I am sure that many of you have seen the article, “‘No One is Coming:’ Investigation Reveals Hospices Abandon Patients at Death’s Door,” published earlier today by TIME and written by journalists from Kaiser Health News. The article paints an unflattering picture of hospice by highlighting outlier examples of neglect and questioning the care hospice provides at critical times for patients and family caregivers.
First, let me be perfectly clear, poor care is not acceptable and NHPCO will not defend substandard hospice care. Hospices have a sacred obligation to serve patients throughout their end-of-life journey and are legally and morally required to serve their patients whenever and wherever needed. Those that are unable or unwilling to meet the standard of care that hospice represents should not be in business.
I do want to commend the overwhelming majority of hospice providers in the U.S. who not only meet but exceed the high standards of care for hospice patients. They understand and will agree that hospice organizations must be committed to providing the highest quality of care; they must strive to overcome challenges and difficulties they will inevitably face.
Over the past several months, I have traveled across the country and have been inspired by the level of excellence, dedication, and compassion I have seen from the wide range of hospice organizations that live up to the hospice philosophy of care. For the work that each one of you does, at bedsides every single day, let me offer my deep appreciation.
It is hard to read such negative examples of hospice care as those shared in the TIME article, but please allow me to offer some observations:
• Despite the mostly negative anecdotes shared, the writers of the article report that 89 percent of people were satisfied with hospice – this statistic is from a poll conducted by the Kaiser Family Foundation for this article.
• The authors cite 3,200 complaints filed with state officials in the past five years. During that period, hospices cared for an estimated 9.4 million patients. Certainly, no bad experience is acceptable, but we should not forget the millions of those who were served well – and the many millions of family caregivers who deeply appreciate the compassion and care they received.
• Again, there is no excuse for failure to uphold the high standards of hospice care, but while the article points to disturbing incidents in Alaska and “Appalachia” the authors miss an opportunity to talk about access to quality care issues that are a challenge for many patients and health care providers, especially those in rural communities, which are not unique to hospice.
• In the five-year period that the article spans, NHPCO has done much to lead efforts that have brought support and welcomed oversight to the field. One example is the IMPACT Act of 2015 that establishes hospice surveys every three years. The hospice community has championed appropriate oversight for many years – what other health care sector has done the same?
• Hospices are continually looking at care delivery and striving toward the goal of continual improvement. This is due, in part, to the federal regulation requiring Medicare-certified hospices to have established Quality Assessment Performance Improvement programs in place.
• NHPCO continues to advocate for policy to address rural, workforce and quality issues through new legislation.
• The stories chosen were selected by the authors to cast a shadow over the entire field and push a false conclusion that growth of hospice equates with a lowering of standards. This is not accurate. We know that the care described in the TIME article is not reflective of the work going on every day in this country.
We as a community face enough challenges from external forces and it is disheartening to think that some bad actors are bringing our excellence and dedication of our community into question. As providers caring for patients and families at one of life’s most challenging times, we must always work to go beyond basic standards of compliance and work to reach a level of performance within our organizations that is exemplary among healthcare providers.
NHPCO makes resources and education available to help deliver the highest-quality care. This is integral to our mission. I hope that every hospice provider striving for excellence will consider their active participation and membership with NHPCO as integral to their operations. Hospices not striving for excellence should not be caring for patients.
Similarly, we offer a wealth of resources on our website NHPCO’s CaringInfo.org to help the public understand what hospice is and what they should expect. And our website MomentsofLife.org offers videos, stories and information about all that hospice can do to help patients and families. Our worksheet, “Choosing a Quality Hospice for You or Your Loved One” (PDF) can be a valuable resource. Please feel free to share these resources in your community.
I hope that providers don’t overlook the hundreds of positive articles that are published across the country every day that demonstrate the many positive things hospice provides to the people and communities they serve.
Thank you for your commitment and passion on behalf of those we serve. I’m proud to be working on your behalf.
Edo Banach, JD
President and CEO