While it is true that we need to be informed of all of our health care options, I am not sure that we are all capable of making decisions that are truly doing ourselves a kindness. In other words, just because there are options for aggressive therapy doesn’t mean a treatment should be pursued, and just because a treatment is more likely than not too risky doesn’t mean we should avoid it. I think we need to be careful in our decisions, but most of us don’t understand the intricate details behind the options set before us. And even if we do, sometimes too much information can make informed decision making more difficult. Furthermore, as the ethical landscape changes, the fight for autonomy vs. distributive justice is becoming more one sided towards avoiding frivolous spending in the name of autonomous decision making. We are inundated with reports about hospital costs being out of hand, which help sway our opinion about treatment, etc.
To me there is a fine line on both sides of the argument for end-of-life care, but we need to be careful because the wrong statements leads to reactionary rhetoric that just does more harm than good.
Author, ‘A Clergy Guide to End of Life Issues’
We live in a world where information is at our fingertips. You can download just about anything and have access to it almost instantly. We take control of so many aspects of our lives — we stay “informed” about our money, our financial investments, and perhaps even our health issues. But the one area where we are not informed is around issues that have to do with what choices we have as we near the end of our lives or when we are diagnosed with a life-changing illness or condition.
Amy Berman, an RN, has a form of breast cancer that is not “treatable.” However, she is living life in the manner in which she wants to live it while managing her cancer with the help of her doctor. She took charge of her health care and, lucky for us, wrote about it. You can read her story in the Washington Post.
I was very taken with her honesty and her decision to use palliative care instead of aggressive care. However, the part that stayed with me is this: “I want every patient facing end-of-life decisions — which, when you think about it, eventually will be all of us — to have access to the kind of open communication I’m receiving. Each patient deserves to understand the diagnosis, the probable course of the disease and the likely timetable. Each deserves to be asked about personal goals, and each deserves help with making treatment decisions.” Part of a palliative care consult includes asking about personal goals, so that your treatment is matched to your goals, and not the goals of the medical protocol being recommended.
In order to have access to the kind of open communication she had, you need to know all of your options, including what is possible and what isn’t and what the side effects and the long-term prognosis are. You also need to know how to plan for the inevitable. There is a terrific opportunity to do just that coming up in June in Chicago. Compassion & Choices (“the leading architect in building bridges to improve care and expand choice at the end of life through support, education and advocacy”) is hosting a national conference, The Heights of Compassion, Bridges to Choice: A New Horizon for End of Life Liberty. I will be there as a presenter and believe that this conference will provide you with knowledge that will empower you when you have to make choices about end of life and life-changing conditions.
We can never know enough about what our options are as we approach the end of life and as we deal with life-changing conditions. We need and should want to be as educated as possible so that when the time comes, we will make the best decisions we can because we will have the information needed in order to make those educated decisions. Amy is lucky. As a nurse she is several steps ahead of most of us. We better start getting our lives in order and become better educated about our options.
Knowledge is power. There is no knowledge more important than to have knowledge about what all of your options are as you approach the end of your life or as you make decisions about life-changing conditions. It is your life — and you are entitled to be treated in the way that you want to be treated. But, if you don’t understand what that means and what your options are, you will be making decisions in a vacuum. Do you really want to do that when it has to do with how you are treated when the time comes to make these decisions?