Tessa Richards: My view, and that of 3980 other patients

A recent survey of cancer patients provides insight into where care is not meeting their needs—and may well reflect the situation in other serious conditions, says Tessa Richards

I usually dodge questionnaires. The only one I’ve filled in this year was from my local council seeking views on whether to keep our old village hall, or bulldoze it down and replace it with a new GP surgery. But I did accept an email invitation last year to participate in the All.Can survey of cancer patients, which sought people’s views of their care.

I did so because the questions it posed resonated with concerns I’ve had during my 15 year journey. Its recently published findings, which it shared with respondents, provide valuable insight into where care is not meeting patients’ needs.

 All.Can is an international initiative, which seeks to “identify ways to optimise use of resources in cancer care to improve patient outcomes.” Its survey was designed by Quality Health and conducted across 10 countries: the US, UK, Australia, Canada, Belgium, Poland, Italy, Sweden, France, and Spain. Respondents were mostly recruited via patient organisations and social media. Questions focused on patients’ experience from diagnosis onwards.

Questionnaire surveys don’t rank high in the evidence hierarchy, and although the methodology is described well, there is scant analysis of its limitations. The majority of the 3981 respondents were middle aged women, and most had breast cancer. Response rates bore no relation to the size of the country. How come Poland contributed 29% of the total? The report concludes that the main concerns patients raised—diagnostic delays, lack of shared decision making, poor provision of information, and financial hardship—align and reinforce findings from previous surveys. It also illustrates the value of collecting quantitative and qualitative data on patient experience at scale.

Delayed diagnosis

A quarter of respondents reported diagnostic delays and misdiagnoses. These hugely important problems are well recognised. The causes are complex. The fact that the conditions grouped under the “cancer” umbrella are so varied adds to the problem. A recent useful analysis concludes that policy changes to reduce diagnostic delay need to go well beyond focusing on professional performance

I readily admit to playing a part in my own diagnostic delay. I downplayed symptoms, “sat” on abnormal physical signs, and didn’t make a fuss when my GP did much the same. When my anxiety reached a head, my recourse was to seek advice from a consultant physician who a colleague recommended. This is not an option open to many patients, although surely all should have a right to a second opinion?

Lack of  involvement in decision making

The headline finding of the survey was that close to half of the respondents said they would have liked to be more involved with deciding which treatment options were best for them. Progress with implementing shared decision making remains slow in most countries. The reasons include lack of time, skills, tools, leadership, and resources. Patients were not asked for ideas on how to do better. Had they been I’d have been first off the block to say, “don’t make decisions about best management for us if we (or someone who knows us well and is aware of our priorities and preferences) is not in the room.” And I’d have included a link to an article I wrote, in sorrow and anger, about multidisciplinary meetings and my experience of being excluded from the decision making process.

People seek empathy and timely, understandable information

Better sharing of “understandable” information about their cancer was another strong call. Patients also reported being “overwhelmed” by being given a lot of information at a single visit. My surreal experience of this was when my cancer recurred for the fourth time. The oncologist ran through medical options and invited me to take advantage of getting an opinion from the surgeon next door. The surgeon rehearsed heroic surgical options, and urged me to make up my mind fast because the operative window was short. If the surgery was unsuccessful, the “good thing” was I would not languish. “X, Y, Z” complications (I did not take them in) would likely result in death within three days. (I did take that in.) He then got out his smartphone and ran through a list of cutting edge trials of new therapies. I heard nothing. The words “dead in three days” were reverberating in my head.

Poor practice in communicating bad news and lack of empathy were also flagged by survey respondents and the former is surely easy to addressnot least through medical education. The direct quotes are telling: “Nothing would have changed the diagnosis, but the way I was treated and lack of communication made a difficult time horribly upsetting for me, my friends, and family.” 

Patients hugely value caring health professionals as well as competent care. I’ll certainly not forget the sensitivity and kindness of the consultant who diagnosed my cancer. He listened attentively to my history, did a thorough physical examination (I find this rare these days), and then arranged urgent tests. Within hours he was lucidly and gently explaining that I had an invasive, life threatening adrenal tumour, and he was getting the best possible surgical team together to try and remove it. 

He offered to follow me up after surgery too. He made no bones about the fact that he was “a hypertension doctor, not a cancer specialist,” but he clearly recognised my need for ongoing support to cope with the physical and mental side effects of treatment—something many respondents in the All.Can survey identified as an unmet need. Visits to his outpatients helped me through dark days. He also took on the task of coordinating my care (an issue raised as important by many patients in the survey) when other medical conditions and metastatic disease saw me ricocheting between oncologists, radiotherapists, endocrinologists, and surgeons. When he left the hospital I was bereft. I have since sought but not found a doctor to take on his mantle. I wish I had told him what a difference he made to my life.

Money matters

The financial impact of getting a cancer diagnosis was another big concern for many patients and it’s often poorly recognised by health professionals. Patients cited lost income from being off work, higher insurance premiums, cost of travel to clinics, difficulty getting loans, and having to pay someone else to take on former caring roles. I regularly read harrowing Facebook posts from fellow patients in the international cancer patient community I belong to. Calls for advice and help from people who can’t afford treatment, or who live in countries which don’t provide it, illustrate starkly how inequitable access to effective, affordable care is. 

This inequity is not, of course, confined to cancer patients, although this group gets the lion’s share of attention. And my final thought about the All.Can survey stems from this observation. Would a comparable survey of people with other serious and long term conditions—many of which throw a burden on patients and carers that is just as great as cancer—produce similar results? Sadly, I bet it would.

Tessa Richards, The BMJ. You can follow her on Twitter @tessajlrichards

Competing interests: None declared.