Journal of Health Organization and Management Swedish politicians’ view of obstacles when dealing with priority settings in health care Elisabet Werntoft Anna-Karin Edberg

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JHOM 29,4

Swedish politicians’ view of obstacles when dealing with priority settings in health care

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Elisabet Werntoft Department of Health Sciences, Division of Nursing, Lund University, Lund, Sweden, and

Received 4 August 2014 Revised 4 August 2014 Accepted 10 September 2014

Anna-Karin Edberg

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Department of Health Sciences, Division of Nursing, Lund University, Lund, Sweden and The Swedish Institute for Health Sciences, Lund University, Lund, Sweden Abstract Purpose – The purpose of this paper is to identify and describe main obstacles for politicians when dealing with healthcare priority setting. Design/methodology/approach – The study had an exploratory descriptive design based on interviews with 18 politicians from two different county councils in Sweden. The interviews were analyzed using inductive qualitative content analysis. Findings – The politicians highlighted the importance of, and difficulties in, communicate political missions; the politicians in this study saw the media as not always being fair watchdogs, implying that possibly important but unpopular prioritizing decisions were not made because of the risks of being badly reported and therefore not re-elected. Breaking up established structures in care practice is difficult and change takes time, partly because of existing higher level financing and rules and the system’s traditional separation of facilities and services. Although the politicians highlighted their limited power to influence and control resource allocation they could give small and “lower profile”, low-prioritized disciplines control of their own budgets and base payments on the results the disciplines accomplished. Originality/value – This study highlights the difficulties that politicians experience, for example, having to take unpleasant decisions and thereby run the risk of being scrutinized by media, which in turn could influence how effectively tax money is being used. Keywords Decision making, Interviews, Qualitative research, Prioritization, Healthcare politicians Paper type Research paper

Journal of Health Organization and Management Vol. 29 No. 4, 2015 pp. 532-542 © Emerald Group Publishing Limited 1477-7266 DOI 10.1108/JHOM-08-2014-0131

Introduction Healthcare priority setting occurs on every level of policy making in every healthcare system in the world (Ham, 1997). As Goddard et al. (2006) states, priority setting in healthcare is undoubtedly a complex phenomenon. It is important that priority settings are made transparently and equally, on the same grounds regardless of who is behind the decision. In Sweden healthcare priorities are set at various levels, partly by healthcare politicians and partly by physicians and other healthcare staff. However, politicians and physicians do not always share the same views about how priorities should be made and how healthcare costs should be financed (Werntoft and Edberg, 2009a, b). According to earlier studies, the confidence that older people (Werntoft et al., 2005) and physicians (Werntoft and Edberg, 2009a, b) have in healthcare politicians is weak. If those responsible for rationing fail to confront the dilemmas directly, public confidence in the legitimacy of their decisions and those charged with making them will be undermined (Ham and Coulter, 2001). In order to understand and entrust the

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politicians’ ambitions it thus seems important to identify and describe their view of obstacles when dealing with healthcare priority settings. The role of politicians concerning prioritization should be viewed against the background of the Swedish model of publicly financed, but increasingly privately provided, healthcare and services for all citizens. Responsibilities with regard to healthcare and medical services are defined in the Health and Medical Services Act (SFS, 1982:763, 1982; National Board of Health and Welfare, 2004). According to this law, the municipalities (290 in total) are responsible for providing long-term social services and care for older people, housing for older people and for people with psychiatric disorders. The municipalities provide home service care, home nursing care and rehabilitation, among other things, while the 21 County Councils are responsible for medical healthcare, i.e. hospital care and primary healthcare, for all patients regardless of age. Both the County Councils and the municipalities are elected bodies and have the right to levy taxes (National Board of Health and Welfare, 2004). Prioritization on the political level, so called horizontal prioritization, concerns a variety of different fields including allocation of resources between non-institutional care and hospital treatment or between different disease groups. Policy makers are likely to consider the impact of policies on a variety of interest groups. It is therefore important to consider a range of public choice perspectives (Goddard et al., 2006). The ambition of the politicians (Coulter and Ham, 2000) is to achieve the goals set up for healthcare while meeting the need to keep costs down (SOU, 2001). Prioritization on the medical level, so called vertical prioritization, concerns how care should be carried out and how much effort should be made for individuals. The working staff makes these types of prioritizations, and they are also responsible for their decisions. The administrators in healthcare often have an intermediate position between the other two groups and are at risk of being caught in situations where vague decisions from the politicians may conflict with the working staff’s need for more resources (SOU, 2001). From the citizens’ point of view, being able to access healthcare and to have their needs fulfilled are the most important aspect of prioritization. From the professionals’ point of view, the ambition is to provide the best healthcare possible with the help of existing knowledge and resources. From the politicians’ point of view it is most important to achieve the goals that have been set up for healthcare with the available money (SOU, 2001). This means that they often have to make decisions that are unpopular, but in the best interests of the taxpayers. We as citizens, however, have limited knowledge about how they deal with these, sometimes difficult, situations. National guidelines for setting healthcare priorities are based on three ethical principles laid down by the Swedish Parliamentary Priority Commission (SOU, 2001): the principle of human dignity, meaning that every individual should have equal value and equal rights regardless of personal characteristics or role in society; the principle of need and solidarity, meaning that healthcare resources should be committed to people or activities having the greatest need; the cost-effectiveness principle, meaning that when choosing between different medical interventions there should be a reasonable relationship between costs and effects, measured as improvement in health and increased quality of life (SOU, 2001). The Swedish National Centre for Priority Setting in Healthcare has also suggested a controversial fourth ethical principle recommending personal responsibility for one’s own health implying both prevention of ill health and personal responsibility for choosing a healthy lifestyle, and as suggested by Carlsson (2007), including private financial commitments. However, this fourth principle has given rise to debate and the Swedish National Board of Health and Welfare has not

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reached agreement about accepting the proposed recommendation. The Swedish National Council on Medical Ethics has requested The Swedish National Centre for Priority Setting in Healthcare to continue the discussion and the reformation of the ethical principles (SMER, 2009). The results from a study, based on a questionnaire to 700 Swedish politicians and physicians, indicate that supplementary guiding principles concerning prioritization in healthcare are needed in order to facilitate decision making concerning resource allocation on a local level (Werntoft and Edberg, 2009a, b). As emphasized by Tinghög and Carlsson (2012), it is important for decision makers to have the support of substantive principles so they can openly discuss and explain what is behind the difficult decision they are forced to make. In Sweden, some attempts have been made to find tools that can help decision makers to explain and understand how priority settings can be made. For example, Tinghög and Carlsson (2012) applied an analytical framework aiming to explore the suitability of private financing of assistive devices. The one factor that seemed to influence most why certain assistive devices could be financed privately was the users’ economic status. Also Waldau et al. (2010) described the priority setting procedure in one County Council in Sweden. The procedure was constructed and tested by engaging the entire organization including priority setting within and between departments and political decision making. The different stakeholders were, in groups, supposed to identify service of low priority corresponding with 3 per cent of each department’s budget. The priority setting process was considered a success because it fulfilled its political goals. One of the success factors was political unity in support of the procedure, and a strong political commitment throughout the process. The study by Waldau et al. (2010) highlights the importance of the involvement of politicians in the priority setting process. We, however, have limited knowledge about the difficulties that politicians might face in this work. Aim The aim in this study was to identify and describe main obstacles for politicians when dealing with healthcare priority setting. Method Participants and data collection The participants were recruited using snowball sampling and comprised 18 politicians, nine women and nine men, aged 29-69 years from two different County Councils in Sweden. Snowball sampling means using initial contacts to identify other potential participants. An introduction from the referring person may make it easier for researchers to establish a trusting relationship with new participants and to ask for referrals to people who would add other dimensions to the subject (Polit and Beck, 2008). After each interview the participant was asked to recommend a colleague in the same position but not necessarily belonging to the same political party. The recommended politician was then sent a letter presenting the study and asking for their participation. Three recommended politicians, two members of the Moderate Party and one member of the Sweden Democrats declined participating due to a heavy workload. All political parties, except the Sweden Democrats, were represented among the participants. All but two interviews took place in the participants’ offices. Two interviews were conducted in the first author’s office. All interviews were carried out by the first author during 2010. The interview guide had four themes, presented to the participants

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beforehand in the information letter: experience of setting healthcare priorities and difficult decisions, grounds or evidence for decisions made, patients’ own responsibilities and resource allocation among disciplines/patients. The tape-recorded interviews lasted between 45 and 90 minutes, were transcribed verbatim by a secretary and checked for accuracy by the first author.

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Analysis The purpose of the method used in this study was to gain information based on the participants’ unique perspectives and grounded in the actual data (Hsieh and Shannon, 2005). The text was analysed using an inductive approach, also described as conventional qualitative content analysis (Hsieh and Shannon, 2005). The analysis was performed in several steps. At first the transcribed text was read and re-read independently by the two authors, to achieve immersion and gain a sense of the whole material. After discussing the impressions of the text a structure for the analysis was decided on. In the next step, meaning units, i.e. parts of the text such as sentences or utterances related to the aim of the study, were identified. The new text, composed of meaning units, was then reread and codes embracing the content of this text were identified. Codes of similar content were then grouped into meaningful clusters. This process was reflective, comparing the codes and the text and in discussion between the authors. In the last step the texts from the ten so called meaningful clusters were read and rearranged into four main categories (Hsieh and Shannon, 2005).

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Results The politicians’ reasoning about prioritization in healthcare was based on their own experience as well as on their perception of how prioritization ought to be done, and could be understood in four categories: (1) difficulties in mediating the political mission to the citizens; (2) difficulties to break old structures in care practice; (3) short budget and election periods limits the possibilities for long-term planning; and (4) having limited power to influence and control resource allocation. Difficulties in mediating the political mission to the citizens A common subject brought up by all participants was their difficulties in mediating their political mission to the citizens. The politicians highlighted the significance of contact with both the healthcare staff and the voters or citizens, not only in order to show their political opinion but rather to acquaint themselves with the citizens’ needs and requests. There were two obvious obstacles for this dialog; patients’ associations and, most of all, media. When a political decision was made, for example, that a person only could be subscribed one hearing aid instead of two, the patients’ associations for hearing impaired got agitated and blamed the politicians for being greedy. Most politicians thought that media or journalists held a large responsibility for the citizens’ mistrust in their work. Suggestions or decisions made by healthcare politicians in any way of prioritization were without exception given headlines that turned the politicians into scapegoats and made the political work hard to accomplish. As soon as a prioritization was decided on, it was given headlines in the papers together with sob

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stories about affected persons, and the reasons behind the decisions was seldom explained. After such headlines, the politicians often received rude and threatening phone calls and e-mails from citizens. Several politicians exemplified with the attempt from one Swedish County Council, Östergötland, which a couple of years ago tried to perform open lists for prioritization in healthcare. This attempt did, according to the participants, upset the citizens mainly because of the way media presented it, resulting in that and the County Council had to withdraw the lists, although politicians and healthcare professions had developed them together: I really want to emphasize the extreme role media play in prioritization. I see it as a democratic problem, actually. A very obvious example is this immense discussion that has taken place about vaccinations a couple of years ago, how media has pushed the politic ahead and sets headlines like; now X number of people are going to die. Sometimes it is almost dishonest when media is just interested in making their own interpretation of what we say.

Difficulties to break old structures in care practise Even if the politicians emphasized that they had the interests of the citizens in focus, old structures in the healthcare system prevented them from accomplishing changes. They described that old structures, withheld by physicians as well as civil servants in the healthcare organization, were so well established that the needs of the patients were forgotten. One structure difficult to break was the accessibility to different therapies or treatment that was not was in favour of the patient. It was, for example, not possible to get a consulting before nine o’clock and after four o’clock in the afternoon and Friday afternoon was often closed for patient’ visits. The politicians meant that the healthcare organization ought to comply with the patients’ needs and not the opposite. Sometimes the patient unnecessary had to be on the sick-list only because of the institution’s opening time. The politicians expressed that it would be many benefits if the patients visits could be coordinated to one day instead of leaving blood test one week, being x-rayed next week and then meet the doctor three weeks later. They emphasized the importance of letting the patients’ needs accomplish the structure of the organization, but it was hard to change the way care was organized: One voter told me the following story from his cancer treatment; He asked for appointments early in the morning so he could go on working. The nurse told him “but you are entitled to be on the sick-list”. He told the nurse that he wanted to work, he, both physically and psychically, were better off then. “Maybe you should talk to a welfare officer” the nurse replied. The patient went angry, he did not want a bloody welfare officer and he just wanted appointments suiting his life.

The politicians expressed that some of the civil servants in healthcare organization did not respect the politicians’ capacity and did their best to withhold necessary information and thereby undermining their base for proper decision. Another old structure in healthcare, highlighted by the politicians, was that leaders often were physicians by profession. The politicians meant that a hospital today demands great responsibility and a strong leadership in order to keep the budget, which is not always for the hand. They questioned the old structures and meant that a physician is not necessary a good leader, just because he/she is a physician. Short budget and election periods limits the possibilities for long-term planning The politicians highlighted the consequences of short-term budget periods and that they had to show results within the election period, i.e. results that should be visible

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within their four-year commission as elected politicians. This became problematic as results from important preventive missions may lay many years ahead. Another obstacle for prioritizing preventive work was that if the budget was running for only one year. In one of the County Councils represented in this study they had changed into a three-year budget system, which was described to promote preventive means. Another long-term focus that the politicians wanted to prioritize was programmes for people being left outside society, but it was difficult to implement, not only because of the lack of short time results, but also because of difficulties to collaborate between different sectors, such as municipalities, other County Councils, employment offices and regional social insurance offices. It seemed easier to work with prevention in County Councils where there was less opposition between the political blocks and decisions were made in agreement. One aspect that concerned the politicians, and was related to preventive work, was the patients’ own responsibility for their health. They emphasized that society should and have to make demands on the citizens about, for example, smoking, drinking- and cost behaviour, physical exercise but did not know how: This is very tricky; I don’t think any political party would take part in an election saying; if you don’t stop smoking you have to take the last place in the queue for healthcare.

Having limited power to influence and control resource allocation One aspect possible to influence was, due to the politicians, the possibility to evaluate and follow up the commission the institutions were given and base the payment on the result. If the goals from the County Council were not reached, the expected amount of money was not paid to the institution. For example, if a clinic’s commission was to execute 500 hip joint operations annually and they only accomplished 400, a reduced amount of money was paid. If another clinic or hospital in the same County Council had produced more than expected, this clinic was paid instead. This has not been customary earlier. Also, some specialties in a large hospital might not have the “power factor” like, for example, oncology and brain surgery had and therefore have difficulties to be prioritized by the hospital leaders. One such example was psychiatry that for a long time had “lost” some of the money that was intended for them. One way for the politicians to manage to allocate money to these, not prioritized specialities, was to give them their own administration and thereby their own budget: We can make as many political decisions as you like, the physicians still do as they like. We have made a number of decisions which has not been obeyed and that is one of our problems […] one reason that psychiatry now has its own administration in our County Council is that we year from year earmarked money for psychiatry and still nothing happened. Now they have money of their own.

All politicians, except two, highlighted that the maximum patient cost within one year for medical care and medicine[1] under the health service was too low and ought to be increased. But since this was a question for the National Ministry of Health and Social Affairs to decide on, the County Councils politicians did not think it was “their pigeon”. They also agreed to how delicate this question was and used this question as an example of something that media would love to “put their teeth into”. The maximum patient cost within one year for medical care and medicine has been on the same level the last 15 year, when it started, and if the level of maximum cost could not be increased they thought that it, at least, should be tied to the living index. This question had,

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however, been discussed within the political block also on the County Council level and demands of a change of the condition have been made to the National Ministry of Health and Social Affairs: I can tell you a secret, in my party we pursued a policy that should increase “the maximum patient cost within one year for medical care” but we were told straight out by the greatest party in our block that the issue was not to be raised before the short coming election. Of course we are afraid of debates that depict us as don’t wanting poor people to get healthcare.

The politicians’ view of private health insurances was the subject that was most linked to which party they belonged. The more left wing supported politician, the more against private insurances. However, no politician was totally in favour but several could see both advantages and disadvantages with private health insurances. Some politicians thought that private health insurances would impoverish the public financed healthcare while other thought that it was up to the individual if they want to pay twice to get healthcare. The politicians, on the other hand, said that it might leave place for others in the queue and relieve the pressure in public healthcare, and that private hospitals could make Sweden competitive to other hospitals in Europe and thereby attract people from other countries to pay for healthcare in Sweden: I see it as a problem that about 5,00,000 [of 9 million] Swedish people have private health insurance today; it could be a symptom on defectiveness in public healthcare.

The high expense caused by medical drugs was an increasing problem that the politicians blame, for the most, the drug companies and found them to be irresponsible. They also thought that the physicians had a responsibility for the high costs of drugs, for example, their approach to prescribe expensive drugs even though the evidence for treating the cancer tumour was low. It seemed as it was easier to prescribe than not. The politicians thought that too many physicians were afraid of confronting patients that cannot be cured, and instead continued to treat diseases with expensive drugs even if they were no longer effective. Discussion The aim in this study was to identify and describe main obstacles for politicians when dealing with healthcare priority setting. All politicians in this study emphasized the importance of, and difficulties in mediating the political mission to the citizens not least because of the role media plays. This fact has been highlighted in earlier studies (Larsson, 2002; Van Aelst et al., 2008; Brants et al., 2010). Occasional irritation and contradictions between politicians and journalists seems to constantly occur, sometimes genuine but sometimes as “a part of the game” (Larsson, 2002). The relationship between media and politicians is, however, twofold: journalists need politicians’ information and politicians need journalists for reaching out to the public or voters (Van Aelst et al., 2008). In Sweden there is the Freedom of Information Law, which gives journalists access to documents and freedom to reach administrative premises. Journalists can obtain most of the material they want, by virtue of this law (Larsson, 2002). Larsåke Larsson, who himself is a journalist, interviewed 21 journalists and 19 politicians about their relationship and found, among other things, that norms were often set aside, especially among journalists, in order to achieve strategic goals (Larsson, 2002). Larsson meant that it is possible to imagine a journalist’s drive to find a scoop and his unwillingness to admit that an article is written for personal reasons. However, both sides kept various strategies hidden from each other, for example, the

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politicians admitted that they leak information, but officials denied it. Leaks are part of the normal interaction between media and politic, according to Larsson (2002). Brants et al. (2010) described that media has three roles; to inform, to provide a platform for dialog among citizens and to have a control function and are seen as a socially responsible roles to play in a democracy. As watchdogs, journalists perform the role of solicitor for the citizens. Citizens do not have time, tools or publicity opportunities to control those they elected to power. Brants et al. (2010) concluded that it takes two to tango but they are unsure of who here leads the dance and call it a spiral of cynicism. Thus it seems to be a democratic part of the game that media plays a watchdog’s role and that was, however, how the politicians in this study saw them. It could, however, be that important but unpleasant priority decisions do not take place because of the risk of being badly mediated and thereby run the risk of not be re-elected as politician, which in turn influence how effectively tax money are being used. The risk of not be re-elected for the next fourth-year period might also influenced the way, for example, how a health programme was planned. The politicians wanted result from a health programme within the election period and therefore seldom made programmes, for example, to increase children’s possibility to physical exercise as a prevented mean. The positive result from such a programme might perhaps be shown up to ten years later and then do not give today’s politicians any credit. However, the politicians thought that patients should take responsibility for their own health and that society should, and have to, make demand on the citizens about, for example, smoking, drinking- and cost behaviour, physical exercise. They just did not know how they should support this, as their view was that all people are entitled to be treated equally and have their need fulfilled. The goal for the Health and Medical Services Act is a good health, and care and service on equal terms for all citizens (SFS, 1982:763, 1982). Programmes, that support people to live healthy, prescribed and dictated by healthcare professionals, are thus something that ought to be decided on, independently of political majority or when the effects are shown. One difficulty to break old structures in care practise was that the healthcare organization did not seem to comply with the patients’ needs. The politicians meant that patients unnecessary had to be on the sick-list only because of the consulters’ opening time and the organization was not capable of coordinate different visits patients had to do in hospital. Bodenheimer et al. (2002) highlight the risk of losing the benefits of specialization if specialist providers and services do not properly communicate or combine their care for a patient. Ovretveit et al. (2010) found that structural and process changes could improve possible outcomes, but those coordinated actions at different levels and of different types were needed to achieve care coordination for patients. The authors emphasized that these things are difficult and take time to change, partly because of existing higher level financing and rules and system that underline the traditional separate facilities and service. The results also showed that the politicians had difficulty to steer the resources to the ones who needed it most as departments, such as oncology and brain surgery, had too much power and were prioritized by hospital leaders. This fact was also highlighted in a study Werntoft and Edberg (2009a, b) based on a questionnaire to 700 Swedish politicians and physicians where also the physicians pointed at the negative impact of the departmentalization of work, i.e. according some diseases a higher status, e.g. cardiac and orthopaedic surgeries were prioritized over treatment against rheumatoid arthritis or neurological disorders. However, it seems as if the politicians handle this problem by giving small and “less screaming” disciplines their own budget to handle and also to base

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the payment on the result the disciplines accomplished. Another tool, used by the politicians to allocate resources, was retaining money to the institutions if the goals from the County Council were not reached. One consequence of this, according to Zaremba (2013), can be that institutions, in the end of the year, reveal that too few commissions has been performed, leading to that all other activities are set aside in order to reach the commission concerning, for example, the number of hip joint surgeries. This in turn have major consequences for patients being on the waiting list for other surgeries. This illuminates some of the difficulties in priority setting, even if the intentions are good, the results are not always in the best interest of the citizens. Conclusion Aspects influencing politicians’ decision making were the risk of taking unpleasant decisions as they thereby run the risk of being scrutinized by media which in turn could affect their possibility to be re-elected. This might influence how effectively tax money is being used. Another aspect influencing their decision making was the length of the budget and election periods, which sometimes prevented them from taking long-term decisions as the effects from, for example, health promotion programmes were not shown in the short-term perspective. Thus these decisions ought to be taken in a broad political agreement independently of political majority. Methodological considerations The findings of this study have to be valued in the light of methodological aspects. One vital aspect in qualitative research is the quality of the data collected. One threat to this could be the participants’ skills and experience in interview situations, giving general answers instead of arguments on a deeper level. However, promise of confidentiality in the study and the serious and thoughtful way the politicians argued in the interviews, decreased this threat. The interviews contained comprehensive narratives based on the politicians’ unique perspective. Further, the sampling technique was structured to capture complexity and to maximize diversity of views and experiences concerning the topic (Hsieh and Shannon, 2005). The participants thus represented a variation in age, gender, experience and political opinions. In order to strengthen the trustworthiness, both authors took part in the analysis, first independently and the together. Also quotes from the participants are presented to validate the findings. Note 1. Maximum per capita cost within one year for medical care and medicine under the health service is a social benefit that protects all Swedish citizens from excessive costs for healthcare. Authors comment: the maximum cost was changed after the data collection of this study, in line with the views from the participants (changed in January 2012).

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Werntoft, E., Hallberg, I.R., Elmståhl, S. and Edberg, A.-K. (2005), “Older people’s views of priorities in health care”, Aging. Clinical and Experimental Research, Vol. 17 No. 5, pp. 402-411. Zaremba, M. (2013), The Patient Price – A Report about the Swedish Health Care and Market (Patientens pris – ett reportage om den svenska sjukvården och marknaden), Weyler, Stockholm. Further reading Graneheim, U.H. and Lundman, B. (2004), “Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness”, Nurse Education Today, Vol. 24 No. 4, pp. 105-112. Mamhidir, A.G., Kihlgren, M. and Sorlie, V. (2007), “Ethical challenges related to elder care. High level decision-makers’ experiences”, BMC Med Ethics, Vol. 8 Nos 3-15, p. 3. Werntoft, E. (2006), Older people’s views of prioritization and resource allocation in health care, PhD thesis, Lund University, Lund.

Corresponding author Dr Elisabet Werntoft can be contacted at: [email protected]

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Swedish politicians' view of obstacles when dealing with priority settings in health care.

The purpose of this paper is to identify and describe main obstacles for politicians when dealing with healthcare priority setting...
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