Lack of ethics committee overloaded health professionals in the pandemic

The infectious disease specialist Eduarda Ribeiro Prestes, 30, faced the most harrowing decisions of her professional life during the pandemic.

It was May 2020 and, with the lack of ICU beds for Covid-19 patients that plagued Santarém, in the interior of Pará, Eduarda felt the responsibility of deciding the future of patients to weigh on her and her colleagues.

Eduarda was one of the few specialists in teams composed mostly of newly graduated doctors. He worked in a field hospital and in the Emergency Care Unit, both overcrowded. In the first, two fans served the 50 available beds.

The scarcity of beds and equipment imposed difficult choices: on a Sunday, you had to decide who would occupy the only available ICU bed: the grandmother of a friend or a woman who was seven months pregnant with her first child? The grandmother was 85 years old and in critical condition; the mother-to-be was 21 and another being on the way. Whoever seemed to have more chances to survive won.

Mother and son died that same day, the grandmother days later. “I had to make a lot of decisions alone, and the feeling was that if any one went wrong, it would be our fault”, recalls the doctor. There, as in most hospitals in the country, there was no hospital ethics committee to anchor health professionals in life and death decisions.

Not for lack of recommendation. The committees “providing advice on ethical problems in clinical situations” are recommended in the Universal Declaration of Bioethics and Human Rights, adopted by UNESCO in 2005.

In Brazil, the CFM (Federal Council of Medicine) has advised the creation since 2015. In the pandemic, the Brazilian Association of Public Health (Abrasco) and the Brazilian Society of Bioethics (SBB) reinforced the need.

Data are lacking in more than 6,000 Brazilian hospitals, but it is known that they are scarce and are practically restricted to large institutions. There are no regulations on format and performance.

“It is not a Brazilian culture, Brazil has never been much concerned with this issue of ethics in hospital practice,” says Elda Bussinger, president of SBB.

In the USA, according to a study by the Bahia School of Medicine and Public Health, the committees are present in 90% of hospitals. The emergence dates back to the 1960s, when the scarcity of hemodialysis equipment stimulated debates about which patients with kidney disease should receive treatment, reports José Roberto Goldim, professor of bioethics at UFRGS and one of the founders of the bioethics committee at Hospital de Clínicas of Porto Alegre.

New ethical dilemmas stirred the public debate and consolidated the committees in the country. The best known was that of Karen Ann Quinlan, who entered a vegetative state after a combination of crash dieting and drinking alcohol and a sedative. The case ended up in the courts: his parents defended the disconnection of the respirator; her doctors claimed that the patient did not meet the criteria for brain death that would justify the measure.

The New Jersey court delegated the decision to the hospital’s ethics committee, which had to be created to decide the patient’s future. Karen was removed from artificial respiration, but survived and spent another nine years in a coma, until she died of respiratory failure.

In Brazil, the Porto Alegre HC was a pioneer in its creation, with a committee active since 1993. At the height of the health crisis, it held weekly meetings.

“The ethical dilemmas within hospitals were exacerbated by the lack of resources and the unprecedented nature of the situation. We were not trained to make decisions in a pandemic, and we saw chronic suffering for professionals on the front lines”, says Ricardo Kuchenbecker, physician and researcher at HCPA .

Goldim, who is also the coordinator of the hospital’s Bioethics Assistance Service, says the group was called in more than 700 times in 2020. The most difficult issues involved the distribution of beds and the use of very scarce resources such as the ECMO (Extra Corporeal Oxygenation Membrane) ). The group also jointly decided that age could not be the exclusive criterion for decisions about beds.

Decisions taken by the committees are based on the theoretical framework of bioethics and other specialties present. They aim to support professionals in decision-making and so that they can make choices based on more objective criteria, especially in stressful situations.

“ICU professionals, for example, have had an exposure to a number of deaths that many combatants in war do not have,” says Goldim.

In the absence of committees, the Brazilian Association of Intensive Care Medicine, the Brazilian Association of Emergency Medicine, the Brazilian Society of Geriatrics and Gerontology and the National Academy of Palliative Care published, in May 2020, a protocol to try to help decision-making in resource-scarce scenarios during the pandemic.

The document presents as one of the justifications to remove the weight of these decisions from health professionals: “Making decisions of great moral weight in a subjective way and without institutional support or formal recommendations can be emotionally debilitating”, says the text.

Two bills that could regulate the creation of the bodies have been on hold since 2012: PL 3497/2004, which proposes the creation of the National Bioethics Commission, and PL 6032/2005, on the National Bioethics Council. For specialists, these entities could encourage the creation and guide the performance of local committees across the country.

According to Bussinger, one of the proposals of the current SBB management is to survey the existence of current committees and mobilize professionals and society to approve the bill that would create the National Council. “We now know more than ever the need for bioethics committees.”

Ethics committees that can work in the health area

Research Ethics Committees (CEP)

With deliberative power, they are linked to the National Research Ethics Commission (Conep) and can authorize or veto a research

Medical Ethics Committees and Nursing Ethics Committees

Linked to CRMs and Corens, they are formed by doctors and nursing professionals (including midwives, technicians and nursing assistants), respectively. They deal with ethics in professional practice in health institutions and are mandatory in institutions with more than 30 doctors and 50 nursing professionals

Bioethics Committees

Multiprofessional in nature, they have a consultative role on ethical dilemmas that arise in health care, relationships with patients and families, and resource allocation. They do not have specific regulations nor are they mandatory, but the CFM has recommended them since 2015. The creation depends on the hospitals’ own initiative and experts say they are rare