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The first lesson I've titled: "The Value of Dying." We physicians have come to think about giving a patient the news that they have a terminal illness as something horrible. We call it breaking bad news. We resist taking this step as long as possible. We talk about it as something that is potentially destructive of people; destroys hope, we say. We ask: "Will this bad news put my patient into a tailspin of rapid deterioration; will she go on to die simply because I have destroyed her hope for a cure by telling her that she is terminal?"
I think what that perspective fails to capture is the idea that knowing that one has a terminal illness, knowing that one is dying can be extremely valuable information. Yes, it involves major stress and it will precipitate radical change in the patient's world. Everything may have to change, but that doesn't mean it's not an incredibly valuable thing for them to come to know. Its value can be talked about in a variety of ways. We could, for example, talk about people's right to know the truth about their situation. We could talk about people's need to know. We could focus on the fact that people who are informed about this situation are very likely to understand the value of Advance Treatment Directives and appointing of a Durable Power of Attorney for medical care and of discussing "DNR status" if they are ever admitted to a medical facility. The patient or family may even want to have a pre-and post-hospital DNR order to protect them from inappropriate CPR in the home
We could talk about the fact that such patients are likely to consult with their attorneys; to complete wills so that their estate doesn't end up in probate; to consider setting up living trusts and other means of protecting assets from onerous inheritance taxes. We could discuss the need for the terminally ill patient to establish relationships with palliative care/hospice professionals and programs to address special health care needs; and, just as importantly to re-negotiate relationships with on-going health care providers. Such patients need to explore with their health care providers fundamental issues like the almost unique goals of medical care in caring for a dying patient. Yet, it is clear that none of these vitally important issues are addressed unless the person is informed that he or she has a terminal illness.
Our experience during the first six months, although extremely dominated at times by grief work, was that it was okay and it felt good to have this information and we did a lot of planning. We did a lot of preparation and thinking and anticipating problems that were coming down the road. But we also made some decisions in the face of our terminal illness that we consider in retrospect to be very important decisions. For example, we were engaged to be married six months prior to my diagnosis. We got married six months after my diagnosis. And if people ask me what's the one thing you've done in the past five years that might have accounted for why you're still here, I would say that would be it, hands down, no question about it.
We also packed a lot of living into that first year. My daughter Sheila decided that she wanted her old man at her wedding. She had been engaged. She decided to get married, too. They got married three weeks after we did. We decided to create a home together. Pam had her house, I had mine. We decided, what the hell, we'll hire a really good real estate guy and tell him that he's got three months to sell her house, my house, and find us our dream home. And we hired this guy and he did it. It was amazing. The biggest problem we had was with the banks. Everything else fell into place with a minimum of problems.
Well, while we were engaged in all that living, it suddenly dawned on us that a whole year had gone by, and here we still were feeling pretty good, fairly minimal symptoms, mostly recovered from the surgery and the effects of the surgery. And, as a matter of fact, we both started noticing things that were very different about ourselves, different priorities, different values, and different ways we were doing things. I made the observation one day that I liked the person I was becoming better than I had ever liked myself before. Although my life was very different, I liked living in this new, after-cancer way. One example, I was living in the present. Somebody takes away your future, it tends to focus you and what it focuses you on is not the past. What it focuses you on is the present. I felt that I had been given a chance to do something that we Americans do very little of, to live fully in the present. It was about that time that I decided that I was so impressed with what we were learning that I was going to write it down and try to publish it in hopes that other people might be able to hear some of what we had discovered.
So I wrote a meditation called "Living in the Light of Death". What I tried to build into that text was the idea that living in this way, living in the way we were living, may actually be the best way to live, the fully human way to live. Perhaps living a life enlightened by death was a better way for people to be in the world.