What really goes on in the home after discharge from the hospital can make all the difference in recovery, return to baseline function, or in some cases, successful adaptation to a new normal, a generalization that most nurses would agree on and, as it turns out, have limited understanding of or involvement in. Yes, the data are in, and we have been remiss.
Take the Binford family, for example. Mr Binford, a plumber, arrives at the hospital to bring his wife home after breast surgery. She is fatigued from surgery and drowsy with pain medications, and he is pressured to get back to the job site. In this context, a nurse explained the care regime for the dressing and the drain, the medication schedule, problems warranting a call to the physician, and the follow-up appointment schedule. Mrs Binford, part-time grade-school secretary, has arranged for 6 weeks off work. They hustle home where the patient’s 70-year-old widowed mother is planning to spend a couple of weeks caring for her and the couple’s teenage children. The nurse checked the box on the discharge form that the patient has caregiver support in the home and post-op care instructions were given. What could possibly go wrong?
In the US today, there are more than 32 million unpaid family caregivers providing complex care to a family member in the home. In 2012, American Association of Retired Persons (AARP) released the results of Home Alone: Family Caregivers Providing Complex Chronic Care (http://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/home-alone-family-caregivers-providing-complex-chronic-care-rev-AARP-ppi-health.pdf). The study, conducted by the AARP Public Policy Institute and the United Hospital Fund, was a nationally representative population-based online survey of 1677 family caregivers to determine the medical/nursing tasks they performed. Study findings challenged the notion of family caregiving as limited to personal care, such as bathing and dressing, and assistance with household chores, shopping, and paying bills. The complexity of healthcare treatment has greatly expanded the demands on family members. Support for routine activities of daily living, although time consuming for family members, require no additional skill beyond what most adults use to manage their own lives. The average person with no additional training is poorly prepared to manage multiple medications, mobility devices, special diets, wound care, various monitors, oxygen, and other specialized medical equipment for physically or cognitively impaired members. Yet, it is routine to expect families to manage this complexity in the home with little more than what we commonly refer to in the hospital as discharge instructions.
Returning to the Binford family, once home, the patient complained of increasing pain and discomfort. No one was sure when the last pain medication was given, so they held off. With news outlets constantly reporting on the dangers of overdose, they were afraid of giving too much pain medication. What the discharging nurse thought was that simple medication instruction is confusing in the home because caregivers lack the knowledge on which to base a care decision.
The AARP findings demonstrated that almost half of caregivers (46%) performed medical and/or nursing care tasks for family members with multiple chronic physical and cognitive conditions. Caregivers (78%) were managing medications including administering intravenous fluids and injections. Wound care management was reported to be very challenging for caregivers, and many (38%) expressed a need for more training. Why would we expect a plumber, a secretary, and a retired homemaker to understand how to manage a surgical wound with a drain? Nursing students learning wound care are required to practice in a laboratory setting and/or be supervised by an instructor before they attempt independent care.
We know the profile of typical family caregivers. They are an adult raising their own children and working a demanding job or, too often, more than 1 job. They are aging spouses, siblings, friends, and parents who may very well be managing their own chronic health problems. After a week of caring for her daughter, Mrs Binford’s mother had difficulty managing her blood sugar and was admitted to the emergency department after the grandchildren came home from school and found her drowsy and somewhat confused. Mr Binford decided to use the rest of his paid time off to stay home with his wife, disappointing everyone by canceling the planned family camping vacation.
This example highlights the difficulties in a short-term caregiver situation. Consider the families that are caregiving for long-term, complex, chronic illnesses and recalcitrant problems. Think of the diseases with both physical and cognitive features having a slow decline trajectory. Imagine the needs of these family caregivers over months and years. What are nurses doing? Focus groups conducted by AARP in preparation for the Home Alone survey indicated that nurses have pretty much failed to recognize the issue of preparing families as caregivers.
Moving from research to policy, the Caregiver Advise, Record, Enable Act rapidly translated the research into state policies across the country with 39 states and territories enacting it so far. For more information about individual state level actions, see the AARP report at http://www.aarp.org/content/dam/aarp/ppi/2017/08/from-home-alone-to-the-care-act.pdf and check the AARP Web site for updates (www.aarp.org).
What does all this mean for clinical nurse specialists? We, the nursing profession, have a social mandate to meet the public need for nursing services. We exist as a profession to do for the public what it cannot do for itself. We are expected, as an autonomous, self-regulating profession, to identify the public need and take action. Now, the public need has been identified for us. We are now required to take action. Clinical nurse specialists practice in 3 domains—patient/client-direct care, nursing/nursing practice, and system/organization level. Our competencies include specialty-focused expert clinical care; advancing the practice of nursing through teaching, coaching, and mentoring other nurses in addressing actual and emerging needs of specialty populations; and making system-level changes by designing new programs and removing barriers to nursing practice in the hospital setting. We are now being called on to extend our reach beyond a traditional hospital setting and design and deliver programs for supporting family caregivers with ever-increasing care complexity. We have a mandate to lead in this effort.
Read the reports noted in this editorial. They contain important background information and ideas for moving forward. Find out what is going on legislatively in your state. Be informed, be in the conversation, and take action. Call for action at the national level by forming work groups and other initiatives in the National Association of Clinical Nurse Specialists to provide leadership in spearheading this work. Lead an initiative at your organization to develop a caregiver program. If not clinical nurse specialists, who? We are highly prepared to practice in the 3 domains that must come together to address the issues of family caregivers.
For examples of what caregivers need and how nurses can help, start by reviewing the American Journal of Nursing’s series of articles with videos designed for caregivers, available at http://journals.lww.com/ajnonline/pages/collectiondetails.aspx?TopicalCollectionId=38. Look for additional materials provided by AARP at http://www.aarp.org/ppi/info-2017/home-alone-alliance.html.
November is family caregiver recognition month. Take time to say thanks to the many family caregivers among us. But they need more than recognition. They need our expertise to ease their work burden and improve the quality of life for their family member and themselves. The time is now! We must act.