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).

Where is my mind?

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I have really enjoyed dropping off the face of the earth for a few days. The academic schedule suits my glutton-for-punishment alternating with complete and total slacker personality. Of course I can be as maniacal at slacking as I am at work. Over the past week I read a 700 page novel in time to have a meeting of the introverts’ book club. You know–two people at a bar who read the same book. Reading a beautiful novel that has nothing to do with health care then going to a bar, an entirely selfish act for a wife and mother, is my best shot at spiritual renewal.

Early in graduate school our class was introduced to a mindfulness curriculum. It intends to create embodied, resilient, and compassionate providers. Man, I thought, this nonsense is going to burn off like so much morning fog. Then came the infamous mindfulness retreat. There was gentle yoga and meditation to the sounds of jungle rain. No wait that was just me crying uncontrollably. Mindfulness:1, Melissa: 0.

fetal-position-550x550

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I was not ready for mindfulness. It is powerful medicine. What was wrong with my foremothers’ ways of coping with life’s ups and downs? Beating carpets, aggressive scrubbing, tea.

Complementary and alternative medicine (CAM) is a booming area of research. What interests me is finding the best way to provide access to the modalities, germane to many folks aren’t hanging out on Maslow’s lowest 2 or 3 spots, to people who are unfamiliar with CAM and have a list as long as my arm of more immediate food-shelter-safety concerns. The people at Common Ground Healing Arts are making some impressive forays, working in public housing projects and a prison, and showing good results in terms of better controlled diabetes and lowered BPs. I came to them last winter with a note from the cancer center and they took care of my penniless self, too. I want to talk to them about their work. I kind of love them.

So to review, meditation/yoga/acupuncture, the whole package, is a significant thing. I buy it okay, I’m on board. I’m just not all the way ready. So practitioners please be aware that efforts to induce mindfulness may create a paradoxical reaction. Also, it’s okay if your way of clinging to mental health like hang in there kitty is reading a big book, drinking three fingers of whiskey, and talking to your friend about this beautiful line of prose, did you catch that leitmotif, and oh the point is that half of love is yearning.

Happy holidays all, do your thing to get restored.

Where the strength comes from.

This week has been crushing. Just crushing. I’ve been looking for something to settle the outrage. It’s the stuff needed by everyone who practices moral distress for a living. The things that get you by when 5 out of six patients in the ICU are bodies begging to be let die. When you feel helpless, without recourse, exhausted. When the news is just so bad.

Breathless diatribes to friends and family members do not work. Also, they are not appreciated.

Trolling twitter is an exercise in futility and will prevent you from sleeping at night. Not recommended.

So after alienating all people IRL and on the internet, I went to the books. My college roommate gave me a Maya Angelou book of poetry for my 20th birthday and I am forever grateful. (Although that night the only thing I was was debauched, later I was grateful. What a cool roommate). Angelou was given a diet of abuse and society’s garbage and still grew into a sterling woman, poet, author, activist. I mean a true gift to the human race. I could listen to her forever, but this excerpt from a Fresh Air interview where she talks about discovering the universality of poetry and recites a Shakespearean sonnet (spur of the moment, from memory) knocks. me. back.

*Listen to the entire Maya Angelou interview

This is what is doing it for me today.