Sunday, May 27, 2007

Second Guessing

One of the primary things I have struggled with since Dad's death is the degree of transparency (or lack thereof) between us and the various doctors involved in Dad's testing and treatment. Throughout Dad's cancer, I got all my information from him and Mom since I was not home for his many appointments, and all word from them was guarded optimism. For March and April, what I knew (from them) was that he had a tumor in his lung and multiple tumors in his brain (they hesitated to call it cancer officially until the biopsy results came back). For treatment, they were doing targeted radiation for the brain tumors, and we were waiting on biopsy results from the lung tumor before proceeding with treatment for it. From what I understood, everything seemed under control, and there certainly seemed to be no hurry on the part of the doctors since tests and then follow-up appointments kept getting pushed back. Even with the biopsy results themselves (which seemed to be the linchpin of the whole process), first we were supposed to know the next day, then after the weekend, which then became a week after that. Clearly, someone wasn't in a hurry. Looking back, maybe I should have questioned more from afar, but I trusted that the doctors were giving my parents the information they needed and being upfront with them, and I trusted the information that my parents were relaying to me.

Given this framing, imagine my surprise when my sister pulled me aside the last weekend in April to tell me that Dad's condition was serious and that he didn't have much time left. I mulled that over during the weekend, and then I began my own round of calling to doctors and nurses the following week to see what I could find out. While there were some differences of opinion on minor points, the picture that emerged after talking with two doctors and two nurses was that Dad was terminal, the prognosis was grim, and in the opinion of one doctor, he "only had a few weeks of lucidity left."

So the question plagued me, why didn't we - the family - know this, especially when it seemed common knowledge across 4 different care givers?

Of course, I made plans to come home right away. But even in that, Mom and Dad did not know his true prognosis, so I felt like I was being deceptive if I came home without being able to tell them why I was suddenly uprooting my life to be home indefinitely. Why were they not told? Why didn't I know, and why did I have to do such digging just to find out how sick my Dad really was?

I came home under the guise of being with my family on May 8, my Dad's appointment with the oncologist, but I already knew what the news would be. My folks didn't. I pulled my Mom aside immediately before the appointment to try and set the stage for her so that she'd be in a mind to hear the doctor, but I did not talk with Dad. He went into that appointment saying that he would find out the good news or the bad news, even though everyone involved knew that there would be no good news.

Before the appointment, it had taken some doing to convince Dad to even consider chemo, and in that appointment, the doctor said that Dad was too far gone for chemo and that we should consider hospice. He told Dad he had a few months. I think Dad was shocked... my heart sinks even now because I can picture him, laying on the hospital bed, craning his head up toward the doctor when he said "a few months." Dad knew at that point he wouldn't get better, and it showed on his face. He had not been prepared for that news at all. Even in the car on the way home, he asked me when we started the chemo. "Dad," I said, "there won't be any chemo. There is nothing more for them to do." Dad clearly wasn't in a place going in to that appointment to hear that news. He died one week later.

I know that the doctors really did think that Dad would live more than that one week, and if he really had lingered for a few months as expected, maybe I would feel differently than I do since I would have had those final months by his side. But since he only lasted one week after his official diagnosis, there was quite a bit of shock involved with his death, and I think that was compounded by the two months of wool over my eyes. After two months of thinking he might just be okay, it is a shock to say the least to lose him in a matter of two weeks.

I have struggled with this apparent decision by the doctors and nurses not to tell my folks how Dad was really doing until so close to the end. Since Dad died, I have been talking with family and our family doctor to make sure I understand why things were as they were. Mom and Dad are both not the most objective souls, so I wondered of the doctors really did tell them the true truth and they couldn't receive it. From my digging, while I think some comments here and there from the doctors tried to convey that Dad was sick and that it was serious, I failed to find evidence that they were ever explicitly told exactly what Dad was facing.

I talked with our family doctor about this very thing; I asked him how it was that Dad and Mom went into the appointment with the oncologist on May 8 still thinking that Dad might get better when everyone knew he wouldn't. Our doctor replied with a long speech about how his philosophy as a doctor is not to take away a patient’s hope; he said he will never be the “prophet of doom.” Part of his reasoning, it seemed to me, was that cancer biology is an inexact science and that people often outlast predictions, so he does not want to pre-emptively tell people worst case scenarios. While I understand that impulse, it still seems to me that he has some duty - at the least - to ask my parents at the beginning of all of this whether or not they want him to be blunt and forthright or not; it is not his decision just to keep them in the dark because his prerogative is not the steal hope. And what's more, he can always qualify his news in any way that makes him feel comfortable, including saying that he is uncomfortable giving time tables.

From his point of view, he thinks he did his duty by always making an intentional effort – in his mind – to ask Mom and Dad each time they met if they had questions, by which he meant things like “How long do I have?” or “Will I die from this?” Mom and Dad never asked, so he never told. His approach, it seemed to me, is to only tell when asked directly. In fairness, he told me how serious Dad was without mincing words when I asked, but the problem is, it took me asking. While I believe that he would have told Mom or Dad the same had they asked, I feel like the onus for asking just the right question shouldn't be on the patient; it is the doctor whose duty it is to fully disclose or at least ask the patient if they want full disclosure.

Underlying all of this – both for better and worse – was our doctor's Mom’s death in 6 weeks from this same cancer. Regarding the “prophet of doom” concern he had, he talked about how – at Cleveland – the doctor was very blunt with his Mom, just saying that she had a few weeks and had better go home and get her affairs in order. He said she cried for 2 days, and he was resolved not to be that kind of physician.

In one sense, Dad's illness may have progressed the same regardless, and from that angle, I can see the point of saying, why not allow him to be hopeful most of that time rather than discouraged and defeated. Two months is two months, so why not make them good ones, even if ignorant ones. And I still think the course of treatment Dad got was most fitting with what was reasonable and what was within the scope of his original wishes. And I know that no amount of detective work now will bring Dad back. Still, I am bothered with how in the dark we all were for so long, and had I known how serious this was back in March or early April, maybe I would have come home sooner and had more than a week with him at the end. As it was, the week that we shared was sweet, but Dad was not physically himself, thus preventing us from many of the things that I had hoped to do with him.

I am still not sure what exactly to do with my discontent. Nothing will bring Dad back, and nothing will get me more time with him. Sometimes I feel like I should have asked more questions and been more engaged in the process. I am ashamed now how little I Googled "cancer." I think like my folks, I trusted that the multiple doctors who worked on Dad would do their best and tell us what we needed to know. In the end, maybe nothing would have extended his life past those two months, and maybe it's better that he had hope for most of that time. I guess I just wish there weren't such second guesses.


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