Monthly Archives: December 2016

A pacifist’s guide to the war on cancer

Peter McIntyre

Peter McIntyre

I went to a musical… about cancer. A Pacifist’s Guide to the War on Cancer was given the song and dance treatment by Complicite Associates and the National Theatre in the UK where has played to packed audiences in Manchester, Exeter and London.

An anguished mother is trapped in an oncology waiting room as her baby undergoes tests. Patients come and go but, unable to leave, the mother moves from denial to bewilderment, despair and acceptance.

A bundle of tcancer cell_Francesca Millsumour cells appears like a rubber toy to give a quick teach-in on how cancers grow; later, inflatable tumours crowd the stage.

This may not sound like entertainment but A Pacifist’s Guide has laughter and defiance, good songs, fantastic dancing as well as very dark moments. None darker than when mother and audience sit for fully two minutes while we are all stunned by the sound of an MRI scan at full volume.

The script by Bryony Kimmings and Brian Lobol reflects the Susan Sontag assessment of illness as metaphor where everyone “holds dual citizenship, in the kingdom of the well and in the kingdom of the sick”. Both authors were committed to avoiding a ‘happy’ or ‘sad’ ending.

Lobel has been writing about cancer ever since he was cured of testicular cancer. “Most people are focused on going ‘back to normal’ and I realised that there is no normal. I was never normal to begin with but I certainly did not go back to being normal.”

Kimmings was interested in why cancer has so many warlike metaphors. ”Cancer seems to have a battle because it is much more terrifying to think that your body turns against you and that you have no control over it.” She sees A Pacifist’s Guide as a plea for greater honesty and understanding. “A common misconception is that it is going to be dramatic. Actually it is a very slow and boring and lonely and all over the place.”

The run of this high octane show is over but Complicite and the National Theatre are discussing if it will continue in some form. It would be good if the show could evolve so that patient outcomes are less detached from treatment options. Currently, its most powerful song presents cancer simply as fate:

“Fingers crossed; make a wish;

“What gruesome game of chance is this?”

It would also have been good to explore the relationship between health professionals and patients and the ability of patients and advocates to bring about change.

My overall feeling however was very positive. Cancer should be on the stage. Let’s keep making a song and dance about it.

Online you can watch authors and cancer patients answering questions such as What is the worst cancer-related advice you’ve ever heard? Start at the Complicite YouTube site

There is also linked site where you can join in a discussion of the issues.

Risks and benefits – what do we patients have a right to know?

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

The principle of informed consent is supposed to safeguard our rights as patients to accept or reject a proposed medical treatment on the basis of an understanding about the risks and benefits it offers.

There are big variations, however, in how it is put into practice, which may impact on the decisions patients take regarding, for instance, when to stop chemotherapy.

Last year, a Supreme Court judgement in a medical negligence case (Montgomery v Lanarkshire Health Board) updated what informed consent means in the UK, effectively bringing it more into line with the principle of shared decision making, by giving legal weight to the patient’s concerns and priorities.

Doctors must now ensure that patients are aware of any “material risks” involved in a proposed treatment, and of reasonable alternatives, with the legal test of what constitutes a material risk being decided by “whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk… or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.”

The Court spelt out that the duty to assess whether a patient would regard certain information as significant requires doctors to engage in a dialogue with their patients, and that it is not up to the doctor to make assumptions about how a patient would rate the significance of any given risk, no matter how small.

Information on quality of life

What does this mean in practice for cancer patients? Taking the example of decisions on taking chemotherapy, whether the intent is curative or palliative, doctors offering this treatment must be able to provide information about the impact on quality of life and prognosis.

A risk to quality of life can be as significant to a patient as any medical risk.  But while doctors have always been required to make information on medical risk explicit in the consultation, information about how patients experience impact on quality of life, presented in lay language, is often missing.

In the light of the Temel study of palliative care in patients with incurable non-small-cell lung cancer – which found that patients offered palliative care soon after their diagnosis tended to have less chemotherapy and yet lived longer – a failure by the profession to address this information gap could be regarded as some kind of professional conspiracy.

Information on prognosis

A recent Dutch study into making decisions about chemotherapy treatment indicates that doctors need also to be much clearer in informing patients about the extent of benefit they can expect. The study asked patients (including patients with terminal prognoses) about the levels of benefit (chance of cure, additional months, symptom relief) they would require to accept mild or intensive chemotherapy regimens. The responses, on average, indicated they would expect high levels of benefits  “beyond what is realistically achievable”.

Following completion of the questionnaire, all the cancer patients in the study went on to receive chemotherapy, despite the likelihood of benefit being in most cases below their stated minimum threshold, suggesting the majority entered treatment with unrealistic expectations, which raises questions about what information they were given and how.

The study went on to explore the reasons for the lack of realism among patients. It raised concerns about the quality of communication between patients and doctors, and it pointed to an earlier Dutch study which looked at collusion in doctor-patient communication about imminent death, and indicated that social attitudes such as “not giving up” reinforce unrealistic expectations and thus acceptance of toxic therapy.

A study of English data published in August offers an interesting addition to our insight on the overuse of toxic therapies in patients who do not stand to benefit. It looked at the use of Systemic Anti-Cancer Therapy (chemotherapy) in breast and non-small-cell lung cancer patients in England in 2014. The patients were divided into two groups, those treated with curative intent and those for whom the treatment was “palliative”, ie it could delay not cure the cancer. They analysed the outcomes for a total of 23,228 patients with breast cancer and 9,634 patients with non-small cell lung cancer in the two groups, and how many of these patients died within 30 days of their last chemotherapy treatment.

In the palliative care group 1289 (8.4%) died within 30 days, while in the curative group 0.3% of the breast cancer patients and 2.7% of the NSCLC patients died within 30 days. There is no evidence that the deaths are clustered, so it is reasonable to assume that practice standards are similar among all the providers although the authors highlighted a small group of outliers.

Patient reported outcomes measures

Where does this leave our rights to accurate information by which to decide on whether or not to accept chemotherapy, particularly in a palliative setting?

I think we need a rapid and comprehensive adoption of patient reported outcome measurements in oncology care, aimed at providing reliable evidence-based descriptions of the impact of systemic treatment on life quality and on the prognostic pathway.

Where is the research on what cancer patients see as significant risk? None of the existing quality-of-life tools are adequate – apart from anything else they measure a researcher’s view of the criteria that matter, not a patient view.

Only through patient-reported outcomes data, effectively communicated, can we reduce the number of patients having their last days affected by toxicity. Using patient reported data could also help doctors break the “collusion” reported in the study from the Netherlands. And in countries like the UK, where patients’ rights to information they consider significant is now enshrined in law, we might also avoid a situation where doctors could be taken to court.