Hot off the press: Three new studies confirm the importance and value of hospice in caring for persons living with dementia and their care partners, and areas for continued focus!
The first study by Dr. Krista Harrison and colleagues found that care partners of people living with dementia enrolled in hospice had much better views of care at the end of life, less anxiety, and fewer care transitions compared to care partners of those not enrolled.
The second study by Dr. Melissa Aldridge and colleagues found that the rates of use of hospice amongst persons living with dementia increased substantially between 2004 and 2016, and almost 50% of all hospice patients had a primary or secondary diagnosis of dementia. Clearly hospices have had to rapidly pivot from primarily serving people with metastatic cancer; that’s why we created Aliviado Dementia Care Hospice Edition!
Interestingly, this study also found that persons living with dementia were more likely to be disenrolled from hospice at six months. This was likely due to hospices improving the quality of life for people living with dementia and having them reach a level of health and stability incompatible with hospice eligibility requirements. We still have much work to do in prognosticating likelihood of death in this seriously ill population. We also need to consider other models for serious illness care in persons living with dementia as disenrollment from hospice can cause significant distress for the person living with dementia, care partner, and hospice clinicians.
Finally, a third study by Dr. Pei-Jung Lin shows that hospice providers must work on improving health equity for seriously ill persons living with dementia and their care partners. Lin’s study found that Black and African American persons living with dementia were significantly less likely to use hospice and had lower completion of advance directives. They also found that Black/African American and Hispanic/Latinx individuals who did enroll in hospice were more likely to disenroll and have an emergency department visit or hospitalization.
We know from the Center to Advance Palliative Care that Black and African American individuals are subject to worse serious illness communication and express well-founded mistrust of healthcare systems. Those of us dedicated to improving access to hospice care must work to:
- Create trust with minoritized patients through developing and nurturing long-standing relationships with community leaders and organizations
- Develop more seamless transitions into hospice, for instance by using this transition checklist and working more tightly with referral organizations on setting expectations
- Develop better communication pathways while in hospice to prevent disenrollment and transfers to the ED during crisis.
These three action items have the benefit of also improving outcomes and potentially increasing referrals and Medicare Star Ratings. If implemented right, it is a win for patients, care partners, clinicians and the hospice!
Another thing that these articles highlight is that very few researchers and hospices are partnering to test ways to improve care in the rapidly changing hospice environment. That’s what sets your work with Aliviado apart from other hospices
We look forward a continued partnership with you and your hospices for Aliviado Dementia Care and future projects, to address the care needs of persons living with dementia and their care partners. Thank you for letting us be a part of your community!