Stephen R. Connor

Special ArticleMapping Levels of Palliative Care Development: A Global Update

Our purpose is to categorize palliative care development, country by country, throughout the world, showing changes over time. We adopt a multi-method approach. Development is categorized using a six-part typology: Group 1 (no known hospice-palliative care activity) and Group 2 (capacity-building activity) are the same as developed during a previous study (2006), but Groups 3 and 4 have been subdivided to produce two additional levels of categorization: 3a) Isolated palliative care provision, 3b) Generalized palliative care provision, 4a) Countries where hospice-palliative care services are at a stage of preliminary integration into mainstream service provision, and 4b) Countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision. In 2011, 136 of the worlds 234 countries (58%) had at least one palliative care service--an increase of 21 (+9%) from 2006, with the most significant gains having been made in Africa. Advanced integration of palliative care has been achieved in only 20 countries (8.5%). Total countries in each category are as follows: Group 1, 75 (32%); Group 2, 23 (10%); Group 3a, 74 (31.6%); Group 3b, 17 (7.3%); Group 4a, 25 (10.7%); and Group 4b, 20 (8.5%). Ratio of services to population among Group 4a/4b countries ranges from 1:34,000 (in Austria) to 1:8.5 million (in China); among Group 3a/3b countries, from 1:1000 (in Niue) to 1:90 million (in Pakistan). Although more than half of the worlds countries have a palliative care service, many countries still have no provision, and major increases are needed before palliative care is generally accessible worldwide.

Survey on Use of Palliative Radiotherapy in Hospice Care

PURPOSE Radiation oncologists and hospice professionals both provide end-of-life care for oncology patients, and little has been written about the interface between these two groups of specialists. Hospice professionals were surveyed to assess the perceived need for palliative radiotherapy in the hospice setting, to investigate factors that limit the access of hospice patients to radiotherapy, and to suggest areas of future collaboration on education, research, and patient advocacy. PATIENTS AND METHODS Members of the National Hospice and Palliative Care Organization (NHPCO) and American Society for Therapeutic Radiology and Oncology jointly authored a questionnaire to investigate the beliefs of hospice professionals toward the use of radiotherapy for oncology patients in hospice. The questionnaire was distributed to all NHPCO member institutions, and the results were compiled and statistically analyzed. RESULTS Four hundred eighty of more than 1,800 surveyed facilities responded to the questionnaire. The findings suggest that the majority of hospice professionals feel that radiotherapy is important in palliative oncology and that radiotherapy is widely available in the United States. Yet less than 3% on average of hospice patients served by hospices responding to the survey actually received radiotherapy in 2002. The most common barriers to radiotherapy in hospice care include radiotherapy expense, transportation difficulties, short life expectancy, and educational deficiencies between the specialties. CONCLUSION Multiple barriers act to limit the use of palliative radiotherapy in hospice care. Finding ways to surmount these obstacles will provide opportunity for improvement in the end-of-life care of cancer patients.

Does Hospice Improve Quality of Care for Persons Dying from Dementia

OBJECTIVES: To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members.

Generating an African palliative care evidence base: The context, need, challenges, and strategies

The enormous burden of progressive, incurable disease in sub-Saharan Africa is reflected in the epidemiology of cancer and HIV. However, there has been little research activity and evidence generated to inform appropriate and effective responses. A collaborative of clinicians, academics and advocates have been active in the design, delivery and reporting of research activities in African palliative care. Here, they report the methodological, ethical, logistic and capacity-based challenges of conducting research in the sub-Saharan context from their experience. A number of strategies and responses are presented.

Referring a Patient and Family to High-Quality Palliative Care at the Close of Life : We Met a New Personality ... With This Level of Compassion and Empathy

Palliative care services are increasingly available to primary care physicians for both expert consultations and services to seriously ill patients. The United States now has more than 1400 hospital-based palliative care teams and more than 4700 hospice programs. We use an illustrative case of a palliative care hospitalization and intervention for a middle-aged man with severe pain from spinal metastases to discuss 4 key questions that a primary care physician faces in caring for the seriously ill patient with difficult symptom management: (1) Should I refer a patient to a hospital-based palliative care team or to hospice services for difficult symptom management? (2) If the patient is referred to a hospital-based palliative care team, what should I, as the primary care physician, expect? (3) When should I refer to hospice services a patient initially referred to a hospital-based palliative care team? and (4) How can I choose a hospice program that will provide competent, coordinated, and compassionate patient- and family-centered care? Primary care physicians now may choose among hospice programs, and the programs may vary in their quality of care. Validated tools to measure patient and family perceptions of the quality of hospice care are now available but progress in defining and measuring the quality of hospice care is still needed before actionable information will be available to guide the choice of hospice programs for physicians and consumers.

U.S. Hospice Benefits

The remarkable growth of palliative care in the United States in the last 25 years has been fueled by the expansion of Medicare to include a hospice benefit. Medicare provides health insurance for qualified elderly individuals and Medicaid covers the poor. Hospice benefits are the same for both Medicare and Medicaid. Over one million elderly Americans make use of this benefit annually. Private insurers often mirror the Medicare benefit. Increasingly, hospice patients in the United States are patients with diagnoses other than cancer. Although national average length of service has increased to over two months, median length of service has declined to 20 days, with both more long- and short-term periods of service. U.S. hospice care is predominantly care delivered in the place the patient calls home (95.6%). Although the hospice benefit has provided palliative care for more patients and families than any other country, the requirements for use have been found to be self-limiting.

Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis

CONTEXT The need for childrens palliative care (CPC) globally is unknown. To understand the scope of the need and to advocate to meet it, more accurate estimates are needed. OBJECTIVES The objective of this study was to create an accurate global estimate of the worldwide need for CPC based on a representative sample of countries from all regions of the world and all World Bank income groups. METHODS This work builds on previously published methods developed by the International Childrens Palliative Care Network, United Nations Childrens Fund, and World Health Organization and tested in three African countries. The study used a cross-sectional design with quantitative data obtained from primary and secondary data sources. Estimation of the need used prevalence data from the Institute for Health Metrics and Evaluation, mortality data from the World Health Organization for the specific diseases known to require CPC, and Joint United Nations Programme on HIV/AIDS (UNAIDS) data on HIV prevalence. Representative data were analyzed for 23 countries representing 59.5% of the worlds population. RESULTS The findings show estimated need for CPC ranged from almost 120 per 10,000 children in Zimbabwe to slightly more than 20 per 10,000 in the United Kingdom. Overall, among the over 21 million with conditions that will benefit annually from a palliative care approach, more than eight million need specialized CPC worldwide. CONCLUSION The estimation of need for CPC is a critical step in meeting the needs of children with life-threatening conditions and provides a sound platform to advocate for closure of the unacceptably wide gaps in coverage.

Palliative and end-of-life care in the global response to multidrug-resistant tuberculosis

Multidrug-resistant (MDR) tuberculosis is costly, difficult to treat, and poses a global threat to tuberculosis control. The high burden of disease and treatment for patients, poor cure rates, and high mortality bring distress to patients, families, and caregivers. Despite guidance to improve treatment outcomes, little attention has been paid to palliative care of patients and families, such as for physical, psychosocial, social, and spiritual difficulties. An international expert symposium was convened to articulate an appropriate palliative care response for people with MDR tuberculosis. Several policies should be updated to ensure that palliative and end-of-life care is in place alongside treatment should cure be achieved, and to the end of life if not. Many services have been developed that exemplify integrated palliative care (ie, provided from within existing tuberculosis care). We recommend that existing expertise within palliative care can be used, which will improve management of problems such as dyspnoea, cachexia, and haemoptysis for patients across care settings, including at home, and enhance performance of control programmes.

Alternative Routes to Oral Opioid Administration in Palliative Care: A Review and Clinical Summary

OBJECTIVE A major goal of palliative care is to provide comfort, and pain is one of the most common causes of treatable suffering in patients with advanced disease. Opioids are indispensable for pain management in palliative care and can usually be provided by the oral route, which is safe, effective, and of lowest cost in most cases. As patients near the end of life, however, the need for alternate routes of medication increases with up to 70% of patients requiring a nonoral route for opioid administration. In order to optimize patient care, it is imperative that clinicians understand existing available options of opioid administration and their respective advantages and disadvantages. METHODS We performed a literature review to describe the most commonly used and available routes that can substitute for oral opioid therapy and to provide a summary of factors affecting choice of opioid for use in palliative care in terms of benefits, indications, cautions, and general considerations. RESULTS Clinical circumstances will largely dictate appropriateness of the route selected. When the oral route is unavailable, subcutaneous, intravenous, and enteral routes are preferred in the palliative care population. The evidence supporting sublingual, buccal, rectal, and transdermal gel routes is mixed. CONCLUSIONS This review is not designed to be a critical appraisal of the quality of current evidence; rather, it is a summation of that evidence and of current clinical practices regarding alternate routes of opioid administration. In doing so, the overarching goal of this review is to support more informed clinical decision making.

Declaration on palliative care and MDR/XDR-TB.

THE WORLD Health Organization (WHO) estimated a prevalence of 650 000 cases of multidrugr esistant tuberculosis (MDR-TB) in 2010. Although efforts to improve cure rates in drug-resistant TB are vital, the global average reported cure rate was 53%.1 Meanwhile, at least 150 000 deaths occur annually due to MDR-TB.2 Efforts to provide palliative and end-of-life care to those suffering from this condition are very limited. Some model programmes emerging in Africa, Asia and Eastern Europe have demonstrated that palliative and end-of-life care can be added to current treatment programmes. MDR-TB patients, and those affected by extensively drug resistant TB (XDR-TB), a subset of MDR-TB that is even more diffi cult to treat, experience severe suffering that could be addressed more effectively through systematic inclusion of competent palliative care services in TB treatment programmes. In 115 surveyed countries, the Global Project on Anti-Tuberculosis Drug Resistance Surveillance found proportions of MDR-TB among previously untreated TB patients ranging from 0% to nearly 30% of presenting cases. The number of people who died from TB fell to 1.4 million in 2010, including 350 000 people with human immunodefi ciency virus (HIV) infection.3 However, unlike the poor success rate reported in MDR-TB, drug-susceptible TB is curable in most cases. As of January 2012, 78 countries had reported at least one case of XDR-TB to the WHO. Recent South African data show that among a cohort of XDR-TB patients, most of them co-infected with HIV, nearly a quarter died prior to initiation of treatment for XDR-TB, and almost half subsequently died in the fi rst year of treatment.4 TB, particularly in its most severe forms, MDR-TB and XDR-TB, can thus be considered as a life-threatening condition from the moment of diagnosis.5 Palliative care as defi ned by the WHO6 should be provided for any life-threatening illness from the point of diagnosis through to the end of life. Efforts to extend palliative care expertise to MDR/XDR-TB treatment are still rare. Current policy and strategy on TB care and control should make a more explicit reference to palliative and end-of-life care, and the r espective guidelines should be more comprehensive, addressing not only the physical dimension, but also the psychological and social suffering associated with the illness. In December 2010, a meeting of TB and palliative care experts was held in Geneva under the sponsorship of the WHO Stop TB Department, the Open Society Foundations and the Worldwide Palliative Care Alliance. The meeting resulted in a call to action to expand efforts to include palliative care in the global response to MDR/XDR-TB. We endorse the following declaration, and call upon the TB and palliative care communities to work together to improve adherence to MDR/XDR-TB treatment and cure rates, and to help relieve the suffering of all those affected by the disease, including those we are unable to cure.