If you’ve ever sat in a physician’s office with your loved one and wondered if you were invisible, there may now be a reason to feel hopeful. The American College of Physicians (ACP), a national organization of internists, recently published a position paper aimed at recognizing the important role that family caregivers play in the lives of millions of individuals dealing with chronic conditions and/or the frailties of old age.
Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships is an effort by the ACP to provide “ethical guidance to physicians in developing mutually supportive patient-physician-caregiver relationships.” The purpose of the paper is to help physicians recognize the value of family caregivers to the health and well-being of their patients. At the same time, the authors provide ethical guidance to physicians, who must balance this recognition with their duty to “preserve the primacy of the patient-physician relationship.”
The authors define family caregivers to include “relatives, partners, friends and neighbors who assist with activities of daily living and complex healthcare needs that were once the domain of trained hospital personnel.” They outline a list of specific recommendations aimed at assisting physicians to develop mutually supportive relationships not only with their patients, but with family caregivers as well.
After years of advocating for the physician community to recognize and support the role of family caregivers, NFCA is excited to see a major physician organization address this crucial challenge. In an effort to better explain what this paper means to all family caregivers, we posed some questions to the American College of Physicians.
What was the trigger that made the College want to create this document?
The American College of Physicians (ACP) has long acknowledged the significant contribution of family caregivers. The ACP Ethics, Professionalism and Human Rights Committee recognized the need for the development of policy to focus on ethical issues in family caregiver-patient-physician relationships.
Did you speak with any family caregivers when preparing this document?
From the beginning of this process we worked with physicians, professional and advocacy organizations as well as family caregivers. After many levels of organizational review, the paper was sent to outside experts with experience in family caregiver issues. Several of these reviewers provided thoughtful feedback and their comments were incorporated into the guidelines.
What do you hope will be achieved by the publication of this document?
It is our hope that as physicians recognize the significant contributions of family caregivers, they will provide better support for their needs. Effective communication and mutual trust are key to an effective partnership that will lead to improved care for patients. Physician recognition of the value of the caregiver role may improve the caregiving experience and even decrease rates of patient hospitalization.
How have the guidelines been disseminated to your members?
The Family Caregivers statement was published online in the January 9, 2010, Journal of General Internal Medicine and in its print version as well. The College Web site has promoted the paper to members and it has also received widespread publicity through national news media. A list of resources for physicians and caregivers was also published online (available at www.acponline.org/running_practice/ethics/issues/policy/caregivers_appendix.pdf ).
What other physician groups have endorsed these guidelines? How will these groups be disseminating this information to their memberships?
The guidelines have been endorsed by 10 other professional medical societies, including the Society of General Internal Medicine, the American Academy of Neurology, the American Academy of Hospice and Palliative Medicine, the American College of Chest Physicians, the American College of Osteopathic Internists, the American Geriatrics Society, the American Medical Directors Association, the American Thoracic Society, the Society of Critical Care Medicine, and The Endocrine Society. Many of these groups have informed their memberships of the publication through their newsletters.
What does ACP think is the most innovative aspect of the guidelines?
The College considers the entire position statement to be important for physicians because although many other health professions have integrated the family caregiver into their approach to patient care, traditionally, medicine has focused on the relationship between the patient and the physician.
What will be necessary to turn the guidelines into practice reality?
Next steps include development of case studies involving family caregiver-patient-physician relationship issues. We are also exploring partnering with advocacy organizations such as the National Family Caregivers Association and Caring From a Distance to develop educational sessions for physicians, bringing further attention to these issues.
What can family caregivers do to help turn the recommendations contained in this document into action items on the part of physicians?
Family caregivers and physicians have a mutual goal to provide good care to the patient. As physicians realize that providing patient-centered care means partnering with family caregivers, family caregivers must be aware that physicians are ethically obligated to put the patient first. However, provided the patient is in agreement, the family caregivers should become part of the process as well. Family caregivers should know that the patient must give permission for physicians to speak to the caregiver to comply with the Health Insurance Portability and Accountability Act (HIPAA) requirements.
What can family caregivers do overall to ensure that their needs are recognized and addressed by the medical community?
In order to optimize relationships with physicians and other members of the healthcare team, it is important that the patient identify the family caregiver as serving in that role. The family caregiver should clarify with the patient what that role involves and together they should communicate that to the physician so that there is a common understanding of the goals and responsibilities involved in that relationship.
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