My long connection with end-of-life care, its costs and consequences, took on a whole new dimension for me with a recent personal experience.
Several months ago, I rushed back to Portland, Oregon from Washington, DC after early January's fiscal cliff debacle, desperately trying to get home in time to be with my mother in her final hours of life. I was too late. She passed away when I was in the air somewhere over the Midwest. I was overwhelmed, but also grateful and relieved. She passed away where she had lived for the past six years, her grandson holding her hand and her daughter-in-law having spent the night sleeping next to her on the floor. Caregivers who had become part of her extended family were comforting her. On the morning of January 3, my mother decided her time had come and she died.
My family and I were surprised by this turn of events. This 88-year-old lady had just been out with us, visiting our home and with other friends and relatives on Christmas Day. So I was extremely surprised when I received the call from a caregiver that her condition had deteriorated, recommending that she be taken to the emergency room. Because of the circumstances, with me, her only child, being 2,300 miles away in Washington, there was a moment where my instinct was, "Send her to the emergency room, stabilize her," so I could get home and assess the situation.
Unfortunately, but not unreasonably, her personal physician was out of town for the New Year's holiday. Likewise, her grandchildren were away for a family wedding. Luckily, I was connected to an on-call doctor who understood both her condition and her wishes to avoid extraordinary life-prolonging measures. While her condition had deteriorated much faster than I could have imagined, an ambulance ride to an emergency room would have been an uncertain journey. To the extent that she was aware, the shock and trauma of an institutional setting, even in the best hospital, might well have not only hastened her passing, but her last memories would have been ones that she abhorred -- the ICU, tubes, procedures, lights and strangers.
I'm the "death panel" guy, tagged with that title when the bipartisan work that I had done for years to empower families facing end of life decisions morphed into "death panels" during the health care debates. I've researched the topic, introduced and refined legislation, held countless meetings and have given numerous speeches about the importance of end-of-life planning. My family was prepared and yet I came within an eyelash of having my mother's core wishes violated, denying her the passing of her choice. I was not thinking clearly, contending with emotions one is never entirely prepared for as well as some unusual but not uncommon job stress. I almost slipped into the health care system's default mode that too often performs procedures that the patient and family don't need and frankly, are contrary to their wishes. I would have regretted it always. Instead, my mother's wishes were honored, and she passed gently, without pain, feeling secure in the knowledge of being loved.
As I deal with the details and the emotions of her death that are still being sorted out, I return to Congress with a renewed urgency about the importance of end-of-life planning. It is critical to empower every family to make sure they are able, in difficult and emotional circumstances, to manage end-of-life decisions. From young people driving cars, to older citizens subject to the vagaries of accidents, heart attacks or just the natural rhythm of life when bodies wear out and it's time to go - we all deserve to have a say in who is our "proxy." We should decide who makes decisions for us, so that our wishes are fulfilled whenever we are unable to decide for ourselves, whether at end of life or a temporary condition from an accident. Families need the tools and ability to work with health care providers to stop the insanity of healthcare on auto pilot, late-stage, extreme medical procedures, operations and interventions that not only can destroy the quality of life, but often shorten it.
It's time for Congress and the Administration to provide the opportunity for every American to plan for their end of life so that their wishes are fulfilled. We must determine who represents us when we can't represent ourselves. We must also inform and equip health care providers who are helping families in times of crisis, strengthening patients' and families' ability to deal with end of life issues.
We owe it to ourselves and our loved ones to get this right. I almost learned this lesson again, in a tragic way.
Congressman Blumenauer is the author of HR 1173, the Personalize Your Care Act, which ensures that Medicare patients have the opportunity to speak with their doctors about their own end of life care choices. Today is also National Healthcare Decision Day, and resources for your own conversation about care choices can be found here: http://www.nhdd.org/public-resources/.