International Collaboration on Palliative Care Development Between ASCO and the Land of Hornbills.

PURPOSE: Palliative care in Sarawak is mainly provided by health care professionals with limited formal training in palliative care. Therefore, in 2020, collaborative work between Sarawak General Hospital, University Malaysia Sarawak, and ASCO began. This study reports on the outcome of this collaboration. METHODS: The collaboration was initiated with the first ASCO Palliative Care e-course, Train the Trainer program, International Development and Education Award-Palliative Care and translation of ASCO Palliative Care Interdisciplinary Curriculum resources. RESULTS: This collaboration has resulted in the change of practice of palliative care among the oncology team of Sarawak General Hospital. CONCLUSION: It encourages more timely palliative care referrals to ensure that patients with complex physical, psychosocial, and spiritual needs have the necessary input and support from the palliative care team throughout the course of patients' illnesses.

Caregiver emotional distress: external open-behaviour signs.

OBJECTIVES: To determine whether specific external signs of emotional distress (ESED) can be an indirect measure of emotional distress in caregivers. METHODS: A cross-sectional multicentre design was used. 148 primary caregivers of advanced cancer patients attended in four Spanish palliative care units participated in this study. The emotional distress of caregivers was measured using both the Emotional Distress of Caregivers Scale and a psychological interview. Health professionals collected data using a standard clinical interview process after a brief training period. RESULTS: More than half the caregivers (60%) presented with emotional distress. A positive correlation (r=0.566) was found between the intensity of ESED and emotional distress per se. Caregivers who presented emotional distress showed more ESED than those that did not (p<0.01). The study found significant differences for the categories 'visible signs of sadness, fear, crying, feeling overwhelmed' (p<0.001), 'difficulty in separating from the patient: family refuses to let the patient make decisions and insists on care' (p<0.001) and 'visible signs of anger, irritability or frequent disagreement with therapeutic measures' (p<0.001). No significant differences were found with respect to gender. The set of items to measure these external signs presented an adequate reliability assessed using Cronbach's alpha (α=0.773). CONCLUSIONS: The assessment of ESED in caregivers could serve as a useful method to assess their emotional distress. Incorporating the systematic assessment of these external signs as part of the assessment of the emotional distress of primary caregivers could improve the overall assessment and treatment provided to these caregivers.

Why oncologists should refer patients earlier for hospice care.

The majority of patients with advanced malignancy die with a predictable disease trajectory. Increasing use of chemotherapy and radiotherapy near the end of life has not changed that trajectory. For adults with advanced solid tumors, the period from becoming symptomatic to death of the patient is 4 to 6 weeks. Poor performance status is still the most important prognostic factor, among others that have been described. The data are now in; hospice care is the best standard of care for cancer patients, it is not an alternative to standard care. Payers for high-quality cancer care will expect referral with an interval of care--generally on the order of 4 to 6 weeks of enrollment--as a measure of quality cancer care given by the oncologist. In this article, prognostic data are summarized and a suggested approach for discussing hospice enrollment with patients is presented.

Strategic planning by the palliative care steering committee of the Middle East Cancer Consortium.

High quality comprehensive palliative care is a critical need for millions of patients and families, but remains only a dream in many parts of the world. The failure to do a strategic planning process is one obstacle to advancing education and pain prevention and relief. The Middle Eastern Cancer Consortium Steering Committee attendees completed an initial strategic planning process and identified "developmental steps" to advance palliative care. Underscoring the multi-disciplinary nature of comprehensive palliative care, discipline-specific planning was done (adult and pediatric cancer and medicine, pharmacy, nursing) in a separate process from country-specific planning. Delineating the layers of intersection and differences between disciplines and countries was very powerful. Finding the common strengths and weaknesses in the status quo creates the potential for a more powerful regional response to the palliative care needs. Implementing and refining these preliminary strategic plans will augment and align the efforts to advance palliative care education and pain management in the Middle East. The dream to prevent and relieve suffering for millions of patients with advanced disease will become reality with a powerful strategic planning process well implemented.

Spread the Word: There Are Two Opioid Crises!

Pain is associated with emotional and physical suffering that severely impacts quality of life. Many guidelines for the treatment of moderate to severe cancer pain indicate the use of opioids. For a small proportion of the global population, opioids are readily accessible, but are consequently also subject to risk of overuse and misuse. On the other hand, many regions provide limited access to licensed opioid therapeutics and patients struggle for better pain management. The use of prescription opioids for treatment of severe cancer and acute pain is well established, but opioid use in chronic non-cancer pain is controversial and not supported by the literature. The opioid crisis and the increasing overdose fatalities in some countries have resulted in a resurgence of opiophobia in these countries, but even worse, amplified opiophobia in countries with lower opioid consumption. In this narrative review, we highlight how the opioid crisis of overuse in some countries can negatively impact appropriate access to opioids elsewhere. The availability of opioids for clinical and recreational use differs between countries worldwide-this is an important factor in determining the occurrence of a 'crisis of recreational use of opioids' or a 'crisis of under-prescription of opioids' for pain management.

Looking Back, and Ahead: A Call to Action for Increasing the Hospice and Palliative Medicine Specialty Pipeline.

Thanks to the efforts of many individuals and organizations, the field of Hospice and Palliative Medicine (HPM) has undergone unprecedented growth over the last two decades. To meet the needs of seriously ill patients and families in inpatient, outpatient community setting in the future, the field of HPM must develop innovative strategies to expand the specialist workforce pipeline. With 148 programs participating in the National Residency Matching Program and 285 matched applicants in 2019, the specialty of HPM can barely replace those who are retiring or leaving the field. We call for a renewed and coordinated effort to increase the applicant pool for HPM fellowship positions, as well as greater access to specialist HPM training through expanded traditional fellowship programs and innovative specialist training pathways. Without such an expansion, our specialty will struggle to serve those patients and families who need us most.

Psychiatric issues in palliative care: recognition of depression in patients enrolled in hospice care.

Major depression is prevalent, difficult to assess, underrecognized, and undertreated in hospice settings. Furthermore, it is associated with significant morbidity and mortality. A retrospective chart review of 2716 patients receiving hospice care was conducted in order to determine the baseline rate of recognition of depression in patients with advanced, life-threatening illnesses by frontline hospice clinicians. Documentation of "depression" as either a diagnosis or problem was used as an estimate of how often these disorders were considered significant issues by the treating interdisciplinary team. Of the patients receiving home/long-term care, 10.8% (234/2168) had depression documented as a diagnosis or significant problem. The presence of recognized depression in this setting was associated with significant differences in gender, marital status, and terminal diagnoses. Total length of hospice care was also significantly longer. Of patients receiving inpatient care, 13.7% (75/548) had depression documented as a diagnosis or significant problem. Recognized depression in this setting was associated with significant differences in marital status, length of inpatient stay, and total time in hospice care. If documentation is representative of the care that the interdisciplinary teams provide, depression of any kind appears to be underrecognized in this population. In fact, it is on the low end of prevalence estimates in the literature. Improved depression assessment is needed in order to minimize the impact of depression on patients living with advanced, life-threatening illnesses.

Palliative Care Development in Mongolia.

CONTEXT: Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. METHODS: Systematic reviews and observational studies on palliative care development in Mongolia have taken place over the past 16 years. RESULTS: Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department. Palliative care is included in the Mongolia's Health Law, Health Insurance Law, Social Welfare Law, National Cancer Control Program, and the National Program for Non-Communicable Diseases, and has approved Palliative Care Standards and Pain Management Guidelines. Palliative care education is included in the undergraduate and postgraduate curriculum in all medical universities. Six hospice units in Ulaanbaatar have 50 beds; each of the nine districts and all 21 provinces have up to four to five palliative beds, and there are 36 palliative care units, for a total 190 beds for three million people. In 2014, a pediatric palliative care inpatient unit was established with five beds. Essential drugs for palliative care have been available in Mongolia since 2015. The pharmaceutical company IVCO produces morphine, codeine, pethidine, and oxycodone in Ulaanbaatar. CONCLUSION: Mongolia has made real progress in integrating palliative care into the health system.

Leadership Development Initiative: Growing Global Leaders Advancing Palliative Care.

The International Palliative Care Leadership Development Initiative (LDI) was a model demonstration project that aimed to expand the global network of palliative care leaders in low- and moderate-resource countries who are well positioned to apply their new leadership skills. Thirty-nine palliative medicine physicians from 25 countries successfully completed the two-year curriculum that included three thematic residential courses, mentorship, and site visits by senior global palliative care leaders and personal projects to apply their new leadership skills. The focus on self-reflection, leadership behaviors and practices, strategic planning, high-level communication, and teaching skills led to significant personal and professional transformation among the participants, mentors, and the LDI team. The resulting residential course curriculum and the personal leadership stories and biosketches of the leaders are now available open access at IPCRC.net. Already, within their first-year postgraduation, the leaders are using their new leadership skills to grow palliative care capacity through significant changes in policy, improved opioid/other medication availability, new and enhanced educational curricula and continuing education activities, and development/expansion of palliative care programs in their organizations and regions. We are not aware of another palliative care initiative that achieves the global reach and ripple effect that LDI has produced.

Palliative Care in the Global Setting: ASCO Resource-Stratified Practice Guideline.

Purpose The purpose of this new resource-stratified guideline is to provide expert guidance to clinicians and policymakers on implementing palliative care of patients with cancer and their caregivers in resource-constrained settings and is intended to complement the Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update of 2016. Methods ASCO convened a multidisciplinary, multinational panel of experts in medical oncology, family medicine, radiation oncology, hematology/oncology, palliative and/or hospice care, pain and/or symptom management, patient advocacy, public health, and health economics. Guideline development involved a systematic literature review, a modified ADAPTE process, and a formal consensus-based process with the Expert Panel and additional experts (consensus ratings group). Results The systematic review included 48 full-text publications regarding palliative care in resource-constrained settings, along with cost-effectiveness analyses; the evidence for many clinical questions was limited. These provided indirect evidence to inform the formal consensus process, which resulted in agreement of ≥ 75% (by consensus ratings group including Expert Panel). Recommendations The recommendations help define the models of care, staffing requirements, and roles and training needs of team members in a variety of resource settings for palliative care. Recommendations also outline the standards for provision of psychosocial support, spiritual care, and opioid analgesics, which can be particularly challenging and often overlooked in resource-constrained settings. Additional information is available at www.asco.org/resource-stratified-guidelines . It is the view of ASCO that health care providers and health care system decision makers should be guided by the recommendations for the highest stratum of resources available. The guideline is intended to complement but not replace local guidelines.

The public health strategy for palliative care.

The quality of life of at least 100 million people would have improved--if today's knowledge of palliative care was accessible to everyone. A Public Health Strategy (PHS) offers the best approach for translating new knowledge and skills into evidence-based, cost-effective interventions that can reach everyone in the population. For PHSs to be effective, they must be incorporated by governments into all levels of their health care systems and owned by the community. This strategy will be most effective if it involves the society through collective and social action. The World Health Organization (WHO) pioneered a PHS for integrating palliative care into a country's health care system. It included advice and guidelines to governments on priorities and how to implement both national palliative care programs and national cancer control programs where palliative care will be one of the four key pillars of comprehensive cancer control. The WHO PHS addresses 1) appropriate policies; 2) adequate drug availability; 3) education of policy makers, health care workers, and the public; and 4) implementation of palliative care services at all levels throughout the society. This approach has demonstrated that it provides an effective strategy for integrating/establishing palliative care into a country.

Integrating palliative care into national policies.

Good policies lay the groundwork for an effective health care system and society. They facilitate the implementation of palliative care programs aimed at providing care for all people in need of these services, and they ensure equitable access to affordable medications and therapies. The lack of good policies can lead to unnecessary suffering and costs for patients, families, and society. Three-quarters of cancer patients worldwide are incurable when diagnosed. Because the size of the problem--and the suffering associated with cancer--is enormous, development of a national cancer control policy is an effective point of entry to begin integrating palliative care into a country's health care system. To be comprehensive, every cancer center must include palliative care. Ideally, palliative care is incorporated as a priority within all aspects of each country's national health plan, so that all patients living with or dying from any chronic disease may have their suffering relieved, including children and the elderly. To this end, policies that address essential medicines must include a list of palliative care medications. Supplies of affordable, generic medications that are "equally efficient" must be adequate and available throughout the country wherever patients live (especially opioids for pain control).

Implementing quality palliative care.

Quality palliative care is of interest to everyone who is receiving or providing care. The quality of the care that is provided depends on everyone's understanding of the underlying model that is guiding patient/family care; the organization's mission and vision; and the consistency of the language, practice and treatment guidelines, outcome assessment and performance improvement strategies that everyone is using from day-to-day. Implementation of quality palliative care within an organization starts with careful strategic planning followed by the systematic development of guidelines, outcome measures, indicators, standards and a performance improvement process through an inclusive consensus-building process. By modifying existing widely-accepted models, organizations can expedite their implementation of quality palliative care. Through careful attention to evolving this process over time, everyone will be the benefactors of a high-quality palliative care experience.

Mongolia: establishing a national palliative care program.

Mongolia has established the foundation measures for a national palliative care program. Generic cost-effective opioids have been made available. Prescription regulations have been changed to allow opioid use according to good medical practice. Education on palliative care has been incorporated into the undergraduate curricula of doctors, nurses, and social workers, and the training of specialists in palliative care has been initiated concurrent with established standards for palliative care.

Jordan palliative care initiative: a WHO Demonstration Project.

A model for pain relief and palliative care for the Middle East has been established in Jordan. King Hussein Cancer Centre (KHCC) in Amman is now a truly comprehensive cancer center as it includes palliative care for inpatients, outpatients, and patients at home. This is especially important in a country and a region where over 75% of the cancer patients are incurable when diagnosed. To support effective palliative care delivery, there have been many significant changes in Jordan between 2001 and 2006. Regulations governing opioid prescribing have been changed to facilitate effective pain management. The national opioid quota has been increased. Cost-effective, generic, immediate-release morphine tablets are being produced in Jordan. Intensive, interactive bedside training courses for doctors, nurses, and clinical pharmacologists have started to overcome opiophobia and motivate health care professionals to take up palliative care as a profession. "Champions" for palliative care have emerged who are leading the development of palliative care in Jordan's health care systems and starting to support neighboring countries to develop pain relief and palliative care. While before 2003, fewer than 250 patients per year received palliative care, by 2006 more than 800 patients per year were receiving pain relief and palliative care through the KHCC and Al Basheer Hospital. The achieved changes and the unusually rapid and effective institutionalization of palliative care serve as a model for other countries in the Middle East region as to what should be done and how.

Evaluating the California Hospital Initiative in Palliative Services.

BACKGROUND: Inpatient palliative care programs can improve care of patients with serious illness. We developed the California Hospital Initiative in Palliative Services (CHIPS) program to assist hospitals in establishing these programs. CHIPS included an introductory conference followed by 10 months of mentoring with telephone calls, e-mails, on-site consultation at the hospital, and a reunion conference. METHODS: To evaluate CHIPS and the factors associated with establishing inpatient palliative care programs, we conducted a cross-sectional telephone survey of leaders from the 38 hospitals that participated in CHIPS. We assessed the number of inpatient palliative care consultation services established by hospitals that participated in CHIPS (success) and hospital characteristics associated with success. RESULTS: Participants gave CHIPS high ratings. Six hospitals (16%) had a palliative care consultation service at enrollment in CHIPS and 19 hospitals (60%) established one after participation in CHIPS (P<.001). In bivariable comparisons, successful hospitals were more likely to have a hospitalist program (P = .003) or to be located in an urban setting (P = .03). CONCLUSIONS: CHIPS seemed to help many hospitals establish inpatient palliative care programs. Hospitals with hospitalists and those in an urban setting were more likely to succeed in developing palliative care programs. Future studies should focus on the quantity and quality of care provided by these programs.

A Prognostic Indicator for Patients Hospitalized with Heart Failure.

BACKGROUND: Current methods for identifying patients at risk of dying within six months suffer from clinician biases resulting in underestimation of this risk. As a result, patients who are potentially eligible for hospice and palliative care services frequently do not benefit from these services until they are very close to the end of their lives. OBJECTIVE: To develop a prospective prognostic indicator based on actual survival within Centers for Medicare and Medicaid Services (CMS) claims data that identifies patients with congestive heart failure (CHF) who are at risk of six-month mortality. METHODS: CMS claims data from January 1, 2008 to June 30, 2009 were reviewed to find the first hospitalization for CHF patients with episode of care diagnosis-related groups (DRGs) 291, 292, and 293. Univariate and multivariable analyses were used to determine the associations between demographic and clinical factors and six-month mortality. The resulting model was evaluated for discrimination and calibration. RESULTS: The resulting prospective prognostic model demonstrated fair discrimination with an ROC of 0.71 and good calibration with a Hosmer-Lemshow statistic of 0.98. Across all DRGs, 5% of discharged patients had a six-month mortality risk of greater than 50%. CONCLUSION: This prospective approach appears to provide a method to identify patients with CHF who would potentially benefit from a clinical evaluation for referral to hospice care or for a palliative care consult due to high predicted risk of dying within 180 days after discharge from a hospital. This approach can provide a model to match at-risk patients with evidenced-based care in a more consistent manner. This method of identifying patients at risk needs further prospective evaluation to see if it has value for clinicians, increases referrals to hospice and palliative care services, and benefits patients and families.

Models, standards, guidelines.

This article reviews the current illness experience for elders, highlights key issues that cause suffering and affect the quality of life of elders in our society, and reviews the definition and the process for providing palliative care. A consensus-building process is described, which any hospice or palliative care organization can use to adapt existing consensus and evidence-based models, standards of practice, and preferred practice guidelines and engage all staff and stakeholders in the development of an organizational model to guide day-to-day practices and improve the quality of all its activities.

Last hours of living.

The last hours of living can be one of the most important times in the life of any patient and his/her family. With appropriate preparation and careful management of the process by skilled clinicians, dying and death can be a comfortable and even rewarding experience for everyone involved. After death, careful attention to the grief of survivors can help them cope with their loss and rebuild their lives.

Competency in end-of-life care: last hours of life.

Clinical competence, willingness to educate, and calm and empathic reassurance are critical to helping patients and families in the last hours of living. This review adapted from the Education for Physicians on End-of-Life Care (EPEC) Curriculum describes the predictable course that occurs as well as approaches to management. Management principles are the same at home or in a health care institution. However, death in an institution requires accommodations to assure privacy, cultural observances, and communication that may not be customary. In anticipation of the event, it helps to inform the family and other professionals about what to do and what to expect. Care does not end until the family has been supported with their grief reactions and those with complicated grief helped to get care. Care at the end of life is a core competency.