In August 2015, Regina Szylit Bousso, a professor at the Nursing School of the University of São Paulo (USP), returned from a six-month research period at a children’s hospital associated with George Washington University in the United States, ready to motivate doctors, nurses and other health care professionals to speak more often, more confidently and more naturally about death. “We deal with this possibility [of the patient’s death] all the time, but health care professionals still speak little about the end of life among themselves and with the families,” notes Bousso, who is now at the forefront of courses and interviews with hospital teams to reexamine how to deal with this topic.
Having worked since 1985 in intensive therapy units, where the risk of patient death is always high, she has seen that hospital teams generally continue to be withdrawn and reluctant to express their opinions. She believes that this can lead to incorrect decisions about the best treatment or care to offer a patient at the end of his or her life. This precarious communication also leads to unforgettable memories for those who lose family members in hospitals. In one of the studies conducted by the Interdisciplinary Center for Research on Loss and Bereavement (NIPPEL) of the USP Nursing School, which she coordinates, Maiara Rodrigues dos Santos interviewed women from São José dos Campos, in São Paulo state, whose children had died in hospitals. Ten years later, these women remembered with either gratitude or resentment the details of how they were treated and the names of the doctors and nurses they felt had treated them well or poorly.
In response to this situation, Bousso coordinated an extracurricular course for some 40 nurses, psychologists and occupational therapists interested in being better prepared to treat the ill and their families. In the first class, on February 2, 2016 one of her first questions to the participants was: “Have you ever been beside someone who is dying?” Little by little, personal stories came out that indicated a need for more information on how to deal with the end of life, something that is seldom remembered in medical and nursing schools. One of the nurses said that she did not know how to offer support to a woman who had lost her baby during birth, was then forced to remain among the nursing mothers while she recovered, and felt ashamed to go home and explain to her family that her baby had died during childbirth. For Bousso, “the pain of others should be recognized and respected so that loss can be faced with less suffering.”
Another question posed to participants in the course given at the USP Nursing School: “Who talks about death in your family?” Few did. The majority had heard of the Living Will, a declaration approved by the Federal Council of Medicine in 2012 that determines the treatments or procedures that a person agrees to submit to or refuse when he or she can no longer make a conscious choice. However, few participants had drawn up such wills for themselves or for family members, indicating that this topic is rarely remembered, even in nursing and medical school. The same thing takes place in primary and secondary school. “At schools today, we talk about sex, which used to be a topic that was off-limits, but say almost nothing about topics like death and grief, even when children lose friends or teachers,” comments Bousso.
This is not exclusively a Brazilian phenomenon. Based on 15,617 interviews with people 65 years of age or older in 11 countries (Australia, Canada, France, Germany, The Netherlands, New Zealand, Norway, Sweden, Switzerland, the United Kingdom and the United States), a team from the Commonwealth Fund, an American foundation that sponsors health care research, found that only 12% of those interviewed in France speak with their family and friends about the care they would accept if they were very ill and could not make decisions for themselves; inversely, this percentage is 78% in the United States and 72% in Germany. On December 10, 2014, speaking on a BBC radio program, Tony Walter, director of the Centre for Death & Society of the University of Bath, England, noted that people are still uncertain about how to express their feelings in relation to the death of their family members. His comment marked the beginning of a campaign with suggestions on how to support those who lose family members and may need more attention, principally at times like Christmas, when the loss is felt more acutely.
“Many doctors think that speaking of unsuccessful treatment is the same thing as declaring themselves a failure. They always prefer to encourage patients, often submitting them to painful and unnecessary procedures, without the opportunity to discuss death until it is imminent,” notes Maria Goretti Sales Maciel, director of the Hospice Care Service at the São Paulo State Civil Servants’ Hospital and President of the National Academy of Hospice Care (ANCP in Portuguese). Hospice care provides supportive measures designed to improve the quality of life for those with terminal illness and for their family members. The absence of dialogue about the end of life can lead to what she calls the transfer of responsibility; this occurs when a physician, facing the patient’s imminent death, asks the family members what they would like him to do for the patient. “When the team, family and the patient discuss the treatment options from the beginning, it is much more comfortable for everyone.” She remembers a recent situation: the hospice team recognized that there was doubt as to whether radiation therapy would provide worthwhile benefits to a woman with advanced brain cancer, and decided to speak with the patient. “She too did not want to undergo radiation therapy, so she returned home. We have to make decisions together,” says Maria Maciel, who has a background in family and community medicine.
In a study conducted with 300 families of cancer inpatients at the intensive therapy unit of the A.C. Camargo Cancer Center in São Paulo, psychologist Renata Fumis, currently a researcher at Sírio-Libanês Hospital, found that a majority of family members (78.6%) wish to participate in the decision to take the patient off life support, such as artificial ventilation, principally in very serious cases. In another study conducted at A.C. Camargo, she found that half of the 164 families interviewed did not understand the diagnosis, treatment or prognosis of the hospitalized patients, a percentage that is very close to what was found in surveys conducted in France and in India. “The more time the hospital team spends with the family, hearing what they have to say, recognizing their emotions and answering their questions, the higher their satisfaction with the care and the lower their emotional stress will be,” says Fumis.
“Sensitive and empathetic communication between professionals, patients, relatives and colleagues” is one of the actions proposed to the teams that care for patients who cannot be cured, according to the manual published in 2012 by the ANCP, but many challenges remain in this area. “The practice [of hospice care] still lacks regulation, definitions and inclusion in health care policies in both the public and private sectors,” this document recognizes. “Most teams work without formal education and knowledge is based on self-taught initiatives by dedicated professionals and short-term courses, which are often not well-suited to our reality.”
One of the strategies adopted by the USP team to help families deal with the feelings associated with loss, such as sadness, anxiety and anguish are the so-called therapeutic letters, which are generally sent to mothers a few months after the loss of a child, recognizing the women’s courage over the months of hospitalization, using the vocabulary that they themselves used in their conversations with the hospital team, as described in an article on the USP team published in the Online Brazilian Journal of Nursing in 2010.
“Parents need to reconstruct the meaning of the losses they suffered and find new purpose in life,” says Bousso. She says that in the United States people speak more openly about death. The hospitals she visited during her six-month stay in Washington, DC offer activities designed to relieve the anguish of family members, such as camping or celebrations of life, in which the participants write notes to the people who died; afterwards, these messages are placed inside balloons, which are released from the hospital patio. “We can talk about dying in many ways, without necessarily mentioning the word death. For example: ‘What is it like for you to be going through this at this time? How can we plan for the coming days? What type of care do you expect for your child now and in the coming days?’”
Like family members, the doctors, nurses, nurses’ aides and physical therapists who work with seriously ill patients also need care, due to the emotional exhaustion, low personal fulfillment and other symptoms they suffer due to a syndrome called burnout, concluded Renata Fumis, based on a recently-concluded survey. “Burnout is associated with emotional suffering when, for example, the team sees patients’ lives being uselessly prolonged,” she says.
Pulmonologist Pedro Paulo Ayres plans to begin simulation exercises in April 2016 for patients at intensive therapy units with physicians, nurses, physical therapists and pharmacists in one of the rooms at the Sírio-Libanês Hospital training center. Using monitors, more experienced professionals can accompany the team’s decisions and behavior. In this way, they hope to promote leadership, respect for the team and clear communication. “We want to reduce the imbalance of power in decision-making, settle conflicts and give a voice to all team members,” he says.
For a year, oncologist Ana Lucia Coradazzi, of Amaral Carvalho Hospital in Jaú, in inland São Paulo State, has published a blog (nofinaldocorredor.com) that presents the stories of people who have lost family members and shows that “death does not have to be so sad and so bitter.” The physician took this initiative after watching colleagues who, unprepared to deal with death, avoided patients and their families for years. For her, suffering can be alleviated through dialogue, empathy and recognition of the desires and values of patients and their family members. “We have to recognize the limits of medical care and see when it becomes necessary to recommend other professionals to help the families,” she says.
1. The experience of the family and the professionals with regard to the end-of-life care of a seriously ill child: nursing in the prevention of complicated grief (nº 2014/19361-6); Grant mechanism Scholarships abroad – Regular (Children’s Research Institute, United States); Principal investigator Regina Szylit Bousso (EE-USP); Investment R$51,327.43.
2. Evaluation of physical and psychological conditions of patients and families after ICU discharge: analysis of differences between cancer patients and non-oncological patients (nº 2011/05672-1); Grant mechanism Young Investigators in Emerging Institutions Program; Principal investigator Renata Rego Lins Fumis (Hospital Sírio-Libanês); Investment R$321,467.40.
BOUSSO, R. S. et al. The art of therapeutic letters in caring for grieving families. Online Brazilian Journal of Nursing. V. 9, No. 2, 2010.
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FUMIS, R. R. L. and DEHEINZELIN, D. Respiratory support withdrawal in intensive care units: families, physicians and nurses views on two hypothetical clinical scenarios. Critical Care. V. 14, p. 1-8. 2010.
OSBORN, R. et al. International survey of older adults finds shortcomings in access, coordination, and patient-centered care. Health Affairs. V. 33, No. 12, p. 2247-55. 2014.