2007 - Latin America Sedation

SUPPORTIVE CARE INTERNATIONAL

Palliative sedation in Latin America: survey

on practices and attitudes

Jairo Moyano&Sofia Zambrano&César Ceballos& Carlos Miguel Santacruz&Carlos Guerrero

Received: 26 July 2007 / Accepted: 31 October 2007 / Published online: 11 December 2007

# Springer-Verlag 2007

Abstract

Introduction Palliative sedation (PS) is the subject of ethical and legal debates worldwide. Statistics of its utilization are available in developed countries; however, in Latin America, these data are scarcely known. The purpose of this research was to determine the practices and attitudes of palliativists in Latin America towards PS. Materials and methods Data was collected during the Latin American Congress on Palliative Care in Isla Margarita, Venezuela. A total of 89 professionals participated in this survey.

Results It was found that the use of PS was positively associated with being a physician and being members of a palliative care (PC) group. On the other hand, it was found that being a psychologist and identifying barriers toward PS limited its utilization.

Discussion The findings of this study support the need to establish clinical guidelines for its utilization and to educate other specialists on end-of-life care approaches, and the need to develop PC programs in acute care hospitals in Latin America.

Keywords Sedation . Latin America . Palliative . Refractory symptom

Introduction

Research on the use of sedation for palliative purposes at the end of life reveals significant variations. Its incidence

varies between 15% and 52% [1–5]. Generally, its indications are grouped in physical and psychological refractory symptoms, showing variations according to the origin of the information [6–10]. Most of the data originates in North America, Europe, and Japan; on the other hand, figures in Latin America are essentially unknown.

Most experts agree that PS is useful in a limited number of patients to relieve intractable suffering at the end of life, in cases of refractory symptoms while receiving optimal PC, and when there is a presumption of imminent death [6–9]. Among the legal and ethical aspects [11, 12], discussion regarding the possible reduction in the survival time is very important to make a difference with euthanasia [9], even though the only purpose of PS is the relief of refractory symptoms and clinical studies have found that sedation does not hasten death [13–16].

Although different descriptions exist, most authors consider the refractory nature of symptom as requisite for the application of PS, which is performed by a competent group of professionals with multidisciplinary orientation. With this, a multilateral consensus regarding the need for sedation leads to the final effect of symptom controlled by the reduction of the state of consciousness by means of a medication in a patient approaching the final stage of life [17,18].

The management of refractory existential suffering by PS is the major source of controversy. Besides handling refractory physical symptoms, which are most obvious for professionals not specialized in mental health, some researches have suggested that possible psychological indications should be considered including the loss of sense for life, fear of death, and the wish to have control over the moment of death [19]. The refractory nature of the symptom is established after starting, optimizing, and keeping an integrated management, including a

pharma-J. Moyano (*)

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Pain and Palliative Care, Department of Anesthesiology, University Hospital Fundación Santa Fe de Bogotá, Bogotá, SA, Colombia

cological scheme and psychological support therapy by a group of professionals trained in a comprehensive ap-proach. Thus, the purpose of PS is to control suffering, which has shown to be impossible to treat by any other means. Certainly, it is the last option for treatment [20–22]. In Latin America, most PC practices take place in acute care settings where the doctor–patient and family relation-ship is markedly limited in time and content. This leads to partial assessment of the patient in terminal state and his/ her family, and consequently, to underestimating the presence of psychological suffering and spiritual issues, which prior research has revealed to be high (13%) [19, 23] and sometimes more relevant than physical symptoms. The indication of sedation in case of existential and physical refractory symptoms must be preceded by a detailed and open discussion of its objectives and out-comes, and by the optimization of PC treatment to guarantee that its use is not motivated by a wish to over-come deficiencies in clinical skills. Moreover, including the family and the patient in the decision-making process is indisputable. During the family discussion, it is of paramount importance to make it clear that the main objective for administering PS is symptom relief and that this process should be monitored and gradually estab-lished. To know the thoughts of Latin American specialists regarding PS, a survey was carried out on a multinational and multiprofessional group of PC experts.

Materials and methods

The instrument was a questionnaire developed by the Pain and Palliative Care Group at the University Hospital Fundación Santa Fe de Bogotá (FSFB) after an extensive literature search. Each question was made taking into account the understanding, shortness, simplicity, and unambiguous requirements needed in this type of ques-tionnaires. When the items were ready, the questionnaire was pilot tested with nurses, residents, and staff members of the hospital, asking them to evaluate it on language, clarity of terms, length, and specificity. A revised version of the instrument was made after the pilot test. To our knowledge, this is the first international survey available on terminal sedation in Latin America. The survey collected general demographic features and information related to the type of practice and technical aspects related to PS. The instrument was administered to the professio-nals who attended the Latin American Congress on Palliative Care, Isla Margarita, Venezuela on March 2006. On the opening day of the meeting, the survey was announced, and on the following days, those who attended the meeting were repeatedly invited to participate in the survey.

Statistical analysis

A univariate analysis was performed to identify those variables that could be associated with the use of PS. For the analysis, the missing answers were identified by replacing the missing value by the one obtained from another individual who was closest to the individual not supplying the answer. To do this, a Euclidean function of distance, which uses the values of variables for which replies were obtained, was used.

Results

A total of 256 health care professionals attended the meeting, and 89 (34.7%) of them answered the survey; 82 out of 89 (92.1%) considered PS as a therapeutic option (Table 1).

There were 62 physicians, 13 psychologists, 10 nurses, and 4 other professionals who completed the questionnaire. Among those who accepted to answer the questionnaire, the overall response rate was 95.8%; the higher rate of no response to a particular question was about the number of patients seen (40%) and religious beliefs (35%).

Most participants of the meeting came from Venezuela (40.45%) (Table2).

The univariate analysis (Fisher's exact test) showed that PS is associated with the following variables: (1) the type of profession (p=0.015); (2) being a member of a PC team (p=0.043); and (3) the presence of barriers to PS (p=0.003). After individualization, it was found that the use of PS is positively associated with being a doctor (OR=6.81, 95%IC =1–74.6) and with being part of a PC group (OR= 5, 95%IC=0.74–36.7). On the contrary, it was found that being a psychologist and finding barriers to make use of TST limit its use (OR=0.0924, 95%IC =0.0121–0.669) and OR=0.059, 95%IC=0.0074–0.464, respectively.

Statistically insignificant results were as follows: by gender, it was found that 100% of men and 74% of women use PS; all of those having more than 10 years of experience and 90% of those with less than 10 years of experience use PS; and 88% of people younger than

Table 1 Use of palliative sedation Gender

Palliative sedation Female, n (%) Male, n (%) Total, n (%) Yes 61(74.39) 21(25.61) 82(100.0) No 7(100.0) 0(0.0) 7(100) Total 68(76.4) 21(23.6) 89(100.0) Fischer's exact test, p=0.192.

35 years and 94% older than 35 years consider PS to be a therapeutic option.

Of the survey respondents, 71% had been trained in PC, of which, 94% agree on the use of sedation. On the other hand, 84% of those with no training in PC use PS, but nearly 80% of them belong to a PC team.

Participating professionals belonged to the following institutions: 39% general (university) hospitals, 41% public hospitals, and 20% private institutions. About 85% of participants were Catholic, and 92% of them perform PS. Of those who perform PS, 98% declare that they differen-tiate it ethically from euthanasia. PS is mostly used in the treatment of physical symptoms (Fig.1); 68% consider the decision to carry out PS as a result of a consensus from an interdisciplinary group. Life expectancy is not a consider-ation for PS (Table3).

Discussion

The main finding in this study is that belonging to a PC group and being a physician are significantly associated with the use of PS at the end of life. The authors have found that, in their region, the management of symptoms with PS follows the guidelines stated by experts [17]. It is based on the decision of an interdisciplinary group of experts with full informed consent from the family and the patient; always in the presence of symptoms, which are certainly refractory; and the drive for symptom control. Although the regional development of PC is generally limited, PS is not used as a method to overcome the lack of clinical expertise. The analysis of barriers to PS includes an important number of legal or institutional considerations, which may mean that, although the intention of PS is not to cause death, it may be misinterpreted within the acute hospital context as a way of provoking death. Thus, the practice of PS is attributed to the lack of knowledge on PC by the other professionals (Fig. 2). In acute care settings where most surveyed professionals work and where a large part of PC is practiced in Latin America, it is important to consider the dissemination of the information on PS specifically among those outside the PC group, involving not only other services, but also people from other professions to fill the gaps limiting this option of care in the final stages of life.

Regarding professions, psychologists were found to represent more than half of those who do not agree with terminal sedation, although the number of psychologists is too limited to be conclusive. The findings related with being a psychologist and refusing to apply PS may point to a lack of conceptual clarity regarding refractory symptoms at the end of life. Some psychologists might assimilate terminal sedation to a method to ‘silence’ symptoms. Consequently, because of their background, they cannot agree with this practice. However, most psychologists take part in interdisciplinary groups, a fact that facilitates the decision-making process. 0 20 40 60 80 100 GI *PS **FS Pain % of answers

Delirium Dyspnea Others

Indication No indication

* Patient psychological suffering **Family psychological suffering

Fig. 1 Indication to use palliative sedation. PS patient psychological suffering, FS family psychological suffering

Table 2 Demographics of the survey participants

Demographics N (%) Gender Female 68(76.4) Male 21(23.6) Profession Physicians 62(69.66) Nurses 10(11.24) Psychologist 13(14.61) Others 4(4.49) Country Colombia 12(13.48) Argentina 3(3.37) Brazil 7(7.87) Costa Rica 2(2.25) Ecuador 7(7.87) México 1(1.12) Perú 2(2.25) Uruguay 3(3.37) Venezuela 36(40.45) Dominican Republic 2(2.25) Others 4(4.49)

Belonging to a PC group acts as a protecting factor, making it possible to take advantage of the clinical skills of the more experienced members and the questioning of members with not enough training or experience in PC. Nearly 80% of the professionals attending the meeting participate in a PC team.

Another aspect to be highlighted is that PS is performed regardless of the type of health institution, which means that access to this treatment is not limited because of the economic arguments characterizing the region. No differ-ences were found in terms of the religion of participants. The tendency to perform PS is also observed in participants who consider themselves to be practitioners of Catholic religion. With regard to the differences between terminal sedation and euthanasia, 93.5% of them consider that there are ethical differences between these two.

It should be noted that common indications for PS, such as dyspnea and refractory pain, were not considered as indications by 40% of the participants in the survey. In contrast, the category of psychological suffering was considered to be a potential indication in most of the cases. Furthermore, the psychological suffering of the family was also considered. This is a surprising finding because PC teams in Latin America do not always include the presence of a psychologist, and it is up to the medical staff to draw the diagnosis of psychological distress and its management. A descriptive earlier study carried out in Europe revealed that an important predictor of attitudes toward end-of-life decisions is country [24] reconfirming, in this way, the decisive role of cultural beliefs during decision making with respect to terminal sedation. However, the results of this study do not match this finding because no differences

were found among countries, which may correspond to the large cultural similarities among the participating groups. Likewise, the differences among the different notions of death facilitate or make it difficult to decide about starting PS. In places where people believe in reincarnation or in life as a transit, as in the Eastern cultures, the decision may differ from that in Western cultures, which generally consider the different ways of prolonging life in view of the imminence of its end [25–30].

The development of PC programs in Latin-American countries should be a public health priority. However, in most countries, PC is limited to some focal points and it is not a nationwide policy. Hence, those well-established groups of experts, as in our sample, have a leading role in the discussion of the PS, knowing their local influence.

These results are considered valid because the popula-tion attending the meeting represents those practicing PC in the region. Moreover, this is the only specialized regional congress. This research is preliminary and further research would attempt to include a larger number of people according to the professional groups intervening in PC, so that the different variables can be made evident with respect to the end-of-life care so results depends mostly on doctors responses and other health care professionals are not well represented. Another limitation is the number of participants from different countries and, maybe, different beliefs. How-ever, among the data that the authors possess, this is the only study describing the attitudes and practices regarding PS in Latin America, so it is an important reference.

The discussion on sedation at the end of life should also consider the problem of the quality of assistance because it is a resource that has been underused. It may contribute

Table 3 Palliative sedation and life expectancy

Palliative sedation <48 h, n (%) <1 week, n (%) <2 weeks, n (%) >2 weeks, n (%) Indifferent, n (%) Total, n (%) Yes 15 (18.28) 12 (14.63) 1 (1.22) 1 (1.22) 53 (64.63) 82 (100) No 1 (14.29) 0 (0.0) 1 (14.29) 0 (0.0) 5 (71.43) 7 (100) Total 16 (17.98) 12 (13.48) 2 (2.25) 1 (1.12) 58 (65.17) 89 (100.0) Fischer's exact test, p=0.263.

0 5 10 15 20 25 30 35 Technical issues Institutional restrictions % of answers Others Legal issues Moral conflicts Professionals opinion Relative,s opinions Other health

Fig. 2 Main barriers for palliative sedation

toward the improvement of palliative assistance, and its use is not limited by economic reasons but by conceptual limitations that will deny access to a cost-effective therapy.

Acknowledgement The authors thank Doctor Oscar Gamboa for the statistical assistance.

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