Y’know, some may be wondering how it came about that I was forced to go outside Canada to have hip resurfacing surgery. Here’s my story. (And please be assured that I don’t tell this story for sympathy. I found a solution to my problem. I tell it rather as a warning that we need to think about the kind of health system we want as a public, and to spur us to think about what that could mean for us as pharmacists in the evolution of our practice).First, a brief history. My hereditary hemochromatosis may be the reason for premature loss of cartilage from my hip joints. I have had hip pain for over 15 years. As with most joint degeneration, the pain and disability got worse over time, but the last few years have been the worst.After treating it as a muscular problem for many years (the thought was I was too young for arthritis as I was in my mid-thirties) and then trying physiotherapy, anti-inflammatories, massage, and steroid injections to no avail, X-rays taken to a joint clinic determined that I was a candidate for surgery, with my hip joints running on the rims, as it was.The result was decreased activity, reduced ability and increased pain with and after sports like hockey, tennis, skiing, hiking, cycling, and even walking. The pain and fatigue advanced last fall to the point where it forced me to cut back to part time work, because I was falling asleep talking to patients and dozing off while trying to do pharmaceutical care assessments. Every night, the pain would wake me up dozens of times.The days consisted of constant shifting around to try to find a less painful position in which to sit, making it challenging to concentrate. My hip pain interfered with my ability to do my job safely and effectively. Most importantly to me (although it seems not to be considered or appreciated when medically assessing the impact of pain), my participation in family and social life, my demeanour and mood suffered greatly.Quality of life is a crucial factorDespite the recommendation for surgery, my referral to a surgeon was delayed, because the two surgeons in Ottawa I was referred to (no one in Sudbury does resurfacing, a procedure with better outcomes for more active, younger patients) were not accepting referrals due to the lengthy wait list for surgery. I can’t blame the surgeons for not wanting to disappoint still another patient with the bad news of another year or two of suffering.This is when I began investigating other options, and the only ones I found were outside of the country. Even after the process in Turks and Caicos had begun, I got booked to see a surgeon in Ottawa, so I hoped there might still be a solution. However, the near three-month wait just to see the Ottawa surgeon meant I either had to forfeit my impending and confirmed surgery appointment on the island, or put down a deposit of half the amount of the procedure.I paid the deposit, but still hopeful, met the Ottawa surgeon. He agreed I would benefit from hip resurfacing, but told me the wait would be over a year, not because he was not available, but because of a lack of beds to put me into in the hospital. I asked him if the facts of my quality of life and inability to do my job would impact the wait time and he had nothing else to offer me.In the meantime, my work benefits covering wage replacement, which had already reduced my income, would cease sometime next May, meaning my only option would be unemployment insurance. The economics of the situation meant that not only would I continue to suffer, but I would be losing income with the kinds of financial pressures most my age face (two children in university, another starting next fall).I didn’t really have a choice. Waiting for the system in Ontario would mean working half days, and possibly off completely, for a year or more waiting for surgery. The cost of the private surgery is quite significant, but it is not equal to one year’s salary. It is important to note, however, that finances, and the ability to work, were not my main reason.The effect of the condition on my life-constant pain, the inability to sleep, de-conditioning, my mood- and on my family was already too much. Being asked to let it get worse for another year or two didn’t make sense. However, that is what my province had to offer me.To me, it is clear that my health system failed me. It will have lots of excuses and misdirection about waiting lists and resources, but the fact remains that I am not the only person affected. Orthopedic patients are second-class citizens in health care.Many have stories of long waits and last-minute cancellations because of some emergency superseding the procedure. The rationing of health care means that paying for death avoidance comes before reducing suffering; usually with a delay, and all too often with the exclusion of care for the latter. Governments in Canada are clearly afraid to address this issue because the baby boomers need lots of hips and knees and shoulders fixed.The principle of our universal health care, taken from Health Canada’s website, described as “universal coverage for medically necessary health care services provided on the basis of need, rather than the ability to pay” perhaps defines necessary as life-saving, but not as life-improving, or restoring one’s ability to make a living.This is evidenced by the apparent inability of government to invest in those types of care, so we may need to rethink who can, or should, pay. When a principle causes patients to continue to suffer, that’s unfair. Let’s quit lying to those people that this part of the system works.It’s not the patient’s faultI used to believe that people slipping through the cracks was accidental, and those who did not get the care they needed when it was needed was because they didn’t go to the right place, or because the patient somehow failed to coordinate what they needed to do.What I have learned from my experience is that a patient can be as educated as possible (I was actually told by a surgeon that I was too educated), and motivated and connected enough to investigate all options (I work in a hospital, and checked with many clinicians, managers, administrators, and programs), and still not get the service they need. I was assured that patients with urgent need do not need to wait for a year.However, I have to wonder how bad things have to be to qualify for an urgent need. If being in pain all the time, not being able to sleep, not being able to do your job, to stay fit, to enjoy time with your family—if all those don’t qualify, then tell me what the hell does.It may not be reasonable to count on public payers to address what is missing in health care.The public needs to think about whether increased taxes, or a mixed public/private model system, or some other solution, should be engaged to fill in the obvious gaps for suffering, not just in orthopedics, but across the whole spectrum of chronic pain (which the system does a pretty inadequate job of treating) as well as mental health—two notable areas among others that affect quality of life for millions of Canadians and their families (to say nothing of the workplace, productivity, and other increased costs in care caused by inadequate management of these conditions).What can pharmacists do to help?The other implication is what pharmacists can offer to help in these problems; and should we wait for a public payer to come along, or begin to provide the service for those willing to pay. The work I do for a limited number of qualified patients could help many others.I know from personal experience that some health care is worth paying for, and although the challenge remains to convince some of our patients that some services are worth paying for, approaching them may be easier and more productive than trying to convince the public payer. In fact, making inroads in the private health care sector may be the best way to get the public payer’s attention.Ultimately, there are no medals for suffering more than necessary. Being aware of and sensitive to that fact when taking the opportunity to help our patients as much as possible means understanding all we can do to help. All of what we do has a value and cost to it, and our patients may be required to pay for some of it. That does not mean it is not worth having—in fact, that which you pay for may be the best used and appreciated. A cultural shift for sure, but without it, people are suffering for no good reason.If we do not learn from our experiences, we are doomed to repeat them.
