Stories of the music of hope

We all have hopes and dreams. For people affected by cancer, these can be even more vivid. I (L R M) have seen many people who have taught me about the power of hope and the value of asking “What are you hoping for?”

I was looking forward to playing in the next concert of the Corpus Medicorum (the chamber orchestra of the Australian Doctors Orchestra), but worried about how difficult my part looked. Then I heard that our soloist only had one lung! Sue, a professional tuba player and a non-smoker, was diagnosed with an aggressive lung cancer for which the treatment was a left pneumonectomy. Her surgeon, Phillip (P A), who happened to be a talented viola player, ran the Corpus Medicorum as a hobby, and could imagine what it might be like never to be able to play music again. No one knew if Sue would be able to play her tuba after surgery. She described how Phillip had made a deal with her; “If you can play afterwards, when you are well, you will come and play a concerto with my orchestra.”

The night before her surgery she was still playing at 4 am, “in case this was the last time”. The day she got home from hospital, she waited until her family had tucked her into bed and left. Then she gingerly picked up her tuba, which weighed over 10 kg, and proved to herself that she could still play a single octave scale, if not very well.

Eighteen months later, after four cycles of adjuvant chemotherapy and much hard work, Sue kept her side of the bargain: she played the very difficult three-movement tuba concerto by Vaughan-Williams brilliantly, sitting alongside Phillip as principal viola. As I played my clarinet, my thoughts strayed to the bassoon player I often sat next to in the orchestra. I hoped he might be inspired to stop smoking, instead of telling me he didn’t need to because he drank green tea.

Our usual much-loved conductor of the orchestra had not been able to conduct, but was hoping to be able to come to the concert, since he had chosen the music and written the program notes. At 81, he had recovered from lymphoma but myelodysplasia was now robbing him of his energy, and he required regular blood transfusions. Everyone was delighted that he made it to the concert, sat in the front row, and got up and told the audience why and how he had constructed the program. He reduced us to tears of laughter by singing a folk song from his English childhood, “Training to be a village idiot”. He died just 2 months later.

Many people describe how overwhelming and frightening it is to come into the cancer treatment centre for the first time and see so many sick people. But, over time, they come to appreciate that we are all in it together, with each person having their own stories of hopes and dreams. Health professionals often feel frustrated by patients and families whose hopes appear unrealistic, particularly the refusal to contemplate that the end of their life may be near.

It is important to distinguish between hope and optimism. Hope has been defined as “a process of anticipation that involved the interaction of thinking, acting, feeling and relating, and is directed towards a future fulfilment that is personally meaningful”.1 Hope can be either generalised (with no specific goal) or particular (directed towards a specific goal), for example, our conductor hoping to be well enough to attend our concert.1

In contrast, optimism refers to having a generally positive outlook on life or “viewing the glass as half full”. The distinction between optimism and hope is that of agency — exerting control over one’s future. The classic definition of dispositional optimism is having a global expectation that good things will be plentiful in the future and bad things scarce. Optimistic individuals believe that their goals can be achieved in the face of adversity and will continue to try to attain the goals, but pessimistic individuals are more likely to give up.2

We know that the psychological coping style of people diagnosed with cancer is not associated with survival or recurrence rates.3-5 But this is not what people want to hear. The study by Schofield and colleagues demonstrating that a person’s level of optimism had no impact on their survival from locally advanced lung cancer attracted hate mail from patients around the world.4 When people with metastatic colorectal cancer on a phase III clinical trial were surveyed, neither the levels of hope nor optimism had any impact on overall or progression-free survival times, but those with high depression scores had significantly worse survival times.5 Other studies have suggested that lower optimism levels are significant predictors of anxiety and depression in patients with ovarian cancer and their caregivers.6

These studies are not intended to destroy hope, as some of the hate mail suggested. We know that maintaining some hope is very important to patients with cancer, but it is reassuring to be able to tell a distressed patient that they don’t need to be positive all the time. Having a bad day or a cry will not make the cancer grow faster. Patients can also be reassured that they need not feel guilty if they are not naturally optimistic, but depression needs to be detected and treated.

We also know that the level of optimism among doctors varies. Perhaps not surprisingly, a study by Jennens and colleagues, which assessed knowledge about the benefits of palliative chemotherapy for metastatic lung cancer among doctors, showed that respiratory physicians were more like to be pessimistic about outcomes with chemotherapy, and medical oncologists were more likely to be optimistic.7 Oncologists need to be aware of their own levels of dispositional optimism and try to present a balanced view.

It is important to be aware that patients with unrealistic levels of optimism, such as that displayed by our bassoon player, may be more likely to participate in risky behaviours, such as continuing to smoke after cancer treatment. Some studies also report that patients and caregivers may defer palliative care or refuse “do-not-resuscitate” orders because they equate this with giving up hope. Higher levels of hope and optimism are also reported to correlate with positive psychological changes or “post-traumatic personal growth” following a diagnosis of cancer.1

A desire to maintain hope and optimism are also described as powerful motivators to participate in phase I clinical trials, even when the chance of therapeutic benefit is low. While it is essential to ascertain that patients have sufficient understanding to give informed consent to participate in a trial, it is also important to respect that, for some people, part of their expression of optimism and hope is belief in a high chance of personal benefit. One study suggests that phase I participants with high levels of treatment-specific optimism have fewer symptoms of depression at the beginning and the end of treatment.8

Part of the art of oncology is to help people maintain hope about achieving goals that are important to them but also realistic; to hope for the best-case scenario but have a plan for the worst-case scenario. The recent model suggested by Kiely and colleagues is a useful tool for helping oncologists discuss potential survival times with specific treatment regimens in advanced cancer, in a way that is realistic but maintains hope.9 They found from an analysis of randomised controlled trials in metastatic breast cancer that the worst-case scenario for survival could be simply approximated as one-quarter of the median survival time reported in the trial, and the best-case scenario as more than three to four times the median.

For some, like Sue the tuba player, playing music will be a goal in itself, but there are broader benefits. It has been shown that listening to music causes dopamine release onto the nucleus accumbens, an area classically thought to mediate reward perception and addiction. A recent review found that music interventions may have beneficial effects on anxiety, pain, mood and quality of life in people with cancer, and small beneficial effects on heart rate, respiratory rate and blood pressure were identified.10

When caring for people with cancer, a willingness to be flexible, to listen and to encourage realistic hopes can be just as important and rewarding as giving the right treatment to the right person at the right time. Be prepared whenever appropriate to do things like rearrange the chemotherapy dates to fit around special events and holidays. Encourage people to go out and live life as best they can, despite their cancer. Treat people as you would hope to be treated, and you will not go far wrong.