The Social Workers Role in End of Life Care

The Social Workers Role in End-of-Life Care
Elmira College
Brandon Saylor

INTRO
Social workers are central health care professionals in working with patients, families, practitioners, healthcare agents, and surrogates in the health system, and in the communication and conflict resolution process that is integral to health care decision making. Their knowledge set and experience make them an essential member of end-of-life care. However, current health care practices fail to effectively utilize the social worker as a patient advocate in dealing with the multitude of patient needs that arise during, before, and after hospice care (Bomba, Morrissey, and Leven, 2011).
With the technological transformation of medicine in recent decades, it is now possible to extend the life of terminally ill patients, allowing individuals to live in severely disabled states, and prolonging the dying process. Such an ability to extend life raises ethical issues about quality of life, individual autonomy, and the phenomenology of pain and suffering (Dickinson, 2005; Morrissey 2011; McCormick, 2011). In a study on the experience of social workers working with hospice patients with unmet needs at the end of life, the most frequently cited barrier to addressing and overcoming unmet needs was social and cultural issues related to death and dying (Arnold et al., 2006). Ethical problems are not random or isolated failures of the system but often fundamental products of that system (Dickinson, 2005).
This essay will focus on the role of the social worker in end-of-life care, most notably hospice care, and the effect the social worker can have on improving quality of life for the patients and their families. I have chosen to focus primarily on social workers due to their role in assessing the psychosocial needs in hospice settings, and their usefulness in educating, treating, and acting as a patient advocate for individuals and their families during end-of-life care. I begin with an overview of ethical issues, primarily self-determination and a phenomenology of pain and suffering. From there I move the recent legislative measures enacted in the state of New York which focus on end-of-life care to show that social workers possess the experience and skill set to help individuals prepare and deal with the anxiety of death.
SELF-DETERMINATION AND THE RIGHT-TO-DIE MOVEMENT “Self-determination is a primary ethical principle underlying social work practice; and social workers in health care settings use it as a guiding principle in decision making with their patients” (McCormick, 2011). In the 1970s, the notion of life-sustaining technology and medicine became a topic of debate after the prolonged death of Karen Anne Quinlan. The 21 year old was severely injured in a motor vehicle accident and was unable to breathe without medical intervention. Karen’s parents requested that she be taken off the ventilator, however, her physician refused and the case was taken to court. Although the courts ruled in favor of Karen’s parents, the hospital refused to remove the breathing tube. Instead, they slowly weaned her off over a period of months, and she continued to live for another 10 years in a vegetative state (McCormick, 2011). This case, and others like it, led to the passage of the Patient Self-Determination Act in 1990. Its passage has reinforced the autonomy principle, which is now used as the rationale for full disclosure of diagnosis and prognosis to a patient, with the expectation they patients will work with physicians to make informed decisions (Wesley, 1996). “Individual autonomy is an idea that is generally understood to refer to the capacity to be one 's own person, to live one 's life according to reasons and motives that are taken as one 's own and not the product of manipulative or distorting external forces” (Christman, 2011). The principle of respect for autonomy implies that one should be free from coercion in deciding to act, in the practice of health care; a person’s autonomy is exercised through the process of obtaining informed consent (Ascension Health website). In January of 2006, following a survey of 1,500 adults, the Pew Research Center reported that 84% of Americans supported right-to-die laws that give patients the right to decide whether they want to be kept alive through medical treatment, up from 79% in 1990 (McCormick, 2011). Advocates of the right-to-die movement fear what some call the technological imperative: the belief that doctors are obligated to use whatever medical treatment and technology available to prolong life. Humphry and Clement (2000) cited patient concerns, such as “loss of control, fear of being a burden, abandonment, loss of dignity, and cost of care [as] … reasons for the consistently overwhelming support for an assisted death when the person is terminally ill” (p. 51). The determination centers on an assessment of the patient’s quality of life and the chances for recovery to an acceptable quality of life (McCormick, 2011). Terminally ill patients seek autonomy for many of the same reason that healthy individuals do. It is human nature to want to be a self-governing agent. It is the responsibility of the social worker to make sure that patients feel that they have a voice in the medical decision making process.
Returning to Arnold’s study (2006), the authors noted that at the time of admission to hospice care 42% of patients stated that their suffering steamed from their inability to participate in activities that make life enjoyable leading and loss of autonomy. They also found that this trend did not improve much over time. These feelings ultimately lead to decreased quality of life. The evidence from these studies indicates that a leading factor in the quality of life during hospice care can be traced to the patients’ level of autonomy and their desire for self-determination. Increased awareness of this issue has come since the passage of the Patient Self-Determination Act; however, studies (Arnold etal., 2006; Reamer, 1998; and Humphry and Clement, 2000) reveal that anxiety and suffering of patients in end-of-life care can be traced to loss of autonomy.
PHENOMENOLOGY OF PAIN AND SUFFERING Phenomenology is a philosophical notion that focuses on the structure of experience, but its literal definition is the study of phenomena as distinct from that of the nature of being (Smith, 2008). It is an approach that focuses on the study of consciousness and the objects of direct experience. In her article, Phenomenology of Pain and suffering at the End of Life: A Humanistic Perspective in Gerontological Health and Social Work (2011), Mary Beth Morrissey examines the intrinsic nature of pain and suffering, and develops a phenomenological account of lived experiences of pain and suffering (p. 14). She believes that a stronger focus by social workers on a palliative ethic of care is necessary due to the magnitude of the public health problem arising from unrelieved pain and suffering. It is the role of the social worker to foster conversations with patients and their families about the values of treatment preferences, and empower patients with serious illness to exercise their right to refuse excessively burdensome and aggressive medical interventions that provide little to no benefit and may increase patient suffering (p. 15).
According to The National Consensus Project for Quality Palliative Care (2009), the goals of palliative care are:
… to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing opportunities for personal growth. (p. 6)
These goals are consistent with the values of the social work profession (Morrissey, 2011). Morrissey believes that the current definition and cultural understanding of pain and suffering are too simplistic, and that recent policymaking focuses on a utilitarian theory which leaves little room for cultural differences (p.16).
“A comprehensive assessment of pain is multidimensional and extends beyond the purely physical and sensory, encompassing the cognitive, emotional, interpersonal, social, cultural, physiological, and spiritual aspects of what some call ‘total pain’ (Morrissey, 2011, p. 18). In other words, the sensation of pain is not simply a chemical reaction brought about by a physical stimulus. Each individual feels pain in a different way, based upon their history and current mental state regarding the above mentioned experiences.
According to Morrissey, pain and suffering are too often used as interchangeable thoughts. When in reality they are separate values. Pain can bring about human suffering, but it does not have to be present for an individual to suffer. The social worker must be able to distinguish between the two in order to properly treat their patient and his or her significant others. Even older adults who may be burdened with intolerable pain and suffering in living and dying may find hope and promise in meaning driven therapies that give comfort and care to the whole person (Morrissey, 2011, p. 32).
Morrissey urges social workers and other health care professionals to aid in a social revolution, by altering current conceptions of death and dying and focusing on the individuals’ situation as it relates directly to them. She encourages individuals to talk about their feeling on death. Previous research suggests that family members of hospice patients identified social issues as a factor that can contribute to late referrals to hospice, specifically “the American youth-orientated culture, which has difficulty confronting death” (Wyatt, Ogle and Given, 2000). The sense of denial about death and dying in our culture is a barrier to effective social action aimed at improving end-of-life care (Arnold et al., 2006).
Morrissey encourages patient advocates to listen to how the dying process is changing the individual’s mindset. We have become a culture obsessed with straight line diagnoses; you have this, and thus we can give you this, and perform this procedure to fix you. This form of treatment focuses on ends, rather than means, ripping away a person’s humanity and personal identity. Doctors may be able to lessen the physiological effects of pain, but without proper counseling and actual human intervention, it will be very difficult to lessen the amount of suffering brought about by the dying process.
In providing humanistic, person-centered, and preference-sensitive care in working with such vulnerable persons and his or her family members, health care agents or surrogates, caregivers, and other members of the health care team, the social worker can be most effective in having conversations about what the seriously ill and dying person may be experiencing, what care and comfort are appropriate to relieve the patient’s pain and suffering, and what other goals of care need to be evaluated to assure that a commitment of nonabandonment to the patient is met. (Morrissey, 2011, p. 33
NEW YORK LEGISLATION AND END-OF-LIFE CARE
There are four main sources of legislation in the state of New York focused end-of-life care: Family Health Care Decision Act (FHCDA), Palliative Care Information Act (PCIA), Medical Orders for Life-Sustaining Treatment (MOLST) and Physician Orders for Life-Sustaining Treatment. Important not only for social workers, but all individuals involved with end-of-life care (patients, health care agents or surrogates, caregivers, and other members of the health care team), are the legal rights of individuals. As discussed above, Western culture has deaminized conversations about death, making it taboo and thus, leading to ignorance and ultimately diminished quality of life for terminal patents. Government regulation has been put into place in order to bridge the gap between social isolation and communal acceptance, in order to help all citizens, healthy or ill, in preparing for the unknown.
The Family Health Care Decision Act (FHCDA) is a New York state law that enables a patient’s family member to make health care decisions when the patient is unable to do so for themselves. The FHCDA gives health care decision making authority to surrogates for patients who have lost the ability to make their own informed decisions, and have not previously appointed a health care proxy or have not left any indication of their wishes (Bomba, Morrissey, and Leven, 2011). Before this law was created, it was incredibly difficult to make health care decisions for a family member if they had not made the proper arrangements. “Under the FHCDA, decisions for those who have lost capacity can be made by the person highest in the following priority list, once a determination has been made that the patient lacks decisional capacity: Mental Hygiene Law Article 81 court appointed guardian; spouse or domestic partner; adult son or daughter; parent; adult sibling; or close friend” (Bomba, Morrissey, and Leven, 2011, p. 58). Although social workers are not part of the formal assessment process of patient’s best interest, they do play a vital role in supporting the surrogates, physicians, and other health professionals in correctly determining the patient’s best wishes.
The New York State Medical Orders for life sustaining treatments (MOLST) is designed to improve the quality of care received by seriously ill patients at the end of life and is based on effective communication, documentation on a universal form, and a promise from the provider to honor the patient’s wishes (Bomba, Morrissey, and Leven, 2011). “Patient preferences for care at the end of life are not consistently followed despite the presence of advanced directives completed in accordance with state law” (Bomba, Morrissey, and Leven, 2011, p. 67). Qualified and trained social workers are ideally suited to participate in discussions leading to completion of the MOLST form in all health care settings (Morrissey, 2011).
The implementation of these laws does not guarantee that an individual’s beliefs will be honored in times of need. Traditional advanced directives, like the living will, apply to future circumstances and are unable to account for every possibility. Because they require an in-depth interpretation of ones wishes, it is vital that patients communicate their feelings on end-of-life care (Bomba, Morrissey, and Leven, 2011). Further complications arise when attempting to define terminal or irreversible conditions and accounting for the different perspectives that physicians, agents, and family bring to the table. Social workers have the professional and ethical responsibility to initiate these conversations between all involved parties. A study published in 2008 revealed that end-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. In contrast, aggressive care is associated with inferior patient quality of life and longer periods of grief with family and friends (Bomba, Morrissey, and Leven, 2011).
The U.S. healthcare system is in for an eye opening realization, as it is estimated that by 2030, 20% of the American population (almost 70 million people) will be over the age of 65. A national poll conducted by the Pew Research Center in 2005 indicated that only 29% of Americans have completed advanced directives, even though 95% of the country was aware of the need to do so (Bomba, Morrissey, and Leven, 2011). This may be due to the fact that many Western cultures view death as a medical failure rather than a final chapter of life (Morrissey, 2011). The role of the social worker is not to aid the patient in dying, but to help them live the rest of their life as comfortably, and with as much joy, as possible.
Following the FHCDA was the New York Palliative Care Information Act (PCIA), which provides that a terminally ill patient’s attending health care practitioner must offer to supply the patient with sufficient information concerning palliative and end-of-life care (Bomba, Morrissey, and Leven, 2011). It is important to mention that this information will not be provided to individuals who do not want it. Social workers will serve an important function in supporting attending practitioners in providing counseling to their patients’. The PCIA brings up a few interesting ethical issues. The first relates to cultural differences and openness to this type of information, and the second issue relates to the health care providers reluctance to disclose information.
CULTURAL INFLUENCES
Most people in the United States and other Western countries view self-determination and autonomy as an inalienable right as a self-governing individual. However, not all cultures share this belief (Newman, Davidhizar and Fordham, 2006). Giger and Davidhizar define culture as a “pattern of behavioral responses that develops over time as a result of imprinting the mind through social and religious structures and intellectual and artistic manifestations (2004). This definition of culture can be related to the theory of ethical relativism, which states that morality is relative to, or defined by, one’s culture (Pozgar, 2010). Therefore, the definition of right or wrong in one society could be completely opposite that of a neighboring society. Although, most philosophers discount the notion of ethical relativism based on Plato’s argument that it is self-refuting, it does not change the fact that values and virtues differ from culture to culture (at least on the surface).
Social workers and other individuals on the hospice team must be aware of cultural differences in relation to autonomy verses family values. It is essential for healthcare professional to not make the assumption that common belief and values are held by all patients, but to assess each individual, and properly determine their personal belief system through open ended questioning (Newman, Davidhizar and Fordham, 2006). In a study of four ethnic groups, Blackhall, Murphy, Frank, Michel and Azen (1995) note that Korean and Mexican individuals believe in a family centered model of decision making rather than a patient centered model. In addition, while autonomy may be empowering in the U.S., it can instill feelings of isolation, burdensome, and lose of hope for many Korean individuals. Ultimately, hospice team members must be aware that differences not only exist from country to country, but also exist within social groups.
UNMET NEEDS AT END OF LIFE In Arnold, Artin, Griffith, Person, and Graham study on hospice social worker experience, researchers found that the social workers perceived patients to experience a wide variety of unmet needs (2006). As stated previously, the most common unmet need was the patient’s decreased ability to participate in activities that make life enjoyable. The question was left open ended and allowed for individuality to each patient, in that no criteria was place on what makes life enjoyable. Other factors that stood out as unmet needs were anxiety, loss of autonomy, and uncontrollable pain. When asked why they believed theses needs were unmet, patient related psychosocial issues and family concerns as the two most popular answers. The majority of social workers in the study stated that patients feared being a burden and had difficulty not be as independent as they wanted to be. These findings correlate with previously mentioned social values of autonomy and self-determination. As patients lose the ability to take care of themselves they are viewed by society as a burden, and useless to the greater good. Morrissey (2011) discussed these current trends in society, stating that a change in social standards and perceptions of the dying individual as a burden to others would aid in decreasing patient suffering and increase quality of life for terminally ill patients.
The second most popular answer, family issues, was most often tied to long-standing family conflicts (Arnold et al., 2006). Family issues ranged from individuals not taking care of themselves by focusing only on the dying person, and issues of anger and resentment. Barriers to addressing the unmet needs included, but were not limited to, societal/cultural issues regarding illness and death, and again, family issues (p. 73). Patients viewed end-of-life care as “giving up”. The issue of late referrals was also a major barrier associated with the social worker being unable to make the necessary psychological connections with patients before they pass. The interventions used to address the unmet need(s) included counseling interventions such as: life review, relaxation training, active listening, guided imagery, and brief therapy. Outside referrals was the second most popular intervention, and included education on resources available in the community such as churches and church services. Finally, the intervention outcomes were measured as: positive outcome-psychosocial (67%); positive outcome-not specific (21%); positive outcome- medical (6%); and no or little change (6%) (p. 73). The results of the study show that patients in hospice care are presenting with unmet needs, and although some needs and issues may be address, patients and their families continue to suffer during the hospice process. The authors states that a lack of statistical data on best practice in hospice social working and their inability to hold a large scale survey hinders their ability to make recommendations for future practice. A notable result in the study was the patient’s inability to participate in activities that make life enjoyable and loss of autonomy as prominent at time of admission (42-45%), and remained a problem even after intervention. Positive results from the study show a large decrease in uncontrolled pain (from 22% stating it “very often” to 1%) after intervention, and a decrease in family stress (67% to 27%) after intervention. These findings correlate with Morrissey (2011) study and her observation that social fear of the dying process leads to decreased quality of life, and Bomba, Morrissey, and Leven’s (2011) findings that social and cultural views act as a base for legislative action. Arnold et al. also states the need to increase the education and training of both bachelor students and college graduates working in the field. The authors believe that social work bachelor and masters programs fail to address the legal and ethical issues of hospice care, and also feel that post-graduation training only skims the surface. They call for improvements in social work literature and research, and the need for larger organizations to create a social work philosophy of ethics.
DISCUSSION
Social workers are the healthcare professionals who are involved in the assessment of patient and family members’ divergent and multiple needs at the end of life. They possess a unique set of skills that allow for the development of a therapeutic relationship with patients and families during the initial period of assessment at the time of admission into hospice (Arnold et al., 2006). Social workers are patient advocates, assisting with needs that vary from emotional suffering and pain management to family relationships. They play a vital role in end-of-life care that is focused on improving quality of life, comfort, and increased education of prognosis and future options. The ethical issues embedded in social work practice and end-of-life care focus on personal autonomy and self-determination; shaping the cultural stigma on death and dying; and helping patients to maintain their sense of humanity.
CONCLUSION
One of the reason that I decided to focus on this topic was to better understand the role my mother plays as a hospice social worker. I have been surrounded by phenomenological experiences of death and dying by listen to stories that she would tell me. I had the opportunity to go to memorial services and calling hours for some of her past patients. Although these experiences brought about feelings of sadness, they were also fundamental in molding my personal ideals of death. I have learned not to fear death, but to respect its power and feeling of finitude. It allows me to embrace the world in which I live in and has molded my personal philosophy.
I hope that the class is able to walk away from our presentation with an increased awareness of advanced directives and the importance of having some sort of legally binding document expressing medical wishes. Our culture has become a prisoner to fear, and let personal pride get in the way of what matters most, quality of life. The only way to change social perceptions is by breaking the barrier of silence and eradicating ignorance.

Works Cited
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Cited: Arnold, E., Artin, K., Griffith, D., Person, J., &amp; Graham K. (2006). Unmet Needs at the End of Life: Perceptions of Hospices Social workers McCormick, A. J. (2011). Self-Determination, the Right to Die, and Culture: A Literature Review. Morrissey, M. (2011). Phenomenology of pain and Suffering at the End of Life: A Humanistic Perspective in Gerontological Health and Social Work National Consensus project for Quality Palliative Care. (2009). Clinical Practice Guidelines for Quality Care (2nd ed.) Pozgar, George D. 2010. Legal and Ethical Issues for Health Professionals, 2nd Edition, Boston: Jones and Bartlett Publishers Reamer, F. G. (1998). Ethical Standards in Social Work: A Critical Review of the NASW Code of Ethics Smith, D. (2008). Phenomenology. The Stanford Encyclopedia of Philosophy (Fall 2011 Edition). Wesley, C. A. (1996). Social Work and End-Of-Life Decisions: Self-Determination and the Common Good Wyatt, G. K., Ogle, K. S., &amp; Given, B. A. (2000). Access to Hospice: A Perspective from the bereaved Humphry, D., &amp; Clement, M. (2000). Freedom to Die: People, Politics, and the Right-To-Die Movement. New York: St. Martin’s Griffin.