Degree project, 30 ECTS [6 June 2020]
The Relationship between Paternalism and
Autonomy in Medicine from an Ethical and
Legal Viewpoint
Version 2
Author: Victoria Oscarsson, Bachelor of Medicine
Örebro University, Sweden
Supervisor: Rolf Ahlzén, Associate Professor
Örebro University, Sweden
Word count Abstract: [249] Manuscript: [6976]
Abstract
Introduction: The terms autonomy and paternalism can be conceptualized and analyzed from different perspectives. The most relevant for physicians in this study are the ethical and legal viewpoints. In order to conceptualize anything a definition to depart from is needed, in this case from Oxford’s dictionaries. The importance to reflect on ethical and legal matters as a physician is due to the power over the patient one has, and it must be respected and grounded in a motivated ethical principle, since all our actions arise from ethics, consciously and subconsciously.
Aim: The aim is to analyze and discuss the relationship between paternalism and autonomy from a medical ethical perspective, in relevant Swedish laws and with regards to the ethical principles.
Methods: This is a qualitative study on hermeneutic ground that used two different databases and libraries and sorted material according to relevance. Inevitably this leads to a bias due to the author’s previous knowledge and selected sources.
Results, Discussion and Conclusion: Physicians tend to prioritize ethical arguments depending on the situation. Autonomy is one of the four ethical principles, and this is not always the most prioritized, but beneficence may be seen as a stronger argument for action. Also, there are more regulations to secure the patient’s autonomy than the physician’s paternalism, leading to only indirect regulations towards paternalism. The conceptualization of paternalism and autonomy can be seen in many different ways, and are not always
opposites as it can initially seem, but in some scenarios aline.
Abbreviations and Translations
There are official translations only for PA and LH of these, the others I have attempted to translate.
Smittskyddslagen Contagious Disease Law
Tandvårdlagen Dentalcare Act
Egenvård Self care
Patientlag Patient Act PA
Patientdatalagen Patient Data Law
Patientsäkerhetslagen Patient Security Law
Hälso- och sjukvårdslagen Law of Healthcare LH
Inspektionen för vård och omsorg Swedish Health and Social Care- Inspectorate
1.Introduction
Autonomy is often used as an interchangeable expression for freedom, although these terms are not equal in definition. Freedom means that no one is restraining the individual, and autonomy means that the individual is free to make choices [1, 2]. Autonomy is therefore an active choice that the individual may or may not want to bear. These terms can be viewed upon from different perspectives; ethical, legal, political, individual etc, but they all are in some ways intertwined. Sweden has several healthcare laws, where one of the most discussed and among the newest law is the Patient Act (PA) where majority of chapters are focused on the patient’s right to influence and receive healthcare [3].
Continuing firstly with dilemmas of autonomy, the obvious challenge is the impossibility to treat individuals equally due to different presumptions of each person's background, a person may not understand information, be able to process it, make their own decisions, amongst other difficulties [4]. The relationship between autonomy and the law regarding healthcare can be interpreted as simple when reading it, but also difficult when discussing the concepts. The purpose of healthcare is to treat, and that the patient is pleased with the treatment [3, 5]. Another aspect lifted by sociologist Simon Clarke is the endorsement constraint thesis, stating that each individual’s wellbeing is dependent on their mental belief - and it is implied in both negative and positive directions [2].
Medicine is a personalized science since clinical outcomes are many times based on an individual’s experience, preferences and the patient’s response to the intervention [6]. Hence depending on which staff the patient encounters there may be a difference in treatment, and also in ethical decision making [7]. Healthcare staff have a responsibility to give a
scientifically proven care to each patient and simultaneously give a patient autonomy and to not lawfully discriminate a patient [3, 5, 8]. These are not simple tasks, but yet required to be fulfilled.
To manage any dilemma, one must look to the ethics surrounding it. In other words, two different ethical dilemmas that may occur in various situations where ethical principles can be applied. The basic ethical principles that are applicable to medical ethics are defined by Beauchamp and Childress as autonomy, beneficence, nonmaleficence and justice [9].
ethical principles, leaving them to choose which one that ranks the highest according to their own moral [10]. In the same study discussions on how to learn clinical ethics was lifted with the staff, and they believed that ethics cannot only be taught but must be learned through experience [10]. However, how many times can one handle a situation in less ethical ways to learn a better way, and what is the better way?
According to the Swedish Health and Social Care Inspectorate the number of complaints towards healthcare from patients are steadily increasing. Recent Swedish reports show that of the different types of complaints towards all medical care, the largest number is related to medical treatments and care itself [11]. According to a study on patients with lower back pain the conclusion is drawn that patients want to be an active part of their treatment via shared-decision making, receive information, good communication, cause and legitimization of symptoms, and holistic individualized care at a low cost, personal effort and short waiting times combined with high continuity [12]. Some studies indicates what a patient wants from a healthcare provider, and all of these demands are practically never fulfilled, and there is a possibility that they never can be fulfilled neither [11–14]. Maybe the stretches of autonomy for the patient have a limit - the patient cannot demand endless of opiates for a chronic back pain, the only treatment option may be physiotherapy. Does that mean that the autonomy is compromised? When considering Oxford’s definition of autonomy, one would say that the patient never will fulfill the definition in healthcare, since the patient can never decide on their own a specific treatment. The patient however can say no to treatment and make individual plans with the medical provider within certain limits. Hence patients have autonomy that is within certain limits according to the reasoning above. This can be
interpreted in different ways and from different viewpoints, and in this paper the focus is on autonomy and paternalism through Swedish laws and medical ethical principles.
The year 2015 the PA was established to guarantee a safer and more patient-oriented healthcare [3]. Keywords in the PA are availability, participation, choices of executors of care, treatment and aid. Previous to the PA is the Law of Healthcare (LH) established in 1982 and revised numerous times, latest 2017 and is still current today [15]. The purpose of the PA was to make several other laws regarding patient autonomy more accessible through one law instead of many where none has a specific focus on the topic [16]. A noticeable difference between LH and PA is the amount of times the term “patient” is used, where in LH it is almost half as many compared to PA [3, 5].
In other perspectives the PA can be interpreted as more individualistic compared to LH, since the focus is on the individual compared to the group or society as a whole. To cite the first sentence in PA “This law aims to within health and healthcare services strengthen and clarify the patient’s position and to further the patient’s integrity, autonomy and participation” (my translation) [3]. This signals that the patient is in focus and to always take into consideration their wishes. The first sentence in LH is “ With health and healthcare intends this law actions that prevents medical harm, investigate and treat diseases and injuries” (my translation) [5]. LH was established about 35 years previous to PA, therefore the introduction of a new law may be a result of a shift of reasoning within the Swedish society from a collective survival view to a more individualistic, or as a populistic incentive for example political votes, or maybe due to enough accidents or mistreatment within healthcare that there is a need to clarify for the population what the law says regarding individuals receiving healthcare [17, 18].
Other laws that are relevant in relation to patient autonomy and that the PA is founded on (except for LH) is the Dentalcare law, the Contagious disease law, the Patient Data law and the Patient Security law [15]. Another common ground within these laws is that the
responsibility for healthcare is placed upon the Regions responsible for healthcare – in other words the authorities themselves – and not upon the patient [15]. There are other laws concerning compassion in psychiatric care, children and adolescence care and forensic care that will not be discussed in this paper.
The four ethical principles that are used in the paper are proposed by Thomas Beauchamp and James Childress in 1985 [19]. Previous to this there were several research experiments
worldwide that aimed to reach medical knowledge but with no regard for the patients themselves. These four principles gave rise to a new way of handling medical situations. In the preface to their sixth edition of Biomedical principles they write that the principles themselves have not changed, but discussed further and from more perspectives with new input received, formal as well as informal [9].
2.Aim and Research Questions
The aim was to analyze and discuss the relationship between paternalism and autonomy from a medical ethical perspective, in the relevant Swedish laws and in regard to the relevant ethical principles. The research questions to be answered are:
• How are the concepts paternalism and autonomy defined and understood?
• Which laws are relevant for the patient and healthcare professional regarding the patient’s autonomy?
• Which are the ethical challenges in relation to patient autonomy and physician paternalism?
3.Ethical Considerations
This ethical study contains no sensitive or personal data and therefore no ethical consideration is relevant. The whole work aims to discuss ethics and therefore no conflicts arise.
4.Material and Method
This is a qualitative essay on hermeneutic ground where the motive is to reach further understanding of different articles, laws, and relevant literature in order to interpret the same concepts once again with a new knowledge [20]. The purpose is to gain more awareness of the meaning of the terms autonomy, paternalism, ethical principles and the Swedish laws. Therefore it is not a strict systematic literature analysis, but relevant literature for the purpose and research questions is used and accounted for. The research is biased towards the author’s previous knowledge and literature chosen was selected based on relevance. The selected sources’ references were also used as a base for more relevant articles and information.
It is also important to always have two sides of analysis, and not only analyze from one perspective. The author’s belief is that this is naturally accomplished through discussion of autonomy and paternalism as opposites, and through the analysis of ethical principles’ pros and cons. Hence the inquiry is never only for or against, but always viewed from both perspectives [21].
A brief disclosure about the essay is that all of the Swedish laws and reports are written in Swedish, and the author of the paper translated relevant parts of these texts for research benefit when they are discussed. Under 4.2.6 are the correct Swedish titles.
Below is a flow chart that shows the searches made to find sources of information. The two databases used were Pubmed and Google, since Pubmed has plenty of medical research including ethics and Google mainly to navigate to certain websites and find general relevant information. I sorted the relevant titles and abstract/other text involved. In Pubmed the search setting “best match” and “advanced search” were used, as well as only English and/or
Swedish articles. During the Pubmed searches I only read and sorted through the first 100 articles. Wide google terms was used to navigate to the right uniform resource locator for certain websites with information, and on the website itself I used their archives to find statistics and discussions regarding ethics. Books in two different libraries’ have also been used, and the books were found after searching for relevant content in the libraries database. There were two separate searches with the words: medical ethics and Swedish healthcare laws. The libraries used were Örebro University and Mittuniversitetet campus Sundsvall.
Google 4 ethical principles of medicine Tom Beauchamp and James Childress
Riksdagen lagar Läkartidningen Oxford
dictionaries Politik och paternalism 59 700 000 hits 93 200 000 hits 149 000 hits 1 560 000 hits 452 000 hits 117 000 hits
What are the principles of bimedical ethics [26] Stanford Encyclopedia of Philosophy [33] Oxford learners dictionairies, oxford university press [1, 22] Big thinkers – Thomas Beauchamp and James Childress [19] Patientlagen [3] Från läkarpaternalism till patientautonomi by Lynöe et al [24] Bakslag för patientlage n by Ström [31] Hälso- och sjukvårdslagen [5] Smittskyddslag [27]
Motion: donationsregistret och hälso- och sjukvårdslagen by A Steele[42] Diskrimineringslag [8] + + + + Brännmark J. Ohälsosamman vanor och folkhäslopolitisk paternalism. Thales 2015; 12. [32] + Figure 1: Google searches with the numer of hits för each search. Mainly Google was used to navigate to certain websites. Only the first three google pages was visited in search for information.
Autonomy AND physician AND patient preference
Pubmed
Paternalism AND Positive AND Negative
31 hits Carter SM, Entwistle VA, Little M. Relational conceptions of paternalism: a way to rebut nanny-state accusations and evaluate public health interventions. [35] Autonomy AND Communication 6210 hits Vinicius C Oliveira et al. Communication that values patient autonomy is associated with satisfaction with care: a systematic review. [6] Berger ZD, Boss EF, Beach MC. Communication behaviors and patient autonomy in hospital care: A qualitative study. [29]
+
Reference
Calkins DR, Davis RB, Reiley P, et al. Patient-Physician Communication at Hospital Discharge and Patients’ Understanding of the Postdischarge Treatment Plan [28]
Ethical principles AND Autonomy 18514 hits
Baumann A, Audibert G, Guibet Lafaye C, et al. Elective non-therapeutic intensive care and the four principles of medical ethics. [41] Gillon R. Medical ethics: four principles plus attention to scope. [43] + Autonomy AND physician interference 63 hits Joseph T. F. Roberts. Autonomy, Competence and Non-interference. [23] Reference Dworkin G. Paternalism. In: Zalta EN (ed) The Stanford
Encyclopedia of Philosophy. [34]
157 hits
Yin-Yang Lee et al. Do patient autonomy preferences matter? Linking patient-centered care to patient-physician realtionships and helath outcomes. [4]. Berit Bringedal et al. Between professional values, social regulations and patient preferences: medical doctors’ perceptions of ethical dilemmas [7] + Percieved need AND decision making AND communication 789 hits
Louisa Chou, Tom A. Ranger, Waruna Peiris, et al. Patients’ percieves needs of health care providers for low back pain management: a systematic scoping review. [12]
Vårdanalys [13, 14] Inspektionen för vård och omsorg [11]
Forskningsmetodik – om kvalitativa och kvantitativa metoder by Holme et al [21]
Man Told to Explain Why He Can’t Give Marrow to Ill Cousin. The New York Times [44]
Principles of biomedical ethics by Beauchamp T and Childress J [9]
Jonsson F. ‘Man får väl lite tjurig och tyckte att det var dåligt, men det var ju bara att acceptera’ - en kvalitativ studie om individers upplevelser
av en paternalistisk intervention. [38]
Patientens integritet, självbestämmande och delaktighet - En historisk tillbakablick [30]
Figure 3: Advised litterature: Sources that were recommended by my supervisor, collegues and friends. Arrows show sources used that were refered to in the advised litterature.
World value survey database [18]
Foundations of Freedom by Simon R. Clarke [2] Lagstiftning – patientens rättsliga ställning. Vårdhandboken [15]
Grunderna för ett vetenskapligt förhållningssätt inom medicinen by Nyrén et al [20]
Bremberg S, Nilstun T, Kovac V, et al. GPs facing reluctant and demanding patients: analysing ethical justifications. [39]
Etik och screening by H Walfridsson [36]
Figure 2: Pubmed searches and number of hits. Only the first 100 searches were read and selected depending on relevence using the presetting Best Match and English and Swedish text. The third arrows in some of the flows demonstrate references used from the initially found research.
4.2 Concepts, Abbreviations and Translations
4.2.1 Autonomy
Autonomy is defined according to Oxford dictionaries as “the ability to act and make decisions without being controlled by anyone else” [22]. This can be interpreted different depending on the observed viewpoint or ethical position: the individual, or society and liberal bioethics, or clinical ethics are the relevant viewpoints to this paper. Oxford dictionaries definition was chosen to originate from since it can be interpreted as a baseline for definitions in general and thereafter analyzed from different ethical perspectives. Also, a strive to use the same source for both terms autonomy and paternalism which is defined below (4.2.2) to standardize these two terms towards each other when discussing their relationship. Definitions for autonomy can vary depending on the source, and therefore also take on different meanings. Hence a simplified version of the definition proposed by a non-ethical dictionary is a good baseline to thereafter deepen the analysis. The paper is also based on an assumption of adult individuals capable of verbal communication.
4.2.2 Paternalism
Paternalism is considered to be on the other side of a continuous line from autonomy [23] and according to Oxford dictionaries “the system in which a government or an employer protects the people who are governed or employed by providing them with what they need, but does not give them any responsibility or freedom of choice” [1]. The term pater comes from Latin and means “father” as a symbol of the overhead and all-knowing [24]. Hence the patient was to obey the doctor in order to become well. This term can have a positive connotation or a negative denotation depending on situation and the patient’s preference [24].
4.2.3 The Patient Act
The year 2015 a new law that coordinates the rights and autonomy of individual patients was established in Sweden to clarify the position of the patient in relation to medical care givers [16]. The law gives the patient for instance a guaranteed time for interactions with primary care, hospital care and right to medical care outside the patient’s listed region if the region cannot fulfill the need of one individual [3]. It also strengthens the patient's ability to decide
upon given care, and removes individual responsibility from the patient towards the Swedish authorities [3]. The paragraphs deal with patient’s right in these regards: availability,
information, consent, participation, permanent care contact and individual planning, new medical assessment, choice of medical performer, personal data and certificates, viewpoints, complaints and patient safety [3].
4.2.4 The Law of Healthcare
The Law of Healthcare was originally formed 1982 and is a goal-oriented stipulation with comprehensive goals, guidelines and responsibilities for each sector within healthcare. In 2017 the law was reconstructed to become more accessible and understandable. There were some changes to the laws, but not in a drastic way [25]. Mainly the law places responsibilities upon healthcare as an authority to distribute resources as needed and with respect for the individuals [5, 25].
4.2.5 Ethical principles
There are four ethical principles regarding medical care according to Beauchamp and Childress version: autonomy, beneficence, nonmaleficence and justice [9]. Each principle entail responsibility for the care provider towards the patient, always with the patients’ interest in mind, with the exception for nonmaleficence. Nonmaleficence means “do not harm” and takes in a society as a whole [26]. For instance, if a person has a contagious disease, he or she may have to be isolated against their will for treatment to avoid spreading a hazard [27]. Hence the principle of beneficence which is defined as “do good” towards the patient can be seen on a larger scale and involve a whole the society, taking a paternalistic role. The other three principles are autonomy, beneficence and justice. Autonomy is defined under 1.1.1 and further explored in the results. Beneficence refers to positive actions against others, compared to nonmaleficence that only refers to not actively harming others. Justice is the last principle and can be seen in various forms and definitions. In general, it is defined as fairness, desert and entitlement. However, it is further defined by various of principles itself into formal principles of justice and material principles of justice, where formal justice is how people within a group and groups of people treat each other - boiling down to equal treatment or not, and material justice is what substantive properties are distributed between people [9].
5.Results
5.1 Autonomy
5.1.1 Challenges and Conceptualizations
According to the definition of autonomy the person must fully understand in order to make valid decisions, as well as everyone around the person must not intervene with the choice. This is confirmed by Beauchamp and Childress that means that autonomy includes liberty and agency in order to be autonomous, and states that autonomy is “self-rule that is free from both controlling interference by others and from certain limitations such as inadequate
understanding that prevents meaningful choice” [9]. The first limitation is within the person itself and can be classified as knowledge, and the second is the limitations others put onto the patient and can be interpreted as communication. Limitations such as bodily restrictions due to psychiatric or physical impairments are not considered in this paper, but are also important limitations to patients’ autonomy.
Communication between hospital staff and patients tends to be misinterpreted on both sides, where the physician believes that the patients understand and that enough time was spent medically informing and discussing, while the patients sometimes feel the opposite [28]. When the patient does not understand the medical issue themselves nor receive
understandable medical knowledge, it creates an unconscious or conscious limit. The patient may not themselves know the course of medical action and therefore has an unconscious limitation, or they are fully aware of their lack of knowledge and have a conscious limitation. There may also be a conflict of interest if the patients actively insists on their opinion and may somehow contradict the medical opinion [29]. Due to these potential
miscommunications the PA specifically states that information should be given also in writing when required [3]. However, the issue remains that if the information is given in writing but is not understood, it is by definition a barrier between the patient and the caregiver. The largest limitation of autonomy is therefore knowledge.
5.1.2 Laws Regulating Patient Autonomy
The PA and LH was implemented historically due to a rising criticism of paternalistic medical authority without patient involvement [30]. Patient migration between different regions in
Sweden leads to medical demands for non-listed patients in that region, and internet access and media puts greater pressure on medical services [17, 30]. The purpose of the PA is to strengthen the individual patient’s autonomy and integrity. However, according to follow-up reports it has not fulfilled its purpose [13, 14]. On the contrary, there is no significant
difference between 2014 and 2017 regarding the patient’s position in healthcare in seven of the headlines of the PA and there is a deterioration in the remaining three topics [14]. The reason for the weakening of the patients’ positions may be a lack of organizational conditions, knowledge of the law, and an uninviting culture towards the patient that lives on within healthcare itself and absence of a better system for reevaluation and follow-up from the care provider to carry out all the requirements according to the law [31]. Therefore it may not be due to a difference in the actual care, but the authorities are now evaluating more hence receiving larger amounts of information from the patients.
This opens a dilemma for the individual patient: patients have certain rights regarding their autonomy according to the PA but the medical authorities are not aware of the continuous changes in the law, yet they are responsible for distributing information and knowing all changes in the laws regulating healthcare [5]. The patient's autonomy is restricted per definition, since the ability to act and make decisions is impaired. This may also be one of many reasons for the continuous increase in complaints toward the Swedish Health and Social Care Inspectorate since the implementation of the PA [11, 14].
5.2 Paternalism
5.2.1 Challenges and Conceptualization
Paternalism is a concept that can be applied to an individual as well as a society. In medicine, the health of an individual is often intertwined with the population as a whole, where a physically healthy population that have an active lifestyle in general leads to bodily healthy individuals. Paternalistic interventions on an individual level may in many cases seem harsh, but from a social perspective and applicable to a larger group many individuals see this as a positive [32]. To better understand the challenges of paternalism the term and definition need to be further explored. The extended definitions that I have interpreted from Stanford
different types of published research concerning ethics and paternalism [33], and can be explained the following way:
1. Hard versus soft paternalism: paternalism is justified to inform individuals about a situation where the individual themselves can make a decision after understanding the information (soft paternalism). If the information is not understood the paternalistic can stop an individual from making a harmful decision (hard paternalism).
2. Narrow versus broad: narrow is only concerned with paternalistic actions on a state-level such as crime, broad paternalism is involved in every aspect of life.
3. Weak versus strong: involves enforcement of a physically protective stance in the already established agenda of the person, whether the agenda is harmful or not. Weak paternalism is when enforcing safety to the already safe agenda, while strong
paternalism is to enforce safety to a harmful agenda and may therefore not affect the actual outcome in entirety. Weak paternalism is in medical terms when a physician is acting without consent due to incapacity to give consent. Strong paternalism is when a physician is acting against a patient’s will.
4. Pure versus impure: Pure is when doing actions in order to protect a group from doing harm to themselves, while impure is to protect a small group from the harm of a larger group.
5. Moral versus welfare: Moral is when someone is protecting others moral, or in some definitions psychological well-being, although their physical state is non-violated, while welfare is protecting the physical well-being [34].
Hence from these definitions there are different aspects of paternalism: individual information, on the level of society and law, concerning protection and groups, and/or individuals from physical and psychological harm, and sometimes allowing the individuals choice but only after excluding certain choices, making the availability limited. Whether paternalism is good or not may be determined using these factors in context: on whom the paternalism exercised, the intention and the consequence of the paternalistic action from one person or the authorities to the individual or group.
Since autonomy is the term that is used as something positive in law regulation and media to receive the trust of individual persons that interact with healthcare, paternalism tends to be interpreted as a negative. The reason for the negative interpretation may be the restriction of consent. However, paternalism is not defined as absence of consent, it merely means that the
individual receives what he/she needs without his/her freedom of choice nor responsibility [35]. Practically this means when a person with acute sepsis comes to the emergency department they automatically give consent to treatment. Then the healthcare decides paternalistically which antibiotic the patient receives and which department the continuous care will be given at. The patient chose to receive care from the beginning and hence consented to paternalistic treatment. This is an example of positive paternalistic duties.
The limitations of paternalism can be considered to be defined by the individual patients themselves, since they can give all power of decision to the most educated in the field, the physician, and hence consent to lose autonomy. Each person, patient as physician, is different, the limitations may be interpreted differently depending on the situation. For example, the patient above with sepsis consented to be treated for sepsis with piperacillin/tazobactam antibiotics, but the patient may want cefotaxime instead in order to spare more bacterial diversity in the colon. The physician can choose the narrower antibiotic requested, since this contributes to a better outcome for the patient given that it covers the unknown bacterial agent. This is an example of when autonomy and paternalism both is exercised and can coexists. Hence autonomy and paternalism are not always a direct opposite-relationship with each other, but rather a flexible relationship.
A limitation to paternalism is when the patient chooses to decline the care of a physician or opportunity for a treatment or potential treatment. Screening in healthcare is such an example, which is a systematical approach towards a certain group in order to prevent disease later on. For example, men 65 years or older are offered to regularly be screened for abdominal aortic aneurysms. This could be considered a soft, narrow and welfare-oriented paternalistic act from the authorities to encourage the screening to avoid death by ruptured aneurysm [36]. A majority of those who are offered this screening accept, but dilemma occurs when someone choose to not screen. This can be seen as autonomous choice by the individual to use the right to decline. However, from a patients’ perspective the consequence of declining a medical screening can lead to guilt and a need to justify the decision, since the patient believes that the offer is made out of a paternalistic caring perspective and may interpreted as rude to decline.
The discussed laws are the Patient Act and Law Healthcare. These laws are focused on the patient as an individual, and not only a patient. The historical background for this is based on patients who collectively worked for their rights to decide their own path in health services [30].
There are underlying agreements and expectations between a patient and a caregiver: for example, there are guidelines regulating elective surgeries where there is a demand on the patient to avoid smoking for at least seven weeks before the surgery can be done. Hence it is up to the patient to follow the established rule in order to receive elective healthcare [37]. This illustrates a difference in the paragraphs 5 and 4 in the PA, where it mentions consent versus consultation, where consent means that the patient approves of the medical
engagements and consultation that the patient can influence it [37]. Also, most physicians have the populations’ and the individual’s medical interests in mind and may therefore not concern themselves with the patient's wishes. If a patient therefore decides to avoid a certain treatment and will become more medically ill due to the decision, the physician have no right to interfere with the decision [37]. However, this does not mean that the patient can decide what treatment he/she would like, only to what extent he/she wants to subject themselves to it.
The difference between acting paternalistically and encouraging a patient to take
responsibility - which may be argued to enhance their autonomy - is not always clear. In chapter 5 paragraph 2 of the PA patient participation is noted. In common terms this is called “egenvård” or “self-care” and implies that a patient can in some degree manage their own welfare after instructions from a health worker [3]. The healthcare’s view on this is to relieve the health organization from what they consider to be unnecessary work, and to strengthen the patients’ involvement in their health. However, depending on what procedure that is expected it may not follow the LH which states that all procedures are to be in line with “knowledge and proven experience” (my translation) [5].
To some degree it can be argued that if responsibility is given to a person from another it is a paternalistic act from the “giver” towards the “receiver” even if it makes the receiver more autonomous. The effect of giving a patient responsibility may be interpreted as a task that comes with responsibility and hence the patient must take measures against the illness. If the patient must do something it can be interpreted as a limitation to the patient's own will and
therefore limit the autonomy [38]. The difference experienced in these laws are that LH is more focused on utilitarian ethics – the greater good for the many and refers to the population on a group level. The PA focuses on the individual’s rights within healthcare. To summarize the laws regulating paternalistic acts are that they are not as clearly stated as the laws
regulating autonomy. In one sense paternalistic regulations can only be interpreted after understanding the regulations of autonomy.
5.3 Ethical Principles and Challenges
As noticed with laws regarding healthcare it is often easier to establish a fundamental rule, but harder to follow it. The same may be in ethics where ethical principles are attractive in theory but hard to implement practically [9]. Since there are in total four principles, most physicians prioritize them according to the context. For example, in a study with general practitioners in Sweden and Slovenia the conclusion is that the GPs prioritize beneficence and justice higher than the patient’s autonomy [39] In a study among anesthesiologists, surgeons and nurses the physicians reasoned similarly as the GPs. [40] The view of the four principles continues to least prioritize patient’s autonomy, and these physicians rather focus on beneficence than autonomy [41]. Therefore I have read and discussed each principle with the exception of autonomy, since it is discussed under 4.1.
5.3.1 Prioritizing ethical principles
It is difficult to prioritize the principles when considering the principle’s extreme edge. In studies this is examined through choices of action when given a scenario. The scenario itself in these types of studies may be angled towards certain choices, and usually the choices are either or – the person making the choice in the test cannot often discuss and come up with their own unique way. However, in the study mentioned above with GP practitioners, most chose beneficence as the most important principle, but a few argued that they prioritize autonomy firstly, and motivated their choice by improved patient doctor relationship and therefore a better outcome with the treatments [39]. Another dilemma with these studies is that when ranking anything relative to another, it automatically means that the principles cannot coordinate and must stand separated from each other. In the study above beneficence is separated from autonomy. However, beneficence - do good - is not an opposite to
studies made can be deceivable, since there is no open communication. If a discussion with a patient is executed there may be a consistency between the patient's wishes and beneficence. On the other hand only the doctor may perceive the situation as mutual understanding, since we know that the doctor and patient do not always perceive and understand the same information, or spend the amount of time needed for full disclosure [28].
Communication between a physician and a patient is necessary, but what is communicated is what affects the patients’ emotions, and may or may not infringe upon their autonomy, and the other principles may be misinterpreted between the patient and the physician during their communication. An earlier study done on Swedish GPs, oncologists and general public shows that GPs are reluctant to bring up smoking again if a patient has communicated a will to not stop smoking. However, twice as many in the general public favored to bring up the smoking issue once again regardless, compared to what the GPs answered that they would [39]. This shows that patients to some degree is not opposed to a hard and narrow paternalistic
relationship in certain aspects of their health. Hence prima facie, which principle that is seen important depends on the situation and who the situation originates from, and can be
overruled when there are other factors to consider.
5.3.2 Justice
Justice - or fairness, desert and entitlement [9] - plays a role when physicians must treat more than one patient simultaneously and therefore decide which patient to prioritize, sometimes leading to the negligence of another patient in the authors experience. To exemplify when physicians act against an ethical principle for a patient in order to receive beneficence for another is the proposition to change the law regarding potential organ donors. The proposal considers organ preserving treatment of potential donors with presumed consent where treatment is not motivated by the donating patient, hence in some ways violating autonomy [42]. Utilitarian justice promotes this action as an obligation to maximize welfare, however if followed to the extreme promotes the negligence of the weakest to use resources where they can do the most good for a longer time hence maximizing positive outcome, rather than promote the weak in society, therefore questioning the whole concept of LH and PA [3, 5, 9].
5.3.3 Nonmaleficence and Beneficence
The principles refer to an action towards a person, and is separated into actively doing good (beneficence) and actively refraining from harm (nonmaleficence). According to the
philosopher William Frankena this is one principle that can be divided into four different prioritized statements: 1. To not inflict evil/harm, 2. To prevent evil/harm, 3. to remove evil/harm, 4. To do or promote good. [9] According to R. Gillon, in healthcare, it is
impossible to attempt to do good if not risking doing harm, and these two principles should therefore be considered in practice as one but in theory as two [43]. To connect these principles to the current Swedish debate regarding organ donation and transplantation of patients who are considered to be brain dead, raises a dilemma between beneficence and nonmaleficence. In the current LH it states that only healthcare that benefits the patient should be given, and immediately terminate when there no longer is a medical benefit for the
receiving patient [5, 42]. However, if a patient that is brain dead and has functioning organs, should life support of that patient terminate due to no medical benefit for that specific patient, when the patient in turn can be of benefit to others? A proposed law that changes LH to be of greater good for greater number of people is under discussion, and refers to the principle of beneficence when examining the patient who will receive organs using an consent in advance until proven that the consent was not given [42]. The person who will donate organs is
motivated ethically by moral virtue, in other words the act is morally valuable, and can in some sense be seen as an obligation in order not to harm – if the patient in need of an organ do not receive it there will be a harmful consequence that could have been avoided.
A similar case occurred in 1978 America where a man with aplastic anemia sued his cousin for not donating compatible bone marrow to increase his chances of one-year survival from 25 to 50%, referring to the principle of nonmaleficence [44]. The court judged the cousin as not guilty, but as morally indefensible. The court meant that there is no obligation for individuals to actively do good even if the outcome is negative when applying a passive approach, referring to supererogatory duties [9]. The lawyer of the cousin meant that if a healthy person donates bone marrow, they put themselves under potential harm, which on its own is unethical if it is not under consent [44]. Hence these two ethical principles are related, but not the same.
6.Discussion
The relationship between paternalism and autonomy is highly dependent on the context and the persons’ preferences and can therefore be seen as a spectrum where the exact relationship is always shifting. Some patients want to give up their autonomy – and that does not
necessarily mean that it is removed, since it was an autonomous choice to remove it. One cannot say that paternalism or autonomy is superior, since both are dependent on each other in order to exist in healthcare.
As discussed under the headlines regarding laws there is a very clear view on what the patient has a right to, and what the purpose of the laws are. However, there is also research behind what the patient experiences and what their expectations are. Patients’ expectations vary depending on their background, and therefore their satisfaction is dependent on their personal experience. This is impossible to satisfy each time, and puts pressure on the physician to adapt the communication towards each patient, and adjust depending on the impression the physician receives. Since we know from the Swedish Health and Social Care Inspectorate and state research that some patients feel mistreated and not listened to, each individual physician should try to meet these criteria in order to please the majority of patients [11, 14]. The primary goal in healthcare is not to make all patients’ wishes satisfied, but to provide
healthcare, and an important part of health could be argued is to be listened to and understood. However, there will always be a difference between perception and reality for both physicians and patients. Also, the stipulated legal framework discussed in the essay can be seen as a consequence of the societal norm, and that the laws change accord to it. The opposite is when a law is established to set a certain standard for society and force it to obey the new laws. LH can be seen as a consequence of the norm; however, the PA can be seen as both a
consequence and a standard. On one hand it many of the laws were already established through other legal texts before the PA was implemented, however, the need to gather all the relevant legal texts concerning patient autonomy can be seen as a consequence of the
individualistic Swedish society, but also as an ideal that the patients want to receive when encountering healthcare and thereby forcing authorities to act different than previously.
A reflection in this research is that in the Swedish society, Europe and the generally throughout the western world there is a trend towards individualism and the principles of utilitarianism can be perceived as overshadowed by individualism [18]. Medical care is no
exception from this. However, when all the focus is on the patients and their rights, there is not much focus on the health workers’ rights at the workplace and what demands are put onto the staff. Since a speculation is that politicians in order to receive votes apply to the general public and the individualistic environments the demands on healthcare keep increasing, but the healthcare routines become slower due to the bureaucracy put in place for the very patients own safety. Bureaucracy function is to make an effective and safe healthcare for the patient and the staff, however, when it reaches a certain extent it works the opposite, making it difficult for each patient to receive the care needed since they do not know where to turn for help and therefore hinders patient autonomy. The staff faces on a daily basis patients that do not follow the norms of society in terms of politeness and respect, and put themselves in danger for various diseases and being mistreated mentally and physically, and it is not a guarantee that the laws of the work environment is followed. This is a dilemma for the society, since healthcare is a cornerstone of it. On one hand the staff is worn out and is mistreated in various of ways, and in the other there are more and new demands that are required to be met from the authorities.
Who is to be prioritized over who and to what degree is one question that needs to be answered, and should everybody within the complicated system of healthcare be treated equally? Hence is the PA applicable to everyone always or only in certain situations? And to what extent should healthcare staff such as physicians and nurses be exposed to misbehaving patients, even if these are sick? And should a patient with no suspected medical illness receive an MR scan?
After reading and pondering on the topics above, one understands that there are more ways to answer the research questions than what is written, since there are different ways to interpret ethics and its dilemmas, as well as terminology and purpose of laws, and the concepts autonomy and paternalism. The fundamental points and partial answers to the research questions are as following:
- It is impossible to completely avoid having a paternalistic healthcare. The medically educated are always going to be superior to the patient when placed in a medical setting, since they have the right to distribute the resources accordingly to their best judgements and possess more medical knowledge [5].
- The legal work around a patient and his/her autonomy is spread out over many different laws, but the PA summarizes the most important and relevant guidelines in one document. However, there is a very fine line between autonomy and the
beneficence that the laws act to support, and autonomy and beneficence together can in some ways be considered as patient empowerment since it strengthens the patient itself when these principles are in line with a medical recommendation [43]. This is a dilemma in itself, since all patients may not want or be capable of this type of
empowerment. Also, the staff within healthcare are not always aware of current laws or changes in the laws and can therefore not consider them in everyday practice, even if there is a duty to know the current legal regulations.
- The ethical challenge between patient autonomy and physician paternalism is the obvious difference in resource of knowledge and equipment, giving the patient an inferior position to the physician. Physicians themselves in analyzed studies believe that beneficence is the most important principle, followed by justice and thereafter autonomy. This can imply difficulties towards the individual patient’s autonomy, since the physicians have partially a collective approach, wanting to distribute
resources fairly according to the principle of justice, which is supported in LH but can be in some cases be interpreted as an interference with the PA. The ethical challenge affects both parts, the patient’s autonomy which can only be portrayed if it is actively exercised in relation to the physician, and the physician’s paternalism needs to guide the patient and still preserve the patient and their right to choose. This coexists in an equilibrium where both parts need to respect the boundaries in which they can act and still coexist, without pushing to harshly into each other’s rights and knowledge of decision making. Hence autonomy can be argued that it has not gone too far, as long as it is in equilibrium with paternalism.
In research there are always limitations. To my research I have used specific terms to find information simultaneously limits the results, and when reading a passage, it can lead to interest in another specific area, resulting in usage of new terms that matches my preferences. Therefore, the author herself is a limitation, but also a benefit for the research due to the personal view when analyzing the field. There is plenty of research done on medical ethics, however, most of the research encountered is scenario based and does not offer all the alternatives the physicians have in reality. A negligence towards the “grey” areas and
portraying the scenarios as more “either or” opposed to studies such as Pettersson et al when interviews were conducted, leading the staff to more freely discuss than to choose predestined answers as in Bremberg [10, 39]. Lastly, there are two large reports on the PA and its effects, but not much research on the ethics around it or the personal dilemmas staff have encountered after the implementation of the law.
7.Conclusion
As author I have learned that everything relative and bound to a context. This is a well-known conclusion from ancient philosophy that is still valid, and each individual involved in patient care should take time to reflect on matters discussed in this essay to evolve as a
compassionate and good healthcare worker. Also that physicians in cited studies prioritizes ethical principles according to the situation, but beneficence tends to consistently be highly prioritized [39, 40]. Currently there is no direct law that regulates paternalism in medicine, rather regulating the patients’ autonomy and therefore indirectly influencing paternalism [3, 5]. The patient will however always be inferior to the physician in healthcare due to the lack of medical knowledge and the physicians right to distribute resources, but this does not mean that the relationship is negative if it exists in an equilibrium [5].
8.Acknowledgements
I would like to thank my colleagues at the department of emergency medicine at Sundsvall-Härnösand’s hospital for great discussions at recommendation of literature, my supervisor Rolf Ahlzén for guidance in the hermeneutic process and always recommending new ways to find literature, and my partner Krister Borgvall for extensive discussions regarding ethics and philosophy that forced me to think in new patterns.
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Etisk reflektion
Hela denna uppsats är menad till att utforska och förstå etiska perspektiv och begrepp som autonomi och paternalism. Den etiska betydelsen är självklar eftersom hela yrkeslivet måste man i läkarrollen dagligen balansera mellan patientens autonomi, och den hierarkiska ordningen mellan en själv och patienter. Som läkare måste man också vara uppdaterad på relevanta lagar som man ska agera utefter, och därmed också kontinuerligt grubbla på vilka vardagliga ställningstaganden man står inför i mötet med en patient. Vilka längder kan vi gå för en individ, vilka gränser måste sättas och hur ska vi värna om patientens roll i deras egen behandling är inte alltid självklara saker som ska besvaras. Hur ska vi som läkare kunna agera på ett sätt som blir bäst för oss, för patienten och samhället, och har vi en skyldighet att alltid göra det vi anser är rätt? Dessa etiska resonemang och frågeställningar försöker jag analyserar och diskutera i min uppsats, och eftersom hela min uppsats behandlar etik så har jag däri tagit upp många etiska vinklar i sig.
Örebro, Sweden, 2020-05-10
Dear editor of the Journal of Medical Ethics
Enclosed in the letter you have recieved is a hermeneutik article written by myself, Victoria Oscarsson MB, titled ”The Relationship between Paternalism and Autonomy in Medicine from an Ethical and Legal Viewpoint” and the term legal is referring to Swedish laws and regulations. The hermeneutic process has led me to discuss and analyze following research questions:
- How are the concepts paternalism and autonomy defined and understood?
- Which laws and regulations are relevant for the patient and healthcare regarding to the patient’s autonomy?
- Which are the ethical challenges in relation to patient autonomy and physician paternalism?
I have after reasoning from Beuchamp and Childress four ethical principles and Oxford’s definitions of autonomy and paternalism come to understand that all understanding is rooted in context: hence the understanding of definitions and of challenges. Limitations play a vital part in especially autonomy, since each individual is limited in every relationship by the relationship itself – it is both an obstacle and an opportunity and is not strictly an opposite of paternalism as some authors may suggest. Relevant laws that may both enhance and also diminish patient autonomy and physician paternalism is the Patient Act introduced first 2015 and the Law of Healthcare established first in 1982.
This is an original text and discussion made by the author, and I hope to be published in jour paper.
Sincerely, Victoria Oscarsson, MD Faculty of Medicine Örebro University Örebro Sweden
Populärvetenskaplig sammanfattning
I min analys av koncepten paternalism och autonomi inom sjukvården utifrån de fyra etiska principerna enligt Childress och Beauchamp samt med stöd från patientlagen och Hälso- och sjukvårdslagen är dessa begrepp stora och invecklade i sig själva. Enligt Oxford är
definitionen för autonomi förmågan att agera och ta beslut utan att vara kontrollerad av någon annan, och för paternalism är det när ett överhuvud skyddar någon genom att förmedla det någon behöver utan att ta ge dem ansvar eller frihet. Begreppen kan tolkas som motsatta förhållanden, då en person (läkaren) kan ta beslut över en annan (patient) utan att ta hänsyn till patienten. Men är det alltid så enkelt?
Patienter som tar kontakt med svensk sjukvård ger automatiskt sitt samtycke till en viss form av fysiska och psykiska händelser enligt Patientlagen och Hälso- och sjukvårdslagen, genom att endast befinna sig i den statliga myndigheten som sjukvården är. Men är det etiskt korrekt att ge läkaren den makten, till exempel att fysiskt och psykiskt undersöka någon och göra en bedömning som kanske inte alltid går i linje med patientens önskan? Till viss del ja, då patienten alltid kan tacka nej till vidare åtgärder, men i oftast så gå läkarens paternalism och
patientens autonomi i linje med varandra. Till exempel så vill patienten genomgå ballongsprängning när de har en hjärtinfarkt, och det vill läkaren med.
Det viktigaste med denna analys är att som läkare måste man förstå vilken makt man sitter på, och respektera den och patienten i ens vardagliga arbete.
