Bringing home cancer support

Community nurses help ease the burden of chemotherapy outpatients and their carers, writes Leila Jabbour.

A new study at the Sydney Nursing School is exploring the experiences of family members and other informal carers who support people receiving chemotherapy as outpatients. Made possible in part by a donation from the Maple-Brown Family Charitable Foundation, the study is one of a number of the University of Sydney projects focusing on community care of people with cancer.

Feeling the strain

Keith Cox OAM (right) caring for a patient.

Earlier this year Ian (note: names have been changed) was prescribed a course of chemotherapy. Every three weeks he had to visit the hospital’s cancer centre for treatment, then return home to rest. Within days of his first treatment Ian began to experience nausea, vomiting and diarrhoea.

Having been warned these were likely side effects, he waited for them to subside. But over the weekend his condition deteriorated, so he and his wife, both anxious by then, decided to return to the hospital. Since Ian’s wife was elderly and smaller than he was, she wasn’t able to help him into the car. Ian ended up going to hospital by ambulance and was admitted with dehydration and a low platelet count. He spent a week there receiving replacement fluids and medication to relieve his nausea.

Lynda, another chemotherapy outpatient, was warned about possible side effects, but as neither she nor her daughter felt confident to manage these on their own, they visited the hospital whenever they felt uneasy. As Lynda’s daughter explained, “I just feel helpless at home. I tell Mum to drink more but, you know ... there’s only so much water you can drink.”

Wendy also experienced side effects from chemotherapy. Although she had been told to contact the hospital about any concerns, she resisted making the call when her condition did become serious. This put her husband in a difficult position: he felt his wife needed care but didn’t want to override her wishes. Later, Wendy was alarmed by her own lack of action. “Whether my brain had shut down I don’t know – I just felt so ill and wanted to stay in bed.”

Finding new ways to help

As if cancer wasn’t enough of a challenge, these examples show how outpatients can also struggle to navigate the health care system when they are feeling very unwell due to the side effects of treatment. And the repercussions don’t stop there.

Uncertainty at home about how to respond to troubling symptoms can cause anxiety and distress to cancer sufferers and their carers (friends, family). Medical practitioners also feel frequently frustrated by their inability to extend support to patients at home. As well, unscheduled hospital visits put stress on the health system and cost taxpayer money.

Dr Lillian Hayes, Keith Cox OAM and Dr Heather McKenzie

The University of Sydney’s new study aims to contribute to finding a solution. Led by Dr Heather McKenzie, Associate Dean (Learning and Teaching) at the Sydney Nursing School, it brings together expertise from the school, the Sydney Cancer Centre at Royal Prince Alfred Hospital, and community nurses from several area health services. Other senior researchers include Kate White, Professor of Cancer Nursing; senior lecturer Dr Lillian Hayes, biostatistician Judith Fethney, and Sydney Cancer Centre nurse practitioner Keith Cox OAM. They are all members of the Cancer Nursing Research Unit, led by Professor Kate White, a collaboration between the Cancer Institute NSW, Sydney Nursing School and Sydney Cancer Centre.

In 2006 Dr McKenzie assembled a team of researchers to investigate the role of community nurses in caring for people with cancer. A sociologist as well as an experienced community nurse, Dr McKenzie has completed a PhD on the experiences of cancer survivors, reflecting a longstanding interest in both fields. She has long been convinced that community nurses can play a significant role in outpatient care.

Such patients however, are not routinely put in touch with a community nurse unless some other aspect of their condition or circumstances calls for home care. An earlier study by Dr McKenzie and her team demonstrated that where a relationship with a community nurse did exist, the nurse played a pivotal role in the patient’s care.

Unscheduled hospital visits

The team found that some chemotherapy outpatients (like Ian, Lynda and Wendy) were struggling at home with distressing side effects but not being referred to a community health service for support. Such patients often made unscheduled presentations to hospital in an attempt to resolve their difficulties, resulting in a dual burden of distress on patients and their families, plus an extra workload for hospital staff. With this in mind, Dr McKenzie’s team began a second project to investigate the specific reasons for presentations.

They embarked on a 12-month retrospective study at a large Sydney hospital cancer centre, examining records relating to unscheduled presentations of chemotherapy outpatients. The centre treated just over 500 such patients each year, and during the year in question there were more than 250 unscheduled visits. Many visits resulted in admission for a median period of five days – a significant amount of unplanned hospital care. These findings indicated a serious area of unmet need.

A major reason why so many presentations resulted in admission was because people delayed seeking help until their side effects became severe. During interviews, the team discovered many patients had delayed seeking help because they “didn’t want to be a nuisance” or “bother” busy hospital staff. Others simply felt too unwell to even consider going to hospital.

“Patients are very carefully educated about what to expect as a side effect of treatment,” says Dr McKenzie. “So they think, ‘OK I was told there was a fair chance I would get this …’ The problem is it can be difficult for a non-health-professional to decide what is or isn’t a serious side effect requiring further medical attention.”

Early intervention

The team developed an intervention program designed to reduce the number of unexpected hospital visits and admissions. They linked a small group of chemotherapy outpatients to specially trained community nurses, who visited the patients at home during key times in their treatment program.

When participating patients visited the hospital for their first treatment, information was collected on their condition and passed on to a local community health centre. With each patient’s consent the information was also sent to their GP, to further integrate their care.

A local community nurse visited each patient at home the day after their first treatment, three days later, and once during the second treatment cycle. They checked how the patient was coping, physically and emotionally, and sent the information back to the cancer centre and the patient’s GP.

Professor Michael Boyer, Director of the Sydney Cancer Centre, believes that while unscheduled hospital visits will always happen (and need to be possible), the additional support provided by community nurses should reduce incidents. “Community support for our outpatients should prevent them from experiencing severe or adverse side effects from treatment,” he says.

Keith Cox has played a key role in developing the pilot intervention. In his work as a nurse practitioner at the Sydney Cancer Centre, he regularly sees patients who present at hospital between scheduled treatments. “The majority are acutely unwell,” he says. “They are frightened and are experiencing distressing symptoms, such as dehydration, nausea or vomiting, that they can’t cope with at home. Yet these are side effects that we can effectively manage – it’s about getting the right treatment to the patient in a timely manner.”

Dr Heather McKenzie

He welcomes the new intervention model. “When you’re first told you’ve got cancer and you need chemotherapy, it’s quite overwhelming and you don’t know what to expect. It’s very reassuring to have a nurse who visits or calls you the day after your treatment. People make a real bond with the community nurse when they’re visited in their own home.”

Patients involved in the pilot intervention agree. ”It was really comforting,” says one. “When you have chemo for the first time your mindset changes and you worry a lot more. Any little cut, ache or pain, you just freak out. You think: is the treatment killing me? Is the cancer spreading? It’s just so comforting to know that the nurse is coming and you can ask these questions.”

“These nurses develop a very finely tuned understanding of their patients,” says Dr Hayes, who has a strong clinical and research background in community health. “Because they visit patients regularly at home, they are able to closely monitor their subtly fluctuating needs – both physical and psychosocial – and respond as necessary.”

Dr McKenzie points out that GP participation is another advantage of the intervention scheme. “GPs are often out of the loop,” she says. “They may not know what treatments their parents are receiving, or what stage they are at. This model makes them more connected.”

Where to from here?

With the pilot study almost concluded, the team is now interviewing all stakeholders and refining the intervention program. It is anticipated the extra workload for community nurses will be offset by the reduced burden on the hospital system and improved patient outcomes.

To measure this more systematically, the team – which now includes oncologists, a health economist and IT specialists – is seeking funding for a much larger randomised controlled trial involving two groups of patients: one receiving the intervention and one with the standard model of care. This will enable them to clearly identify whether the intervention is a cost-effective means of achieving its dual objectives of reducing unscheduled hospital presentations and increasing patient wellbeing.

For now, Dr McKenzie and her colleagues are focusing on the experiences of the friends and family who support chemotherapy outpatients in the days following a treatment. Their aim is to identify key issues arising in the role of primary support person.

“This will provide information about an area not well understood at the moment,” says Dr McKenzie. “While there’s a lot known about how to support people caring for others in a more general context, there isn’t much, certainly in Australia, about supporting them during the ‘chemotherapy window’ of cancer treatment.”

The results of this research will no doubt be welcomed by all those who care for cancer patients. As one community nurse succinctly put it: “It’s as tough on the carer as it is on the client … a lot of them are so scared. Giving advice and reassurance to patients and their loved ones can make a huge difference. The positive impact is enormous; it’s a great thing to see.”

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