Skip to main content
Top
Published in: Journal of General Internal Medicine 3/2010

01-03-2010 | Health Policy

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

Authors: Sheryl Mitnick, RN, MPH, Cathy Leffler, JD, Virginia L. Hood, MBBS, MPH, FACP, for the American College of Physicians Ethics, Professionalism and Human Rights Committee

Published in: Journal of General Internal Medicine | Issue 3/2010

Login to get access

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.
Appendix
Available only for authorised users
Literature
1.
go back to reference Feinberg LF. Options for supporting family caregivers. A policy paper of the Family Caregiver Alliance. 1997. Feinberg LF. Options for supporting family caregivers. A policy paper of the Family Caregiver Alliance. 1997.
2.
go back to reference Levine C. Introduction to family caregiving: current challenges for a time honored practice. Generations (J. Amer. Soc. On Aging). 2003–2004;27:5–8. Levine C. Introduction to family caregiving: current challenges for a time honored practice. Generations (J. Amer. Soc. On Aging). 2003–2004;27:5–8.
4.
go back to reference 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. 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.
5.
go back to reference 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. 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.
6.
go back to reference Gibson MJ, Houser AN. Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving. Washington: AARP Public Policy Institute; 2007. Gibson MJ, Houser AN. Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving. Washington: AARP Public Policy Institute; 2007.
8.
go back to reference Glasser M, Prohaska T, Gravdal J. Elderly patients and their accompanying caregivers on medical visits. Res Aging. 2001;23:326–48.CrossRef Glasser M, Prohaska T, Gravdal J. Elderly patients and their accompanying caregivers on medical visits. Res Aging. 2001;23:326–48.CrossRef
9.
go back to reference 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.PubMed 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.PubMed
11.
go back to reference 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.PubMed 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.PubMed
12.
go back to reference Tsevat J, Cook EF, Green ML, et al. Health values of the seriously ill. Ann Intern Med. 1995;122:514–20.PubMed Tsevat J, Cook EF, Green ML, et al. Health values of the seriously ill. Ann Intern Med. 1995;122:514–20.PubMed
13.
go back to reference Levine C. The good doctor: the carer’s perspective. Clin Med. 2004;4(3):244–5.PubMed Levine C. The good doctor: the carer’s perspective. Clin Med. 2004;4(3):244–5.PubMed
15.
go back to reference 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.PubMed 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.PubMed
16.
go back to reference 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.PubMed 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.PubMed
18.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
19.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
20.
go back to reference 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. 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.
21.
go back to reference 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.CrossRef 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.CrossRef
22.
go back to reference von Gunten, Ferris FD, Emanuel LL. Ensuring competency in end-of-life care. Communication and relational skills. JAMA. 2000;284:3051–7. von Gunten, Ferris FD, Emanuel LL. Ensuring competency in end-of-life care. Communication and relational skills. JAMA. 2000;284:3051–7.
23.
go back to reference 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. 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.
24.
go back to reference Rodriquez KL, Young AJ. Perspectives of elderly veterans regarding communications of medical providers about EOL Care. J Palliat Med. 2005;8:534–44.CrossRef Rodriquez KL, Young AJ. Perspectives of elderly veterans regarding communications of medical providers about EOL Care. J Palliat Med. 2005;8:534–44.CrossRef
25.
go back to reference Covinsky KE, Yaffe K. Editorial Dementia, prognosis and the needs of patients and caregivers. Ann Intern Med. 2004;140:573–4.PubMed Covinsky KE, Yaffe K. Editorial Dementia, prognosis and the needs of patients and caregivers. Ann Intern Med. 2004;140:573–4.PubMed
27.
go back to reference Perkins HS. Controlling Death: The false promise of advance directives. Ann Intern Med. 2007;147:51–7.PubMed Perkins HS. Controlling Death: The false promise of advance directives. Ann Intern Med. 2007;147:51–7.PubMed
28.
go back to reference 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. 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.
29.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
30.
go back to reference Fins JJ, Maltby BS. Fidelity, Wisdom, and Love: Patients and Proxies in Partnership. New York: Fan Fox and Leslie R. Samuels Foundation; 2003. Fins JJ, Maltby BS. Fidelity, Wisdom, and Love: Patients and Proxies in Partnership. New York: Fan Fox and Leslie R. Samuels Foundation; 2003.
31.
go back to reference Lang F, Quill T. Making decisions with families at the end of life. Am Fam Physician. 2004;70:719–23.PubMed Lang F, Quill T. Making decisions with families at the end of life. Am Fam Physician. 2004;70:719–23.PubMed
32.
go back to reference 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.PubMed 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.PubMed
33.
go back to reference Parks SM, Novielli KD. A practical guide to caring for caregivers. Am Fam Physician. 2000;62(12):2613–22.PubMed Parks SM, Novielli KD. A practical guide to caring for caregivers. Am Fam Physician. 2000;62(12):2613–22.PubMed
34.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
35.
go back to reference Musil CM, Morris DL, Warner CB, Saeid H. Issues in Caregivers’ stress and providers’ support. Res Aging. 2003;25:505–26.CrossRef Musil CM, Morris DL, Warner CB, Saeid H. Issues in Caregivers’ stress and providers’ support. Res Aging. 2003;25:505–26.CrossRef
36.
go back to reference 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. 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.
37.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
38.
go back to reference Given BA, Given CW, Kozachik S. Family support in advanced cancer. CA Cancer J Clin. 2001;51:213–31.CrossRefPubMed Given BA, Given CW, Kozachik S. Family support in advanced cancer. CA Cancer J Clin. 2001;51:213–31.CrossRefPubMed
39.
go back to reference 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. 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.
40.
go back to reference Dern A, Heath A. Reaching out to caregivers through physicians. Generations (J. Amer. Soc. On Aging). 2003–2004;27:84–6. Dern A, Heath A. Reaching out to caregivers through physicians. Generations (J. Amer. Soc. On Aging). 2003–2004;27:84–6.
43.
go back to reference Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA. 1999;282:2215–9.CrossRefPubMed Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA. 1999;282:2215–9.CrossRefPubMed
44.
go back to reference 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.PubMed 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.PubMed
45.
go back to reference Benefield LE, Beck C. Reducing the distance in distance-caregiving by technology innovation. Clin Interv Aging. 2007;2(2):267–72.PubMed Benefield LE, Beck C. Reducing the distance in distance-caregiving by technology innovation. Clin Interv Aging. 2007;2(2):267–72.PubMed
46.
go back to reference 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.PubMed 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.PubMed
49.
go back to reference Bascom PB, Tolle SW. Care of the family when the patient is dying. West J Med. 1995;163:292–96.PubMed Bascom PB, Tolle SW. Care of the family when the patient is dying. West J Med. 1995;163:292–96.PubMed
50.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
51.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
52.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
53.
go back to reference 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. 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.
54.
go back to reference 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.PubMed 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.PubMed
55.
go back to reference 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.PubMed 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.PubMed
56.
go back to reference Wasserman RC, Hassuk BM, Young PC, Land ML. Health care of physicians’ children. Pediatrics. 1989;83:319–22.PubMed Wasserman RC, Hassuk BM, Young PC, Land ML. Health care of physicians’ children. Pediatrics. 1989;83:319–22.PubMed
60.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
Metadata
Title
Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships
Authors
Sheryl Mitnick, RN, MPH
Cathy Leffler, JD
Virginia L. Hood, MBBS, MPH, FACP
for the American College of Physicians Ethics, Professionalism and Human Rights Committee
Publication date
01-03-2010
Publisher
Springer-Verlag
Published in
Journal of General Internal Medicine / Issue 3/2010
Print ISSN: 0884-8734
Electronic ISSN: 1525-1497
DOI
https://doi.org/10.1007/s11606-009-1206-3

Other articles of this Issue 3/2010

Journal of General Internal Medicine 3/2010 Go to the issue
Live Webinar | 27-06-2024 | 18:00 (CEST)

Keynote webinar | Spotlight on medication adherence

Live: Thursday 27th June 2024, 18:00-19:30 (CEST)

WHO estimates that half of all patients worldwide are non-adherent to their prescribed medication. The consequences of poor adherence can be catastrophic, on both the individual and population level.

Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.

Prof. Kevin Dolgin
Prof. Florian Limbourg
Prof. Anoop Chauhan
Developed by: Springer Medicine
Obesity Clinical Trial Summary

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine

Highlights from the ACC 2024 Congress

Year in Review: Pediatric cardiology

Watch Dr. Anne Marie Valente present the last year's highlights in pediatric and congenital heart disease in the official ACC.24 Year in Review session.

Year in Review: Pulmonary vascular disease

The last year's highlights in pulmonary vascular disease are presented by Dr. Jane Leopold in this official video from ACC.24.

Year in Review: Valvular heart disease

Watch Prof. William Zoghbi present the last year's highlights in valvular heart disease from the official ACC.24 Year in Review session.

Year in Review: Heart failure and cardiomyopathies

Watch this official video from ACC.24. Dr. Biykem Bozkurt discusses last year's major advances in heart failure and cardiomyopathies.