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Behavioral Sciences 2017, 7(2), 19; doi:10.3390/bs7020019
It had been nearly a month since I had seen her. When she opened the front door, I felt sure that she was dying. Sheila had moved into a house at the end of my street with her 24-year old daughter, Cass, and her daughter’s two young children, aged 1 and 8. The 8 year old was my daughter’s age and they had become fast friends and playmates. Sheila had raised her grandchildren while her daughter came and went as a very young single parent. Their arrival to the neighborhood had happened six months before, and upon my first meeting with Sheila, she shared about her ovarian cancer and how this had precipitated her move to our neighborhood—to be near another daughter who also lived a few houses away. In her seventh year with the disease, and still receiving treatment, it seemed clear that she had advanced terminal cancer. She mentioned things that told the story of her disease status: the recent discovery of a ‘new’ breast cancer, the language of hope confused by descriptions of ongoing aggressive treatments, and the notion of cure being mentioned as a possibility with her new doctors. Though I tried to share my thoughts about palliative care, this was never a topic we found a way to engage.
As I stood at her front door, the day I thought she looked like she was dying, she looked very thin. But her belly was enormous. Her eyes had a far off look and she described having bloating from diverticulitis, and that she was going to a GI doctor the next week to get it ’taken care of’’. I knew she was full of cancer and dying; I felt pretty sure that she might know this; and I was positive that no one in her world was talking with her about it.
1. Palliative Care and Mutual Pretense
- Americans are death-avoidant; thus we often die in hospitals, tethered to invasive medical machinery, and without benefit of having acknowledged death’s imminence and life’s remaining opportunities.
- As a result, we frequently live the end of our lives without the comfort of having addressed our emotional, psychic, spiritual, and existential pain—and without our family’s solace. Family members and patient alike are denied the relational closeness that living fully in the knowledge of an illness can bring.
- As patients and family members—we collude with our care providers to live in aggressive treatments as though we actually can avoid death, that our providers can solve the medical Riddle  of our illness. All parties to life-threatening or life-ending illness collaborate to produce a script boosted by the talk of treatment: we subscribe to Frank’s (1995) “restitution narrative” in that we believe that life, with appropriate (curative) medical treatment, can return to normal—to what it was before the anomaly of illness intervened, no matter the physical and emotional costs incurred .
- What Glaser & Straus describe is the ritual drama of mutual pretense, and it is enacted to manifest consensus that we are not dying . It is an agreement between healthcare providers and patient/family, rarely spoken yet intricately coordinated, that all will behave as if advancing disease and loss of what was—is not an option .
- The sender-based patient/physician model rather than the preferred collaborative model.
- The lack of patient-centered and family-centered care, such that the Voice of Medicine overtakes the patient’s Voice of the Lifeworld .
- The limited provider training in communicating with serious and terminal patients and their families.
- The ignorance about palliative care and hospice among providers, patients, family, community, and healthcare systems.
- The unavailability of palliative care in most U.S. hospitals.
- The belief by both medical caregivers and patients/families that hope inherently is cancelled if sustained and worsening illness is acknowledged.
2. The Family Caregiver and Palliative Care Growth
Emma was Shelia’s granddaughter, and my daughter’s playmate. Emma brought word that her MiMi (Sheila) had been inpatient since the day after I saw her at the front door. Her days at the hospital stretched on, one into the next. The moment she went inpatient, Sheila—mother, grandmother, and family bank—ceased being the primary parent for a one, eight, and twenty four year old. Her daughter, Cass, was in free-fall to accommodate both little children. She had relied almost exclusively on Shelia to care for her children while she worked as a server at a nearby restaurant. Without Shelia, Cass missed work and did not take her 3rd grader to school. Her parenting partner was no longer there. Shelia’s other daughter at the end of the street was less involved in her mom’s illness, and had two children of her own. Between these two daughters, neither of them visited their mom during her hospital stay. Emma began staying with us. She talked about the day her MiMi would get better, and come home. Now the family started to hemorrhage significantly, financially and emotionally. The house of cards had fallen.
3. Palliative Care Communication Training
4. Health Literacy and Its Role in Quality Care
For Shelia, the closest thing to a family caregiver was Cass—her daughter, with little children, few skills to survive, and now a sudden need to provide for all of them. The impact of her mom’s imminent dying accompanied by the silence around that reality created the perfect storm for her financial and emotional crash. Shelia remained in the hospital, and 8-year old Emma was lost and confused without her. Her life-long caregiver and bedmate had vanished. I stopped Cass in my yard as she dropped off Emma, and told her I thought Sheila was dying in the hospital.
5. From Mutual Pretense (Empathy) to a Sustained Gaze (Compassion)
Cass and I were in the driveway. A moment passed after I told her I thought her mom was dying. She leaned in and we hugged. She shuddered and whispered “I know.”
Conflicts of Interest
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