Just look out around you, people fighting their wars. They think they’ll be happy when they settle their scores. Let’s lay down our weapons that hold us apart. Be still for just a minute try to open your hearts. – “More Love” by Tim O’Brien
In the blog article from Health Affairs, “Let’s Not Muddle the Message About Home- And Community-Based Palliative Care,” (02/12/19), the author rightly diagnoses that there is confusion about home- and community-based palliative care and hospice. However, this blog post does nothing to clarify confusion or get more care to more people. Indeed, we must acknowledge that posts like this— and the turf and territoriality that underly them— is leading to this confusion and causing some of the access problems we bemoan.
Tension is understandable. The hospice philosophy of care has been in place since the mid-1960’s and has been a Medicare benefit in the U.S. since 1983. Formalized palliative care programs evolved more recently, yet in the past two decades we have all seen the immense value of palliative care, as the blog article clearly points out. Indeed the National Hospice Organization became the National Hospice and Palliative Care Organization almost 20 years ago. Hospital-based and community-based palliative care programs are helping people by making the services they need available, in the location where they most often prefer to be. We must not let our words or professional rhetoric get in the way of the care and support people need when facing serious and life-limiting illness.
A factor that complicates this debate is that the philosophy of care at the heart of both hospice and palliative care is the same: with person-centered care and a skilled interdisciplinary team at the core. Hospice is a form of palliative care, the specialized care that is most appropriate when people need the highest quality symptom control, pain management, psycho-social and spiritual support— as well as support for family caregivers. Palliative care, conversely, grew out of hospice. The terms, and the people providing the care, are linked.
A reality we must acknowledge is that within our current system, palliative care is not defined by a Medicare benefit. Hospice is a philosophy and approach to both living and dying. And many hospices are providing those services to meet the needs within their communities, at times doing so at a loss or with philanthropy to meet community need for these services. Regarding that point, one particularly unsettling statement in the blog post must be addressed directly, “We are also hearing troubling anecdotal reports that some hospice agencies are entering the palliative care business in part to readily transition patients into hospice, where reimbursement payments are typically higher.”
There is nothing troubling about this— at least not to the patients and families receiving these services. Transition programs are bringing person-centered care and support to families earlier in the course of their illness to meet gaps that unfortunately exist in our delivery system. It is not about providing a feeder program for hospice services but is about giving the patient and family caregivers the most appropriate services at the most appropriate time— both in instrumental and social support. The implication that providing palliative care or other transition services might be motivated by future hospice reimbursement is nonsense and trivializes our needs-based approach.
We need to create the continuum of care that extends from diagnosis throughout the patient’s journey. In fact, a priority of the National Hospice and Palliative Care Organization is to expand access to person-centered care provided by the skilled interdisciplinary team, partnering with families and communities. Sustainability is a significant factor and demonstrations of advanced payment models are critically important. And, terminology may indeed change. In fact, one of the most common remarks hospice professionals hear from families after the death of their loved one is, “Why didn’t we get palliative care and hospice services sooner?” Might different terminology help provide earlier access? That’s certainly possible.
As a provider community, we should be working to make community-based palliative care more widely available, and we should be then be encouraging transitions for eligible individuals when they are hospice appropriate. By setting up stark divides between palliative care and hospice care, we may be preventing people from getting the actual care they need, when they need it. Nearly 30 percent of Medicare beneficiaries have hospice care for less than seven days— far too short a period to benefit from the skills of the hospice interdisciplinary team. Most people never get palliative care pre-hospice. The two are not mutually exclusive. People need earlier access to hospice AND they need access to pre-hospice palliative care.
A challenge for many professionals is initiating frank conversations about care options long before a medical crisis. These conversations, which are often inevitable, must be part of our work to ensure people are the priority, always.
On the eve of Valentine’s Day, we must set aside academic or paternalistic debates in favor of more love, more care, earlier. Full stop. We must stop the insidious turf wars, lest we want our population to continue to decline, be confused, call 911, and receive acute and institutional care as they face and succumb to serious illness. We can do better, and we will.
President and CEO
National Hospice and Palliative Care Organization