Breathlessness is a common, and debilitating, problem experienced by many cancer patients in the late stages of illness – especially those with lung cancer. The physical and emotional effects of breathlessness can greatly reduce quality of life.

Drugs are commonly used in this situation, but a non-pharmacological intervention developed and researched by Victoria University nursing lecturer Helen Costello, offers another means of managing cancer-related breathlessness. When the cause of breathlessness cannot be controlled through curing the disease, the patient centred-whole person approach is essential in reducing the impact of difficult breathing. This is an important element in palliative care.

"Symptom management in advanced cancer is about specialized care for the living" says Costello. "The aim is to ensure that a person with a life challenging illness has the best possible quality of life and to help that person live out each day with as much meaning as possible."

For many, controlling breathlessness is central to this aim. While drugs have their place in helping these patients, Helen says most patients are already receiving multiple drug therapy, so a non-drug intervention strategy is a very attractive option for both patients and their carers.

Helen carried out the research as part of her PhD programme. The clinical part of the research involved patients from four organisations in the greater Wellington area. Although Helen is still writing up the thesis to complete her PhD she was able to prepare a resource.

Helen explains that because the research involved clinical nurses, patients and their carers, it was always the intention to prepare a resource if the research intervention was found to benefit patients.

Quotes from the experts, who Helen considers are the patients living with breathlessness, have been used in the booklet. However she explains it has a different purpose from presenting the results in research publications that she will submit with the support of the Graduate School of Nursing and Midwifery.

"I had used all of my research funds and there was no money for publication costs. However, I knew that the motivation of many of the patients who were involved in the research was to help other people like themselves. So I applied to both the Wellington Division of the Cancer Society and the Genesis Oncology Trust for support to produce a booklet and CD to do just that."

The patients involved in the research talked to nurses about what breathlessness was like for them. "It is common for people who become breathless because of their cancer, to feel that they may not recover when breathless, says Helen. "The key to introducing and using strategies for this symptom is to understand the whole body reaction to being breathless and to work with this."

So what are these strategies?

Helen Costello explains that a healthy person is not normally conscious of breathing – it’s entirely automatic.

"So when a person with cancer-related breathlessness suddenly becomes short of breath it is a frightening experience – the brain is saying ‘more oxygen, more oxygen – breathe, breathe’. This in turn causes quicker breathing and increasing body anxiety as the breathing gets faster and less effective, and so the situation compounds. Therefore, it is important to address both the physical and psychosocial aspects of breathlessness".

The first part of the research was to observe and assess the different causes of episodes of breathlessness and meanings associated with the symptom, to document patients’ and carers’ experiences of cancer-related breathlessness. This information was used to guide the clinical approach used in the research and the information in the booklet.

Research nurses then introduced to patients and carers, an educational intervention of physical and emotional support strategies and a range of breathing control techniques aimed at reducing the work of breathing. Helen drew on information from overseas studies to develop the intervention.

She says some of the strategies are about adapting the environment and the way of managing daily activities. This also involved setting realistic goals important to assist people to maintain their functional ability.

Simple measures

"Simple things like using sitting and lying positions to help breathing, a flow of fresh air on the side of the face or a fan can ease some of the feelings associated with breathlessness."

Other breathing control techniques are physical. These include; expanding the abdominal wall during breathing in to pull down the diaphragm, breathing in through the nose and out slowly through pursed lips to make the best use of inhaled air when breathless, pacing activities such as walking or talking using learnt breathing control techniques, and balancing rest with activity.

These strategies, combined with the patients understanding of their own responses to being breathless, were used to develop a plan of action for coping with acute episodes of breathlessness that patients and their carers felt confident to use.

An important part of working with the body’s learnt response to breathlessness was to use a range of relaxation techniques that help patients effectively deal with the physical and emotional panic caused by breathlessness.

Helen worked with Linda Miller, an occupational therapist from Mary Potter Hospice, to trial different relaxation scripts prepared specifically for patients who experience breathlessness and fatigue.

"The collaborative research model meant nurses and health professionals supported the implementation of the research while community district nurses and cancer nurses evaluated it" Helen says.

The audio CD has been developed to support patients to use "self-help" relaxation skills to support a slow and relaxed breathing style. The CD is also a useful resource that can assist with whole body relaxation.

Helen says that in similar overseas research, patients were trained in the techniques for longer and attended a hospital outpatient clinic. In the Wellington study, nurses spent time with patients in their own home to validate strategies they were already using and to introduce new ways to ease their breathlessness.

"Patients are often more relaxed in their own environment and this worked well for individualising the research intervention to the person’s environment. This is the environment many choose to spend their time during the terminal phase of cancer.

"It was very pleasing that patients in the study experienced benefit after a shorter exposure to a similar treatment protocol, in their own homes. Many patients did require other medical interventions to help control their breathing problems, but these patients had an increased confidence in maintaining activities and managing episodes of difficult breathing.

"Understanding what is ‘normal’ when breathing is affected by cancer, and how to get the best out of each breath, had the effect of increasing patients’ sense of control over their breathing. Supporting patients and their carers to have a sense of control is an important aspect of palliative care which focuses on quality of life for patients".

One Wellington Cancer Centre patient who used Helen’s booklet to assist with managing his breathlessness is Harry Elmy. A former smoker, Harry had lung cancer and often found he was breathless.

"When I first started with the strategies, my illness was not too bad," said Harry. "Now I find my breathing is worse and I use the techniques quite frequently."

Harry, who lost his battle with cancer in late 2003, described himself as a mouth breather, and said he did have some difficulty training himself to breathe through his nose. However he found the techniques not hard to learn and had a positive effect.

"I am not afraid of death," said Harry. "But I am afraid of dying. Particularly of dying short of breath. I don’t worry about pain. That can be controlled and now at least I feel I have some control over my breathlessness".

"The booklet that Helen has developed is very useful and I am sure many others will benefit from using it."

The funds that Helen Costello has received from the Genesis Oncology Trust and the Cancer Society will enable the resources to be available for patients, carers and health professionals.

Copies of the booklet and CD are available from:
The Wellington Division of the Cancer Society
52 Riddiford Street
Newtown
Wellington

Phone (04) 389 8421
Fax (04) 389 5994.