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54 socieTy interview with Anita catlin “palliative care can be a midwife to the dying process” “This is Anita Catlin. We invited her here to speak but we do not believe anything she says.” This is how American researcher Anita Catlin was introduced in 1996 to an audience of doctors from a large perinatal unit in a major US hospital. On that occasion, Catlin, a doctor of maternal-infant nursing and specialist in perinatal ethics, had been invited to talk about end of life in newborn infants, a subject that was more or less taboo among health professionals in the field. “People did not want to talk about it. They did not believe there was any other way to treat a newborn, even a newborn who was dying.” Anita Catlin was in Portugal recently to give a course to doctoral students of bioethics at the Universidade Católica Portuguesa [Portuguese Catholic University], where she talked to us about her work. In the early 1990s, Catlin became interested in the rights of mothers and children when she observed that when pregnant mothers were treated, the focus was more on the fetus than on the pregnant mother. She tells the story of a Native American woman who developed gestational diabetes and was seen at the health care unit where she worked. The woman was advised to begin taking insulin, which she refused to do. Unable to convince her to take insulin, the doctors threatened to report her to the authorities for abuse of her future child. “No one bothered to ask the woman what insulin meant to her. Was she afraid of the injection? Did she know someone who died because of insulin? They were so focused on the fetus and on the needs of the fetus, that it seemed to me they did not think about the mother.” In addition to mothers’ and children’s rights, Catlin also began to study the ethics of neonatal palliative care. She was one of the pioneers in the field in her country. In fact, in the US in the By mónicA cArvALHo* mid-1990s, debates on neonatal palliative care were not exactly embraced by the medical community. “I had some doctors very angry because I was saying we must look at the context of the family. What will happen to this family and this child if we continue to use high technology – ventilator, artificial nutrition – if it does not change the child’s prognosis? If what we’re doing is not changing the condition of the child, then why are we doing it?” For Catlin, technology is typically called into play very extensively without giving due thought to the ethics of its use. She gives the example of artificial nutrition through feeding tubes. In the beginning, this t e c h n i q u e w a s designed for patients who were recovering from lesions caused by ingesting poison or those who had esophageal cancer. Currently it is being used in any patient who does not have an appetite. She goes on to explain: “In my country, many times you put in a feeding tube and you begin to feed the patient artificially – and you can keep the body alive for a very long time. But you do not change the underlying prognosis in any way. People in bioethics worry about these things. Just because we know how to do something, does that mean we should do it? Is the benefit greater than the burden?” deATH in HeALTH cAre Catlin points out that the difficulty in dealing with death in pediatric and neonatal units is largely due to the education and training that health care professionals receive, particularly in the case of physicians. She says that in the neonatal nursing textbooks used in nursing schools there is usually a chapter on end of life. However, the same cannot be said for medical textbooks, even though children often die in neonatal and pediatric intensive care units. ‘ There is nothing in the book to teach a physician how to withdraw care, how to withhold technology, or how to make a dignified end of life. not one word. ’ “If you open any book used to train physicians – and I know all these books, they are used in Portugal as well – the word ‘dying’ is not in the book. There is nothing in the book to teach a physician how to withdraw care, how to withhold technology, or how to make a dignified end of life. Not one word.” She goes on to say, however, that this is changing, in Portugal as well, where she believes significant changes are being made. An example of this is Hospital de São João in Oporto, which is in the process of Parallel no. 6 | FALL | WINTER 2011
the first of its kind in the country. Despite this important step, it is disturbing to see in Portugal that there are still so many cases of children living in the Azores, in the interior of the country, or in Angola who are transferred to central hospitals in the hope of a cure or an improvement in their status. Many of these children have a poor prognosis and end up dying far from their communities and sometimes far from their families as well. Catlin says: “I think if you do good palliative care, and if you begin offering hospice [care], maybe this won’t happen so much.” THinK Less ABouT euTHAnAsiA Although euthanasia is not allowed in the US, in the states of Oregon, Washington, DR creating a pediatric palliative care unit, socieTy and Montana assisted suicide – Physician Aid-in-Dying (PAD) – is possible. In assisted suicide, the doctor, at the patient’s request, prescribes medications that the patient can use to end his/her life. However, of those who ask their doctors to prescribe this medication, most do not actually take it. Therefore, Catlin concludes that assisted suicide appears to have more to do with having control over one’s own destiny, “control over how they would die.” Catlin believes that people think less about euthanasia or assisted suicide when they can treat the uncomfortable symptoms of death and have a good end of life. Her belief is based on the increased use of palliative care in the state of Oregon since assisted suicide became legal. A reaction, according to her. Anita catlin, who was in portugal to lecture on palliative care. According to the researcher, palliative care involves a massive team effort, where each health professional plays a role. For those who study or work in the area, providing palliative care relies on people coming together and working well together, so that everyone can feel good about their own work. “I once heard someone say: palliative care is like being a midwife. You know, the midwife and the team bring a person into life. There’s the midwife and the doctor, the social worker, the nutritionist, and the pharmacist – many people are involved in bringing a person into life. I think that palliative care can also be a midwife – to the dying process.”. * Psychologist and Journalist. Doctor of Communication and Culture. researcher at the Universidade Católica Portuguesa Institute of Bioethics. Parallel no. 6 | FALL | WINTER 2011 55
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