In recognition of Family Caregiving month, the Family Caregiver Alliance published a blog a day through November 2011, with guest bloggers writing about different aspects of family caregiving. November 16 featured the blog below (republished with permission).
By Carol Levine, Director of the Families and Health Care Project at the United Hospital Fund.
In a focus group, Maria, a young woman caring for her father, complained, “When you buy a pet, you get an instruction book that tells you how to feed it, water it, and clean it—everything you need to know. But when you take a sick person home from the hospital, you don’t get anything that tells you how to take care of him!”
Sound familiar? When I show the video containing Maria’s impassioned outburst, professional audiences laugh nervously, and family caregivers nod enthusiastically. Even though the focus group took place in 1997, everybody recognizes that flaws in transitions in care (we talked only about “discharge planning” back then) are still with us. In some ways the situation may be worse.
If Maria’s father were ill today, he would probably have a hospital stay of a few days and then be sent to a short-term nursing home rehab program. He might be sent back to the ER to treat an infection or breathing problem; Maria might or might not be notified of the transfer. If he was readmitted to the hospital from the ER, he would be discharged again to rehab, maybe to a different nursing home. If all went well (and it might not), he would be discharged home, possibly with home care for a few weeks, but maybe not. At each stage Maria’s chances of being involved in care planning, having her needs as a caregiver taken into account, understanding the complicated medication schedule—in short, being given the equivalent of the instruction book she wanted—would not be good.
It was caregivers like Maria, and like-minded health care professionals, who provided the impetus to what has become the United Hospital Fund’s Next Step in Care campaign. There are three main components:
The Next Step in Care website (www.nextstepincare.org), with its 22 free downloadable guides for family caregivers, to help them understand and navigate the complex health care system. These guides are available in English, Spanish, Chinese, and Russian. Other guides for health care providers help them work more effectively with family caregivers;
Outreach to community-based organizations to train staff to be able to use the Next Step in Care guides in their interactions with family caregivers; and
The Transitions in Care–Quality Improvement Collaborative, which brings together teams from hospitals, nursing home rehab programs, home care agencies, and hospices to work on processes that involve family caregivers in transition care planning and implementation.
All these efforts over the past 15 years have paid off—to some degree. There is strong physician, nurse, social worker, and other professional advocacy for involving family caregivers more effectively in transitions and some good models around the country. But when I participate in panel discussions about improving transitions and reducing hospital readmissions (the mantra of the day), I am usually the only person who specifically addresses the needs of family caregivers.
For now, if family caregivers want to ensure more effective transitions, they will have to be better informed and proactive themselves. This can be challenging—not only because problems arise most often in crisis situations, but also because the information they need can vary from one health care setting to another. That is why the Next Step in Care guides are organized around four main categories: guides for all caregivers, guides for a hospital stay and discharge planning options, rehabilitation services, and home care.
In the first category are guides, for example, on becoming a family caregiver; HIPAA and privacy regulations; Emergency Room visits and urgent care centers; and, two of the most popular on the website, a medication management guide and form. In the hospital stay category are guides that help a caregiver do a self-assessment of needs and worries; a guide to discharge planning options; and a discharge checklist. The rehab and home care sections include guides that introduce these services and tell the caregiver what their roles and responsibilities will probably be.
The guides will not answer every caregiver’s questions, but they will help the caregiver understand what questions to ask and when to push back when the answer is unclear or inaccurate. Family caregivers need to feel confident and secure in their right to ask questions and be given information. Next Step in Care can help build that confidence so that the Marias of today and the future can be full partners in care.