When Your Oncologist Relationship Is Completely Broken: What To Do Next? | Cancer Treatment

Your cancer doctor is the gateway for everything. Fix the partnership or know when to walk away.#cancerdoctor #cancerpatient #chemotherapy

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Episode Description:

You've raised the concern more than once.

You've gotten the same answer more than once.

That's not an instance — that's a pattern.

And the pattern is what quietly damages your cancer treatment.

In the new post:

• The "check engine light" most patients ignore until it's too late
• A formal request that changes the entire dynamic with your oncologist
• A hospital role almost no one knows they can call on
• When it's time to walk away — and how to do it
• The one rule about home infusions you can't break

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Inquiries: 

info@elevatingcancertreatment.com

https://elevatingcancertreatment.com

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Disclaimer:
The information provided in this podcast is for educational and informational purposes only, and does not constitute medical advice. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard or read in this podcast or on this channel.
Reliance on any information provided by Dr. Jay Chaplin or Elevating Cancer Treatment is solely at your own risk. Dr. Jay Chaplin is a scientist and drug developer, not a medical doctor providing patient care. The content presented here reflects general scientific understanding and research, and may not be applicable to your individual health circumstances. Individual medical conditions and treatments vary, and no two situations are exactly alike.
Always consult with your personal healthcare provider before making any decisions about your health or treatment plan.

Transcript

SPEAKER_00 0:00

Who is your oncologist and are they actually the right person for you? And if not, how do you deal with a broken and unsupportive partnership? That's critical. Today we're giving you tools for getting the most out of your partnership with your oncologist. This is for anyone who has to work with an oncologist, either for yourself or for a loved one. This video will help you with picking the right one for you, knowing how to communicate effectively with them, and it also dives into some things you can do if the relationship isn't working. Everyone's focused on the drug, the dose, the side effects, the diet, the supplements, all those are important. But your oncologist is the gateway to all the heavy-hitting things. Hello, and welcome to Elevating Cancer Treatment, where we explain the science and debunk myths to help you navigate your health journey. My background is a little different. Beyond educating about cancer, I'm actually designing new drugs that are defining the future of oncology. This direct hands-on experience offers me a very different perspective of how these cancer treatments work on the body, interact with the cancer cells, and cause side effects. And these are insights that I'm excited to share with you. If that sounds interesting, make sure to like this video, subscribe to the channel, and hit that notification bell so you never miss an update. And please share it if you find it useful. I'm Dr. Jay Chaplin. An important reminder, I'm a PhD, not an MD. The information in this video is education and it's not medical advice. Every cancer is unique and no general information applies to everyone. Please remember that. Always consult with your healthcare provider for guidance on your specific situation. And two quick things. First, as a thank you for being here, I've created a free resource, 10 things to elevate your chemo journey, which you can download from the link below. And second, by signing up, you'll also get updates on that innovative cancer treatment I'm working on. I'm confident it represents a significant advancement in immunotherapy. So please take a moment, download your free guide, and join us in shaping the future of cancer treatment. So what do you do when the relationship is already struggling? There's a book I recommend to almost everyone navigating a difficult relationship, oncologist or otherwise. It's Crucial Conversations by Joseph Grenney. Granny writes about how high-stakes emotionally loaded conversations, the kind where a lot is on the line, commonly go wrong. One thing that happens is people often talk right past each other, not because they're not trying, but because they're often addressing the wrong level of the problem. There are three levels. Level one is the content, the specific instance. Something went wrong, or it didn't go the way you needed. You address that specific thing. Okay, makes sense. This is the easiest and most comfortable level, and it is the type of conversation that almost everyone defaults to. Why would that ever be a problem? Here's why. You always have those situations and you can always default to dealing with them. But if you're at level two, it doesn't work. Level two is the pattern. Something's happened multiple times. You've made a request, it's been refused more than once. You've actually come to expect this. That's a pattern. And if you only address individual instances without naming and resolving the pattern, you can solve the instance and leave the pattern intact. Sounds good, but it's not. It's worse. That results in frustration for everyone because you all feel like progress should have been made, but nothing has actually changed. That pattern keeps driving a wedge into the relationship. You have to address a pattern separately from the instance that triggers it. Level three is the relationship itself. If the pattern continues long enough without being addressed, people polarize, the relationship itself begins to degrade, you lose trust and respect for each other. You see each other as the enemy rather than as collaborators. And once that happens, it's very difficult to rebuild. You want to intervene well before you get there. Think of the pattern level like the check engine light for the relationship. You want to get it fixed when the light comes on. You don't wait and ignore it until the engine is smoking in the middle of the road behind you. When a pattern comes to the surface, you have to treat the pattern or else it will devolve into destroying the relationship. Now, the best approach in these conversations is to stop and think first about what you actually want to accomplish. Think about the context. What are you making this mean? And what does it actually mean? What do you want out of this for you and for them? Because your oncologist is a human being dealing with their own stressors, their own system pressures, their own biases. Plan and practice the conversation from a place of grace for them and a place of clarity about what you need for yourself. Okay, now let's talk about what to do if the relationship is already completely off the rails. The relationship is degraded, you've already polarized, you feel blocked, and you don't know how to move forward. I want to give you two specific tools, and they're very effective. But warning, let's be honest, they're confrontational. They can shift things in a positive direction, I've seen them work well, or they can escalate things and make them far more negative. You need to be prepared for either outcome. This is a way to get things unstuck, not necessarily to get what you want. And you need to be willing and able to walk away if necessary. I know some of you are in remote areas, but telehealth is a significant and growing option. We'll talk about that in a few moments. Now, number one, a written letter of justification for denial. Instead of asking verbally when you're sitting down and getting a verbal no, and then having no documentation of that, it is completely within your rights to ask for a written letter of justification for refusal. If you ask for this, please make sure that the request is in your my chart, your Epic, or other charting system, so that there is a record of the request. The specific framing is something like this. I qualify for drug X. You are declining to prescribe drug X. I'm requesting a formal written letter explaining the justification for that denial. Now, what this does is it changes the entire frame of the encounter. You are no longer just someone chatting and asking a question. You are a party requesting a formal documentation for medical decision. That is a meaningfully different dynamic. In most cases, this prompts the oncologist to reconsider, because now the decision is going to be on paper. In other cases, it may cause them to want to end the relationship, and that's a real possibility. I do want you to go in with your eyes open. But if the relationship is already that degraded, that outcome may not be the worst possibility. This has broken things loose for a number of our clients. It is a real lever. Tool number two, patient advocates or hospital ombudsman. Most people have no idea this exists. Almost every hospital and cancer care center across the United States has either a patient advocate, a patient representative, or a hospital ombudsman. These are slightly different roles with very significant overlap. Every hospital that either takes Medicare, Medicaid, or is accredited must have one. And critically, they answer to the hospital, not to your oncologist, not to the department. They are not doctors. They work in risk management, and their job is to protect the hospital over the doctor. You can go directly to them. You can make your case clearly and specifically. My oncologist has repeatedly refused. This has been an ongoing issue, and I'm concerned about my standard of care. How do we move forward with this? It's their job to find a path forward. They are essentially the on field referee, and you are allowed to flag one down. This is a valid, underutilized option for anyone having difficulty accessing treatments that they clearly qualify for, or when an oncologist is making decisions that don't align with your wishes. Again, please understand that this is a confrontational maneuver. What you're doing is you're going around your oncologist or you're trying to force their hand. This may very well get you the result you want, but will almost certainly either further degrade the relationship or force a switch to a different oncologist. Again, that may not be the worst option. So, by the way, these resources are not oncology specific. You can use these with any medical scenario. These two options are available for anyone navigating our US healthcare system. Now, for those of you working through other healthcare systems, my question to you is: do you have similar resources available to you? Please let us know down below for everyone's education. Now, if it's time to move on, your insurance company can help you identify other local oncologists or telehealth professionals. You can then interview those oncologists using the same four questions from earlier up above. Those questions work whether you're sitting in a waiting room or a doctor's office or if you're in your own bedroom on a video call. But what about those infusions? So infusions can almost always be done at home through a traveling infusion clinic. They'll come to you. Insurance companies often actually prefer this. It's significantly less expensive for them than hospital overhead, and it's considerably more convenient for you. So, one important caveat to that. If you are going to start an immunotherapy, you're going to take a dose for the first time, please always do that first infusion in a hospital setting where you can be monitored. Cytokine release syndrome is a real risk on the first exposure to certain agents. But if you don't experience a severe adverse event in the very first administration, you're very statistically unlikely to have one in future administrations. You can get the rest of them at home with a home infusion service. That becomes a reasonable option. So I want to close with something concrete, because outcomes can be dramatic when you approach this the right way. I've had clients in situations where their oncologists were very resistant and they had to use the more formal documentation steps. But in other cases, the oncologist has done a complete about face with a bit of foundational work. So, one scenario I come back to often: a client had been on a specific chemotherapy regimen for a very significant amount of time, multiple years. It clearly was not working, side effects were horrible, cancer control kept getting worse and worse. And then they were offered the exact same chemotherapy, slightly higher dose. Again. Supposedly the best and only real option. And I want to be honest about how demoralizing that is. To be offered the thing that has already failed you as the solution to it failing you, just a little bit more. That's like the old aphorism. The definition of insanity is doing the same thing over and over and expecting different results. Exactly like that. We helped that client propose a different drug. One specific ask with supporting data framed clearly. The oncologist looked at it and said, Oh, yeah, we can switch to that. The switch happened rapidly, the response was very rapid and very positive. Excellent. This is what is possible when you know what to ask for, and just as importantly, how to ask for it. The hard part often is knowing what to ask for in the first place. This is not something that's unique to us. We do work with clients on exactly that, identifying whether there are better options, newer drugs, or approaches the oncologists may not be up to date on. But it's also something that you can find out for yourself in researching your specific situation. So here's what I want to leave you with. Everyone asks about doses, drugs, diets, and things they read online. Completely valid. Almost nobody asks, do I have the right oncologist? And am I working with them in the right way? Those two questions will shape your entire treatment experience more than almost anything else you can do. They are the gatekeeper to your high-leverage options on this treatment journey. They can be your biggest obstacle or your biggest support. Please manage those carefully. Manage your relationship with your oncologist carefully. If you want help working through your specific situation, figuring out what to ask for, how to frame it, or whether your current treatment plan has gaps in it, again, that's what we do. The link is in the description. And this is way easier if your oncologist is on board. So please leave a comment, tell me what your experience with your oncologist has been like. Has it been collaborative? Has it been frustrating? Did something shift when you pushed back? Positive or negative? I read these as do other subscribers, and your story might be exactly what somebody else needs to hear today. So if this video was useful to you, please like, subscribe, and share it with someone else who's navigating this. And don't forget to hit the notification bell so you never miss an update.