The experience of someone with cancer is a litmus test of a country’s healthcare system. Let me explain:
The symptoms of many cancers are very like those of many more benign conditions. Take colorectal (bowel) cancer. People who develop this disease present with symptoms that many of us have had at some point in our lives—diarrhoea, rectal bleeding, abdominal pain and fatigue. You would imagine that the symptoms of bowel cancer are far worse than anything following a suspect meal. In some cases, yes, they are. In many cases those who develop widespread, incurable disease have quite minor and short lived symptoms.
Despite the wide availability of screening tests, the majority of bowel cancer diagnoses in the developed world happens after presenting to a doctor with symptoms. Those who are ‘lucky’ present with lots of symptoms, but have a curable cancer. Many patients present with late and incurable disease, sometimes with relatively minor symptoms. Studies of people who turn up with symptoms, suggests that there are patterns that describe cases more likely to have the condition. However these patterns are not reliable and in many cases the chance of being diagnosed with cancer, despite the ‘data’ is, thankfully, relatively small. That means that of all those who present with symptoms for the first time, it is the communication skills of the doctor they consult that determines if that person is identified as someone who would benefit from a colonoscopy. But also , crucially, whether the person who is at no risk at all is subjected to a colonoscopy.
The reality seems to be that more people have a colonoscopy, than benefit from the experience. The greatest gripe in many health care systems is that people are left to languish on waiting lists. The finger is pointed either at primary care for selecting too many patients for referral, or at hospitals for not providing enough clinics. In my view the truth is that neither is to blame. Humans vary in their ability to seek help, they vary in their ability to apportion limited resources and in the end the system depends on people. Our human frailty is the weak link.
Once ‘in the system’ the patient is subjected to all that can be offered by the King’s horses and men. Large sections of their anatomy may be removed. Chemicals and radiation may be administered, and weeks if not months of their lives may be spent in an alien, clinical environment. Here they have to adjust to life without the familiar and predictable. Many make a full recovery, which is testimony to the resilience of human beings. Some don’t make it and the rest never fully recover, if not from the cancer, then from the effects of the efforts to save their lives. While being treated they are segregated from their families, their support structures, including their family doctor, who will be consulted in the future, about the diarrhoea, the fatigue, the urinary and sexual dysfunction and the fear of recurrence that may be a feature of life after bowel cancer.
What happens after this ordeal is that people either recover fully and rarely need to think about it again, or continue to suffer debilitating side effects related to the assault on their physical, psychological and social self. In these circumstances the health care system is either supportive and offers all manner of ‘interventions’, or barely supports people who have been ‘cured’ of cancer and now need to get their lives back on track. When the health sectors are divided along funding lines, as is the case in Australia, the scope for it to be someone else’s job are greatly increased. In these circumstances we can detect so-called ‘unmet need’.
Innovation In Cancer Care
Academic careers are being made of documenting all of this. It sounds like chronicling what common sense already tells us. It’s about lack of knowledge, unhelpful attitudes and questionable beliefs. But as a proponent of ‘lean medicine’, I wonder if those who refer people for life saving treatment and then pick up the pieces have something to offer? Can we generate solutions, rather than apply for yet more tax payer’s money to explore what our patients and colleagues are already telling us? The challenge is that we already have a growing demand in primary care, based on the rising incidence of chronic and complex conditions, consequent to an aging population and poor life style choices. How can the care of these patients be improved without relying on people recognising it as simply ‘the right thing to do’? How can we generate a solution that makes life better for everyone. Failure to do so has brought us to the current impasse, and the aforementioned ‘unmet need’. A lean medical solution will allow people to access, and assimilate more information about their symptoms, their treatment and life after treatment. Perhaps it will empower practitioners to be more proactive, without having to increase an already overburdened health work force?
What are your ideas to improve things for the one in four people who will develop cancer in the course of their lives?