Making smart medical decisions can be challenging at any time. Most patients don’t have medical training or experience making such decisions. But making decisions in the face of bad news can feel downright impossible.
Jane M. — a smart, savvy, well-liked, well-respected business woman who supervises more than 100 people at work, and who juggles her family’s needs as well as her own, day in, and day out — has just been diagnosed with breast cancer.
She is devastated. Overwhelmed. Frightened. Frustrated. Life has just taken her off course and for the first time she can’t seem to cope. She can’t focus at work. She forgot to pick her son up from soccer practice. She daydreams. She can’t sleep. Questions consume her thoughts. What will her insurance cover? Will it leave her family’s finances in shambles? Will she lose all her hair in chemo? How will she manage work? What if she dies and leaves her husband and kids behind? Will she ever meet her grandchildren?
She just can’t seem to pull her act together or think in a straight line anymore. Life is jumbled. She feels incapable of making a decision in any of the smart and savvy ways she has done so all her life. And her husband can’t seem to help — not because he doesn’t want to, but because he is as emotionally strung out as she is.
To anyone who has ever been diagnosed with something so dire as cancer (or whose loved one has heard a difficult diagnosis), this scenario will ring true. I’ve been there. I know.
The situation is often made worse by medical providers who may have different agendas from their patients. Yes, doctors want to treat their patients to keep them alive. But also, if they make the “right” recommendations, they can make lots of money too.
Smart patients ask what defines “right”? Right for whom? What alternatives are there? And then, most importantly, what is right for ME?
Two women, both diagnosed with breast cancer, may or may not choose the same “right” path forward. Jane is 40-years-old with her whole life in front of her—promotions, raises, grandkids, and much more. “Right” for Jane may mean trying everything the medical literature deems to be successful in order to extend her life at any cost.
But what if Jane was 75-years-old? “Right” might mean something very different, including the possibility of choosing no treatment at all. However, from what we know about the healthcare system, a 75-year-old woman may never hear the option “no treatment” because money can’t be made that way.
Not all patients or caregivers realize that making choices is their RIGHT or even their RESPONSIBILITY. No doctor has a right to choose a treatment for any patient. Certainly doctors can (and perhaps should) make recommendations, and talk about possibilities. They should most definitely talk about the consequences of each type of treatment. They should also take the time with you that you need to be sure you are making the right choice for yourself. Finally, they should never push you into any decision that doesn’t require immediate action (For example, an ER visit might require immediacy, but a cancer diagnosis rarely does.)
Unfortunately, it doesn’t always work that way.
It’s up to you to make the right choice for yourself. But how do you do that if you are Jane, and you can’t seem to think clearly? Making the right choices for YOU means removing the emotions from the decision-making, to make as much of an objective review as possible. That’s an almost impossible task, both for you and your loved one.
If you’re struggling with the decisions in front of you, you may need to find that objective resource to help. No one working inside the healthcare system who has a financial stake in your outcomes can be objective, because they have a financial stake in your outcomes. Instead you need someone who is independent of the system, but understands how to use it, and use it well.
Therefore, your independent, private, patient advocate is the right person for you. They will guide you through your options, be sure you get the second opinion(s) you need, work with you to create lists of questions for your doctors, help you develop pros and cons, ask you the right questions to help you make your decision, and even use decision-aids—so you can make the right choice for you.
So, if you have scary symptoms, or you’ve heard those scary diagnosis words, find the person who will help shepherd you through this difficult time.
- How to Make an Objective Medical Treatment Decision
- Patients Have the Right to Refuse Medical Treatment