Journal of General Internal Medicine

, Volume 25, Issue 3, pp 255–260 | Cite as

Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships

  • Sheryl Mitnick
  • Cathy Leffler
  • Virginia L. Hood
  • for the American College of Physicians Ethics, Professionalism and Human Rights Committee
Health Policy

Abstract

Family caregivers play a major role in maximizing the health and quality of life of more than 30 million individuals with acute and chronic illness. Patients depend on family caregivers for assistance with daily activities, managing complex care, navigating the health care system, and communicating with health care professionals. Physical, emotional and financial stress may increase caregiver vulnerability to injury and illness. Geographically distant family caregivers and health professionals in the role of family caregivers may suffer additional burdens. Physician recognition of the value of the caregiver role may contribute to a positive caregiving experience and decrease rates of patient hospitalization and institutionalization. However, physicians may face ethical challenges in partnering with patients and family caregivers while preserving the primacy of the patient-physician relationship. The American College of Physicians in conjunction with ten other professional societies offers ethical guidance to physicians in developing mutually supportive patient–physician–caregiver relationships.

KEY WORDS

caregivers physician palliative relationships 

Supplementary material

11606_2009_1206_MOESM1_ESM.doc (106 kb)
ESM 1(DOC 106 KB)

References

  1. 1.
    Feinberg LF. Options for supporting family caregivers. A policy paper of the Family Caregiver Alliance. 1997.Google Scholar
  2. 2.
    Levine C. Introduction to family caregiving: current challenges for a time honored practice. Generations (J. Amer. Soc. On Aging). 2003–2004;27:5–8.Google Scholar
  3. 3.
    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.
  4. 4.
    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.Google Scholar
  5. 5.
    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.Google Scholar
  6. 6.
    Gibson MJ, Houser AN. Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving. Washington: AARP Public Policy Institute; 2007.Google Scholar
  7. 7.
    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.
  8. 8.
    Glasser M, Prohaska T, Gravdal J. Elderly patients and their accompanying caregivers on medical visits. Res Aging. 2001;23:326–48.CrossRefGoogle Scholar
  9. 9.
    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.PubMedGoogle Scholar
  10. 10.
    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.
  11. 11.
    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.PubMedGoogle Scholar
  12. 12.
    Tsevat J, Cook EF, Green ML, et al. Health values of the seriously ill. Ann Intern Med. 1995;122:514–20.PubMedGoogle Scholar
  13. 13.
    Levine C. The good doctor: the carer’s perspective. Clin Med. 2004;4(3):244–5.PubMedGoogle Scholar
  14. 14.
    45CFR164.510Google Scholar
  15. 15.
    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.PubMedGoogle Scholar
  16. 16.
    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.PubMedGoogle Scholar
  17. 17.
    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.
  18. 18.
    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.CrossRefPubMedGoogle Scholar
  19. 19.
    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.CrossRefPubMedGoogle Scholar
  20. 20.
    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.Google Scholar
  21. 21.
    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.CrossRefGoogle Scholar
  22. 22.
    von Gunten, Ferris FD, Emanuel LL. Ensuring competency in end-of-life care. Communication and relational skills. JAMA. 2000;284:3051–7.Google Scholar
  23. 23.
    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.Google Scholar
  24. 24.
    Rodriquez KL, Young AJ. Perspectives of elderly veterans regarding communications of medical providers about EOL Care. J Palliat Med. 2005;8:534–44.CrossRefGoogle Scholar
  25. 25.
    Covinsky KE, Yaffe K. Editorial Dementia, prognosis and the needs of patients and caregivers. Ann Intern Med. 2004;140:573–4.PubMedGoogle Scholar
  26. 26.
    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.Google Scholar
  27. 27.
    Perkins HS. Controlling Death: The false promise of advance directives. Ann Intern Med. 2007;147:51–7.PubMedGoogle Scholar
  28. 28.
    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.Google Scholar
  29. 29.
    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.CrossRefPubMedGoogle Scholar
  30. 30.
    Fins JJ, Maltby BS. Fidelity, Wisdom, and Love: Patients and Proxies in Partnership. New York: Fan Fox and Leslie R. Samuels Foundation; 2003.Google Scholar
  31. 31.
    Lang F, Quill T. Making decisions with families at the end of life. Am Fam Physician. 2004;70:719–23.PubMedGoogle Scholar
  32. 32.
    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.PubMedGoogle Scholar
  33. 33.
    Parks SM, Novielli KD. A practical guide to caring for caregivers. Am Fam Physician. 2000;62(12):2613–22.PubMedGoogle Scholar
  34. 34.
    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.CrossRefPubMedGoogle Scholar
  35. 35.
    Musil CM, Morris DL, Warner CB, Saeid H. Issues in Caregivers’ stress and providers’ support. Res Aging. 2003;25:505–26.CrossRefGoogle Scholar
  36. 36.
    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.Google Scholar
  37. 37.
    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.CrossRefPubMedGoogle Scholar
  38. 38.
    Given BA, Given CW, Kozachik S. Family support in advanced cancer. CA Cancer J Clin. 2001;51:213–31.CrossRefPubMedGoogle Scholar
  39. 39.
    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.Google Scholar
  40. 40.
    Dern A, Heath A. Reaching out to caregivers through physicians. Generations (J. Amer. Soc. On Aging). 2003–2004;27:84–6.Google Scholar
  41. 41.
    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.
  42. 42.
    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.
  43. 43.
    Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA. 1999;282:2215–9.CrossRefPubMedGoogle Scholar
  44. 44.
    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.PubMedGoogle Scholar
  45. 45.
    Benefield LE, Beck C. Reducing the distance in distance-caregiving by technology innovation. Clin Interv Aging. 2007;2(2):267–72.PubMedGoogle Scholar
  46. 46.
    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.PubMedGoogle Scholar
  47. 47.
    American Academy of Hospice and Palliative Medicine. Definition of Palliative Care. Available at http://www.aahpm.org/positions/definition.html. Accessed November 11, 2009.
  48. 48.
    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.
  49. 49.
    Bascom PB, Tolle SW. Care of the family when the patient is dying. West J Med. 1995;163:292–96.PubMedGoogle Scholar
  50. 50.
    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.CrossRefPubMedGoogle Scholar
  51. 51.
    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.CrossRefPubMedGoogle Scholar
  52. 52.
    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.CrossRefPubMedGoogle Scholar
  53. 53.
    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.Google Scholar
  54. 54.
    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.PubMedGoogle Scholar
  55. 55.
    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.PubMedGoogle Scholar
  56. 56.
    Wasserman RC, Hassuk BM, Young PC, Land ML. Health care of physicians’ children. Pediatrics. 1989;83:319–22.PubMedGoogle Scholar
  57. 57.
    Wahls TL. Reflections: a daughter’s duty. JGIM. 2008;23(6):887–8.CrossRefPubMedGoogle Scholar
  58. 58.
    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.
  59. 59.
    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.
  60. 60.
    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.CrossRefPubMedGoogle Scholar

Copyright information

© Society of General Internal Medicine 2010

Authors and Affiliations

  • Sheryl Mitnick
    • 1
  • Cathy Leffler
  • Virginia L. Hood
    • 2
    • 3
  • for the American College of Physicians Ethics, Professionalism and Human Rights Committee
  1. 1.Center for Ethics and ProfessionalismAmerican College of PhysiciansPhiladelphiaUSA
  2. 2.Ethics, Professionalism and Human Rights CommitteeAmerican College of PhysiciansPhiladelphiaUSA
  3. 3.Nephrology Unit RehabilitationUniversity of VermontBurlingtonUSA

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