Why Can’t We Respect End of Life Directives?

It has been 20 years since the enactment of Oregon’s Death with Dignity law, and 30 years since I was involved in the creation of Hospice House, now Legacy Hopewell House, yet still we hear the swirl of emotional, philosophical and legal questions surrounding end of life issues.

Again I read recently about Nora Harris, the former librarian from Ashland who had filled out an advance directive and told family and friends she didn’t want measures taken to prolong her life after she started showing signs of early-onset Alzheimer’s disease. Even with this directive, she was being spoon-fed at the nursing home where she lived, and a judge ruled against her husband who said that’s not what he or Nora wanted, even though she could no longer communicate.

This is very close to home, although in my own case we don’t have a family history of Alzheimer’s. I’ve been concerned at how often physicians and nurses prefer to err on the side of what they consider caution, ignoring a person’s written refusal of medical care and putting that person on life-support in spite of instructions to the contrary.

The Physician’s Orders For Life-sustaining Treatment (POLST) and the electronic registry were developed following just such a case, one in which the person’s instructions were not found in time. This happened while I was still on the Advisory Council of the Center for Ethics in Health Care at OHSU. My own mother also was “coded” in defiance of her do-not-resuscitate (DNR) order, put on life support which then was discontinued at our request as soon as we arrived.

Along with the POLST, perhaps a person could video instructions and place the video with the documents. It might be harder for a judge to justify countermanding instructions if the person was looking him in the eye, albeit on film.

The distinction between “medical care” and “basic care” is specious, but it has been used here. The state is essentially forcing feeding, offering food so of course the mindless person opens her mouth.

Those who rule that an Alzheimer’s patient must be spoon fed contrary to that person’s stated wishes are committing a form of abuse, the more reprehensible in that the person can no longer speak for herself. Most facilities would continue to charge the family between $4,500 and $5,500 a month. If a family member chose to take the person home or to a Hospice, once the state has gotten involved, there could be endless wrangling. It is inexcusable!


A Belated Wedding Celebration Post

20246475_725008807686763_3145205600030122645_nIn this picture, our granddaughter Hannah, newly married to Soren Clark, lets Noah and Lily (her niece and nephew) have a close look at the Chinese Bride’s Necklace, now worn by four generations of us, which I hadn’t realized she would do. It was a joyful day.

We could hardly absorb the beauty of the day, the people, all as it unwound. There was music, clear air, wonderful friends.

The ceremony was held August 22 at Penybryn, where the Strong-Buell-Carr family has lived for 134 years. The reception was at the home of cousin Mabsie and Steve Walters at the end of the driveway.

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A Midsummer Night’s Gathering

81571AC0-EF21-4E6B-B7C3-6938811E5271Just as the Bellos family drove in bringing two pizzas and a cake, another car came in the drive, and it turned out to be John Bright, Tom’s 1949 Princeton classmate, come to say hello to his old friend. John is a member of the men’s group Tom started, and says he can still barely hear anything in spite of a cochlear implant, so conversation and interchange with friends is difficult. But even the brief minutes he was here got us this nice portrait.

The evening was sunny and warm. Some of us sat on the porch, and Tom elected to stay inside, out of the confusion, listening to the end of the Messiah, which just happened to be on our beloved AllClassical KOAC-FM. (You can get it anywhere in the world, by the way.) We came indoors to join him and cut the cake, anticipating by just a few hours our sixty-third wedding anniversary.32D4E159-B17B-4F05-96DF-72C7A1633C56

During the evening, we had a flag-raising on the newly placed flagpole out by the Tree House. It’s always had a prayer flag on it. The last one was brought from Nepal by our friend Kami Tenzing Sherpa, but it met its shredded end during the windy ice storm last winter. This new one will reach two ways, to the tree and the Tree House, and it will be a backdrop for Soren and Hannah’s wedding ceremony on the 22nd.
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In Our New Quarters

unnamed (1)The moon is full. I see it from my new bed in what used to be the study, high in the sky. It’s just released “the night-entangled trees.” We are home, working through the first complicated weeks after Tom’s foot surgery, getting ready for Hannah’s wedding. I just came on this set of reflections written toward the end of a long sea journey in 2015.

Things we look forward to about getting home

The sound of rain on the roof.

Hugging Hester and everybody.

A lady on the elevator said,

“And to think I’ll be making my own bed next week!”

Doing some things in a new way..


It would be healthy to

write five times a week, to

paint five times a week as we have done.

have help making beds, buying gas, groceries,

cleaning Whistler’s cage,

pruning shrubs,

putting the garden to bed,

bringing in plants that will die in the winter.

I’ve had a lovely birthday song

from our friends and servers:

the Indonesian version.

Nancy and Kirk, friends we’ve made who

sit at the table for two next to us,

have shared my cake,

deftly cut  by Andi.


I understand Tom’s feel of being

cut out by not hearing.

It’s not hard to relay talk, table to table,

and he appreciates it.


Daniel and Carol have come by,

other friends we’ve made

sharing teaching, SE Asia and more,

and understood our pleasure.

I urge Tom to tune out the prattle,

boring endless talk from other tables.

We have our liqueur here,

but I’m not sure he can tune out enough

to relieve that strained look on his face.

There are times I think I seem ridiculous to him.

He says not.


What he most wants

is to get to bed.

* * *

All kinds of ways you maintain your sense of proportion. We get an emailing from the families of Bailey Meora and Sidney Shumacher who were killed in the earthquake in Nepal. There is nothing that will let us forget those young women or that event. The email thanks us for our contributions. It is all part of us. Even in this suspended segment of our lives, they are with us and so is Finn, our nephew who was their friend and for whom this loss will be part of his life forever.

This poem came from the Poetry Foundation. I discuss it with another friend who is writing lots of rhymed poetry and is trying to figure out why so many people he respects urge him to quit trying so hard to rhyme! I read this first not even realizing it not only was rhymed but was a sonnet.

Armed Services Editions

By Jehanne Dubrow

My copy of The Fireside Book of Verse

is as the seller promised—the stapled spine,

the paper aged to Army tan—no worse

for wear, given the cost of its design,

six cents to make and printed on a press

once used for magazines and pulp. This book

was never meant to last a war much less

three quarters of a century.

                                             I look

for evidence of all the men who scanned

these lines, crouched down in holes or lying in

their racks. I read the poems secondhand.

Someone has creased the page. Did he begin

then stop to sleep? to clean his gun perhaps?

to listen to the bugler playing taps?

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Upheavals and Changes

I think it’s called “with a heavy heart” that I cancelled today our long-planned fall and IMG_0063winter trip by train and ship to Australia and New Zealand. It was going to be a stretch even in the best of circumstances, and now it would be impossible. But Tom and I will talk over other possibilities when the time is right. Now, we’ll concentrate on getting him healed and walking again. Hester, Julia and Hannah came and sang for him yesterday. I’ll ask Tommy to post this, just to let people know how grateful we are for friends’ support.

image1 (64)Tom has been in Good Samaritan Hospital in Portland for one week. A sore on his right pinky toe turned angry, and it had to be amputated a week ago. He has been in good spirits, but his recovery has been hampered by limited blood supply to his legs and feet. He is, after all, 89 years old, 90 in August.

We hope he will be going into a skilled nursing facility for a week or so of therapy so he can come home and resume a normal, albeit revised, life.

Thank you for notes and healing thoughts! Over the weekend I came home to shower, do laundry, and sleep. I was for the first time reassured that Tom wasn’t in a life-threatening situation. It looks as though the blood vessels in the leg are going to be sufficient to heal the wound caused by the removal of the toe.

The vascular surgeon has decided not go in to clear up the clogged places, feeling that the healing is proceeding alright on its own. And then soon, maybe tomorrow, we head for a rehab center somewhere for we hope less than a week. The goal is to get home with hospital bed and walker, and a chair that helps him get up and sit down.

Hester spent the night Saturday night. We’ve been trading off. At first it was because Tom was sometimes confused, and also moved to standing faster than the bed alarm could alert staff. So things are looking up.

image1 (62)Discovered yesterday that the sculpture in the beautiful chapel at Good Samaritan where we are is called “Corpus” and is by Fred Littmann. That chapel was being planned when we were first planning Hospice/Hopewell House in the eighties.

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The Tree House

IMG_1938 (1)For the first time quite like this, we sit out here in what we call the Tree House and anticipate the “heat wave.” It will have a hard time vanquishing the cool breeze coming down the hill through the woods.

This morning when I had finished taking most of the ivy off the Tree House trunks, I realized how much we had built into that treasured place. Horseshoes found in the woods, from my father’s pony, Bud, are on the uprights. Those in turn are our own trees, and the rafters, railings and braces are pieces of old split-rail fence we found here when we came in 1965.image2

The little bronze owl totem sitting on the south rail is one I was given when I received an Aubrey Watzek award at Lewis & Clark twenty years ago or so, and the rhododendrons in bloom just beyond him are wild ones transplanted there by my grandfather.

image3The little crouching wiseman just below the owl in the totem is echoed by the troll we had carved last year in the tree stump next to the structure. The whole was never planned but there it is, full to the peak with blessings, needed now. We started it right after 9/11, partly I suppose to help us through that time. And it goes on.

(This was for my Writing About Birds class that came here for lunch Friday after a morning at Audubon down the hill. We never got past the porch.) 

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All in Each Others’ Arms

Last year about this time, a time of birthdays, I wrote this for Emily, our eldest grandchild.

FullSizeRender (22)Dear first born
of my firstborn daughter,
we whirl in gentle
of love and understanding
imagine lives without each other
remember how it was
knowing how it will be after
but all the while holding
that which will never be lost
never be forgotten.

Images of you in my father’s arms,FullSizeRender (20)
of you first walking
in grass with flowers
even as he was going out,

swirl now with your babies

all in each other’s arms
for good.

June 5, 2016
For Emily, on the first birthday after she bore her first daughter.

IMG_2320Now, I put it together with a painting we bought yesterday, “Music in the Night,” a small landscape by Barbara Stafford-Wilson, from her current show at PDX gallery. She did it from memory, of a night they heard a fisherman singing in Cadgwith Cove on the South coast of Cornwall.

Apple blossoms are in bloom now. I add them and the smell of apple blossoms opens another layer, a sheen of light, shade, timeless.

The realities blend no less because they blend only in my mind.

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