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END-OF-LIFE DECISION MAKING

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c h a p t e r 11Ethics Conflicts in Rural Communities:End-of-Life Decision-Making Denise Niemira, Tom TownsendDisclaimerDartmouth Medical School’s Department of Community and Family Medicine, the editor, and the authors of the Handbook for Rural Health Care Ethics are pleased to grant use of these materials without charge providing that appropriate acknowledgement is given. Any alterations to the documents for local suitability are acceptable. All users are limited to one’s own use and not for resale.Every effort has been made in preparing the Handbook to provide accurate and up-to-date information that is in accord with accepted standards and practice. Nevertheless, the editor and authors can make no warranties that the information contained herein is totally free from error, not least because clinical standards are constantly changing through research and regulation. The authors and editor therefore disclaim all liability for direct or consequential damages resulting from the use of material contained in this book. Although many of the case studies contained in the Handbook are drawn from actual events, every effort has been made to disguise the identities and the organizations involved.The Handbook for Rural Health Care Ethics provides general ethics information and guidance. Due to complexities and constant changes in the law, exceptions to general principles of law, and variations of state laws, health care professionals should seek specific legal counsel and advice before acting on any legal-related, health care ethics issue.Additionally, we have sought to ensure that the URLs for external Web sites referred to in the Handbook are correct and active at the time of placing this material on the home Web site. However, the editor has no responsibility for the Web sites and can make no guarantee that a site will remain live or that the content is or will remain appropriate.Handbook for rural Health care ethics: a Practical Guide for ProfessionalsDartmouth College PressPublished by University Press of New EnglandOne Court Street, Suite 250, Lebanon NH 03766www.upne.comCopyright © 2009 Trustees of Dartmouth College, Hanover, NHEdited by William A. NelsonCover and text design by Three Monkeys Design Works Supported by NIH National Library of Medicine Grant # 5G13LM009017-02CHAPTER 11Ethics Conflicts in Rural Communities: end-of-life Decision-making Denise Niemira, Tom TownsendaBsTracTCaring for people at the end of their lives can be one of the most challenging and personally rewarding aspects of primary care. The proximity to death intensifies and transforms the medical encounter calling upon both the emotional and the clinical competence of the medical provider. As people live longer with chronic illnesses, and as life-prolonging interventions become routine, death frequently involves a decision to forgo or limit care. Such decisions can generate moral conflict, even when the ethical and legal principles governing decisions are well defined and widely accepted. Family members, may feel that withdrawing life support is morally different than withholding such therapy in the first place. Surrogates named in advance directives may want to keep their loved ones alive rather than follow directives, even when the patient’s wishes are clearly articulated. The clinician’s responsibility is to support the autonomy of the dying person, while recognizing the emotional needs of the family. This has become more challenging in cases where there is no ethical consensus about either the decision to be made, and/or the legal requirements for its enactment, such as the withdrawal of artificial nutrition or terminal weaning from a ventilator. Ethical challenges in end-of-life care are heightened for rural providers who often have multifaceted relationships with patients and their families. Rural providers are sometimes the sole recipients of oral directives, and may have less experience than urban providers with complex end-of-life care. Rural clinicians should enact procedures to help their patients and patient’s families prepare for the end-of-life process to reduce both ethics conflicts and undue stress for all parties involved.210 Common Ethics Issues in Rural Communitiescase sTUDiescase 11.1 | Surrogate wishes run counter to advance directives Dr. Mark Townes, a family practitioner, returns from a vacation to find Frank Foote, a 72-year-old patient with multiple illnesses, including heart failure and end-stage COPD, on a ventilator in intensive care. Brenda Foote, Frank’s wife of 48 years, greets Dr. Townes, saying, “I’m so glad you’re back. His breathing got so bad I had to call 911. Your partner put in a breathing tube, and now he’s been on the ventilator for six days. The antibiotics for the pneumo-nia aren’t working so well. Your partner told me he should go to the University Hospital, because his breathing isn’t getting better and he may need a tracheotomy. I’m so scared I might lose him. They say he’s not responsive, but he seems to calm down when I speak to him and act up when they poke him to draw blood.” A read-ing of the medical record confirms Mrs. Foote’s story. Dr. Townes’ partner, following Mrs. Foote’s lead, has pursued aggressive care and Mr. Foote is in full code. The chart indicates that Mr. Foote had no advance directive, although Dr. Townes and Mr. Foote had discussed it at his last visit, and Mr. Foote assured Dr. Townes that an advance directive had been completed, but had not yet been witnessed. Two unsuccessful attempts have been made to wean Mr. Foote off of the ventilator. Based on previous discussions with the patient, Dr. Townes knows that continued care including intuba-tion is not what Mr. Foote would want. However, Mrs. Foote is also Dr. Townes’ patient, and he knows that she has a hard time con-fronting death — both her own and her husband’s. Dr. Townes also knows that withdrawing Mr. Foote’s ventilator will not be a typical procedure at his small hospital, and that there exists no policy for terminal weaning. The doctor is uncertain as to how to proceed. case 11.2 | Colleagues disagree with end-of-life decisionsDr. Rachel Dennis, a general internist, has recently discharged Mr. Coulter to a nursing home for permanent placement, following a hospitalization for complications related to a fall. Mr. Coulter, 80End-of-Life Decision-Making 211years old, has end-stage Alzheimer’s disease, with a swallowing


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