Brief comment: "Being in the ward" - Patients' perspectives on hospitalization

by Gideon Lasco, MD, MSc

“To be on this ward means I have to be ready to agree, always pretending I know nothing and that my body does not react to medications in ways that the doctor will interpret as my hidden resistance. Therefore, I may not even ask to change the medicines that are hurting me. (Mr Ndege, 54, multiple myeloma) in "Patients’ perspectives on hospitalisation: Experiences from a cancer ward in Kenya" by D. Mulemi

This quotation - actually from one of the cancer patients interviewed - captures what the author wishes to convey, which is the deprivation of agency and a passive role in the healing process that lead to disillusionment and despair. By demonstrating that the health care providers’ version of care actually leads to a form of hidden suffering that coexists with the suffering brought about by illness, Mulemi makes the point that dissonant expectations between doctors and patients can lead to poor outcomes, construed broadly to include decreased quality of life. Moreover, his insight that "patients’ acquiescence might not be consistent with the medical perspective of compliance” has implications for clinical practice, problematizing notions of compliance and consent even when on the surface it is “voluntary and informed”. 

In reading the text, I am somewhat reminded of Foucault’s The Birth of the Clinic in which the hospital was seen a site where medicine and disease blurs in the process of making each other visible. What Foucault lacks in his master narrative, however, is how such transformations of the clinic (and thus of ‘care’) is experienced by patients, and hospital anthropology affords us this view.

The context here is important: the hospital is for poor, charity patients who do not have financial leverage and healthcare choices are very limited. These structural constraints, as alluded to in the paper, can be explored further. Following Geest and Finkler’s contention that “the hospital is not an island but an important part of the mainland” (2004:1998), what social realities does the hospital in this particular setting reproduce? Or is there a relation of power between doctor and patient that is produced independently of their cultural and socio-economic divide -  a uniqueness of place that suspends social relations to some extent, as Taussig (1980) might suggest? I think these questions can be answered by further characterizing the patients in this study, not simply as “poor” but looking into their different backgrounds, as poverty is not a fixed category, but a spectrum of categories. Or perhaps studying other socio-economic classes in the same area. Have poor people, amidst the commonness of their predicament, become a “marginalized majority” (de Certeau, 1984)?

Amsterdam
December 2013

Remembering and forgetting: Reflections on Alzheimer's Disease

With my grandaunt Tarcila Lasco

by Gideon Lasco, MD

To grow old, many people think nowadays, is to become forgetful. We speak of "senior moments" as lapses of memory, and we are all too familiar with old people being ulyanin and having Alzheimer's disease. According to one study, almost 40 per cent of people over the age of 65 experience some form of memory loss.

Doctors make a distinction among various types of dementia, which may be confusing in real life as they often overlap. These include vascular dementia, the loss of memory and cognition that comes after a stroke. More commonly, there’s Alzheimer's Disease, a progressive degeneration of brain cells that runs its course through several years. Moreover, dementia is not to be confused with “age-associated memory impairment”, which is part of the normal aging process.

But in many cultures, to grow old is also to be full of experiences and memories. Among the Badjao, Italian anthropologist Bruno Bottignolo writes that the people have no concept of chronological age, and do not even know how old their children are. For the Badjao “what counts are the significant moments.” Similarly, when I traveled around the country to interview indigenous healers, who were mostly old men and women, some of them don’t know their real age, and would instead relate the chronology of their lives with events like World War II, the Martial Law, or which president was in office. As repositories of collective memories, old men and women were valued for their counsel and sought for their opinions.

We can still see traces of this in our own culture. The Tagalog term for old is luma, but for old persons it is matanda, a cognate of tanda, which means ‘to remember’. Indeed, we could take this to mean that our forebears marked age not by number of years, but by the number of memories.

***

I became mindful of these things when my grandaunt, Lola Tarcila, passed away at the age of 88. For more than a decade, she had suffered from Alzheimer's disease. As a medical student, and then as the only doctor in our family, I had followed the course of her illness, from the time that she began to lose track of our birthdays, to the time that she could no longer recognize herself in the mirror.

She never married throughout her life. Instead, she became a mother to everyone in our family, and supported the education of many of her nephews and nieces. And although she never wed, the sweetheart of her youth was always her refrain, even as all else has faded in her memory. “We would have been together...but I just did not want to elope with him,” she would always repeat, even to strangers, with an air of nostalgia.

The realization that something was wrong with her came to us when she began to misplace items. Keys would disappear, only to be found in the most obscure drawers. Then she began to forget birthdays and anniversaries. Soon, she lost track of the calendar, and every day she would ask whether it will be Sunday tomorrow. Slowly but steadily, her memory began to fade.

Then the day came when she could no longer recognize me, conflating me with my father, brother, or one of my uncles. But in rare moments of lucidity that gave me joy, she would tell others that one of her grandnephews would soon be a doctor. One day, we saw her talking with herself at the mirror, thinking that it was another lady in front of her. But even then, her graciousness never left, politely asking her own image whether she would like to come and have dinner with us.

Visitors came to see her - family and friends - but as the years passed, the visits became fewer and further apart, While everyone she knew kept their high regard for her, perhaps this was inevitable as she could no longer take part in conversations. It was as if the Tarcila they knew no longer existed. Looking back, I realise that the tragedy of Alzheimer’s disease is not just that you forget people, but that people forget about you.

***

On August 2013, Lola Tarcila died peacefully in her sleep, after 15 years of Alzheimer’s. I had only been 12 years old when she started losing her memory. Gone from us is is my dear grandaunt who cooked the best bulalo, prepared the best leche flan. Her industriousness and generosity have been life-changing for many of her loved ones. But, alas, the intervening years have blunted the impact of her loss. How could I forget the voice that lulled me to sleep when the world was yet bright and new? Yet, even as I race to remember those times, I knew that my efforts are bound to fail, for the details have slipped.

Could it be that Alzheimer's disease is a metaphor of the human condition? We go through life as parents and children, brothers and sisters, lovers and friends, and these bonds are initiated and perpetuated by physical connections, of joy and sorrow, of triumph and defeat, of love and hate, of constancy and change, of distance and intimacy. But even as we etch these things in our memories, and convince ourselves that there they will remain forever, they begin to fade at the moment of their inception. And when the time has come to recover them anew, we realize, sometimes in tears, sometimes with indifference, that very little has remained.

To hold on to these memories, and to never let them go: This then is humanity's only resort. It is not in the inevitability of forgetting, but in the struggle of remembering, that we are able to rise above the illness of corruptible memories that afflict all of us, some in dramatic fashion, others in far subtler ways. Just as Lola Tarcila, even in her amnesiac state, never forgot her sweetheart, though several decades have passed, so too will I try to never let go of the elders who have touched my life. To look at them as matanda: full of memories, and to fill ourselves with memories of them: this is what will allow us to cherish them in life and treasure them in death and beyond. Indeed, we should strive to carry them in our hearts until our own capacity for memory and life has gone.

When all remedies have failed, there is still remembrance.

Puerto Princesa
January 31, 2015