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Posted by Dr. Lachlan Forrow February 4, 2013 06:00 AM
It dawned on me years ago that one of the hardest problems we all face in making choices for care in the face of a serious, life-threatening illness is embedded in our language.
The way we use words like "intensive care" and "heroic efforts" can dangerously distort our ability to ensure that people -- our patients, and the people we love -- are cared for in the best possible way: the way they would want.
I have often found myself sitting with a daughter whose frail, elderly mother, perhaps suffering from advanced cancer, or dementia, or heart failure, has been admitted to our hospital with pneumonia. It is clear that Mom is likely to die almost imminently unless we transfer her to the ICU, and place her on a respirator. Often, she is likely to die during this hospitalization even if we engage in what we call "heroic" ICU efforts. And always, given her medical issues, she is certain to die in the not-too-distant future, even if she survives this latest bout with pneumonia.
But with Mom's life at the brink, almost everything inside us wants to cry out, "Yes, Mom needs intensive care!" Too often, that choice has meant that Mom died in the ICU, connected to machines unless/until an agonizing decision was finally made that this was "enough, let's stop". Or if the choice to "stop" is never made, then Mom's last moments of life are spent undergoing unsuccessful CPR, even when none of the doctors really expect it to "work".
But what daughter (or son), faced with such a choice, doesn't want Mom to receive "Intensive Care"? Who among us -- whether family members or professionals -- doesn't want to look back and say that we were "heroic" in our efforts to help someone "live"?
On the other hand, who among us, looking back on Mom's last days and hours, spent hooked up to machines in an alien environment, would remember those as days and hours that were the way Mom wanted?
Today, as growing numbers of medical centers have superb inpatient and outpatient "palliative care" teams, we have other choices to offer. When we know that mortality is approaching, when we ask -- starting as early as possible -- "how would Mom want to spend the time she has left?", we have skilled teams who can work with Mom and her family to control symptoms, ensure comfort and dignity, and take her home if we know that is where she would want to be. Or often even better, if we have really planned well in advance, we can keep Mom at home in the first place, where we know that the vast majority of Americans would prefer to spend their last days.
But our language still gets in the way. Foregoing the ICU still means rejecting "intensive care" and "heroic" efforts on Mom's behalf.
I wish we could rename ICU's. What if we called them "Intensive Cure Units"? If there is a problem that Mom has that we can fix/cure, then maybe an "Intensive Cure Unit" is the right place. Maybe we can't cure her underlying cancer, but maybe there is a short-term, fully-reversible problem we can fix (it might be pneumonia). Maybe Mom would give anything for that possibility, because there is a new grandchild Mom has been hoping to see. Maybe she would consider the long-shot ICU efforts worth it.
But what if there is obviously nothing that we can "cure"? Maybe even nothing that we can really fix? Or what if, even if we "fix" today's problem, Mom is virtually certain to have another one similar problem very soon, or one that is even worse? Or what if Mom would say that what the ICU would have to put her through in order to try would be too much.
Or what if Mom says she would simply prefer to stay at home?
Even so, doesn't Mom need intensive care? Doesn't she deserve "heroic efforts"?
Yes, but they need to be the right kind.
I now often begin by saying up front something like "Your Mom is seriously ill, and it's obvious to me that she needs "intensive care". The question is what kind. We could take her to the ICU here, but sometimes that isn't the kind of caring that a patient really most wants and needs. Another approach is to provide "intensive care" at home. It's a different kind of intensive care from what we do in the hospital -- it's focused on her comfort and dignity, and support for you as her family in the time you have with her. We could talk with a home-based palliative care team, or hospice, about what that would mean. It can sometimes take pretty "heroic" efforts, but the hospice teams we work with are ready for that -- it's their mission, and why they love their work."
Sometimes this conversation happens when Mom is already on a respirator in our ICU, clearly going to die soon. If she can't survive off the respirator, but would give anything to have her last moments at home, in rare cases we have even been able to arrange with a home hospice team to transfer Mom via ambulance home, where when the respirator is stopped she can have her last moments peacefully, with whatever medications it takes to ensure comfort, surrounded by her loved ones.
Home can be Mom's "Intensive Caring Unit". And the efforts from everyone -- professionals and family -- are often at least as "heroic" as any I've seen in our hospital's ICUs.
And everyone involved looks back afterward and knows that "Mom was taken care of just the way she would have wanted."
Every Mom deserves "intensive care" and "heroic efforts". But we need to make sure they are the kind that she wants and needs.
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About the authorLachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »
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