A recent post on social media caught my eye….
My husband was very clear. He didn’t want his life prolonged. But they guilted me into it! So I told them to go ahead and put him on a ventilator… I wish I hadn’t done that. I will always feel guilty.
And, a comment from an email a few months ago….
They told me the only thing they could do was amputate my mother’s foot because it would turn gangrenous. I didn’t really understand it, but they said it was an emergency and I had to make the decision right that moment. I learned later that it wasn’t THAT much of an emergency, and there were other treatments they could have tried first. I don’t know why I let them guilt me into it! Now my mother blames me. She won’t let me forget it.
So why do I raise this with you today?
When we are faced with difficult, if not impossible, medical decisions, it’s extremely difficult to make a choice among the options we’re given, especially when the pressure mounts to do it quickly. Further, the options are so often what the medical professionals want, at the expense of what we know our loved one wants (or we want for ourselves.)
No one makes their best decisions in the face of difficult emotions; fear and uncertainty taint our abilities to think straight!
So – how to handle these situations? What should we do when we feel like we are being guilted into quick decisions?
Put on the brakes! Halt! Stop!
And take a deep breath….
RARE are the times when any life-altering decision must be made so quickly. VERY rare. So begin by giving yourself some space to think.
From there, remember you do not have to make these sorts of life-altering decisions alone, without support and input from others who can guide you. You have the right and the responsibility to ask for, and to get help with very difficult decisions.
So here’s some food for thought around difficult decision-making.
The first thing you must realize is that not all medical professionals have your best interests, or your loved ones’ best interests in mind. I realize that sounds harsh and accusatory. But when you realize that the pressure THEY are too often under is more about the bottom line (as imposed by their bosses), then you realize that there is always at least one alternative they rarely mention at all – and that is, to do nothing. Their goal is to make money. Your goal is to make the best decision.
They must follow your decisions, unless they can sway you.
So don’t let them sway you!
Secondly, it’s important to remember that, if at all possible, the patient him/herself needs to be consulted. Now, if you are the patient, then there’s no additional consultation needed unless you are looking for support. But if you are responsible for making decisions on someone else’s behalf, make sure you understand their wishes carefully – and then fight for their right to have their wishes fulfilled. As their proxy or decision-maker, by law the medical professionals must listen to you.
Don’t let them guilt you into anything else!
Here are some resources for getting support and help when you are under such pressure:
- Ask family members for input if your decision isn’t clear. State succinctly that you are asking only for their ideas, but that YOU will be the decision-maker.
- If the patient is hospitalized, ask the hospital’s patient advocate to connect you with an ethics consultation. Ethics consults are usually comprised of professionals who are not currently treating the patient, and understand the many ramifications of the many life-altering medical decisions that must be made. Not all hospitals have an ethics consult team, but many do.
- Consult with a private advocate. Independent, private advocates are ethically bound to serve you and your patient, and ONLY the patient. They call it the Allegiance Factor. You pay them for their work, which means neither the other profit-focused professionals, nor the insurers who have further profit motives, will stand in the way. Their role will be to help you determine ALL your options, their pros and cons, and your (or the patients) needs, wishes and priorities. They won’t make a decision for you. But they can be immensely helpful in holding your hand through the process.
If the pressure to make a decision continues, just tell them that you are consulting with your advocate. They will back down. They will listen. And they will know that YOU are in charge.
Need to find an advocate? Here you go: hundreds of advocates and care managers! You’re welcome.
Learn more about AdvoConnection and The Alliance of Professional Health Advocates