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Now that I've gotten the basics of my medical situation out there, I would like to discuss more interesting things: the general issues that my specific situation illustrates.
The big issue is how to balance the goal of maximizing quantity of life (the focus of traditional medical care) with the goal of maximizing quality of life (the focus of hospice/palliative care) in the treatment of terminal illness. This issue is only going to get bigger with the aging of America's population, advances in medical capabilities, and ongoing debates about health care reform and how to control health care costs. According to Atul Gawande: "The soaring cost of health care is the greatest threat to the country's long-term solvency, and the terminally ill account for a lot of it. Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit." (See newyorker.com)
With regard to my particular situation, I feel that my doctors, family, and friends often weight the first goal (quantity of life), relative to the second one (quality of life), more heavily than I do. They would like me to exhaust every treatment option available. It's understandable - they don't want me to die; they want me around as long as possible, and I appreciate that. I don't mean to suggest that they don't care about my quality of life, but they don't know - they can't know - what my condition feels like to me. From the outside I look pretty much like my normal self, but on the inside I don't feel like my normal self at all. Most people see me when I'm feeling relatively well; only a couple of people (my partner Grace and my mom Kathy) see me when I'm feeling my worst.
I also don't mean to suggest that I don't care about my quantity of life. I'm not happy about maybe getting only about half of my expected lifespan. The prospect of not being able to be there for my sons as they grow up makes me really sad. I would like to see grandchildren, mentor junior colleagues as I have been mentored, take care of my parents in their old age, and grow old with Grace. But I also believe that there is a point where the quality of life that can be provided does not justify additional efforts to extend life. All terminally ill people (or, if they are incapable, their representatives) need to determine where that point is for them. If I am too sick and tired to interact with my sons, and there is no hope of recovering, then additional treatment seems pointless to me.
But given the uncertainty of my situation, there is always some hope, and that makes the decisions unclear and more difficult. The doctors can't say for sure "If you do X, then the outcome will be Y." A treatment that works well for me might be just over the horizon. I am reluctant to refuse treatment while there is still some hope, because I don't want my sons to ever think that I chose to leave them before I had to. I hope they will understand my decisions (that's part of the purpose of this blog). I feel a responsibility to my loved ones to fight as hard as I can. But I don't want to die angry. At some point we all need to accept the inevitable. If I make treatment decisions only to satisfy my loved ones, then I risk becoming resentful of the very people whose support I need the most.
Let me give you a specific example. One of the drugs I receive during my chemotherapy, Avastin (bevacizumab), is described by the doctors as having "basically no side effects." If pressed, they will allow that it causes bleeding, particularly in the nose. OK, nosebleeds. I've had nosebleeds before and they're annoying but not a big deal. But if you've had a slow but constant nosebleed for six months (as I have), then it becomes a big deal. If you wake up every night because your nose is clogged with dried blood and you are coughing up blood that has run down your throat and you have frequent headaches due to blood-clogged sinuses, then it becomes a quality of life issue. And yet I feel like a whiner for wanting to stop receiving Avastin. After all, this drug has "basically no side effects."
Ah, there is so much to talk about. But it will have to wait until next time.
