Why I Didn’t Take the Doctor’s Advice

22 Comments

I once had a uniform opinion of doctors. Given the extensive training physicians undergo, plus the crazy work hours they often endure, I typically put them in an exalted position. Then my father got sick.

My attitude changed about the time we were waiting on the results from my dad's lung biopsy. They took a sample on a Friday afternoon and said we would have the results in 48 hours. By Sunday night, I was crawling the hospital walls waiting on word from the doctors. That's when I saw the physician who did the biopsy rushing down a hallway. I tracked him down and asked when the results would be ready.

"Uh, probably tomorrow morning, but don't get your hopes up. Both his lungs looked terrible." With a conciliatory pat on my shoulder, he then said, "I guess this serves as a good lesson why you should never smoke!" And off he went.

I stood there shocked. Shocked by not only what he said, but also how he said it. With so little compassion—or even common decency—he essentially told me that my father was a goner.

My story isn't meant to be an anti-doctor message, but I do hope to remove the pedestal on which patients and their families sometimes put physicians.

Without a doubt, healthcare providers can be amazing human beings. That became crystal clear when my dad was hospital bound. I can never emphasize enough the gratitude I feel for the kindness my father's nurses showed to both him and me. But doctors are still just people. They get distracted. They say the wrong thing. Intentional or not, they might also force upon you what they think is right for your loved one, even when your gut is telling you otherwise.

This, too, became clear when my father was in the hospital for the last time. He had pneumonia, and despite rounds of antibiotics, his improvement was minimal. The edema in his lungs demanded daily drainage, and his low hemoglobin count required two blood transfusions. Still, he was lucid, and more importantly, in good spirits. That was just my dad. Even with an oxygen mask on, he was quite the jokester.

One Sunday afternoon, we were watching the Bears game. I was happily surprised because my father was actually eating his lunch: a hot dog with fries. All in all, it was a very good day. That's when his pulmonologist made an unexpected visit. He checked my dad's lungs, asked how he was feeling and then gestured for me to speak with him in the hallway.

"So are you ready for hospice?" he asked.

I was taken aback by his bluntness. Granted, I knew this was where we were headed, and perhaps a day or two earlier I might have understood his motivation to ask. But hadn't he noticed my father's demeanor just 30 seconds ago? Didn't he see Dad sitting up, eating a hot dog and intently watching his favorite football team?

I answered no. He pressed the issue, telling me what I already knew. My father's pneumonia was not improving. His edema and anemia were significant. He would likely not return home. Again, I said no.

I had medical power of attorney, which I suppose is why he was talking to me instead of my father. However, my father was alert and able to make his own decisions. Until that changed, or he alone decided that he was ready for hospice, I knew it was not the right choice.

But it was incredibly difficult to tell this doctor—this person who presumably knew better than I did—no. After a few minutes, he realized that he wasn't going to change my mind and left.

Two days later, my father's health took a severe turn south. He then asked for hospice. On his own terms. So here's my message: stick to your convictions. While a doctor has the medical expertise, only you and your loved one have the intuition to know what is best for your situation.

Anna Keizer was the caregiver to her father who was diagnosed with stage IV lung cancer in 2013. A writer by profession, she has written extensively on a variety of health topics, including cancer, heart disease and stroke, for healthcare clients across the nation. She also writes for walk-in tub manufacturer Bliss Tubs and its aging in place blog.

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22 Comments

I will be happy to share my thoughts. While the dr's bedside manner may have been too blunt (in both instances), the American public needs to be educated in the truth about hospice care. When a person is under hospice care, this does not mean the death knell is ringing for you. It does not mean you have given up on life. What it means is, you will get MORE care, BETTER care, MORE supplies, and MORE frequent caregiver visits of all sorts: nurses, home health aides, volunteers, chaplains, social workers, etc. I am a home health nurse and I see every day both in person, and in the news re: celebrities and such, that hospice care is only begun one or two days before the pt finally succumbs. How frustrating this is for hospice personnel....before they have completed the admission paperwork, their patient is already gone. It is a common fallacy that you cannot get on hospice until you have only 6 mos to a year. Many people get the green light for hospice and they go on to live longer than a year afterward. Meantime they enjoy a much higher level of care. It also does not mean that you are no longer being treated. It means that aggressive treatment is scaled back when it is realized that aggressive treatment will only prolong the inevitable. I have had patients refuse hospice because they think Dr. Kevorkian will be their doctor. In truth, you will receive palliative care that will make you more comfortable. Individuals often "rally" right before their death....they suddenly sit up, get dressed, put on makeup, become more lucid, laugh and enjoy their loved ones for one final day or two and then suddenly they are gone. Hospice workers are sorely limited when they have not gotten the chance to learn what your goals and dreams are before all they can do is the bare minimum...it must be very frustrating for them.
It's not at all uncommon for a terminally ill patient to have a rally and a really good day just before the last downhill slide. That happened to my mother-in-law as well, also a lung cancer patient. Also, we went through that as well--my husband refused to stay with our long-time primary doctor because he saw him as "rude" and inconsiderate, and went to a very nice doctor who missed what was going on with him--we'll never know if how much difference it made long run but the side effects of the mistaken treatment were serious. The "rude" doctor probably saved my sister-in-law's life; she was having trouble getting to the bottom of what was was wrong with her, and my doctor checked her out, and then got on the phone with a department head at Kaiser Hospital and said "you will see this lady, and you will see her NOW!" Within a week she was having essential neurosurgery. Bottom line is that you need to look past the personalities at their performance, and also do you your own due diligence and be informed.
Doctors are just people. Some of the best doctors I've known have terrible bedside manners. And some of the others I've known have wonderful bedside manners, but they are totally incompetent as doctors. Being a blunt person myself at times, I don't mind a doctor being blunt with me. Personally I would rather know the truth, so I would know what I needed to do. And I recognize that my parents and I are just one group of patients that this doctor tends to. Doctors cannot get too tangled emotionally with their patients or their jobs would be insufferable. Patients, particularly older ones, are going to die. The doctor has to live on without being pulled down by grief each time a patient is lost.

That said, I saw no problem in what the doctors discussed here did, only in how it was received. The doctor who recommended hospice was spot-on. He saw what was coming two days later. Sometimes a doctor has to shake a family to reality that a loved one will be passing soon. No one wants to hear this, but it does need to be said.

I've never thought of doctors as being anything but intelligent people. If they don't have good bedside manners, it is okay as long as they are competent at their job.