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ACP paper: Strategies to address patient caregivers
Many patients live within web of relationships
Acknowledging, respecting, and accommodating the role of the patient caregiver in physician-patient relationships was the impetus for a position paper published earlier this year by the American College of Physicians (ACP) and developed by its Ethics, Professionalism and Human Rights Committee.
With trends like increasing levels of chronic illness and attempts by hospitals to reduce lengths of stay, patient caregivers in the home are playing a larger role today in overall patient care, says Joseph J. Fins, MD, FACP, vice chair of the ACP committee responsible for the position paper, titled "Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships."1
Patient caregivers are "sort of the unacknowledged caregiver in the room, and taking up a tremendous amount of burden and really not being recognized," Fins tells Medical Ethics Advisor.
The goal of the paper is to provide strategies for internists and other physicians to address the role and needs of the caregiver while still upholding the primacy of the physician-patient relationship.
"We felt that it was necessary to kind of systematically review the landscape and the issues that are confronted by patients and their caregivers and to write a guide for physicians . . . to provide ethical guidance on how to negotiate that relationship," Fins says.
"We thought it was a skill set that internists needed to have and that [is] often called upon in these roles. And it's a situation that's at home; it's not an inpatient situation. [It] may not be in a hospice. It may not be labeled as end-of-life care, so it's kind of a chronic care sort of zone, and so we wanted to . . . go through some of the scenarios that were most likely to be complicated, where [physicians] may need some guidance and clarification," Fins explains.
And while the paper holds that the physician-patient relationship is the priority, it suggests as does Fins that in order to provide the best care, a physician must respect the role of the caregiver, upon whom the patient may depend for everything from nutrition to activities of daily living to complex care, which historically may have been delivered by nurses in a hospital setting.
Fins maintains that "the notions of autonomy and patient self-determination from the early days of bioethics are a little ill-fitting in the reality of everyday patient life, in that we're not atoms in isolation we're molecules and we're in relationships with others, so we can talk about autonomy in sort of an atomistic approach to the individual, but we really fail if they're in these relationships."
"The caregiver's in the room. The patient may be autonomous to make choices, but it doesn't mean that the caregiver is not going to influence the patient, or that the patient is not dependent on the caregiver. To be autonomous, they many need to be dependent upon the caregiver, which . . . demonstrates that they're not fully autonomous or independent, because they depend on each other," Fins says.
"I think what we were trying to do here is to acknowledge the complexity of the situation that the ethical theory doesn't always explain," he notes. "There's the sociologic reality of being ill with a chronic disease and being dependent on somebody else, whose own life is affected by your illness."
The patient and patient caregiver relationship is often one of reciprocity, Fins notes, which further supports the need for acknowledging and valuing the caregiver. For example, the caregiver may depend on the patient for "love, affection, or somebody to talk to."
"The dependent patient might be immobilized with a malady, but they may be cognitively intact. Maybe they do the checkbook that the other person can't do; you know, there's all kind of variations on this theme," Fins explains.
In addition to the ACP, the position paper has been endorsed by 10 medical professional societies: Society of General Internal Medicine; American Academy of Neurology; American Academy of Hospice and Palliative Medicine; American College of Chest Physicians; American College of Osteopathic Internists; the American Geriatric Society; American Medical Directors Association; American Thoracic Society; Society of Critical Care Medicine; and the Endocrine Society.
Patients' needs come first
In the paper, the first ethical guideline states: "Respect for the patient's dignity, rights and values should guide all patient-physician-caregiver interactions."
In practice, "Clinical encounters should be patient-centered, allowing for maximum appropriate patient autonomy and participation in decision-making," the paper states.
"Family caregivers may view themselves as partners with the physician in the care of the patient, especially as the patient's illness progresses and the caregiver's role increases. In this situation, there is a risk that communication about care will shift prematurely to the caregiver, even though the patient is capable of making decisions. The focus should remain on the patient," the paper states.
However, the paper acknowledges that "the health preferences of patients can evolve over time" and also that some patients "may wish to defer decisions to the caregiver."
Another practice guideline under this ethical guidance is: "The physician should routinely assess the patient's wishes regarding the nature and degree of caregiver participation in the clinical encounter and strive to provide the patient's desired level of privacy."
Still, the paper advises physicians that provisions of the Health Insurance Portability and Accountability of 1996 Act (HIPAA) "should not be viewed as a barrier to communication." However, privacy should be maintained to the extent indicated by the patient.
"These private exchanges can be especially important for addressing concerns about whether a caregiver is acting in the patient's best interests. Private exchanges may include determining whether the patient feels safe and well cared for; eliciting fears or concerns; obtaining the names of other family caregivers the patient might want the physician to contact; and determining whether the patient requires legal or social services," according to the paper.
The paper also advises physicians that patients should be evaluated for signs of all types of abuse, including neglect and physical, emotional, or financial abuse and they should be familiar with the relevant states laws where they practice pertaining to abuse.
"Excellent communication [is] fundamental"1
A second ethical guidelines states; "Physician accessibility and excellent communication are fundamental to supporting the patient and family caregiver."
An associated practice guideline to this guidance is: "The physician should strive to ensure that the patient, family caregiver and other family members have a common, accurate understanding of the patient's condition and prognosis."
According to the paper, "Caregivers cite access to clear, consistent, understandable information about the patient's medical condition and treatments as the single most pressing unmet need during ICU hospitalizations."
The paper also addresses the possibility of disagreements between the patient and the caregiver. And while measures such as counseling or an ethics consult may be considered as alternatives, the first approach should be to try to understand the nature of the disagreement, Fins says.
"I think our emphasis is really on trying to understand . . . the roots of the problem and [to] attack it there," he says.
And, the paper states that "while patients have the right to make decisions regarding their medical treatment," if there is a disagreement between patient and caregiver, then patients "may need to consider other caregiving alternatives if the burden of those decisions is too much for the family caregiver."
Another practice guideline is: "Physicians should encourage discussion of the patient's health values and advance care planning so the family caregiver and physician have a clear understanding of the patient's wishes."
According to the paper and Fins underscores this point advance care planning makes it much easier for everyone to understand the patient's values and goals of care to facilitate decision-making. It also makes disclosing patient health information to surrogates easier as it relates to HIPAA requirements, he says.
Physicians also need to be mindful of another piece of information from the paper, which is that "Patients generally wait for the physician to initiate advance care planning discussions."
Other ethical guidance
Emphasizing the importance of the patient caregiver role to the health care team, the paper provides this ethical guidance: "The physician should recognize the value of family caregivers as a source of continuity regarding the patient's medical and psychosocial history and facilitate the intellectual and emotional transition to the end stage of serious chronic disease."
Likewise, under the rubric of the reciprocal relationship, Fins notes that the caregiver and the patient have mutual responsibilities to each other.
"As my health care agent, you have an obligation to do what my wishes are as best you understand them, but I have an obligation to tell you what my wishes are before I lose capacity," he says.
This reciprocity points to the importance of relationships in patients' lives for those who do have family caregivers, so it is important to acknowledge that such patients do not live in isolation.
"And those other individuals influence the care milieu that is of interest to the patient's doctor," Fins says.
[Editor's note: For additional ethical and practical guidance on managing the patient-caregiver-physician relationship, see the entire document on the ACP Web site at www.acponline.org.]
Joseph J. Fins, MD, Vice Chair of the American College of Physicians' Ethics, Professionalism and Human Rights Committee; Director of Medical Ethics at New York-Presbyterian Weill Cornell Medical Center in New York City. E-mail: firstname.lastname@example.org.