Confidentiality for adolescents seeking reproductive health care in Lithuania: the perceptions of general practitioners.

Abstract: Confidentiality is a major determinant of the accessibility and acceptability of sexual and reproductive health care for adolescents. Previous research has revealed that Lithuanian adolescents lack confidence in guarantees of confidentiality in primary health care settings. This study aimed to assess the factors that affect general practitioners' decisions whether to respect confidentiality for Lithuanian adolescents under the age of 18. Twenty in-depth interviews were carried out with a purposive sample of general practitioners. The decision whether to respect confidentiality was found to be influenced by external forces, including the legislative framework and societal attitudes towards adolescent sexuality; institutional features in clinical facilities, such as the presence of a nurse during consultations and the openness of the medical record filing system; and individual factors, including GPs' relationships with adolescents' families and their personal attitudes towards sexual and reproductive health issues. The findings reflect the urgent need for a comprehensive policy to ensure adolescents' right to confidentiality in Lithuanian primary care settings, including legislative reforms, institutional changes in health care settings, professional guidelines and (self-)regulation, and changes in medical training and continuing medical education. Other ways to safeguard confidentiality in adolescent health services, such as establishing youth clinics, should also be explored.

Keywords: confidentiality, adolescents and young people, general practitioners, sexual and reproductive health, reproductive rights, Lithuania

Resume

La confidentialite est un determinant majeur de l'accessibilite et de l'acceptabilite des soins de sante genesique pour les adolescents. Des recherches anterieures ont revele que les adolescents lituaniens n'ont guere confiance dans les garanties de confidentialite offertes par les environnements de soins de sante primaires. Cette etude souhaitait evaluer les facteurs qui influencent les decisions des generalistes de respecter ou non la confidentialite pour les adolescents lituaniens de moins de 18 ans. Vingt entretiens approfondis ont ete menes avec un echantillon choisi a dessein de generalistes, Ils ont revele que la decision de respecter ou non la confidentialite etait influencee par des facteurs externes, notamment le cadre legislatif et les attitudes de la societe a l'egard de la sexualite des adolescents ; des caracteristiques institutionnelles dans les centres cliniques, comme la presence d'une infirmiere pendant les consultations et la transparence du classement des dossiers medicaux ; et des facteurs individuels, particulierement les relations du medecin avec les familles des adolescents et son opinion sur les questions de sante genesique. Les conclusions montrent qu'il faut disposer rapidement d'une politique globale garantissant le droit des adolescents a la confidentialite, avec des reformes legislatives, des changements institutionnels, des directives et des (auto)reglements professionnels, ainsi que des modifications de la formation medicale initiale et continue, Il convient aussi d'envisager d'autres moyens de proteger la confidentialite, par exemple en creant des dispensaires pourjeunes.

Resumen

La confidencialidad es un determinante principal de la accesibilidad y aceptacion de los servicios de salud sexual y reproductiva de los adolescentes, quienes, en Lituania, no confian en las garantias de confidencialidad en los establecimientos del primer nivel de atencion, segun investigaciones anteriores. El objetivo de este estudio fue evaluar los factores que afectan las decisiones de los medicos generales de respetar o no la confidencialidad de los lituanos menores de 18 anos. Mediante 20 entrevistas a profundidad con una muestra intencional de medicos generales, se encontre que dicha decision es influenciada por fuerzas externas, como el marco legislativo y las actitudes de la sociedad hacia la sexualidad de los adolescentes; las caracteristicas institucionales en los establecimientos de salud, como la presencia de una enfermera durante las consultas y el facil acceso a los registros medicos; y factores individuales, incluidas las relaciones de los medicos generales con la familia del adolescente y sus actitudes personales hacia los aspectos de salud sexual y reproductiva. Los resultados reflejan la necesidad urgente de formular una politica integral para garantizar el derecho de los adolescentes a la confidencialidad en el primer nivel de atencion, que incluya reformas legislativas, cambios institucionales en los establecimientos de salud, normas profesionales y (auto)regulacion, y cambios en la capacitacion y formacion medica continua. Tambion deberian explorarse otras formas de salvaguardar la confidencialidad en los servicios de salud de los adolescentes, como establecer clinicas de jovenes.

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CONFIDENTIALITY within the doctor-patient relationship influences adolescent uptake of sexual and reproductive health care, as well as the quality of the medical encounter and continuity of care. (1-4) Often perceived as a controversial issue, confidentiality in adolescent sexual and reproductive health care is protected by international legal instruments. (5,6) Although such instruments are often legally enforceable, many health systems fail to live up to this commitment. (7)

Surveys in Lithuania show an early onset of sexual activity. The mean age at first sexual intercourse reported in the Health Behaviour in School-Aged Children study among 15-year-olds was the lowest in the countries in the Americas and Europe that took part: 13.5 years for boys, 13.6 years for girls (compared to an average of 14.0 years and 14.3 years respectively), (8) A cross-sectional study of 1,271 pupils from secondary and vocational schools in Kaunas, Lithuania, aged 13-19, revealed that young people needed counselling on sexual issues and perceived physicians to be the most reliable source of such information. (9) However, young people avoided medical consultations, citing lack of confidentiality as a major reason. Only 32% of respondents believed that primary health care providers would assure confidentiality in contraceptive counselling, while only 18.9% expressed trust in confidentiality for sexually transmitted infection (STI) consultations. (9) A qualitative study in 2003-04 revealed that Lithuanian patients who are minors (under age 18) (10) are largely unaware of their fight to confidentiality in health care, nor do they think that the institutional features of the health care system help to protect their confidentiality. (11)

Sexual and reproductive health care in Lithuania was traditionally provided by gynaecologists. After the collapse of the Soviet system, the country's health system was reformed to develop a primary care network, giving the population free access to general practitioners (GPs), to whom a gatekeeping function was assigned. (12) Sexual and reproductive health services--contraception, treatment of sexually transmitted diseases (STDs) and care of uncomplicated pregnancies--was entrusted to GPs. (13) Since general practice had not existed in the highly specialised Soviet health care system, the lack of GPs was covered by retraining of district paediatricians and district internists, some of whom were close to retirement age.

In a representative survey of 419 primary health care providers in Lithuania, physicians gave their own guarantee of confidentiality for adolescents a high rating. Seventy-two per cent reported that they would assure confidentiality when adolescents consulted them about contraception, and 52.6% when adolescents consulted them on STIs. Higher levels of protection of confidentiality for under-age patients were reported by providers who were younger, those who were more knowledgeable about sexual and reproductive health issues and those who had positive attitudes towards adolescent sexual and reproductive health needs. (14)

Minors' lack of trust in medical confidentiality may be symptomatic of general difficulties that Lithuanians have encountered with lack of protection of medical information under the post-Soviet health care system (15) and professional shortcomings in delivering adolescent health services that touch on socially sensitive issues. Reproductive rights are controversial in Lithuania, and efforts to promote them have attracted opposition from conservative strata of the population. (16) The Catholic church, a traditional opponent of such rights, has also become increasingly influential since the collapse of the Soviet regime. Efforts to strengthen adolescents' right to confidentiality in health services are portrayed in the mass media as a threat to family cohesion ("As parents, we would not know about the most important issues") and healthy development ("Adolescents would seek to dissociate themselves from their parents and could 'safely' use drugs, receive abortions, etc."). (17) A law ensuring the protection of reproductive rights and emphasising the importance of a youth-friendly approach when providing sexual and reproductive health care to minors, developed with professional societies and interest groups, was voted down by Parliament in 2002. (18)

Legal instruments that support adolescents' right to confidentiality in health care

The United Nations Convention on the Rights of the Child, (5) which addresses the rights of individuals younger than 18, stresses children's right to health care, including sex education and family planning services, and highlights every country's responsibility to ensure such access. The Convention also stresses parents' duty to care for their children and to acknowledge in doing so their children's "evolving capacities". Cook and Dickens have stated that parental over-protectiveness can hinder adolescent development, mentioning also that, "in requiring legal respect for adolescents' evolving capacities, the Children's Convention sets legal limits to inappropriate, obstructive and dysfunctional parentalism." (7)

In Lithuania, the formulation of the Law on the Rights of Patients and Compensation for Health Damage (19) was influenced by the Declaration on the Promotion of Patients' Rights in Europe (20) and other international obligations. (21) According to Lithuania's Law on Protection of Children's Rights, (10) every person younger than 18 has the right to services for disease prevention, quality health care and health promotion, including the right to health information and education. The state covers the cost of these services for those under 18, as stipulated by the Law on Health Insurance. (22)

Patients' rights are legally protected under the Lithuanian health system--"patients' rights cannot be derogated on the basis of gender, race, age or [...] other legally invalid grounds". (19) Minors' rights to confidential health services are legally limited, however, since their legal representatives "have a right to access the medical data of minor patients". (19) Thus, the law does not protect patient confidentiality when health professionals provide health and personal information to the parents or other legal representatives of minors. (23) Nevertheless, the law also states that a violation of confidentiality must not contradict the interests of the under-age patient. (19) If such a violation might "compromise the interests of minor patients", the legislation stresses the importance of protecting confidentiality. However, parental notification remains compulsory for the hospitalisation of a young person under 18 and for an abortion in a young woman under 16. (19,24)

The current legislation is thus contradictory and confusing. The various legal instruments do not indicate which interests of under-age patients take priority, nor do they provide any criteria that would help a health care provider make a decision about maintaining confidentiality. The law became even more vague with the 2005 revision of the Lithuanian Law on the Rights of Patients and Compensation for Health Damage, due to the removal of a previous provision emphasising the duty of health care providers "to be guided by the interests of the minor in case of disagreements between parents and children." (19)

This paper reports on one component of a larger study of adolescent sexual and reproductive health promotion policy in Lithuania. Given the discrepancy between adolescents' and health care providers' assessments of physician contidentiality, and the legal ambiguities involved, this component of the study sought to investigate general practitioners' perceptions of confidentiality, and the factors that influenced GPs' decision whether or not to protect the confidentiality of adolescents seeking sexual and reproductive health care.

Methods

The larger study was carried out between July and November 2003 in Kaunas, the second-largest city of Lithuania. According to the country's Register of National Sickness Funds, 35 private and 46 public general practices in Kaunas were providing primary care services in autumn 2002. (25) The gender and age breakdown of Kaunas GPs is not precisely known, but according to recent figures, 84.9% of all Lithuanian GPs are women, while 4.9% of them are older than 50 and 2.5% older than 60. (26) It is estimated that 23% of the country's GPs received their family practice training during their residencies, while the others, mostly paediatricians and internists, were retrained. (26)

In autumn 2002, general practitioners in Kaunas provided primary care services to 60% of the population. (25) The remaining 40% were covered by primary care teams comprised of paediatricians, internists, gynaecologists and surgeons. Youth health clinics were practically nonexistent in Lithuania. There were a few youth health centres in the largest towns, funded chiefly by international donors, which mainly provided peer education. Since the gatekeeping system was adopted in 1997, the GP has been almost the only health care provider that most of the population can consult directly for reproductive and sexual health issues and without charge.

Study participants were selected to provide a diverse representation of the views and experiences of general practitioners based on sex, age, training and place of work. The final sample comprised 20 GPs, 15 female and 5 male. Nine practised in public primary care settings, eight in private primary care centres and three in both public and private institutions, all of them working in urban Kaunas under contract with the sickness funds to provide free primary care services. Eight of the GPs had completed a general practice residency, while the others became GPs after vocational re-training. Ten of the GPs were aged 26-39, eight were aged 40-54 and two were 55+. They were selected using the snowball technique. The young people the GPs were serving were similar in terms of sex, class and educational level; however, the proportion of young people among the patients of the physicians was not always the same.

Unstructured, individual, in-depth interviews were used, as they provided more privacy for exploring personal attitudes towards sexual and reproductive health. All participants were informed ahead of time that the study would explore experiences, beliefs and attitudes towards the sexual and reproductive health care of adolescents. Participants were assured of anonymity.

The first author acted as the interviewer after completing introductory training in in-depth interviewing. The interviews were held in Lithuanian in the surgeries of participants at a time of their choosing. First, they were invited to describe some of their most recent adolescent consultations related to sexual or reproductive health issues. The interviews then focused on topics raised by the physicians themselves. The interviews lasted between 50 minutes and two hours, typically taking 1-1.5 hours.

The fact that the interviewer was herself a GP is thought to have facilitated discussion. However, during the interviews some of the physicians asked her about her own experiences or tried to use her as a source of "correct information". After revealing their own thoughts on an issue, some participants asked her what she would do or how they should proceed in such situations. The interviewer avoided providing her own views during the interview, responding that there were various opinions and that many physicians adopted the same position as the interviewee. This approach was intended to bolster the participant's confidence in his or her opinions and minimise the influence of the interviewer. After the interviews, relevant information on the topic was provided.

The interviews were tape-recorded, transcribed, translated from Lithuanian to English and then analysed using grounded theory. (27) Each element was coded, and related codes were gathered under main topics (e.g. confidentiality, gate-keeping, abortion) and summarised. All views were included in the coding process. Key factors were then identified, labelled and illustrated by quotations from the interviews. The quotations presented below were chosen as representative of the views of most GPs. The attitudes of these same 20 GPs towards the appropriateness of gatekeeping in adolescent sexual and reproductive health care are reported elsewhere. (28)

Findings

Most of the GPs interviewed claimed to be in favour of protecting the confidentiality of adolescents in the provision of sexual and reproductive health services. Factors that encouraged GPs not to observe confidentiality included an ambiguous legislative framework, current socio-cultural norms, the traditions of clinical practice and individual attitudes.

External factors

Legal regulations relating to adolescent health services and societal attitudes towards adolescent sexuality emerged as the most influential external factors in shaping GP attitudes towards confidentiality for adolescents.

With the emergence of medical malpractice suits in Lithuania, many of which are regarding obstetric care, legal concerns have assumed major importance in medical practices, and fears of legal liability are playing a larger role in GPs' professional decision-making.

"Many things in our medical practice are grounded in an inter-personal approach ... But when you are facing a lawsuit, you must enter the legal arena. And that frightens me." (GPgF32Y)

Most of the interviewees suggested that better-defined legislation would improve the confidentiality of sexual and reproductive health services for adolescents by decreasing physicians' anxiety about their liability.

"It would be easier for me if [the nature of confidentiality guarantees for minors] was clearly defined. Actually, when there is a real need, I must manoeuvre somewhat--not manoeuvre, but balance moral and legal issues." [GPTF36Y)

It appears that most Lithuanian GPs would regard an unambiguous legal framework for delivering adolescent sexual and reproductive health services primarily as a professional protection, and only secondarily as a platform for asserting adolescent patients' rights.

"Actually, doctors are the least protected." (GPllF51Y)

In the absence of more detailed legal guidelines, doctors must now rely on other arguments in making confidentiality decisions. In answer to the question "Where is the boundary between what parents should and should not know?" some of the GPs pointed to the influence of paternalistic social attitudes on their decisions.

"Let's say the parents are very religious or very conservative and they forbid their daughter to go on a date. I think I would be a very bad doctor and I would be stigmatised [if I counselled a teenage girl about contraception in confidence, unbeknownst to her parents]." (GP5M39Y)

Institutional factors

Certain institutional features of primary health care services, such as the tradition of having a nurse present during physician consultations, or the nature of medical record filing systems, can seriously compromise patient confidentiality.

As a legacy of the Soviet era, physicians and nurses work in the same consulting room in many Lithuanian primary care centres. Most primary care patients must face the fact that the most intimate details of their consultations will be known to nurses as well as doctors.

GP: "She [the patient] is calm, unperturbed that this is killing or something like that. She just came to have an abortion. We wondered ..."

Interviewer: "Who did you wonder with?"

GP: "With the nurse. She listens, hears anyhow ..." (GP13F38Y)

All the doctors agreed that speaking about intimate matters with adolescents in the presence of a nurse was a waste of time, because the adolescents would not answer truthfully, and therefore it was better not to touch upon sexual and reproductive health matters at all. Thus, consultation without a nurse in the room seemed to be one of the most significant advantages of private primary care centres over traditional polyclinics.

The protection of medical information, however, was said to be subject to the same problems at the small reception desks of private clinics as in the huge reception areas of traditional polyclinics. In short, the ready availability of medical records is an open secret in Lithuania.

"The information on the medical cards is easily accessible to many people: the medical staff, parents--they can browse while waiting." (GP 19F35Y)

Recording information on sexual and reproductive health matters is a real challenge for GPs as they are obliged by law to take notes, in spite of concerns about protecting confidentiality. This forces them to use various strategies for recording information. The GPs who recorded everything in their medical records believed that disclosure would be less damaging than an incomplete medical record. They were the ones who were also greatly concerned about their own professional liability. Others said they might divide what was discussed during consultations into what was "important" (medical) and "unimportant" (psychological, health-promoting). They would then record only the "important" observations and treat information about puberty, sexual activity and contraception as "nonmedical". Some encoded information by using vague phrases or specific codes to enable them to record essential information while protecting confidentiality. However, most GPs in the study did not include any information at all on sexual and reproductive health in medical records as the only sure way to ensure patient confidentiality.

Individual factors

Differing levels of legal knowledge, personal attitudes towards sexual and reproductive health issues and relationships with the families of adolescents over years of professional practice were prominent among the individual factors that affected protection of confidentiality by the GPs.

The overwhelming majority of those interviewed were not familiar with the provisions of the law, the lack of information often dating from their undergraduate studies.

"I know from my years of 'social medicine' [an educational module dealing with organisational aspects of health care] that parents or guardians are responsible for serious decisions, and the parent or guardian must sign informed consent. That I do know, but I don't know if there have been changes in recent ... years." (GP19F35Y)

Half the physicians were not worded about the legal requirements for medical practice, while the other half complained about the difficulties of maintaining their legal competence.

"Pick up this Government News [bulletin] and leaf through it. You are lost..." (GP5M39Y)

Although legally, the parental notification procedure should remain the same irrespective of the nature of the health problem, the GPs' attitudes to sexual and reproductive health matters differed greatly from their attitudes to other health matters. For example, in a case of tonsillitis, most GPs would not hesitate to prescribe antibiotics for a minor without notifying the parents, while few of them would dare to do the same with oral contraceptives for a sexually active young girl.

"This area is ... very sensitive in society. So, if something happened due to antibiotics, well, I was treating a serious illness, but with sexual problems, I think these issues are more sensitive, and some awful scandal would break out straightaway." (GP 19F35Y)

GPs also provide health services for the whole family and therefore often become emotionally involved with patient families. At least half of the interviewees said this discouraged them from maintaining medical confidentiality for the adolescents.

"[If] I know someone's parents, and I think: I am a mother too, so I would like to run and tell her mother about it ..." (GP2F47Y)

Thus, while knowledge of family context might help GPs to clarify the psychosocial dimension of patient problems, it can also become a barrier to confidentiality, especially in sexual and reproductive health care.

Discussion

General practitioners in many countries face the challenge of balancing parental concerns with adolescents' right to confidentiality in accordance with clinical guidelines and the body of law. (29-33) However, differences in legislation, traditions of medical practice, contemporary societal values and the attitudes of health care providers affect each national situation.

The vagueness of the relevant Lithuanian legislation, in contrast with that of other countries, (34,35) suggests that a precondition for guaranteeing medical confidentiality for minors is to amend the national legal framework. At first glance Lithuanian law may appear to provide grounds for guaranteeing confidentiality. However, there are no explanatory clauses that help in interpreting whether respecting confidentiality in particular cases is in the minor's interest or not, so GPs must depend a great deal on context and their own judgement.

Though societal attitudes on these matters in Lithuania tend to be heterogeneous, the combination of the Catholic church's opposition and the emergence of medical lawsuits in Lithuania seem to be making physicians exercise more caution than in the past. Moreover, lawyers are now informally advising physicians not to expose themselves to littigation by protecting the confidentiality of minors. In this context, GPs seem to be adopting avoidance as a general strategy.

The GPs in the present study stressed that clarifying the confidentiality laws would definitely affect current practice. Studies in other countries have also demonstrated changes in medical practices following changes in the law. (36) The lack of legal knowledge among the GPs interviewed, however, raises the question of whether legislative change would be reflected in medical practice very rapidly. Moreover, given that the proposed law on reproductive health was voted down in 2002, that medical abortion has not been approved and even the right to surgical abortion is being questioned, it is not realistic to expect any progress in adolescent confidentiality laws any time soon. However, while unambiguous legislation favours the development of professional guidelines for protecting adolescent confidentiality, (37) the current legal framework can be construed as supporting such protection and could still be employed as a basis for elaborating such guidelines at the present time.

General practitioners are clearly in a position to breach confidentiality and act as agents of social control with respect to early sexual activity among adolescents. Conversely, they are in a unique position to defend the rights of adolescents and educate their families, society and other medical personnel about these rights. As Diaz et al note, confusing circumstances can be an opportunity to provide parents with a lasting education on the importance of confidentiality. (34) Without collegial and professional support, however, Lithuanian GPs will be reluctant to contravene current public opinion. Professional (self-)regulation and expanded training in adolescent sexual and reproductive rights are therefore needed. To promote such developments, collaboration with colleagues from other countries who have experience in protecting these rights would be welcomed by Lithuanian primary health care providers.

In Lithuania, confidentiality is perceived as a dimension of the doctor-patient relationship but as physicians still see patients with a nurse in most public primary care centres, nurses can also violate confidentiality. As in other post-Soviet countries, mid-level health care providers and nurses in Lithuania are not fully involved in providing sexual and reproductive health services. (38) Virtually complete subordination to physicians robs them of the possibility for autonomous decision-making. Martin and Guillod point out (39) that a medical confidence is a professional confidence in the health professions. While respecting confidentiality is a duty of physicians and nurses alike, Lithuanian nurses cannot be held fully responsible in this sense. Separating the work areas of physicians and nurses in primary health care might positively affect not only confidentiality.

The ready availability of medical records to staff other than physicians can undermine individual physicians' efforts to protect confidentiality. Studies in other countries emphasise the need to avoid breaches of confidentiality in filing bills and other medical records and in storing and transmitting medical data electronically. (29, 37,40) In view of the difficulties of protecting medical data, there is a need for primary care centres to establish specific policies that protect patient confidentiality.

This is one of the first attempts to address confidentiality in adolescent health care in Lithuania and with this small sample, the findings cannot be generalised. However, the findings do suggest the need for major changes not only in GP training and also in the Lithuanian health system and health policy. Since GPs treat the whole family, they may not be in the best position to provide services to adolescents that require confidentiality.

The findings highlight the urgent need for a comprehensive policy to establish Lithuanian adolescents' right to confidentiality in primary care settings. The key elements of this strategy should include improved legislation, institutional changes in health care settings, professional (self-)regulation and guidelines, and changes in medical training and continuing medical education to stress adolescents' sexual and reproductive health needs and rights. Other ways to safeguard confidentiality in adolescent health services, such as establishing youth clinics, should also be explored.

Acknowledgements

The authors thank J Perriniaux and M Hoekstra for revision of the English in two versions of the manuscript. This study was supported by the Open Society Institute-Budapest through an International Policy Fellowship.

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Lina Jaruseviciene, (a) Gwenola Levasseur, (b) Jerker Liljestrand (c)

(a) Lecturer, Department of Family Medicine, Kaunas University of Medicine, Kaunas, Lithuania. E-mail: [e-mail]

(b) Professor, Department of General Practice, University of Rennes, and Associate Researcher LAPSS, National School of Public Health, Rennes, France

(c) Associate Professor, Department of Health Sciences, Lund University, Malmo, Sweden