Death, Dignity or Immorality, Peace

My heart is heavy this morning as I share sad news.

Several months ago I wrote about my friend Paul, who had been diagnosed with pancreatic cancer and had decided to refuse treatment so he could, instead, battle it his own way. I learned this morning that Paul has died, and my heart is broken. This world has lost such a good man, at too young an age (only 61).

I learned this news shortly after hearing from my patient-advocate-colleague Betsy Gardiner. She linked me to an op-ed in yesterday’s Washington Post written by a gentleman who watched his mother suffer from the inhumane treatment she received from the Medicare-based, money-focused American healthcare dysfunction.

I was struck — big time — by the contrast in the two experiences. Both have died. But the outcomes are entirely different.

Paul was a man of many talents and interests. He and his wife, Annette, have been friends of mine since the early 1970s — and I’ve followed Paul’s marvelous career during these years. He was well-respected, admired, and a very giving man — a loving husband and father who also donated a great deal of his time to his church and other worthwhile causes.

Paul died the way he lived. When he was diagnosed and told he had only weeks to live, he decided against the messiness and pain of treatment that probably wouldn’t work for long anyway. He chose to go home, get his affairs in order, and spend time with Annette and his daughters instead.

Paul died with the DIGNITY of a man who knew he had lived his life to its fullest, surrounded by the people he most loved in this world.

The stark contrast with the story told by Richard Pretorius in the Washington Post is startling. Mr. Pretorius’ mother died in a nursing home at the age of 86 from cancer, too. Her end was violent, as she screamed and vomited blood, and was mostly ignored by the staff that should have been trying to make her comfortable. A number of mistakes and misjudgements were made during her last few weeks and the bottom line from both the state of Virginia and the hospital which cared for her was — why did Mr. Pretorius care as long as his mother had died anyway?

Yes. Both Paul and Mrs. Pretorius have died. Both are mourned. The world is a sadder place having lost them.

But the chasm between the experiences for both of them, and their loved ones, is huge.

Annette and her daughters (and the rest of us who loved Paul) will always have the satisfaction and peace of knowing Paul died with dignity.

Mr. Pretorius will be forever haunted by the his mother’s final moments. Usually when someone of her age, in her state of poor physical health dies, we consider it a blessing, even in its sadness. But Mr. Pretorius may never feel any peace or satisfaction.

Dignity at the time of death is a blessing to the patient, but perhaps even more so, it is a blessing for the loved ones left behind.

A reminder: American healthcare is not about health or care; it’s about sickness and money. That this dysfunctional system would strip one of its deserved citizens of something as basic as dignity should be illegal. It’s most certainly immoral.

I hope Mr. Pretorius can take his anger and frustration to a place where he can get revenge in the form of an improved experience for future patients and their loved ones. If he can do that, he may be able to find that peace that he and his mother were stripped of.

And that’s what sharp patients can take away from today’s blog posting. Using a bad experience to improve the system for others can be incredibly cathartic. I know this first hand. It’s what I try to do every day. And yes, I have found peace.

(Good-bye, Paul. I will miss you.)

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