Two weeks ago, my 46-year old uncle lost his battle with Stage IV bladder cancer. He lived approximately 18 months past his initial diagnosis, enduring chemotherapy and radiation for multiple metastases to his spine. Ultimately, after a hospitalization for hypercalcemia, he died due to aspiration related respiratory failure. He was strong, and he fought hard. That's all I can really say, because there's no way to justify his death or paint it in a good light. It's just unfair and that's that.
There are numerous aspects of his cancer care and his death that keep me thinking about the importance of the patient-provider relationship and above all, honest and effective communication. When he was first diagnosed, he was given a prognosis of 'being lucky to live for 2 years.' After that prognosis, he did well! He went through chemo, and began cyber-knife radiation for the few metastases that had crept up on the spine. And the cyber-knife worked! It shrunk many mets and halted their growth. After tackling one met, though, another would crop up. So regardless of the 'successful' procedures, the bottom line was that this cancer was a bitch.
His sudden decline came as a surprise to some, since he was getting around okay one week, then walking with a walker the next, then not ambulating at all the next. On top of that, he had been constipated for at least a week. And on top of all that, he had some mental status changes and was therefore hospitalized for cancer-induced hypercalcemia. His problems were then addressed and somewhat controlled, and they had even spoken about plans to move him to a rehab center and to begin another chemo course.
My mom and I visited him on a relatively good day, when he was alert, his pain was well controlled, and they were talking about short term rehab plans. Leaving for a trip to Europe within days, my mom and I were nervous, to say the least. When we left the hospital, I finally said what we both were thinking: there's a good chance that he would die while we were away. We both knew and felt that, unfortunately, he would not survive through the summer.
When my dad called my hotel room on the second morning of our trip, all he had to say was "Well," before I completed his sentence. Uncle had died. The news I had been waiting for had actually happened, and we were 3000 miles away. I couldn't cry much, and what tore me apart most was knowing that I couldn't be there for my family in their time of greatest need. What I feel strange about is the fact that I was not shocked, I was not hysterical, I had time to prepare and say my internal goodbyes. He was no longer suffering. The fact was that he had Stage IV cancer with distant mets that were uncontrolled. He was going to die, it was just a matter of when and how. How could I be so rational? So level headed? So factual? I felt and still feel guilty about this. But I digress...
When my mom spoke to my aunt over the phone (which, by the way, is a horrible means of comfort), she spoke to console her saying, "He fought hard, and he was strong." And my aunts response was, through her tears, "I know! Which is why I thought he was going to beat it!" This, right here, is the crucial moment. Had somebody along the way given my aunt false hope? Is it part of the communication process with terminal patients to perpetuate the idea that there's this chance that the cancer might just give up? Am I cynical for not believing that there could have been a miracle in this situation?
It was this moment that got me thinking about how to communicate effectively to patients and families regarding terminal and severe illness. Maybe there's a thin line between optimism and fallacy. Had someone actually delivered the piece of false hope, or had my aunt created it in the absence of pessimism? I wonder what the statistical definitions are of 'likely,' and 'probably,' and 'maybe.' Because don't we say those words all the time to cover the possibility of us being wrong, or to lighten the blow of what we know to be true?
The bottom line is, I guess, that regardless of how or why my aunt had the idea that uncle was going to beat his cancer and grow old with her, no one had recognized it and counseled her. I'm not suggesting that it's important to crush someone with negativity. But, when false hope and denial get in the way of a peaceful, righteous death for a terminal individual, I can't help but think about all the opportunities that must have passed for communication, compassion, therapeutic talk, access to services.
My take-away message from this scenario as a provider is to not be afraid to talk about death and dying. While I will not likely work with terminal patients, I will certainly be caring for people who will one day get old. Why not discuss the important need-to-know things about death while someone is healthy?
I encourage everyone, patients, providers, healthy people with aging family members, to check out the Five Wishes document. Trust me on this, it's a good one.
