Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

In this issue, we invited one of our editorial board members, Dr. Eduardo Bruera, to comment on the development of palliative care services worldwide. Please click on his name to access his biosketch.

The Growth of Palliative Care Worldwide Presents
Ongoing Challenges

by Eduardo Bruera, MD

[Citation: Bruera, E. The Growth of Palliative Care Worldwide Presents
Ongoing Challenges. Innovations in End-of-Life Care, 1999;1(5), www.edc.org/lastacts]

The modern palliative care movement started during the 1960s in the United Kingdom when a number of hospices were established. This original British movement soon became an international effort. Physicians, nurses and other disciplines responded to the unmet needs of terminally ill patients and their families by developing alternative settings and modalities of care to those provided by conventional health care. The settings usually consisted of houses in different neighborhoods away from the main campuses of teaching hospitals. The modalities of care emphasized attention to detail and non-intervention. The American hospice movement, which developed in the 1980s, was organized mostly around home care nursing programs with minimal intervention by other health care practitioners, including physicians.

Soon after the establishment of hospices, some spectacular results were reported. Patients achieved excellent symptom control with relatively simple interventions. Both patients and families were able to receive psychosocial support effectively from comparatively untrained health care professionals and volunteers. Because of the uncomplicated settings and modalities of care, the cost of care was relatively low.

The initial attempts to deliver comprehensive palliative care were of great importance in validating the needs of palliative care patients and their families and in promoting innovation in delivery of care. However, in the late 1980s and 1990s, it became clear that such a movement had serious limitations.

In most regions of the world only a minority of patients, primarily those with cancer, had access to palliative care and those systems. Patients were mostly elderly, financially stable, with good social support, and needing relatively low levels of care. Yet, even these select patients only accessed palliative care during the last month of life. Patients from minority segments of the population, as well as those who were young, suffering from severe psychosocial or physical distress, and with limited financial resources and family support, had limited or no access to palliative care. Even when other populations began to be treated in palliative care settings in the late 1980s and 1990s, the clinical results initially reported during the 1970s regarding number of home deaths and overall symptom control were not reproduced.

During the last five years, mainstream academic health care and health care systems around the world have finally recognized palliative care to be a priority. There have been many more palliative care programs established during the last 5 years than during the previous 27 years. In addition, the opportunity exists to fully integrate palliative care within the context of health care systems and academic institutions. This will secure research and education resources needed to improve the care of the terminally ill.

The enormous growth of palliative care around the world presents all of us with a number of fundamental challenges:

• Increased access for patient groups that are currently underserved by palliative care services
• Seamless integration of palliative care within the continuum of health care services available to patients with cancer and other illnesses
• The development of reasonable clinical outcomes based on solid evidence

In order to achieve these goals, both palliative care programs as well as major health care centers and academic institutions need to modify both their structure and function. The geographical and philosophical boundaries must be progressively eliminated so that palliative care can be delivered in acute care facilities, outpatient centers, tertiary palliative care units, hospices, and at home. A number of preliminary initiatives around the world show that palliative care can be delivered in all these settings in a complementary rather than in a competitive way.

The transition from "life-prolonging" to "palliative" care should not take place in an abrupt manner, but should be fully incorporated into the care plan of patients who, at the moment of initial diagnosis, have limited chances of cure. This will require traditional medical specialists to adopt palliative interventions and traditional palliative/hospice groups to adopt techniques that are now considered "life-prolonging". The process of integrating palliative care into the trajectory of illness of patients with cancer and other chronic incurable diseases will be greatly assisted by a solid body of evidence. Academic centers and palliative care groups will need to develop research and educational palliative care programs with a mandate of increasing our current body of knowledge.

Finally, palliative care programs around the world will need to be fully integrated within the regional, social and economic realities. In societies where patterns of communication and care emphasize beneficence and a more passive decision making and communication style between health care professionals and their families, issues regarding truthtelling about the diagnosis of cancer, the discussion around the terminal period of the illness, and decision making will need to be different than in areas such as North America, where emphasis is placed on autonomy and active participation of patients and families in decision making. Funding and administrative arrangements also will need to be tailored to the structure of each health care system.

The most successful programs will be those that are capable of maintaining the focus on the individual assessment and management needs of patients and families and are able to reach and effectively relieve physical and psychosocial suffering for the great majority of patients who die with cancer and other chronic devastating illnesses in their communities each year.

In this issue, Innovations spotlights two examples of efforts to implement palliative care across health care treatment settings from acute care to home. Dr. Carlos Centeno of Salamanca describes the recent evolution of palliative care services in Spain, where a regional approach spearheaded by several local champions has led to an impressive growth in the availability of palliative care in several regions of the country, notably Catalonia, and in major cities. In describing how several regions have mobilized to meet the challenge of making palliative care more broadly available to patients, Dr. Centeno details a range of influences, from outside as well as inside Spain. The second Featured Innovation is grounded in one particular health system, Northwestern Memorial Hospital in Chicago, Illinois. Dr. Charles von Gunten describes a local but multi-faceted palliative care and home hospice program that has evolved over the past 20 years and that he directed there until this past August.

In this instance, Innovations has interviewed not the initial innovators, but people who have been central to sustaining innovative practice that was already in motion when they joined these respective efforts. Not surprisingly, these "second wave" innovators have chosen to focus less on the nitty gritty details of the process of starting up an innovative practice, but more on the challenges of keeping the programs going. In spite of the entirely distinct health care delivery and care reimbursement systems in place in Spain and the United States, these two innovators share some common concerns. Both stress the importance of providing palliative care wherever the patient is and call for creating services for patients in long-term care who are underserved by palliative care services currently in both countries. Interestingly, Dr. Centeno in his discussion of the development of palliative care services across several regions of Spain and in the context of a changing national health system, emphasizes the key role of planning in the process of creating a comprehensive system of palliative care. In contrast, Dr. von Gunten emphasizes the importance of individual initiative in both starting and sustaining a system of palliative care at Northwestern Memorial Hospital.