It’s 4:00 AM and I can’t sleep. There is a problem weighing on my mind. It’s not just my problem. Sooner or later, it might be yours too.
My mother died a few hours ago. Her body is still lying on her bed, which has been set up in the living room since her last hospital visit. She passed surrounded by family, as was her wish. The funeral home will take her in the morning, after her other children (there are seven of us) and grandchildren have an opportunity for a last goodbye.
She is not alone. One daughter is sleeping on a sofa at the foot of the bed. Another is in a recliner a few feet away. They have spent many devoted nights in those same places, helping with mom’s night-time care needs on this final journey. This will be the last night.
Mom departed this life on her 99th birthday. By no accident, her birthday is the same day as her wedding anniversary. There was a ritual between my parents for this occasion. For every birthday / anniversary my father would present mom with a corsage just like the one she had worn with her wedding dress. After he died seven years ago, we kept the tradition on his behalf. Mom lies now with her hair fixed, in a pretty dress, corsage at hand. So, for those who believe in such things, mom tonight rejoined her beloved decked out for an anniversary date.
Which brings me to the problem. Although mom’s final moments were ultimately peaceful, the hours leading up to that point were not. She was in pain. And not ordinary pain. It was agony. Horrible, Although she was so weak that she couldn’t speak or swallow and could barely move her arms, this pain had her writhing and begging wordlessly for relief.
This should not have happened. It was preventable.
Mom was enrolled in a hospice program. For those unfamiliar, hospice is end-of-life care that promises immediate access, 24/7 support, and most importantly, prevention of suffering. Hospice is a Medicare benefit available to terminally ill patients. To the extent clinically possible, hospice is supposed to prevent pain.
Hospice failed my mother. Terribly.
When the medications in the provided hospice kit failed to alleviate mom’s suffering, we called to get liquid morphine. I don’t know why morphine wasn’t in the hospice kit to begin with - it’s a hospice “gold standard” for pain control. One of my sisters speculated that morphine was omitted because mom’s medical record shows she once got a mild rash in response to that medication. If that’s true, it is gobsmackingly stupid. What is the clinical significance of a rash at the end of life?
Hospice staff were briefed on the situation by telephone and issued a “stat” morphine prescription. As applied to medical orders, “stat” means “immediately” and “without delay” and signals an intervention that is to be carried out at once, ahead of virtually everything else.
So far so good.
My sister offered to speed the process by picking up the medicine at a hospital pharmacy a few minutes away - but this request was denied. The hospice program insisted on use of its preferred pharmacy. We were told that the preferred pharmacy would deliver.
We were NOT told that the preferred pharmacy was over fifty miles away and that delivering the medicine to ease my mother’s suffering would take 5 ½ hours. This was five ½ hours of family gathered around mom’s bed, helplessly witnessing her agonizing ordeal, trying to soothe her with means at hand — but failing — and all of this like a slow-motion bad dream with no idea when or if the promised relief would arrive.
When the medicine finally arrived, its value was obvious. After one dose, mom relaxed. An hour later, when she passed peacefully and without further struggle, she had opened her eyes and — for the first time in a long time — she smiled.
What kind of twisted medical-industrial bureaucracy bypasses local nearby pharmacy resources to send a stat order for emergency pain medication to a pharmacy over fifty miles away?
This was not a one-off mistake or accident - it was made clear that use of this distant pharmacy was hospice policy.
That means what happened to my family could happen to yours.
Putting a pharmacy business deal ahead of patient care in a hospice pain emergency is unethical and unprofessional. It should also be illegal. If you agree, perhaps you will be moved to let your legislators know what you think should be done.
And if someone you love needs end-of-life care, make sure the hospice provides all the medications that might be necessary up-front. Waiting for delivery may be forgivable for pizza, but it is intolerable for pain.
