Is It Time To “Dust Off” the CARE Recommendations Toolkit?

I admitted an older woman to a facility last summer on hospice for terminal cancer, who at that time had minimal pain, controlled with Tylenol.  I was surprised when she said she would like medical aid in dying using the End of Life Option Act.  I alerted the facility and reviewed their policy and procedure from 2017, which permitted this option but certainly didn’t facilitate it.  Since my role was vacation coverage, I subsequently asked her attending physician about his impression of what it was like to die in this facility.  He affirmed my impression of other facilities which rely on hospice to provide care that focuses on medication management of pain and suffering, rather than a comprehensive person-centered approach before and after death.  

I was part of a task force convened by the CCCC (Coalition For Compassionate Care of California) that produced the CARE Recommendations (Care and Respect at the End of Life) in 2010, which were revised in 2015 ( ).  This tool kit starts with “What is a Good Death?”  This is a foundational question that should be the basis of subsequent individualized palliative care interventions.  From there, facilities are guided through the details of Advance Care Planning, Resident Directed Care Considerations towards the end of life, and then supporting the Bio-Psychosocial-Spiritual domains of residents, families, and staff as residents approach the end of life.  

The family’s role in end-of-life care has been more challenging during this pandemic, with in-person visitation limited and virtual visits possible with enhanced staff support, but limited by staff shortages and the need to focus on infection prevention.  In-person visits by hospice personnel have similarly been very limited during this pandemic.  Team care has been challenging.  

In Sonoma County our unvaccinated community is commonly experiencing serious illness from the Delta variant, but our highly vaccinated staff and senior congregate living community is following public health infection prevention guidance and thankfully has not experienced much serious illness.  Since most members of this community became fully vaccinated in February, we have only had 3 deaths due to COVID, compared to 163 deaths before that time.  In our County as of early September, we have had 50 deaths outside SNFs and ALFs since April, which is consistent with the national data showing that vaccines have been an almost miraculous intervention for reducing the risk of serious illness and death.

Though the pandemic isn’t over, these successes and further modification of the vaccine recommendations may allow you to revisit your plans for providing a “good death” for each resident.  This planning should include your hospice partners and community chaplains.  I believe the CARE Recommendations toolkit can be a valuable part of this process.  When this is done well, your residents, families, staff, and outer community will notice and affirm the value of this work.  This was the experience of my family during the end-of-life care my mother and father-in-law received about a decade ago.  

Providing compassionate, person-centered end-of-life care is among the most important gifts we can give the residents we serve, their families, and our staff.  Is it time for review and action?

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Comments on "Is It Time To “Dust Off” the CARE Recommendations Toolkit?"

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David Greene - Sunday, October 03, 2021

I agree, I think we give too little time and effort in determining what makes "a good death" or perhaps "best possible death" in our patients.

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