month said that 55% of adults surveyed in Ireland had a basic or minimal understanding of what palliative care is.

Among that 55% of respondents, 27% were said to have a basic understanding; 12% a low level and 16% said that they did not understand what palliative care involves at all.

The head of the All Ireland Institute of Hospice and Palliative Care (AIIHPC) Karen Charnley said “it’s very important that the public are well informed and feel comfortable to discuss their concerns beyond the diagnosis of illness that cannot be cured”.

Dr Joan Cunningham, Medical Director of Our Lady’s Hospice and Care Services in Harold’s Cross, told TheJournal.ie that the biggest misunderstanding is that hospices are places ‘you go to die’.

“When I was starting out as a doctor I had an appointment to meet a consultant at a hospice ward, and the consultant didn’t turn up. And that stood out to me. [We need to be] teaching our medical students that [hospices] are not about dying and giving up.”

Wideshot Front 2 Our Lady's Hospice In Harold's Cross. The blue building was a hospice since the 1870s.

Palliative care has evolved quite a bit in the past few years from being medically-focused to adopting a “more holistic approach” in the 1990s.

One of the major changes is that hospices were almost exclusively for patients suffering from malignant forms of cancer. Now, although cancer patients still make up a big proportion of those in palliative care, hospices house patients with a various conditions – including motor neuron diseases and heart failure – in patients aged 16 years and older.

Another is that new technologies mean that treatments for terminal illnesses are evolving all the time – so not everyone who enters a hospice dies there.

There are 32 hospice services in Ireland, with most of these offering five-day services (Dr Cunningham says 7-day-services should be the gold standard, as if something happens outside this time – “who do you ring?”)

Our Lady’s Hospice is one of the largest hospice centre, and has had a hospice on its Harold’s Cross site since the 1870s. Its on-site services include a hair salon, a therapy golden retriever Rían (which is the Irish for ‘little king’), and an oratory to host services such as christenings and weddings.

There is also a playroom for children of patients. Barbara, Our Lady’s Hospice Day Hospice Manager, says that although people might try to hide it from their children, that they do understand what’s going on.

The Irish have always been okay with death, we celebrate deaths in the form of wakes, and they’re emotional times but in Ireland we’re okay with death. It’s the dying part that people have a problem with, because they don’t know what’s coming, and wonder ‘will there be pain?’ and ‘what will happen to my family after I’m gone?’

She adds that although patients do go through the seven steps of grieving, they don’t always hit the person in that order: “Often they are perfectly accepting, and then later on they’ll get angry, and that’s fine and you have to let them”.

‘It’s very personal’

shutterstock_367441571 Source: Shutterstock/Ocskay Bence

Recently, the focus of hospice care has been on creating “a more patient-centred approach” – which means giving them and their family more choices and information over what they can do.

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Dr Cunningham, who has been working in the industry for 15 years, says:

“Care assistants, who attend to patients’ personal care such as their toiletry needs, will often be told something particularly profound by the patient. And that will be shared around the team and influence their care.”

When asked how nurses, doctors and volunteers who work at hospices deal with meeting patients who are under extreme stress, having been given the worst news, she says that it’s part of the job, and that everyone who’s here “chose to be here”:

“It can be extraordinarily sad, and there will be stories that you will take with you, but everyone is here because they want to make a difference. And if a story does affect you, usually because you can identify with a person, that’s when you tell your team and someone might say “It’s okay, I’ll take over from here”.

It’s not all sad memories that stick with you either – it’s the small moments that make people so happy – when pain is controlled, when a patient reaches a birthday, or when they get married in the hospice.

Barbara adds:

“We’re always encouraging the junior staff to talk to each other about their day, and there are therapeutic supports available – it’s very personal, very personal.”

Palliative Care Week runs from 3-8 October and aims to remind people of the services available when someone develop a life-limiting condition.

Read: ‘At the moment it’s just horrendous out there’: The challenges facing Ireland’s carers

Read: “There are worse things than dying” – how Irish medical workers deal with the final journey

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