Health budgets need to allow more time for nurses to spend time caring for the psychological needs of patients with cancer, not just their physical needs, a PhD research project through Southern Cross University (SCU) has found.
Catherine Jones, who has been in charge of the oncology ward at the Royal Hobart Hospital in Tasmania for the past 22 years, recently completed her PhD ‘Realising mortality: experiences of 20 people with recurrent cancer’, through SCU's School of Nursing in Lismore.
“One of the issues that arose is the need to build into a nurse’s working day enough nursing hours to recognise and address the need for psychological care of people living with cancer,” said Dr Jones, who was supervised by Professor Bev Taylor.
“It's never been recognised and appreciated as something that nurses do,” she said. “There are limited health dollars, and when they calculate how many nursing hours per bed day per patient to allow, they only take into account the clinical side of things: specific tasks such as hygiene, medications, and dressings.
“There isn't time allocated for talking with patients in a way that allows them to tell their story, as the participants did for me for my research. The participants described this as very cathartic and validating of their experience. Many commented on how they were relieved to have their say...some said they felt like a weight had been lifted.”
Dr Jones, who has been nursing since 1971, said she was often present when doctors told patients the bad news about their cancer recurrence and dwindling treatment options, but was unsure if the support and care offered was appropriate and sufficient.
“I always try to say the right thing and try to be supportive, but it occurred to me, how do we know if we're giving the right support at the right time?”
She interviewed 20 people with recurrent cancer for her research project, aged from their early 30s to 70, with three quarters of them being women. She asked participants to tell her of their experience of living with recurrent cancer and impact upon them. She found several themes emerged:
1) First reactions to the diagnosis of recurrent cancer: feelings of shock, sometimes anger, but quite often a sense of grief based on the understanding that life is indeed finite;
2) Being lost - becoming humble: feeling a loss of identity and loss of sense of self, losing independence and needing others, loneliness, lost friendships, the stigma associated with having cancer, and lost future, dreams and aspirations;
3) Preparing for an unknown future: planning the funeral, leaving legacies and worrying over others, and contemplating death;
4) Living with uncertainty - coping with limitations: including accepting a life with limitations, and adjusting to a different way of living; and
5) Discovering the meaning in life.
“Being faced with death often led people to re-evaluate what was important in life,” Dr Jones said. “People found meaning in personal spiritual or religious beliefs, the wonder of nature, the person’s own value system, and in relationships with family and friends. The news of the recurrent cancer often lead them to reunite with estranged family members or family members overseas, or sometimes even with their former spouses if they were divorced.”
One woman, a grandmother, spoke of valuing her relationship with her husband more after her diagnosis, and of the time she spent in the garden as meaningful and peaceful.
“One has to think about what's important and make the most of life,” she said. “I don't mean going out and madly indulging and spending big or anything, but it's a reminder generally to appreciate things. It also means that one gets irritated a bit because people carry on about, what you realise, are minor things.
“I think of wanting to live this year in the garden. Because we had a wet summer, there's been a lot of things going to seed. I have this feeling of wanting to live long enough to see what those seeds come to and what they grow up to.”
Another participant, a mother of teenage children whose death was imminent, spoke of her fear of going on an unknown journey.
“All of the time I think about death's nearness, I'm aware this could be the last breath, the last day or the last night.
“I'm frightened of going on an unknown journey with an unknown destination. I wouldn't go on a journey without planning and pre-booking and all that, so I think that I'm going on this journey without any arrangements and I worry about that. I guess it’s the uncertainty of leaving this world that you know, of leaving a house and a place and a timetable and a routine that flows, to go to something unknown.”
A single parent who had always lived cautiously and made sure she had enough money to pay the bills, said having cancer had changed her view on life.
“Get any new experiences while you're there. Don't say ‘I'll do that later’, because later will be too late, you won't be there and it won't come up again. Nothing will ever happen as it's going to happen on that day ever again.”
For more information contact Sara Crowe or Kath Duncan, Media Liaison, Southern Cross University Ph: 02 6620 3144.