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From Chronic to Critical: A Latino Family Confronts End-of-Life DecisionsBy Karen Peterson-Iyer
Gabriela Rivera is an 80-year-old Puerto Rican immigrant, who lives alone in her rent-controlled apartment in New York City. She has lived in the United States for almost 40 years and speaks some English, albeit somewhat hesitantly. Her primary language is Spanish. Although she is now retired, for years Gabriela worked in a factory where she was exposed to a variety of industrial chemicals now considered toxic. Gabriela's husband died four years ago of a massive heart attack. She has six adult children, three of whom now live out of state.
Gabriela is a devoted mother, calling her children as often as she can afford and even sending them homemade sweets. She raised her children through their teenage years in the same apartment in which she lives today. She is loath to leave it, although she now pays the rent only with great difficulty and substantial financial help from her children.
Gabriela has long suffered from high blood pressure, which she controls with medication. She also has type-2 diabetes. When she was originally diagnosed with diabetes, she met once with a nurse who advised her on diet, exercise, and weight control, but Gabriela has found it difficult to adapt her traditional tastes in food and her lifestyle to the recommendations the nurse offered. Subsequently, Gabriela's doctor prescribed medication to help keep her diabetes under control. She tries to take her medication whenever she can remember and when she can afford it. Recently, tests have revealed that her kidney function has been declining.
Gabriela's youngest son, Marcos, 49, lives near Gabriela. He speaks fluent Spanish and good (though heavily accented) English. He checks on his mother as frequently as he can. Marcos is a contract construction worker, married with three teenage children. His daughter, Cecilia, 15, spends a great deal of her time at her grandmother Gabriela's apartment, doing homework and helping out with daily chores.
Marcos was also recently diagnosed with diabetes. He learned of his disease at a low-income medical clinic from a doctor who advised him to make major lifestyle changes in order to prevent the worsening of his disease. Marcos is a moderate-to-heavy drinker, but he refuses to cut back on his drinking, since he "can handle it," and it is an important part of his social life. He also has a great fear of needles, and he recoils at the idea of having regular blood tests. He reasons that he will just learn to live with his symptoms, which are still relatively mild.
Lately, Gabriela has had an increasingly persistent cough and often suffers from headaches, shortness of breath, and generally feeling ill. She has been ignoring these symptoms and writing them off in part to her persistent insomnia.
One afternoon, on her way home from work, Marcos' wife Maria receives a panicked phone call from their daughter, who has shown up after school at Gabriela's apartment only to find her grandmother feeling acutely dizzy and anxious, and having severe difficulty breathing. Maria hangs up and calls 911, calls her husband Marcos, and then races to meet the ambulance at the hospital.
Gabriela's initial workup reveals a diagnosis of advanced Chronic Obstructive Pulmonary Disease (COPD), a lung condition, and bilateral pneumonia. In addition, blood tests show that her diabetes is out of control and that her kidneys are functioning at less than normal capacity. Once Gabriela has been stabilized with oxygen, the attending emergency department physician, Dr. Michael Johnson, speaks (in English) with Marcos, Maria, and Cecilia. Addressing all three of them equally, he informs them that, in addition to the advanced COPD and pneumonia, Gabriela also apparently is suffering from kidney failure, a complication of her diabetes. He would like to admit her to the hospital for observation and treatment of her pneumonia, and to call a nephrology consult regarding her declining kidney function. They agree and Gabriela is admitted to the ICU, where she is initiated on antibiotics for her pneumonia, and bronchodilators, corticosteroids, and supplementary oxygen for her breathing. Upon admission to the ICU, Gabriela's attending physician there, Dr. Rachel Parker, also speaking English, attempts to discuss with Gabriela the option of a DNR (Do Not Resuscitate) order, but the doctor soon assesses that Gabriela does not have capacity at this time to make such a decision. Dr. Parker then approaches Marcos on the matter, explaining that in patients such as Gabriela, the chance that resuscitation will restore a patient to her previous quality of life is vanishingly small. Marcos, however, vehemently forbids the DNR and insists that it not be mentioned again, especially not in front of Gabriela.
The following morning, the nephrologist consults with Dr. Parker and subsequently the two of them meet with Marcos and Maria. The nephrologist explains the extent of Gabriela's disease and that she is not a good candidate for a kidney transplant, given her other medical problems. Further, at Gabriela's age, long-term dialysis would put a tremendous strain on her body and her quality of life. After allowing this information to sink in, Dr. Parker explains that, even if the pneumonia can be brought under control, Gabriela will need a high level of ongoing care; she will no longer be able to live independently, and it is unlikely that she will be able to manage her oxygen therapy on her own. In sum, Dr. Parker says, the decline in kidney function, along with the COPD, means that Gabriela's long-term situation does not look good.
Dr. Parker then gently raises the possibility of foregoing dialysis, accepting Gabriela's inevitable gradual decline, and instead providing hospice care at home. She attempts to convey to Maria and Marcos that hospice can provide excellent care and support of the patient, as well as a great measure of relief to families as patients approach the end of their lives. Hospice also can arrange for and manage Gabriela's necessary medications and other medical needs. During the conversation, Maria simply looks at the floor. Marcus, however, abruptly and angrily bursts out that his mother is not dying and that God will certainly protect such a saintly woman through this time of trial. He also insists that they are perfectly able to care for her needs as a family and that the doctors have no right to talk about matters such as "hospice" when they should be concerned only with his mother's recovery. He insists that dialysis be initiated immediately and that a kidney transplant be pursued.
Karen Peterson-Iyer is a program specialist in health care ethics at the Markkula Center for Applied Ethics.
The cases here are fictional composites made up from the details of many different real situations.