Becoming a Patient
Storm cell on the horizon. Red Rock country, desert southwest. The lightning and thunder added to the captivation of the scene. The day had been cloudless, and this storm cell surprised us during our hike. For those who have enjoyed sound health throughout their lives, the sudden transition from “healthy” to “ill” and the need to integrate into the medical establishment and the role of patient is disorienting at best, even for a physician (whose perspective has always been “on the inside” of health care delivery). This stage often reignites stages of the grief process and tremendous anxiety as the unknowns of diagnostic and therapeutic recommendations unfurl.
Carey -
Becoming a patient isn’t easy for anyone, and perhaps less so when you’ve been healthy almost all of your life, and you’re a physician (there’s an adage: “always better on the dull end of the needle”). The seeming myriad of diagnostic tests required in order to properly select a treatment regimen resulted in many health care visits for CT scans, MRI, PET scan, lung biopsy, radiation planning, surgical and radiation oncology referrals, and others. Overall, I was impressed with the quality of my healthcare team and only mildly annoyed by the inefficiencies associated with some of the visits (the “hurry up and wait” ones). Being a patient requires elements of handing over control to others and trusting them. Being a “control-freak” I had concerns about the issues of surrendering control, and I wasn’t sure about the trust having never been a patient in my new health care system. It turned out to be a smooth transition.
My advice to those who enter this journey is to bring a list of your goals for the treatment and living (written down) with you to the responsible physician. It was obvious that my initial oncologist was surprised by this. We generated our list of goals from these principles.
· Avoid becoming a paraplegic
· Maintain as active level of lifestyle for as long as possible – ideally with hiking, kayaking and cycling being realistic over the summer, and maintain my taste buds so I can continue to cook and enjoy those special bottles of wine that Robin and I have set aside over the years.
· Minimize poorly functional time (especially nausea – I have a high pain tolerance but nausea totally incapacitates me). Inability to do the things we value due to side effects such as nausea, fatigue and loss of energy is loss of quality time.
· Engage in a rapid downward spiral when it’s time with a minimal time of dependency.
Campfire on a starry night in south-central Oregon. While the terminal illness was obviously unwelcome, more disconcerting to me in these early stages were the erosion of several of the vertebrae in my back from the metastases creating a concern for paraplegia. Like the burning heat of the campfire, my attention was fixated on preventing this complication. Ironically, this dampened worries about the ultimate disease - captured in the placid water reflecting stars and the Milky Way rising above the fire. A treatment plan aimed at these goals was formulated quickly and radiation followed by a major back stabilization surgery allowed immediate focus during the initial months. My experience as a patient undergoing major surgery for the first time was far better than I had anticipated.
Nicole -
Going from being doctor to patient is hard. As physicians we are used to working within a system of getting things done. When we are the patient and waiting to have things done, we can be surprised at how long this takes and how mistakes can happen along the way. It can feel like being a pinball in a pinball machine, bouncing from one hard obstacle to another! Finding a medical system that makes you feel safe and recognizes you as a person is key to letting go of the need to control and the fear that is underneath this emotion.
Thinking about who you are as a person and how you define quality of life helps you plan your care. Ask yourself “Who would I not want to be? What abilities would I not want to live without?” Make a list of what is unacceptable to you; both types of care (do you want dialysis or a feeding tube?) and who you don’t want to end up being as a person. If your healthcare team knows what is unacceptable to you in terms of quality of life (different for everyone) then they can make decisions with you to prevent suffering. Always framing goals and unacceptable outcomes in terms of your personal qualities and wishes helps maintain your feeling of being true to yourself. This helps you continue to feel in control of your destiny. Give yourself permission to change these goals along the way as you navigate the unknown journey. What is unacceptable one day may feel right down the road and you can change your mind.
Carey became my patient after his diagnosis and initial surgery, with clear intentions of what he wanted and didn’t want. I recognized his desire to be in control was related to his job as emergency medicine physician (as well as being hard wired!). My goal was to keep him in control of his life and medical decisions while I worked alongside his oncologists to judge whether his treatment side effects would interfere with his quality of life. I worked behind the scenes to minimize worries, tracking down information and reminding his medical team of his overall goals. Watching and waiting for the changes that come with advancing cancer, I reminded Carey that he was still a person living his retirement dream and to keep traveling and focusing on time with his family. I had his back and wanted to make sure that he was being treated as I would want to be treated, with respect and care.
Sorry, we couldn’t resist. Losing the autonomy associated with entering the healthcare system is anxiety provoking at best, and incapacitating for some. We chose this juvenile bald eagle photo as the levity to ground us. It comes as a long standing inside joke involving an expensive river rescue on the Tatenshini River in Canada/Alaska. A Canadian heli pilot landed to give a hand, but only at an exorbitant price. At one point he noted “Yeah, it’s the shits man, but what can you say, Eh?’ So we’ve adopted this useful phrase to address the things that we must accept without losing positive energy to perseveration.
Robin -
Waiting!!!! It seemed as if the first six weeks after diagnosis were nothing but appointments and waiting. Our hopes were hanging on the results of the molecular testing as good results foretold of a more favorable timeline. Of course, the results took longer to get back than promised.
My first meeting with the original oncologist didn’t go well. I had done a lot of research and reviewed the current treatment guidelines so true to my nature I asked lots of questions about what I had read. He went immediately to “let’s see what studies are available” and then “we have really good results with this treatment” when discussing his preferred treatment choice. I kept thinking “no, you don’t – really good results would mean a cure and we both know that any treatment will buy some time but not a cure.” My first impression of the original oncologist was “used car salesman”. I should have insisted right then for a change, but did not as Carey seemed to think he was ok. As treatments progressed and recommendations were made, I became more uncomfortable with him and a change was made. The new oncologist is a fantastic caring individual who has been great at laying out treatment options that align with our goals.
For me the issue of who can I trust to provide all of the available information (with no conflict of interest) was hard to resolve. Who to trust? Who has the patient’s best interests at heart? I believe most physicians have the patient’s best interests in mind when recommending treatments. It turns out that the original oncologist had some significant financial conflict of interest issues including a large share of the “for profit” infusion center. He made more money by suggesting expensive treatments, experimental protocols, and keeping people alive as long as possible. I think big pharma definitely has their own bottom line as the primary reason to exist since cancer drugs are among the most expensive. I cannot imagine navigating this with no medical background. We found that trust when we sought palliative care (self-referred and not mentioned by original oncologist). Dr. Pelly has helped us navigate the “healthcare system” providing referrals when needed, reality checks when necessary and support for our journey always. We know she has our backs and works with us to do what is best for Carey and our family.
Leaving aside the conflicts of interest, oncologists do live in a hard place. How do you balance reality and despair with optimism and hope for patients and families, but for themselves as well? It seems that most err to the side of optimism encouraging patients to see the good outcome even if it is only adding a few weeks or months of life. It is very hard to get an answer to the most important question most cancer patients and their families have – how long do I have to live? Obviously, this is a tricky question as all people and all cancers are different, but there are statistical realities, the cumulative wisdom from years of oncology practice as well as gut feeling that can be safely shared when asked. I have a little more empathy for the difficult position of foretelling the future after last week when Carey seemed to be rapidly progressing over the week, had a long exhausting day and looked horrible. He started home oxygen that day and went to bed early. I spent the evening and most of the night fretting about whether I made the right call by not calling the girls and telling them to come home right now. What if I was wrong and he died during the night? How bad would I feel if the girls didn’t get that one last hug? It turned out fine and he got up in the morning looking and feeling better than he had in a week. All I could think of then was “Chicken Little” and not wanting to be the one saying the sky is falling. I know that the girls might not be here for the end and that is ok, but after their next visits they will know for certain that it might be the last time. Maybe that is how we should always live - maybe this will actually be the last time…