Family presence during a pandemic: guidance for decision-making family presence during a pandemic: guidance for decision-making
- Collection:
- Health Policy and Services Research
- Author(s):
- Dokken, Deborah L., author Johnson, Beverley H., author Markwell, Hazel J., author
- Contributor(s):
- Institute for Patient and Family-Centered Care, issuing body. New York State Health Foundation, issuing body.
- Publication:
- [McLean, VA] : Institute for Patient and Family-Centered Care, [2021]
- Language(s):
- English
- Format:
- Text
- Subject(s):
- Decision Making Family Pandemics COVID-19 New York United States
- Genre(s):
- Technical Report
- Abstract:
- Although families may be defined in different ways and different terminology may be used (e.g., caregiver, care partner), their presence is essential to the care of patients in hospitals and other settings of care – and their role is distinct from that of visitors. For years, the Institute for Patient- and Family-Centered Care (IPFCC) has championed family presence and participation, most notably through its Better Together campaign, launched in 2014 and expanded across Canada through IPFCC’s partner, the Canadian Foundation for Healthcare Improvement (CFHI). The campaign made significant progress in 1) changing the concept of families as “visitors” to recognizing their importance to the quality, experience, safety, and outcomes of health care, and 2) reducing restrictions on the presence and participation of family members in health care settings (Dokken et al., 2015; Dokken et al., 2020). However, in March 2020, faced with the overwhelming COVID-19 pandemic, hospitals, health systems, outpatient settings, and nursing homes in the United States, Canada, and other countries around the world felt it was necessary to restrict “visitors” and family members to stop the spread of the virus and ensure the safety of staff, patients, families, and communities. Generally, families were not allowed to be present with loved ones; their ability to participate in care, care planning, and decision-making was severely limited. While this initial response is understandable given the significant clinical uncertainty which existed at the beginning of the pandemic, it is crucial to revisit it now that we know so much more about the clinical context. Serious consequences or harms of these restrictions for patients, for their families, and for health care professionals are increasingly coming to light. For example, articles in the New York Times reported: “Clinicians and hospital staff said keeping families away had been among the darkest experience of their professional lives. The restrictions run counter to a hospital’s desire to keep patients and families together, not only for the salutary effect of something as simple as a hand held, or a chair pulled close to a bed, but because having a relative present can ease the workload of the medical team. It can also provide crucial information that a confused patient may not be able to offer.” (Hafner, 2020) This paper provides a broad context with guidance for decision-making in the future – whether for additional surges in COVID-19 or for other public health crises. It will (1) summarize the evidence and history as well as relevant concepts and principles from PFCC and bioethics and (2) based on that, provide new tools for collaborative decision-making, with the goal of achieving a balance between benefits and harms among different groups impacted in the short and longer term.
- Copyright:
- Reproduced with permission of the copyright holder. Further use of the material is subject to CC BY license. (More information)
- Extent:
- 1 online resource (1 PDF file (21 pages, 15 unnumbered))
- Illustrations:
- Illustrations
- NLM Unique ID:
- 9918402186706676 (See catalog record)
- Permanent Link:
- http://resource.nlm.nih.gov/9918402186706676