Ethical Aspects of Individualised Care
5.6 Towards an Integrative Care Ethics: Sketching the Terrain
The two scenarios suggest that focusing on individuals, with too little regard for their family and community situation, is limiting. Whilst a holistic focus on the needs of care recipients—their biopsychosocial functioning—is important, there needs also to be a wider and deeper engagement with their ‘social location’. The perspective of
‘integrative bioethics’ is particularly illuminating here. Sodeke [1] writes:
Integrative bioethics is the science of life struggles, survival, and flourishing, particularly the environment of the United States where the seeds of race, ethnicity, gender, class, cul- ture and spirituality have flourished (for good or ill). Essential to the public’s realization of a humanly lived life is good health and health behaviours […] We surmised that an integra- tive bioethical blending of historical, practical, and ethical considerations of issues, behav- iours and actions is necessary to ensure defensible and appropriate responses, social policy and law.
The content of this is open for discussion; however, our engagement with the scenarios of Mrs. Gordon and Ms. Dixon and with literature relating to integrative ethics suggest a tentative matrix along the following lines (Table 5.1):
Three A’s of bioethics have been suggested as academia, advocacy and activism [28]. There is much in bioethics ‘academia’ that can throw light on the two scenar- ios, most particularly insights from the four principles of biomedical ethics [15], from virtue ethics [29] and from care ethics (e.g. [18]) in particular.
We have illustrated how the traditional view of the principle of respect for autonomy is limited and how a relational autonomy perspective provides a broader view. The three other principles, from Beauchamp and Childress [15], have poten- tial to expand our analysis, particularly as we consider ethical issues that relate to the family in caregiving and public health. Those principles are beneficence (do good) and non-maleficence (do no harm) which come together as the principle of utility. Here we need to weigh the benefits and harms of actions and omissions for all concerned—family and caregivers alike. The principle of justice is the fourth principle and reminds us of issues of fairness and equality in the distribution of resources. We have labelled this as ‘social justice’ as this has wider implications and a more adequate response to oppression and historical and social injustice.
It can be argued that ‘care’ is relevant to all three levels in the matrix and, indeed, Joan Tronto considers care as essentially social and political. She writes:
To recognize the value of care calls into question the structure of values in our society. Care is not a parochial concern of women, a type of secondary moral question, or the work of the least well off in society. Care is a central concern of human life. It is time that we began to change our political and social institutions to reflect this truth ([18], p. 180).
The care we have in mind in relation to the two scenarios involves attentiveness which underpins the virtue of empathy and requires listening and moral imagination to truly engage with the predicament of care recipients. The philosopher Iris Murdoch [30] writes of looking with a ‘just and loving eye’, and this, we think, captures the essence of empathy. This involves a commitment to understand the perspectives of care recipients, family members and communities and the motiva- tion to never abandon. It is our view that the value of non-abandonment [20] needs to be highlighted when there is too little appreciation of the lived experience of care recipients and, perhaps, when there is fear either of death (as in the scenario of Mrs.
Gordon) or of medical failure (as in the scenario of the Dixon/Grant family).
The values of sustainability and solidarity are included on the matrix to empha- sise the importance of taking a longer view of caregiving and public health
Table 5.1 An integrative ethics of care
Levels Individual Family Community
Values Relational autonomy
Care Empathy
Utility Equity
Non-abandonment
Social justice Sustainability Solidarity
Focus of activity Advocacy Empowerment Activism
activities. Sustainability relates primarily to community at a local and global level.
The United Nations’ Sustainable Development Goals [31] has 17 critical aspira- tions. Three that are most relevant to the scenario of Ms. Dixon are good health and well-being (‘promote health lives and promote well-being for all at all ages), gender equality (‘achieve gender equality and empower all women and girls’) and reduced inequalities (‘within and among countries’). There is much to be gained from cross- cultural engagement, particularly in the areas of end-of-life care and in responding to challenges that impact on health and well-being such as obesity.
Regarding the value of solidarity, this has a long history and dates back to the nineteenth-century France. Auguste Comte argued that solidarity was the antidote to increasing atomisation and individualisation of society and this needed to have less priority than collective well-being and social concerns [25]. The Nuffield Council report on the value of solidarity suggests that much discussion of solidarity in bioethics focuses on one of two meanings: as a descriptive term referring to the perceived reality of social cohesion in a particular context or group, for example, in terms of shared goals and bonds, and as a prescriptive terms which call for more social cohesion and support whereby solidarity takes on a political role. An under- standing of solidarity suggested in the Nuffield Council support is as follows:
[…] solidarity signifies shared practices reflecting a collective commitment to carry ‘costs’
(financial, social, emotional or otherwise) to assist others […] a practice and not merely as an inner sentiment or an abstract value. As such it requires actions. Motivations, feelings such as empathy etc. are not sufficient to satisfy this understanding of solidarity, unless they manifest themselves in acts.
This resonates with the three A’s of bioethics referred to above and suggests both the impetus to support political activism to remedy injustice, to promote the empow- erment of the family by providing information and enabling to them to avail of community resources and also to engage in an informed advocacy. Advocacy, in this context, is using scientific evidence to guide individualised care. When the science is incomplete, caution should be exercised. Activism emphasises vigorous action and is consistent with the overall value of utility bringing together principles of beneficence and non-maleficence which underpin direct caregiving and public health activities.
Conclusion
The social-cultural context in which individualised care is provided must be explored if positive and sustained health outcomes at the levels of the individual, family or community are expected. Health can be described as a relationship, a dynamic interplay, between the physical, social, psychological and spiritual ele- ments that create the well-being of the individual and/or group in their physical and social environment [32]. It is a dynamic interface between one’s self and one’s ‘social location’.
Individualised care, whilst focusing on individuals, is unlikely to be effective if the individual is isolated from the group, be it from a family or a community.
Hence our argument is for an integrative model of care. The group has an
underestimated influence on the health of the individual. People seldom are healthy or ill in isolation [33]. With the advent of the Genome Project, person- alised medicine can now target care based on the specific genomic mapping of individuals. Epidemiology provides the scientific foundation from which evi- dence-based care is delivered and from which individualised care must also rely.
There are many ethical lenses through which to view individualised care and the two scenarios. We have tentatively sketched the terrain for an integrative model of care underpinned by an integrative ethics. We derived insights from the four principles of biomedical ethics, from care and feminist ethics and from the public health ethics literature. We also suggested the relevance of virtue ethics in relation to the ethical qualities of the caregiver [29]. The study of public health ethics requires the practitioner to effectively conceptualise and operate with an appreciation of the tension of individual rights and collective interest [34].
We cannot claim to have developed a complete account of ethics in relation to an integrative model of care. We do, however, hope that we have raised some questions and stimulated reflection about the adequacy of individualised care as ordinarily understood.
References
1. Sodeke SO. Tuskegee University experience challenges conventional wisdom: is integrative bioethics practice the new ethics for the public’s health? J Health Care Poor Underserved.
2012;23(4 Suppl):15–33.
2. Department of Health. Personalised care planning: information sheet 1. 2011. https://www.
gov.uk/government/uploads/system/uploads/attachment_data/file/215946/dh_124048.pdf.
Accessed 25 Feb 2018.
3. My Home Life. Relationship-centred care. 2017. http://myhomelife.org.uk/good-practice/
relationship-centred-care/. Accessed 28 Mar 2018.
4. Oregan Health Authority (undated) Patient Centered Services (PCS). See https://www.oregan.
gov/OHA/PH/HEALTHYPEOPLEFAMILIES/WIC/Pages/orwl/aspx.
5. Australian Government. What is consumer directed care? Information for home care package providers. Department of Social Services. https://www.myagedcare.gov.au/. Accessed 28 Mar 2018.
6. Royal College of Nursing. What person-centred care means: first steps for health care assistants.
http://rcnhca.org.uk/sample-page/what-person-centred-care-means/. Accessed 28 Mar 2018.
7. Hutchison JS. Scandals in health-care: their impact on health policy and nursing. Nurs Inq.
2015;23(1):32–41.
8. Katz RV, Warren RC. The search for the legacy of the USPHS syphilis study at Tuskegee.
Lanham: Lexington; 2011.
9. Frauman AC, Skelly AH. Evolution of the nursing process. Clin Excell Nurse Pract.
1999;3(4):238–44.
10. Greenhalgh T. How to implement evidence-based healthcare. Wiley. 2017. http://www.wiley.
com/WileyCDA/WileyTitle/productCd-1119238528.html. Accessed 28 Mar 2018.
11. Suhonen R, Valimaki M, Katajisto J, et al. Provision of individualized care improves hospital patient outcomes: an explanatory model using LISREL. Int J Nurs Stud. 2007;44(2):197–207.
12. Health Foundation. Person-centred care made simple. 2014. http://www.health.org.uk/sites/
health/files/PersonCentredCareMadeSimple.pdf. Accessed 28 Mar 2018.
13. Heerema E. Thomas Kitwood’s person-centred care for dementia. 2017. https://www.very- well.com/what-is-person-centered-care-in-dementia-97737. Accessed 28 Mar 2018.
14. Anderson D. What is a person? Consortium on Cognitive Science Instruction. 2000. http://
www.mind.ilstu.edu/curriculum/what_is_a_person/what_is_a_person.php. Accessed 25 Feb 2018.
15. Beauchamp TL, Childress JF. Principles of biomedical ethics. 7th ed. New York: Oxford University Press; 2013.
16. The Belmont report. The National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research. 1979. https://videocast.nih.gov/pdf/ohrp_appendix_
belmont_report_vol_2.pdf. Accessed 28 Mar 2018.
17. Mackenzie C, Stoljar N. Relational autonomy: feminist perspectives on autonomy, agency and the social self. New York: Oxford University Press; 2000. p. 35–51.
18. Tronto JC. Moral boundaries: a political argument for an ethic of care. New York: Routledge;
1993.
19. Gallagher A. Care ethics and nursing practice. In: Scott A, editor. Key concepts and issues in nursing ethics. Cham: Springer; 2017. p. 55–68.
20. Martinsen EH. Caring in medicine: from a gentleman’s care to ‘a more sophisticated sense of human independence’. In: Olthuis G, Kohlen H, Keier J, editors. Moral boundaries redrawn:
the significance of Joan Tronto’s argument for political theory, professional ethics and care as practice. Leuven: Peeters; 2014. p. 113–32.
21. Nuffield Council on Bioethics. Public health: ethical issues. 2007. http://nuffieldbioethics.org/
project/public-health. Accessed 28 Mar 2018.
22. Boseley S. Global cost of obesity-related illness to hit $1.2tn a year from 2015. The Guardian newspaper. 2017. https://www.theguardian.com/society/2017/oct/10/treating-obesity-related- illness-will-cost-12tn-a-year-from-2025-experts-warn. Accessed 28 Mar 2018.
23. Centers for Disease Control and Prevention Adult Obesity Facts, 2017. See https://www.cdc.
gov/obesity/data/adult.html.
24. Wikler D. Who should be blamed for being sick? In: Bayer R, Gostin LO, Jennings B, et al., editors. Public health ethics: theory, policy and practice. New York: Oxford University Press;
2007.
25. Nuffield Council on Bioethics. Solidarity: reflections on an emerging concept in bioethics.
2007. http://nuffieldbioethics.org/project/solidarity. Accessed 28 Mar 2018.
26. Collins PH. Black feminist thought: knowledge, consciousness and the politics of empower- ment. New York: Routledge; 1991.
27. Friedman M. Autonomy, social disruption and women. In: Mackenzie C, Stoljar N, edi- tors. Relational autonomy: feminist perspectives on autonomy, agency and the social self.
New York: Oxford University Press; 2000. p. 35–51.
28. Arbeit M. What are we ready to risk? Academia, advocacy, and activism. 2015. http://
sexedtransforms.blogspot.com/2015/05/what-are-we-ready-to-risk-academia.html. Accessed 25 Feb 2018.
29. Banks SJ, Gallagher A. Ethics in professional life: virtues for health and social care.
Basingstoke: Palgrave; 2009.
30. Murdoch I. The sovereignty of good. Abingdon: Routledge; 1971.
31. United Nations. Sustainable development goals. 2016. https://sustainabledevelopment.un.org/
sdgs. Accessed 28 Mar 2018.
32. Warren RC. Towards new models. Section introduction. In: De La Cancela V, Lau Chin J, Jenkins YM, editors. Community health psychology, empowerment for diverse communities.
New York: Routledge; 1998. p. 219.
33. Warren RC. The social context of faith and health. In: Warren RC, HCJ L, Zulfiqar AA, editors.
The health behavioural change imperative: theoretical, educational and practice dimensions.
New York: Kluwer Academic/Plenum; 2002.
34. Bayer R, Beauchamp DE. Public health ethics: new ethics for the public’s health. Oxford:
Oxford University Press; 2007.