Case Study: Chronic Care and End of Life II Glenise McKenzie 2010
Focus for this case: Application of an Ethical Decision-Making Model (with cultural considerations) Your assignment has two sections for a total of 50 Points: Copy of the Jonsen Ethical Decision-Making Model (pdf file below). Also in box format attached at the end of the case study. http://www.norman-rha.mb.ca/documents/ethicsframework_000.pdf Part 1. Apply the questions within the four quadrants of the Jonsen Ethical Decision- Making Model to the case study that is attached (Ellen and George). a. Write a brief and concise synthesis of your findings in relation to each of the four ethical areas as presented in this case. Include consideration of each of the four ethical areas (quadrants): Medical Considerations (include list of care options) 5 Points Patient Preferences 5 Points Quality of Life 5 Points Contextual Features 5 Points (worth 20 out of total 25 Points). b. Reflect on your beliefs about dementia and end of life decision making. What are your reactions to this case scenario? Include your thoughts on how your beliefs might impact your practice as a nurse caring for older adults and their families. (worth 5 of the total 25 points) Part 1 = Possible Points = 25 2
Part 2: What if the family in the story was of a different cultural background? 1. Pick one of the following cultural groups (assume that George and Ellen are both from the same cultural group and that both have strong ties with this cultural group) a. Mexican American b. Native American c. Vietnamese d. Black/ African American 2. Explore the health beliefs, religious backgrounds, treatment preferences and EOL care preferences for this cultural group (utilize references supplied at the end of this assignment for help in locating this information). 3. Address the following (based on the cultural background you chose): a. Identify additional ethical considerations for decision making (look back at the four quadrants and related questions) that you will need to explore with a family with this cultural background 10 Points b. Discuss how you would modify a plan of care to provide culturally relevant care for a family with this cultural background who were facing the same issues as George and Ellen (dementia care planning and end of life decisions)? (i.e. apply what you learned about this cultural group to how you would approach the issues presented in the case scenario) 15 Points Part 2 - MAXIMUM length 2 pages single spaced 12 Font. Part 2 = Possible Points = 25 **TOTAL OF 3 single-spaced (12 Font) pages to cover both questions Part 1 + Part 2 = Total of 50 Possible Points. 3
Helpful resources for this assignment: Part 1: End of Life: An Ethical Overview - Pages 20-37 http://www.ahc.umn.edu/img/assets/26104/end_of_life.pdf Decision Making in Older Adults with Dementia (Review from Chronic I) http://www.hartfordign.org/publications/trythis/issue_d9.pdf From your theory reading assignments available on SAKAI Forbes, S. Bern-Klug, M., Gessert, C. (2000). "End-of-life decision making for nursing home residents with dementia." Journal of Nursing Scholarship, 32(3), pp. 251-258. Harvath, T., et al., (2006). "Dilemmas encountered by hospice workers when patients wish to hasten death, Journal of Hospice and Palliative Nursing Vol.8(4), pp. 200-209. Schwarz (2009). Stopping Eating and Drinking. AJN Vol. 109, No. 9. [Download.pdf] Framework for Ethical Decision-Making based on Jonsen s Model The Framework for Ethical Decision- is a process which facilitates a systematic and thorough examination of a situation. It encourages the incorporation of new or additional information as it is introduced to the review. This activity is reflected in the circular nature of the framework. Copy of the framework (pdf file below). Also in box format attached to case study. http://www.norman-rha.mb.ca/documents/ethicsframework_000.pdf The four boxes surrounding the framework contain questions that will assist in constructing a summary of the facts that must be considered when carrying out an ethical analysis. They are intended to facilitate understanding of the ethical complexities around decision-making in primarily clinical situations. Part II: Resources Culturally Sensitive Dementia Care (pdf): Specific information by ethnicity is included: www.alz.org/resources/diversity/downloads/gen_edu-10steps.pdf Stanford site: http://www.stanford.edu/group/ethnoger/index.html - Find the ETHNIC SPECIFIC MODULES (listed on left side of website) that address populations of interest to you and consider how this information can be of use to you in your practice settings (and for this assignment!). Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (2002, 782 pp.) Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, Editors, Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care (reference the specific mental health section pgs) http://www.nap.edu/books/030908265x/html/ ETHNOGERIATRICS AND CULTURAL COMPETENCE FOR NURSING PRACTICE by Helen McBride, PhD, RN. Available at: http://consultgerirn.org/topics/ethnogeriatrics_and_cultural_competence_for_nursing_ practice/want_to_know_more 4
George and Ellen Protagonist: Shawna Williams is a 47-year-old woman who has been a nursing home nurse for many years. She is very compassionate. She lives 6 hours away from own parents. Her mother is caring for her father who has dementia that has progressed to an advanced stage. As she heads into work on the evening shift she feels a sense of guilt that she cannot do the same care for her own parents that she does for the nursing home residents. She pauses to reflect on her own feelings and beliefs about the care of older adults with dementia. Client Data and History: The Jones family consists of Ellen and George Jones who have been married for fifty-seven years. They have two children, Steve (56) and Patty 54). Mrs. Jones is an 85-year-old woman with an 11-year history of dementia of the Alzheimer s type. Over the past year, her physical and mental conditions have deteriorated. She is no longer able to participate in conversations with George or their children. She calls out for her husband, George, but doesn t always recognize him when he responds. She no longer recognizes her children, who find this change devastating. Ellen needs assistance with bathing and dressing and ambulates hesitantly. At times, she resists care, slapping George s hands when he tries to help her to the bathroom. She has lost some weight lately and frequently refuses to open her mouth when George tries to encourage her to eat, though she willingly accepts ice cream and other sweet treats. Mr. Jones is an 86-year-old man who is his wife s primary caregiver. He does all the household work, inside and out, takes care of the bill paying, laundry, shopping and meals. He has some chronic health problems, including hypertension, hearing loss, and urinary incontinence that has persisted since his TURP 1 year ago. Their son Steve lives in another state. He cares very deeply for his parents and calls frequently to check in with them. Steve is gay and is in a committed relationship, and is employed as an aeronautical engineer. Patty lives nearby. She is a middle school teacher with two adult children. She went through a difficult divorce about 9 months ago. She is also going through menopause, does not sleep well at night, and has frequent headaches. She is being treated for depression. She is very concerned about her parents and does as much as she can for them. 5
Narrative: Ellen has been recently admitted to a skilled nursing facility following a hospitalization for an episode of aspiration pneumonia. This is the second time in 4 months that she has developed aspiration pneumonia and each episode has left her weaker and unable to recover to her prior functional level. The barium swallow showed that Ellen is a silent aspirator. While in the hospital, Ellen had a j-tube placed for enteral feedings because of her aspiration risk and weight loss and was made NPO. Although George was reluctant to go along with this because he knows how much pleasure Ellen gets from eating her favorite foods, he agreed because of his concerns about her risks for another bout of aspiration pneumonia. However, when George was asked about a code status for Ellen, he became very upset and stated that the doctors were being cold and calloused. While he agreed that he didn t want to put Ellen through the rigors of invasive procedures, he kept repeating that he needed to do everything possible to help Ellen. George hopes that he will be able to bring Ellen home after a brief period of recuperation. In the shift report, Shawna learns about this new admission. She is told that George is nervous and that he is very picky about the care that Ellen is receiving. The C.N.A. on the day shift had to stop him from giving Ellen a drink of water because she is NPO. Shawna arrives to find a very harried and hassled George. He had tried to settle Ellen into bed with a cookie, but the aide had said she couldn t have it. Ellen had become quite upset when the cookie had been taken away and hit George the first time that has ever happened. George starts to cry as he relates this story. He admits that he feels overwhelmed with the situation and that he finds himself praying to God to take both of them. He feels very guilty that he consented to the j-tube placement. He admits that he didn t understand that Ellen would be NPO for the rest of her life; he thought it was just while she had pneumonia. He also feels terrible that he is not able to care for Ellen at home, stating he had promised her he would never put her in a nursing home. He says he is interested in physician assisted suicide for Ellen, stating that she had never wanted to end up like this. He wants Shawna s help in putting her out of her misery. 6
Medical Indications Jonsen Four Topics Model for Clinical Ethics Patient Preferences The Principle of Respect for Autonomy The Principles of Beneficence and Nonmaleficence 1. What is the patient s medical problem? History? Diagnosis? Prognosis? 2. Is the problem acute? Chronic? Critical? Emergent? Reversible? 3. What are the goals of treatment? 4. What are the probabilities of success? 5. What are the plans in case of therapeutic failure? 6. In sum, what care options are appropriate for this person and what are the benefits and potential harm related to each option? Quality of Life The Principles of Beneficence and Nonmaleficence and Respect for Autonomy 1. What are the prospects, with our without treatment for a return to normal life? 2. What physical, mental, and social deficits is the patient likely to experience if treatment succeeds? 3. Are there biases that might prejudice the provider s evaluation of the patient s quality of life? 4. Is the patient s present or future condition such that his or her continued life might be judged undesirable? 5. Is there any plan and rationale to forgo treatment? 6. Are there plans for comfort and palliative care? 1. Is the patient mentally capable and legally competent? Is there evidence of incapacity? 2. If competent, what is the patient stating about preferences for treatment? 3. Has the patient been informed of benefits and risks, understood this information and given consent? 4. If incapacitated, who is the appropriate surrogate? Is the surrogate using appropriate standards for decision making? 5. Has the patient expressed prior preferences (e.g., Advance Directives)? 6. Is the patient unwilling or unable to cooperate with medical treatment? If so why? 7. In sum, is the patient s right to choose being respected to the extent possible in ethics and law? Contextual Features The Principles of Loyalty and Fairness 1. Are there family issues that might influence treatment decisions? 2. Are their provider (physicians and nurses) issues that might influence treatment decisions? 3. Are there financial and economic factors? 4. Are there religious or cultural factors? 5. Are there limits on confidentiality? 6. Are there problems of allocation of resources? 7. How does the law affect treatment decisions? 8. Is clinical research or teaching involved? 9. Is there any conflict of interest on the part of the providers or the institution? Jonsen, A.R., Siegler, M. & Winslade, W.J. (2006). Clinical ethics: A practical approach to ethical decisions in clinical medicine. New York: McGraw-Hill. 7