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Chronic Snarkopolist: The Conundrums within Patient and Caretaker Advocacy

Post Published: 06 October 2011
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Category: Chronic Autoimmune Conditions, Chronic Snarkopolist, Column
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Hello my loves!

I’ve been thinking a great deal about what it means to “advocate.” In this instance I’m specifically referring to patient advocates. I have said in the past that I can only see improved access to healthcare when advocacy reaches all areas of medicine – patients, caretakers, nurses, doctors, pharmacists, and all services workers including security, housekeeping, and people who keep systems up and running. We all need each other. And we all need genuine compassion. I have said time and again that, “we are all in this together.” And I have meant it.

By understanding our stories and recognizing that at some point in time we will ALL be patients, we will all need healthcare, and we will all benefit from positive changes. I also recognize that there are double edged swords and unintended consequences to what we do.

And perhaps, I have sometimes grown to expect the worst and hope for the best experience with every diagnosis and every treatment for myself and for others. There is a saying in medicine: “medicine is an art.” This art is informed by science and backed up by evidence. That means that sometimes we might sometimes get two different answers from the same doctor and no one will know why. Or sometimes we might get two different answers from two different doctors and it will be confusing. Especially when one answer is, “You’re fine, go home, put your feet up.” And the second answer is, “You have cancer, report to the hospital for immediate treatment.” And while it may sound extreme, art is only beautiful when it is done masterfully. It can make a real mess when done with arrogance or no finesse.

I continually ask myself, “WHY do patients NEED advocates? If doctors and pharmacists and nurses are putting patients first, why?” What does advocate even mean? Supposedly it is to speak or act in the better interest of someone who cannot always act on their own.

Even caretakers need advocates. It is wearying to take care of long-term, high need patients day after day. It is important to recognize that some patients or caretakers will NOT speak up for themselves and that sometimes patients or caretaker needs will go unmet. Some patients will not get adequate pain control. Some caretakers will not get sleep or rest or even eat. Some people will have to work to keep their insurance and yet more work is the last thing they can do without their spirit breaking.

One caretaker told this story about her husband: “First they told him he had GERD, then they put him on another medication. And when he kept complaining they said he had to stop eating so many foods that caused it. They stopped listening to him. But it was the cancer.” We know our family members and we know ourselves. How do we relate it to the people who will believe us? Worse, how do we listen and trust medical advice enough but not trust blindly?

We need to leave room for second opinions and we need to leave room for people who will help the caretakers. It is hard for me to remember that my parents are a generation that do not challenge doctors. When their doctors say things or do things that I might not agree with or need more clarification I am not always there. And I have to remember that it is easier for me to write a note or make a call when I cannot be there in person.

Dear Thyroid was made for us to have these discussions. It is here because THIS MATTERS. I know that I often in both patient and caretaker role, have felt that I do far more work than I wish at communicating, listening, understanding, relationship building, and learning about illness and treatment. And yes, I often report far better care and far better experiences as a patient. And as a caretaker, I feel a little more at ease.  And yet, I am wondering right now WHY this work has been necessary. Why have I had to be my own or my loved one’s advocate so often? Why have you? If medicine is really “patient centered,” why are there so many adversarial relationships and so much confusion? Why do we have so many stories?

And what happens to the patients or caretakers who are on their own? What happens when all you have is your doctor and you are not “empowered” or educated or informed? What happens when you have no “advocate?” What happens? How does one get quality medical care or deal with mistakes? How does one keep from falling through the cracks? Someone once told me they are doing their best to NOT be a patient because they HATE being one. What then? What about people who refuse to acknowledge their health limitations and patient status? How does one advocate for them? Please tell me your thoughts! I must know!

I will see you same time next week! Kiss kiss!

-Melissa

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One Response to “Chronic Snarkopolist: The Conundrums within Patient and Caretaker Advocacy”

  1. Graves Situation says:

    Medicine is NOT patient-centered. It is a business- a huge one- and most of the time it is centered on running the business and bringing in the money. The actual personhood of a patient is an inconvenience at best. (There are exceptions, mainly in older doctors in solo practice, from what I have seen.)

    Most people don’t get quality medical care. Mistakes become the patient’s fault, and too many doctors see an educated or “empowered” patient as a nuisance or worse. Same with a patient who doesn’t respond as planned to a drug or who has a bad outcome after surgery. The medical lingo for a patient who didn’t respond to chemotherapy is that THE PATIENT FAILED the course of treatment, not that the treatment failed.

    It has been really hard to find doctors that don’t act like seeing a patient is a nuisance that takes them away from something else more profitable or entertaining. I always thought it was my money and my insurance that cover their paychecks. Sometimes I think they would just prefer to bill the insurance without the bother of actually having me come into the office.

    I know this sounds awfully negative. I’m really not a negative person and I’m pretty easy to get along with. I have just had too many dismissive doctors. Wish I knew the answer. I guess it’s just another version of the currentAmerican health care plan:”Don’t get sick. If you do, die quickly.”

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