Last month, I interviewed Dr. Hilary Mitchell about her own experience of cancer – made all the more traumatic in that the disease was found in her tonsils, a part of the anatomy she is intimately familiar with through her work as an oral surgeon.
She was treated in the same West Country hospital where she has worked for more than twenty years, by doctors and nurses who have long been colleagues and in some cases friends.
She is full of praise for the medical staff who treated her, whom she describes as extremely caring and efficient, especially during the dark days when she was on the receiving end of a brutal combination of chemo and radiotherapy.
However, during her six months recovery time, she has had time to reflect on what could have gone better. She has four specific recommendations, which seem very relevant for all of us caught up in the experience of cancer.
Patients need to be invested in their treatment
The first is that patients need to be invested in their treatment. By this, she means being part of the decision-making process, and thus feeling in some way responsible for the outcome, good or bad. The treatment choices, with all their risks and benefits, should be presented and discussed with the patient.
By contrast, she was presented with a fait accompli – in effect told: “this is what we think you need, suck it up”.
It is often the case that a more aggressive treatment option delivers a better long-term outlook – but that might be at the price of unpleasant side-effects. Sometimes the calculus is not complicated at all, in that alternative treatments confer no real benefits when weighted up against the risk of relapse. But having the options set out, even for them to be dismissed out of hand, does mean the patient feels involved in the decision.
“When you come to reflect on the eventual outcome, you know you paid a price, but you had that discussion you knew there were risks and that the alternatives may have been worse still.”
Explain side effects in advance
The second point, is that no-one took the trouble to explain to her the probable side effects, beyond the immediate unpleasantness of the treatment.
“I wasn’t given accurate percentages of risks, I wasn’t given any advice about how the treatment and effects might impact on my job or my life in the medium and long term…and this despite being a colleague and feeling that I was treated incredibly well at the time.”
She went home after treatment and was struck by numerous side effects, some expected and some unexpected. These ranged from severe dry mouth (which is permanent and life-changing) to some deafness for which she will need hearing aids, feeling intensely cold and recurrent oral thrush (eight episodes and counting).
“Oh no, have I got this as well,” she said to herself. “I began to feel a real sense of resentment that no one had explained to me the likelihood of all this happening. I had to ask about so many things that my colleagues eventually acknowledged were a problem.”
When she checked the information in scientific articles, she discovered that some deafness and tinnitus, for example, are known to be quite common. Many of her side effects could have been anticipated, and treatment given more promptly, had she known what to look out for.
The communication deficit was especially acute in the weeks after she finished treatment, when the side effects caught up with her.
“As a patient, you’re probably getting better,” she says ruefully. “But as a human being, you’re falling to bits. ”
Many people are struck by depression when the acute phase of the disease gives way to the recognition that even if you are cured, your life has changed forever.
Offer counselling support
This is the third lesson: counselling support should be offered as a matter of course. This will help patients come to terms with the new sense of emotional vulnerability, as well as dealing with practical questions about going back to work, claiming insurance and so forth.
In well-funded private practice, that support may be available – but what is on offer from the NHS is often perfunctory.
As a doctor working within the NHS, Hilary is well placed to understand that hospitals are operating at capacity and resources are starved. But still, “I can’t understand how leaving patients to work things out for themselves or only ask when symptoms have progressed, is helpful and cost effective in the long term.”
Ask patients for feedback
The fourth lesson is that cancer teams should ask patients about their experience: what went right, and what did not go so well? The answers could feed back to improve the treatment for other patients.
It’s not just Oral Surgeons who struggle with the lack of humanity encountered at times in the Cancer pathway, it’s all patients. It is surprising that Oncologists and Cancer Surgeons don’t want to know what keeps their patients awake at night with worry, or what is the one thing they would tell another patient at the start of their journey.
Hilary is doing her bit to improve communications by writing a leaflet on post-treatment information for head and neck cancer patients, and she has the humility to recognise that she will have a good deal more understanding and empathy for her own patients when she returns to work.
Follow her four recommendations, and we will see Cancer Teams move from excellent treatment of Cancer itself, towards excellent treatment of the Cancer Patient as a whole.