Deliberative Forms of Government: Impact (Uses) of Deliberation in Healthcare

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8th Feb 2020 Health Reference this

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Introduction

The concept of deliberative democracy in itself is not a new phenomenon. Its existence dates back over 2000 years ago when the concept of democracy itself was first instituted in ancient Greece during the 6th century BC. It postulates the idea that since the society is comprised on individuals who are ruled by people from that society then the leaders appointed/imposed should not merely be left to act aloof but should act in consonance with the interest and yearnings of the populace at all times. In view of this, institutions could be established across the various sectors of the society which are grounded in the public’s values and concerns who then projects the wishes and opinion of the members of the society to the leaders. The concept of deliberative democracy has increased in prominence over time such that it is now the most vibrant area of scholarship in political theory (Pateman, 2012). This has created a foundation upon which the concept has been further applied in diverse fields such as healthcare, international relations, comparative politics, public administration, law, psychology, ethics, planning, policy analysis, ecological economics, sociology, environmental governance, and communication studies. It is safe to say that the impact and relevance of deliberative democracy is applicable to most fields of human endeavor. The core of deliberative democracy is considered to be authentic deliberation and consensus decision-making, which can happen in both direct (participative) and representative (delegated) democracies, giving rise to the notions of populist and elitist deliberative democracy, respectively (Elster 1998, Drvzek 2010 and Ercan 2014).

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The term deliberative democracy is quite broad in scope and is thus subject to misconceptions in its use and application. This is why the determination of the characteristic features of deliberative democracy is almost as important as the concept itself. According to Fishkin (2011) there are 5 main characteristics essential for legitimate deliberation which is;

1)     Availability of relevant and accurate information to all participants;

2)     Substantive balance of different positions based on evidence;

3)     Diversity of positions relevant to the matter;

4)     Conscientious consideration of all arguments; and

5)     Equal consideration of views as weighed by evidence

The presence of these features validates any process as deliberative. The health sector is a significantly information driven sector. Every action undertaken by anyone is always a function of available information. The sector leaves little room for creativity and innovation and if anyone would be creative with their approach to service delivery then such decision must be taken based on the analysis of the available information.

Deliberation in the Healthcare Sector

The healthcare sector of any country is one of the most important sectors in the economy. There’s no understating the importance and relevance of health to productivity and wellbeing. The last decade has seen a convergence by healthcare and public health researchers on deliberative democracy methods as a means to bring people’s opinions and values into health policy processes (Street, 2014). The selling point of deliberative democracy in itself is the accountability and participation that it offers. It can be inferred for instance that deliberative methods in healthcare offer policymakers the prospect of higher transparency and public accountability and this would only improve the effectiveness and efficiency of services in the sector. Policies formed 2 through public participation in deliberative processes can be considered to be more legitimate, justifiable, and, therefore, feasible than policies made through more traditional hierarchical modes of governance (Solomon & Abelson, 2012).

Democracy is a system of governance which recognizes the rights of individuals in the society they reside. As more and more nations began to warm up to the concept of democracy, the awareness of the rights of the citizens to have an opinion concerning healthcare services provided to them began to gather momentum especially in the period after the Second World War. More and more nations began to recognize the rights of citizens regardless of their social delineation or status for participation in health care planning as well as policy development and implementation. Gradually, as these rights gained wider acceptance they were eventually adopted by the World Health Organization in a document named as the Alma Ata Declaration, in 1978. Specifically, this declaration acknowledged that “people have the right and duty to participate individually and collectively in the planning and implementation of their health care” (WHO 1978).

The term deliberative democracy is not as popular in the health care settings as it is in the academia. The notion of shared decision making (SDM) is of more popular use in the health care settings than deliberative democracy. Although deliberative democracy is not as frequently used, it nevertheless is a popular concept within the sector. Understandably, the health care system is multifaceted and dynamic in nature which is why shared decision making is engrafted in the practices in the sector. The synergy that operates in health settings is fuelled by the level of interactions and communication flow among every official in the setting. For instance, every health agency will have different departments all of which collaborates together to provide the range of different health and rehabilitative services for the patients. It cannot be feasible that a single official stands to make decisions on the behalf of all without seeking the opinions of officials from the other departments. Decisions ranging from the most important and the most insignificant much be discussed and conclusions jointly reached because separate decisions by each department could jeopardize the activities of the other departments and may put the health of the patients of such health center at risk. Participation in the decision making in the health care setting could be in terms of roles played by different stakeholders e.g. such individuals such as taxpayers, community members, and/or patients all contribute directly or indirectly to decision making.

Governments’ proclamations for fostering user and public involvement are often based on expectations of improvement in the quality of care, greater responsiveness of services to patients’ needs and wishes, and more accountability on the part of providers and managers (Martin and Finn, 2011, Donovan and Coast 1996 and Calnan 1997). It is expected that citizens input always contribute to the effectiveness and efficiency of any activity because the citizens are in the best position to evaluate the services rendered to them. This is not an unsupported notion because Tenbensel (2010) identifies two broad and interrelated rationales for public involvement. The first one being mainly concerned with the democratic legitimacy of policy processes, in general, and health policy in particular. And the second rationale being more focused on the contention that public input produces better and more intelligent health policy decisions.

Blacksher, Diabel, Forest, Goold and Abelson (2012) postulated the idea that it is important for a deliberative process especially one that could potentially be adopted in the healthcare sector to have atleast the following requirements;

(i) Provide participants with balanced factual information;

(ii) Ensure that a sufficiently diverse range of potentially conflicting, minority and marginal perspectives are considered; and

(iii) Create opportunities for free and open discussion and debate within and between citizens and researchers or policy actors, or both, to challenge and test competing claims

These conditions are quite achievable in other sectors with little effort but it requires concerted efforts for it to be achieved in the healthcare sector and this is due to the following factors; cost, scale and efficiency.

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As expected, healthcare is an incredibly wide sector and as a result, deliberative democracy might not be applicable as a policy statement for every aspect of healthcare. It is not a hidden fact that the health sector is a highly specialized industry where extensive training is required due to the critical nature of the task they perform. As a result, it might be unethical for everyone to have an input in how activities are conducted in the profession. If there is one industry where expert knowledge and opinion is of major importance, it is the healthcare industry. This might put the health of the patients at risk because there is the tendency for patients to seek for what is comfortable at the detriment of what is healthy. Yet, the best option for a patient’s health and wellbeing might not be necessarily the most convenient option for them. For instance, a patient with a condition that warrants receiving injection and taking drugs simultaneously may voice their opposition to injections even when that is clearly the better choice for them to make.

Public participation in health sector is commonly denoted by such terms as “community participation”, “public input”, “patient collaboration”, “patient partnership”, “shared decision-making”, “informed consent”, “user involvement”, “patient-centeredness”, “patient autonomy” etc”. All of these terms are merely pointing to the concept of deliberative democracy as regards the health sector. These terms may connote other meanings in other settings but they explain the role of healthcare practitioners to consult with each other prior to making an informed decision. Importantly, Charles and DeMaio (1993) presented a more extensive participation framework in which three dimensions of domains, roles, and levels are considered. Domains refer to the issues to be decided in which three subcategories which are; treatment of individual patients; service delivery for a defined region or a particular health facility; and macro health care policies are recognized. Essentially, there are conditions where deliberative strategies might be beneficial in the healthcare industry and there are situations it might not be applicable. According to Lehoux, Daudelin, Demers-Payette and Boivin 2009; Rychetnik, Carter, Abelson, Thornton, Barratt and Entwistle, 2013, they are best suited to resolving complex policy issues where people’s values are of central importance either because of the number of people affected or the profound impact on individuals. Deliberative methods are particularly useful for policy questions about:

(i) Situations involving clear conflicts between ethical imperatives (justice, beneficence, and respect for autonomy for example) such that the decision entails the unavoidable creation of unlucky or even unjustly treated individuals or populations; and/or

(ii) So-called ‘hybrid issues’. These are issues where the technical and normative aspects of a question are profoundly interwoven, including when there is significant technical uncertainty or normative conflict.

Levels of Participation

It is important to clarify the scope of participation in the health care sector as it tends to vary from time to time and without adequate clarification, there is the tendency to misrepresent deliberative participation when it is actually in operation. What we know about the levels of participation regarding participation is based upon the work of Arnstein who wrote extensively on the typology of citizen participation and this  was presented as an eight-rung ladder,43 where lower rungs depict “non-participation”, the middle rungs indicate “degrees of tokenistic” participation, and the upper rungs show “degrees of citizen power”, numerous researchers have suggested either simpler or more nuanced and often less critical hierarchical models of public or patient participation in health care decision-making. For instance, Finegold suggests a framework in which five degrees of participation in the ascending order of citizen/patient control is distinguished: informing, consultation, partnership, delegated power, and citizen control (Finegold, 1997).

Laws are consistently being made to facilitate and improve participation in decision making across board in many developed nations. In the United States for example, efforts to engage the public and patients in health care are rather recent. Washington State was the first state that passed legislation to promote Shared Decision Making in 2007. This served as a template which several other states eventually bought into by following the footsteps of the capital state with legislations underway (Frosch, Moulton, Wexler, Holmes-Royner, Volk and Levin, 2011). Deliberative democracy has continued to receive attention in the states implicitly and explicitly through the development of decision aids or supports has been emphasized as part of the provisions of Patient Protection and Affordable Care and the Health Care and Education Reconciliation Acts (both enacted in 2010 by the Federal Government) to reform the delivery of health care (Frosch et al, 2011). At the same time, there is a proliferation of nonprofit, for-profit, and academic organizations that are engaged in developing various decision aids to help SDM in primary care and clinical settings. In neighboring Canada, steps are also being taken in the direction of paving the way for more deliberative input in the healthcare sector. There are provincial governments responsible for planning and delivery of health care services, efforts to reform the system for greater public or community participation have been initiated through devolution of authority for decision-making from the provincial governments to regional, district, or local bodies (PMC, 1994).

References

Introduction

The concept of deliberative democracy in itself is not a new phenomenon. Its existence dates back over 2000 years ago when the concept of democracy itself was first instituted in ancient Greece during the 6th century BC. It postulates the idea that since the society is comprised on individuals who are ruled by people from that society then the leaders appointed/imposed should not merely be left to act aloof but should act in consonance with the interest and yearnings of the populace at all times. In view of this, institutions could be established across the various sectors of the society which are grounded in the public’s values and concerns who then projects the wishes and opinion of the members of the society to the leaders. The concept of deliberative democracy has increased in prominence over time such that it is now the most vibrant area of scholarship in political theory (Pateman, 2012). This has created a foundation upon which the concept has been further applied in diverse fields such as healthcare, international relations, comparative politics, public administration, law, psychology, ethics, planning, policy analysis, ecological economics, sociology, environmental governance, and communication studies. It is safe to say that the impact and relevance of deliberative democracy is applicable to most fields of human endeavor. The core of deliberative democracy is considered to be authentic deliberation and consensus decision-making, which can happen in both direct (participative) and representative (delegated) democracies, giving rise to the notions of populist and elitist deliberative democracy, respectively (Elster 1998, Drvzek 2010 and Ercan 2014).

The term deliberative democracy is quite broad in scope and is thus subject to misconceptions in its use and application. This is why the determination of the characteristic features of deliberative democracy is almost as important as the concept itself. According to Fishkin (2011) there are 5 main characteristics essential for legitimate deliberation which is;

1)     Availability of relevant and accurate information to all participants;

2)     Substantive balance of different positions based on evidence;

3)     Diversity of positions relevant to the matter;

4)     Conscientious consideration of all arguments; and

5)     Equal consideration of views as weighed by evidence

The presence of these features validates any process as deliberative. The health sector is a significantly information driven sector. Every action undertaken by anyone is always a function of available information. The sector leaves little room for creativity and innovation and if anyone would be creative with their approach to service delivery then such decision must be taken based on the analysis of the available information.

Deliberation in the Healthcare Sector

The healthcare sector of any country is one of the most important sectors in the economy. There’s no understating the importance and relevance of health to productivity and wellbeing. The last decade has seen a convergence by healthcare and public health researchers on deliberative democracy methods as a means to bring people’s opinions and values into health policy processes (Street, 2014). The selling point of deliberative democracy in itself is the accountability and participation that it offers. It can be inferred for instance that deliberative methods in healthcare offer policymakers the prospect of higher transparency and public accountability and this would only improve the effectiveness and efficiency of services in the sector. Policies formed 2 through public participation in deliberative processes can be considered to be more legitimate, justifiable, and, therefore, feasible than policies made through more traditional hierarchical modes of governance (Solomon & Abelson, 2012).

Democracy is a system of governance which recognizes the rights of individuals in the society they reside. As more and more nations began to warm up to the concept of democracy, the awareness of the rights of the citizens to have an opinion concerning healthcare services provided to them began to gather momentum especially in the period after the Second World War. More and more nations began to recognize the rights of citizens regardless of their social delineation or status for participation in health care planning as well as policy development and implementation. Gradually, as these rights gained wider acceptance they were eventually adopted by the World Health Organization in a document named as the Alma Ata Declaration, in 1978. Specifically, this declaration acknowledged that “people have the right and duty to participate individually and collectively in the planning and implementation of their health care” (WHO 1978).

The term deliberative democracy is not as popular in the health care settings as it is in the academia. The notion of shared decision making (SDM) is of more popular use in the health care settings than deliberative democracy. Although deliberative democracy is not as frequently used, it nevertheless is a popular concept within the sector. Understandably, the health care system is multifaceted and dynamic in nature which is why shared decision making is engrafted in the practices in the sector. The synergy that operates in health settings is fuelled by the level of interactions and communication flow among every official in the setting. For instance, every health agency will have different departments all of which collaborates together to provide the range of different health and rehabilitative services for the patients. It cannot be feasible that a single official stands to make decisions on the behalf of all without seeking the opinions of officials from the other departments. Decisions ranging from the most important and the most insignificant much be discussed and conclusions jointly reached because separate decisions by each department could jeopardize the activities of the other departments and may put the health of the patients of such health center at risk. Participation in the decision making in the health care setting could be in terms of roles played by different stakeholders e.g. such individuals such as taxpayers, community members, and/or patients all contribute directly or indirectly to decision making.

Governments’ proclamations for fostering user and public involvement are often based on expectations of improvement in the quality of care, greater responsiveness of services to patients’ needs and wishes, and more accountability on the part of providers and managers (Martin and Finn, 2011, Donovan and Coast 1996 and Calnan 1997). It is expected that citizens input always contribute to the effectiveness and efficiency of any activity because the citizens are in the best position to evaluate the services rendered to them. This is not an unsupported notion because Tenbensel (2010) identifies two broad and interrelated rationales for public involvement. The first one being mainly concerned with the democratic legitimacy of policy processes, in general, and health policy in particular. And the second rationale being more focused on the contention that public input produces better and more intelligent health policy decisions.

Blacksher, Diabel, Forest, Goold and Abelson (2012) postulated the idea that it is important for a deliberative process especially one that could potentially be adopted in the healthcare sector to have atleast the following requirements;

(i) Provide participants with balanced factual information;

(ii) Ensure that a sufficiently diverse range of potentially conflicting, minority and marginal perspectives are considered; and

(iii) Create opportunities for free and open discussion and debate within and between citizens and researchers or policy actors, or both, to challenge and test competing claims

These conditions are quite achievable in other sectors with little effort but it requires concerted efforts for it to be achieved in the healthcare sector and this is due to the following factors; cost, scale and efficiency.

As expected, healthcare is an incredibly wide sector and as a result, deliberative democracy might not be applicable as a policy statement for every aspect of healthcare. It is not a hidden fact that the health sector is a highly specialized industry where extensive training is required due to the critical nature of the task they perform. As a result, it might be unethical for everyone to have an input in how activities are conducted in the profession. If there is one industry where expert knowledge and opinion is of major importance, it is the healthcare industry. This might put the health of the patients at risk because there is the tendency for patients to seek for what is comfortable at the detriment of what is healthy. Yet, the best option for a patient’s health and wellbeing might not be necessarily the most convenient option for them. For instance, a patient with a condition that warrants receiving injection and taking drugs simultaneously may voice their opposition to injections even when that is clearly the better choice for them to make.

Public participation in health sector is commonly denoted by such terms as “community participation”, “public input”, “patient collaboration”, “patient partnership”, “shared decision-making”, “informed consent”, “user involvement”, “patient-centeredness”, “patient autonomy” etc”. All of these terms are merely pointing to the concept of deliberative democracy as regards the health sector. These terms may connote other meanings in other settings but they explain the role of healthcare practitioners to consult with each other prior to making an informed decision. Importantly, Charles and DeMaio (1993) presented a more extensive participation framework in which three dimensions of domains, roles, and levels are considered. Domains refer to the issues to be decided in which three subcategories which are; treatment of individual patients; service delivery for a defined region or a particular health facility; and macro health care policies are recognized. Essentially, there are conditions where deliberative strategies might be beneficial in the healthcare industry and there are situations it might not be applicable. According to Lehoux, Daudelin, Demers-Payette and Boivin 2009; Rychetnik, Carter, Abelson, Thornton, Barratt and Entwistle, 2013, they are best suited to resolving complex policy issues where people’s values are of central importance either because of the number of people affected or the profound impact on individuals. Deliberative methods are particularly useful for policy questions about:

(i) Situations involving clear conflicts between ethical imperatives (justice, beneficence, and respect for autonomy for example) such that the decision entails the unavoidable creation of unlucky or even unjustly treated individuals or populations; and/or

(ii) So-called ‘hybrid issues’. These are issues where the technical and normative aspects of a question are profoundly interwoven, including when there is significant technical uncertainty or normative conflict.

Levels of Participation

It is important to clarify the scope of participation in the health care sector as it tends to vary from time to time and without adequate clarification, there is the tendency to misrepresent deliberative participation when it is actually in operation. What we know about the levels of participation regarding participation is based upon the work of Arnstein who wrote extensively on the typology of citizen participation and this  was presented as an eight-rung ladder,43 where lower rungs depict “non-participation”, the middle rungs indicate “degrees of tokenistic” participation, and the upper rungs show “degrees of citizen power”, numerous researchers have suggested either simpler or more nuanced and often less critical hierarchical models of public or patient participation in health care decision-making. For instance, Finegold suggests a framework in which five degrees of participation in the ascending order of citizen/patient control is distinguished: informing, consultation, partnership, delegated power, and citizen control (Finegold, 1997).

Laws are consistently being made to facilitate and improve participation in decision making across board in many developed nations. In the United States for example, efforts to engage the public and patients in health care are rather recent. Washington State was the first state that passed legislation to promote Shared Decision Making in 2007. This served as a template which several other states eventually bought into by following the footsteps of the capital state with legislations underway (Frosch, Moulton, Wexler, Holmes-Royner, Volk and Levin, 2011). Deliberative democracy has continued to receive attention in the states implicitly and explicitly through the development of decision aids or supports has been emphasized as part of the provisions of Patient Protection and Affordable Care and the Health Care and Education Reconciliation Acts (both enacted in 2010 by the Federal Government) to reform the delivery of health care (Frosch et al, 2011). At the same time, there is a proliferation of nonprofit, for-profit, and academic organizations that are engaged in developing various decision aids to help SDM in primary care and clinical settings. In neighboring Canada, steps are also being taken in the direction of paving the way for more deliberative input in the healthcare sector. There are provincial governments responsible for planning and delivery of health care services, efforts to reform the system for greater public or community participation have been initiated through devolution of authority for decision-making from the provincial governments to regional, district, or local bodies (PMC, 1994).

References

  • Blacksher, E., Diebel, A., Forest, G., Goold, D, & Abelson, J. (2012). What is public deliberation? Hastings Center Report, 42, 14-17.
  • Calnan, M (1997). Citizens, users and health care. Eur J Public Health: 7:1–2.
  • Charles, C., DeMaio, S (1993). Lay participation in health care decision making: A conceptual framework. J Health Polit Policy Law 18:881–904.
  • Donovan, L., Coast, J (1996). Public participation in priority setting: commitment or illusion? In: Coast J, editor. Priority Setting: The Health Care Debate. Chichester: Wiley.
  • Dryzek, J (2010). Foundations and Frontiers of Deliberative Governance. Oxford: Oxford University Press.
  • Elster, J (1998). Deliberative Democracy (Cambridge Studies in the Theory of Democracy). Cambridge: Cambridge University Press.
  • Ercan, A (2014). Deliberative democracy. In: Phillips DC, editor. Encyclopedia of Educational Theory and Philosophy. Thousand Oaks, CA: SAGE Publications;214–216.
  • Finegold, B (1997). Citizen participation: a review of the issues. In: Rosen HM, Metsch JM, Levey S, editors. The Consumer and the Health Care System: Social and Managerial Perspectives. New York: Spectrum.
  • Frosch DL, Moulton BW, Wexler RM, Holmes-Rovner M, Volk RJ, Levin CA. Shared decision making in the United States: policy and implementation activity on multiple fronts. Z. Evid. Fortbild. Qual. Gesundhwes. 2011;105:305–312
  • Fishkin, J (2011). When the People Speak. Oxford: Oxford University Press.
  • Lehoux, P., Daudelin, G., Demers-Payette, O., & Boivin, A. (2009). Fostering deliberations about health innovation: What do we want to know from publics? Social Science & Medicine, 68, 2002-2009. Cancer Institute, 105, 380-386.
  • Martin, P., Finn, R (2011). Patient as team members: opportunities, challenges and paradoxes of including patients in multi-professional healthcare teams. Sociol Health Illn. 2011;33(7):1050–1065.
  • Solomon, S., & Abelson, J. (2012). Why and when should we use public deliberation? Hastings Center Report, 42, 17-20.
  • Street, J., Duszynski, K., Krawczyk, S., & Braunack-Mayer, A. (2014). The use of citizens’ juries in health policy decision-making: A systematic review. Social Science & Medicine, 109, 1-9
  • Pateman, C. (2012). Participatory democracy revisited. Perspectives on Politics, 10(1), 7–19.
  • Rychetnik, L., Carter, S.M., Abelson, J., Thornton, H., Barratt, A., Entwistle, V.A., et al. (2013). Enhancing Citizen Engagement in Cancer Screening Through Deliberative Democracy. Journal of the National Cancer Institute, 105, 380-386
  • Tenbensel, T (2010). Virtual special issue introduction: Public participation in health policy in high income countries – a review of why, who, what, which, and where? Soc Sci Med. 71:1537–1540
  • World Health Organization (1978). Declaration of Alma-Ata. International Conference on Primary Health Care, Alma-Ata, USSR; 6–12 September 1978. Geneva: World Health Organization.

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