Welcome to our blog -- yours and mine.
When Ellen Goodman, former Boston Globe syndicated columnist, approached me several months ago about joining her in a proposed weekly blog on Boston.com, I broke my promise to myself not to accept any new writing obligations this year. (Breaking a promise is rarely a good thing, and I feel a little embarrassed admitting in the very first sentence of this new blog that I recently did that -- especially since I am supposed to be an expert on "ethics"?!)
I first met Ellen in the process of chairing the Massachusetts Expert Panel on End-of-Life Care from 2009-2011. My work with members of the panel gave me a chance to reflect on more than 25 years of clinical and organizational experience I have had as a doctor, first as a primary care physician and more recently as director of Ethics Programs and director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center.
At the heart of our final report is a very simple idea: people in the last phase of life should be taken care of the way they would want to be. Unfortunately, a major finding of our report was that in Massachusetts today, our health system is not even remotely trying to ensure that this happens.
Our report, Patient Centered Care and Human Mortality: The Urgency of Health System Reforms to Ensure Respect for Patients' Wishes and Accountability for Excellence In Care, focused almost entirely on shortcomings in our health care system. Far too often, a patient's wishes are never even elicited in time for those wishes to guide care. At other times, they are known but not adequately respected.
But there are two dirty little secrets that we did not address in any detail in our report, which we can?t entirely blame the health care system for.
First, many of us are not even sure what our wishes are. When we are healthy, there?s no urgency to figure them out. When we are sick, we often have our hands full just trying to get better. If our doctor or anyone else raises the issue, many of us change the subject -- "I'll cross that bridge when I get to it."
Second, even if we have thought a lot about our wishes, we often haven't told anyone else -- not our doctor, and no one in our family. "Maybe tomorrow", we say, but the truth is, as my colleague Dr. Judy Nelson has pointed out, "It's always too early until it's too late."
There is very little chance, when one day our mortality looms large, that you or I will be taken care of the way we would want unless (1) we actually have figured out what we do and don?t want; and (2) we have told someone else -- family who may need to make choices on our behalf, and also our doctor.
Doing these two things does not need to be depressing -- quite the contrary. The real issue is not "death", it's life, as renowned 20th century humanitarian Dr. Albert Schweitzer pointed out so well:
Something deep and sanctifying takes place when people who belong to each other share the thought that every day, each coming hour, may separate them. In this awareness we always find that the initial anxiety gives way to another deeper question: Have we given each other everything we could? Have we been everything we might have been to one another? Thinking about death in this way produces true love for life.?
--Dr. Albert Schweitzer (1875-1965)
To help us do these two things, Ellen recently launched, with many wonderful partners, The Conversation Project, an exciting new initiative to help all of us prepare for choices that we, and everyone we love, will likely one day face. I urge you all to go to their web site and read the rapidly-growing stories of people from all walks of life who are beginning to have "the conversation." But in the meantime, while the exciting growth of The Conversation Project is consuming so much of Ellen's life, a cherished loved one of her own is entering the final stages of a long illness. It is clear that she needs Ellen more than ever. It hardly seemed right for Ellen to give "blogging" about end-of-life care higher priority than ensuring that her own loved one receives the care she needs. So while Ellen will join from time to time as a "guest blogger", it's now just me.
And here's where you come in. My goal in most of my postings will not be to give you a definitive point of view on any subject. My main goal instead will be to spark you to reflect and then, I hope, contribute your own ideas and experiences through the comments section of the blog.
End-of-life care is the only issue in all of health care that every single one of us, and everyone we need, will one day face. We truly are all in this together. So I hope you will write early, and write often, so that we can learn together. One day, it should become universally true that when we lose a loved one, no matter how sad we are, we can nonetheless look back and say "at least s/he was cared for exactly the way she would have wanted."
So thanks in advance for being my co-bloggers!
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