The Fallible Caregiver Series: Advocating Within the Medical Establishment
Last updated: September 2023
My wife has cried more tears over something even more than stage 4 cancer or the cancer treatments: dealing with the frustrations and incompetence of the medical establishment.
The medical establishment can be hard to navigate
Sounds crazy, huh? You'd think the person dealing with a terminal disease would shed tears and show outrage over their physical pain and uncertain future, not over the people and institutions created to care for them. But I know many of you members of this unwanted club we find ourselves in are shaking and nodding your heads. You already know what I'm talking about.
By "medical establishment," I refer to doctors, nurses, hospital administrators, insurance companies, and even pharmacies. If I were to pinpoint the chief frustration my wife and I have experienced, it would be with hospital administrators, schedulers, and doctor's assistants.
Speaking up as a caregiver
My wife, Rebekah, is shy, quiet, and respectful. She can be timid and passive and sometimes struggles to speak up for herself. 8 years of advanced breast cancer and chemo have only amplified these tendencies.
I don't consider myself a "type A" personality, but I am a leader. I am her protector and caregiver. Like an older sibling protecting their younger sibling from a bully, I often step in to put the bully in his place and "make" things right for her. This is part of my duty as a husband and as a caregiver.
Staying attuned to physical and emotional needs
A verse in the book of Proverbs (NLT) comes to mind, "Yes, speak up for the poor and helpless, and see that they get justice." As caregivers, we need to be attuned to the needs of those we care for, both physical and emotional. When we see them getting thrashed around by the "system," we must see it as our duty and our job to speak up on their behalf.
For the first 5 years of her diagnosis, Rebekah was treated and cared for at the City of Hope in Duarte, California. That place and the doctors (and nurses) there were amazing. It really is a special place of hope. Rebekah's oncologists loved her and wept with her when bad scans returned. They cried with her when we moved out of state and had to leave.
Yet even in the City of Hope, she cried tears of hurt and frustration over the incompetence of those who sat behind computers and "ran" the hospital operations. But those tears and frustrations were small compared to the current hospital she attends.
Switching hospitals and feeling like a number
I won't name the current hospital, but we moved from California to Oregon, and our new hospital is quite well-known and prestigious here. Her first oncologist didn't see her for 3 months after becoming a new patient there. It was quick and short when we met him, with virtually no personal touch. We felt like nothing more than a number on a chart. We felt (and still feel) like no one there gives a s**t about her or what she's facing.
3 ways caregivers can advocate for their loved ones
Rebekah's fighting every day, suffering every day to stay alive, and those who are supposed to be on her team don't show any sign of caring. She's just a number on a chart somewhere.
Sometimes, as spouses and caregivers, we must step in and fight for them. Here are 3 ways we can do that.
1. Make phone calls
Sometimes, maybe all the time, we need to call the insurance company, the pharmacy, the hospital, the bill collectors, etc. These simple tasks are often overwhelming to someone dealing with breast cancer. Recognize that tasks like this are akin to stepping in between the one you love and an oversized bully.
2. Ask questions
During Rebekah's appointments, I always try to think of questions to ask the doctor–especially questions she either forgets or wants to ask but may be too timid to ask.
In my mind, I scan Rebekah from her head to her toes, trying to think of any issue that's bothered her. I ask questions about those issues and how we can remedy or ease those buggers.
3. Play the "bad cop"
Sometimes, you must play the bad cop. This is the second half of that verse in Proverbs, to fight for the rights of the poor and needy to see that justice is done.
I've done this a few times directly with the doctors themselves, where I call them out on their impersonal inattention and lack of concern.
Recently, a scheduler in the radiation oncology department was rude and short with Rebekah and even hung up on her. And Rebekah was calling them because of a scheduling mistake they had made!
Rebekah called me, pissed off and in tears. "What's their number," I asked. I immediately called and asked for the manager of the department. I calmly, respectfully, and forcefully told him how his staff member treated a patient. He took it well and apologized several times. I felt he understood and would do something about it.
Squeaky wheels are annoying, but they get the grease.
Advanced breast cancer is an isolating and lonely disease.