Ethical Principals of Dignity

Dying patients confront complex and unique challenges that threaten their physical, emotional, and spiritual integrity (Christakis, Clipp, McIntyre, McNeilly, Steinhauser, & Tulsky, 2000). Although dying is part of the human condition, dying poorly ought not to be (Chochinov, 2006). According to the Institute of Medicine, a good death is one that is “free from avoidable distress and suffering for the patient, family and caregivers; in general accord with the patient’s and family’s wishes; and reasonably consistent with clinical, cultural, and ethical standards” (Chochinov, 2006, p.85). Palliative care, which is based on these tenets, places a priority on intensive physical and psychospiritual care for patients whose prognosis is limited; it is not simply medically or health related (Latimer, 1991). Its basic philosophy of helping patients die with dignity (the quality of being worthy of esteem or respect), is reflected in a much deeper moral principle of positive care that “honors and protects those who are dying, and conveys by word and action, that dignity resides in all people”(Chochinov, 2006, p.92).

Although the preservation of basic dignity (the intrinsic worth of each individual’s life story which no one can take away), is a clear goal of palliative care, what is less clear is the value each patient is likely to ascribe to its personal components (Albers, DeVet, Onwuteaka-Philipsen, Pasman, & Rurup, 2011). Since no two people share the same life story and personal values, individuals are likely to attribute their own unique meaning or importance as to what comprises the aspects of personal dignity. Chochinov (2002, p.2253), states that “In the end, individuality and dignity may be the same thing. It ends up being what you see as dignity for yourself”. Items from the Patient Dignity Inventory (PDI) that are considered to influence an individual sense of personal dignity at the end of life are:
 

1.      Physical Aspects - such as not being able to independently manage bodily functions or to carry out tasks of daily routines and living, and the experiencing of distressing physical symptoms.

2.      Psychological Aspects - such as feeling depressed or anxious or not being able to think clearly.

3.      Social Aspects - such as feeling you are a burden to others; not being treated with respect or understanding; feeling your privacy has been reduced.

4.      Existential Aspects - such as feeling you do not have control over your live; not feeling like who you were; feeling life no longer has meaning or purpose; not feeling worthwhile or valued.

                   (Albers et al., 2011)
 

These elements of each patient’s sense of personal dignity are uniquely tied to an individual’s self-esteem and perceptions of being respected by others (Albers et al.,2011). Because it is not possible to develop a universal “best way to die” that honors and upholds dignity for all, it is in the realm of  supporting the external sources of dignity where those working with terminally ill patients can have the greatest impact (Jacelon & Proulx, 2004 ).The key to a palliative mode of treatment is to center on the patient as an individual, while having care take place within the framework of four ethical principles: beneficence, nonmaleficence, justice, and autonomy (Latimer, 1991).
 

Beneficence

 

This principle of “to do or promote good” (Latimer, 1991, p.863), obliges one not only to relieve suffering but to also enhance the patient’s quality of life whenever possible. Additionally, the compassionate care of both patients and family in all spheres; physical, psychosocial, and spiritual, should “adhere to standards and entail rigorous practice and evaluation” (Latimer, 1991, p.863). A caring team must acknowledge the personal hopes and dreams of dying patients, do everything possible to help patients realize them, and encourage patients to reach beyond their situation to maintain hope. Expressing caring concern through verbal and nonverbal interactions to communicate compassion and a sense of integrity and respect for the patient, is also required.  

Nonmaleficence

The concept of “one ought not to inflict evil or harm” (Latimer, 1991, p.863), is embodied in this principle. It is violated when unnecessary physical or psychological pain or suffering is caused.

Justice

Justice deals with fairness - what is deserved by all people (Latimer, 1991). It calls for the allocation of the fair share of health care goods and services, energy, time, facilities, professional efforts, and financial capital to a population of dying people who are not always seen as worthy of these resources.

Autonomy

 

This principle is one of the cornerstones of ethical professional practice in palliative care (Latimer, 1991). It rests on the need to regard patients as unique people with a right to sovereignty in decision-making. Autonomy acknowledges that one’s decisions are uniquely one’s own; they are based on individual beliefs and values; and they may be contrary to what is advised or deemed wise by others in a given situation. Respect for autonomy is particularly necessary in the care of dying patients due to the fact that in order to experience meaning and dignity in death, dying patients must have a voice to choose the circumstances of their death according to what matters most to them (Jacelon & Proulx, 2004). Without this, the opportunity for the experience of dying with dignity may be lost.

References

 

Albers, E., DeVet, HCW., Onwuteaka-Philipson, B., Pasman, H., & Rurup, M. (2011). Analysis of the construct 

          of dignity and content validity of the patient dignity inventory. Health and Quality of Life Outcomes, (45).

          Retrieved from http://www.hqlo.com/content/9/1/45

Christakis, N., Clipp, E., McIntyre, L., McNeilly, M., Steinhauser, K., & Tulsky, J. (2000).  Factors considered 

          important at the end of life by patients, family, physicians, and other care providers. American Medical

         Association, 284(19), 2476-2482.

Chochinov, H. (2006). Dying, dignity, and new horizons in palliative end-of-life care. CA Cancer Journal for

         Clinicians, 56, 84-103.

Jacelon, C., & Proulx, K. (2004). Dying with dignity: the good patient versus the good death. American Journal

         of Hospice and Palliative Medicine, 21, 116-120

Latimer, E. (1991). Caring for seriously ill and dying patients: the philosophy and ethics. Canadian Medical

         Association Journal, 144(7), 859-867

           

 



Dignity in Dying

When people find out that I want to work with Hospice and dying patients I hear all types of responses such as “That must be depressing” or “I could never do that”. It is difficult for many people to understand how I do not view this work as morbid or painful but rather as an honor to be part of the last stage of an individual’s life journey.  I feel that each person has their unique life story and regardless of the joy or pain that each tale holds; at the end of life every individual is deserving of having their personal narrative acknowledged in recognition of their inherent human worth. In other words, my purpose in being involved in this vocation is to help facilitate a sense of dignity in dying with each patient I work with.

The purpose of this blog is an attempt to explain what dignity in dying (or “a good death”) means and to examine the ethical principals involved in working towards this goal with the terminally ill. I will look at the primary ethical consideration of respecting the dignity and worth of all people, and the external factors that influence dignity will be examined as frameworks for providing quality end-of-life care. The importance of communication as a requirement for maintaining a “caring conversation” in an ethical context is another topic I plan to address. Additionally, the philosophy of palliative care and the goals of Hospice as an approach to meet the medical, psychosocial, and spiritual needs of patients will be presented.

Through this blog I hope to show that the ethical aspiration of providing a sense of dignity to terminally ill patients at the end-of-life provides a climate for them to maintain their sense of themselves as an individual and to come to terms with their impending death (Jacelon & Proulx). More importantly, dying with dignity allows others to perceive a dying person to be as fully human as they are. This serves as a powerful reminder that life has the potential to be meaningful under all conditions: work, joy, suffering, and death. “Morally and spiritually, the insistent claim to dying with dignity points to something in humans that is genuinely transcendent, something that reflects our freedom to call into question all social roles and to say out loud that we are more than our frailty, role performance, or buying power”(Jacelon & Proulx, 2004, p.117). For all those involved in the experience of a “good death”, the opportunity is presented to realize what that “more” is; not only for the patient, but for themselves.

 

References

Jacelon, C. & Proulx, K. (2004). Dying with dignity: The good patient versus the good death.
             American Journal of Hospice and Palliative Medicine, 21(2), 116-120.