Dignity, when it’s needed most

YOUR loved one is dying, in an hour or less.

Dignity, when it’s needed most

You and your family are gathered around their bed in the busy ward of an acute hospital. A TV blares, laughter erupts from visitors at the next bed, there’s loud conversation in the corridor, and down the hall a hoover buzzes.

This scenario does not honour something intensely personal and profound. Yet, according to Irish Hospice Foundation (IHF) research, 43% of us die in acute hospital settings. Seven in 10 want to die at home but — for many of us — that wish is not fulfilled.

This prompted the IHF to develop the Hospice Friendly Hospitals (HFH) programme, to bring hospice principles into hospital practice. “The primary focus in acute hospitals is on treating and curing people, not on end-of-life care. We set up the HFH programme to ensure end-of-life care becomes central to the everyday business of hospitals,” says Jackie Crinion, HFH programme manager.

The initiative raises awareness among hospital staff about end-of-life care and teaches them how to talk to patients and family. “For many staff, that’s scary. It can be awkward and off-putting to face these poignant and difficult conversations,” says Crinion.

Thirty acute hospitals and 30 community hospitals (mainly in Dublin and Cork) have signed up to the HFH programme, which provides one-day training to hospital staff, from doctors to receptionists, porters to nurses. ‘Do you think I’m dying?’ a patient might ask the tea-lady or nurse. “Staff who’ve been through the programme say that prior to training they’d have avoided the question. Now, they stop what they’re doing and sit with the patient. The question is a cue that the patient wants to have the conversation, so the staff member allows the person say what’s on their mind. It’s about training people to have a conversation, rather than training to give the right answer.”

The HFH has created a range of practical resources, such as the end-of-life spiral, a symbol displayed on bed/trolley drapes or placed on ward doors or nurse’s stations when a patient is nearing death, or has died. “It’s a signal to take out the corridor noise, to give dignity and respect to patients in their final hours, and to family, in that hour or two afterwards, when they’re coming to terms with it,” says Crinion.

There’s also a roomy, cloth hand-over bag in which belongings are returned to family. “Many of us have experienced being handed a skimpy, see-through bag with our loved one’s clothes, clean and dirty, their possessions thrown in, their wallet…. The hand-over bag is a dignified way of returning the belongings — it’s not just ‘what’s left over to put out’,” says Crinion.

At Cork’s Mercy University Hospital (MUH), 200 staff have trained in end-of-life care, while 130 have completed Final Journeys, another HFH educational initiative. “When a loved one dies in hospital, the family takes that experience with them for the rest of their lives. It’s important we support them, that the process is compassionate,” says MUH CEO, Sandra Daly.

MUH has embraced the other arm of the HFH programme, the Design & Dignity Grant scheme established to improve physical hospital environments. “We asked for exemplar projects, not just a lick of paint or tidy-up,” says Crinion, who confirms 11 projects were successful. MUH opened its redesigned, refurbished €200,000 mortuary on Good Friday, the first mortuary completed under the Design and Dignity Grants scheme.

“Traditionally, mortuaries are dark, eerie, uncomfortable. Their design didn’t fit what we now realise people need — a physically respectful, dignified space — a sanctuary away from the hospital,” says Crinion. At MUH, where 300 patients die annually, the mortuary used to be “cold, run-down, seriously in need of an upgrade”, says Daly. MUH director of nursing, Bridie O’Sullivan, says staff never encouraged relatives to go there — “it wasn’t a space we were proud of”.

The new mortuary is “inviting, serene, tranquil”. There are candles and stained-glass windows, peaceful mauve shades and wood-panelling. “It’s as cherished now as anywhere else in the hospital,” says O’Sullivan. There are two viewing areas for families, who also have space for reflection, outside in a sheltered area with a bench, water fountain and shrubbery.

“Family can spend uninterrupted time with their loved one. There’s no pressure to hurry. On a busy ward, they’d have been under more pressure to say their farewell. Here, they have space to absorb what has happened, to make their arrangements,” says Daly.

A canopy-covered area connects hospital to mortuary, so family can accompany the deceased to the mortuary. Designed as a non-denominational space, religious services, like removals, can take place here. “Before, the environment wasn’t suitable for people to feel they could host a removal. Now it is,” says Daly, adding that improvements in end-of-life care also benefit staff, who — as a result of treating patients — establish relationships with them and with families. “For staff, it’s a dignified context in which to say goodbye.” She sees the approach as an extension of values promoted by the Sisters of Mercy, who set up the hospital.

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