Becoming a Compassionate Caregiver During the (COVID-19) Pandemic

Written by Jennifer Rose, CELA

Julian Gray Associates

As we enter the thirteenth month of the world-wide COVID-19 pandemic, the visitor restrictions on nursing facilities, while set to curve the spread of COVID-19 and keep nursing home residents safe, have had a severe impact on the mental and physical well-being of many residents and their family members and friends.  However, nursing home residents suffering the most from this isolation may qualify to receive compassionate care from certain family members and friends who qualify as Compassionate Caregivers pursuant to new guidance issued by the federal Centers for Medicare & Medicaid Services’ (CMS) and the Pennsylvania Department of Health.  This article will review the evolving guidance issued by the federal CMS and Department of Health regarding visits to residents to provide compassionate care and explain who qualifies for compassionate care and what steps you must take to qualify as a Compassionate Caregiver.

What is a Compassionate Caregiver?

Under CMS guidelines, a Compassionate Caregiver is an outside caregiver, certified and approved by a nursing facility, who may enter the facility to assist with care to a particular resident.  A Compassionate Caregiver is to be screened upon entry, must use appropriate Personal Protective Equipment, must follow appropriate hygiene safety protocols, and must limit their visit to a location designated by the facility, typically the resident’s room.  Generally speaking, a Compassionate Caregiver’s role is to help a struggling resident, or to provide care during an end-of-life situation.

The Pennsylvania Department of Public Health has also provided the following definitions:

  • “Compassionate care” refers to caregiver access necessitated to maintain or improve a resident’s health and well-being based on two or more documented “significant changes” in the resident’s care plan.
  • “Compassionate Caregiver” refers to a family member, friend, volunteer, or other individual identified by a resident, the resident’s family or facility staff to provide the resident with Compassionate Care.

Who Qualifies to Receive Compassionate Care?

When the pandemic started, CMS recognized that it was not feasible to expect that nursing home residents remain in isolation.  However, with so many unknowns, CMS knew that it had to restrict who could visit the vulnerable population.  In March 2020, at the beginning of the U.S. pandemic, CMS issued guidance restricting visitation to nursing homes except for what it termed “compassionate care situations.”  CMS gave “end-of-life” situations as an example of a compassionate care situation, but provided little guidance as to other situations.   Instead, decisions regarding what was to be deemed a compassionate care situation were to be decided on a case-by-case basis by facilities. 

In June 2020, CMS released a Frequently Asked Questions document which, among other things, expanded on previously issued guidance on when compassionate care visits were permitted.  While CMS recognized that a compassionate care situation “does not exclusively refer to end-of-life situations,” CMS did little to further define what constitutes an appropriate compassionate care situation and instead shifted the burden to facilities, state government, families and ombudsmen to determine which situations merited compassionate care visits. Without specific federal guidance, local governments and facilities were hesitant to aggressively expand compassionate care situations beyond end-of-life situations.

A breakthrough arrived in September 2020,  when CMS issued additional guidance providing detailed recommendations to nursing homes to safely facilitate visitation during the pandemic, including specific guidance regarding what residents qualify to receive compassionate care from a Compassionate Caregiver.  In addition to end-of-life situations, CMS listed the following examples of valid compassionate care situations:

  • When a resident who was living with their family before being admitted to a nursing home is struggling with the change in environment and lack of physical family support.
  • When a resident who is grieving after friend or family member recently passed away.
  • When a resident who needs help and encouragement with eating or drinking, previously provided by family, is experiencing weight loss or dehydration.
  • When a resident who used to talk to others is experiencing emotional distress, seldom speaking, and crying frequently (when he/she had rarely cried in the past).

In addition, CMS confirmed that Compassionate Caregivers are not limited to family members and can include any person who could meet the needs of the resident such a friend or a spiritual leader.  CMS has recommended that, through a person-centered approach, facilities should work with residents, families, caregivers, resident representatives, and the Ombudsman program to identify the need for compassionate care visits.

The Pennsylvania Department of Health has subsequently determined that a resident will qualify to receive compassionate caregiving from a Compassionate Caregiver if they are suffering from two or more documented significant changes in their condition.  A significant change is defined as a major decline in a resident’s status that:

  • will not normally resolve itself without intervention by staff or by implementing standard disease-related clinical interventions;
  • the decline is not considered “self-limiting …”;
  • impacts more than one area of the resident’s health status; and
  • requires interdisciplinary review and/or revision of the care plan.

Nursing home residents who qualify to receive compassionate caregiving shall have this need added to and incorporated into their care plan.

Protocols for Compassionate Caregivers

While clarity regarding who qualifies to receive compassionate care has been welcomed, the unfortunate fact remains that residents of nursing facilities continue to be at extreme risk from COVID-19 infection.  Accordingly, Compassionate Caregivers must take precautions before visiting their loved-one.  In Pennsylvania, once approved by a facility, Compassionate Caregivers are required to adhere to the following steps and recommended safety precautions:

  • Compassionate Caregivers must, at a minimum, show proof of a negative COVID-19 test that was administered within the prior 7 days, preferably 72 hours if testing turn-around times allow, before initiating Compassionate Caregiver duties. In addition, the Compassionate Caregiver is subject to all ongoing testing requirements that apply to facility staff and the Compassionate Caregiver is responsible for arranging and covering the cost of testing.


  • Compassionate Caregivers must be screened prior to entering the facility, adhere to universal masking requirements, sanitize their hands frequently, and maintain social distancing from staff and other residents. Social distancing from the resident receiving compassionate caregiving is strongly preferred but not required if distancing would not achieve the intended health outcomes of the visit.


  • Compassionate Caregivers should not visit more than two hours per day and there should not be more than two Compassionate Caregivers per resident at a time.


  • Compassionate Caregivers who do not comply with these requirements will be asked to leave the facility and their Compassionate Caregiver status will be reassessed by the facility and possibly revoked.


Monitoring your loved-one’s condition from afar can be very difficult, but if you believe that your loved one’s situation merits a Compassionate Caregiver, you should approach the facility regarding approval to fill this role.  For more information regarding compassionate care from the Pennsylvania Department of Health, I recommend reading Guidance on COVID-19 for Skilled Nursing Facilities in Pennsylvania distributed on September 3, 2020.


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Questions? Contact us at Julian Gray Associates

Julian Gray Associates
954 Greentree Road | Pittsburgh , PA 15220
Phone: 412-458-6000