Navigating the healthcare system
The healthcare system is a large, complex, bureaucracy, with its own culture and way of doing things. Understanding how it works, and how your medical team and the system work for one, makes things a lot easier. With any serious and/or chronic disease, one will likely have a complex, interdisciplinary team, with a variety of people involved, and not just one doctor. This is a highly trained, talented, and caring group who provide the best care possible while juggling a heavy caseload, and a number of these tips make it easier for them as well.
Given that I work for government, I had an advantage as I could recognize bureaucratic structures, approval levels and procedures, and develop strategies that helped moved things along. The following were key to helping me help the system.
Once one meets with the specialist, the process kicks into high gear, with a recommended treatment. As the specialists all work on a team basis, there is an element of consensus and second opinions built into the process. However, for peace of mind, we consulted with doctors in other jurisdictions to see if the proposed treatment made sense from their point of view. These consultations confirmed that I was getting the current ‘state of the art’ treatment, and put our minds at ease.
After relapse, and the higher stakes of an allogeneic stem cell transplant (SCT), we sought a formal second opinion from Toronto’s Princess Margaret Hospital. This was very helpful in confirming the options and identifying some issues with the proposed approach here in Ottawa that we were able to raise with my medical team. We also checked on the European approach through the father of one of our son’s friends which again confirmed the general approach but with some suggestions. These were both crisper than the layering approach of transmitting information used in Ottawa and thus were particularly helpful in assessing options.
Own one’s file (own oneself)
It may be trite, but you are the only person who will only worry and think about you all the time. Doctors and nurses are juggling many patients and while they have your file, having your own parallel file to keep track is indispensable. I started my own binder, with all the key documents, to keep track of the treatment schedule, medication information, test results, contact numbers, and key reference material etc. I would always bring the binder to the hospital and appointments so whenever I was asked what medication I was taking; for example, I could just pass on the list from the pharmacy.
The healthcare system is overwhelmingly paper-based (we need eHealth!), and I was asked the same standard questions time and time again. Having my reference binder ensured that I was prepared and had everything they needed (and allowed me to give them paper to copy, rather than make me fill it out again). For example, the patient history form, required at each hospital stay, was easily handled by having a copy in the binder and giving it to the nurses to be photocopied for their records. I transferred most of my important health records to my iPad to avoid carrying the binder, which further simplified things. This was particularly helpful during the second opinion consultation, when I could call up relevant information as needed.
For more details on what worked for me, see the Organizing your medical file section.
Prepare for clinic and other visits
I prepared myself with questions for any appointments or treatments. This was sometimes as simple as asking when do I need to take Neulasta (to stimulate white blood cell growth), to make sure that I could order it during weekdays when the hospital pharmacy was open, or broader questions about how I was doing, for example, taking advantage of the doctor’s presence during one treatment to walk me through the mid-point CT scan. This became more pointed during treatment for relapse, where my questions were sharper, my feedback more direct (e.g., providing details of issues to the team quality manager), and my requests and suggestions more pointed (e.g., requesting Neulasta after my fourth round of ‘salvage’ chemo to reduce my low immunity risk period,reconciling conflicting opinions on the need or not for a CT scan), all while ensuring good respect for the team treating me.
It is not only knowing the file, and the quantitative indicators like blood counts, that are important, but also the equally important qualitative ‘how do I feel’ indicators that make a difference. My favourite indicator was the ‘crumminess’ indicator which gave the overview of how I was feeling (1 being mild chemo taste, 10 being constant vomiting), which could then be supplemented by specifics as required.
Have a partner
There is an incredible amount of information to absorb, and the specialists in particular are time stretched. Having a second pair of ears at appointments is critical to understanding and recalling all the key points. In addition, when things get rough with side effects, as happened with me when I had to go to emergency, a partner is critical to speaking to the hematologist on call and the other doctors, as a number of times I was not fully coherent and able to articulate what I was undergoing. My wife played this key role, and this also ensured we were on the same page on all aspects of my treatment.
Monitor your care
My daily journal allowed me to remember reactions to medication and flag that when going in for a repeat cycle. And where there was confusion – such as one week where it was not clear whether I had one appointment or two, I could seek clarity or, as happened in more than one case, benefit from a mix-up in communications that resulted in a second meeting with a doctor during the same week, that allowed my case to move forward more quickly.
As I became familiar with the hospital and treatment routines, I started to know the standard procedures and could ask appropriate questions when something was not right. Some basic curiosity helped here.
Given my low immunity, I was particularly concerned of minimizing the risk of infections, so if the nurse was not following what I thought was the standard procedure, I would ask, in a non-accusatory manner, about why they were doing it a certain way when I had noticed others doing it a different way. Most times the answer satisfied me (there is a range of acceptable procedures). Only once was I dissatisfied with the precautions taken so I flagged this to the head nurse to make sure that a reminder was given. Other examples included knowing how the intravenous worked, and being able to flag to the nurse if it appeared not to be working.
With the introduction of a patient quality manager for the lymphoma and leukemia unit, I was able to flag issues that I saw to someone who had overall responsibility for implementing a more patient-centered approach. She had the right approach and welcomed feedback and found her a useful channel when things were not ticking over, as they should.
Know the gatekeepers
All systems have gatekeepers. In healthcare, the doctors play this key role. When I was given an initial consultation date of July 23rd, I asked the scheduling person how I could advance this, what advice did she have? She said speak to my referring doctor, as he could speak to the specialists and move it up. I did, my doctor spoke, and my appointment was moved up to July 3rd.
The paramount role of doctors was driven home to me when discussing a discharge date. The doctor wanted me to go home, I was not sure. One of the senior nurses was sympathetic and said she would check with the doctor to see if any flexibility given that I was not sure I was well enough. She tried but he maintained that I was fit to go home, so home I went.
During relapse, I experimented further on how to get responses between doctors, senior nurses and the assistants. No one formula worked (people are people after all) but a mix of coming to clinic appointments well armed with questions, engaging the quality manager, emails and phone calls to the senior nurse and assistant, and escalating when things were not being followed up as quickly as they should be, seemed to help. Being forceful and in charge, but maintaining good relations with the team, seemed to be the best approach.
Leverage the team
While the specialists are the top of the pyramid, your actual time with them is limited compared to other members of the team. Taking advantage of the knowledge and experience of other members of the team provides more information and guidance in terms of what one is going through.
The clinical doctors and interns are particularly helpful, as they typically have more time to spend with patients. The interns are more thorough in their physical exams but can be frustrating as they cannot answer questions directly but almost play ‘telephone’ with the doctors. At one point, this was so frustrating that I complained as it meant I could not engage in discussion, discussion that my relapse and proposed relapse warranted.
The nurses, particularly the more experienced nurses, are invaluable for practical advice and are only too willing to share it. And there are other resources, such as social workers, that can help with some of the psychological and other issues facing you and your family. The latter were particularly helpful in doing a ‘check-in’ with our kids to make sure that we had been providing them with the information they needed, and that this was fully understood.
There is also a range of other service providers in the broader community that can help further, often with a more holistic perspective, than the medical team. I did avail myself of the Canadian Cancer Society peer support program, and spoke to a number of people that had either the same mantle cell lymphoma and treatment, or comparable cancers. Through my blog and other on line fora, I also had a number of good exchanges with people who had undergone, or who were undergoing, similar journeys.
These were particularly helpful in putting my mind at ease, and seeing the common elements that we had faced or were facing. Given my own strong family and friend support network, I did not explore other support, but for others this can be particularly helpful.
Given the number, variety and personalities of the people on the medical team, I needed to figure out what intervention style worked best for each role and for each personality. For the past several years at work, I have been using the 3A system: alignment (telling people what to do), appropriation (asking people for input and direction on what to do), and appui or support (providing encouragement and praise to generate a positive attitude).
Ironically enough, the specialists responded best to alignment, as they were practicing alignment with me on the content of my treatment plan. I found this out the hard way. On the number of occasions when I developed complications and had to call the hematologist on call, one hematologist in particular always had a preference for me to wait and stay home as this was a ‘normal’ side effect. In the end, it was not normal so our modus operandi after the third such discussion was to tell him that I was coming to Emerg and let them know. It worked.
In contrast, the nurses were much more open to appropriation, and appreciated being asked for advice on practical and other tips to make the treatment easier. I could ask them “What do I need to do to make this easier or more successful”, whereas most doctors did not respond as well to this approach.
And of course, appui or support, is always appreciated by all, and the more I recognized their efforts on my behalf, the more they responded on the human side and made my hospital stays more bearable. Given the range of people looking after you and how busy they all are, small things like thanking people and expressing interest in them as people not only makes the experience richer for you but responds to the medical team’s human need for recognition and acknowledgement.
The other point is the importance of repetition. I was dealing with a number of different specialists, doctors, nurses etc. If it was important to me, I had to tell all of them (one of the hematologists gave me this sage advice). For example, it was really important for me to be able to take our son to start university and so I told all the specialists this, as well as the clinical doctor and the nurses. The initial reaction of the specialists was not being sure whether this could be accommodated, but when the medical team as a whole met together to review my file, the decision was made to adjust the treatment to suit a life priority.
After relapse, and after a few occasions where things seemed to be falling between the cracks, I found that more alignment seemed to work better to get things done rather than the softer techniques. I did try to ensure balance in tone and approach to reiterate and reinforce a team approach between the medical team and me. In Toronto, the intern examining me complemented me on my knowledge and questions, which I found useful confirmation that I was on the right track in pressing my concerns, but with respect.