Dignity For All

For those involved in the care of the terminally ill, the affirmation of the inherent dignity of each patient, through actions and words of benevolence, is precisely what it means to comfort the dying (Chochinov, 2002). Moreover, through the recognition of each patient being worthy of honor and esteem, regardless of what their individual life story might have been, the caregiver is imbued with the dignity rendered by their own actions.

The prison hospice program is an example of how by acknowledging the dignity of each person in death, those caring for them are also positively impacted. The program aims to help inmates die with dignity while training fellow prisoners as hospice volunteers. Its success in fostering compassion between inmates has shown that through sympathy and the willingness to share in someone else’s pain, for ourselves, we may become open to the condition of receiving (Eriksson & Fredriksson, 2003). As stated by one inmate in the program, “You go in thinking that you’re going to help somebody, and every time they end up helping you” (Leland, 2009). This program demonstrates that at the end-of-life, shared experiences of death with dignity provide reciprocal opportunities of human development for all parties involved.

SERVING LIFE

 

 

References

 

Chochinov, H. (2002). Dignity-conserving care - a new model for palliative care. JAMA, 287(17), 2253-2260.

Eriksson, K., & Fredriksson, L. (2003). The ethics of the caring conversation. Nursing Ethics, 10(2), 138-148.

Leland, J. (2009, October 18). Fellow inmates ease pain of dying in jail. The New York Times. Retrieved 

          from http://www.nytimes.com/2009/10/18/health/18hospice.html?_r=0





 

Hospice

Hospice is a model based on the philosophy of palliative care. The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of individuals and their families facing the problems associated with life-threatening illnesses, through the prevention  and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems; physical, psychosocial, and spiritual” (Chochinov, 2006, p.85). Within this definition, and the National Hospice and Palliative Care Organization's (NHPCO) Philosophy and Standards of Practice, lie all of the previously presented criteria necessary for the ethical treatment of dying patients.

NHPCO Standards of Practice and Philosophy Statement:

http://www.nhpco.org/ethical-and-position-statements/preamble-and-philosophy

References

 

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

           Clinicians, 56(84), 84-103.



Communication for Closure

As discussed in a previous blog, the dying process is often filled with challenging, ethically complex decisions. Because dying is a highly personal event, it is frequently dominated by confusion regarding preferences and choices that must be made in relation to the physical, psychological, social, and existential aspects of the dying experience. In making these decisions, terminally ill patients need options that balance the ethical obligation of respecting each patients long held beliefs, values, cultural mores, practices, and patterns of living; while ensuring that ill informed choices do not jeopardize their welfare (Fisher, 2013, p.132). The safest way to achieve Standard 3.04 Avoiding Harm, and uphold dignity, autonomy, and the aspirational principles of Beneficence; Nonmaleficence; and Justice, lies in open dialogue and communication with patients, their families, and with colleagues from various health care and other professions (Latimer, 1991). Using Standards on Human Relations; Assessment; Therapy; and Competence, as guidelines for exchanges of information, as well as for participating in a “caring conversation”, care givers can gauge the moral acceptability of various practices with patients at the end-of-life.

 

When initiating and sustaining discussion about end-of-life care, caregivers must be prepared to shepherd the patient through many of the clinical and ethical challenges that characterize this last phase of life (Quill, 2000). They have a responsibility to deal with human beings as they are. People only die once and they have no experience to draw upon (Gawande, 2010). Patients need a care team who is willing to have the hard discussions, say what they have seen, and whom will help them with what is to come (2.01 Boundaries of Competence). Fundamental to the success and integrity of both parties in the patient-professional relationship is “gentle truth-telling” - to the extent that patients require and indicate that they can tolerate (Latimer, 1991). Patients need to know about their condition and prognosis, their choices in courses of action, and the likely outcomes of these choices (Quill, 2000).  Additionally, not only do they need to know the reality of their situation, they need to have it communicated in a kind but accurate manner. Deceit, no matter how kindly motivated, leads to despair (Latimer, 1991). (3.04 Avoiding Harm) This accurate information gives patients not only control over their body and their life, by choosing their form of treatment, it gives them an opportunity to do and talk about things that are important to them (complete a will, heal family relationships, get finances in order, say their goodbyes, and prepare themselves for death). When a patient is unaware that death is approaching, these issues may be left unattended to. A constant source of anger and frustration voiced by bereaved relatives is that no one sat down and discussed the fact that their loved one was dying (Ellershaw & Ward, 2003). Standards of importance in these areas are: 9.01 Bases for Assessment, 9.02 Use of Assessment, 9.03 Informed Consent in Assessments, 9.06 Interpreting Assessment Results, 10.01a Informed Consent to Therapy, and 10.01b Anticipated Course of Therapy.

Conversations for Information

 

The primary purpose of these discussions with terminally ill patients is to determine what people want. Although the focus is on laying out facts and options, the larger part of the task is in helping people negotiate their overwhelming anxiety; “anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances” (Gawande, 2010, p19). There are many worries and real terrors; people worry that no one is listening and fear dying with unnecessary pain and suffering (Quill, 2000). Routine conversations about end-of life preferences and wishes work to normalize these discussions, educate clinicians about patient’s goals and values, and allow the patient to learn about their rights to palliative care.

Although conversations about end-of-life care are difficult to initiate, one would think clinicians would be well equipped to navigate these waters. Unfortunately, this is not always the case. Patients, their families, and clinicians, frequently avoid mentioning death or dying; even when the patient’s suffering is severe (Quill, 2000).  One factor undermining successful end-of-life discussions is; because of the availability and reverence for medical technology in health care, one does not always know when dying begins and when death is likely to occur (Gawande, 2010). There is reluctance by doctors to diagnosis dying, even when pressed, as they feel there is always something more that can be done. They have not been trained to care for dying patients and therefore feel helpless (Ellershaw & Ward, 2003). Many times, as they feel ill prepared to have a conversation on the subject of mortality, their solution is to avoid the subject altogether (Gawande, 2010).  Instead of conversations consisting of options for palliation of symptoms and end of life closure, discussions revolve around fantasies of inappropriate medical treatment they know are unlikely to work, many with the likelihood of causing debilitating side effects. (Standards: 2.01 Boundaries of Competence and 2.01b, When to Refrain and Refer, 2.04 Bases for Scientific and Professional Judgments)

 

The “breakpoint discussion" (Gawande, 2010, p.21), is a systematic series of conversations to sort out when the need arises to switch from fighting for time to fight for the other things people value: being with family, travel, whatever is important to the individual. Additionally, the notion of personal dignity many change across different stages of the illness. Latter discussions of treatment strategies may be distinctly different from those originally agreed upon. Effective communication between patients, families, and health care providers is essential to avoid moral conflicts regarding changes or termination of therapies when it becomes reasonably clear that the patient no longer needs the services; they are not likely to benefit; or they are being harmed by continuing the services (Fisher, 2013, p.317). (3.04 Avoiding Harm, 10.01b Ongoing Nature of Consent and 10.10 Terminating Therapy)

 

Conversations on Advance Care Planning are one way to increase an individual’s autonomy in the final stages of life (Gallacher, Hughes, & Kleespies, 2000). Documentation of living wills, preferences of life-sustaining medical treatment, and medical power of attorney, are attempts to determine the type of care a patient would want if they cannot speak for themselves (Last Acts, 2002, p.9). (3.10b Informed Consent) In the discussions of these preferences, an awareness of the patient’s cultural, ethnic, and religious background is critical, as these contextual issues may profoundly influence decisions (Quill, 2000). (2.01b Boundaries of Competence) Honoring terminally ill patients treatment preferences for Do Not Resuscitate (DNR), Do Not Intubate (DNI), and palliative health care goals (whether to withhold artificial feeding and fluids or to administer antibiotics), preserves an individual’s control and dignity. Although the Patient Self-Determination Act (PSDA) requires health care facilities receiving Medicare or Medicaid reimbursements to inform patients about their right to make choices about the treatment they receive and to prepare advance directives (10.01 Informed Consent to Therapy), a study of terminally ill patients found that two-thirds had no discussion with their doctors about goals for end-of life care; despite being 4 months from death (Gawande, 2010).  Furthermore, the third that did were far less likely to undergo cardiopulmonary resuscitation, be put on ventilator, or end up in an intensive care unit. Of the two–thirds in the study who enrolled in Hospice, it was shown that these patients suffered less; were physically more capable; and were better able, and for a longer period of time, to interact with others. Also, six months after death, family members were less likely to experience persistent major depression. In other words, people with substantive discussions about end-of life preferences were “far more likely to die at peace and in control of their situation and to spare their family anguish” (Gawande, 2010, p.17).

 

 Conversations for Caring

 

The first step for those close to the dying patient in broaching these conversations, is to learn to relinquish control (Jacelon & Proulx, 2004). Health care providers and families of the patient are reluctant to accept that a dying individual’s priority may be for relief of spiritual suffering, rather than technologically advanced medical care. Suffering is not solely defined by physical, or even mental pain, but by the reduction in the capacity for being able to act; which is experienced as a violation of self-integrity (Eriksson & Fredriksson, 2003). Care providers need to take the time to listen and to learn about the patient’s unique suffering, and about what is being requested by them. The patient is the initial guide to defining their problems and the range of interventions and solutions they find acceptable (Quill, 1993). One needs to learn about what is most important to each patient under the circumstances; what their concerns are about what lies ahead, how they want to spend their time as options become limited, and what kinds of trade-offs they are willing to make (Gawande, 2010

Fully understanding the depths of a patient’s concerns requires as much listening as talking. Gawande (2010, p.20), states “If you are talking more than half of the time, you are talking too much”. Many times patients themselves are reluctant to express (or are not even aware of), the real issues troubling them. Statements such as “I wish I were dead” are often expressions of anger, depression, or of simply being tired of acute medical treatment (Quill, 1993). In fact, even when operating under the Oregon Death with Dignity Act (ODDA), which permits physicians to prescribe lethal doses of medication to hasten the death of competent, terminally ill patients who voluntarily request it (Gallacher, Hughes, & Kleespies, 2000); it was found that requests of assistance in dying only rarely evolved into fully considered requests for physician assisted suicide when a thorough exploration and understanding of a patient’s experience was undertaken, and other interventions (pain control, symptom relief, hospice referral, prescribing of anti-depressant or anti-anxiety medication, consultation with a chaplain), were offered (Delorit, Ganzini, Kraemer, Lee, Nelson, & Schmidt, 2008).  
   
In these final conversations of uncovering a patient’s last wishes, the words you use matter. You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”(Gawande, 2010, p.20).  Questions also need to be clarified with statements such as “How were you hoping I could help”, “What is the worst part”, and “What is your biggest fear” (Quill, 1993, p.870). With this knowledge, care providers can act upon the decisions a patient conveys during these discussions, to ensure the focus is on the best interests and wishes of the patient (Latimer, 1991). Not only does this help to prevent the imposition of others’ values (3.06 Conflict of Interest and 2.06 Personal Problems and Conflicts), it allows information and advice to be provided on the approach that will give each patient the best chance of achieving the death they want.  More importantly, the end does not come without having a chance to say “Good-bye”, “It’s OK”, “I’m sorry”, or “I love you”.

Excellent article from The New Yorker on "Letting Go":
http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all

References 

Delorit, M., Ganzini, L., Kraemer, D.,  Lee, M., Nelson, H., & Schmidt, T. (2008). Physicians' experiences with
           the Oregon death with dignity act. New England Journal of Medicine, 342(8), 557-563.
Ellershaw, J., & Ward, C. (2003). Care if the dying patient: the last hours or days of life. BMJ, 326, 30-34.
Eriksson, K., & Fredriksson, L. (2003). The ethics of the caring conversation. Nursing Ethics, 10(2), 138-148.
Fisher, C. (2013).  Decoding the ethics code (3rd ed.). Thousand Oaks, CA: SAGE Publications, Inc.
Gallacher, F., Hughes, D., & Kleespies, P. (2000). Suicide in the medically and terminally ill: Psychological and
           ethical considerations. Journal of Clinical Psychology, 59(9), 1153-1171.
Gawande, A. (2012, August 2). Letting go. The New Yorker. Retrieved from
           http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all
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.
Last Acts (2002). Means to a better end: A report on dying in America today. Washington, DC.
Latimer, E. (1991). Caring for seriously ill and dying patients: the philosophy and ethics. Canadian Medical
           Association Journal, 144(7), 859-867.
Quill, T. (1993). Doctor, I want to die. Will you help me? Journal of the American Medical Association,
           270(7), 870-873.
Quill, T. (2000). Initiating end-of-life discussions with seriously ill patients. Journal of the American Medical
           Association, 284(19), 2502-2507.

 

 

 

An Individual Life Story

My last blog explored the ethical principles used as a framework for preserving the dignity of dying patients. The best way to achieve these aspirational goals is by acknowledging, respecting, and seeking to understand each individual's personal life story. Latimer (1991, p. 861) states, "With interested effort to know the patients fully, in all their joys and pains; pleasures and sorrows; ups and downs; highs and lows; which have given shape and form to their life and have led them through the years to their present situation, the inner resources of the patient can be tapped. Through these means, the caregiver can enter a relationship of intimacy and compassion, with encouragement and respect of the personal strength and individuality of each patient".

 

Too Soon Old

 

                                     What do you see nurses?......... What do you see?
                                     What are you thinking............. When you're looking at me?
                                     A crabby old man.................... Not very wise,
                                     Uncertain of habit................... With faraway eyes?

                                     Who dribbles his food.............. And makes no reply.
                                     When you say in a loud voice... 'I do wish you'd try!'
                                     Who seems not to notice......... The things that you do.
                                     And forever is losing................ A sock or shoe?

                                     Who, resisting or not............... Lets you do as you will,
                                     With bathing and feeding........ The long day to fill?
                                     Is that what you're thinking?.... Is that what you see?
                                     Then open your eyes, nurse...... You're not looking at me.

                                     I'll tell you who I am.................. As I sit here so still,
                                     As I do at your bidding.............. As I eat at your will.
                                     I'm a small child of Ten............. With a father and mother,
                                     Brothers and sisters.................. Who love one another.

                                     A young boy of Sixteen............. With wings on his feet..
                                     Dreaming that soon now........... A lover he'll meet.
                                     A groom soon at Twenty........... My heart gives a leap.
                                     Remembering, the vows........... That I promised to keep.

                                     At Twenty-Five, now................. I have young of my own.
                                     Who need me to guide.............. And a secure happy home.
                                     A man of Thirty......................... My young now grown fast,
                                     Bound to each other.................. With ties that should last.

                                     At Forty, my young sons............ Have grown and are gone,
                                     But my woman's beside me....... To see I don't mourn.
                                     At Fifty, once more, babies play 'round my knee,
                                     Again, we know children............ My loved one and me.

                                     Dark days are upon me............... My wife is now dead.
                                     I look at the future...................... Shudder with dread.
                                     For my young are all rearing....... Young of their own.
                                     And I think of the years............... And the love that I've known.
 

                                     I'm now an old man.................... And nature is cruel.
                                     Tis jest to make old age.............. Look like a fool.
                                     The body, it crumbles................ Grace and vigor, depart.
                                     There is now a stone.................. Where I once had a heart.
 

                                     But inside this old carcass........... A young guy still dwells,
                                     And now and again..................... My battered heart swells.
                                     I remember the joys.................... I remember the pain.
                                     And I'm loving and living............. Life over again.
 

                                     I think of the years, all too few.... Gone too fast.
                                     And accept the stark fact............ That nothing can last.
                                     So open your eyes, people.......... Open and see.
                                     Not a crabby old man......... Look closer......... See ME!!
                                      (Griffith, n.d.)

References

Griffith, D. (n.d.). Too soon old. Inspire 21.com. Retrieved  from
          http://www.inspire21.com/stories/poetrystories/TooSoonOld
Latimer, E. (1991). Caring for seriously ill and dying patients: the philosophy and ethics. Canadian Medical
          Association Journal, 144 (7), 859-867.



 

 

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.