Sunday 25 August 2019

Working to ease the pain of passing

Our hospitals are learning from the mistakes of the past and improving how they deal with a patient's final days and the bereaved families left behind. Many have signed up to the Friendly Hospitals Programme, a framework to ensure world-class palliative care and family support in specially-designed facilities.

Ann Hayes, development coordinator for end-of-life care, at Sligo University Hospital. Pic James Connolly
Ann Hayes, development coordinator for end-of-life care, at Sligo University Hospital. Pic James Connolly
Katie Byrne

Katie Byrne

Losing a loved one is never easy, but the pioneering Hospice Friendly Hospitals programme, now in its 10th year, makes it a little easier to bear. Those coping with the loss of a loved one tend not to remember the finer details of the hospital experience; yet they never forget if their loved one's last days weren't handled with the respect and reverence they deserved.

That was one of the key takeaways when, in 2008, the Hospice Friendly Hospitals Programme commissioned the National Audit of End-of-Life Care in Hospitals in Ireland - the first of its kind in the EU.

The report, which was published in 2010, collected data on the end-of-life experiences of 1,000 patients who died in acute and community hospitals from the perspectives of nurses, doctors and relatives, and it highlighted considerable shortcomings.

"Although there were pockets of very good care in some hospitals," says Margaret McKiernan, chair of Hospice Friendly Hospitals, "what was evident was that it wasn't consistent.

"There were big gaps around infrastructure - spaces where people could be brought if they were getting bad news, or just spaces where they could go if they needed time alone.

"A lot of the mortuaries would have been very functional spaces," she adds. "They wouldn't have been places that you would have wanted to bring families."

The findings from the audit helped HFH, in partnership with the HSE, identify areas where end-of-life care was lacking, and the programme introduced a number of new initiatives on the back of it.

The programme wasn't embraced immediately, though. "Anything new can be a hard sell, culturally, in an organisation," admits McKiernan, "and while some members of staff were willing to embrace it, there was still suspicion out there and, I suppose, a little bit of resistance."

The national roll-out of the programme - coupled with the feedback from bereaved families - has since helped to allay those doubts. Forty-eight hospitals across the country have now incorporated HFH principles into their practices. Twenty of these hospitals have access to end-of-life care coordinators, and €11.5m has been invested to date.

Ann Hayes, development coordinator for end-of-life care, and former clinical nurse manager in oncology, has seen the benefits of the programme first-hand at Sligo University Hospital.

"At the time [of the audit], Sligo University Hospital would have fared as one of the poorest in the country in relation to facilities for bereaved relatives," she explains.

Following the audit, the hospital received a Design & Dignity grant, co-funded by the Irish Hospice Foundation and the HSE, to improve the mortuary facility. The new building went on to win a National Healthcare award in 2016.

"The family bereavement rooms beside the mortuary have made the biggest difference to the hospital in dealing with end-of-life and bereavement," she says.

The first mortuary project to be completed under the Design & Dignity scheme was at the Mercy University Hospital in Cork, where McKiernan is the director of nursing.

"It was a transformative project for our hospital," she says. "Previously, you would have been walking with families past a waste compacter: it was a very bleak, functional area where post-mortems would have been carried out at one time.

"Now we have a protective corridor when you're on your way down to the mortuary - it's bright, it's airy, it's peaceful and it made a huge difference to staff as it gave them a great sense of pride to be able to bring people into this space.

"The environment that you're in isn't everything," she adds, "but it's certainly a contributing factor at that particular time."

Hayes, who has a Diploma in Bereavement and is currently completing an MSc in Bereavement Studies, has helped to introduced a number of other end-of-life initiatives at Sligo University Hospital - some before the HFH programme was rolled out.

While managing the oncology unit, she introduced a sympathy card for bereaved families; in later years, she won a National Healthcare Department Initiative Award for introducing 'Keepsake Quilts' for bereaved parents. "Research shows that holding something tactile is very comforting at this time," she explains.

More recently, she has been helping to incorporate the National Maternity Bereavement Standards at the hospital. "We delivered an education day for midwives and staff around maternal loss, and we have a grant from HFH to support that continued education," she says.

The way in which belongings were handed back to bereaved relatives was another concern that came to the fore through the end-of-life audit.

"It's one thing to manage a situation with someone who is naturally upset but it's another thing if they are put in a situation where they are having to give people property back in a plastic bag because that's all we have," says McKiernan.

"It doesn't send out a respectful message.

"And if we get it wrong, it can be so hard for people who are stuck afterwards."

HFH has a high-quality, specially designed bag for this purpose, which, says Marie Lynch, Irish Hospice Foundation head of healthcare programmes, "promotes a dignified and sensitive way of returning the deceased patient's personal belongings to the family".

The bags are decorated with the end-of-life symbol, which was introduced to hospital settings as part of the HFH programme.

"The symbol has its roots both in Christian and non-Christian beliefs," explains McKiernan. "It's an ancient symbol seen in places like Newgrange. It's a connection back to a deeper spirituality that isn't just about religion.

"What a lot of hospitals have done, including ours, is that they have put up a little information piece on the symbol as you come into the hospital or on a notice board," she continues.

"It's very visible and very distinctive and people often ask about it when they see it for the first time.

"The purple drape that goes over mortuary trolleys is also very distinctive, and you'll find that people will step back on the corridor or come out of the lift to allow you to be alone," she adds.

"There is a sense of ceremony about it: people realise that something important and significant has happened."

Healthcare professionals in Queensland, Australia, recently followed Ireland's lead and developed their own end-of-life symbol and handover bag.

Wendy Pearse from Sunshine Coast Hospital and Health Service's (SCHHS) End-of-Life Care Committee said she learned about HFH on social media.

"After being inspired by the Irish programme, we developed an Australian take on handover bags and a few other resources," she explains. "The aim of the handover bags is to convey to the family and staff that whilst the person was a patient with us, we cared for them and respected them."

The handover bag, like the other HFH initiatives, brings compassion to a practice that was considered to be cold and clinical. And it's just one of the many little touches that makes a huge difference, says Sandra Hannan, a clinical nurse manager based in Limerick, whose mother passed away in University Hospital Limerick in January 2014.

The hospital joined the Hospice Friendly Hospital Programme six years previously, and Hannan says the hospice principles promoted at the hospital made a deeply traumatic experience a little bit easier to bear.

"The care my Mam received; the dignity she was shown; the privacy she was given. Deep conversations were held at 3am, 4am, 5am... time was no obstacle.

"When Mam was near the end, a crowd of friends and family had gathered in the waiting room: they too were allowed to be with her in the room when she took her final breaths. It was exactly what my Mam would have wanted."

A few weeks later, the Hannan family received a condolence card from the pastoral care team in University Hospital Limerick. HFH advises participating hospitals to send a sympathy card to bereaved families before they post a bill.

It was a small, yet meaningful, gesture that the Hannan family will always remember. And that, says McKiernan, is one of the HFH programme's primary goals. "You really only get one chance to get this right," she says, "so it's important that it's done well."

THE hospice END OF LIFE SYMBOL

* This symbol has been developed by the Hospice Friendly Hospitals Programme (HFH) to respectfully identify items connected with the end of life. The symbol is inspired by ancient Irish history and is not associated with any one religion or denomination.

The spiral can be explained as follows:

• The 3-stranded white spiral represents the interconnected cycle of life - birth, life and death.

• The white outer circle represents continuity, infinity and completion.

• Purple was chosen as the background colour as it is associated with nobility, solemnity and spirituality.

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