Caregivers: Use Your Voice

Caregivers Use Your voice

We've all heard the saying "don't judge a book by its cover." It's a lesson we probably all first learned about when we were quite young.

But after spending the past several years being one of two caregivers to my father, navigating him through countless medical appointments, I've learned that it's also a life lesson too many in the medical profession have completely forgotten about.

Of course we can't be perfect people all of the time. And it's not fair to expect doctors, nurses, and other professionals in the field to be perfect all of the time either.

A potential problem arises, though, when decisions on medical care are being made by professionals who haven't taken the time to understand their patient as a person, and not just as someone who's affected by an illness. And that's when caregivers need to consider stepping in and speaking up.

Patients are often capable of so much more than what their illness makes them seem able to do at times. When he was rested, my father was rather alert and loved to joke around when given the opportunity. He had a dry wit. But because he was so easily fatigued, and getting ready for appointments always robbed him of so much energy, no one outside our home saw this side of him.

During his appointments, when he would use a wheelchair, he was always hunched over in it, usually taking a nap (or as he would contend, "resting his eyes"). He rarely said a word when away from home. And that made it easy for many of the medical professionals we encountered to assume his disease had progressed past the stage it actually had. And on at least two occasions they treated him accordingly.

After an accident at home left my father bedridden in a hospital for one week, and then in a convalescent home for another, his leg muscles had weakened to the point where he was unable to even stand on his own. His doctor at the time promptly got him into outpatient physical therapy at one of our county's most prestigious hospitals. With a six week prescription in hand, my father had up to three 40-minute sessions each week. Very slowly he began to regain leg strength, but he was still having tremendous difficulty.

When we showed up for one of the last appointments on the prescription, we were escorted to a private room in the back for a meeting, which was not normal. We were told there that the rehabilitation center decided my father's therapy would not be continuing after the six weeks were up. I tried to plead my Dad's case, I was met with resistance. They strongly advised me to put him in adult day care and essentially told me to go on about my life. I was speechless. My anger was buried by hurt and utter disbelief. To us, they were giving up on him.

But we knew what my father was capable of. We felt it wasn't time to give up. Most importantly, my father made it clear he wanted to continue with physical therapy. So his doctor wrote another prescription and off we went for eight weeks of sessions at an independent facility nearby. Six weeks in, he was walking for short distances completely on his own.

Every so often, I wonder how my father's future would have changed if we had actually listened to the physical therapists at the hospital, instead of the people who knew him best? I'm glad we didn't.

On the other occasion, after completing treatment for a blood clot in his leg, my father's internist informed us that there were two possible causes for the clot: inactivity or an undiagnosed cancer. To rule out the "C" word, he wanted us to go see an oncologist for a consultation and testing. We were referred to a doctor in the area who had a resume that was so impressive it would make almost any cancer cell quiver in fear.

Not more than a minute or so into our appointment with the oncologist, he told us that he "(didn't) really see a point" in ordering any tests for a possible cancer, because if they found something, it wasn't going to be treated. I was stunned at what I heard.

When I asked him why, he simply extended his arm and pointed at my Dad, who was hunched over in his wheelchair taking one of his naps. Even though the doctor said nothing, that one arm motion said plenty. And that was that he didn't understand who his patient really was. My Dad was capable of so much more than taking naps. He was still lifting weights, doing modified pushups, and walking up stairs at the end of most nights.

When I pressed the doctor further to explain his thinking, he dished out an analogy. He told me that if you have an old car that you knew you weren't going to keep, and something breaks down, it makes no sense to take it to a mechanic to have the car fixed. But I know my father. He would've at least wanted the opportunity to explore treatment options before conceding to any illness.

After going back and forth on this for several minutes, the doctor and I agreed to disagree on the issue. Consequently, we never set foot in his office again. We figured there were other oncologists out there---ones who were a better fit for my father.

Thankfully, my Dad ended up being cancer free. But what if he wasn't, his cancer was easily treatable, and we stayed with the oncologist who thought my Dad shouldn't undergo any treatment at all? Would he still have been around a few years later to meet his first grandson?

In caring for their loved one, caregivers will encounter a lot of doctors, nurses, and technicians who are absolute experts in their field of practice. But it's the caregivers themselves who are the experts of their loved ones---the patients; they know them better than anyone. And it's up to them to speak up when they feel a medical professional isn't seeing the whole picture.

Of course it's never easy to question a member of your loved one's medical team when you feel they may be making a mistake. But in doing so, you will learn so much about those tasked with taking care of that loved one.

In my experiences with my father, the great ones love to work with their patients; they want any constructive interaction that might possibly create a better patient outcome. Most of them will even alter a treatment plan, if possible, should a patient be uncomfortable with some aspect of it. The bad ones, and there really aren't that many, will seem annoyed with questions and generally act irritated they're having to explain anything at all. As a caregiver, I learned to welcome those who were upset with me asking a question or two; it was an easy way to discover who I probably didn't want treating my father.

Caregivers need not be afraid to use their voice. My father, for one, was definitely better off by his caregivers being an advocate for him.

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Our Experience

We had much of the same experience of your second story. My husband is 57 and diagnosed with stage 4, inoperable, Cholangiocarcinoma. He had only been diagnosed for less than 3 months when he ended up in the hospital from dehydration. He was very close to death because he had started chemo and was barely eating and drinking. But the eating and drinking thing was not so new to us because of the type of cancer he had. He had lost 60 pounds in 6 months because of it. Anyway, the ER doctors and nurses were wonderful and they got him hydrated and admitted him. The nurses on the Oncology floor were wonderful as well. It was when the rounding Hospitalist came on the third day that there was an issue. This doctor had never met us and knew nothing of our story except what was on the computer. He comes in, looks everything over and says they are going to put a feeding tube (PEG Tube) in. No asking. No conversation. The emotional connotations with the words "Feeding Tube" for me were so visceral that I immediately began to shake and tear up. I try my hardest not to cry in front of doctors and especially in front of my husband because I know he pulls from my strength and confidence to help him in anxious moments. When I voice my concern the doctor is not kind or gentle nor does he even talk to me. He just says he's ordering it. After he walks out I'm a wreck and thank goodness there was a nurse in the room the whole time. She calmed us both down and was wonderful. We make the decision that we would contact my husband's oncologist because we trusted him and he knows us. As we decide this we can hear the doctor that was just in our room speaking to another doctor in the hallway. (Little did we know it was our oncologist, yay.) We here the Hospitalist say, "You should stop treating him and send him home for his last days." Luckily we put our faith in the right person, our oncologist. He came in the room right after, reiterated what the hospitalist said and told, "I told him no. We are not giving up on you. You have been fighting this and are new to the whole cancer/chemo process. I will fight with you as long as you want to keep fighting." He then went on to explain the why's of the feeding tube and ask us if that is what we would like to do. I was openly sobbing at this point from the relief of his words. Fast forward 2 months and my husbands numbers are all almost normal and his last PET scan was better then the one before it. Please, never judge a book by its cover.

Jamie Lynne Brown more than 6 years ago