Call for Compassionate Care Visitation Policy for Nursing Home Residents
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March 13th marks the tragic one-year anniversary of banning visitations for nursing home residents during the COVID-19 pandemic. Dignity Alliance Massachusetts is writing for your help in solving an overly restrictive compassionate care visitation policy which has created an isolation crisis for nursing home residents in Massachusetts and across the country. We seek your leadership to implement a national visitation policy that ensures critical human connections between nursing home residents and their family members and others in their support system. We need your assistance to eliminate related medical and psychological problems, including death, due to prolonged isolation.
Dignity Alliance Massachusetts is a large. statewide Massachusetts coalition dedicated to transformative change ensuring the dignity of older adults, people with disabilities, and caregivers. Dignity Alliance is committed to advancing new ways of providing long-term services, support, living options, and care while respecting choice and self-determination. Dignity Alliance works through education, legislation, regulatory reform, and legal strategies to realize this vision throughout the Commonwealth.
Problem
Terminating visitations for family members and other loved ones, including Ombudsmen, and temporarily halting Department of Public Health investigations, has created a void of watchful eyes and human connections resulting in an isolation crisis within the pandemic crisis. Yet, this tragedy goes largely unappreciated and poorly documented — resident deaths associate with isolation are not identified and tracked. The heart wrenching COVID-19 death toll for nursing home residents in Massachusetts is even higher than the reported 8,400+ — more than half of the total COVID-19 deaths in the state!
Even though federal guidance provides some flexibility for compassionate care visits during the pandemic, a nursing facility can still terminate visitations if a COVID-19 case (resident or staff) is identified or if the facility is in community designated as a hot zone. Official Massachusetts visitation guidance follows federal guidance which leaves much discretion to the facility.
There is strong evidence that extended isolation and loneliness can result in early deaths for nursing home residents. Families also note that their loved ones are suffering from mental, cognitive, and physical decline due to the lack of contact with family and friends. In addition, these personal connections normally supplement certified nursing assistant care which has been reduced during the pandemic, creating an urgent situation for more care, not less. This New York Times article (October 20, 2020) further demonstrates the human cost of maintaining strict and arbitrary bans on visitation — tragic outcomes suffered around the country and in Massachusetts: https://www.nytimes.com/2020/10/30/us/nursing-homes-isolation-virus.html?smid=em-share.
Additionally, this lack of adequate guidance can lead to failures of nursing homes to meet their obligations to accommodate individuals with disabilities. The Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act each protect residents with disabilities and entitle them to reasonable modifications and accommodations to ensure equal access to treatment. Nursing home residents who depend on family or caregivers for cueing and encouragement with eating or drinking are deprived of needed accommodations where overly restrictive visitation policies limit compassionate care situations to end-of-life situations.
Recommendations
There is precedent in Nebraska, Minnesota, Indiana, and South Dakota which have all found some success in supporting compassionate care visitations and can be used to build a national model. The Center for Medicare Advocacy recently released a report which includes information on these states, including hotlinks to their state websites – Geography Is Not Destiny: Protecting Nursing Home Residents from the Next Pandemic (https://medicareadvocacy.org/wp-content/uploads/2021/02/CMA-NH-Report-Geography-is-Not-Destiny.pdf) – page 31. Based on these reports and on the experiences of Massachusetts nursing home residents and their supports, we recommend these standards for visitation:
- Safe overall visitations are achievable through employing infection prevention protocols, social distancing, and limiting the number of visitors in the facility at any one time. The increase in vaccinations all promote opening up visitations.
- Nursing home owners and operators, including corporations, must not be permitted to impose arbitrary blanket bans on visitation.
- Require nursing homes to permit compassionate care visits to any resident experiencing physical, cognitive and/or emotional decline or at risk of such decline, or emotional distress.
- Ongoing visits must be allowed regardless of COVID status of the resident, facility and/or community.
- Frequency and length of visits must be based on the individual needs of the resident.
Closing
For the sake of nursing home residents in Massachusetts and across the country, we urge you to ensure compassionate care visitations, even if there is evidence of COVID-19 in the facility or the surrounding community is a hot zone. Restrictions put in place to mitigate the spread of COVID-19 must be balanced against residents’ need for increased socialization and visitation and their physical and mental well-being. Nursing home residents are depending on us – and you – to protect all their needs – physical and emotional alike.
We greatly appreciate your time and consideration of these issues and if you have any questions, please contact Paul Lanzikos, Dignity Alliance Massachusetts, paul.lanzikos@gmail.com.