End of Life Ethics

1. End of Life Ethics • Presented • By • Matthew J. Benorden, M.Div., BCC, CT

2. What is End of Life Ethics?

3. The Question All Patients Ask of Us In the movie, Wit (2001), Vivian Bearing is a literal, hardnosed English professor who has been diagnosed with terminal ovarian cancer. During the story, she reflects on her reactions to the cycle the cancer takes, the treatments, and significant events in her life. In a scene, she asks her nurse a question.

4. Our Responsibility

5. Objectives • Define end-of-life care. • Explain the National Association of Social Workers (NASW) code of ethics and standards for palliative and hospice care. • Critique a scenario to determine how end-of-life ethics are applied.

6. End of Life Care End of life care refers to multi-dimensional assessment and interventions provided to assist individuals and families as they approach end of life. Whether sudden or expected, the end of a person’s life is a unique experience that has a great impact on the person, his or her family system, and the family legacy.

7. End of Life Care Health care and end of life decision making crosses ethical, religious, cultural, emotional, legal, and policy areas. The complexity of issues includes aspects such as weighing risk and benefit; allocation of individual, family, and societal resources; and the recognition of changing goals of care. It concerns individuals’ deepest and most dearly held fears, values, and beliefs. Palliative and end of life issues are often delicate and controversial and require skilled, insightful interdisciplinary care.

8. Palliative Care Palliative care is an approach that improves quality of life for patients and their families facing the problems associated with life-limiting illness. This is accomplished through the prevention and relief of suffering by means of early identification and comprehensive assessment and treatment of pain and other physical, psychosocial, and spiritual problems.

9. Palliative Care …provides relief and pain and other distressing symptoms. …affirms life and regards dying as a normal process. …intends neither to hasten nor to postpone death. …integrates the psychological and spiritual aspects of patient care. …offers a support system to help the family cope during the patient’s illness and in their own bereavement. …uses a team approach to address the needs of patients and their families, including bereavement counseling, if needed. ..enhances quality of life and may also positively influence the course of illness. …is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.

10. Hospice Considered the model for quality, compassionate care for people facing life-limiting illnesses or injuries, hospice care involve a team-oriented approach to expect medical care, aggressive pain and symptoms management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is also provided to the patient’s loved ones. At the center is the belief that each of us has the right to live and die free of pain, with dignity and that our families should receive the necessary support to allow us to do so. Hospice focuses on caring, not curing.

11. Bereavement Bereavement has been defined by several experts as the objective situation of a person who has experienced the loss of a significant person or attachment figure.

12. Grief Grief is a reaction to loss, and, for each person who has sustained a loss, is an individual experience. Certain losses affect entire group systems such as families, communities, cultures, and countries. Grief affects people from every standpoint, including physical, emotional, behavioral, cognitive, and spiritual.

13. Preamble to the Code of Ethics The primary focus of the social work profession is to enhance human well-being and help meet the basic human needs of all people, with particular attention to the needs and empowerment of people who are vulnerable, oppressed, and living in poverty. A historic and defining feature of social work is the profession’s dual focus on individual well-being in a social context and the well-being of society. Fundamental to social work is attention to the environmental forces that create, contribute to, and address problems in living.

14. Preamble to the Code of Ethics The mission of the social work profession is rooted in a set of core values. These core values, embraced by social workers throughout the profession’s history, are the foundation of social work’s unique purpose and perspective: Service, social justice, dignity and worth of the person, importance of human relationships, integrity, and competence.

15. Ethical Principles The following broad ethical principles are based on social work’s core values of service, social justice, dignity and worth of the person, importance of human relationships, integrity, and competence. These principles set forth ideals to which all social workers should aspire.

16. Ethical Principles Value: Service Ethical Principle: Social workers’ primary goal is to help people in need and to address social problems. Value: Social Justice Ethical Principle: Social workers challenge social injustice. Value: Dignity and Worth of the Person Ethical Principle: Social workers respect the inherent dignity and worth of the person.

17. Ethical Principles Value: Importance of Human Relationships Ethical Principle: Social workers recognize the central importance of human relationships. Value: Integrity Ethical Principle: Social workers behave in a trustworthy manner. Value: Competence Ethical Principle: Social workers practice within their areas of competence and develop and enhance their professional expertise.

18. NASW Standards for Palliative & End of Life Care Standard 1: Ethics and Values The values, ethics, and standards of both the profession and contemporary bioethics shall guide the social workers practicing palliative and end of life care. Standard 2: Knowledge Social workers in palliative and end of life care shall demonstrate a working knowledge of the theoretical and biopsychosocial factors essential to effectively practice with clients and professionals.

19. NASW Standards for Palliative & End of Life Care Standard 3: Assessment Social workers shall assess clients and include comprehensive information to develop interventions and treatment planning. Standard 4: Intervention/Treatment Planning Social workers shall incorporate assessments in developing and implementing intervention plans that enhance the clients’ abilities and decisions in palliative and end of life care.

20. NASW Standards for Palliative and End of Life Care Standard 5: Attitude/Self-Awareness Social workers in palliative and end of life care shall demonstrate an attitude of compassion and sensitivity to clients, respecting clients’ rights to self-determination and dignity. Social workers shall be aware of their own beliefs, values, and feelings and how their personal self may influence their practice. Standard 6: Empowerment and Advocacy The social worker shall advocate for the needs, decisions, and rights of clients in palliative and end of life care. The social worker shall engage in social and political action that seeks to ensure that people have equal access to resources to meet their biopsychosocial needs in palliative and end of life care.

21. NASW Standards for Palliative & End of Life Care Standard 7: Documentation Social workers shall document all practice with clients in either the client records or in the medical chart. These may be written or electronic records. Standard 8: Interdisciplinary Teamwork Social workers should be part of an interdisciplinary effort the comprehensive delivery of palliative and end of life services. Social workers shall strive to collaborate with team members and advocate for clients’ needs with objectivity and respect to reinforce relationships with providers who have cared for the patient along the continuum of illness.

22. NASW Standards for Palliative & End of Life Care Standard 9: Cultural Competence Social workers shall have, and shall continue to develop, specialized knowledge and understanding about history, tradition, values, and family systems as they relate to palliative and end of life care within different groups. Social workers shall be knowledgeably about, and act in accordance with the NASW Standards for Cultural Competence in Social Work Practice.

23. NASW Standards for Palliative & End of Life Care Standard 10: Continuing Education Social workers shall assume personal responsibility for continued professional development in according with the NASW Standards for Continuing Professional Education and state requirements. Standard 11: Supervision, Leadership, and Training Social workers with expertise in palliative and end of life care should lead educational, supervisory, administrative, and research efforts with individuals, groups, and organizations.

24. Biomedical Ethical Principles AUTONOMY—The patient’s right to self-determination. Application: Social workers should encourage dialogue about end of life care and use of advance directives so that autonomy can be preserved even if patient’s decision-making capacity is lost.

25. Biomedical Ethical Principles BENEFICENCE—Doing what is good or beneficial for the patient. Application: Social workers should do what they believe is in the patient’s best interest, but this action must not conflict with the patient’s right to self-determination.

26. Biomedical Ethical Principles NONMALEFICENCE—Avoidance of infliction of intentional harm. Application: Many medical staff view participation in physician-assisted suicide as a violation of this principle.

27. Biomedical Ethical Principles JUSTICE—Fairness in the delivery of healthcare. Application: Social workers should advocate for treatment of their dying patients which is just and without discrimination.

28. Biomedical Ethical Principles FIDELITY—Truthfulness and faithfulness in delivering healthcare. Application: Social workers should be truthful to their dying patients regarding the diagnosis and prognosis and advocate for their dying patients’ wishes even when those patients’ decision-making capacity has been lost.

29. SCENARIO—Part A An 87-year old, widow has been having severe abdomen pain. Her name is Mary. One of her daughters took her to the local emergency room late one night. Mary had been given pain medication, but the physician decided to admit her in the hospital for observation. The next day, a technician came to Mary’s room to get her and take her to another part of the hospital to have a scan completed. Mary’s daughter had stayed with her the entire night and accompanied her with the technician. After the scan was finished, the technician was propelling Mary in the wheelchair where suddenly, Mary became unresponsive. Her lungs and heart had stopped working. What should be done next? Why? What ethical principles might be used in your decision?

30. SCENARIO—Part B Dorothy had been revived, however, she had admitted to the ICU. She has become uncommunicative, is awake, but is very lethargic. The scan’s results show Dorothy has a large cancerous mass on her abdomen. The oncologist who has been assigned to Dorothy’s care suggests surgery to remove the mass. Shawna, who had accompanied Dorothy to the hospital, advocates no surgery as her mom said she wants to join her dad in heaven. Furthermore, Dorothy is tired of the aches and pains of this life. Shawna cares for her mother daily as she lives with her. Theresa, Shawna’s half-sister, has arrived at the hospital. When hearing the news, Theresa, vehemently states the surgery will be performed. As the social worker, what do you do? Why? What ethical principles are used?

31. SCENARIO—Part C Dorothy is lying in the ICU hospital bed. Paula, another sister, arrives at the hospital. She lives eight hours away. Once hearing of her mother’s condition, she jumped in the car and drove nonstop to see her mother. Dorothy and Paula have been estranged for several years. When Paula sees her mom, she becomes very upset and distraught. She accuses her sisters of “doping up her mom so she doesn’t talk.” Furthermore, she wants her mother to awake and talk with her. Paula wants to make sure Dorothy has accepted Jesus Christ as her Lord and Savior, so she can go to heaven when she dies. Paula believes if her mother does not accept Jesus, she will go to hell. Again, what should you do? Why? What ethical principles are used?

32. SCENARIO—Part D Dorothy has been revived several times in the ICU. Each time she is revived, Dorothy’s condition has worsened. The medical staff has informed the family that nothing else, medically, can be done. Dorothy does not respond to any verbal or tactile stimuli. You receive a referral to speak with the family. What do you say? Do? Why? What ethical principles are used?

33. SCENARIO—Part E Several family members and friends have “camped out” in one of the ICU’s waiting rooms for two days after Dorothy’s initial unresponsive. Her eight children are present. Six are daughters—and they are all nurses. The family has openly discussed suing the hospital. They replay the thought that something must have happened. No one just becomes unresponsive coming back from a scan. The family is also very loud with wailing and crying at times. Dorothy is the family’s matriarch. The hospital staff has told them several times to “quiet down.” The news of Dorothy’s death arrives at the waiting room. The family has become even louder now. The hospital staff tells them, again, to “quiet down” or security will be called. They refuse. Security is called. Security fails in “quieting down” the family. Furthermore, a public relations person is also called to “help” the situation. This also fails as the family reiterates suing the hospital. You have been called to the waiting area. So, what do you do? Say? Why? What ethical principles are used?