Soon hospice will join the list of healthcare providers with publically reported scores from the Hospice Experience of Care Survey (HECS). HECS is the latest in the series of Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys to be implemented (Centers for Medicare and Medicaid Services, 2015). Currently, hospice results are available from survey vendors and the exact plans for public reporting are pending. This is the optimum time to start improvement efforts. Agencies hesitating to act on early results run the risk of losing valuable time to respond.
The CAHPS series of surveys are the standard for consumer feedback in healthcare. It is important to know the surveys are not about satisfaction. They are about the experience of care. The difference between satisfaction and experience is hard to quantify. Satisfaction is often due to achieving a goal without complications. An experience is more. An experience can be good or bad. An experience is memorable. It is a story to be retold. An experience may change who we are or how we understand the world. Healthcare can be satisfying. A planned annual visit to your general provider can be straightforward, on time, and generally fulfill your expectations in a satisfying way without being an experience. The same cannot be said for hospice. Dying is always an experience.
The experience of dying is an idea hospice practitioners discuss regularly. Creating, supporting, and achieving a positive dying experience are common organization goals. The HECS offers a new tool to understand the impact of these efforts. The tool seeks feedback on how common symptoms of dying (pain, dyspnea, constipation, anxiety/depression, and cognitive changes) were managed and understood by the person answering the survey. It seeks to measure how well the interdisciplinary team communicated and shared respect, concern, and caring. Similar questions are used in many of the CAHPS surveys to understand the experience of being a patient. However, only in hospice is the reported experience not actually from the patient. The voice heard in the survey is from the person who cared for them.
This voice is different than other CAHPS responses. It is the only voice that can speak after hospice care. It is a critical voice. At some point in the trajectory of every life, death becomes the clear and inescapable direction. At some point, those surrounding the dying, particularly the professionals, need to shift attention to those who will survive the death. Care of the dying person is critical, but care of the dying must include care of the living. Hospice professionals cannot stop at managing symptoms or caring for the patient. Time, effort, and attention must encompass those around the patient, as death grows nearer. The HECS formalizes this need by capturing and sharing their voice.
This may be the first time the family speaks directly to providers about the experience of witnessing healthcare. The knowledge gained from HECS gives hospice teams new opportunities to improve both what they do and how they do it. Many of the questions are about how the respondent understood what was happening. HECS pushes all members of the interdisciplinary group to explain, teach, and share what they are doing with the caregivers. It is this communication that shapes and informs the experience of dying for those who will survive.
HECS focuses on the perception of how hospice care was delivered. Hospice teams will need to manage this feedback differently than other quality data and challenge each other to develop communication skills with in the entire team. Agencies who invest the time now in understanding the HECS results and make plans to meet these opportunities can see the impact of their efforts before results are publically available and comparable.
"Invisible Work" Toll Among Family and Unpaid Caregivers
Family and other unpaid caregivers perform many activities on a regular basis as they help an older adult. These include making appointments, ordering and keeping track of medicines, assisting with personal care, shopping, doing housework, and providing transportation. Such caregivers play a crucial role in helping manage disabled adults, but are often invisible in the health care system. A team led by Dr. Jennifer L. Wolff at the Johns Hopkins Bloomberg School of Public Health set out to examine the nature and intensity of involvement that caregivers provide, and to assess how it relates to their health and function. The researchers analyzed data from more than 1,700 family and unpaid caregivers of almost 1,200 older adults with disabilities. The data were obtained from two 2011 national surveys of older people and the caregivers who assisted those with disabilities. The research was funded in part by NIH's National Institute on Aging (NIA) and National Institute of Mental Health (NIMH). Based on the findings of this representative sampling, the researchers estimated that 14.7 million caregivers assisted 7.7 million older adults in 2011. Of these, 6.5 million (44%) provided substantial help, 4.4 million provided some help, and 3.8 million provided no help coordinating health care or managing medications. Almost half of the caregivers who provided substantial help assisted an older adult with dementia. Those who provided substantial health care assistance, compared to those who provided none, were more likely to report caregiving-related emotional difficulty (34% vs. 15%), physical difficulty (22% vs. 6%), and financial difficulty (23% vs. 7%). Compared with caregivers providing no help, those providing substantial help were more than 5 times as likely to report that their care duties interfered with valued activities, such as visiting friends and attending religious services. Caregivers who provided substantial health care assistance were also more than 3 times as likely to lose work productivity. This was due to both hours of work missed because of caregiving and decreased work due to distraction and/or fatigue. The researchers found that the use of supportive services, such as respite care and support groups, was low. It was greater among caregivers providing substantial help, compared to some or no help (27%, 16%, and 8%, respectively).
REFERENCE