Caregiving: Turning the Light On…

Carol Ann Farkas, Professor of Medical Humanities, MCPHS University, Boston USA

 Maria Giulia Marini, Director of Innovation for Health Care Area, Fondazione ISTUD, Milano, Italy

 

Around the world, 70% of women are engaged in caregiving. To give care is an attitude, translating into action, and practiced everywhere by daughters, partners, wives, mothers, sister, aunties, nannies, and paid providers.

 

During our recent visit to Harvard, prof. Arthur Kleinman, psychiatrist and anthropologist, described caregiving as “both an attitude – a tension -inspired by culture and civilization, and a natural instinct. It is a biosocial phenomenon. Culture intensifies or dampens this human development to care. We learn to care. However, there is a gender component in many societies: boys are socialized to be careless, women to be careful. This is not only a patriarchal heritage, but a matriarchal legacy, to leave men out from the experience of caregiving—something that was considered power for women, not for men.”

 

Of course, while caregiving might be powerful, it isn’t always power. Not all care is provided voluntarily—people in fragile and vulnerable situations might provide care in response to the domination and control of others. We must also consider the “burden” of providing care: caregivers, the majority of women, are many times left alone to take care of family members or friends who suffer from very chronic conditions.  In one out of two cases, women who become solely responsible for the care of another have to change or give up their own work [1].

Therefore, the following question we asked ourselves is “How did we get here? Do women give care from a position of choice and power? Were the men exiled from caregiving, or did they force women to become self-devoted, dedicated, and caregiving?”

 

Greek and Latin mythology offers the legends of ancient societies in Greece, particularly Crete, which once venerated the Goddess of the Snakes: a symbol of matriarchal power. Women were worshipped for their reproductive power, and they were appointed to be the inventors of agriculture in a balanced, peaceful society. Men, according to history and myths, came to massacre such worship and its traditions, displacing women’s power. In mythology, we have clear examples of male brutality: the beautiful girl Europa was stolen from her land by Zeus, in the form of a raging bull; Medusa was a wonderful Amazon transformed into a Monster by Athena—the  rational deity—and eventually beheaded by Perseus; Persephone, daughter of Demetra, the Goddess of the Harvest, was raped by Hades. These facts represent the turning points from a matriarchal system to a patriarchal one, which reaches its peak with the concept of the “Pater familiae” in Latin society. No power to women, except to take care of children, the elderly, and the sick. Female power was represented by Esthia, or Vesta, the Goddess of the house, of the hearth. Women were meant to stay home from that point, with few exceptions. The results: the attitudes, behavior, and burdens of caregiving were relegated to women—which also forced women to build strong caregiving network in their communities.

 

Women began to advocate for their emancipation relatively recently when measured against the whole span of Western history.  Now, however, both western and eastern societies have deeply changed. Women are more free, leaving their houses, achieving self-realization and self-sufficiency through education and work And yet, the issue that many of the women- have now to cope with,  is the balance between caregiving in homes and families and responsibilities and ambitions in their workplace. Prof.  Kleinman asks a vital question: “But why have men been excluded? I don’t see the advantages for a society to let only women practice the skill and art of caregiving, therefore creating a singular domain, which is nevertheless not valued in the long term by the community. Caregiving has to be a shared domain in which all genders should take care of others,  from children to the elderly and the frail. My sense is that we are losing care in both the family and in the care-giving professions. Indeed, caregiving is in danger of becoming anaemic throughout the professions.”

As a matter of fact, while women may have once had to guard what power they had as caregivers when they were otherwise powerless in society, nowadays women and men must share this power/burden/mission. It is anachronistic, in this moment of rapid social change for women, still to bear and defend this absolute power.

However, sharing the power of caregiving requires profound shifts in every facet of society, with the health profession as one obvious, and crucial starting point. For example, recent studies find that women doctors are not only perceived as, but objectively are, better carers than men. Therefore, they are able to bring into the profession a legacy of caregiving that has been passed down, if not enforced, for centuries. Patient gender disparities were analyzed in survival rates following acute myocardial infarctions (i.e., heart attacks) based on the gender of the treating physician. Using a census of heart attack patients admitted to Florida hospitals between 1991 and 2010, It was found higher mortality among female patients who are treated by male physicians. Male patients and female patients experience similar outcomes when treated by female physicians, suggesting that unique challenges arise when male physicians treat female patients. It was found also that male physicians with more exposure to female patients and female physicians have more success treating female patients.”[2].

Here we are talking not only of a light outcome, patient’s satisfaction, but of mortality rates. As these and other studies have found,  female doctors simply spent more time listening to patients than their male colleagues did. Listening is the first act of caregiving.

Nevertheless, caring must be shared, and to accomplish this goal, we must go beyond expectations of traditional gender roles, to actively rethink the educational patterns of all the providers of care: physicians, nurses, and all members of the health care team.

Prof. Kleinman has long been forceful in his critique of “troubling trends” in the system of health care education:“There is something toxic in the way students are taught medicine these days, something dehumanising, which is  dangerous not only for patients, but also for the future doctors themselves. There is something in the “hidden curriculum” of medical school which undermines students’ ability to empathize with patients, to elicit information from patients that could have a biosocial benefit as well as a relational one. Too often, students learn that listening and talking to patients doesn’t matter as much as intervention, prescribing, treating. It is complicated to take patients’ stories, to engage with them.  However without the  adequate skill, without the development of empathy, students tend to burn out by the 4th year of medical school. In addition, the whole system of health care is too frantic, too hierarchical, with too much bullying, too much pressure, with not enough time to slow down, relax, and reflect – all contributing to provider unhappiness and an inability to provide nourishing care. The reinforcement of critical reflection is an act required to be a good carer: there must be time and space for providers to listen to and think about what their patients are telling them.”

 

Bowman’s seminal study from 2009, “The Devil is in the Third Year, “focuses on the erosions of empathy among future physicians, which apparently begin from the third year of medical school. Bowman used the Jefferson Scale of Empathy, in which empathy is defined as the capability to understand patient’s experiences, concerns and perspective. His findings: “the escalation of cynicism and atrophy of idealism has been longer recognized as part of students’ socialization in medical school and their adaptation to a professional role…This downward trend has also been observed in the ethical erosion of medical students during their clinical trainingit is a socialized amnesia.”

 

This is where applied narrative medicine can help us understand empathy, as a crucial step toward undoing this “socialized amnesia,” and fostering caregiving as a practice shared amongst caregivers regardless of professional or gender roles. For example, the ISTUD group in Italy has collected 123 narratives of patients with multiple sclerosis: the main simple message was, “Amor Vincit Omnia”: love conquers all. In their own words, patients put relationships and bonds in first place as the most important coping factor to their illness experience. Tellingly, however,  some physicians took issue with such “romantic” findings, saying that patients needed realistic information about the challenges they would have to face living with MS. These neurologists were not happy to see such high levels of emotional energy in the narratives of these patients. We speculate that this might be a system of self-defence for physicians, who have not been explicitly taught how to deal with the vulnerability and disability of their patients, especially younger ones. Better to hide beyond technical jargon, to cover the impotence of providing effective healing for this condition. And yet, empathy is eroded by the distance of this “clinical gaze,” As prof. Rita Charon has argued, “A medicine practised without a genuine and obligating awareness of what patients go through may fulfil its technical goals, but it is an empty medicine, or, at best, half a medicine.”  And more than this, the technical practice covers the emotional one, the fear of impotence, the sentiment of inadequacy toward the patient, the anger of not having in their hands the “Elixir of long life.”

 

What to do, pragmatically, to foster the development of empathy? Prof. Kleinman advocates for requiring future health care providers to take on the most intimate, and humbling acts of caregiving in those periods before and after they have been immersed – and empathetically depleted – by their formal education: “There are too many trials and exams in the rest of the curriculum for students to take on such caregiving experience. But there is a very clever and interesting program at Leiden in The Netherlands, in which future students of medical school live during the summer time in the patients’ homes.  They perform the act of caregiving: to comfort, reassure, wash, feed, clean, dress, and all other actions requested. It is a very meaningful educational period; students are not busy yet with all their exams, and it works. The other period in which it is desired to study medical humanities could be the last year of the medical path.”

 

We think that such programs could be expanded to the community level as early as high school, integrating caregiving into whatever studies or work they wish to undertake. Many of our students at MCPHS University in Boston

serve as inspiring role models for this kind of caregiving: our students become ambulance technicians while still in high school; they work in day-cares and nursing homes; they volunteer as scribes, translators, and patient advocates in emergency rooms, rape crisis centres, and homeless shelters; they participate in medical service trips to disadvantaged regions in the US and Caribbean. Some of this service is mandated as part of their program of study; the majority of it is motivated by the students themselves, who see the caregiving of their families and communities as seamlessly interconnected. We can learn from their example: caregiving should not be only in the hands of health care providers and institutions, but in the hands of humankind, a social caregiving run by boys and girls, women and men. And the female paradigm of caregiving is moving faster towards both genders, including also men, in these younger generations and those still to come.

 

 

 

Bibliografia

  1. published data, Fondazione ISTUD
  2. “Patient–physician gender concordance and increased mortality among female heart attack patients,” Brad N. Greenwood, Seth Carnahan, and Laura Huang, PNAS, 2018
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