I’m sorry about what I did when I thought I was dying! (Happy 3 years cancer free)

Good news, everyone! I still don’t have cancer.

Depression almost never lifts all at once. I carried around a $600 CD of images of my messed up guts for 5 days, knowing that even though I couldn’t fully interpret them they spelled out my imminent death. Then my oncologist who I would literally go into battle for floats into the room in sparkling white coat with halo around his beatific face like some renaissance painting and makes the sign of the cross and anoints my forehead with oil and says “You are cancer free my child, go with god and I’ll see you in six months.” WELL THAT IS DEPRESSION LIFTING ALL AT ONCE.

Do you know how much I want to live? SO much. And I am sorry about all the sullen things I said and did over the course of the last 4-ish weeks. I wasn’t even a little aware that I was preparing myself for terrible news.

Family members: I’m sorry I totally turned my back on you. I withdrew from you, I didn’t answer your call, your text. Child, I am so so sorry I tried to squeeze about a decade of yelling at you (parenting) into 3 weeks. That was unfair. You are a gracious and forgiving small human and I don’t know what I ever did right to have gotten you.

Friends: Man, I’m sorry about picking fights. Sending bizarre missives in the middle of the night like, “my drugs are broken” and “how much money do you think is necessary to go die in a bus in Saskatchewan?” and “how do I start an LLC?” All I can say is being somehow even darker and colder than the person you befriended was my way of losing you before I had to eternally lose you. I’m real sorry. I like you so much and I want to see you more.

Body: I haven’t taken you to the pool or to yoga for a month because, let’s be honest, I was really mad at you. I didn’t feed you much either. Everybody talks about cancer like it’s a thing that comes in from the outside. But we know that it’s your cells. It’s this nuked out shell of an immune system to blame. Forgive me, somehow you persist and divide despite the daily prednisone nuking! You clump of little ATP-run miracles! You deserve much better. We’ll go swimming then sit in the municipal sauna with the old naked ladies and I’ll make pizza crust from scratch next time.

Hygiene and cleanliness: Let’s just be thankful for scrub service. Also, I know what that person in the Guinness Book of World Records with those fingernails that go curling on to the ground felt like in the first month of that endeavor. I get how that happens now. My days as a carbon-based life form are numbered. The human race won’t even be around long enough warrant mention in geological time. Why should I care about my nails? Well I cut and polished all 20 within an hour of getting home from the doctor. I did all the laundry. Because I am not going to die.

Thank god. Thank god. Thank you god. I’ll keep all those promises I made for at least the next 4 months.

Policy heavy. Palliative & curative & doing the right thing.

Here is the best thing on closed circuit television this week:

Atul Gawande and Amy Berman at Senate Special Committee on Aging
Start at 31:55 and end at 55:25. If you are as pumped as I am about a Senate hearing on aging I’m sure you don’t mind cueing the thing up yourself.

From Medline, a quick intro to the un-introduced:

Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms including

  • Pain
  • Shortness of breath
  • Fatigue
  • Constipation
  • Nausea
  • Loss of appetite
  • Problems with sleep

It can also help you deal with the side effects of the medical treatments you’re receiving.

Hospice care, care at the end of life, always includes palliative care. But you may receive palliative care at any stage of an illness. The goal is to make you comfortable and improve your quality of life.

Our health care system is based on the curative model of care. But you know what? I can’t think of one single patient in my given short tenure in ICUs that was curable. We patch people up. We send them back out into the world to manage their health. And we think maybe the next exacerbation will be the one that ends them. Or maybe we’ll treat the same COPD/heart failure 25 more times before the angels call him home. Maybe 100 more ICU days billed. 100 more days spent being woken up for vitals q.1 around the clock, catheter in the bladder, 6 or more needle sticks a day, uncomfortable bed, bad TV, worse food, and exponentially multiplying chances of acquiring a hospital infection.

When I have a very sick patient coming to the end of a long and painful (and expensive) road I am driven mad by the pain and sometimes harm we cause to extend life, or better stated, delay death. I’m a conscientious objector to placing naso-gastric tubes up the noses and through the pharynx of barely conscious patients on 3 vasopressors with ejection fractions of 10 percent. No tube feeding in the world is going to contribute to that person’s well being, but it will certainly hurt like hell. And we charge for the pleasure.

But hear the good news. We are doing better at starting to consider patient quality of life as part of care. The provision that got cut from the original ACA came back last year with CMS approving a reimbursement for end-of-life discussions. We work within the fee-for-service model. Talking about what you want from your care gets a ICD code and Medicare will pay your doc. This victory though seemingly small, is prized.

Next up for change, and this where Gawande and Berman come in as expert witnesses, is better access to palliative care and its use alongside curative care. These two care models act like enemies when I see an end-stage liver failure patient’s palliative care physician’s orders being DC’ed by the attending, then vice versa, and we go round and round. But they can cooperate. A patient with serious illness (heart failure, COPD, cancer) should not have to make the either/or choice of “fight” with aggressive interventions (multiple surgeries, 2nd and 3rd line chemo) or “give up” with comfort measures only (let’s be sensible and keep antibiotics and say a blood transfusion on the menu). Choosing what your goals are for the remainder of your life, if it’s 3 months or 15 years, and having the right to adjust that choice requires the care of both palliative trained and curative aimed practitioners. Most people want to be comfortable and home in their last bits of time. Pet their dogs and eat food not through a tube and smell flowers (no flowers allowed in the ICU). Very few people want to spend half a million dollars having their body flogged with futile care. But we do have to talk about it before it happens. And as Gawande says, with the same words used time and again by children of the intubated parent who don’t know mom/dad would want, it’s always too early to talk about it until it’s too late.

So proposed changes:

Professionally–better training for doctors and nurses in the provision and goals of palliative care. Before he wrote his book Dr. Gawande didn’t know what it was. Let’s get on that professional organizations, universities, health systems. Nurses IMHO are very progressive when it comes to palliative care. And great educators.

Politically–Some Medicare policy tweaks:

  • Medicare will not reimburse for any curative treatment after a patient elects hospice care. As a patient, that choice is scary. And unnecessary. Provision of both types of care could prevent overly aggressive and expensive care chosen only because the alternative was nothing more than symptom management. Middle ground, y’all.
  • Home care is only reimbursed when a person is terminally home-bound. Where do people go when they aren’t there yet, can’t afford home care, and can’t take care of themselves? The hospital. What’s more expensive and less comfortable than home care? The hospital.
  • If you should need hospice, Medicare requires a minimum 2 night stay in a hospital before giving approval for reimbursement.That seems like a typo, right?

I have no conclusion aside from knowing that progress is being made and being damn proud of it. And I’ve trumpeted my love for Atul Gawande across the land and sea, but standing ovation for Amy Berman. What a nurse. She writes beautifully, too.

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.

Making good news sad (it’s what I do) and a poem/incantation

I am cancer free, 1 year. A reprieve lasting who knows how long. Feeeeelings.

This week I was spared the ax and I saw it come down on strangers. Have I mentioned how odd it is to be consumed with concern for your own mortality when the study of mortality is consuming your days?

Borrowed from Micheal Swanberg, the only guru I’ll accept (if he’ll have me):

Let me respectfully remind you
Life and death are of supreme importance
Time swiftly passes by and opportunity is lost
Let us awaken
Awaken, take heed
This night your days are reduced by one
Do not squander your life.

“This is a lesson in you never know which day will be your last” –ICU preceptor

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At the community hospital we don’t generally see extremely sick patients. We see a lot of patients who are finishing a long battle with chronic lifestyle-related illness. At the end of their rope. Not many in our ICU are in the grip of acute critical illness. Yesterday I saw my first patient in that category. And as we were running three vasopressors, fluids wide open, assisting in placing central lines and arterial lines and monitoring central venous pressure and ever-tinkering with settings on the vent in a desperate attempt to keep our walked-into-the-ED-with-a mild-URI-a-day-ago patient alive, I had a little thought. This is when I want critical care in my life. This is what we do best.

We are no good for the end-stage congestive heart failure patient. We often prolong suffering in the quest for unattainable health, or in the absence of goal setting or planning. See Being Mortal.

But this patient needed all of the antibiotics, all of the drips, all of the chest x-rays, labs, cultures, all of the lines and vent and monitoring, all of the time of the best nurse on the floor. All in a desperate attempt to keep her alive long enough to recover. Which, I can’t stop worrying, was in vain. But even if, this was the patient that could have been given life back by the invasive, painful, and expensive interventions we have on offer in the ICU.

I don’t have an advanced directive at the hospital (don’t tell my nursing profs). I promise that If I had a chronic severely debilitating and worsening illness I would file a DNR/do not resuscitate (but preferably an AND/allow natural death). For now I don’t trust our system to distinguish the scenarios in which I want or don’t want a ventilator. I wrote out a directive and gave it to a loved one along with specific details about what quality of life means to me. If need be they can bring it to the bedside.

You don’t know when trauma or acute illness might give your shoulder a tap. If I’ve got a chance give it to me. And I want your best nurse.

PS- I know I’m on ethically shaky ground. This is my opinion on this day at this time, emotional and not all that well-informed. It’s Wednesday and I am wrung out already.

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

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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

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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

An inscrutable brand of optimism and another poem.

This year: some victories and some defeats, human race. But we are brave and we adapt. We recycle our garbage. We try again.

And if that doesn’t do it for you then know inevitably just like every dominant species before, eventually we’ll be gone. This beautiful blue marble will subsume us and our refuse and something new will get a few spins around the sun. (Then the sun will turn into a red giant and then a white dwarf I think and things kinda fall apart? Don’t worry we’ll all be dead.)

YES I AM an optimist. Don’t give me a hard time.

Between the time that I knew I had melanoma with not great survival statistics and my first surgery (a few weeks nearly a year ago) I would do some yoga every night and lay in corpse pose and think about dying. The uncoupling of my molecules and rearranging of my atoms and how that would be a good way to stay on in this world. I’m not gone I’m just different.

Weird mantra, right? Weird times. And I do believe it, the conservation of matter. I’m a gardener (though looking upon my gardens would make Martha Stewart throw up). Composting is a feature of life here and using it as a metaphor for purification and renewal scratches an itch. This is more a spring poem, but here it is in the spirit of the renewing the year.

Excerpt from Walt Whitman’s Leaves of Grass, “This Compost

3.
Now I am terrified at the Earth, it is that calm and patient,
It grows such sweet things out of such corruptions,
It turns harmless and stainless on its axis, with such endless successions of diseas’d corpses,
It distills such exquisite winds out of such infused fetor,
It renews with such unwitting looks its prodigal, annual, sumptuous crops,
It gives such divine materials to men, and accepts such leavings from them at last.