Documentation of Caregivers as a Standard of Care

The COVID-19 pandemic has highlighted a national caregiving crisis that existed long before 2020.¹ More than ever before, the approximately 6 million Americans who serve as family caregivers to patients with cancer are an essential extension of the health care team.² Caregivers' responsibilities are growing; today's shorter hospital stays and shift toward increased outpatient care have left them with significant responsibilities and little to no preparation for this role. As a result, caregivers are at increased risk for psychiatric morbidity, including anxiety and depression,^3-7 and physical health conditions, including poor immune functioning, cardiovascular disease, and sleep difficulties.^8-13 This significantly affects their capacity to provide high-quality care to patients and can lead to poor bereavement outcomes for those caregivers whose loved ones die.¹⁴

This distress commonly experienced by caregivers has the potential to be mitigated or prevented with proper psychosocial support. However, too often, access-to-care barriers interfere with caregivers receiving critical support services. Although there are many systemic contributors to caregiver underutilization of mental health services, in this commentary, we highlight the importance of establishing an infrastructure to facilitate the screening and support of caregivers. Specifically, we argue that streamlining documentation procedures is an addressable barrier to improving caregiver care. We propose that standardizing the establishment of separate medical records for caregivers at the time that patients' records are generated will facilitate the provision of the support that caregivers often need to maintain their role as fundamental members of the patient care team.

The benefits of providing psychosocial care to caregivers from the time of diagnosis through bereavement are vast and well-documented.^15-19 Formally supporting caregivers has the potential to improve caregiver mental and physical health, to improve patient outcomes, and to reduce the financial toll of care in the long-term.^15-17 Over the past decade, there has been a notable increase in the development of psychosocial interventions focused specifically on addressing the needs of cancer caregivers.²⁰ This has been driven, in part, by funding opportunities and recognition from major health organizations that supporting family caregivers is a critical component of patient-centered care.^21-25 As a result, there has been significant progress in moving the state of the science of psychosocial support for caregivers forward, and there is increased recognition that meeting caregivers' support needs is critical.

Despite these developments, standardized documentation of caregiver identity in medical institutions is limited. Currently, the only regulations mandating routine documentation of caregiver information are through the Caregiver Advise Record and Enable (CARE) Act, which has three main provisions, requiring hospitals to: (1) record the name of a family caregiver on the medical record of the care recipient who is admitted for treatment, (2) inform the family caregiver when the care recipient is to be transferred or discharged, and (3) provide the family caregiver with education and instruction of the medical tasks they will need to perform for the patient at home. To date, the CARE Act has been signed into law in more than 40 states, the District of Columbia, Puerto Rico, and the US Virgin Islands.²⁶

Although the CARE Act has led to the addition of caregivers' contact information in hospitalized patients' medical records, there is no consistent or specified location for this or any other caregiver-related data, nor does it apply in the outpatient setting. Without standards for how and where to track information about caregivers, significant challenges emerge. For example, notes from support services (eg, social work) delivered to caregivers are often included in the patient's medical record. This practice presents several issues. First, both privacy and confidentiality of caregivers are potentially compromised when any such information is included in the medical record of patients. If caregivers are in receipt of support services from providers who bill (eg, psychologists) without the patient present for the encounter, placing that note in the patient's medical record assumes that the patient is billed for the services and can read about what was discussed when accessing their own records. If the patient dies, continuing to document and bill under the patient's record is more complicated and leads to the following questions: Where should bereavement outreach, screening, and support encounters be listed when the caregiver does not have their own record? If a bereaved caregiver expresses suicidal ideation during a condolence call, where should this be documented? If notes about caregiver encounters in bereavement are placed within the deceased patient's record, what happens if an individual appointed to access the deceased patient's records is different from the primary caregiver (eg, the legal executor of their estate)? That individual may then be able to read about the caregiver's bereavement struggles, thus compromising the caregiver's privacy. Additionally, patients' medical records are accessed by numerous medical and administrative professionals, including representatives from legal and financial entities embedded within the health care system. Moreover, locating caregiver-specific data within a large medical record is challenging, as patient records do not routinely have a specific section or tab devoted to caregivers.

The standardized creation of caregiver records would address these issues. At the time that the record is created, caregivers could be provided with a Notice of Privacy Practices, which would clarify how caregivers' information is recorded and used. Similar to patient medical records, caregiver records would be accessed only by health care professionals who provide them with services or support. Routine establishment of caregiver records would also allow for clinical trial enrollment to be centralized and tracked, which is increasingly important as caregivers are now commonly included as participants in clinical studies. Perhaps most significantly, it would facilitate our ability to identify caregivers in need through screening initiatives.¹⁹ Given the resource limitations that oncology practices and institutions face, screening would allow for identification of caregivers truly in need of psychosocial support so that we could triage service delivery across our already burdened health care system.^19,27

For these reasons, we believe that creating a record that includes, at the minimum, key caregiver attributes (eg, demographics and contact information) outside of patient medical records should be a standard of care. This could be done by an administrator whenever a patient identifies a caregiver, and the caregiver consents to the creation of such a record. Although each entity will need to determine the minimum criteria needed to create a record, it is likely that required fields are minimal (eg, caregivers' contact information). Once those data are collected, creation of a record should take only a few minutes—with a great potential return on quality of care. Such records can then be expanded if the caregiver receives referrals or services, with minimal burden on administrators. In effect, these records will serve as repositories for caregiver-related information, including potential distress and risk screening assessments, notes from psychosocial support providers (ie, social work and chaplaincy), information about clinical trial enrollment, and for encounters in the event of the patient's death. Having this unique, separate health care chart will address the barriers related to privacy, confidentiality, and ethics described above.

It will also help health care team members, who are increasingly reliant on caregivers' participation in care, reducing downstream burden on the system and the incurrence of unnecessary costs.^15-17 Improving continuity of psychosocial care through bereavement prevents feelings of abandonment¹⁹ and helps institutions maintain their reputations as caring and compassionate.²⁸ Ultimately, providing needed caregiver support will reduce the public health toll that unaddressed mental and physical health morbidity^3-13 is taking on the growing number of caregivers.²

There are many ways that such medical records can positively affect caregiving experiences. For example, at the time of a patient's diagnosis, caregivers can be screened for distress, establishing a baseline of psychosocial functioning. Continuous screening at set points in the cancer trajectory (eg, diagnosis, onset of recurrence, disease progression, and transition to noncurative care) can highlight changes in distress and the need for referral to psychosocial support services. With a record in place, notes about an initial evaluation and subsequent encounters with the caregiver can be kept confidential, protecting caregiver privacy. After the death of the patient, that medical record data could be used to advocate for the bereaved caregiver to qualify for disability so that they could have more than the three days off for bereavement leave that are traditionally granted by employers. The record can additionally be used to document condolence calls, bereavement risk screening, grief counseling sessions, support group participation, and referrals offered for community supports. This will allow for better coordination among the various clinicians who may be interfacing with the grieving family member, from members of the deceased patient's health care team to family psychosocial support providers. Such support ultimately can lead to a reduction in bereavement distress and earlier engagement in self-care and reduce the likelihood of cancer caregivers becoming the next generation of patients with cancer or other chronic or life-limiting medical illnesses.^29,30

The implementation of caregiver records would require attention to several issues, such as whether and how patient and caregiver records should be linked in any way. Institutions may thus initially pilot systematic creation of caregiver records to optimally refine procedures. In addition, regular screening of caregivers will require the capacity to provide or refer caregivers to services as needed. Although solving service capacity issues is beyond the scope of this commentary, we believe that establishing caregiver records is a critical foundational step, and without standardization of this practice, it will be impossible for us to productively address existing capacity issues. Caregiver records would allow for a more realistic understanding of the types and impact of services that caregivers use and help to identify those caregivers in greatest need of support and coordinate their care. Our key thesis is that without the infrastructure in place to store caregiver data, caregiver services and programs will not be sustainable or scalable. Although our current public policy landscape is shifting to acknowledge the critical role played by caregivers, without caregiver records, it will be impossible to manage the existing crisis of unmet psychosocial need among caregivers. As such, the creation of records for caregivers has the potential to address a key challenge that caregivers commonly report: that they, themselves, are not deserving of care.^31-33

AUTHOR CONTRIBUTIONS

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Documentation of Caregivers as a Standard of Care

The following represents disclosure information provided by the authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO’s conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/authors/author-center.

Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).

No potential conflicts of interest were reported.