Health Care Decision Making
This is an unofficial draft of the paper that was eventually accepted for publication. To access the published paper with the citation and page numbers, please send a request to author [email protected] or see below:
“Healthcare Decision Making: Cross-cultural Analysis of the Shift from the Autonomous to the Relational Self” The New Bioethics 20.2 (2014), 174-185. http://essential.metapress.com/content/t5n363u29567k101/
S. Joseph Tham and Marie Catherine Letendre[1]
Abstract
This paper addresses three factors that have contributed to shifts in decision making in healthcare. First, the notion of patient autonomy, which has changed due to the rise of patient-centered approaches in contemporary healthcare and the re-conceptualization of physician-patient relationship. Second, the understanding of patient autonomy has broadened to better engage patient participation. Third, the need to develop cross-cultural health care ethics. Our paper shows that the shift in the West from the individual to the relational self indicates an important change in the understanding of autonomy through the lens of culture. Practices that recognize the notion of the relational self allow for a more balanced view of autonomy and a richer conception of moral agency.
Keywords
autonomy, relational self, cross-cultural issues, healthcare decisions, informed consent, truth-telling, family.
Introduction
Important healthcare decisions in life focus our attention on questions like: Who should I consult? What shall I do? Since health is prized as a prime value, healthcare decision making necessarily involves consultation and a course of action that offers benefit and reduces harm. In the West, the physician has traditionally exercised the role of principal medical decision maker. Yet, before the significant medical and scientific advances of the twentieth century, clinical medicine had limited powers to change the health status of individuals with chronic or incurable conditions. Paradoxically, therefore, patient participation in medical decision making became a greater reality as medicine’s powers and scope expanded exponentially, with greater attention now focused on providing information and gaining the patient’s consent.
Re-Conceptualizing the Physician-Patient Relationship
We can attempt only a very brief historical summary of the events that led to greater patient autonomy here. Various authors have already written differing accounts of how this phenomenon developed as medical ethics took on a new scrutiny, and the multidisciplinary field termed bioethics emerged to deal with moral problems linked to implementing medical, biological, and technological advances. (Rothman 1991, Sgreccia 2004, Jonsen 1998, Fox & Swazey, 2008)
The decisive event following World War II was the Nuremberg trial of 23 Nazi physicians who had conducted experiments on non-consenting prisoners. The resulting Nuremburg Code of 1947 required medical professionals to gain voluntary consent from persons involved in scientific research as well as to adequately inform them of risks and harms.
In the 1950’s before informed consent became known, Szasz and Hollender proposed three models for a more mobile physician–patient relationship that included a range of possibilities to fit the clinical situation and included participation in health care decisions (Szasz & Hollender 1952).[2] This may be considered a significant aspect of the discernible shift occurring in clinical medicine in regards to patients being granted a decision making status. Szasz and Hollender’s model of mutual participation acknowledged that “the patient’s own experiences provide reliable and important clues for therapy.” This model of the doctor-patient relationship involved a process of change the physician had to undergo to have a mutually constructive experience with the patient. Their analysis highlights certain necessary characteristics for a more highly developed relationship in the modern clinical context.
Spurred on by the rights movements of the 1960’s, changes in medical decision making characterized a decade animated by political, religious, and social unrest. Scholars from several fields, namely moral theology and religious studies, as well as medicine, law, and biology became increasingly involved in medical ethical issues. Henry K. Beecher published a paper in the New England Journal of Medicine, “Ethics and Clinical Research” (1966) in which he outlined 22 real cases of unethical human experimentation (Beecher 1966). This and other scandals generated a great deal of uproar among the public and the government reacted by commissioning specialists in ethics to come up with guidelines which eventually included the standards of informed consent.
By the 1970s, bioethics emerged to seriously address a number of critical issues brought on by technology and human experimentation. The Belmont Report resulted from an examination of ethical principles and intended to apply guidelines for informed consent, risk-benefit assessment and selections of subjects. The four principles of biomedical ethics, autonomy, beneficence, non-maleficence, and justice, provided a theoretical framework for practical decision making (Beauchamp & Childress 1979). Principlism, as it came to be known, was routinely praised as often as it was thoroughly criticized. Despite the intent of the four principles to carry equal ethical importance in balancing judgments, autonomy appeared to triumph over the other principles (Wolpe 1998).
The paternalistic perspective of deciding for patients and assuming a decision in their best interest gave way to the “contractual” perspective of discussing with the patient (Oken 1961; Novack 1979). Informing the patient adequately and gaining his consent for treatment in the end often meant accepting his decisions without questions, as if it were only a business contract. In bioethical practice, patient autonomy received great applause for respecting individual rights and subsequently important legal support (Patient Self-determination Act 1990). The intent to involve patients and to respect their autonomy became new terrain for both physicians and patients. Informing and not informing were two sides of the same coin minted as autonomy.
However, there have been conceptual problems with informed consent based exclusively on patient autonomy from the very beginning. For example, if the patient does not want to be involved in decision making, it is unfair to coerce him/her to make decisions regarding medical care (Ost 1984). Moreover, Howard Brody points out that even the contractual model that included the idea of patient autonomy was flawed and incomplete since “what does patient autonomy actually require of a physician?” (Brody 1989)[3].
To supplant the deficiencies of principlism, physicians, medical ethicists, and philosophers offered alternative models that expanded the four principles giving some of them different names (Payer 1988; Pellegrino & Thomasma 1996; English 1994; Engelhardt 1996; Veatch 1995).
John Evans noted that the rationalization of bioethical discourse has made it impossible to question what constitutes human good or the ends of medicine. The good of medicine has too often been transformed into meaning the enhancement of self-determination and the pursuit of individual choice. Yet, is ethics possible without the idea of the good? Insofar as bioethics gives its primary attention to crisis issues and the resolution of dilemmas, it undermines the basic presuppositions of medical practice and care. As a result, principlism and its contenders are prone to ever greater moral permissiveness precisely due to the failure of consensus and the employment of secular methodologies. (Evans 2002; Tham 2007)
In the most widely discussed analysis of physician-patient relationships, Emanuel and Emanuel elaborated four models: paternalistic, informative, interpretative, and deliberative (Emanuel & Emanuel 1992)[4]. As thorough as they may seem, these models do not correspond well with clinical experience since further analysis reveals a pattern of inconsistency in patients’ attitudes and behaviors. The search for a model or a set of models to address the complexity of the contemporary patient-physician relationship became historically untenable. The answer to dilemmas involving informed consent, truth-telling, or confidentiality do not lie simply with having a workable model (Clarke et al 2004)[5]. An integrative approach and new communication skills provide a better basis.
In recent years, new treatments for cancer patients necessitated talking with the patient, gaining their consent, and assisting the patient in the pursuit of his/her understanding of their best interest. Though patients want to and need to receive information in order to give consent, the actual choice could always be that they may hand over the decision making to the physician and/or to their family. Thus, fully informing may result in carefully delegating.
The focus on patient-physician communication, one of the key attributes of patient-centered care (Cassell 1985), involves breaking bad news better (Buckman & Kason 1992), finding a balance between physician power and patient choice (Quill & Brody 1996) and becoming culturally competent to provide appropriate health care (Carrese & Rhodes 1995). The large influx of immigrants to the United States in the 1980’s and 1990’s also precipitated a more substantial shift in practice: a set of skills termed cultural competency. At the same time, there was a demographic change in the medical profession going from a profession composed almost entirely of white men to one with significant numbers of men and women from racial minorities. (Relman 1980; Eisenberg 1989). All these factors provide fertile ground to re-examine the role of autonomy in patient’s decision making and informed consent.
Enhanced Autonomy as Patient Participation
In his book, The Theory and Practice of Autonomy, Gerald Dworkin (1988) describes personal autonomy as self-rule that is free from both the controlling interference by others and from limitations, such as inadequate understanding, that prevent meaningful choice. Acting freely is the essential element of autonomy. However, a construct of respect for autonomy need neither to be overly individualistic and excessively focused on reason nor unduly legalistic (Beauchamp & Childress 2001). In applying this construct of respect for the patient’s autonomy, the contemporary clinical dialogue necessarily focuses on the significance of talk. The last decade has witnessed a shift in application towards patient-centered approaches to health care delivery. A patient centered approach is basically humanistic and “puts a strong focus on patient participation in clinical decision making by taking into account the patients’ perspective, and tuning medical care to the patients’ needs and preferences” (Bensing 2000) . The exponential growth in research addressing the nature, dynamics, contexts and consequences of the medical dialogue indicate a twofold benefit: personally rewarding since it is relationship centered and optimally effective due to importance given to the value of human relationships (Roter & Hall 2006).
Since free will is an attribute of rational human beings, the notion of autonomy is universally valid. Both internal and external experiences and resources contribute to one’s autonomy since from the beginning of our lives, all of us are embedded in a context of social relations that sustain and shape us. The majority of physicians now agree that patient autonomy is actually a complex concept referring to both one’s capacity to choose and to one’s ability to implement one’s choices (Surbone 2006). A person may not always be able to exercise one or both of these aspects. Conditions can and do arise that necessitate delegating another, i.e. family member, friend or even a physician, to be the decision maker.
In this context, autonomy is more correctly described as relational, rather than merely a matter of individual choice. The term relational autonomy[6] does not refer to a single unified conception of autonomy but it is rather an umbrella term designating a range of related perspectives (Nedelsky1989; MacKenzie & Stoljar 2000). These perspectives are based on a shared conviction that persons are socially embedded and their identities are formed by social relationships and shaped by complex social determinants such as race, class, gender and ethnicity. An understanding of the notion of relational self frames the ethics of both informed consent issues and truth-telling dilemmas. A reasonable approach is to begin from a basis of unity (i.e. realizing that the person is embedded in a network of intimate relationships) and move outward to understand different approaches that reflect the same reality (i.e. eliciting personal worries and negotiating a decision making process.) The beneficent intention of deciding in favor of the good can be represented in a variety of ways based on the medium of cultural norms and different medical traditions (Letendre 2010). The physician, the individual patient, and the family now all share, in varying degrees, the decisional aspects of health care. For medical professionals as well as families, this discernible shift in practice signifies both challenge and opportunity.
This new modality is linked to a strong emphasis on patient autonomy in the doctor-patient relationship and the overwhelming lack of data that receiving bad news significantly impacts patient outcomes in treatment. The bioethical norm of respect for persons is embodied in the notion of autonomy. Drs. Back and Curtis (2002) noted in their study that the determination of the type of news that is judged to be bad constitutes a subjective judgment in the mind of the receiver, so when physicians assume that they are delivering bad news, they may influence patients’ responses. Several studies have documented that a large majority of both healthy adults and cancer patients from different countries want to be told about their diagnosis and prognosis (Kwak & Haley 2005). Skilled use of cross-cultural understanding and communication techniques increases the likelihood that both the process and outcomes of care are satisfactory for all involved. Studies in truth-telling and cultural differences reveal another important aspect, namely, dealing with culturally relevant bioethics (Kuczewski & McCruden 2001). The move towards an interpretative cross-cultural bioethics (Nie 2000) indicates that plurality of reasonable decision making possibilities do exist alongside each other.
Cross-Cultural Aspects of Health Care
Culture, which encompasses beliefs and behaviors that are learned and shared by members of a social group, fundamentally shape how individuals construct meaning out of particular life events. Explanations for disease, illness, suffering, and dying contribute to the cultural basis for confronting these events. The power of cultural identity can hardly be overestimated. With increased diversity in the USA, in many European countries, and in Australia, encounters between patients and physicians of different backgrounds are becoming more common. Cultural diversity is on the increase worldwide as immigration, travel, and the global economy make national borders more permeable. It is estimated that in the USA by the year 2050, minorities will make up forty-seven per cent of the population (Bigby 2003; Kagawa-Singer et al 2001; Cross et al 1989). The challenge for clinicians in an increasingly diverse society is met by understanding the cultural factors that influence patients’ responses to such issues as healing, suffering, chemically based medications, genetic predispositions, the stigma associated with certain conditions, and life threatening ailments.
Thus, the risk for cross-cultural misunderstandings surrounding care at the end-of-life is also increasing (Searight & Gafford 2005). Studies have shown significant cultural differences in attitudes towards truth-telling, life-prolonging technology, and decision making styles at the end of life. A new set of skills in cultural competency has been developed as an effort to improve health outcomes (Betancourt 2003).
Cultural competence for the physician would involve learning about the patient’s preferences and ethnic background. However, this is easier said than done. For instance, implementing procedures that require informed consent, a tangible proof of respecting individual choice, proved very difficult due to the patient or the family’s expectations of being shielded from the truth of an incurable condition (Muller & Desmond 1992). In other cases, the notion of signing a piece of paper for health care services could be foreign and disrespectful (Galanti 1991). Ethnicity shades the attitudes of many patients and therefore re-shapes patient autonomy and consent (Blackhall & Kagawa-Singer 1995). Ethnic groups brought with them cultural views of healthcare and a paradigm of the physician/patient relationship that frequently called in question the notion of universality of the four bioethical principles.
The ethical concerns and experiences of clinical practice tested bioethics as it met diverse cultural perspectives at the crossroads of twentieth century biomedicine. Multiculturalists state that physicians, patients, and their families can inhabit distinctively different social worlds and may be guided by diverse understandings of moral practice (Engelhardt 1996). The concepts of medicine and healing have definitions rooted in a myriad of cultural aspects: accumulated observation and writings, attitudes about health and illness, diverse medicinal approaches that are either natural or chemical, and most recently in scientific technological advances (Spector 2000). Communication between patient and physician is more aptly associated with patients’ perceptions of finding common ground with their physicians and trusting them (O’Neill 2002) and with improved health outcomes. Therefore, the enormous force of cultural viewpoints and the contemporary transformation of the physician/patient relationship in accommodating bioethical principles and gaining cultural competence (Betancourt 2003) mark a new step in shared decision making. Cultural competency in the clinician’s skill set becomes an asset in dealing with the aspects of care rooted in cultural differences and knowledge of the fact that a person of a particular ethnic background may not subscribe to his/her cultural medical tradition is foundational.
The important factor in becoming culturally competent is the understanding of how culture does influence a clinical relationship and not to over-emphasize cultural difference and fall prey to the mistaken idea that if the cultural root of the problem can be identified then the problem will be solved. The situation will always be more much complicated (Kleinman & Benson 2006). In the USA, the socio-cultural differences between patient and physician influence communication and clinical decision making. Language proficiency, the probable need for interpreters, acknowledging possible issues of mistrust, and the impact of culture on discussing negative information (Oliffe et al. 2007) form a significant part of mastering cultural competency. The downstream effect of such competency would be greater trust, fewer gaps, “moral growth, and a strengthening of fundamental professional commitments” (Barilan 2009).
Cultural norms specify behavior. “Honesty is an ideal value for most Americans, but it varies in strength as a real value for other cultures” (Spector 2000). Honor is highly prized in the Japanese culture as is female purity in the Islamic world. Direct eye contact is avoided in several cultures, notably Asian and the Middle Eastern culture; the Navaho use silence to formulate their thoughts in order to give the most complete answer. Trust is given only to family members in the Gypsy culture. Masculine and feminine pronouns do not exist in Asian languages, and “yes” does not always mean the affirmative since many cultures use the ‘yes’ as a way of avoiding an embarrassing ‘no’. This is just a short list of cultural variables that inform and form communication styles. A cross cultural health care ethic combines the tenets of patient–family centered care with an understanding of the social and cultural influences that affect the quality of medical services and treatment. Developing sensitivity to different cultures can make health care programs and activities attractive and interesting for a broader population base. In contrast, a lack of cultural sensitivity can deter people from using health care services.
The task of developing a richer understanding of the patient’s preferences becomes the fulcrum for integrating responsible choices in health care. In short, cultural competency on the part of the physician becomes capacity building for the patient. Knowledge of another’s cultural context is experienced as respect. This is human service of the highest order. Intercultural respect, therefore, has direct relevance for health care ethics (Gervais 1998) since in the health care setting personal decisions and actions need to be consistent with values, beliefs, and decision making customs. Oftentimes, the family’s role does indeed favor the best interests of the patient. The patient needs the information to make plans, select treatment options and include the family in providing and sustaining care as is traditionally done in communitarian societies such as China (Fan 2007).
Clinicians who possess a skillful use of patient centered questions, demonstrate an interest in cultural heritage, and are able to appraise the family’s role in decision making assist effectively in shared decision making. While offering autonomy to patients, cultural norms are respected while rights to decisions displaying “a relational self” are simultaneously acknowledged. The patient who refuses diagnostic information and prefers family-physician centered decision making has made a clear, voluntary choice (Searight & Gafford 2005). Physicians who care for patients with life-threatening conditions should discuss with them the extent to which they wish to involve their families in decisions at the end of life. To practice medicine according to a shared decision making model, physicians need to offer more explicit information, explore patients’ values and beliefs regarding serious illnesses, and respect their wishes throughout treatment (Angelos et al 2001).
Even though a patient desires a shared decision making style that includes the family, a family member may fear being blamed for providing inadequate care by other family members: in this instance, the physician’s role in providing care will be to mediate the conflict (Nolan et al 2008). Further study will be needed as the occurrence of a patient’s view of the relational self intersects with concordance in family participation in decision-making generally and in particular at the end of life. Further research is needed to design a communitarian paradigm of patient and family with the physician that helps patients make free decisions despite the burdens that their illnesses may bring (Patel & Bakken 2008). In the case of surrogate decision makers, research indicates that most surrogates of critically ill patients do not view withholding prognostic information as an acceptable way to maintain hope (Apatira et al 2008). Timely discussions help all members to prepare emotionally and existentially for the possibility of death. As the current trend in shared decision–making represents, the shift from individual to relational self marks a significant step in the journey towards a richer understanding of the self both in relation to preferred role and in the level of involvement.
Conclusion
A considerable distance has been covered in the past forty years of medical decision making. The so-called “doctor knows best” approach was abandoned in favor of a newer approach that respected the patient’s autonomy to consent for treatment and therapies through dialogue. However, an excessive emphasis on individual self-determination and autonomy was also considered inhuman and unsatisfactory. As soon as the patient was involved in medical decision making, the importance of sharing those decisions with family or deferring to the physician also became a reality (D’Antuono 2013).
Lately, cultural diversity challenged the assumption of common meaning. More importantly, it highlighted the need for broad understanding since a narrowly defined view of patient autonomy and a restricting application of the principle of informed consent in a cultural context produce adverse effects (Oliffe et al 2007). The prevailing evidence of research brings to light a considerable variation in patients’ preferences for participation and role in decision making (Ngo-Metzer et al 2006; Hallenbeck & Arnold 2007). A culturally relevant approach (Kuczewski & McCruden 2001; Brody & Hunt 2005, Turner 2005) advocated by bioethicists for medical decision making relies on seeking an understanding of cultural diversity and exploring its complexity; in fact, medical practice has specific cultural paradigms (Payer 1988).
Simply deciding in the best interests of the patient has developed into a complex field of choices: the preferred role, the degree of participation, the varying stages of seeking help, and the ability to determine the appropriate timing for shared decision making. Responsibility and deliberation bear especially on professional doctoring (Barilan 2009) since situations of conflict may accompany decision making and consent gaining in biomedicine.
The shift in the West from individual autonomy to relational autonomy in medical decision making invites new reflections on respecting personal dignity and identity. The words of Michelangelo, after he had already accomplished so much, “Sto ancora imparando” (And still I am learning), captures the momentum and focuses our attention on the needs of the human person as a relational self. It is not possible to equalize the ability to decide autonomously and the reality of implementing a healthcare decision that, of necessity, involves others. The objectivity of early conceptions of autonomy conflicts with the “subjective” dimensions currently experienced as the patients’ opinions on treatment, the effects a disease process has on the context of relationships and the numerous issues related to this framing of individual and collective experiences.
Admittedly, the indisputable achievement of the principle of autonomy gave shape to human identity. However, without the notion of relational autonomy, the design of human identity is incomplete. Relational autonomy affords both objectivity and subjectivity since it responds to and interprets the deeper sensibilities of the human person. The next step in achieving the shift would require a change of point of view, and not of language. To embrace the model of the relational self would improve practice and move the issue of shared decision making to a broader and important context.
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[1] Address correspondence to S. Joseph Tham, LC, MD, PhD, Faculty of Bioethics, Ateneo Pontificio Regina Apostolorum, Via Aldobrandeschi, 190 Rome, Italy. E-mail: [email protected]aries.org
Address correspondence to Marie Catherine Letendre, PhD, Dept. of Religious Studies, Marymount International, Via di Villa Lauchli, 180 Rome, Italy. E-mail: [email protected]
1 The authors discuss three models: Model One-Activity-Passivity in which treatment takes place irrespective of the patient’s contribution and regardless of the outcome; Model Two-Guidance & Cooperation in which both person are active in that they contribute to the relationship but the main difference pertains to power and to its actual or potential use; Model Three-Mutual Participation in which the doctor helps the patient help himself/herself and a partnership emerges.
[3] Dr. Brody favors a “transparency standard” under which physicians explain the thinking behind their selection of treatment and then encourages patients to ask questions. Informed consent is achieved if a patient agrees to a treatment after thinking has been made transparent. Rather than having to list every possible risk a “reasonable patient” might wish to know to make a decision, physicians would be legally responsible only for explaining their own reasoning.
[4] The authors defined the models as follows:
paternalistic: physician makes decisions for the patient’s benefit independent of patient’s values and desires
informative: physician provides information, patient applies values and decides
interpretative: patient is uncertain about values, physician, as counselor, assists the patient in elucidating values
deliberative: patient is open to development, physician teaches desirable values. Emanuel and Emanuel argue in favor of the deliberative model, seeing the others as exceptions to the norm that require justification.
[5] The authors cite in their research that there was no significant correlation between patients wanting to make the decision to be put on a ventilator and their having legally appointed a surrogate and mention other inconsistencies with regard to medical decision making that one would expect most patients to be able to make. Their research indicates that there appears to be considerable variety in patient preferences for decision models, so the search for a single best model is based on a misguided assumption that one protocol fits all clinical situations or even may fit all situations.
[6] Historically, Jennifer Nedelsky was the first person to specify the concept of relational autonomy from an explicitly feminist perspective.
