An ethical approach to considering family presence during COVID-19

Introduction

The COVID-19 pandemic has necessitated a temporary shift in how healthcare organizations support family presence (visitors). While most healthcare settings have traditionally welcomed family members as partners in care with open access to the facility and the patients therein, COVID-19 has prompted risk mitigation strategies that have challenged usual policies around family presence. This tension can pit values such as overall community safety against values such as Patient and Family-Centred Care (PFCC). As such, family presence approaches and policies within healthcare environments during a pandemic must be viewed from an ethical lens, which includes ensuring that the patient voice helps guide decision-making.

Early, regular, and robust consultation with patient and family advisors has been a key input into temporary COVID-19 policies and approaches to family presence (note 1) at Kingston Health Sciences Centre (KHSC). This article will highlight a few examples of how patient partnership can support a healthcare organization’s application of an ethical framework for decision-making about family presence during a pandemic.

An ethical framework for decision-making within a pandemic plan

Kingston Health Sciences Centre is an academic tertiary care hospital located in Kingston, Ontario. Created in April 2017 through an integration between Hotel Dieu Hospital and Kingston General Hospital, KHSC provides acute care services on two sites to approximately 500,000 people from across Southeastern Ontario and is formally affiliated with Queen’s University.

The hospital’s pandemic plan includes an ethical framework for decision-making. ¹ This ethical framework includes explicit values to guide KHSC’s response to COVID-19 including: respect for autonomy, duty to provide care, protection of the public from harm, proportionality, stewardship, transparency, and patient-centred care. While in usual times KHSC embraces PFCC, in a pandemic the ethical obligations are primarily to the patient as a result of both crisis and limited resources)

Healthcare organizations in Canada, particularly in the past decade, have enthusiastically embraced PFCC. Kingston Health Sciences Centre has embedded the core principles ² of PFCC into its operations. At the heart of PFCC is a belief that patients, families, and healthcare providers are one team, collaborating as partners in care. Fundamental to PFCC is that patients choose how their families (note 2) will participate in care and decision-making. A natural extension is that many healthcare facilities, including acute care hospitals, have eliminated visiting hours entirely, instead moving to family presence policies whereby patients—not the institution—make decisions about when and how many family members will be present and/or participating in care and decision-making. The COVID-19 pandemic has introduced new challenges to patient choice as it comes to family presence, which in turn may challenge family participation in care. Because PFCC is a foundational element of KHSC’s philosophy, a critical component of operationalizing pandemic-specific policies has been to incorporate patient and family advisors as key partners in all consultation and decision-making about COVID-19.

A core ethical value: Patient-centred care

In early March before provincial lockdowns began, a group of 10 patient advisors came together at a local coffee shop with the Lead for PFCC and the Vice-President of Mission & Strategy Integration and Support Services (the executive accountable for PFCC) at KHSC to proactively consider scenarios that might necessitate access and/or family presence restrictions. Their early advice helped to prepare the organization proactively with policy considerations, communications approaches, and messaging.

Thinking through potential “restrictions” scenarios with this group before they were ordered by the Ministry of Health or initiated through KHSC’s Incident Command served to identify particular vulnerabilities that needed to be considered in advance to improve KHSC’s state of pandemic readiness. Advisors highlighted insights such as that the parents of children with very complex medical needs were an “at-risk” group for potential entrance challenges, particularly given the types of vehicles required to transport children with assistive devices and the physical barriers at various entrances that would have been prohibitive for ease of drop-off from specialized vehicles. Similarly, inpatients on a mental health unit were identified as potentially at risk of further isolation due to usual policies limiting access to electronic communication devices while admitted. Patient advisors noted that reduction in access to in-person visits might leave this patient population with few options to stay in touch with loved ones, further isolating them at any already difficult time. This helpful information allowed for early problem-solving with clinical units to support vulnerable populations thoughtfully and serve as examples of how KHSC has collaborated to address elements of the ethical domain of patient-centred care.

This subgroup of advisors has remained a key ad hoc advisory body advising on adjustments to family presence policies, programs to support patients who need help staying in touch with family members, communication, and internally developed electronic screening/contact tracing and tracking tools. In addition, the Patient & Family Advisory Council (PFAC) meets on a monthly basis and receives regular updates about COVID-19-related impacts to continue to bring the patient voice to KHSC’s approach.

In Ontario, the provincial Chief Medical Officer of Health directed all hospitals in March 2020 to implement restrictions to control risk of spread of COVID-19. ³ This direction dramatically reduced family presence for inpatients and caregiver support for outpatients. Many hospitals—particularly in areas experiencing a surge of COVID-19 patients within their facilities—restricted family members from their sites entirely, while others tightly limited numbers of family and/or situations wherein a family member or caregiver was authorized to be present with the patient (eg, authorizing a caregiver to attend with an outpatient only if safe care could not otherwise be provided). This directive was rescinded in late May and replaced with recommendations that hospitals once again facilitate access for those deemed essential partners in care. While many Ontario hospitals have resumed some family and caregiver presence, new requirements around physical distancing and other infection control imperatives, contact tracing, and screening have necessitated ongoing limits to family presence. Resurgences of COVID-19 in specific communities may also prompt further restrictions a one lever to try to limit spread within care settings.

These restrictions significantly challenge healthcare organizations’ usual approaches to collaborating with and ensuring participation by family members and have been a source of tremendous upset for patients and families alike. New, creative, and clearly communicated alternatives to usual family presence are necessary. Examples include communicating clear alternatives to in-person participation in ambulatory visits by family members. This can include offering care through virtual means where appropriate, inviting patients to include a family member on speaker phone during a clinical interaction, and developing formal supports for inpatients who may not have access to their own device (eg, mobile phone or tablet) for ensuring ongoing family participation in care. At KHSC, a Staying Connected program was created to support inpatients who need help using a device or who do not have their own device for family visits and communication. This program, informed by patient advisors and facilitated by volunteers, social work, and spiritual health, ensures that an appropriate support attends the patient with a clean, charged device with which they connect the patient and their loved one. These types of approaches help to support patient-centred care in a pandemic environment and help to facilitate communication between patients, families, and clinical teams essential for partnership for collaborative decision-making and participation in care.

Considering proportionality

A key issue in healthcare during COVID-19 has been the application of the ethical domain of proportionality, whereby an organization aims to frame its responses proportional to the good that can be achieved against the harm that may be caused by any decision. Pandemic family presence policies require careful contemplation of proportionality. The key test is to review outcomes and consequences to understand whether restrictions to family presence result in greater harm (eg, isolation, anxiety, depression, fear, or deterioration) than the intended good (ie. reducing risk of COVID-19 spread to patients and staff or community with a goal of keeping the healthcare organization safe and fully operational).

In late May with input from care teams, patient advisors, and through patient relations feedback, KHSC made a decision to identify one essential partner in care for every inpatient and facilitate a process whereby this registered family member is provided with regular access to their loved one. An in-house electronic tool was created to register and track family members to support ease of entry, screening, and contact tracing. Safety guidelines for visiting were created in partnership with patient advisors. ⁴ While this is by no means a return to usual family presence, this approach has allowed KHSC to apply the principle of proportionality in the context of family presence during a pandemic. Regular review and assessment, informed through direct communication with patients and families, including through patient relations processes, is vital to ensure continued updates to processes, policies, and procedures.

Transparency

Patient feedback has also directly contributed to adjustments at KHSC to the family presence policy for patients who are imminently dying. During COVID-19, the policy allows for two family members to be present with an imminently dying person. Where a family circumstance suggests that two would be unduly egregious (eg, a dying patient has a spouse and three children), clinical units have had the ability to authorize additional registered family members within reason. While the intention of this flexibility was laudable, it resulted in such variation in practice that some units may have been unduly advantaged by individual interpretation of this approach, with others feeling disadvantaged. Patient feedback directly contributed to a protocol to provide greater clarity about application of this policy, along with a clear escalation protocol that necessitates a review of additional options—including exploration of dying at home and virtual visits—to better support the patient/family. The new protocol also ensures greater transparency about how decisions to make an exception to the usual number of two will be considered. This type of ongoing evaluation of outcomes and consequences and subsequent adjustment when necessary is a critical step in an ethical approach to decision-making.

Duty to provide care and protection of the public from harm

Patient voice can also be included successfully in a healthcare organization’s formal pandemic organizational structure. As part of the Incident Command for KHSC’s COVID-19 response, the Chair of the hospital PFAC is a full member of the clinical operations table that meets on a weekly basis to operationalize clinical deliverables under the COVID-19 plan. This group oversees planning and implementation of services changes (eg. the government-mandated ramp down of elective care in March 2020 ⁵ and the subsequent planned resumption of elective services in late May ⁶ ) for recommendation to Incident Command. At each meeting, this patient advisor is given dedicated time on the agenda and contributes patient perspective to the deliberations and facilitates two-way communication between the Clinical Operations table and the PFAC.

Given that a major area of focus for the clinical operations table has been to plan, implement, and monitor the safe resumption of elective services while managing screening, contact tracing obligations, and physical distancing requirements, a significant value tension in these conversations is the balance between duty to provide care (ie, resume services to the maximum number of patients) and protection of the public from harm (ie, reduce overall risk by limiting access to the smallest possible number of persons other than patients and staff). Patient partnership serves as an essential component of stakeholder consultation in this process to ensure that due consideration is given to patient and family needs when contemplating clinical service delivery and is key to applying a principle-based approach to decision-making.

Conclusion

The COVID-19 pandemic has required temporary restrictions to family presence within healthcare environments, restrictions that may need to ebb and flow depending on COVID-19 prevalence over the coming months. Embedding patient advisors in decision-making contributes measurably to healthcare organizations. In the context of COVID-19, patient partnership is one helpful approach to contribute to thoughtful contemplation of emerging ethical issues around family presence and will support the application of an ethical framework for decision-making during a pandemic.