Helping Informal Caregivers to Give Care

We ask informal caregivers to do things that 20 or 30 years ago, we would have hesitated to ask a nurse to do at home. They struggle with these issues such as “How do I assess the pain to determine are they really having pain?” “How much of the medication do I give?” “Which medication do I give?” “How do I know when to call the hospice nurse?” for example. Often the hospice nurse will come visit and, at the conclusion of the visit, say, “Great visit. Call me anytime; we’re on-call 24/7. If anything new comes up, if a symptom develops, if things get worse, give us a call.” The nurse flies out the door, and the family member, the informal caregiver, is sitting there, wondering what do they mean by ‘if something comes up’ or ‘what does worse look like?’ or ‘what does a new symptom look like?’ So they’re very confused about when to call. They’re hesitant to use opioids because they hear what’s going on, and they’re fearful of overdosing their loved one. But if they don’t give them enough medication and then the patient passes away, they’re left to worry “Did I give enough medication?” or “Did my mother suffer?” I’m very, very interested in what we can do as best practices to support these informal caregivers particularly in medication management, which is my area of interest. We have some interesting research going on, and I look forward to seeing how that all pans out. It is everybody’s job—the entire team—to teach the informal caregiver. Also, I’m very invested in teaching the whole multiprofessional team how to pull off all the skills that we have to bring to the table and caring for someone with a serious illness. The chaplain needs to know about true diagnosed anxiety because if a person is truly anxious, they really can’t talk about their eternal reward; they have to get their anxiety addressed. If someone is physically uncomfortable, they can’t talk about their advanced directives. Similarly, often when I go to adjust the medication regimen, by just asking a few simple questions, I can determine if the patient’s big issue really is a psychosocial or spiritual issue; it’s not really a physical complaint. It’s every practitioner on the team’s job to take care of the unit of care, which is both the patient- and the family-centric model. It’s the patient, the family who, of course, are the informal caregivers. It really does take a village to take care of a patient and a family wrestling with a serious illness.