AAHPM — Summer Quarterly 2012
Change Language:
Timothy E. Quill

Personal Reflections on the Meaning of Our Brand

Difficult conversations are never easy to initiate. As hospice and palliative care professionals, we know this all too well—but we also know that avoiding them is not constructive either. These conversations offer an important venue to share perspectives and learn from others. The AAHPM Board of Directors will be starting down that path in the coming months as we consider the implications of our name and related messaging for AAHPM.

Questions about the Academy’s full name have been surfacing every year since I joined the board in 2008. Would a name change reflect a rejection of some of the very roots of the organization, or could it be an important step in our emergence as a field? Because the board is considering whether to seriously entertain such a change, I thought it would be worthwhile to provide some personal reflections on this topic.

The Power of Words
AAHPM’s overarching mission—to ensure that all seriously ill individuals have access to high-quality, evidence-based hospice and palliative care—remains the same. The question before us is whether a name change would help achieve this end. Palliative care suffers from low name recognition. However, when people learn what it has to offer, they are positively inclined to use it for themselves and their loved ones. Conversely, hospice has relatively high name recognition and a generally positive image, but because it is a program for patients at the “end of life,” many patients who might benefit from hospice reject it, and the length of stay for many of those who do accept it is relatively short. This presents quite a conundrum as we decide what to call the Academy and our individual programs.

Many of us who work primarily in hospitals title our own programs using palliative care rather than hospice language because of this issue. In the tertiary medical center, fighting disease and death using medical technology is central to the culture, and palliative care consultants who push patients toward accepting a hospice approach often find themselves with the self-fulfilling prophecy of mainly seeing patients who are actively dying. In these settings, the word hospice tends to elicit fears about “giving up” and dying that are already close to the surface but may be too raw to address directly. Keeping the nonpalliative care attending physicians in charge of if and when to discuss—much less transition to—hospice has steadily allowed us to see patients earlier and earlier and to expand the range of patients we see. Paradoxically, the number of patients our organization refers to hospice has increased significantly because we are consulting on a much larger number of patients with this approach. Because we now have the trust of the nonpalliative care attending physicians, we can more boldly suggest opening up a conversation about hospice with the patient and family using the established chain of command in appropriate circumstances.

Clinicians who primarily work in community settings are acutely aware of the resources and support that can be offered to patients who are formally enrolled in hospice programs and their families. There are some unique programs that try to extend “hospice-like” home care benefits to patients who still want to continue some or all aggressive treatments; many of these patients eventually transition to formal hospice programs as their conditions deteriorate and their needs increase. In the Rochester, NY, community, one such home palliative care program is called “Supportive Care” and the other is called “Palliative Care,” but they clearly link home palliative care services to each organization’s formal hospice programs. In the community setting, the link between palliative care and hospice is more explicit than it is in the hospital.

Communicating with the Public
In terms of the national political environment, palliative care has made an effort to distance itself from death and end-of-life care in literature and presentation. Palliative care includes pain and symptom management, added support for patients and families, and assistance with difficult decision making, but many programs have systematically removed language about “end-of-life” care and “peaceful dying” from their literature. Although a significant number of inpatients seen by palliative care consultants die during their index hospitalization, the same can be said about cancer and heart failure programs— yet no one required that they explicitly acknowledge that same reality. In addition, the majority of patients seen by palliative care specialists do not die and they clearly benefit from the specialists’ knowledge, skill, and support. In the acute hospital setting, most patients are much more interested in survival than end-of-life care, and if the latter is on our shingle, we may not even get in the door.

Hospice embraces helping patients “live as well as they can for as long as they can,” but most programs are not afraid to use the “D” word in their materials. Although most patients who are admitted to hospice and their families rate the experience extremely positively, the transition for many can be psychologically difficult at first. Those who are admitted to hospice programs are generally very satisfied with the services and care that are provided. Hospice is one of the most comprehensive, high-quality home care programs in the country. However, in 2010 only 42% of patients who died in this country were enrolled, the median length of stay was 19 days, and 35% of patients lived 1 week or less after referral. Our culture tends to be ambivalent about explicit considerations of death, which was reflected in the “death panel” debacle when Congress considered compensating physicians for assisting patients and families with advance care planning. Despite all this, hospice has been enormously successful with high favor-ability ratings.

Implications of a Name Change
What does all of this mean in terms of what we call our individual programs and AAHPM? Each of our local programs will need to make a strategic decision on the short- and long-term tradeoffs of using end-of-life or hospice language in their names, mission statements, and advertising materials. The markers of success, for whichever strategy we choose, will be (a) better palliation for all seriously ill patients and their families, (b) increased referrals to palliative care earlier in the disease trajectory, (c) increased hospice referrals, and (d) better care and support for more patients at the end of life.

Many audiences have an interest in the outcome of this conversation. Most of us will first consider how name changes at different levels would affect our own programs and the Academy in the short and long run. Although these considerations are important, for me the more critical question in the long run is how will we ensure that a larger percentage of seriously ill patients is able to access the services our field provides? There are many important audiences: our patients and their families, our colleagues and organizations, and our policymakers and healthcare reformers. The stakes are high for us to think this through carefully before deciding whether to move forward.

After careful consideration, the AAHPM Board of Directors empowered a task force to explore whether we should explicitly consider changing our branding (see sidebar). The task force will collect data and deliberate over the next several months and then present its findings to the board. The board will have the final responsibility to decide whether this process moves forward or stops here. I hope and expect that this will be a time of reflection and thoughtful discussion within the Academy as we determine whether a name change would aid our strategic plan by expanding our reach in the care of seriously ill patients and their families.