Three daughters gathered in the hospital room where their mother lay dying. This had been long expected, and the two daughters from out of state and the one who lived nearby sat together around her bed – reminiscing, sharing stories, laughing, crying, and singing their mother’s favorite hymns together. The hospital staff came in periodically to offer emotional support and medication if needed. The kitchen had supplied a beverage-and-snack cart. The door was closed. Many hours later, well after their mother had stopped breathing, when the daughters were finally ready, they emerged – tearful, thankful at the peaceful end – and as one of them said, “Although we are sad to lose our mother, we know we did what she wanted, so we are okay.”
A girlfriend, son, and son’s girlfriend gather in the Intensive Care Unit at the bed of a man who is intubated and unresponsive. A day earlier, while wielding a chainsaw, he had collapsed from a massive heart attack. He underwent CPR at the scene, but there was prolonged lack of oxygen to the brain in the process, and he had suffered severe brain damage. If he survived the hospital stay, he would require nursing home care for the rest of his life – possibly a feeding tube, possibly would never speak or recognize family and friends again. What would he have wanted in this situation? No one knew. He had never discussed his health care or seen a doctor, despite recent weight loss and the presumption that the chest pains he had been experiencing was heartburn. He left no living will or advance directive. No one could recall even a passing discussion of “what to do if….” Now a son, barely into his twenties, an on-and-off girlfriend, and an assortment of friends were being asked to make decisions they were not prepared to make.
We plan so thoroughly for so much else in our lives – for weddings, for childbirth, for anniversaries. Why don’t we prepare for death? Why don’t we talk freely and easily about an event that is inevitable? Despite major advances in medical care, the death rate remains one per person. How would we want the scenes described above to happen for us, and how would we want to advise our loved ones so they can grieve our loss, but not be wracked by guilt about decisions they did not want to make?
Choices That Matter is a new, local initiative on the Blue Hill Peninsula to help promote community-wide, thoughtful discussion about our wishes for care when faced with challenging illness, chronic disease, and dying. Choices that Matter is a collaboration among Healthy Peninsula, Healthy Island Project, Island Nursing Home, Blue Hill Memorial Hospital, Hospice Volunteers of Hancock County, and many other volunteers. Activities that are in the works include a two-session workshop “Optimizing Healthcare Choices for Difficult Times” to be offered April 2 and 9 at the Island Nursing Home in Deer Isle, and April 12 and 19 at the Blue Hill Public Library. Drs. Barbara Sinclair (clinical psychologist) and Susan Ostertag (MD) will be leading the discussion at this free workshop. To register, obtain further information, or request additional workshop dates and times, please contact Healthy Peninsula at 374-3257 or firstname.lastname@example.org.
-- Susan Ostertag, MD