My worlds collided
When David was diagnosed with nasopharyngeal cancer, my personal and professional worlds collided. As a researcher I have tested may ways to improve the hospice caregiving experience. When I became caregiver I experienced the need for that help first had. This past summer I was privileged to share that experience at the National Academies of Science, Engineering, and Medicine workshop on serious illness care. The video is available at this link.
What does research tell us about caregivers
Other researchers, like myself, have described the challenges of caregiving. Caring for another stresses the body and mind of the caregiver. A third will be depressed and anxious. Caregivers develop more chronic and immune disorders. Friends and family tend to pull away as time goes on. Despite the help of friends and family, caregivers become isolated just when they need more help. While caregiving can be rewarding, it is also challenging.
What research does not know
We do not have much research on how to improve caregiving. Caregiver support groups can be helpful, including those online. Educational activities can help ease anxiety and improve patient care. Simple supportive phone calls have even made a difference. As a result, depression, anxiety, quality of life, and burden have all been improved with these tools. However, few health care providers have tried these things.
Assessment of caregivers by providers
Formal assessment of hospice and palliative care caregivers is rare. There is often “no place” to record work with family members in patient charts. Likewise, there is not a team member with the job of assessing and focusing on needs. Similarly, few professionals use assessment instruments to identify caregiver mental and physical health challenges. Assessment is the first step toward linking the science with the practice of the health care team.
A call for action
I am issuing a call to action for hospice and palliative care teams. I challenge professionals to assess caregivers and develop a plan based on the assessment. Caregivers should be a priority. Designate someone to focus on the caregiver. Every caregiver needs a formal and ongoing assessment of depression, anxiety, physical health, and burden. From these assessments plans of care can be made. Continued assessment can show if the plan is working. A healthy caregiver is a better caregiver. Patients will benefit.