As they age, many people are afraid that they might become a burden to their families and friends.[1] In fact, fear of being a burden is one of the most frequently cited reasons for individuals who request physician aid in dying / physician-assisted suicide.[2] Why is this fear so prevalent, and what are the issues underlying this concern?
I argue that perceptions of individual autonomy, dependency, and dignity all contribute to the fear of becoming a burden. However, this fear is misplaced. Common conceptions of these values should be re-framed in order to have a more positive perception of aging.
In much of the Western world, autonomy is the king of values. To say someone is autonomous generally means that the person has “liberty, freedom, self-rule, self-determination and independence.”[3] The ideal state of being involves maintaining control of one’s own life and making choices based on individual conceptions of the good. This individual choice of what to pursue and how to get there is one of the most fiercely protected ideas in Western society.[4] The drawbacks of this obsession with doing things for ourselves is that patients may feel that without autonomy, they themselves are not worthy of receiving care. Alasdair MacIntyre argues that human identity is largely corporeal: our bodies help make us who we are.[5] It is unsurprising, then, that a major bodily change, especially one that produces dependency, would influence one’s identity in a myriad of ways. People who are terminally ill sometimes feel that without their autonomy, they “have no more value and feelings.”[6]
The counterbalance of autonomy is human dependency. Dependency recognizes that no man is an island; in order to be our best selves, we need other people to guide and shape us. Though it is often missed, dependency and autonomy are two sides of the same coin. The autonomy-dependency dialectic is part of the human condition. Despite our best efforts, we are social animals who generally cannot flourish in isolation.[7] The connotation of “dependency” can be positive, but when used in terms of health care for adults, this is not usually the case. Patients who defined themselves as independent may have trouble accepting the new identity of a dependent person.[8] They may reject this new identity as “shameful” and incongruent with their former selves.[9] People may feel they are no longer the person their families loved and thus not worthy of care. This focus on autonomy masks how we are all interdependent persons. Becoming ill or growing old simply make us more aware of this reality.
Dignity is another value that significantly influences on how people feel about themselves. In multiple studies, many patients stated that a life without dignity is not worth living.[10] When worried about being a burden to families, people are often concerned about family members having to help with unpleasant (or undignified in the sense that they are non-desirable) caregiver tasks. Patients often feel shame in needing help with tasks that are typically associated with children: assistance going to the bathroom, being fed, etc. Accepting help with “undignified” labor sometimes feeds the patient’s perception of being a burden. This situation can be especially difficult when a role-reversal takes place – e.g. the child takes over doing these tasks for the parent. This new dependent role is difficult for some people to accept: “Patients who had high-quality informal care and strong family connections and who had been the central figures in their families were particularly concerned about being a burden.”[11] Conversely, some people view this role-reversal positively and symmetrically: parents took care of children when they couldn’t take care of themselves, so now adult children get to care for their parents.[12] Some families see a loving reciprocity when they care for the elderly or infirm: as I was taken care of, so I shall take care of you. Many people feel honored and enjoy caring for loved ones while they are ill or dying.[13]
Values Re-framed
There are ways to see benefits during the end of one’s life using the same values of autonomy, dependency, and dignity. Reexamining perceptions of these values can be beneficial for both patients and families.[14] In fact, when it comes to lessening feeling like a burden, the mental perspective of patients may be even more important than physical independence.[15] Dependency is not inherently undignified, and there are several goods that come with recognizing one’s dependent status, particularly at the end of life.
Autonomy has a dialectical relationship with dependency; one does not exist without the other. Because people primarily define autonomy as being in control and exercising choice, it is easy to forget the needy side of the coin. It is by belonging to a community that autonomy derives any power in the first place. In order to be autonomous, a person must be able not just to choose, but to choose well and make choices that are beneficial.[16] When someone is afraid of being a burden to others, we already know that person is concerned with how his actions impact those around him. With this mindset, it may be easier to frame acceptance of care as an autonomous choice that benefits both the giver and the receiver. Individuals can never be truly independent or exist in a social vacuum. The self constructs its identity largely based on interpersonal relationships and personal roles in one or many communities. We never belong only to ourselves.[17] Accepting one’s intrinsic dependent status can help ease feelings of being a burden.[18] Taking care of vulnerable loved ones offers benefits to caregivers as well. Though very few would call taking care of a dependent loved one easy, caregivers grow deeper into virtue and strength in the experience of caregiving. In her qualitative study involving end-of-life caregivers, Hughes found that caregivers discovered “courage, determination, acceptance, humor, and empathy” and were often surprised at these feelings.[19] In terms of interpersonal relationships, dependency “can be a source of courage, love, and hope… .”[20]
There is no single way to be dignified. Daniel Sulmasy describes two distinct conceptions of dignity, attributed and intrinsic.[21] Something has attributed dignity because of the way others decide to label that particular thing, and the dignified thing is of some use or relation to the valuer.[22] Patients who feel they lack dignity because they can no longer fulfil their previous roles or because they rely on a caretaker are examples of attributed dignity. In contrast to attributed dignity, intrinsic dignity is not earned or bestowed. One has intrinsic dignity “simply because one is a member of the human natural kind.”[23] Intrinsic value is absolute and does not have anything to do with abilities, roles, or usefulness. Unfortunately, clarifying the distinction between different types of dignity does not resolve the issue of people feeling undignified. Simply being told one is using a word incorrectly does not take away the uncomfortable feeling people may get by being dependent on another; in cases such as these, the person’s perception of dignity is incommensurate to his actual dignity.[24]
Rather, the solution can be found in appropriate practices that demonstrate to the patient that she is still dignified, no matter her care needs. Caregivers should model behavior that shows the ill person that he is still respected; for example, helping a patient maintain physical appearance standards by shaving or commemorating important events such as anniversaries. These can be personal events (weddings) or professional (retirement or being injured in combat). The practice of dignified caregiving will go much further than explaining why someone is thinking the wrong way about being dependent. In order to impact feelings of being a burden, people need to recognize the good in receiving care and get used to the idea that they do not need to do anything to be valuable. Re-framing deeply embedded views about autonomy, dependency, and dignity will be a long and difficult process, but doing so could result in a decreased fear of growing older.
[1] Rodriguez-Prat et al, 2016, p. 12; Waterworth & Jorgensen, 2010, p. 201; Hardwig, 1997, p. 36
[2] Chochinov et al, 2007, p. 464
[3] Van Brussel, 2014, p. 176
[4] Levin, 2014, p. 6
[5] MacIntyre, 1999, p. 8
[6] Waterworth & Jorgensen, 2010, p. 205
[7] Lee & George, 2008, p. 189; Kissane, 2012, p. 1503
[8] Chochinov et al, 2002, p. 438
[9] Van Brussel, 2014, p. 188; Esbensen et al, 2012, p. 141
[10] Chochinov et al, 2002, p. 441; Rodriguez-Prat et al, 2016, p. 9
[11] Dees et al, 2011, p. 730
[12] Esbensen et al, 2012, p. 143
[13] Hughes, 2015, p. 161
[14] Kissane, 2012, p. 1503
[15] Chochinov et al, 2007, p. 469
[16] Levin, 2014, p. 6; Lee & George, 2008, p. 187
[17] Van Brussel, 2014, p. 177
[18] Waterworth & Jorgensen, 2010, p. 205
[19] Hughes, 2015, p. 164
[20] Cobb, 2016, p. 33
[21] Sulmasy, 2006, p. 72
[22] Sulmasy, 2006, p. 73
[23] Sulmasy, 2006, p. 79
[24] Lee & George, 2008, p. 174
References
Callahan, D. (1993). Cramming for your finals: Make death a part of life. Commonwealth,
120(13): 11-15.
Chochinov, H., Hack, T., McClement, S., Kristjanson, L., and Harlos, M. (2002). Dignity in the
terminally ill: A developing empirical model. Social Science & Medicine, 54:433-443.
Chochinov, H., Kristjanson, L., Hack, T., Hassard, T., McClement S., and Harlos, M. (2007).
Burden to others and the terminally ill. Journal of Pain and Symptom Management 34(5):
463-471. doi:10.1016/j.jpainsymman.2006.12.012.
Cobb, A. (2016). Acknowledged dependence and the virtues of perinatal hospice. The Journal of
Medicine & Philosophy 41(1): 25-40. doi:10.1093/jmp/jhv032.
Dees, M., Vernooij-Dassen, M., Dekkers, W., Vissers, K., and van Weel, C. (2011). ‘Unbearable
suffering’: A qualitative study on the perspectives of patients who request assistance in
dying. Journal of Medical Ethics, 37(12): 727-734. doi: 10.1136/jme.2011.045492.
Esbensen, B., Thome, B., and Thomsen, T. (2012). Dependency in elderly people newly
diagnosed with cancer - a mixed-method study. European Journal of Oncology Nursing,
16: 137-144. doi:10.1016/j.ejon.2011.04.011.
Hardwig, J. (1997). Is there a duty to die? The Hastings Center Report, 27(2): 34-42.
Hughes, M. (2015). A strengths perspective on caregiving at the end-of-life. Australian Social
Work, 68(2): 156-168. http://dx.doi.org/10.1080/0312407X.2014.910677.
Kissane, D. (2012). The relief of existential suffering. Archives of Internal Medicine, 172(19):
1501-1505. doi:10.1001/archinternmed.2012.3633.
Lee, P. and George, R. (2008). The nature and basis of human dignity. Ratio Juris, 21(2): 173- 193.
Levin, Y. (2014). Taking the long way: Disciplines of the soul are the basis of a liberal society.
First Things. Retrieved from: https://www.firstthings.com/article/2014/10/taking-the-long-way.
MacIntyre, A. (1999). Dependent rational animals: Why human beings need the virtues.
Chicago, IL: Open Court Publishing Company.
Rodriguez-Prat, A., Monforte-Royo, C., Porta-Sales, J., Escribano, X., and Balaguer, A. (2016).
Patient perspectives of dignity, autonomy and control at the end of life: Systematic
review and meta-ethnography. PLoS ONE, 11(3): 1-18. doi:10.1371/journal.pone.0151435.
Van Brussel, L. (2014). Autonomy and dignity: A discussion on contingency and dominance.
Health Care Analysis, 22: 174-191. doi:10.1007/s10728-012-0217-0.
Waterworth, S., and Jorgensen D. (2010). It’s not just about heart failure - voices of older people
in transition to dependence and death. Health and Social Care in the Community,
18(2):199-207. doi:10.1111/j.1365-2524.2009.00892.x.
I argue that perceptions of individual autonomy, dependency, and dignity all contribute to the fear of becoming a burden. However, this fear is misplaced. Common conceptions of these values should be re-framed in order to have a more positive perception of aging.
In much of the Western world, autonomy is the king of values. To say someone is autonomous generally means that the person has “liberty, freedom, self-rule, self-determination and independence.”[3] The ideal state of being involves maintaining control of one’s own life and making choices based on individual conceptions of the good. This individual choice of what to pursue and how to get there is one of the most fiercely protected ideas in Western society.[4] The drawbacks of this obsession with doing things for ourselves is that patients may feel that without autonomy, they themselves are not worthy of receiving care. Alasdair MacIntyre argues that human identity is largely corporeal: our bodies help make us who we are.[5] It is unsurprising, then, that a major bodily change, especially one that produces dependency, would influence one’s identity in a myriad of ways. People who are terminally ill sometimes feel that without their autonomy, they “have no more value and feelings.”[6]
The counterbalance of autonomy is human dependency. Dependency recognizes that no man is an island; in order to be our best selves, we need other people to guide and shape us. Though it is often missed, dependency and autonomy are two sides of the same coin. The autonomy-dependency dialectic is part of the human condition. Despite our best efforts, we are social animals who generally cannot flourish in isolation.[7] The connotation of “dependency” can be positive, but when used in terms of health care for adults, this is not usually the case. Patients who defined themselves as independent may have trouble accepting the new identity of a dependent person.[8] They may reject this new identity as “shameful” and incongruent with their former selves.[9] People may feel they are no longer the person their families loved and thus not worthy of care. This focus on autonomy masks how we are all interdependent persons. Becoming ill or growing old simply make us more aware of this reality.
Dignity is another value that significantly influences on how people feel about themselves. In multiple studies, many patients stated that a life without dignity is not worth living.[10] When worried about being a burden to families, people are often concerned about family members having to help with unpleasant (or undignified in the sense that they are non-desirable) caregiver tasks. Patients often feel shame in needing help with tasks that are typically associated with children: assistance going to the bathroom, being fed, etc. Accepting help with “undignified” labor sometimes feeds the patient’s perception of being a burden. This situation can be especially difficult when a role-reversal takes place – e.g. the child takes over doing these tasks for the parent. This new dependent role is difficult for some people to accept: “Patients who had high-quality informal care and strong family connections and who had been the central figures in their families were particularly concerned about being a burden.”[11] Conversely, some people view this role-reversal positively and symmetrically: parents took care of children when they couldn’t take care of themselves, so now adult children get to care for their parents.[12] Some families see a loving reciprocity when they care for the elderly or infirm: as I was taken care of, so I shall take care of you. Many people feel honored and enjoy caring for loved ones while they are ill or dying.[13]
Values Re-framed
There are ways to see benefits during the end of one’s life using the same values of autonomy, dependency, and dignity. Reexamining perceptions of these values can be beneficial for both patients and families.[14] In fact, when it comes to lessening feeling like a burden, the mental perspective of patients may be even more important than physical independence.[15] Dependency is not inherently undignified, and there are several goods that come with recognizing one’s dependent status, particularly at the end of life.
Autonomy has a dialectical relationship with dependency; one does not exist without the other. Because people primarily define autonomy as being in control and exercising choice, it is easy to forget the needy side of the coin. It is by belonging to a community that autonomy derives any power in the first place. In order to be autonomous, a person must be able not just to choose, but to choose well and make choices that are beneficial.[16] When someone is afraid of being a burden to others, we already know that person is concerned with how his actions impact those around him. With this mindset, it may be easier to frame acceptance of care as an autonomous choice that benefits both the giver and the receiver. Individuals can never be truly independent or exist in a social vacuum. The self constructs its identity largely based on interpersonal relationships and personal roles in one or many communities. We never belong only to ourselves.[17] Accepting one’s intrinsic dependent status can help ease feelings of being a burden.[18] Taking care of vulnerable loved ones offers benefits to caregivers as well. Though very few would call taking care of a dependent loved one easy, caregivers grow deeper into virtue and strength in the experience of caregiving. In her qualitative study involving end-of-life caregivers, Hughes found that caregivers discovered “courage, determination, acceptance, humor, and empathy” and were often surprised at these feelings.[19] In terms of interpersonal relationships, dependency “can be a source of courage, love, and hope… .”[20]
There is no single way to be dignified. Daniel Sulmasy describes two distinct conceptions of dignity, attributed and intrinsic.[21] Something has attributed dignity because of the way others decide to label that particular thing, and the dignified thing is of some use or relation to the valuer.[22] Patients who feel they lack dignity because they can no longer fulfil their previous roles or because they rely on a caretaker are examples of attributed dignity. In contrast to attributed dignity, intrinsic dignity is not earned or bestowed. One has intrinsic dignity “simply because one is a member of the human natural kind.”[23] Intrinsic value is absolute and does not have anything to do with abilities, roles, or usefulness. Unfortunately, clarifying the distinction between different types of dignity does not resolve the issue of people feeling undignified. Simply being told one is using a word incorrectly does not take away the uncomfortable feeling people may get by being dependent on another; in cases such as these, the person’s perception of dignity is incommensurate to his actual dignity.[24]
Rather, the solution can be found in appropriate practices that demonstrate to the patient that she is still dignified, no matter her care needs. Caregivers should model behavior that shows the ill person that he is still respected; for example, helping a patient maintain physical appearance standards by shaving or commemorating important events such as anniversaries. These can be personal events (weddings) or professional (retirement or being injured in combat). The practice of dignified caregiving will go much further than explaining why someone is thinking the wrong way about being dependent. In order to impact feelings of being a burden, people need to recognize the good in receiving care and get used to the idea that they do not need to do anything to be valuable. Re-framing deeply embedded views about autonomy, dependency, and dignity will be a long and difficult process, but doing so could result in a decreased fear of growing older.
[1] Rodriguez-Prat et al, 2016, p. 12; Waterworth & Jorgensen, 2010, p. 201; Hardwig, 1997, p. 36
[2] Chochinov et al, 2007, p. 464
[3] Van Brussel, 2014, p. 176
[4] Levin, 2014, p. 6
[5] MacIntyre, 1999, p. 8
[6] Waterworth & Jorgensen, 2010, p. 205
[7] Lee & George, 2008, p. 189; Kissane, 2012, p. 1503
[8] Chochinov et al, 2002, p. 438
[9] Van Brussel, 2014, p. 188; Esbensen et al, 2012, p. 141
[10] Chochinov et al, 2002, p. 441; Rodriguez-Prat et al, 2016, p. 9
[11] Dees et al, 2011, p. 730
[12] Esbensen et al, 2012, p. 143
[13] Hughes, 2015, p. 161
[14] Kissane, 2012, p. 1503
[15] Chochinov et al, 2007, p. 469
[16] Levin, 2014, p. 6; Lee & George, 2008, p. 187
[17] Van Brussel, 2014, p. 177
[18] Waterworth & Jorgensen, 2010, p. 205
[19] Hughes, 2015, p. 164
[20] Cobb, 2016, p. 33
[21] Sulmasy, 2006, p. 72
[22] Sulmasy, 2006, p. 73
[23] Sulmasy, 2006, p. 79
[24] Lee & George, 2008, p. 174
References
Callahan, D. (1993). Cramming for your finals: Make death a part of life. Commonwealth,
120(13): 11-15.
Chochinov, H., Hack, T., McClement, S., Kristjanson, L., and Harlos, M. (2002). Dignity in the
terminally ill: A developing empirical model. Social Science & Medicine, 54:433-443.
Chochinov, H., Kristjanson, L., Hack, T., Hassard, T., McClement S., and Harlos, M. (2007).
Burden to others and the terminally ill. Journal of Pain and Symptom Management 34(5):
463-471. doi:10.1016/j.jpainsymman.2006.12.012.
Cobb, A. (2016). Acknowledged dependence and the virtues of perinatal hospice. The Journal of
Medicine & Philosophy 41(1): 25-40. doi:10.1093/jmp/jhv032.
Dees, M., Vernooij-Dassen, M., Dekkers, W., Vissers, K., and van Weel, C. (2011). ‘Unbearable
suffering’: A qualitative study on the perspectives of patients who request assistance in
dying. Journal of Medical Ethics, 37(12): 727-734. doi: 10.1136/jme.2011.045492.
Esbensen, B., Thome, B., and Thomsen, T. (2012). Dependency in elderly people newly
diagnosed with cancer - a mixed-method study. European Journal of Oncology Nursing,
16: 137-144. doi:10.1016/j.ejon.2011.04.011.
Hardwig, J. (1997). Is there a duty to die? The Hastings Center Report, 27(2): 34-42.
Hughes, M. (2015). A strengths perspective on caregiving at the end-of-life. Australian Social
Work, 68(2): 156-168. http://dx.doi.org/10.1080/0312407X.2014.910677.
Kissane, D. (2012). The relief of existential suffering. Archives of Internal Medicine, 172(19):
1501-1505. doi:10.1001/archinternmed.2012.3633.
Lee, P. and George, R. (2008). The nature and basis of human dignity. Ratio Juris, 21(2): 173- 193.
Levin, Y. (2014). Taking the long way: Disciplines of the soul are the basis of a liberal society.
First Things. Retrieved from: https://www.firstthings.com/article/2014/10/taking-the-long-way.
MacIntyre, A. (1999). Dependent rational animals: Why human beings need the virtues.
Chicago, IL: Open Court Publishing Company.
Rodriguez-Prat, A., Monforte-Royo, C., Porta-Sales, J., Escribano, X., and Balaguer, A. (2016).
Patient perspectives of dignity, autonomy and control at the end of life: Systematic
review and meta-ethnography. PLoS ONE, 11(3): 1-18. doi:10.1371/journal.pone.0151435.
Van Brussel, L. (2014). Autonomy and dignity: A discussion on contingency and dominance.
Health Care Analysis, 22: 174-191. doi:10.1007/s10728-012-0217-0.
Waterworth, S., and Jorgensen D. (2010). It’s not just about heart failure - voices of older people
in transition to dependence and death. Health and Social Care in the Community,
18(2):199-207. doi:10.1111/j.1365-2524.2009.00892.x.
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