Warming the engine/Thank god for Oliver Sacks

For a while now I’ve been scribbling notes and spending long hours before sleep and short minutes before getting out of bed figuring on how I will tell the story of my absence. Where I’ve been (literal and figurative).

I’m not consuming much fiction these days, but can slide through clinical tales like a hot knife through butter. So to warm me up a bit, and to remind you that I still think and breathe, I’ll share a passage from the late Oliver Sacks’ book The Man Who Mistook His Wife for a Hat (from the introduction, Losses):

…But it must be said from the outset that a disease is never a mere loss or excess–that there is always a reaction, on the part of the affected organism or individual, to restore, to replace, to compensate for and to preserve its identity, however strange the means may be: and to study or influence these means, no less than the primary insult to the nervous system, is an essential part of our role as physicians.

This is a perfect prologue. You know I had cancer. And that is the least interesting part of the story I wish to tell. The compensating, the strange and destructive means by which I strive and fail to preserve my identity is where the drama lies. And that, my friends, was completely overlooked by both me (RN) and all of my care providers.

Where is Oliver Sacks when you need him? In print I suppose. Thank god.

Poetry Monday

Saturday I had the pleasure of listening to Margaret Mohrmann give the keynote at the UVA’s End-of-Life conference. Blow. Me. Back. The weight of the subject matter and her nimble language. The stories steeped in years of experience ecclesiastical and medical. Is frank compassion a thing? I think it may be her thing. One of the two times she made me well up (for my patients, for my loved ones, for me, for my fellow RNs & MDs, for humanity):

A Blessing for a Friend on the Arrival of Illness
by John O’Donohue

Now is the time of dark invitation
beyond a frontier that you did not expect.
Abruptly your old life seems distant.
You barely noticed how each day opened
a path through fields never questioned
yet expected deep down to hold treasure.

Now your time on earth becomes full of threat.
Before your eyes your future shrinks.
You lived absorbed in the day to day so continuous
with everything around you that you could forget
you were separate.

Now this dark companion has come between you.
Distances have opened in your eyes.
You feel that against your will
A stranger has married your heart.
Nothing before has made you feel so isolated
and lost.

When the reverberations of shock subside in you,
may grace come to restore you to balance.
May it shape a new space in your heart
to embrace this illness as a teacher
who has come to open your life to new worlds.
May you find in yourself a courageous hospitality
towards what is difficult, painful and unknown.

May you use this illness as a lantern
to illuminate the new qualities that will emerge in you.
May your fragile harvesting of this slow light help you
release whatever has become false in you.
May you trust this light to clear a path
through all the fog of old unease and anxiety
until you feel a rising within you,
a tranquility profound enough to call the storm to stillness.

May you find the wisdom to listen to your illness,
ask it why it came,
why it chose your friendship,
where it wants to take you,
what it wants you to know,
what quality of space it wants to create in you,
what you need to learn to become more fully yourself,
that your presence may shine in the world.

May you keep faith with your body,
learning to see it as a holy sanctuary
which can bring this night wound
gradually towards the healing and freedom of dawn.

In the ICU, where we keep you from dying. (Whether you might want to or not)

image

I am back in the clinical setting, and boy howdy has there been some moral distress on the unit in the past days. When a patient is extremely frail or ill and does not respond to all available therapy, when they’ve reached the end of their rope, the limits of modern medicine, further curative care (which often is invasive and painful) becomes futile. The medical team calls a conference with loved ones to decide the course of action. Read below from the Jecker article and bear with me.


From Medical Futility, Nancy S. Jecker, PhD, University of Washington School of Medicine.
What is “medical futility”?
“Medical futility” refers to interventions that are unlikely to produce any significant benefit for the patient…Futility does not apply to treatments globally, to a patient, or to a general medical situation. Instead, it refers to a particular intervention at a particular time, for a specific patient. For example, rather than stating, “It is futile to continue to treat this patient,” one would state, “CPR would be medically futile for this patient.”

Why is medical futility controversial?
While medical futility is a well-established basis for withdrawing and withholding treatment, it has also been the source of ongoing debate. One source of controversy centers on the exact definition of medical futility, which continues to be debated in the scholarly literature. Second, an appeal to medical futility is sometimes understood as giving unilateral decision-making authority to physicians at the bedside. Proponents of medical futility reject this interpretation, and argue that properly understood futility should reflect a professional consensus, which ultimately is accepted by the wider society that physicians serve. Third, in the clinical setting, an appeal to “futility” can sometimes function as a conversation stopper. Thus, some clinicians find that even when the concept applies, the language of “futility” is best avoided in discussions with patients and families. Likewise, some professionals have dispensed with the term “medical futility” and replaced it with other language, such as “medically inappropriate.” Finally, an appeal to medical futility can create the false impression that medical decisions are value-neutral and based solely on the physician’s scientific expertise. Yet clearly this is not the case. The physician’s goal of helping the sick is itself a value stance, and all medical decision making incorporates values.

This paternalistic bend on discussion with patients and caregivers–that whether or not an intervention is futile is a call to be made by a medical or inter-professional team–well I’m not a fan. She suggests that the use of the words “medically futile” might disrupt the discussion. In my experience doctors and nurses may tailor language to be more or less jargon-y based on a patient/family member’s experience and education, but there is no reason be opaque when if comes to describing that an intervention will not, in the HCP’s opinion, be of benefit. And it may cause pain and harm. “Medically inappropriate” sounds snobby and skirts the issue–what are we doing here? What would your loved one want? Here is what we can offer (palliative options, less invasive options, what have you). And most importantly the decision is in the hands of the patient or their proxy. For better or worse. (This exempts surgeries, etc, where a level of medical stability is required).

We owe it to them to paint the full picture then allow them the right to choose. In my experience people can handle a lot more than we give them credit for.

The place to make the change is not at the ICU bedside where grief has a hold of the wheel. Encouraging end-of-life preparation for those who are sick and those who will be tapped as caregivers should be normalized in the primary care setting (which, ehem, was sacrificed to pass the ACA).

Dr. Bill Thomas, aging, and de-depressing the nursing home

image

Nobody is excited to be in a nursing home. Same deal for most nurses. In a terrible turn of events, a place with exploding need for professional nursing care is the most maligned of places to work. And if you’ve spent time in one, visiting an elder or maybe a loved one enduring a long recovery, you know why. It’s dense with suffering. Everyone in their own personal purgatories. And the food is yuck.

Borrowed from a chapter in Gawande’s Being Mortal and continuing the theme of the poem “Letters from a Father,” I wanted show off the work of Dr. Bill Thomas, who has gained regard for transforming the nursing home. The man has an earth shattering philosophy: In order to thrive, humans (even sick and old humans!) need something to live for. Life needs meaning. His first nursing home experiment brought in pets of all sort: birds, a variety of house plants, some dogs and cats. The residents were given autonomy, responsibility, and credit to care for them. And the residents thrived (so did the animals and, miraculously, the houseplants) Now you see the connection with “Letters.” Now I’m weepy because it is so simple, people. The needs of humans are beautifully simple.

Dr. Thomas, hippie in the most beneficent understanding of the term, calls his program The Eden Alternative:

What are the other components, what are the other criteria of the Eden Alternative?

Number one, the organization begins to treat the staff they way they want the staff to treat the elders. Very important. Long-term care has a bad history of treating its staff one way, not so nice, and expecting the staff to treat the elders a different way.

Number two, the organization brings decision making back to the elders and to the people around the elders, so that they have a voice in their, in their daily routine and their life. Crucial, crucial to re-injecting meaning into peoples’ lives.

Third, they’ve taken real steps to make the place where people live rich in plants and animals and children. I want the people to be confused when they walk through the door. What kind of place is this? I mean, there’s kids running around and playing and there’s dogs and there’s cats and there’s birds, and there’s gardens and plants and … I want them to be confused. This can’t be a nursing home. Right. It’s an alternative to the nursing home.

And finally, there has to be a commitment to ongoing growth. We believe in the Eden Alternative that even the frailest, most demented, most feeble elder can grow. And that the young person who maybe has a difficult home life or is living on the edge of poverty, they can grow. That the organization commits itself to human growth. And those words, human growth, nursing home, they’ve never gone together before and with Eden Alternative they can.
(source)

From a resident:

“Well, if I want to make things easy and comfortable for everybody, the only thing I should do is die. And having George participate in my care and having other people do the same, calls me into life. It says, despite your losses, despite your limitations, you belong here with us and we want you to stay.” — Nancy Mairs

Poetry from the AIDS Epidemic, another for World AIDS Day

Excerpt of “Atlantis” by Mark Doty
About his partner with AIDS

 6. NEW DOG
Jimi and Tony
can’t keep Dino,
their cocker spaniel;
Tony’s too sick,
the daily walks
more pressure
than pleasure,
one more obligation
that can’t be met.
And though we already
have a dog, Wally
wants to adopt,
wants something small
and golden to sleep
next to him and
lick his face.
He’s paralyzed now
from the waist down,
whatever’s ruining him
moving upward, and
we don’t know
how much longer
he’ll be able to pet
a dog. How many men
want another attachment,
just as they’re
leaving the world?
Wally sits up nights
and says, I’d like   
some lizards, a talking bird,
some fish. A little rat.
So after I drive
to Jimi and Tony’s
in the Village and they
meet me at the door and say,
We can’t go through with it,

we can’t give up our dog,
I drive to the shelter
—just to look—and there
is Beau: bounding and
practically boundless,
one brass concatenation
of tongue and tail,
unmediated energy,
too big, wild,
perfect. He not only
licks Wally’s face
but bathes every
irreplaceable inch
of his head, and though
Wally can no longer
feed himself he can lift
his hand, and bring it
to rest on the rough gilt
flanks when they are,
for a moment, still.
I have never seen a touch
so deliberate.
It isn’t about grasping;
the hand itself seems
almost blurred now,
softened, though
tentative only
because so much will
must be summoned,
such attention brought
to the work—which is all
he is now, this gesture
toward the restless splendor,
the unruly, the golden,
the animal, the new.

Mark Doty, “Atlantis” from Atlantis: Poems. Copyright © 1995 by Mark Doty.
Source: Atlantis (HarperCollins Publishers Inc, 1995)