Editor’s note: Jane Gross recently asked on the New York Times ‘The New Old Age’ blog if family caregivers were “mad as hell?” Kathleen Kelly, the executive director of Family Caregiver Alliance addresses this question in her post below.
December 23, 2011
By Kathleen Kelly
Currently there is only one program for adults – hospice services – that view the family and the patient as the “unit of care”. As such, they assess the needs and address the health, social and emotional care issues of entire family. Not without its flaws and gaps in service payment, hospice usually scores well on the family experience of care surveys. Hospice has operationalized “person and family-centered care” with systematic practice and quality measures.
However, there is usually a long period of managing chronic conditions or illness leading up to the use of hospice services for which there is no formal recognition of family involvement in care, no assessment of needs of the caregiver and no education or emotional support provided either directly or through referral to community services. This is true whether in a primary care setting, hospital, transitional care across acute and post-acute long term care and community services.
If 70-80% of long term support and assistance is being provided by informal caregivers, why does this persist?
We are in an odd period where the recognition of the role of the informal caregiver by health care professionals is generally high but there are no formalized mechanisms for including them as partners in care. These mechanisms would include a setting-appropriate assessment of the informal caregiver, actions taken as a result of that assessment, quality benchmarks for those processes and public reporting of the outcomes.
Right now, inclusion of the informal caregiver in a meaningful way and education provided on care tasks or community services to support an extended period of care is hit or miss. The majority of health care providers will acknowledge that the continued health of their patients with chronic care conditions will rely to some extent on the informal system of care provided by family and friends.
Many will say that the main reason their patient is not in a nursing home is the presence of a spouse, son, daughter or other family member.
We need to shift the paradigm of care from “person-centered” to “person and family-centered” systems of care. While every patient may not want the involvement of their family or friends in providing assistance, it is also true that words do matter. If we leave out the “family” in our terminology, we will continue down the road of no meaningful involvement of those who truly provide the long term assistance now and in the future. It is a big job to make this shift. But unless we do, families and friends will continue to be frustrated by a system that desperately depends on them while ignoring their basic needs.