Abstract
Since 1999, I have been involved in supporting the hospice and palliative care movement in Africa, motivated in large part by the massive burden of the HIV/AIDS pandemic that was then killing over 6000 Africans daily. 1 It was also leaving in its wake millions of AIDS orphans. 2 I first went to Africa thinking that our American expertise could assist our hospice colleagues there with these challenges. Significant work together ensued over the last 11 years, during which time I witnessed first-hand the evolution of hospice and palliative care in Africa. I now feel strongly that Africa, in fact, has much to teach us here in the United States. Here are a few of the most significant.
No Prognosis Requirement
Palliative care starts at the point of diagnosis, and is integral to the continuum of care. This generally follows the World Health Organization definition of palliative care. 3 Africans cannot understand why a prognosis requirement is attached to hospice eligibility in the United States. 4 In Africa, the words “hospice” and “palliative care” refer to the exact same type of care – holistic, quality care for those with life-threatening illnesses. There is no distinction between hospice and palliative care prompted by administrative models or sources of payment. The words are usually used interchangeably. It seems so restrictive to limit the type of care that people need to only their last few days and weeks of life. Palliative care instead is viewed a part of the continuum of care, a vital necessity for quality of life - concurrent with treatment, in the case of lack of availability of treatment, or in the case of treatment failure. In fact, palliative care plays a particular role in outreach by helping to identify and prepare people for treatment. When end of life care is indicated, there is a seamless continuation of palliative care. Throughout, and into bereavement, the family is the unit of care. With its emphasis on quality of life, palliative care also plays a crucial role in treatment adherence. 5 This, of course, is a vital contributor to HIV/AIDS treatment success.
When we say that the prognosis requirement exists to qualify for Medicare payment, again there is pushback. Prognosis is difficult and unreliable at best, so why not just individualize the need for hospice/palliative care? African programs are increasingly able to access reimbursement through participation in government sponsored programs and through private medical aid plans available through employers.
The biggest argument against the prognosis requirement, however, arises from the point of view of access to care. Given the overwhelming HIV/AIDS pandemic numbers (with cancer becoming perhaps even more deadly), 6 how can care be denied to so many based on such a restrictive and ill-defined criteria as prognosis? Such a requirement appears to be a clear barrier to medically necessary care and treatment, as well an avoidance of our duty to provide care throughout the lifespan of the infected patient.
Not more hospices, but more hospice care
The extremely high scope of need and the severe limitation on resources mitigate against having hospices in every city and every rural area throughout Africa. Instead, the goal is to get hospice and palliative care integrated into the public and private health systems. So starting new hospices is not necessarily the goal, so much as grafting quality palliative care onto existing home-based care teams, clinics, hospitals, and academic institutions where professionals are trained. This means a serious effort at training at all levels, figuring out how to provide effective, ongoing mentorship and clinical supervision, and addressing the national supply chain for essential palliative medicines.
Hospice in Africa does not seem to have the elitism and separatism that characterized many of our programs in the early hospice movement in the United States. Instead, there is a great sense of collaboration and partnership with all components of the existing health system, as fragile and tenuous as some of them are. This posture of bringing added value as a mutually respected partner is one of the strongest impressions I have of the African hospice movement and how hospices relate to their communities. It is a reflection, I believe, of the African culture of inclusion. It also stands in stark contrast to the competitive dynamics we oftentimes see in the United States between hospice programs, between different components of the health care system (e.g., home health and hospice), and between hospice and palliative care. In the African vision of scaling-up hospice and palliative care, existing hospices strive to be centers of excellence, extending their training and mentorship throughout the community and particularly with the other components of the health system.
Cultural respect and sensitivity – more than a concept
One United States national hospice leader who had conducted many training workshops on cultural diversity recently went on an African hospice tour, much like our first trip in 1999. I met her the day she returned, and her first words were “I thought I knew what cultural diversity was all about, but I now realize I knew nothing.” Health disparities in our county, and within our hospices, will not be addressed until we truly learn about and experience cultural respect and sensitivity. 7 Cultural values are at play everywhere throughout Africa, particularly in the extended family unit and ancestral village or tribal roots of every individual. Hospice workers in Africa live and breathe deep respect and sensitivity for cultural differences. Such differences are not only honored, but celebrated and cherished. They impact how care is delivered and received. In the United States today, I do not typically see the wholehearted and deeply felt respect and understanding for the diverse cultural norms of patients and families that is so vibrantly seen in Africa.
Global connectedness through meaningful relationships
Part of the cultural respect so evident in Africa is the trust that is built based on personal interaction and communication. While e-mails and faxes are useful, there is no comparison to the joy and festive embrace when there are personal encounters. The bond made in working together in hospice is unconditional. Person-to-person relationships are warmly nurtured and continued through the years. Do African hospices need financial support? Of course, and desperately so. Yet, when they speak of their American partners, they always speak first of the cherished long term relationships. There is a strong sense in Africa of hospice and palliative care being uniquely African, but there is also a genuine awareness and high value placed on being part of the global hospice movement. It seems counterintuitive at first: that in an area of such enormous need, demanding such intense local focus and effort, hospice workers are so attuned to their global connectedness. Yet, in the African context, it makes sense: the whole is greater than the individual.
My assessment is that there are significant lessons that we in the United States can and should take from the African hospice and palliative care movement. The teachings just reviewed can help inform how hospice and palliative care can be better integrated in ways that enhance quality, increase access, and do so in times that are increasingly resource constrained. They bring a heightened awareness that hospice and palliative care can and should be mainstreamed into our public health system as an essential component of the continuum of care available to all patient populations. This general access to palliative care may in fact be more important in the long term than any allegiance to a formal hospice structure or eligibility criteria.
These teachings can and should impact program development at the local community level, and they can also inform our ongoing public policy engagement with statewide and national leaders. As a minimum, the African focus on getting quality care to as many as possible in the most culturally appropriate and cost effective method sounds like a good formula for today's health reform landscape in the United States. Such a focus may also speak to the divide that has arisen in our country between hospice and palliative care, as if the two need to be distinctly different and competitive. More importantly, it might stimulate serious re-consideration of hospice eligibility criteria in the context of good public health care. Several years ago, Jim Collins of “Good to Great” fame, told the NHPCO President that it might be a good idea if Medicare reimbursement went away, meaning that some of these core issues would have to be resolved for survival – much like they are being resolved in Africa today.
It is my sincere hope that based on teachings such as these, we can fully grasp the value of our interconnectedness with the global movement for hospice and palliative care. Rather than withdrawing based on our perceived in-country stresses at any point in time, we have the opportunity to work in collaborative relationships with like-minded entities on other continents to give and receive support. We are indeed interconnected, one human family living in a multi-faceted global village, with lessons waiting to be learned from our common experiences.
Footnotes
Acknowledgments
The author is an independent consultant with American and African hospice and palliative care programs and formerly the Executive Director, The Community Hospice, Rensselaer, New York and formerly the Executive Director and Senior Technical Advisor, The Foundation For Hospices in Sub-Saharan Africa, NHPCO, Alexandria, Virginia.