Something that I have thought about, and I suspect that many of you have also, is what happens if my cancer should relapse, for me getting leukemia for the third time. Each time a cancer returns the statistical chances of beating it are reduced. This happens for a variety of reasons. My body will be older. My body and immune system will have been weakened by chemotherapy, radiation, multiple other drugs, and by the disease process itself. The cancer cells that return (in fact they have never left but remain sequestered in some hidden part of my body) tend to return in strength. These cells are the strongest, the most adaptable, the most resistant because they have survived all previous attempts to eradicate them. It’s survival of the fittest at its worst.
This is not to say that I cannot prevail once more. But it does mean that this battle will be harder than the others. On the positive side, by now perhaps a new and more effective treatment may have been developed. Or not. But what if I do not prevail? What if the tide begins to turn against me? What if we reach a point where we have tried all the fighting strategies available? If I come to the point where nothing is working and the cancer is winning, what do I want my family and healthcare team to do?
Do I want to be admitted to an intensive care unit? Do I want to be connected to a ventilator? Do I want to receive transfusion after transfusion? If I stop breathing, do I want a team of doctors, nurses, and technicians to rush into my room, start CPR, use a pair of defibrillator paddles to shock my heart into some kind of rhythm again?
Another option at this point might be to remain at home. I could be with my family, lie in my own bed with my dog at my feet, look out my window at those familiar green trees. We could set it up so that nurses, chaplains, social workers would regularly show up to assist my wife and family through these last stages. If I were in pain, I would receive medication. If I had difficulty breathing, I could be administered oxygen. If I developed an infection, I could receive antibiotics. This is what we call hospice.
So there are at least two options. But the most important point is that I will have decided which option to take. I will have made that choice ahead of time, made the choice when I was not in terrible pain, when I was not gasping for breath or was no longer able to think clearly. I will have made my own decision. My family would be be left with the very difficult decision of what to do next, of trying to guess what I would have wanted them to do. This is what “advanced directives” or “living wills” are all about.
I have been there. I have been in both capacities – as someone diagnosed with a terminal cancer, and as a nurse having to carry out those last wishes, whatever they were. I have worked both in the ICU and in oncology. Believe me, this is another area in which cancer can be a blessing. The cancer diagnosis brings us closer to our mortality. We all have taken pause to consider the possibility, at least, that we may not survive this. While working in the ICU many years ago, I stood on the sidelines while families agonized over this decision, especially when the patient was taken early and unexpectedly by a major stroke, heart attack, and serious trauma. For cancer patients our future seems foreshortened and we have confronted the possibilities.
I think we all have a responsibility almost to confront the possibility of losing our battle against the “beast”. We need to spare our loved ones this potential added suffering. We need to consider all possibilities. We need to make our own decision, need to give direction to our oncologists and the healthcare team.
This is just my opinion. But again I am a survivor and a nurse with twenty years of experiences. I have been witness to more deaths than most people. I have seen good deaths and bad deaths. And my wish for everyone would be a “good death”.
The reason I am thinking and writing about this today is the continued hysteria and misrepresentation I hear related to the healthcare reform debate. I suppose that I thought after countless clarifications in the media about this particular issue, the debate would shift back to more reasonable aspects of the national discussion. But just yesterday I saw one young woman at a town hall meeting asking about what she perceived as “Nazi elements” in the reform bill. Worries about the prospect of euthanasia if the government has any role in healthcare (as if the government did not already administer Medicare and the Veterans Administraion) seem to have developed a life of their own. And Sarah Palin fans the flames of this hysteria with the talk of “death panels”. What “death panels”?
The fact behind these fictions is merely a provision on one of the three bills that, if you wanted to make a separate appointment with your physician or oncologist to discuss advanced directives or a living will, then Medicare would pay for it. This is just a discussion between you and the doctor of your choice so that you can make the decision which is right for you and your circumstances. You can change or alter your decision at any time. There is no conspiracy here, no Nazi-style extermination plan, no death camps, no death panels, no one knocking at your door.
These end-of-life issues are personal, intimate, and, at times, painful. It is a disservice to all of us with cancer to have these issues needlessly misrepresented in order to serve questionable political agendas. The saving grace of the controversy is that it does offer us an opportunity to educate ourselves about these critical questions. Hopefully in doing so we will discover some measure of peace.