Sharing truths of terminal illness in rural Guatemala

The following two tabs change content below.
Jillian Moore
Jillian Moore is a student at Harvard Medical School. She has worked in rural Mexico and in indigenous communities in Guatemala with Wuqu' Kawoq | Maya Health Alliance. She is currently a Doris Duke International Clinical Research Fellow in Guatemala. Her interests include gender, inequality and marginality, palliative care, and mental health.

Over the last four years I have visited communities in rural Guatemala with Wuqu’ Kawoq | Maya Health Alliance, a civil society organization providing health care and other services in these places. The organization has also come to specialize in caring for those with complex chronic and terminal illnesses, and therefore the staff provides quite a bit of palliative and end-of-life care. Observing interactions between caregivers and patients, I took interest in how people communicate in these pivotal encounters. Two years ago, I spent the summer visiting patients with terminal illness and their families and discussing their life histories and illness experiences. Here I specifically discuss disclosure preferences, what patients prefer to understand about their illnesses and prognoses and why, through the stories of Naomi and Elsa.

16064589354_10738fb05e_o

Naomi was a single mother of seven diagnosed with late stage cervical cancer in her early forties. Once diagnosed, she moved back to her hometown to live with her mother and sister. Her adult daughter stayed home to care for younger siblings, and her sons took on multiple jobs to earn money for their household. Her brothers, who also lived nearby, helped economically when they could. Her mother, sister, and daughter each cared for Naomi when she felt ill and accompanied her to clinic and hospital visits. When asked whether a doctor should tell his patient she has a serious illness or that she may die from her illness, Naomi felt ambivalent:

Well, there was a woman with my same disease of cancer…A doctor in [the town] told her that she would soon die, that she would only live a month. The woman started to cry; she had children. And after a month, the woman died. She died after a month just like he said she would…I believe it is not good that he told her. [The physicians] frighten you, and then you just count your days until you die…but the other hand, if a doctor tells a patient she will die, then she can think about what to do for the children.

Naomi portrays the words and actions of the community surrounding a person having the power to shape her trajectory. The story she told resonates with beliefs of many others in this world that thoughts and language shape reality. Stemming from these beliefs, core moral principles may include hope, harmony, and interdependence. This perspective contrasts starkly with those of caregivers from Western countries working abroad, carrying with them practices engrained in the medical cultures of their homelands. In the United States, almost all physicians share diagnoses and prognoses with their patients, while in other countries disclosure rates may be as low as 17%. Medical practice in the United States is highly influenced by a professionalized field of bioethics, rooted in American individualism and centered on principles like patient autonomy, informed consent, and confidentiality. Indeed, in the United States, disclosure is a moral duty, for patients have the right to be informed to make rational decisions over the handling of their own bodies and lives.

While Naomi felt unsure about whether patients and their caregivers should discuss a poor prognosis, her family believed that it would be harmful to do so. However, a physician had in fact told Naomi about her poor prognosis. Nonetheless, Naomi and her family rarely spoke about the severity of her illness. Her sister Rosa explained why:

A doctor should never say such things to the patient. If the illness is serious, if her last day nears, if she only has a year left, never tell the patient. Only tell her family…her health is very delicate, and if she suddenly feels sad, she may be too sad to eat, and she will cry. If she is a mother with children, it could be even worse. She may just stay in bed and get sicker. For this reason, we do not tell her anything.

Through omission, Rosa intended to protect Naomi. Were Naomi to contemplate her illness, Rosa imagined it might cause Naomi to more swiftly deteriorate. To preserve her strength and keep her spirits high, the family did not speak of the severity of her illness or of death. As Gordon writes of nondisclosure of cancer diagnoses in Italy:

… the preference for indirect or obscure communication about the approach of the end of life has to do with the overall cultural appreciation of what it means to be alive. In this view, for a person to enjoy life, one must go on as before…the diagnosis of cancer takes all that and takes away the enjoyment of the present. It condemns the person to a period of being among the dead while still alive.

A family can preserve a place in the world for their loved one by preserving her social roles as long as possible. Through the gesture of omission, Rosa and her family sought to allow Naomi to continue on as before her illness, in essence, to keep her among the living, thereby delaying her social death, that cessation of her active involvement in the lives of others.

2155108873_ac4e3462c1_o

While Naomi was surrounded by kin, Elsa lived in a fragmented family. Elsa was a middle-aged woman diagnosed with diabetes in her twenties. A few years before I met her, she entered renal failure and, with help from Wuqu Kawoq, did peritoneal dialysis four times a day in the home she shared with her seven-year-old daughter and her father. Her sister, who also had diabetes, lived with her own family down the street where she spent most of her time raising her young children; their brother had moved to New Jersey where he worked at a Walmart to earn money he sent back to his wife. Elsa mostly cared for herself: her father spent his days out working, and when he was home he did not directly care for his daughter. As a result, Elsa had neither a primary caregiver nor anyone to regularly support her when making medical decisions. As Elsa explained,

It is not that our families do not want to care for us, rather our families are not able to care for us. These illnesses are expensive, and especially in Guatemala families do not have the capacity to take care of the sick.

Economic pressures had fragmented her family: her father left every day to work, one brother even migrated across the continent so his wife and children could get by. Without a local support system, Elsa alone orchestrated her care: the blood glucose measurements, insulin injections, carbohydrate counts, and dialysis. On top of all this, she took care of her young daughter.

When asked if a physician should reveal a poor prognosis to a patient, Naomi emphatically responded that physicians must reveal all that they can, “If the doctor does not tell the patient, then she does not have time to say goodbye to her family. If death is a surprise, she will not have a chance to do anything beforehand.” For Elsa, it was important to prepare for death, which for her would involve finding someone to care for her daughter. Indeed, Naomi had also shared this worry about what would happen to her children in the future and acknowledged the benefit of being able to plan. However, while Naomi and Rosa avoided conversations about dying, Elsa anticipated death, “It is like when a woman is pregnant, and the doctor tells her if she has a normal pregnancy she will give birth on this date, but maybe fifteen days before or after. You do not know exactly when… it is the same with death. You cannot avoid it; it is impossible. But like the woman with her baby and all of her pain, one has to compose herself.” Her family fragmented by economic demands, Elsa was responsible for her own medical care and the care of her daughter. She had no choice to think of the future and to “compose herself” spiritually, emotionally, and by slowly taking herself apart and undoing those essential parts of her existence. She in effect would hasten social death to properly delineate what would happen once she died.

Elsa and Naomi were both middle-aged single mothers living in rural Guatemala; despite these similarities, they led their own lives and held different beliefs about whether someone should be informed of her foretold death. As caregivers, especially when working in unfamiliar places, we wonder in which instances it is appropriate to “share the truth” with a patient. But perhaps we do not “share” truths simply through revealing them. Rather, we literally “share” truths in that we create these truths through ongoing iterative processes in which patients also engage. The truth of an illness includes both objective clinical knowledge and the subjective experience of the individual, and as caregivers, we respond to what the patient contributes. What does she experience, and what is her understanding of her illness? What are her hopes and her worries? What is her role in her family and community? Responding to what she shares, we choose how to speak a clinical reality into truth, recognizing that the truth created in this encounter can alter her subjective experience of the illness.

These truths are also shared in the sense that they are felt by all the people who surround the patient. Each patient is embedded in a moral web of responsibility and care. How the clinical realities of her illness are spoken into truth, and in turn how her illness is understood, affect her relationships and interactions with others and transform her social world. For those like Elsa living in fragmented families or shouldering many responsibilities, knowing a poor prognosis may mean slowly taking oneself apart, relinquishing those responsibilities and removing themselves from their social worlds, in a sense initiating their social deaths. For others like Naomi with strong families and social supports, their families may choose to share a truth that would allow them to hold on to their loved one a bit longer, to keep her in the world of the living.

All names are pseudonyms.