It should come as no surprise that religion and faith often take center stage when someone is facing an advanced illness. Dr. Cicely Saunders, the founder of the modern hospice movement, identified spiritual or existential suffering as one form of pain. Any hospice worthy of the name employs chaplains who are trained to respect all faith traditions (including the lack of faith itself) as they help patients and families find meaning and peace in dying.
They say that God works in mysterious ways. In my role as a hospice and palliative medicine doctor, I recently observed three very different aspects of that mystery at work.
I first met Eleanor, a 70 year old African American woman, when her oncologist asked me to help manage the signficant pain she was having from advanced ovarian cancer. There really weren't any disease-modifying options available, her doctor told me, and he was hoping that Eleanor would soon enroll in hospice. Despite some reservations about pain medication expressed by her husband and children -- "we don't want her to get addicted" -- they accepted my advice, and Eleanor's pain was quickly controlled. She left the hospital smiling and calling me "sweetheart." A few weeks later, though, her pain came roaring back. Her kidneys had quit and her mental status was changed. Tests revealed even more spread of her aggressive tumor.
I had lots of discussions with her husband and her children. They wrestled with two contradictory statements Eleanor had made. They'd heard her say both "I don't want to be on machines" and "don't give up on me." As they struggled with what to do, her son played an increasingly dominant role in the family meetings. "She said 'don't give up on me,'" he repeated, "and I have faith." The family closed ranks behind that position, and so Eleanor got everything we have -- a prolonged ICU stay, several intervals on a ventilator, a brief period of dialysis, and similar interventions. She died in the ICU during a "code blue" when her heart finally stopped.
In Eleanor's case, faith seemed to worsen, not relieve, her suffering. Whether it helped her family find meaning and peace is something I'll never know. But she reminded me of the old line (from the TV show "M*A*S*H," I think) that God does answer all prayers, but sometimes the answer is no.
Faith played out in a different way for Bob, a 60-ish school teacher with stomach cancer. I wrote about Bob in a February 2011 blogpost entitled "Lows and Highs." At the end of a long day, I heard Bob playing guitar and singing, "Lord, I have reverence for you." A few months later, Bob was readmitted to our palliative care floor with cancer pain out of control. He expressed deep faith that he would defeat the cancer and seemed not to hear the message from his oncologist that he would receive no more chemotherapy. Part of Bob's faith was his belief in alternative medicine. Every day he drank large quantitites of a spinach-colored smoothie and swallowed capsules of mushroom extract and tumeric. But he also accepted our help with pain and other symptoms, although not to the full extent that we thought was needed to get him symptom-free. Over a few weeks he faded bit by bit, and in his last few days his wife stopped the supplements, allowed us to use symptom-control drugs at full doses, and enrolled him in hospice. By all accounts his death was a peaceful one.
In Bob's case, faith appeared to be a bridge, a support that allowed him to parse what was happening to him and control what he could control.
A 30 year old with a young wife, young children, and advanced cancer is nothing but a tragedy. But Keith seemed to transcend all that, accepting treatments without complaint but also accepting our help with pain control. When it was clear that death would happen soon, he voiced great satisfaction with the idea that he soon would be face-to-face with Jesus. He was sad about leaving his family behind, but he said he felt blessed by divine love and comforted by the knowledge -- which for him was absolute -- that he would see his wife and daughters again. Sitting by his bedside after he'd lapsed into unconsciousness, Keith's wife said much the same thing. She was proud of his role as husband and father. She, too, was confident that they would see each other again. Keith remained unarousable for several days before his quiet, peaceful passing.
For Keith, it seemed to me, faith was an essential component of his late-life and dying experience. It smoothed the way for him and for his family.
So perhaps it's true that God works in mysterious ways. But my experience as a hospice doctor tells me is that it's our faith in God that works in such varied, unpredictable, and mysterious ways.
Thursday, July 28, 2011
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