Reclaiming Control Of Your Treatment Plan
Meeting with doctors and specialists should feel empowering and like you’re a stakeholder in your care team. However, most patients with a terminal or chronic diagnosis feel the exact opposite. The combination of limited appointment times, medical speak, the emotional rollercoaster of handling all you’re hearing, and the desire for healing can mean you embark on a treatment autopia track that runs out of control.
That should never be the case. It’s time to reclaim control of your treatment plan, so you and your family make the right decisions for your values, well-being, and quality of life.5 Tips To Help You Regain Control Of Your Treatment Plan
Patients are in control of their health and treatment plans and should be treated as such. You should have the power, control, and necessary information and understand all the risks and benefits of prospective treatments, so you make choices that make the most sense for your goals and that honor your body, mind, and spirit. Reclaiming a treatment plan sometimes means saying no to more treatments. That isn’t always easy at first, but when you compare the quality of life you have now and the quality of life you may gain by ceasing treatments and making the most of the time you have left – you feel empowered and free.Tell your physicians/specialist you need to regroup
Physicians and specialists are trained to “fix things;” they aren’t always very good at being 100% honest and transparent when things can’t be fixed, or treatments aren’t working (more on that in #5). Being your own advocate and admitting you want to regroup, get clear, or hear blunt truths may be the catalyst for more honest communication with the healthcare team. The first place to start is speaking frankly to the physicians/specialists (or their R.Ns., N.Ps, P.As., etc.) treating your terminal diagnosis. Let them know you’re feeling out of control of your treatment plan and need to regroup. Then state clearly what you’re experiencing.- One example might be: “I don’t always understand what you’re telling me about where I’m at and what I can expect from treatment A, B, C. I need more time to digest the information and hear clear opinions about what you recommend.”
- Another could sound like, “I’m feeling X (exhausted, sick all the time, like negative side effects outweigh most benefits, etc.) from the current treatment plan. Am I at a point where the risks outweigh the benefits?”
- Or, “In your opinion, are treatments futile? Should I be looking at ceasing treatment and finding more quality in the time I have left?”
Connect with a patient advocate
Healthcare ad patient advocacy is a rapidly growing field. The fact you’re reading this article, meaning you or someone you love feels out of control or confused about treatment options, proves why. Healthcare advocates work for you, serving as informed, compassionate ambassadors between you and your family – and healthcare providers. They’re training in navigating insurance and treatment red tape and help you voice your opinion, so you never feel like “less than” due to medical jargon or clinical power dynamics. A patient advocate helps clients review their diagnosis, available treatments, and the medicalese/jargon- acting as an interpreter. They provide experienced, objective ears during appointments, visits, or telehealth connections, so you don’t forget key details. In addition, patient advocates can sit with you and provide a compassionate ear as you express the complicated emotions that arise when one faces end-of-life diagnoses. Finally, patient advocates ensure you retain complete control of your treatment plan so that your holistic well-being is always at the heart of any treatments you choose, pass on, or opt to end.Create an End of Life Plan to guide treatment options
Sometimes the best way to figure out what treatments you want or don’t want is, to begin with, the end in mind. Figuring out what you don’t want means you stake a stronger claim in what you do want. Working through questions to prepare an end-of-life plan provides invaluable information. Sharing the answers with your oncologist, gerontologist, or other specialists helps them get a clearer idea of what treatments resonate with the plan, and which ones place you on an autopia track to things you may not want (long hospital stays, a taxing appointment schedule, feeding tubes or life support, and so on).Surrender to some important but hard-to-accept truths
Reclaiming control of your treatment plan often means surrendering to essential, but hard-to-acknowledge truths. We often meet with clients who’ve been miserable for months, or even years, because they weren’t willing to accept the truth. They want the miracle; they want the treatment/medication/therapy to heal the unhealable; and they want “more time.” The longer you attach and blindly hold onto the impossible, the more of what was – and is – possible disappears behind you. Bluntly stated: what good is “more time” if you spend that time physically and emotionally miserable, unable to find joy in that time? Stephen Jenkinson, the author of the book Die Wise, speaks succinctly on this point: More time almost never looks or feels or goes the way people imagine it will when they are bargaining for it…More time, when it finally kicks in, is the rest of a dying person’s life, and the rest of that life will be lived in the never-before-known shadow of the inevitability of their dying. In order to reclaim More Time in a way that supports quality time, processing time, and meaningful time with loved ones means accepting:- There are no magic bullets for a terminal or chronic disease
- Medications and treatments are tools that don’t always work
- When your physical and mental anguish conflicts with the hope of any treatment or medication, it’s time to create a new plan.