Người Chăm Sóc Gia Đình, Bệnh Nhân và Bác Sĩ: Hướng Dẫn Đạo Đức Để Tối Ưu Hóa Các Mối Quan Hệ

Journal of General Internal Medicine - Tập 25 - Trang 255-260 - 2010
Sheryl Mitnick1, Cathy Leffler, Virginia L. Hood2,3
1Center for Ethics and Professionalism, American College of Physicians, Philadelphia, USA
2Ethics, Professionalism and Human Rights Committee, American College of Physicians, Philadelphia, USA
3Nephrology Unit Rehabilitation, University of Vermont, Burlington, USA

Tóm tắt

Người chăm sóc gia đình đóng vai trò quan trọng trong việc tối đa hóa sức khỏe và chất lượng cuộc sống của hơn 30 triệu người mắc bệnh cấp tính và mãn tính. Bệnh nhân phụ thuộc vào người chăm sóc gia đình để hỗ trợ các hoạt động hàng ngày, quản lý chăm sóc phức tạp, điều hướng hệ thống chăm sóc sức khỏe và giao tiếp với các chuyên gia chăm sóc sức khỏe. Căng thẳng về thể chất, cảm xúc và tài chính có thể làm tăng sự dễ bị tổn thương của người chăm sóc đối với thương tích và bệnh tật. Những người chăm sóc gia đình và các chuyên gia y tế ở địa lý xa có thể phải chịu thêm gánh nặng. Sự nhận thức của bác sĩ về giá trị của vai trò người chăm sóc có thể góp phần tạo ra trải nghiệm chăm sóc tích cực và giảm tỷ lệ bệnh nhân nhập viện và phải vào cơ sở chăm sóc. Tuy nhiên, các bác sĩ có thể phải đối mặt với những thách thức đạo đức trong việc hợp tác với bệnh nhân và người chăm sóc gia đình trong khi vẫn giữ vững sự ưu tiên của mối quan hệ giữa bệnh nhân và bác sĩ. Học viện Y khoa Mỹ cùng với mười hiệp hội nghề nghiệp khác cung cấp những hướng dẫn đạo đức cho các bác sĩ trong việc phát triển các mối quan hệ hỗ trợ lẫn nhau giữa bệnh nhân, bác sĩ và người chăm sóc.

Từ khóa

#người chăm sóc gia đình #bệnh nhân #bác sĩ #đạo đức #chăm sóc sức khỏe

Tài liệu tham khảo

Feinberg LF. Options for supporting family caregivers. A policy paper of the Family Caregiver Alliance. 1997. Levine C. Introduction to family caregiving: current challenges for a time honored practice. Generations (J. Amer. Soc. On Aging). 2003–2004;27:5–8. Family Caregiver Alliance, National Center on Caregiving. Caregivers count too! A toolkit to help practitioners assess the needs of family caregivers. June 2006. Available at: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1695. Accessed November 11, 2009. Levine C, Reinhard SC, Feinberg LF, Albert S, Hart A. Family caregivers on the job: moving beyond ADLs and IADLs. Generations (J. Amer. Soc. On Aging). 2003–2004;27:17–23. Gould DA. Family caregivers and the health care system. Findings from a National Survey. In: Levine C, Murray TH, eds. The Cultures of Caregiving. Conflict and Common Ground among Families, Health Professionals and Policy Makers. Baltimore: The Johns Hopkins University Press; 2004. Gibson MJ, Houser AN. Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving. Washington: AARP Public Policy Institute; 2007. Barr M, Ginsburg J. The advanced medical home: a patient-centered, physician-guided model of health care. Policy monograph. American College of Physicians: 2006. Available at: http://www.acponline.org/advocacy/where_we_stand/policy/adv_med.pdf. Accessed November 11, 2009. Glasser M, Prohaska T, Gravdal J. Elderly patients and their accompanying caregivers on medical visits. Res Aging. 2001;23:326–48. Hirschman KB, Joyce CM, James BD, Xie SX, Karlawish JHT. Do Alzheimer’s Disease patients want to participate in a treatment decision, and would their caregivers let them? Gerontologist. 2005;45:381–8. Fact Sheet : Helping Families Make Everyday Care Choices (for Providers). Family Caregiver Alliance 2000.. Available at: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=405. Accessed November 11, 2009. Whitlatch CH, Feinberg LF, Tucke SS. Measuring the values and preferences for everyday care of persons with cognitive impairment and their family caregivers. Gerontologist. 2005;45:370–80. Tsevat J, Cook EF, Green ML, et al. Health values of the seriously ill. Ann Intern Med. 1995;122:514–20. Levine C. The good doctor: the carer’s perspective. Clin Med. 2004;4(3):244–5. 45CFR164.510 Wilson JF. Health insurance portability and accountability act privacy rule causes ongoing concerns among clinicians and researchers. Ann Intern Med. 2006;145(4):313–6. Auerbach SM, Kiesler DJ, Wartella J, Rausch S, Ward KR, Ivatury R. Optimism, satisfaction with needs met, interpersonal perceptions of the healthcare team, and emotional distress in patients’ family members during critical care hospitalization. Am J Crit Care. 2005;14:202–10. Alzheimer’s Association. Alzheimer’s Disease Study: Communication Gaps Between Primary Care Physicians and Caregivers. May 2001. Available at: http://www.alz.org/national/documents/alzheimerreport.pdf. Accessed November 11, 2009. Rabow MW, Hauser JW, Adams J. Supporting family caregivers at the end of life. “They don’t know what they don’t know”. JAMA. 2004;291:483–91. Cherlin E, Fried T, Prigerson HG, Schulman-Green D, Johnson-Hurzeler R, Bradley EH. Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said? J Palliat Med. 2005;8:1176–85. Ronch JL. Changing institutional culture: turning adversaries into partners. In: Levine C, Murray TH, eds. The Cultures of Caregiving. Conflict and Common Ground among Families, Health Professionals and Policy Makers. Baltimore: The Johns Hopkins University Press; 2004. Kaldjian LC, Curtis AE, Shinkunas LA, Cannon KT. Goals of care toward the end of life: a structured literature review. American Journal of Hospice and Palliative Medicine. 2009;25:501–11. von Gunten, Ferris FD, Emanuel LL. Ensuring competency in end-of-life care. Communication and relational skills. JAMA. 2000;284:3051–7. Crawley LM, Marshal PA, Koenig BA. Respecting cultural differences at the end of life. In: Snyder L, Quill T, eds. Physician’s Guide to End of Life Care. Philadelphia: American College of Physicians; 2001:35–55. Rodriquez KL, Young AJ. Perspectives of elderly veterans regarding communications of medical providers about EOL Care. J Palliat Med. 2005;8:534–44. Covinsky KE, Yaffe K. Editorial Dementia, prognosis and the needs of patients and caregivers. Ann Intern Med. 2004;140:573–4. Ethics and Human Rights Committee, American College of Physicians. Ethics manual: fifth edition. Ann Intern Med. 2005;142:560–82. Available at: http://www.acponline.org/running_practice/ethics/manual/. Accessed on November 11, 2009. Perkins HS. Controlling Death: The false promise of advance directives. Ann Intern Med. 2007;147:51–7. Karlawish JH, Quill TE, Meier DE. A Consensus-based Approach to Practicing Palliative Care for Patients Who Lack Decision-making Capacity. In: Snyder L, Quill T, eds. Physician’s Guide to End of Life Care. Philadelphia: American College of Physicians; 2001:19–34. Fins JJ, Maltby BS, Friedmann E, et al. Contracts, covenants and advance care planning: an empirical study of the moral obligations of patient and proxy. J Pain Symptom Manage. 2005;29(1):55–68. Fins JJ, Maltby BS. Fidelity, Wisdom, and Love: Patients and Proxies in Partnership. New York: Fan Fox and Leslie R. Samuels Foundation; 2003. Lang F, Quill T. Making decisions with families at the end of life. Am Fam Physician. 2004;70:719–23. Quill TE, Byock IR. Responding to intractable suffering: the role of terminal sedation and voluntary refusal of food and fluids. Ann Intern Med. 2000;132:408–14. Parks SM, Novielli KD. A practical guide to caring for caregivers. Am Fam Physician. 2000;62(12):2613–22. Coleman EA, Parry C, Chalmers S, Min S. The care transitions intervention: results of a randomized controlled trial. Arch Intern Med. 2006;166(17):1822–8. Musil CM, Morris DL, Warner CB, Saeid H. Issues in Caregivers’ stress and providers’ support. Res Aging. 2003;25:505–26. Mezey M. Nurses and Their Changing Relationship to Family Caregivers. In: Levine C, Murray TH, eds. The Cultures of Caregiving. Conflict and Common Ground among Families, Health Professionals and Policy Makers. Baltimore: The Johns Hopkins University Press; 2004. Brazil K, Bedard M, Krueger P, Abernathy T, Lohfeld L, Willison K. Service preferences among family caregivers of the terminally ill. J Palliat Med. 2005;8:69–78. Given BA, Given CW, Kozachik S. Family support in advanced cancer. CA Cancer J Clin. 2001;51:213–31. Levine C, Murray TH. Conclusion. Building on Common Ground. In: Levine C, Murray TH, eds. The Cultures of Caregiving. Conflict and Common Ground among Families, Health Professionals and Policy Makers. Baltimore: The Johns Hopkins University Press; 2004. Dern A, Heath A. Reaching out to caregivers through physicians. Generations (J. Amer. Soc. On Aging). 2003–2004;27:84–6. National Alliance for Caregiving and AARP. Caregiving in the US. April 2004. Bethesda, MD and Washington, DC. Available at: http://www.caregiving.org/data/04finalreport.pdf. Accessed November 11, 2009. Evercare and The National Alliance for Caregiving. Evercare study of caregivers in decline: a close-up look at the health risks of caring for a loved one. September 2006. Minnetonka, Minnesota. Available at: http://www.caregiving.org/data/Caregivers%20in%20Decline%20Study-FINAL-lowres.pdf. Accessed November 11, 2009. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA. 1999;282:2215–9. Belle SH, et al. Enhancing the quality of life of dementia caregivers from different ethnic or racial groups; a randomized, controlled trial. Ann Intern Med. 2006;145:727–38. Benefield LE, Beck C. Reducing the distance in distance-caregiving by technology innovation. Clin Interv Aging. 2007;2(2):267–72. Karlawish J, Quill TE, Meier D. For the ACP-ASIM End-of-Life Care Consensus Panel. A consensus-based approach to providing palliative care to patients who lack decision-making capacity. Ann Intern Med. 1999;130:835–40. American Academy of Hospice and Palliative Medicine. Definition of Palliative Care. Available at http://www.aahpm.org/positions/definition.html. Accessed November 11, 2009. United States Department of Health and Human Services. Centers for Medicare & Medicaid Services. Medicare Hospice Benefits. CMS Publication No. 02154 Revised September 2008. Available at: http://www.medicare.gov/publications/Pubs/pdf/02154.pdf. Accessed November 11, 2009. Bascom PB, Tolle SW. Care of the family when the patient is dying. West J Med. 1995;163:292–96. Hebert RS, Dang Q, Schulz R. Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia: Findings from the REACH study. J Palliat Med. 2006;9(3):683–93. Schulz R, Mendelsohn AB, Haley WE, et al. End-of-life Care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med. 2003;349:1936–42. Schulz R, Beach SR, Lind R, et al. Involvement in caregiving and adjustment to the death of a spouse. Findings from the Caregiver Health Effects Study. JAMA. 2001;285:3123–9. Cassarett D, Kutner JS, Abrahm J. Life after death: a practical approach to grief and bereavement. In: Snyder L, Quill T, eds. Physician’s Guide to End of Life Care. Philadelphia: American College of Physicians; 2001:178–93. Crawley LM, Marshall PA, Lo B, Koenig BA. End-of-Life Care Consensus Panel. Strategies for culturally effective end-of-life care. Ann Intern Med. 2002;136(9):673–9. Lo B, Quill T, Tulsky J. Discussing palliative care with patients. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine. Ann Intern Med. 1999;130:744–9. Wasserman RC, Hassuk BM, Young PC, Land ML. Health care of physicians’ children. Pediatrics. 1989;83:319–22. Wahls TL. Reflections: a daughter’s duty. JGIM. 2008;23(6):887–8. Sirmon MD. Tobacco, tulips, and terminal care. Ann Intern Med 1993; 1042–1043. Available at: http://www.annals.org/content/119/10/1042.full. Accessed November 11, 2009. Southwick F. Who Was Caring for Mary? Ann Intern Med 1993; 146–148. Available at: http://www.annals.org/content/118/2/146.full. Accessed November 11, 2009. Chen FM, Feudtner C, Rhodes LA, Green LA. Role conflicts of physicians and their family members: rules but no rulebook. West J Med. 2001;175(4):236–9.