I suppose that I’ve always been intrigued by end-of-life issues. So many early deaths in my family. I volunteered for hospice decades ago, as a follow-up bereavement counselor — something that I thought was important for post-loss health, and something that I could do on my own schedule, on my phone, when my children were small.
I became much more interested in the realm of end-of-life care when my step-mother Jewel was dying of lung cancer. It was a brutal experience for everyone involved. If there was something that an oncologist could do wrong in treating someone with cancer far advanced at diagnosis, hers did — and refused to discuss other options with me. My niece had also been a hospice volunteer and drove around for those four months with a box of materials in her car, my brother reached out to a social services agency, and I visited every few week-ends. All of our efforts to provide my father with help and to offer both of them with a more humane experience were for naught. Jewel was convinced that to decline aggressive treatment would be “to give up.”
A few years later, when I was a chaplain intern over the summer as part of my training for ministry, I saw much of the same on the medical intensive care unit of the hospital in which I trained. So many tubes and machines, so many aggressive efforts, so many patients and family members unwilling to let go. Of course, none of us can predict our reaction in similar circumstances — but I used to come home at night (or early in the morning), collapse, and say, “If anyone ever utters my name in the same sentence as the a phrase which includes that particular floor, being me home immediately!”
As a pastor, I have seen many people seek hospice care only a day or two before death is likely to come, and skip any form whatsoever of palliative care. While there is much assistance available to ease the passage from this life to the next, physically and emotionally and spiritually and mentally, few people are aware of the options, and many share Jewel’s view: “Can’t give up!”
A few weeks ago, I was privileged to attend an outstanding conference on end-of-life care, and to share it with good friends: one a trained chaplain and two of them nurses — one of them now caring for her 90+ year-old father at home. In the next few days, I’ll share some of what we learned.