Thursday 15 November 2018

'Money, work, family, friends: the same things keep coming up' - Irish nurse on the regrets of people on their deathbed

Night nurses provide crucial support in the final hours of a patient’s life at home. The job is challenging but enriching, hears Tanya Sweeney

Night nurse Mary Kavanagh:
Night nurse Mary Kavanagh: "We fall into the routine of the patient". Photo: Colin O'Riordan

Tanya Sweeney

To the uninitiated, Caroline Webb's job may feel like a hugely difficult, almost unpleasant one. And even to Meath-based Caroline herself, the idea of returning to work as a night nurse, after years of working in other sectors, gave her slight pause for thought initially.

Caroline qualified as a nurse originally in 1991, but explored different career paths before a friend working in hospice care told her three years ago of a night nurse job available through the Irish Cancer Society.

"I first thought, 'not a hope, I couldn't go back into nursing again'," she admits. "But since I got the job, I haven't looked back. I can barely tell you how important, and how rewarding, this work is."

In fact, speak to any of the night nurses who work alongside the Irish Cancer Society, and they are unanimous on one thing. Despite working in various outposts of nursing and care, this work is among the most profound and enriching jobs they have ever had.

That's not to say that the work is easy. Night nurses tend to work an 11pm-7am shift in the home of a patient requiring end-of-life care. Everyone in the country, irrespective of location or financial circumstance, is entitled to 10 nights of care via the Irish Cancer Society (the service is accessed through the patient's palliative home care team, or GP). The night nurse then feeds information back to the palliative care team to ensure continuity in care.

Chief among the nurses' duties is to address the needs of the patient, from pain management and symptom control, and, where possible, ensure a pain-free and dignified death.

Often, the nurse on duty can end up talking with the patient on their deathbed in the quiet of nighttime.

"Usually, the same regrets keep coming up," explains Webb. "They regret not keeping up contact with family and friends, not living life in the moment, and being worried about money when they have no need to worry about money.

"Sometimes a patient will ask us if they are going to die," she adds. "We have to be quite truthful with people if they ask us. Often we say, 'what do you think yourself?' How do you feel?'

"In a lot of cases, they're either testing us, or they realise that something is going to happen. We have to say to the family too, if the person isn't already aware that they are going to die, and they ask us about it, we have to answer truthfully."

As one of the most emotionally heightened and sensitive outposts of the nursing profession, plenty of compassion, emotional intelligence and tact is required for the job at hand. Life experience - and often, prior experience with loss - might also put a nurse at an advantage.

"I honestly don't think really young people would be able for this," observes Webb. "I don't think someone in their twenties could walk into this situation and know what to say, or more importantly, what not to say.

"I've experienced the death of my own mam, and you know that people are so shocked when death finally does happen. You can relate to them and somehow tell them, without really saying it outright, that you've been though this yourself and can understand completely."

Night nurses are there to provide support, reassurance and guidance to family members in their darkest moments.

"It's an holistic, multi-faceted approach that we use," says Lucan-based Mary Kavanagh, who has been a night nurse for a year.

"If you go into a home, it's not like, 'Superwoman or Superman is here'. We are doing things their way, and while a patient in hospital might need to fall into the routine of the ward, we fall into the routine of the patient. What I hope I achieve is to take the fear of dying and death away from the family and the patient."

Though family members are only too happy to carry out the final wish of their loved one to die at home, looking after a dying patient outside of a hospital setting is daunting, and often harder than anyone could have anticipated.

"Most people want to be at home for their final days," says Kavanagh. "After all, where is our favourite place to be, only with our own family and our own animals? Still, it's a huge decision for a family, and what we offer is, they say, an invaluable service."

When Sylvia Coyle spent her final days in the family home in Kildare surrounded by loved ones, the family benefited greatly from the Irish Cancer Society Night Nurse service.

"It was mum's wish to stay at home with us and the Irish Cancer Society's Night Nurse enabled her to do that," says Sylvia's daughter, Alison.

"As well as caring for her, our night nurse Geraldine talked to mum about her worries, which was a great comfort to her. Geraldine looked after the whole family - guiding us through a very difficult situation. She was invaluable to us. This is a vital service for any cancer patient who wants to be at home during their final days - we simply couldn't have managed without it."

Only when the nurses pass the threshold of the house do they know how the shift will unfold. Sometimes, the house can be packed with extended family and neighbours. Other times, the patient might have been in discomfort for many hours.

"Very often, you'll see the sheer relief on a family member's face when you get to the door," says Louth-based Carol Adams, who has worked in nursing for 25 years. "They're just so happy that someone can care for their loved one, and they might be able to get the rest needed to function for the next few days. The families we work with are so resilient and strong for their loved one. The love of a family in this situation is truly amazing to witness. It's very special."

Many people hope for, and often expect, a peaceful death for their loved one. Unfortunately, reality can get in the way, and a person's final days can often be fraught with shock and unexpected upset. It can lead to challenging moments for everyone involved.

"One very distressing thing that can happen is what we call 'terminal agitation'," explains Webb. "It can happen with very young people when they don't want to die and they fight with everything they can. They won't settle and often have to be sedated. It can be very upsetting."

Maynooth-based night nurse Emer McGearty says that trying to encourage a peaceful and relaxing environment in the home can help with the unexpected agitation of patients.

"It can be very shocking for a family to witness that," she agrees. "You don't want their last memories to be of their loved one being so unsettled. You want their memories of them being relaxed and at ease."

"The other thing that can be challenging is when family members may not be on the same wavelength as we would be about things like medication," notes Webb.

"You might also be dealing with family dynamics and it can create a bit of tension. In this case, as a nurse, you can't take part and you can't take sides."

McGearty says that a good night nurse will need to be in the right frame of mind heading into a shift.

"You have to leave personal or family issues at the door and make yourself totally available for the family and the patient," she says. "Likewise, you need to be able to switch off after a shift and to not bring it home with you."

Yet naturally, some patients linger on in the memory.

"Every case is sad, but it's particularly sad if it's a young person, or a young person with young children," notes McGearty. "One or two people really stick in my mind - there was one young man in his twenties who had a toddler, and another lady my age with breast cancer, who had children the same ages as my own.

"You also hear a lot of people who were in good health their whole lives, and maybe put off having a holiday or travelling until retirement, but were diagnosed with cancer soon after they retired. It does put everything into perspective, and make you really appreciate what you have."

The service is funded almost entirely by public donations to the Irish Cancer Society. Boots Ireland and the Irish Cancer Society have recently launched their annual '5K Walks for Night Nurses', taking place in Dublin and Cork on August 17.

To date, Boots employees and customers have raised over €1.3m to fund the service, which adds up to over 3,715 nights of nursing care for families around the country.

In 2016, the initiative introduced Honour Tags, which are on sale in Boots stores for €2. Customers can purchase a tag in honour of someone who has passed away from or survived cancer. "The service really isn't there without the help of the public," says Kavanagh. "At the time my father passed away, I didn't know the service was available, and I really wish we had."

* For further information about the Irish Cancer Society Night Nursing service or to donate, visit cancer.ie

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