End of Life 3/3

breath air

Earlier this week, as a way of remembering Howard Gray immediately after his death, I flipped through a few of the emails I’ve received from him.  One of the first that popped up, written a couple of years ago, suggested that I read When Breath Becomes Air by Paul Kalanithi, M.D.  It looks as if I didn’t respond to the email, but I think that I had already read the book at that point.

Lucy Kalanithi, M.D. was the other main speaker at the Dayton conference a  few weeks ago.  The book (which I am not going to review here) details her husband’s experience with lung cancer; Lucy finished it after he died.  Paul Kalanithi was a brilliant young neurosurgeon when his diagnosis disrupted his life, and forced him to shift from physician delivering bad news to patient on the receiving end of a devastating report.  It’s a must-read for anyone whose life has jolted from one of ordinary dailiness (not that Paul Kalanithi was ever ordinary in the sense of the word which most of us understand) to the high drama of end-stage cancer.

Lucy spoke about the challenges she and Paul faced after his diagnosis, including

  • facing one’s own mortality
  • questions of identity ~ who am I now?
  • facing death and uncertainty
  • and the tension between living and dying.

That last one I remember so well from my stepmother’s stage 4 lung cancer diagnosis.  How do you deal with in-your-face issues of serious illness and likely imminent death and simultaneously forge a life among your family and friends?

Lucy left us with two poignant reflections, the latter emerging from the Q-and-A period and much discussed at out table.

The first had to do with Paul’s statement of desire: “I want everyone else to take care of Lucy so that she can take care of me.”  What a powerful recognition of, on the one hand, the needs of the primary caregiver, and on the other, the need of the patient for someone who can focus her life entirely on his need for care and support, to which everyone else can contribute by providing for the caregiver.

The second had to do with their conscious decision to have a child whose father would probably not live to see her grow up, whose father might not live to see her at all.  For the Kalanithis, their daughter was, and is, a life-giving source of joy and, while some shuddered at the thought of the courage required of her mother, most at our table could appreciate the powerful desire for love to break forth in the form of the birth of a child, even, or perhaps especially, in the heart of a sojourn toward death.

Please read this important book.  It illuminates an all-too-common experience, and may be the trigger you need to start a much-needed conversation with a loved one.

 

End of Life 2/3

Steve Pantilat, M.D. was the keynote speaker for the conference entitled Soul Work on Living and Dying that friends and I attended a few weeks ago.  Dr. Pantilat is a renowned expert on palliative care — care which he describes as “focused on improving the quality of life for people with serious medical illness.”

I’m going to offer a few highlights of his presentation (any errors are mine, straight from my notes), and suggest that you read his book, Life After the Diagnosis.

life after cover

One: We tend to think that we must choose between quality and quantity of life: we must choose either every treatment offered us to prolong life, or refuse treatment and die. This is a false and damaging dichotomy, as much care is available to make life in the face of illness more palatable — and often longer.  Dr. Pantilat advocates for everyone receiving palliative care from a team of caregivers within six weeks of a diagnosis of metastatic cancer.

Two: A terrible question: “Would you like us to do everything possible?”  Of course; who is going to sat “no” to  question like that?  I have been with both parishoners and family when that question has been asked, and it has been very difficult to walk the conversation back with what is always my next question: “Could you please explain the likely consequences of a ‘yes’ answer?”

A good question: “How are you hoping we might help?”  People may have very specific goals related to pain management, surviving until a family event takes place, travel plans, where they want to be when they die — but an open-ended question is needed for those hopes to surface.  My own commentary: People are often too intimidated by the presence of a physician at a hospital beside, or too frightened by the death they have not discussed with anyone, to say, “I know I’m going to die soon, so I think I’ll skip the clinical trial, and go home to be with my family instead.”  We have to ask, not assume, what someone’s priorities are.

Three: People are fearful that talking about these issues will destroy hope.  In fact, talking about the questions increases hope.  Other good questions include, “What are you hoping for in your future?” “What worries you most about what lies ahead?”

Four: A most unfortunate statement: “There’s nothing more we can do.”  In fact, there is always something that we can do in terms of helping someone address their concerns, companioning them, and alleviating their feelings of abandonment.

Five: It’s a myth that the goal is to have a “good death.” I would take issue with his statement that “grief is not mitigated by age and a ‘good death,” but his overall point is a good one:  The goal is to live a good life.

Next post: Another of our speakers.

End of Life 1/3

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.

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