Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022) have highlighted the importance of shared decision-making (SDM) regarding medication management for enabling residents to preserve their autonomy despite residing in a long-term care (LTC) facility. This commentary begins with a brief thesis on the context of modernization as promoting values of autonomy and SDM and as enhancing the need to seek LTC outside the family. It continues with addressing autonomy in LTC and SDM with older adults. It then provides alternative interpretations to some of the research data for expanding its findings. It ends with addressing the innovations of the study and further investigation. When, for whom, and how important is SDM on medication management are also addressed.
Autonomy, SDM, and LTC institutions in the context of modernization
Autonomy and SDM with LTC residents could be perceived as related to values developing with modernization (Aboderin, Reference Aboderin2004). Modernization is characterized by medical, technological, and industrial developments, urbanization, and education to all (Cowgill, Reference Cowgill1974) regardless of class and gender. Medical development has increased life expectancy and the proportion of older adults in society. Industrial development has enhanced urbanization of younger generations. This in turn has contributed to change in family structure from expanded towards nuclear. Thus, most older adults no longer reside with their adult children in expanded families and find alternative caregiving arrangements (Aboderin, Reference Aboderin2004). Furthermore, enabling education for all has enhanced the value of gender equality leading to change in role expectations and adopting values of individualism, self-determination, and autonomy. As such, women who in the past received a limited education and fulfilled caregiving tasks for younger and older generations in the family have with modernization, gained higher access to education, and are engaged in employment outside their household (Bertram and Ehlert, Reference Bertram and Ehlert2011). Thus, older adults living longer seek alternative caregiving arrangements such as in LTC facilities. However, such facilities include features of total institutions (Koren and Ayalon, Reference Koren and Ayalon2022). According to Goffman (Reference Goffman1961), all aspects of residents’ life in total institutions are conducted in the same place and under the same single authority. Residents are treated alike andare required to do the same things imposed from above by medical staff and management authorities to fulfill the official aims of the institution (Bengtsson and Bülow, Reference Bengtsson and Bülow2016) such as prolonging residents’ lives (Collopy, Reference Collopy1988). However, values of individualism rapidly developing along with modernization have questioned paternalist attitudes towards patients and residents in total institutions, thus advancing awareness towards their autonomy.
Autonomy in LTC
Autonomy includes self-determination, independence, freedom, liberty of choice, and action. It represents control of activities such as decision-making (Collopy, Reference Collopy1988), alone or with others who have been appointed to participate in the decision-making process, unrestricted by external forces (Cicirelli, Reference Cicirelli1990). It refers to human agency, free of outside intervention, and interference (Collopy, Reference Collopy1988) such as powerful others, institutional rules, and regulations. Yet, under condition that such actions should not be harmful to others (Cicirelli, Reference Cicirelli1990). Autonomy to decide for oneself is a primary concern, particularly for older adults with multiple illnesses (Schüz et al., Reference Schüz2016) and especially for those residing in LTC facilities (Collopy, Reference Collopy1988; Funk, Reference Funk2004; Koren and Doron, Reference Koren and Doron2009) characterized by features of total institutions (Koren and Ayalon, Reference Koren and Ayalon2022). Autonomy preservation within LTC institutions could be achieved for example by SDM in medication management. SDM has developed in the last decades along with values of individualism, self-determination, and autonomy preservation questioning paternalist attitudes of physicians towards adult patients (Falkum and Førde, Reference Falkum and Førde2001).
SDM with older adults
SDM is a collaborative interprofessional patient-centered approach to medical care. It involves exchange of information between healthcare professionals, patient, and significant family members with sensitivity to values, norms, and environmental constrains throughout the decision-making process (Cranley et al., Reference Cranley2020). Although SDM in medication management is developing (Adams et al., Reference Adams, Price, Tucker, Nguyen and Wilson2012), there is need to emphasize it more between older patients and their physicians (Banning, Reference Banning2008) especially in LTC institutions. Despite its potential benefits, little is known on SDM within LTC facilities from residents’ perspectives and experiences. Previous research in this Journal has addressed SDM in the context of Dementia (e.g., Davies et al., Reference Davies, Schiowitz, Rait, Vickerstaff and Sampson2019; Groen-van de Ven et al., Reference Groen-van de Ven2018) but not necessarily in the context of LTC or specifically focusing on medication management. By increasing residents’ and family members’ involvement in medical care issues, SDM in LTC institutions has the potential not only to increase quality care interventions and enhance satisfaction for all involved (Cranley et al., Reference Cranley2020) but also to promote a sense of agency and autonomy.
Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022) in their article have addressed these issues from the perspectives of frail yet cognitively intact residents who could express their views and experiences in English. Data were collected from residents in three types of LTC facilities: low care, high care, and facilities with both low and high care. The qualitative approach to learn about SDM from residents’ experiences enabled to present its complexity (Braun and Clarke, Reference Braun and Clarke2013) that is more than either SDM being employed or not. It enabled to bring the voices and wishes of the residents themselves rather than presenting SDM as a value that should be promoted regardless of residents’ wishes. Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022) research findings presented a range of experiences based on residents’ beliefs and wishes regarding: (a) their ability to control decision making, (b) how they perceived the necessity of their medication, (c) satisfaction with their medications, and (d) how they experienced their opportunities to be involved in SDM with medical figures of their choice. Furthermore, we also learn that not all residents are interested to engage in SDM. Some do not believe in it; some are satisfied with their medication and those who wish to be involved in SDM are usually given the opportunity.
An important contribution of their study (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022) is the model presented at the end of their article to assist with improving conditions to enable SDM, reflecting their broad approach to SDM. The model includes five steps (see Figure 1 in Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022). The first step suggests assessing residents’ capability, beliefs, values, and preference for SDM. The second step suggests negotiating and deciding with the resident which SDM approach to take if at all and with whom. Thus, leaving space for residents to choose if and how they wish to be involved in SDM. Steps three and four refer directly to providing information about the benefits and harm of medications, aligning medication decisions with resident’s goals and their advance directives if they have such. The fifth step refers to implementation of decisions.
Alternative interpretations expanding the research findings
To expand the research findings, the following section provides alternative interpretations to some of the experiences quoted in Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022) article. Out of those who preferred not to engage in SDM were those who felt they did not have enough knowledge and trusted others to make the appropriate decision. Others felt incapable for example:
“What is the good of having these discussions? You can't remember. I forget. The doctors see all this, my daughter-in-law gets involved a lot of people worry about it – I don't” (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022).
This experience could represent the wish to let go of decision-making, leaving it to others whom they trust. One interpretation could be the resident’s internalization of the traditional patient role (Banning, Reference Banning2008). However, a different interpretation could perhaps be referring to decision-making as a burden the resident wishes to let go of while entrusting it to significant others such as family members and medical staff. Therefore, values such as SDM should not be imposed from outside forces such as policy makers, scholars, and researchers (an etic approach), but rather from within the residents’ wishes (an emic approach). Additional experiences presented in the article could have revealed, with more in-depth analysis, a more complex experience for example of ambivalence as in the following quote:
“[….] I don't know about them except they taste like poison. I place all my trust in the doctors, and I feel they know what I need more so that I do what I’m told, and I’m guided by them” (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022).
Stating that the medicine tastes “like poison” and then stating trust in the doctors and doing what is told could indicate ambivalence along with a sense of lack of control: “I do what I’m told”. The ambivalence that is reflected in this experience might indicate that SDM or any other autonomous behavior cannot bring back the older adults’ capabilities that have been lost. A loss that has contributed to becoming residents in LTC facilities (Cohen, Reference Cohen1988) and in addition emphasizing decline in agency. Other experiences strengthen the notion that there are older residents who have learned to live with their situation without trying to fight it as follows:
“I’ve got a lot [of medications]. To me, it’s just another sign of getting older, which doesn't thrill me to bits.… I’d like it to be less. Love it be less, but if I need that many, I need that many and I’ve got to take them and bear with it” (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022).
Linking the need of a lot of medication to getting older, and as such being unsatisfied with old age, yet giving in and accepting the situation, are not always recognized as desirable in modern western cultures. It might even be considered as internalizing agist attitudes towards oneself (Levy, Reference Levy2001). Perhaps western society should consider adopting a more eastern oriental approach of the ability to live in peace with loss of capabilities in old age (Lamb, Reference Lamb2014), enable the autonomy to be dependent (Collopy, Reference Collopy1988) and recognize it as a legitimate option for elders.
There were also residents who experienced they were not given the opportunity to SDM and could have benefited from it if the option were given to them. One resident (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022) found out she could not continue with her former physician. This illustrates a total institution feature (Goffman, Reference Goffman1961) that residents’ lives are conducted under the same single authority (Bengtsson and Bülow, Reference Bengtsson and Bülow2016) with outside consultation possibly endangering such authority.
A minority of the residents interviewed reported to have been engaged in SDM on medication management. However, most experiences indicate that residents were usually given the opportunity to SDM if interested. Thus, a range of experiences are illustrated, from residents wanting to be more involved at one end and those not interested because they trust others and/or have learned to live in peace with their situation at the other end.
The study innovations and further investigation
An important innovation of the study is the broad definition Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022) adopt for SDM by considering residents’ beliefs, values, and capacities, and deciding with the residents on the approach to choose. Thus, SDM also includes the option for residents to choose not to be involved in decision-making regarding their medication and leave the decision to medical staff and family members. Such an approach is person-centered enabling residents to choose whether to take part in decision-making over medication or not. It could broaden autonomy as a concept that includes the choice to depend on others if those are the resident’s wishes. Therefore, wishes to be involved in decision-making about medication, and unwillingness to be engaged in such decisions should be respected alike (Funk, Reference Funk2004). Furthermore, perhaps instead of referring to not being involved in decision-making as a barrier it could be referred to as freedom of choice not to be involved. We learn from this study that the voices of residents who are the primary subjects for whom SDM in medication management is promoted, are not always interested, or perceive it as important to be involved. Thus, residents’ voices, beliefs, and values should have priority as suggested by Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022). Such an approach invites further investigation on the role of agency and freedom of choice for LTC residents.
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Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022) have highlighted the importance of shared decision-making (SDM) regarding medication management for enabling residents to preserve their autonomy despite residing in a long-term care (LTC) facility. This commentary begins with a brief thesis on the context of modernization as promoting values of autonomy and SDM and as enhancing the need to seek LTC outside the family. It continues with addressing autonomy in LTC and SDM with older adults. It then provides alternative interpretations to some of the research data for expanding its findings. It ends with addressing the innovations of the study and further investigation. When, for whom, and how important is SDM on medication management are also addressed.
Autonomy, SDM, and LTC institutions in the context of modernization
Autonomy and SDM with LTC residents could be perceived as related to values developing with modernization (Aboderin, Reference Aboderin2004). Modernization is characterized by medical, technological, and industrial developments, urbanization, and education to all (Cowgill, Reference Cowgill1974) regardless of class and gender. Medical development has increased life expectancy and the proportion of older adults in society. Industrial development has enhanced urbanization of younger generations. This in turn has contributed to change in family structure from expanded towards nuclear. Thus, most older adults no longer reside with their adult children in expanded families and find alternative caregiving arrangements (Aboderin, Reference Aboderin2004). Furthermore, enabling education for all has enhanced the value of gender equality leading to change in role expectations and adopting values of individualism, self-determination, and autonomy. As such, women who in the past received a limited education and fulfilled caregiving tasks for younger and older generations in the family have with modernization, gained higher access to education, and are engaged in employment outside their household (Bertram and Ehlert, Reference Bertram and Ehlert2011). Thus, older adults living longer seek alternative caregiving arrangements such as in LTC facilities. However, such facilities include features of total institutions (Koren and Ayalon, Reference Koren and Ayalon2022). According to Goffman (Reference Goffman1961), all aspects of residents’ life in total institutions are conducted in the same place and under the same single authority. Residents are treated alike andare required to do the same things imposed from above by medical staff and management authorities to fulfill the official aims of the institution (Bengtsson and Bülow, Reference Bengtsson and Bülow2016) such as prolonging residents’ lives (Collopy, Reference Collopy1988). However, values of individualism rapidly developing along with modernization have questioned paternalist attitudes towards patients and residents in total institutions, thus advancing awareness towards their autonomy.
Autonomy in LTC
Autonomy includes self-determination, independence, freedom, liberty of choice, and action. It represents control of activities such as decision-making (Collopy, Reference Collopy1988), alone or with others who have been appointed to participate in the decision-making process, unrestricted by external forces (Cicirelli, Reference Cicirelli1990). It refers to human agency, free of outside intervention, and interference (Collopy, Reference Collopy1988) such as powerful others, institutional rules, and regulations. Yet, under condition that such actions should not be harmful to others (Cicirelli, Reference Cicirelli1990). Autonomy to decide for oneself is a primary concern, particularly for older adults with multiple illnesses (Schüz et al., Reference Schüz2016) and especially for those residing in LTC facilities (Collopy, Reference Collopy1988; Funk, Reference Funk2004; Koren and Doron, Reference Koren and Doron2009) characterized by features of total institutions (Koren and Ayalon, Reference Koren and Ayalon2022). Autonomy preservation within LTC institutions could be achieved for example by SDM in medication management. SDM has developed in the last decades along with values of individualism, self-determination, and autonomy preservation questioning paternalist attitudes of physicians towards adult patients (Falkum and Førde, Reference Falkum and Førde2001).
SDM with older adults
SDM is a collaborative interprofessional patient-centered approach to medical care. It involves exchange of information between healthcare professionals, patient, and significant family members with sensitivity to values, norms, and environmental constrains throughout the decision-making process (Cranley et al., Reference Cranley2020). Although SDM in medication management is developing (Adams et al., Reference Adams, Price, Tucker, Nguyen and Wilson2012), there is need to emphasize it more between older patients and their physicians (Banning, Reference Banning2008) especially in LTC institutions. Despite its potential benefits, little is known on SDM within LTC facilities from residents’ perspectives and experiences. Previous research in this Journal has addressed SDM in the context of Dementia (e.g., Davies et al., Reference Davies, Schiowitz, Rait, Vickerstaff and Sampson2019; Groen-van de Ven et al., Reference Groen-van de Ven2018) but not necessarily in the context of LTC or specifically focusing on medication management. By increasing residents’ and family members’ involvement in medical care issues, SDM in LTC institutions has the potential not only to increase quality care interventions and enhance satisfaction for all involved (Cranley et al., Reference Cranley2020) but also to promote a sense of agency and autonomy.
Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022) in their article have addressed these issues from the perspectives of frail yet cognitively intact residents who could express their views and experiences in English. Data were collected from residents in three types of LTC facilities: low care, high care, and facilities with both low and high care. The qualitative approach to learn about SDM from residents’ experiences enabled to present its complexity (Braun and Clarke, Reference Braun and Clarke2013) that is more than either SDM being employed or not. It enabled to bring the voices and wishes of the residents themselves rather than presenting SDM as a value that should be promoted regardless of residents’ wishes. Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022) research findings presented a range of experiences based on residents’ beliefs and wishes regarding: (a) their ability to control decision making, (b) how they perceived the necessity of their medication, (c) satisfaction with their medications, and (d) how they experienced their opportunities to be involved in SDM with medical figures of their choice. Furthermore, we also learn that not all residents are interested to engage in SDM. Some do not believe in it; some are satisfied with their medication and those who wish to be involved in SDM are usually given the opportunity.
An important contribution of their study (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022) is the model presented at the end of their article to assist with improving conditions to enable SDM, reflecting their broad approach to SDM. The model includes five steps (see Figure 1 in Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022). The first step suggests assessing residents’ capability, beliefs, values, and preference for SDM. The second step suggests negotiating and deciding with the resident which SDM approach to take if at all and with whom. Thus, leaving space for residents to choose if and how they wish to be involved in SDM. Steps three and four refer directly to providing information about the benefits and harm of medications, aligning medication decisions with resident’s goals and their advance directives if they have such. The fifth step refers to implementation of decisions.
Alternative interpretations expanding the research findings
To expand the research findings, the following section provides alternative interpretations to some of the experiences quoted in Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022) article. Out of those who preferred not to engage in SDM were those who felt they did not have enough knowledge and trusted others to make the appropriate decision. Others felt incapable for example:
“What is the good of having these discussions? You can't remember. I forget. The doctors see all this, my daughter-in-law gets involved a lot of people worry about it – I don't” (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022).
This experience could represent the wish to let go of decision-making, leaving it to others whom they trust. One interpretation could be the resident’s internalization of the traditional patient role (Banning, Reference Banning2008). However, a different interpretation could perhaps be referring to decision-making as a burden the resident wishes to let go of while entrusting it to significant others such as family members and medical staff. Therefore, values such as SDM should not be imposed from outside forces such as policy makers, scholars, and researchers (an etic approach), but rather from within the residents’ wishes (an emic approach). Additional experiences presented in the article could have revealed, with more in-depth analysis, a more complex experience for example of ambivalence as in the following quote:
“[….] I don't know about them except they taste like poison. I place all my trust in the doctors, and I feel they know what I need more so that I do what I’m told, and I’m guided by them” (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022).
Stating that the medicine tastes “like poison” and then stating trust in the doctors and doing what is told could indicate ambivalence along with a sense of lack of control: “I do what I’m told”. The ambivalence that is reflected in this experience might indicate that SDM or any other autonomous behavior cannot bring back the older adults’ capabilities that have been lost. A loss that has contributed to becoming residents in LTC facilities (Cohen, Reference Cohen1988) and in addition emphasizing decline in agency. Other experiences strengthen the notion that there are older residents who have learned to live with their situation without trying to fight it as follows:
“I’ve got a lot [of medications]. To me, it’s just another sign of getting older, which doesn't thrill me to bits.… I’d like it to be less. Love it be less, but if I need that many, I need that many and I’ve got to take them and bear with it” (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022).
Linking the need of a lot of medication to getting older, and as such being unsatisfied with old age, yet giving in and accepting the situation, are not always recognized as desirable in modern western cultures. It might even be considered as internalizing agist attitudes towards oneself (Levy, Reference Levy2001). Perhaps western society should consider adopting a more eastern oriental approach of the ability to live in peace with loss of capabilities in old age (Lamb, Reference Lamb2014), enable the autonomy to be dependent (Collopy, Reference Collopy1988) and recognize it as a legitimate option for elders.
There were also residents who experienced they were not given the opportunity to SDM and could have benefited from it if the option were given to them. One resident (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022) found out she could not continue with her former physician. This illustrates a total institution feature (Goffman, Reference Goffman1961) that residents’ lives are conducted under the same single authority (Bengtsson and Bülow, Reference Bengtsson and Bülow2016) with outside consultation possibly endangering such authority.
A minority of the residents interviewed reported to have been engaged in SDM on medication management. However, most experiences indicate that residents were usually given the opportunity to SDM if interested. Thus, a range of experiences are illustrated, from residents wanting to be more involved at one end and those not interested because they trust others and/or have learned to live in peace with their situation at the other end.
The study innovations and further investigation
An important innovation of the study is the broad definition Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022) adopt for SDM by considering residents’ beliefs, values, and capacities, and deciding with the residents on the approach to choose. Thus, SDM also includes the option for residents to choose not to be involved in decision-making regarding their medication and leave the decision to medical staff and family members. Such an approach is person-centered enabling residents to choose whether to take part in decision-making over medication or not. It could broaden autonomy as a concept that includes the choice to depend on others if those are the resident’s wishes. Therefore, wishes to be involved in decision-making about medication, and unwillingness to be engaged in such decisions should be respected alike (Funk, Reference Funk2004). Furthermore, perhaps instead of referring to not being involved in decision-making as a barrier it could be referred to as freedom of choice not to be involved. We learn from this study that the voices of residents who are the primary subjects for whom SDM in medication management is promoted, are not always interested, or perceive it as important to be involved. Thus, residents’ voices, beliefs, and values should have priority as suggested by Sawan et al. Reference Sawan, Jeon, Hilmer and Chen(2022). Such an approach invites further investigation on the role of agency and freedom of choice for LTC residents.
Conflict of interest
The author has no conflicts of interests.