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Rev. bras. ter. intensiva vol.23 no.4 São Paulo Oct./Dec. 2011
End of life in intensive care: family members' acceptance of orthotanasia
Maria Fernanda Gonçalves dos Santos; Débora Pastore Bassitt
Post-Graduate Health Sciences Program, Instituto de Assistência Médica ao Servidor Público Estadual - IAMSPE - São Paulo (SP), Brazil
OBJECTIVES: This study aimed to assess family member acceptance of
orthotanasia as related to symptom management, patient preference and the influence
medical team's communication on therapy.
METHODS: This was a descriptive one-year study conducted at the adult intensive care unit of the Hospital do Servidor Público Estadual. A structured questionnaire based on the Quality of Dying and Death (QODD 22) instrument and prior informal interviews were used.
RESULTS: Sixty family members were assessed; the mean age was 51.7 + 12.1 years, and 81.7% were female. The patients were hospitalized for a mean of 31 + 26.9 days, and 17.0% of these days were spent in the intensive care unit. Most of the patients had neurological conditions. Most of the patients (53.3%) had discussed their end-of-life care wishes with family members; however, 76.7% of them had not discussed this issue with their doctors (p < 0.00). The family members reported being favorable to orthotanasia in 83.3% of the cases. Most (85.0%) desired the medical team to clearly approach the subject, and 65.0% wished to take part in the quality of end-of-life decision making process. The family members were generally satisfied with information they received from the doctors: 93.3% believed they had received appropriately frequent communications about the clinical conditions; 81.7% were able to clarify their doubts regarding the patient's clinical status; the communication was understood by 83.3% of the respondents; and 80.0% believed that clear and honest information had been provided. Only 43.3% of the respondents wished to be present at the time of their loved ones' deaths. A significant association between family member acceptance of orthotanasia and participation in end-of-life decisions (p = 0.042) was observed.
CONCLUSIONS: Most of the respondents were favorable to orthotanasia and wished to participate in end-of-life discussions.
Keywords: Family; Critical illness; Intensive care; Attitude to death; Ethics; Communication
Bioethics emphasizes that life support limitation (LSL) should be considered in intensive care unit (ICU) patients for whom maintaining vital signs is only prolonging the death process in irreversible and incurable cases.(1)
Worldwide consensus statements designed to improve the care of end-of-life patients have recently been developed.(2) Despite the increasing LSL discussions, however, establishing standard procedures is difficult in Brazil. Brazilian intensive care physicians usually prefer "non-resuscitation" approaches, while in the Northern Hemisphere, removing patients from mechanical ventilation is part of routine care.(3)
End-of-life ICU care is well established in other countries and requires specialized knowledge from physicians and other critical care professionals.(4) In the United States and Europe, there are clear guidelines for palliative ICU care, such as symptom management strategies, patient/family communication skills, spiritual support, emotional support for the medical team and palliative care education.(5)
The medical team should educate the family members on treatment futility if curative procedures are continued without clinical response. Removing or limiting life support will have no impact on the condition's outcome, and improving end-of-life (orthotanasia) quality is necessary.(6) This approach allows family members (or their legal representatives) to understand the end-of-life decision making process when the patient is unable to participate (according to articles 24 and 41 of the new Brazilian Medical Ethics Code, which has been in force since 2010).(7)
Several research reports have emphasized the importance of family participation in LSL decisions.(8) The obstacles to family participation in the end-of-life decision making process are related to defective (and/or superficial) communication between the physician and family members,(9) particularly failing to provide clear information about the patient's prognosis.(10)
Recent studies have shown that, LSL decisions in Brazil are mostly focused on the medical perspective, with limited participation by the family(11) and other team members.(12) Although some intensive care physicians still fear sharing end-of-life decisions with the family,(13) the medical team should encourage families to become involved in the process.(14)
This study aimed to assess the relationship between family member acceptance of end-of-life decisions and their perceptions of the clinical status, their satisfaction with the medical team's communication regarding treatment and the patient's preferences regarding end-of-life quality.
After receiving the appropriate approval from the institution's ethics committee (approval document: CEP 004/09), a descriptive study was conducted in the 27-bed adult ICU of the Hospital do Servidor Público Estadual (HSPE-FMO), a tertiary hospital. This ICU receives both medical and surgical patients. The study assessed the orthotanasia knowledge of the family members of all patients admitted to the ICU from April 2009 to April 2010 who had an end-of-life diagnosis and who stayed more than 5 days in the ICU. All of the participants signed a voluntary participation informed consent form. The confidentiality of the patients and family members was assured. Family members were excluded if they continued to expect clinical improvement despite clear communication of the patient's terminal prognosis in the initial interview.
The interviews were conducted by a single investigator, in a separate and private area. After the family structure (father, mother and children) and understanding of the disease history, clinical status, and prognosis were briefly assessed, the participant was asked to complete the questionnaire.
This structured questionnaire was based on the Quality of Dying and Death questionnaire (QODD 22)(15) instrument and consisted of 22 questions. The questionnaire had been previously validated by having 10 family members complete it and verifying their full understanding of the questions.
The questionnaire was divided into 4 parts. The first part focused on assessing knowledge of the patient's clinical and emotional status, along with the emotions related to several aspects of the treatment. The second part analyzed family satisfaction with the medical information provided. The third part contained questions related to end-of-life quality, such as whether the family members would like to discuss end-of-life care, participate in the decision making process (e.g., whether to intubate) or had discussed the patient's preferences with the physician or among themselves. Before proceeding to the third part, the questionnaire presented a short explanation of orthotanasia and provided information to which the participants could express either agreement or disagreement. Finally, some room was provided for comments and reporting the emotions evoked by various aspects of the survey. The fourth part addressed background information, such as the family members' socio-demographic characteristics.
The study results were analyzed using the SPSS version 17.0 statistical software package. The descriptive statistics consisted of the usual measures of central trend and dispersion, in addition to absolute and relative frequency calculations. A 95% confidence interval was used. The Chi-squared test was used to assess the association between the family members' opinion on orthotanasia and their demographic data, their satisfaction with the information provided to family members by the medical team and the discussion of and participation in the end-of-life care.
From a total of 75 irreversible patients seen during the study period, only 60 families consented to participate in the study. The most common diagnoses were stroke (31.7%), chronic obstructive pulmonary disease (COPD) with supplemental oxygen dependency (23.3%), metastatic cancer (20.0%), multiple organ dysfunction (13.3%) and prolonged cardiorespiratory arrest (11.7%). The mean patient age was 77.2 + 12.5 years, 53.3% were male and 70.0% were catholic. The mean ICU stay was 17.5 + 11.9 days (Table 1). All of the patients were receiving opiates. Table 1 show the demographic characteristics of the family members who consented to participate. Most of the family members were the patients' children (65.0%), catholic (63.3%) and had a college education (35.0%).
In the investigation of the family members' perceptions of the patients' overall condition, 58.3% considered pain to be appropriately managed, and 71.7% believed that the patient's dignity was preserved (Table 2). Most of the patients (88%) were receiving mechanical ventilation, and 90.0% of the family members felt that the patients didn't breathe comfortably.
Most of the family members were unable to assess the patient's fear of dying (55%) or whether the patients felt peaceful during their final days in the ICU (43.3%), most likely because the patients were not responsive and were perceived by most of the respondents (73.3%) to have no control over the situation.
Regarding the family members' satisfaction with the medical information provided, 93.3% felt they had received appropriately frequent communication from the physicians, 81.7% had their questions on the patient's clinical condition clarified, and 83.3% of the communication was understood; 80.0% felt they had received clear and honest communication. In the discussions of end-of-life care (Table 3), 76.7% of the respondents reported that the patients had had no previous discussions with their physicians on end-of-life quality, but 53.3% had discussed it with their family members (p < 0.001). Regarding family participation in the end-of-life decision making process, 65% wished to participate and 85% desired the medical team to clearly approach the issue. Overall, 83.3% of the respondents reported to be favorable to orthotanasia. Most of the respondents showed awareness of the orthotanasia concept (85%); 56.3% mentioned that it was related to not prolonging their loved one's suffering, while 26.7% added no comments. Of the 16.7% family members who were opposed to orthotanasia, 6.7% added no comments, 5% referred to their religious beliefs and 5% wished to further discuss the subject.
The family members' position on orthotanasia was significantly associated with their participation (having knowledge and being able to express an opinion) in the end-of-life decision making process (p = 0.042). No significant associations between the family members' acceptance of orthotanasia and gender (p = 0.499), education level (p = 0.955) or religion (p = 0.364) were found. No significant associations between communicating the clinical status to the family members and the frequency of information (p = 0.343), opportunities to have their treatment questions clarified (p = 0.852), clarity and honesty (p = 0.843) or understanding of the information were found (p = 0.887).
In this study of the family members of end-of-life ICU patients, we identified their willingness to take part in LSL decisions, their perception of the severity of clinical conditions and their knowledge of the patient's preferences regarding end-of-life quality. In addition, medical team communication was considered to be satisfactory.
Although there have been relatively few investigations into family acceptance of orthotanasia, this study is consistent with previous studies showing that most of the family members are favorable(16-18) and that this position is significantly associated with their participation in the LSL decision making process. We noticed that family preferences regarding end-of-life decisions have changed; currently, family members question maintaining life support for terminal patients. As has been shown in some previous studies, family participation in LSL decisions is not particularly encouraged by most of medical teams, probably due to their own difficulties dealing with end-of-life dilemmas.(19)
Family members perceive LSL to be measures taken in the patient's best interest and, therefore, to be acceptable. Life-maintenance paradigms are questioned when family members appreciate irreversibility and the prolongation of suffering. Death is seen as a relief or rest that frees the patient from pain, famine, thirst and helplessness.(20,21) In addition to mitigating suffering, fulfilling the family's regarding life support limitation preferences also preserves the patient's dignity, as has been shown in other studies.(18,22,23)
This study suggests that prior discussion of end-of-life care preferences with patients may reduce their influence on limiting and withholding life support, as has been shown in another study.(22) However, this study also found that the patients did not discuss their end-of-life care with their physicians. Recent research conducted in a number of Brazilian hospitals has shown that in cases where patients are unable to take part in end-of-life care discussions due to their clinical condition, most physicians are less likely to disagree with nurses and family members.(24) This conclusion agrees with that of another study that was conducted in the US.(25)
Several studies have stressed the relevance of medical team and patient/family member communication.(26-29) Published articles have described training programs to improve communication skills.(9,28) In addition to appropriately addressing the patients' symptoms, families expect the medical team to address some of the families' specific needs, such as providing attention, honest information, comfort, respect for their emotions and spiritual support, in addition to responding to their doubts. Satisfaction with medical team communication contributes to end-of-life decision making.
Not all family members are ready to decide on end-of-life issues. Family members who did not take part in the study commented that they were aware of the patient's irreversibility but were unable to participate. One study has shown that family members with a passive role in the decision making process manifest anxiety and depression symptoms.(30)
It could be said that each family has a particular reaction to terminality. These reactions may be influenced by several factors, such as life history, culture, ideology, myths regarding the beginning and end of life, religion and other issues. All of these factors may aid efforts to understand different families' perceptions of LSL measures.
The complexity of life and death discussions has led to the legalization of LSL decisions. In the US and some European countries, terminal patients are legally allowed to previously state their wishes on end-of-life decisions.(17) In Brazil, the Brazilian Federal Medical Council's has stated that respecting the patient's wishes is mandatory (the new Medical Ethics Code, April 2009).(5,14) In special cases, the family, as the patient's legal representative, can assume this right. Some studies have shown that life support limitation is increasing in several Brazilian regions, although it is not uniform.(2) Brazil, along with certain other Latin-American countries, is still discussing the recommended LSL steps.(3)
This study suggests that medical teams should include families in the end-of-life decision making process if they desire it. Because this practice is both legally and ethically supportable, medical teams have no reasons to fear sharing end-of-life decisions.
Death and the dying process are no longer simple events in which the dying person organized his/her own ceremony.(31) The life extension provided by technological advances favors discussions such as those mentioned in this paper.
Although the adapted QODD questionnaire was easily understood by the participants, this study has several limitations, such as the limited sample size and population and the lack of validated instruments for collecting the data. In addition, the data interpretation may have been biased by the investigator herself, in spite of training in this area. Even with these possible methodological biases, the data were sufficiently consistent to achieve the study aims. Future research could compare acceptance of orthotanasia based on family characteristics using a multi-center and multidisciplinary approach.
Most of the participants were favorable to orthotanasia. They expressed their willingness to take part in discussions related to end-of-life quality.
The authors would like to thank João Manoel Silva Júnior, M.D., and Sandra Vieira Cardoso, Psy.D. for their support during this study.
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author: Submitted on October 5, 2011 Conflicts of interest: None. This study was conducted at the intensive care unit, Hospital Servidor Público
Estadual "Francisco Morato de Oliveira" - HSPE-FMO - São Paulo (SP),
Maria Fernanda Gonçalves dos Santos
Av. Brigadeiro Luís Antonio, 3333 cj 34
Zip Code: 01401-001 - São Paulo (SP), Brazil
Phone: + 55 11 9981-1668
Accepted on November 28, 2011
Submitted on October 5, 2011
Conflicts of interest: None.
This study was conducted at the intensive care unit, Hospital Servidor Público Estadual "Francisco Morato de Oliveira" - HSPE-FMO - São Paulo (SP), Brazil.