In a terrible twist of fate, the very day that the Centers for Medicare & Medicaid Services (CMS) Hospice Compare website went live, I found myself in a pulmonologist’s office with my parents, taking in the news of my mother’s advanced cancer and malignant pleural effusion. The shock of it, and the uncanny timing are beyond comprehension. You see, I’ve been leading research at RTI International and funded by CMS to develop the Hospice Quality Reporting Program and Hospice Compare since 2010. And now I stand to benefit from my own work in a way that I didn’t imagine would happen this soon in my life — as a daughter and caregiver for my seriously ill mother.
My roles as a clinician, researcher, daughter, and caregiver have collided. I’m experiencing the awful whiplash of emotions all daughters in this situation likely experience. Do we hold on to some tiny sliver of (false?) hope that there will be some tolerable treatment that will take away the awful fact of the cancer and ease her symptoms? Do we try to ignore the facts we have so far, and hope that the next few tests will give us better news? Do we launch ourselves into finding a good hospice provider, on the assumption that my mother’s prognosis at this point makes her eligible for the Medicare hospice benefit?
Or am I getting a little bit ahead of myself; my mother’s prognosis is not yet clear, though I know the statistics are not at all in her favor. One question I’ll be sure to ask at her next oncology appointment is whether my mother’s condition and prognosis make her eligible for hospice. And if not, I’ll be asking about the availability of palliative care services that will benefit her if she decides to opt for treatment for her advanced cancer.
When she does become eligible for hospice, I’ll be using Hospice Compare as a starting place to compare hospice providers in her region.
A few years ago, I wouldn’t have had any way to compare hospice services and quality of care in a city far away from my own hometown. Word-of-mouth would have been by my best bet for finding a hospice provider who would provide the compassionate care my mother and our family will need as we make this journey toward my mother’s death.
Now there’s a new source of valid and reliable information about hospice care: a CMS website my team at RTI International helped create. Caregivers like me can now look up which hospices provide services in her area, and find some information about how well these hospices take care of patients and families. Do they manage symptoms of pain well? How about shortness of breath? For patients receiving opioids, do they manage the side-effects well? Do they talk to their patients about their preferences for treatment, and assess patients’ needs for support for spiritual or existential concerns?
Eventually, Hospice Compare will include more measures, and will also provide information from the Hospice Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey. That information will allow me to compare hospices on other important aspects of care including care coordination and communication.
For now, Hospice Compare can serve as a starting point for me to create a list of hospices I’d like to interview, so I can ask them questions about the services they provide, and the quality of some aspects of care they provide.
Hospice Compare isn’t perfect, and I’ll still reach out to trusted friends and colleagues with ties to health care providers in my mom’s city for recommendations or other insights. I’m fortunate that my many years of clinical and research experience in the field of end-of-life care provides me with professional connections and information that others don’t have access to. At the same time, this experience puts into sharp focus the work we still need to do to help support all consumers of health care services in making decisions about treatments, and where to receive them. At no time is this more important and fraught than when a family is encountering a serious or life-limiting illness.
The time for hospice for my mom is approaching, though we don’t yet know exactly when. I’m still struggling to understand that the work I’ve been doing for years to benefit other patients and caregivers now benefits me directly. I’m happy that when the time for hospice comes, I’ll have access to reliable and valid information that will help us select the best hospice care to support my mom, my dad, and me. And I will have this personal experience as another motivation to continue to dedicate my career to improving care for people with serious illness and those nearing end of life.
Franziska Rokoske is a health services researcher.
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