In addition to having serious discussions with their doctors and collecting input from social workers and other health-care providers, terminally ill patients in New Jersey can turn to a welcome new tool to rate hospice programs they're considering as they near the end of their lives.
The federal Centers for Medicare and Medicaid Services has begun offering an online hospice comparison service, which asks many of the questions that matter the most to the dying and their loved ones.
Does the facility ask you about your treatment preferences? About your beliefs and values? Does the staff check your pain level when you enter the program, and assess the problem in a timely manner if you have pain later on?
These are the types of issues consumers might not know to inquire about, which is why the new database is so valuable.
The interactive site provides full scores on 49 hospices in the state, and partial data for another seven. Three reported no data at all.
The snapshot provides a mixed bag of results when it comes to New Jersey, with 27 hospice programs ranking above the nation average, and six bagging perfect scores in all seven indicators.
The comparison service is particularly vital as state officials spend gear up to spend $5 million this year to craft a model for end-of-life care.
The initiative includes developing education and training protocols for health-care professionals, as well as assessing the impact of hospice placement on patients' experiences.
Hospice care generally involves a team approach to caring for patients at home or in a home-like setting, with physicians, nurses, aides, social workers and others working to make the last six months of a patient's life as comfortable and dignified as possible.
The New Jersey Home Care and Hospice Association serves nearly 40,000 terminally ill patients every year - people diagnosed with cancer, Alzheimer's disease, cardiac problems, ALS and stroke, among other conditions.
Last December, three major players - the Medical Society of New Jersey, the New Jersey Hospital Association and the New Jersey Association of Health Plans - joined to create a leadership academy. Top item on the agenda: improving end-of-life care.
The new website comparing hospice services will serve not only as a guide for potential patients, but also as a goad to prompt hospice administrators to examine how well they're doing their jobs.
With 13 of the hospices scoring less than 50 percent on at least one measure, there's clearly need for improvement, particularly at a time when research indicates that Americans are increasingly reluctant to spend their finals days in a hospital, hooked up to intrusive machinery and denied the basic comforts of home.