“Why Can’t I Be There?” Ethics Regarding Restrictions on Visitation/Family Caregiver Presence

Authors, Case History & Commentary

Kari L. Esbensen, MD, PhD, FACP
Assistant Professor of Medicine
Senior Faculty Fellow (Emory Center for Ethics)
Emory University School of Medicine
Atlanta, GA

Amy K. Holbrook, MD, FACP
Associate Program Director, Residency Program
Abbott Northwestern Hospital
Little Canada, MN

Editor

Lois Snyder Sulmasy, JD
Director
Center for Ethics and Professionalism
American College of Physicians
Philadelphia, Pennsylvania

Ethics case studies are developed by the American College of Physicians Ethics, Professionalism and Human Rights Committee and the ACP Center for Ethics and Professionalism. The series uses hypothetical examples to elaborate on controversial or subtle aspects of issues in the College's Ethics Manual or other College position statements. The current edition of the ACP Ethics Manual and additional case studies and College policy on ethics, professionalism, and human rights issues are available at https://www.acponline.org/clinical-information/ethics-and-professionalism or by contacting the Center for Ethics and Professionalism at 215/351-2839.

CASE HISTORY

Mr. Turner is a 69-year-old man with mild cognitive impairment, poor hearing despite using hearing aids, anxiety, insulin-dependent diabetes, and newly diagnosed pancreatic cancer. Two weeks previously, in January 2021, he had been hospitalized for diabetic ketoacidosis, intermittent weakness, and painless jaundice, and he was found to have a mass in the head of his pancreas. While in the hospital, he underwent endoscopic biliary stent placement and ultrasound guided biopsy of the lesion. He and his wife were told that frozen pathology done in the OR was positive for malignancy and that he should consult with an oncologist in two weeks, once the final pathology was completed. During his hospitalization, COVID-19 visitor restrictions had prevented his wife from accompanying him at the bedside. Although the medical team tried to update Mrs. Turner frequently, she noted that Mr. Turner seemed confused about what they were telling him and was unable to relay information to her that matched what they were telling her. Both Mr. Turner and his wife expressed feeling great distress at being separated while he was being told that he likely had a serious cancer diagnosis.

Today, Mr. Turner is seeing his medical oncologist outpatient for the first time. On arrival to the clinic, Mr. Turner and his wife are terribly distressed to learn that she will not be able to accompany him for the visit. Mrs. Turner is instructed to return to her car or wait outside. She repeatedly asks her husband to call her on speakerphone during the visit, so that she can hear what the doctor has to say. She is understandably dismayed when Mr. Turner returns to the car over an hour later without having called her. When asked what he was told by the doctor, Mr. Turner replies, “He said I need to see another doctor about the cancer,” and he hands his wife the referral to a hepatobiliary surgeon. When pressed further for details, he repeatedly responds, “I don’t know…I couldn’t understand much of what he said through his mask.” When asked why he or the doctor didn’t call her during the visit, he says, “I don’t know…I forgot. It was all very stressful, and he seemed like he was in a hurry. I was just overwhelmed. I’m sorry.”

During the visit, Dr. Richmond had tried to carefully explain the findings of the pathology report and recent imaging completed in the hospital. He explained that Mr. Turner’s cancer was locally advanced, but there was no evidence of metastatic disease, so it was possible that he would be a good candidate for surgical resection followed by chemo-radiation or neoadjuvant therapy followed by surgery. However, before making that decision, Mr. Turner would need to see a hepatobiliary surgeon to discuss his options. Dr. Richmond also explained that Mr. Turner should meet with his endocrinologist and a dietician as soon as possible to help optimize his nutrition and glycemic control prior to treatment.

Asked if he had any questions about next steps, Mr. Turner responded, “I don’t think so,” so Dr. Richmond assumed that he had done a good job of explaining everything clearly. Mr. Turner, however, did not ask questions during the visit because he felt completely overwhelmed. He kept thinking, “I wish my wife were here to help me get through this. She would know what to ask. She could help me understand and remember what he is saying.”

Commentary

During the COVID-19 pandemic, unprecedented restrictions were placed upon the ability of family caregivers/loved ones (“visitors”) to accompany patients as they received care in medical settings – whether hospitalized as inpatients, residing in long-term care (LTC) facilities, or presenting to outpatient clinics or surgical centers for care. Early in the pandemic, such restrictions were deemed necessary to protect patients and healthcare workers (HCWs) in the face of a novel pathogen with unknown transmission risks, high morbidity/mortality, overwhelmed healthcare systems, and limited personal protective equipment (PPE). As time went on, however, clear evidence emerged regarding the unintended harms of visitor restrictions, while evidence demonstrating the necessity of visitor restrictions for protecting the health of patients and HCWs remained lacking (1). Nonetheless, in many settings, stringent visitor restrictions remained in effect more than 2 years following the start of the pandemic, raising ethical concerns about determining the proper balance between protecting public health and fulfilling clinicians’ ethical obligations to individual patients (1,2). It seems that inadequate attention was paid to the “public health ethical imperative to choose the least restrictive means necessary to achieve a critical societal goal,” which should have led to more rapid easing of visitor restrictions, once better understandings of COVID-19 emerged and the availability of PPE and effective vaccines made it safe to allow visitors (1). Even now, many visitor policies are not as accommodating as they were pre-COVID; in some care settings, access remains restricted to one “visitor” with limitations regarding which patients can be accompanied by a loved one. Such restrictions still threaten patient- and family-centered care.

Unintended harms of restrictions on caregiver presence (“visitor” restrictions)

Throughout the COVID-19 pandemic, many physicians and other care-team members raised alarm about the unintended harms suffered by patients and LTC residents who were denied needed in-person support from family caregivers (Box 1), as well as the unintended harms imposed on the clinicians caring for them (Box 2) (1,3-8). A recent American College of Physicians (ACP) position paper discussed the ethical concerns surrounding visitor restrictions in inpatient and LTC settings (1). Here, we explore how these ethical considerations apply to outpatient settings, where the majority of care is provided. This case is presented not only to reflect upon ethical practices that should have been adopted regarding COVID-19 visitor restrictions, but as an opportunity to think about how best to respond to the next public health emergency, where similar issues may arise. “Given the significant harms caused by limiting family caregiver support, particularly for vulnerable patients,” ACP maintains that there should be a “strong presumption in favor of preserving opportunities for caregiver support/visitation, including during public health emergencies” (1). When public safety concerns (temporarily) override this strong presumption, appropriate accommodations must be implemented to ameliorate harm as much as possible, especially among vulnerable patient populations.

BOX 1 UNINTENDED HARMS OF RESTRICTIONS ON CAREGIVER PRESENCE (“VISITOR” RESTRICTIONS) FOR PATIENTS Mr. Turner’s case highlights that restricting the presence of family caregivers often imposes unintended harms on patients.  In the outpatient setting, such harms include: Distress, anxiety, and dissatisfaction with care among patients and loved ones (1,13) Poor communication and avoidable misunderstandings (11,12) Inadequate support to ensure equitable care for persons with disabilities or communication barriers (1,11,12,14, 15) Unsupported, delayed, and/or impaired medical decision-making (1,3,4) High risk for discontinuity of care (e.g. miscommunication, redundant tests, and conflicting or duplicate treatments) Pursuing inappropriate care (e.g., care not aligned with patients’ values, preferences, and goals) Loss of efficiency/increased costs when repeated visits become necessary to reiterate information previously missed due to inadequate information-sharing with caregivers (9) Delays in, or poor adherence to, treatment plans or recommended follow-up, which can significantly affect patient morbidity and mortality Patients becoming “lost to follow up” In the inpatient or long-term care setting, additional harms for patients include: Social isolation, loneliness, and/or feelings of abandonment (1,3,7) Dying alone (1,8)

Honoring the value of family caregivers as important partners in patient care

Family caregivers often play crucial roles in patient care, emotional support, and medical decision-making, especially for those patients who are particularly vulnerable or dependent upon others (1,9,10). Family “may refer not only to traditional relationships … but also to [other loved ones,] friends, partners, paid caregivers, or other nontraditional relationships, as defined by the patient” (9). A central feature of ensuring “patient- and family-centered care” is allowing and enabling patients to involve family caregivers in their medical care and/or decision-making to the extent they choose (9).

“Family-centered care” acknowledges that family caregivers are often essential partners in medical care, “supporting and caring for patients during and between encounters with the health care system” (9,10). Caregivers often help ensure continuity, timeliness, and efficiency of care by reminding patients of, or reinforcing, communication they have had with their care-teams; navigating (sometimes complex) recommended follow-up appointments and/or coordination of care; improving adherence to agreed-upon care plans, medication regimens, diets, etc.; and relaying concerns or difficulties that arise either between visits or during future encounters. Family caregivers can enhance informed decision-making by facilitating good communication; advocating for what is most important to patients by bringing attention to their psycho-social-spiritual, as well as medical, needs; and providing emotional support to enable patients to better advocate for themselves during stressful situations.

BOX 2 UNINTENDED HARMS OF RESTRICTIONS ON CAREGIVER PRESENCE (“VISITOR” RESTRICTIONS) FOR CLINICIANS Restricting the presence of family caregivers often also imposes unintended harms and burdens on clinicians. In the outpatient setting these include: Added time and effort required to inform caregivers and engage them in decision-making and care Increased support required to accommodate for the disabilities or communication challenges of unaccompanied patients Additional burdens in obtaining appropriate informed consent or coordinating complex care Misperceptions about what the patient understood or the patient’s emotional response to a given clinical encounter, which can undermine efforts to provide patient-centered care Moral distress, e.g., feelingcomplicit in enforcing policies one perceives as harmful to patients and families (1,4,5) Professional frustration and dissatisfaction; feeling under-supported in providing the extra time and effort needed to ensure patient-centered (1,5,8) In the inpatient or long-term care setting, additional harms for clinicians include: Added time and effort required to compensate for care often provided by loved ones (e.g., providing emotional support and supporting daily activities [e.g., feeding, assisting mobility, reorienting the patient]) (1,10) Profound emotional and moral distress in accompanying patients through severe illness or dying alone (1,4,5,8)

 

When caregivers are not allowed to be present during clinical encounters, clinicians must make additional efforts to fulfill their duties to value, respect, and support family caregivers through careful communication and including them in informed decision-making (1,16). In Mr. Turner’s case, he and his wife clearly desired her full engagement in his care, yet no accommodation—not even a phone call during his oncology visit—was offered to allow her to provide needed support, nor could she provide and gather information crucial to his care. Importantly, like Mr. Turner, patients who most need caregiver presence are often least able/empowered to advocate for themselves to request needed accommodations or exemptions from visitor restrictions. Therefore, the onus must rest upon clinicians to assess patients’ desires/needs for caregiver presence and proactively offer strategies to include loved ones in care, even if they can only participate remotely.

Particularly vulnerable patient populations

Patients who are particularly vulnerable to being harmed when family caregivers are not present or engaged include persons who suffer from disabilities (14); communication challenges, including impaired hearing or speech, limited English proficiency, or poor health literacy (11,12,15); cognitive or psychiatric impairments (9); or other conditions that make them particularly reliant on caregivers (1). These are all indicators that patients may require family caregiver presence during clinical encounters to ensure they receive equitable care. Mr. Turner’s hearing and cognitive deficits were important barriers to his being able to comprehend the information shared by Dr. Richmond—barriers that likely could have been overcome or ameliorated by his wife’s involvement in the conversation.

Especially when the emotional impact of information being conveyed (e.g., receiving bad news about a newly diagnosed serious illness) or the complexity of medical decisions required (e.g., choosing whether to undergo high-risk/high-morbidity treatment/surgery) is overwhelming, the support of family caregivers may be essential to enable decision-making that truly honors patient autonomy. Mr. Turner is experiencing both of these added vulnerabilities and would benefit immensely from his wife’s support in decision-making. Caregivers can help empower patients to align medical care with their own values, goals, preferences, and needs. The concept of “relational autonomy” acknowledges that most patients make important medical decisions not as isolated individuals, but as persons embedded within meaningful relationships that shape and strengthen their notions of their own best interests (16).

Duties of physicians in responding to patient needs for caregiver support

To help overcome some of the aforementioned harms, particularly among vulnerable patients, clinicians must take a proactive approach to support and clearly communicate with family caregivers (1). They should ask patients whether, and to what extent, they want family caregivers included in conversations and decision-making about their care (9) and how best to achieve this (e.g., phone/videoconferencing during the visit; accommodations/exceptions to have the caregiver physically present; or written communication). Clinicians should provide clear “after-visit summaries” that outline needed follow-up, provide fully reconciled medication lists, and reiterate information conveyed during the visit, particularly when patients may be emotionally or intellectually overwhelmed.

“Clinicians must be particularly attentive to patients who might need additional support. For patients with disabilities, physicians must ensure that a designated support person can be present, as required by disability-rights law. For vulnerable individuals without legally recognized disabilities, physicians should advocate to allow family caregivers to remain present” (1). Dr. Richmond should have tried to ascertain whether Mr. Turner needed his wife’s presence to help ensure adequate and equitable care. Mr. Turner’s desire, and need, for his wife’s support likely would have been clear with minimal questioning. Dr. Richmond, therefore, should have made the necessary accommodations to allow her to be present or, at minimum, should have called her during the visit to include her in care.

There are certainly daunting challenges for clinicians attempting to include family caregivers in communication to ensure that they are able to appropriately participate in care decisions. Beyond the demands of busy outpatient schedules, clinicians must attempt to “close the loop” so that caregivers are aware of changes in care-plans, especially if they were unable to attend a visit in-person. Additionally, the longitudinal nature of outpatient patient-physician relationships brings both opportunities and challenges, with ongoing need for communication, updates, and questions. The increasing use of patient portals and other technologies to reach clinicians presents both opportunities to include caregivers as well as risks for confounding communication with patients and families. These concerns highlight the importance of being proactive in including family caregivers in real-time during clinical visits as much as possible.

Obligations of policymakers and healthcare institutions to support physicians in discharging their duties

Most clinicians work within healthcare organizations where they are subject to policies and practices enacted by others. Such policies should continually be reassessed based upon the best available evidence of benefits and harms to determine whether policies/practices strike the right balance of protecting public health while imposing the least onerous restrictions possible upon meeting the needs of individual patients. For example, could appropriate infection prevention precautions, including use of PPE, allow family caregivers to accompany patients without risking the safety of themselves, other patients, or HCWs? As important stakeholders, clinicians should be included in policy development to ensure that their ethical duties toward their individual patients are not (unduly) subverted by the aim of protecting public health (1). Such policies should recognize the invaluable roles of family caregivers as partners in patient care and maintain a strong presumption in favor of maintaining caregiver presence whenever feasible (1,9).

When/if visitor restrictions are deemed necessary, “health institutions must ensure that clinicians are sufficiently supported in implementing their duties of care” (1,2). This might include providing the infrastructure (technology, support staff, and clinical time) required to ensure clinicians can easily implement strategies to engage family caregivers in care, even when they cannot be physically present. Physicians should be empowered to grant appropriate exemptions from visitor restrictions for patients they deem to particularly need in-person caregiver support. Finally, readily accessible, fair, and transparent appeals processes should be provided to enable caregivers to request exemptions when their loved ones require extra support (1,3).

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References

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