Risa Denenberg

>She was admitted to the hospital just before Christmas after swallowing a lethal dose of Tylenol, but she survived with medical intervention. Her reason? She was tired of being chronically sick, worried about her impaired mobility, afraid that she would have to leave her home. She felt that this was her best option for having some control over her last months. After she was stable, she was placed involuntarily on a psych hold, awaiting a court date to see if she could–as we say–be released safely back into the community. In the hospital for more than 4 weeks, she had a number of typical complications, including a foul case of antibiotic-induced diarrhea. She was pretty miserable, but sharp as a tack. She had had an interesting life, but most of her friends were dead, and she was not in touch with any family. She had paid her rent through the end of March, her hedge-bet in favor of going back home. Her medical problems qualified her for hospice care, but she was afraid to even talk about hospice, as she felt “they might hold it against me”. She felt ashamed and inhibited, eager to talk about her life, but hesitant to express her present state of distress. She was released to a nursing home on January 19th , court date still looming over her.

A social worker visited her at the facility, felt that she was depressed and recommended ongoing counseling. He based this assessment in part on a self-administered survey in which she circled yes to “feeling lonely, sad, blue, or depressed”; “anxious or worried”; and “having thoughts of dying or committing suicide.” She also assented to the following: “feeling like something bad is going to happen”. This was on January 22. She died of chronic heart and lung disease on January 24th in the nursing home. Thankfully, her advance directive was honored.

On February 2, this note was placed in the medical record: “Request that the restrictive order be dismissed. Patient has expired.”

>The house was dark and cluttered, close to what I would have to call dirty, smelled of cigarettes and fried fish. Her partner told me she hadn’t really woken up all day, but I was welcome to try to waken her. He pointed. After drifting through the kitchen and into a closet, I asked him for some directions. That’s how dark it was. He walked me through three rooms to the very back of the house and flicked on a shaded lamp that might have had a 10 watt bulb in it. She was in her own bed, in her own bedroom, which was completely dark, heavy curtains drawn, thick flannel pajamas on her bony flesh. It was a cocoon, a cave, an inner sanctum. It was warm and she was warm and, surprise! There were three cats curled up in the bed with her. A soft comforter, a soft bed, a quietness that was so seductive I wanted to crawl into bed with her. She didn’t say much. I didn’t say much. I didn’t listen to her lungs or look into her mouth or palpate her belly. I just sat on the edge of the bed and felt her warmth. She looked at me, started a sentence or two, neither went anywhere, and closed her eyes. This was a deep and wonderful sleep.

I remembered how much my mom resented the hospital bed with its flimsy plastic mattress and hard cold metal railings. It was so hard to keep her clean and dry that I had one delivered, but she hated it, hated it, hated it. I still wish I hadn’t let it cross the threshold. Even though she never slept in it, it must have made her feel like she was in the hospital, when really, she was home. People often say, I want to die at home in my own bed.

I called hospice. Please cancel the hospital bed, I said.

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>This week I met with the family of a man in his late sixties who had had undergone emergency surgery for a bowel obstruction and then had a cardiac arrest after surgery and now was in a vent-weaning facility. Second wife, three adult children, one adult grandchild. The patient was lying in bed attached to the ventilator by his tracheostomy, otherwise appearing serene and unbothered. Completely unresponsive, and no wonder, he was receiving a considerable load of sedating medications. When the sedation level was lowered, to test his potential to breathe on his own, I am told that his appearance changed totally, breathing rate increasing into the 50’s, anxiety and panic transforming his expression. Still his physician remained hopeful that he was making some progress towards weaning from the vent.

The family was lovely and in agreement about wanting what was best for this man. They had no doubts that he was receiving excellent care. One of his daughters was a social worker who worked in a nursing home who told me that she often helped her elderly patients to fill out advance directives. The patient and his wife both had spoken about what they would not want done in an event just like the one I am describing. He had a written, legally recognized advance directive saying that if a trial of artificial ventilation did not suffice, he would not want prolonged ventilation, would not want dialysis, would not want to be fed through a tube. But here he was, after a long hospitalization, now in a hospital devoted to long-term ventilation care, sedated, with a trach, on a ventilator, with a feeding tube.

The wife told me that he had an “ominous” feeling about the surgery and had reminded them of his advance directive as they wheeled him into surgery. The family agreed that his health had been very poor over the past year, due to chronic heart, lung, and kidney disease, and that he often talked about not wanting to live if he would have to reside in a nursing home. They had only recently been told that if weaning from the vent was successful, he would face another 6-9 months of rehabilitation during which he would need to be highly motivated to relearn to walk and do ordinary self-care activities. Knowing him, they doubted that he would have this motivation. He had been miserable during cardiac rehabiliation after a previous heart attack. In fact, it is not an exaggeration to say that this family was wracked with guilt that they were doing exactly what this man had told them he would never want.

How did this happen? Of course, I have changed the details of the story, but it is one that I frequently come across in my work. I don’t know the answer, but I do think part of the problem is that we fill out advance directives (those of us who do this task at all) with our minds. Emotionally, we have no sense of what we are saying or doing. We do not go that extra mile to really imagine being in the situation we are saying no to. The persons that we ask to speak for us in our extreme vulnerability have no idea what we are really asking of them. And then on top of this, no one along the way sits down and describes how the “rest of the story” is likely to unfold. Families get told that “the kidneys are doing better today” or that “he has a good chance of breathing on his own if we give him a few more weeks”. The most likely outcome–that he will go from the hospital to a vent weaning facility for four months and then to rehab for 9 months and possibly never return to being able to dress himself–is not revealed. It’s the combination of “piecemeal” optimism, inability to predict outcomes very well, and the failure to find out from the family what an acceptable recovery really would look like for this individual that combine to create unbearable pressure against following the directives that we agree to adhere to in the name of patient autonomy.

Perhaps we all lack the courage of our convictions. Or perhaps there really is no such thing as autonomy, no value in advance directives. I am thinking today, at least, that there really is no such thing, it’s an illusion that we are all complicit in. Outcomes, decisions, stories, families, healthcare providers, lab results, God, CT scans, emotions, legacies, factors innumerable … somehow combine in an unpredictable forcefield along a path that no one controls.

Today, I can’t think otherwise. How else can I understand this story?

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But I finally got it. And it was not too late. The stuckness was suffocating me. Causing memory loss. Self-loss. My important work set aside, perhaps to be lost, like thoughts mislaid or excommunicated.

And so I asked myself: Can I do this? Not just change jobs, but change my entire life again? I had to remember the feelings I had lived with for so many months, not feeling good about myself; my gifts being stifled and unwanted; feeling rejected, angry and depressed. And it was not too late. I had it in me to leap across the continent. Still. Amazing to have forgotten. More amazing to remember.

Memory, but of what? The who I am and where I can be her. Losing sight of myself is why I have failed in relationships, failed in jobs, perhaps even in friendships. In that sense, I am grateful for being able to feel so much discomfort, rather than being able to stifle it. I was thrilled to recover the instinct to locate myself across the divide of dissociation where presence takes flight, and towards the path of being my own companion again. Accompanying myself as scenes shift, as pressures mount, as difficulties arise. I am grateful that I want this life and have not settled for less.

This week I came across these jotted notes, “Strategy for a job interview”:

· Feel a strong desire within
· Be humble
· Be aware
· Be appreciative
· Be reflecting
· Use your imagination
· Don’t know everything
· Be curious
· Be attentive
· Feel a deep love for adventure
· Share the spiritual wisdom that you possess

Not bad advice for living. And here I am in Seattle, settling into a life here, liking the job very much, a bit overwhelmed, very grateful.

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