Bringing comfort to dying patients

Raising the bar on nursing

From intensive care, fertility and pediatrics to Indigenous and women’s health, the spectrum of specialist nursing areas is as varied and wonderful as the nurses behind the jobs. Specialist nursing provides nurses with an opportunity to enhance their practice and advance their careers.

In the first of a series on specialist nursing areas, The Lamp takes an inside look at palliative care nursing.

Bringing comfort to dying patients
Palliative care nurses help a lot of people to have ‘good deaths’, but there’s a lot more to this specialty than just death and dying.

At home with the television tuned to the races, Terry looks very comfortable as palliative community care CNC Anna Nicholas pays him a visit. While he has terminal cancer, Anna’s visits allow him to avoid frequent hospital visits and stay in his comfy lounge chair tuned into his favourite sport.

Anna Nicholas and five other community nurses provide community palliative care in Bankstown, caring for terminally ill patients in their homes and in hospital – she’s at the bedside when patients face their biggest step into the unknown. While death is as much a part of life as birth (and as inevitable as taxes), palliative care gets very little coverage compared to other specialties.

Anna is keen to point out that palliative care involves more than just death and dying. Palliative care nurses now start seeing patients six to 12 months before the time of their death. They have a big role in symptom management, education and liaison with GPs and primary health care nurses.

While the majority of patients have cancer, Anna says, ‘We’re seeing people with motor neurone disease and end-stage cardiac disease. It’s called chronic and complex care. It used to be that we’d see people dying, but now we see them much earlier, which is good because you have time to build rapport.’

One of the aims of palliative care is to allow people to be at their most comfortable when they die; and for many people, this means dying at home. ‘Probably 30-50 per cent of deaths we see each month are deaths at home,’ says Anna. ‘Medicine and nursing are often so hospitalised that it’s very nice that we can provide this service in the home setting. We can’t provide everything in the home, but I think people are unaware sometimes of what we can manage at home. We can actually manage a peaceful death at home, and we can manage someone on injectable medications.

‘At home they can be in their tracksuit, they can have their television, they can have their dog or cat or their grandkids around and it does normalise the process,’ says Anna.

Anna has a certificate in oncology and is currently completing her Masters in palliative care through Flinders University. While the Masters takes up a bit of time, she hopes the extra qualification will give her insights into the specialty and further enhance her career.
She decided to specialise in palliative care after working in oncology for a few years, and hasn’t looked back since. ‘As a young graduate nurse, it’s really good to be in graduate programs and get exposed to a lot of different areas. But once you’ve had that exposure, it’s very beneficial to go into a specialty. It helps you work towards best practice, which is better for you and your team, and patients feel secure with specialist nurses.’

Besides seeing terminally ill patients, nurses like Anna also build relationships with husbands, wives, children, brothers, sisters and friends of patients. Carers need to be educated and informed to be able to adequately look after their loved one and allow them to stay at home.

Caring for a dying loved one is a distressing experience itself and carers need support of their own. Practical considerations like organising a will and funeral arrangements are sometimes forgotten by people who are so busy caring for their loved one – often it’s the nurses who are the first to mention it. ‘We can offer then support or refer them to a social worker for counselling if they need it,’ says Anna.

Bankstown is a very culturally diverse area and a large portion of Anna’s patients are Vietnamese, Chinese and Lebanese. The Bankstown service has interpreters available, and some of the nurses speak Vietnamese and Chinese.

No matter where they’re from, everyone copes with death differently. But for people in their 20s, 30s and 40s, their impending death sometimes means they won’t get to see their children grow up.

‘Often with younger clients, there are a lot of emotional challenges. They’re angry, they’re sad, they’re leaving behind young children and a partner. But then someone older, who’s been married for 60 years to someone, is also very saddened to lose a partner that they’ve spent 60 years with. So you can’t judge who is more in need,’ says Anna.

‘Some people feel they’ve lived their life and are very accepting of the fact that they’re dying. Others find it very challenging and are very distressed right up until their death. But one of the challenges in palliative care would be to recognise this early on and involve social workers and try to make it less stressful for them.’

Inevitably, constantly working with dying people can get upsetting. Anna says a few tears are inevitable and natural for nurses in her position. ‘Sometimes it’s appropriate to be saddened or taken with a particular family,’ she says.

‘I think nursing has really realised the importance of debriefing, and clinical supervision, and just being open about it and talking about it helps.’

The flip side to the sadness of death is the satisfaction of helping someone have a peaceful death – a ‘good death’ – the ability to help someone feel like their life has come to a natural conclusion. ‘It’s very rewarding being able to see someone have a peaceful death, and help someone do things that are important to them, like go to a birthday or a wedding,’ Anna said. ‘It’s also an honour being invited into people’s houses and being part of their lives at the end of their life.’

It’s clear Anna has built up a good rapport with Terry as they joke together in the fading afternoon light. Terry is in good spirits and talks about a trip to the pub the other night – he’s able to lead a normal life instead of being constantly in hospital. ‘Not to criticise hospitals,’ he says, ‘but what I’ll say is, if I had the choice, rather than travel into hospital every day I would prefer to have home care.’