Engage with GraceA presentation by Regina Holliday

Thoughts on hospice, palliative care and informed choice.

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Disclosure SlideI have presented or painted before these venues and companies:

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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 CareI thought of these.

HOSPICEThe 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 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.

I know my Aunt Bertha was 83 when she diedbecause 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.

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 Reginawho 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.

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

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.

The Holliday Family Christmas 2007

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’sIEP Binder

Fred was happy with his new job.

But he was very tired,

He went to the doctor and was diagnosed with hypertension.

During the months of

January, February and March of 2009,

Fred was in constant pain.

On Friday March 13th, We went to the ER because Fred was in so much pain .

We waited three hours before being sent home.

Fred was hospitalized on March 25th 2009 for the administration of tests.

On March 27th, he was told while alone thathe 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.

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

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.

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.

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

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.

This is the

vital clinical informationfrom Fred’s electronic medical record.

Presented in the style of the Nutrition Facts Label.

Then painted on the wall ofPumpernickel’s Deli in Washington, DC.

I am trying to talk with Christine Kraft and epatient Dave.

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.

Why did we get more help and answers from

Social Media than from our local hospital ?

Going to Hospice.

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

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.

So, are you prepared for this?

Some of us will die well; held in loving arms as we end.

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Some of will die far awayfrom those that

Love us.

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In either case,we need an electronic record that can follow us and includes our final wishes.

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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 have a death with dignity.

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Why can’t we ask Hallmarkto make hospice cards?

Would that help us talk about end of life?

You can use images to inspire better communication

#HospiceCards

Become a reality

Thank You@ReginaHolliday

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