This document discusses end-of-life care and informed medical decision making. It shares personal stories of the author's family members' experiences with cancer treatment, hospice care, and navigating the healthcare system. The author advocates for improved medical records that can follow patients across care settings and include patients' end-of-life wishes to allow for more compassionate and dignified deaths.

1. Engage with Grace
A presentation by Regina Holliday
Be Ahead of All Parting a jacket painting for Bart Windrum
Thoughts on hospice, palliative care and
informed choice.

2. It is a common sight.
Look in the alley in a business district.
A pile of pallets is stacked beside the trash. Are they refuse? Are they at an end?
When I first saw the word
Palliative Care
I thought of these.

3. HOSPICE
The first time I heard this word was in whispered
conversation as my Aunt Bertha was dying painfully
from cancer.
I visited her at her home before she died at the age of 83.
She had chosen aggressive treatment.
I looked at her paper-thin skin and her drawn face.
I hugged her. She held me close and said:
“I would have never chosen this if I knew how much it would hurt. I don’t want to hurt anymore.”
She died one month later.

4. I know my Aunt Bertha was 83 when she died
because my Aunt Hilda gave me this book.
It is a Birthday Book. It rejoices in life.
My Aunt Hilda filled out the dates for our
entire family prior to giving it to me.
Life has a beginning and an end.
Both should be remembered and respected.
Aunt Hilda died in Hospice care at the age of 89.

5. Sometimes our friends and family
live a long full life before it ends.
Sometimes they die young.
I am Regina.
I am named after a great Aunt Regina
who died at the age of five from scarlet fever.
My mother embroidered this prayer that hung above my bed as a child.
Every night I prayed and was reminded that this night could be the last.
That death was part of life.

6. Do you know about Engage with Grace?
Alex Drane created this slide after losing a family member.

7. Every Thanksgiving we are supposed to engage in grace and ask these questions.
So we know in advance our loved ones wishes.
But my husband Fred and I did not know this.
We had to have this discussion in a hospital room.
Alone.

8. The Holliday Family Christmas 2007

9. Everything we ever wanted…
Resolutions January 2008:
1. Get Medical Insurance for the whole family
2. Get little Freddie into a special needs school
3. Fred gets a job in his field
4. Spend more time together as a family
5. Get a two bedroom apartment
Freddie’s
IEP Binder

10. Fred was happy with his new job.
But he was very tired,
He went to the doctor and was
diagnosed with hypertension.

11. During the months of
January, February
and
March of 2009,
Fred was in constant pain.

12. On Friday March 13th, We went to the ER because Fred was in so much pain .
We waited three hours before being sent home.

13. Fred was hospitalized on March 25th 2009
for the administration of tests.
On March 27th, he was told while alone that
he had “tumors and growths.”
He was scared and confused and did not understand.
His oncologist left town for the next four days to a medical
conference and was not reachable by phone or email.

14. What was the diagnosis? What were the treatment options? Would he get a pain consult?

15. We were told we needed to fill out a medical power of attorney and an advance directive, but as
we were District residents and Fred was hospitalized in Maryland they did not have the forms.
I would have go home and print them out.

16. This is my husband’s medical record.
I was told it would cost
73 Cents
per page
And we would have to wait 21 days to get a
copy.

17. “Go After Them,
Regina.”
April 18, 2009

18. After waiting for 5 days for a transfer
to another hospital for a second opinion,
We were sent with an out of date
and incomplete medical record
and transfer summary.
The new staff spent 6 hours trying to
cobble together a current medical record
Using a telephone and a fax machine.

19. This is the
vital clinical information
from Fred’s electronic medical record.
Presented in the style of
the Nutrition Facts Label.
Then painted on the wall of
Pumpernickel’s Deli in
Washington, DC.

21. Why did we get more help and answers from
Social Media
than from our local hospital ?
Within one day were in email contact
and then spoke on the phone.
By ten o’clock May 4th 2009, I was
talking on the phone with Dave’s
Oncologist about my husband’s cancer.
I am trying to talk with Christine Kraft and epatient Dave.

22. Going to Hospice.

23. We fulfilled our final 2008 resolution on June 11th 2009.
We moved into a two bedroom apartment so I could care for Fred in home hospice.
He died six days later on June 17th, 2009

24. This is the painting 73 cents.
This is the vital patient story, the social history , the sacred heart of Fred’s
ELECTRONIC MEDICAL RECORD.
This is the painting of a journey from hospital, to hospital, to rehab, to
hospital, to rehab, to hospice and finally home hospice.
Every transfer needed an advance directive and finally a DNR.

25. So, are you prepared for this?
Some of us will die well; held in loving arms as we end.
All of My Children." a jacket for Mindy Schwartz-Brown

26. "The Truth Upon These Shores" a jacket for Morgan Stanley-Kominers
from those that
Love us.
Some of will die far away

27. In either case,
we need an electronic
record that can follow us
and includes our final wishes.
“Paper Chaos” a jacket for Michelle F. Davis

28. It is hard enough to die;
It is hard enough to lose the ones we love.
We should have a system that allows us
to Engage we Grace and
"Grief" a jacket for Ann Becker-Schutte
have a death with dignity.

29. “Sacred Media” for Lisa Fields
Thank You
@ReginaHolliday