Patient Engagement

Anything but Routine

A few months ago my friend “Sophia” told me she was preparing to have a hysterectomy. The surgery was medically necessary, and she had found a gynecologist of good repute whom she trusted, so she was resolved to go through with it. But at an emotional and spiritual level she found herself recoiling with trepidation and ambivalence. Walking with Sophia through the process of preparing for her surgery and experiencing these anticipatory feelings, was a reminder for me as a healthcare professional that everything we do to the body, we do to that person’s whole self. Some things that we treat as purely technical procedures (like cutting out a “bad” organ) can have deep and layered meanings for our patients. I’ve been wondering,  in this era of the ascendancy of “the patient experience,” what would it mean to engage patients in conversations about the psychological, social or symbolic meanings of the procedures or treatments we propose?

I could relate to Sophia’s ambivalence as I’d had a hysterectomy 4 years earlier. When I was in the process of making my decision about surgery, most physicians I met were puzzled by my ambivalence about losing my uterus. It was clear I was no longer able to have children, so why fight to hang on to this superfluous organ that was causing me so much suffering? There was no space to articulate that my womb was more to me than a baby-maker, and that the decision to have a hysterectomy had profound emotional, existential and spiritual implications.

In our conversations about her impending surgery, Sophia and I talked about the complex spiritual/ cultural discourses surrounding the uterus. The notion of “womb” does a lot of symbolic labor as it is a potent metaphor in our society:  Womb as …. Generative centre (forming, creating, harbouring)…Giver of life (growing, nurturing, birthing)…Sexual core (yearning, merging, quaking)…Marker of cyclical/lunar time (ripening, diminishing, renewing)…Connective axis (to past and future, to ancestors and to progeny). And yet, women have no place to explore the layered meanings of a hysterectomy, either in mainstream religious communities or in the world of medicine. Sophia and I were wrestling with questions like: What does it mean to be a woman without a womb?  How does one grieve the loss of one’s potential to bear children (totally and finally),  whether or not one actually intended to have more children? How does one embrace this new stage of life? How does one reclaim a body, and reshape an identity, after a constitutive part of it is taken away?

Sophia decided she wanted to wrestle with these questions in a broader community of women, so she and I co-created a ceremony she called a “Hyster Journey Gathering.” Its purpose was to bring together wise, thoughtful women in her life, to share our stories of womb, of weathering life-transitions, of self-transformation, of healing after loss. The women ranged in age from early 30s to late 60s, and had a variety of reproductive histories; some had biological children, some step children, some wished for children and some had chosen to remain childless. The group included artists, crafters, leaders, care-givers, community-builders. In this gathering we pushed back against conventional cultural discourses that tend to define women by their relationships to men and children. Instead, we celebrated the multi-faceted meanings of womb, and the diversity of women’s identities, women’s work and women’s creative potential across the lifespan. In this circle, stories were shared,  poetry read, songs sung, canvases painted, and blessings were spoken both for Sophia’s health and well-being, and for all of us blazing our unique trails as women trying to make our way in the world.  At the end, each placed a symbolic gift for Sophia in a basket, along with a word  that expressed something of our hopes for her as she transitioned into this new phase of her life: threshold, clarity, awaken, embraced, trust, breaking open, laughter, beauty, serenity.

When I met with Sophia two days before her surgery she said she felt ready, calm, hopeful and at peace with losing her uterus, but most importantly, she felt companioned; she no longer had to wrestle with her questions alone. The healing process was already underway, even before the first cut! Her surgery went very smoothly, her surgical team performed brilliantly, and she is recovering well, with her basket of words and gifts close at hand.

But when I saw her in the recovery room after her surgery she told me a story that has left me cold: “In the pre-op waiting room was another woman waiting for the same surgery. She was sobbing quietly, hiding her face behind her hands. I felt so sad for her, grieving that way, alone. I know that could have been me. I wish there was a way to tell the world of medicine, the world in general, that for many women, this is anything but a routine procedure.”

I’m not saying that every woman is or should be like Sophia, or that all patients have such deep attachments to their body parts. The point is that we rarely even ask the question.  While we can’t provide psychological counselling or ceremonies for all of our patients, what would it mean for us to make space for complexity and whole person care even when counselling patients about interventions we consider “routine”.  Could we ask: “What does this surgery mean to you? What does this part of the body signify to you? What are you most afraid of? What emotions arise as you contemplate this intervention?”  Such questions could give us deeper insight into the inner world of the patient, and enable us to provide more compassionate care. Such questions could help us to prevent the fragmentation of self that can happen in the process of medical treatment, and instead promote integration and healing that goes beyond mere biological remedy.

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