A big misconception among adolescent and young adult (AYA) cancer patients and survivors is that doctors are authority figures not to be argued with. This is especially an issue for younger AYAs. I know it was a particularly inhibiting problem for me, as it led me to not take action when problems arose and, if any action was taken, it was because my parents stepped up to negotiate with my doctors.
So, I wanted to take this post to talk about the next key pillar of being a self-advocate: negotiation skills. You may be most familiar with negotiation skills related to business and commerce. But, negotiation skills can be used in any setting where you want to get the best outcome for yourself.
I found a great article in the Washington Post that talks about negotiation skills. Author Joyce Russell outlines key components of negotiation, as told to her in interviews with senior executives in her region.
First, she talks about a win-win style of negotiation. This is mostly relevant for business negotiation where it’s helpful for both groups involved to benefit at the end of the negotiation. In our cancer care case, this is less important. But, you could say that an outcome in which your doctor and you are both pleased is a “win-win” and may be beneficial.
The next components discussed by Joyce are the following:
Let’s think about how this would look in an appointment with your oncologist. One of the biggest problems that arose when I went through my relapse treatment was that I had a spinal tap done in the first month of my treatment which led to a 26-day-long spinal headache. Because I had had around 20 spinal taps during my initial treatment as a toddler, I had developed a great deal of scar tissue in the area of the spine where spinal taps are typically done. The physician assistant who did the tap (thankfully I was under anesthesia) took over 13 attempts (pokes with the spinal tap needle) before finally giving up and asking another PA to do it. The other PA moved up another level in my spine and was in instantly. But, the chemo that was then injected proceeded to make the 13 tiny pokes into a single, relatively large hole. And so proceeded the most debilitating experience of my life. Increases in Oxycodone dosing, lying flat for weeks, caffeine tablets...nothing worked to fix it and it got to a point where I stopped eating and was only vomiting from the pain. My vision was becoming blurry and my body growing weak. Only after my mom drove me to the emergency room and demanded my oncologists consult with a pain management specialist about a solution she had found online (called an epidural blood patch) did the oncologists finally reach out of their bubble to get me some help.
I was somewhat guilty in all of this though because I tried to smile and agree with the oncologists’ courses of action during each appointment in which they asked me about how I was doing and how back my headache was. Retrospectively, I wish I had negotiated with them to take action sooner and get creative.
If you find yourself displeased with a course of action taken by your oncologists, or a lack of action taken by them, you have every right to negotiate.
Thinking back to my example:
You are in the driver’s seat when it comes to your health. If you don’t like what is happening with your care, or if there is a lack of action related to an issue that’s important to you, advocate for improvement by negotiating until you receive an outcome acceptable to you.
For questions about this post or about my book/website, feel free to contact me at clarissa.schilstra@gmail.com.
So, I wanted to take this post to talk about the next key pillar of being a self-advocate: negotiation skills. You may be most familiar with negotiation skills related to business and commerce. But, negotiation skills can be used in any setting where you want to get the best outcome for yourself.
I found a great article in the Washington Post that talks about negotiation skills. Author Joyce Russell outlines key components of negotiation, as told to her in interviews with senior executives in her region.
First, she talks about a win-win style of negotiation. This is mostly relevant for business negotiation where it’s helpful for both groups involved to benefit at the end of the negotiation. In our cancer care case, this is less important. But, you could say that an outcome in which your doctor and you are both pleased is a “win-win” and may be beneficial.
The next components discussed by Joyce are the following:
- Preparation is critical
- Build trust
- Have a best alternative
- Good communication is crucial
- Personality factors are key
- Know how to handle difficult negotiations
- Practice and get feedback and know how to improve
Let’s think about how this would look in an appointment with your oncologist. One of the biggest problems that arose when I went through my relapse treatment was that I had a spinal tap done in the first month of my treatment which led to a 26-day-long spinal headache. Because I had had around 20 spinal taps during my initial treatment as a toddler, I had developed a great deal of scar tissue in the area of the spine where spinal taps are typically done. The physician assistant who did the tap (thankfully I was under anesthesia) took over 13 attempts (pokes with the spinal tap needle) before finally giving up and asking another PA to do it. The other PA moved up another level in my spine and was in instantly. But, the chemo that was then injected proceeded to make the 13 tiny pokes into a single, relatively large hole. And so proceeded the most debilitating experience of my life. Increases in Oxycodone dosing, lying flat for weeks, caffeine tablets...nothing worked to fix it and it got to a point where I stopped eating and was only vomiting from the pain. My vision was becoming blurry and my body growing weak. Only after my mom drove me to the emergency room and demanded my oncologists consult with a pain management specialist about a solution she had found online (called an epidural blood patch) did the oncologists finally reach out of their bubble to get me some help.
I was somewhat guilty in all of this though because I tried to smile and agree with the oncologists’ courses of action during each appointment in which they asked me about how I was doing and how back my headache was. Retrospectively, I wish I had negotiated with them to take action sooner and get creative.
If you find yourself displeased with a course of action taken by your oncologists, or a lack of action taken by them, you have every right to negotiate.
Thinking back to my example:
- Preparation is critical. The first thing I chould have done a week into the headache was prepare for my next appointment. I could have researched spinal headaches and possible solutions to them.
- Build trust. This is less relevant because oncologists don’t have to trust you necessarily, but they have to recognize you want to be listened to. So, I would revise this to be build rapport (consistent habit of having reliable and trustworthy communication between the two of you) so they are accustomed to your interest in being heard.
- Have a best alternative. If you find an optimal solution (ex: for my spinal headache, the optimal solution was an epidural blood patch), sometimes that optimal solution is not possible due to external factors (ex: I couldn’t get the blood patch right away because I was not in remission and they did not want to risk spreading leukemia from my blood into my spinal fluid - which had been cleared of cancer). Therefore, it’s important to have other alternatives. For me, this could have meant I would ask for better pain medication or a meeting with a pain specialist who could suggest alternative options.
- Good communication is crucial. This is intertwined with #2. Good communication means clearly conveying what your wishes are and also taking into account what the other party says. You can refer to my previous post on communication skills for a more in-depth description of what is involved in good communication.
- Personality factors are key. If you are a teenage girl trying to negotiate with an older oncologist who may be nice but is one of those not-so-social scientific types who isn’t very good at seeing outside his/her oncology box, you are at a bit of a disadvantage. Understanding the personality of who you are trying to talk to can help you tailor your communication to be more understandable to him/her. For example, if 13 year old me wanted to negotiate with my older, not-so-social, scientific type oncologist, I might be more effective if I am armed with arguments involving the use of my solution for other similar cases or if I present multiple alternative solutions to my problem. Honestly I wish this wasn’t necessary but when talking with some doctors, it definitely is.
- Know how to handle difficult negotiations. This is a bit vague so I’ll clarify related to how I understand it: if you’re doctor doesn’t accept the course of action you’d like, or any of the alternatives you presented (either on one occasion or several times in a row) you are in the middle of a difficult negotiation. From there your two choices are to ask for a second opinion from a different oncologist or to ask for a different oncologist to manage your care entirely. My family chose the second of these two choices about 3 months into my treatment when too many difficult negotiations had accumulated. Remember, you are assigned an oncologist based on your type of cancer and which of them is available to take on new patients when you are diagnosed, so you are entitled to ask for a different one if you are repeatedly displeased with the care you are currently receiving.
- Practice and get feedback and know how to improve. You can practice negotiation with friends or family members. This will help boost your confidence in your negotiation skills and their feedback may be useful in helping you negotiate most effectively.
You are in the driver’s seat when it comes to your health. If you don’t like what is happening with your care, or if there is a lack of action related to an issue that’s important to you, advocate for improvement by negotiating until you receive an outcome acceptable to you.
For questions about this post or about my book/website, feel free to contact me at clarissa.schilstra@gmail.com.
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