William G. Bartholome, MD, MTS

ACOR EC-Group Posts: June, 1999
— Final Post & Rememberance —

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Date: Tue, 1 Jun 1999 12:16:40
Subject: Connie re Narcotics & Constipation; MJ

Connie,

I inherited a gene from my mother that causes my entire gut to go to sleep and obstruct when I take any form of narcotic. We tried every kind of bowel program under the sun and found that the only way I could take narcotics is if I also took the drug Narcan by mouth. Narcan is a potent anti-narcotic drug and is given to people with narcotic overdose by vein to rapidly reverse the effects of the drugs. However, it can be taken by mouth. When it is, it does not have any effect on pain relief, but does allow the gut to continue functioning. I am taking one mg. of Narcan twice a day. It is very expensive since my insurance company refused to pay for it, but it has been a godsend. Check with your doc.

MJ is a wonderful anti-nausea and appetite stimulator. Highly commend its use for any and all of you unless you have severe lung disease that would preclude your smoking anything.

bill bartholome

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posted by Al:
Date: Sat, 3 Jul 1999 19:37:17
Subject: Dr. Bill

Al,

Thanks for checking up on me. I have unofficially dis-enrolled from the group. I would appreciate it if you would post this update. I've closed up my office and am not using my computer at home much.

Update on Bill & Pam...

Al sent a message requesting an update on our situation. For some wonderful reason, we have had three weeks free of any major storms. It has been a wonderful "respite" from the rapid downhill spiral we seemed to be experiencing.

That is not to say our situation has been stable. I continue to gradually worsen. My weight is down to a ludicrous 135#. My stamina continues to wane. My chest involvement has caused progressive worsening of shortness of breath and cough. I am now using continuous supplemental oxygen at night to help me rest more comfortably. My pain continues to gradually escalate, esp. in my neck and shoulder/arm. I am now using 100 mcg/hr fentanyl patches in addition to my previous pain medications.

As death approaches, we continue to encounter new levels of this process primarily in the area of psychological and spiritual challenges. We are working with a social worker and a pastoral counselor and friends to explore these issues. Many relate to our relationship and trying to discover ways in which it can undergo radical transformation, but still endure somehow rather than end with my death. Obviously this is an area filled with mystery and the unknowable, but we find ourselves drawn to its exploration.

My daughters and I have completed work on a three volume scrapbook project for them to share with my future grandchildren that we might be blessed with. Pam. the girls, my family, and friends have banded together to provide me constant company and care giving. I am truly blessed. I continue to experience this time as a special gift. I am filled with grace each and every day...the grace I pray will see me home.

Peace & love,
Bill & Pam

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Bill passed away on August 2, 1999

A post to the EC-Group afterwards:

(My sister, Deborah, is on a bioethics list with Dr Bill Bartholome and this was sent to her list today. I know that all of you wanted to know when he passed away....Mary)

Those of you who have known and cared about Bill Bartholome over the years will want to know that he died this morning.

This forum and the friends he made here were important to him. His wife Pam often accused him of using his writing here and the relationships he had with all of you as "pain control." And perhaps, in the most true and poetic sense, he did.

I knew Bill only about two years, after coming to the University of Kansas from Boston, but quickly learned he was a legend around here. For 16 years, he's spoken his mind and rattled the bars for change-institutional change and personal change-tirelessly trying to make this place and himself more humane. Around the hospital, Bill always wore the blue coat that the maintenance workers wore rather than the ubiquitous doctors' white coat, refusing to emphasize, in such visual terms, the power differences with co-workers and with patients. With his illness, he cultivated both spirituality and humor. From the time he was diagnosed, he began collecting frogs-stone, wooden, cloth, plastic-that people who cared about him gave him, each one a talisman against his disease. By the time he stopped going in to work a couple of months ago, he was wearing or carrying in his blue pockets more than 40 frogs every day.

Bill's office, a big room lined, stacked, and packed with books and journals in pediatrics, ethics, literature and poetry, has walls covered with plaques and framed prints of his teaching awards. Though he was often a thorn in the side of hospital administration, a mixed blessing to some of his colleagues, he was always a valued and trusted teacher and mentor and a steadfast friend.

During the 5 years since his diagnosis, Bill devoted a lot of the energy to helping the rest of us see what a gift a real acceptance of our mortality can be, the way it can teach us to live. A few weeks ago, when we were talking on the porch of his home, I mentioned a scene from the movie Three Coins in a Fountain, quoting the interchange between a newly diagnosed patient and his physician:

Patient: "There is no preparation for a death sentence, is there?"

Doctor: "There's a lifetime."

...to which Bill responded, "Amen."

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