Many years ago, my father was diagnosed with prostate cancer by a local urologist in the small town he lives in. He was referred to a urologist in the larger center for consultation regarding surgery to remove the cancer. Working in medicine and having access to his staging reports, I suggested that radiation treatment or watchful waiting might be an option for him. There is a risk of potential harms along with potential benefits associated with surgery and I told him he should ask to be referred to a radiation oncologist as well so he could have all the facts and then make a decision regarding what was best for him. I am not sure what really happened in the next encounter with my father and his local urologist but the consequence was that the local urologist discharged him from his practice and only gave him a referral to a urologist in the larger center which was a solid two and a half hour drive from where he lived. The appointment with this specialist was also not for another three months, which felt so far away! He did not get any of his questions answered nor did he get the referral to a radiation specialist. He was very frustrated and anxious about his disease and waiting three additional months for one opinion and then many more months for another opinion and then likely more months waiting for treatment to start didn’t seem like good medical care. What he needed most at this stage were answers to his questions and to begin treatment for his cancer right away.
Since I was a medical doctor working in Kingston, Ontario, I asked a surgical and radiation oncologist colleague if they would meet with my parents and I, to discuss my dad’s treatment options. They obliged and within two weeks, I flew my parents to Kingston, we had a 60-minute consultation with these two specialists and all together, we made a treatment plan for my dad that was right for him. Within two weeks, he started radiation treatments at the Kingston General Hospital and stayed with us during the weeks of his treatment. When his treatments finished, he flew back home relieved to have that chapter of his life over. He remains alive and cancer free today! The moral of the story here is that if you are going to navigate the complexities of our current health care system you likely need to have someone with experience in the medical field to help and act as your advocate. I am aware of how fortunate I was to be able to play the role of my father’s primary health advocate and that may not be the case for everyone.
This is just one anecdote of a person with an illness who received sub-optimal medical care until a knowledgeable expert intervened and helped that person obtain the type of care that was best for them. It is not plausible that everyone will have a doctor or a nurse in their family that can advocate for them but the anecdote does speak to the importance of having a knowledgeable ‘advocate’ on your side as you navigate the health care system with complex, chronic, or serious illnesses. Before I go into this all further, I want to say that I am not trying to besmirch the health care system or speak evil of the actors in that system. In Canada, I actually wholeheartedly believe we have a great health care system and we can point to many quality metrics to support that assertion. Nevertheless, it is a fact of life that humans make mistakes and caring for sick patients is a complex process that is prone to error. In a study conducted in 2013, it was suggested the numbers of patients who die from medical error in the United States range from 210,000 to 440,000 deaths per year.[i] The latter number would make it the third leading cause of death after heart disease and cancer. Studies on medical error conclude that the majority of medical errors do not result from individual recklessness or the actions of a particular group.[ii] More commonly, errors are caused by faulty systems, processes, and conditions that lead people to make mistakes or fail to prevent them. Extremes of age, complex care, urgent care, and a prolonged hospital stay are associated with more errors.[iii]
So what can be done to increase the likelihood that you get the medical care that is right for you (or said differently, that you are not subject to medical errors that could have been prevented?)? There are two options that you have:
- You need to do as much as you can to manage your own disease. This means, as much as possible, you must become knowledgeable yourself about your disease, your treatment options, and the clinical pathway forward. It is critical that you are aware of the medications you are on, their side effects, and when to judge whether they are working or not or when to seek more professional guidance in the management of your condition. You need to have the personal and communication skills to effectively work with a myriad of medical professionals to ensure you are getting the best medical care. Research shows that patients who are more knowledgeable and engaged in self-management are more likely to achieve better health outcomes and have a better experience with their illness than those who are more ‘passive’ in their illness experience.[iv] Of course, if the patient doesn’t have the capacity to be actively involved in their care, the same body of evidence supports the role of a family caregiver taking charge and being actively involved in the patient’s care.[v] I know for my parents, I attend their doctor’s appointments and if they are in hospital, I visit frequently or ‘live-in’ with them (depending on how serious it is) to be sure they get the right medical care. For my mother-in-law, who passed away a year ago, it was my privilege to actively manage her final days at home. My wife frequently said to me, “How do people who don’t have a health care professional in the family do this? We can only manage this home death because you are a doctor!” (for more on that poignant story, you can read the post I wrote about that here on the blog). For more on how best to advocate for yourself, check out this blog written by a health care advocate
- You must reach out to someone else to be the ‘advocate’ for you in your health care journey.
Yes, this can be a daughter who is a doctor or an uncle who is a nurse, but not all of you will have family with health care experience. Many institutions have designated roles within their organization to be ‘patient advocates’ or ‘patient relation specialists.’ You can seek them out while you or your loved one is in such an institution but they won’t be helpful for managing your condition across the continuum of care. Over the past decade, born out of first-hand view of the quality gaps in our health care system and a desire to ‘fix’ them, many health care professionals have joined the ranks of professional advocates and offer their services for a fee. In Canada, you can find out more about them and how to access them here. This article offers useful advice on choosing a patient advocate.
Ideally, both options should be fully utilized to ensure a safe journey through modern health care systems when you are older and/or have a serious illness(es). At Plan Well Guide, we are trying to empower you to be a better manager of your own serious illness by providing you with the knowledge and communication tools (“The Dear Doctor Letter”) to effectively collaborate with clinicians to make decisions about your medical care. Our research has shown that you are much more likely to receive the medical care that is right for you if you engage in the Plan Well Guide planning process.[vi] We also encourage you to reach out to any of our patient advocate partners if you want additional support in your advance medical care planning or if there are currently medical issues you have and are wanting more expert advice on.
[i] James JT. A new, evidence-based estimate of patient harms associated with hospital care. J Patient Saf. 2013;9(3):122-128. doi:10.1097/PTS.0b013e3182948a69
[ii] IOM (Institute of Medicine). To Err is Human—Building a Safer Health System. Washington, DC: The National Academies Press; 2000.
[iii] Weingart SN, Wilson RM, Gibberd RW, Harrison B. Epidemiology of medical error. BMJ. 2000;320(7237):774-777. doi:10.1136/bmj.320.7237.774
[iv] Judith H. Hibbard and Jessica Greene. What The Evidence Shows About Patient Activation: Better Health Outcomes and Care Experiences; Fewer Data on Costs. Health Affairs 32, no.2 (2013):207-21. doi: 10.1377/hlthaff.2012.1061
[v] Fauer, A.J., Hoodin, F., Lalonde, L. et al. Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients. Support Care Cancer 27, 2103–2112 (2019). https://doi.org/10.1007/s00520-018-4450-4
[vi] Heyland DK, Heyland R, Bailey A, Howard M. A novel decision aid to help plan for serious illness: a multisite randomized trial. CMAJ Open. 2020 April 28;8(2):E289-E296. doi: 10.9778/cmajo.20190179