Addressing Global Palliative Care Disparities
In This Article
- The 194 member states of the World Health Organization unanimously declared palliative care to be an ethical responsibility of all health care systems, yet most of the developing world lacks access to palliative care
- Barriers to adequate palliative care access include lack of palliative care training and home-grown leaders in the developing world, lack of government policies recognizing palliative care as an official medical specialty and unwarranted fear of opioids
- The Global Palliative Care Program at Massachusetts General Hospital and Harvard Medical School partners with ministries of health, medical schools and major hospitals in developing countries to help implement palliative care training and services
- Dr. Krakauer and his team are working with partners in Latin America, francophone and anglophone Africa, the Caribbean, the Middle East, Southeast Asia and the Russian Federation toward establishing regional palliative care training and research centers
- Palliative care is crucial to relieve dyspnea and psychosocial distress during the COVID-19 pandemic
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Palliative medicine focuses on preventing and relieving suffering caused by serious illnesses. In 2014, the World Health Organization (WHO) resolved that it "is the ethical duty of health care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured" and that "palliative care is an ethical responsibility of health systems." However, according to the WHO, there is limited or no access to palliative care in 74% of countries, most of which are low- or middle income countries.
To address this disparity, Massachusetts General Hospital researchers are collaborating with ministries of health and health systems around the world to implement sustainable palliative care training programs and clinical services. Through their work with the WHO, they've also created guidance documents for integration of palliative care into health systems in low- and middle-income countries.
"Palliative care developed very quickly in the U.S. and Europe beginning in the 1970s through the 2000s, but that didn't happen in low- and middle-income countries," says Eric L. Krakauer, MD, PhD, attending physician in the Division of Palliative Care and Geriatrics at Mass General and director of the Global Palliative Care Program at Mass General and Harvard Medical School. "We write hundreds of journal articles about which statin to use to lower cholesterol, but relatively little attention is paid to the sea of unnecessary suffering in the developing world. One of the major goals of our program is to assist colleagues at carefully chosen sites in the developing world to create regional, sustainable medical school-based departments or units that provide all levels of palliative care education."
Understanding Barriers to Palliative Care in Low-Income Settings
Dr. Krakauer began applying lessons learned from palliative care in the U.S. internationally in Vietnam in the early 2000s. He began working there with support from the U.S, Centers for Disease Control and Prevention to build a training and technical assistance program in HIV/AIDS care. Once that program was established, he changed his focus to palliative care, his medical specialty. In recent years, he helped to develop palliative care services in several major hospitals and in Vietnam, establishing one of the first academic palliative care departments in the developing world at the University of Medicine and Pharmacy in Ho Chi Minh City. Dr. Krakauer now serves as a visiting associate professor and honorary chair of that department.
"Globally, we go through the same process as in the US to help colleagues understand what we offer, to make clear that we're not threatening or criticizing—we're just trying to help our colleagues do better for their patients," he says.
Dr. Krakauer says these barriers to accessible palliative care around the world are among the most common:
Lack of Government Policies Recognizing Palliative Care as an Official Medical Specialty and Requiring Palliative Care Training
"Without government policies or strategic plans on palliative care, major improvements in access are unlikely," he says. For this reason, Dr. Krakauer has provided technical assistance the Vietnam Ministry of Health on the palliative care guidelines. He and his team also work with various branches of the WHO to encourage and assist palliative care policy development.
Lack of Palliative Care Training Programs and Home-grown Palliative Care Leaders in the Developing World
Doctors from low- and middle-income countries rarely have an opportunity to obtain specialist training in palliative care. Yet, local palliative care specialists are essential in being the palliative care implementers, teachers and leaders in their countries. A main objective of Dr. Krakauer and his team is to help establish specialist training programs in and for the developing world.
Historically, European colonizers used opioids to stifle political opposition and uprisings and generate income. Further antipathy developed toward opioids during the European and American temperance movements of the 19th and early 20th centuries. These efforts yielded laws forbidding opioids in European colonies.
"When the colonies became independent, they kept some of these laws," says Dr. Krakauer. "Palliative care is closely associated with opioids and morphine, so there's been a lot of legal and cultural obstacles to overcome."
The opioid stigma often remains even when laws change.
"Doctors frequently need permission to prescribe opioids, but their boss may not want to give it. They may fear that they're going to get in trouble or fired," he says.
Limited Financial Resources
Ministries of health in low- and middle-income countries often function with inadequate financing. "So when someone comes saying they need to put money into a new field, they may assume they don't need it or can't afford it," says Dr. Krakauer.
But palliative care—particularly with home care—can save money for health care systems by reducing:
- Unnecessary hospital readmissions, especially for symptom control near the end of life
- Length of stays in overcrowded public hospitals as patients get symptom control in the community
- Expensive life-sustaining treatments of questionable benefit
While these outcomes have been observed in high-income and two upper-middle income countries (Romania and South Africa), there isn't data for the poorest countries.
"That's a key research question that we're trying to address in Vietnam and Rwanda," says Dr. Krakauer. In Vietnam, they are investigating whether insurance coverage of palliative home care might reduce costs by decreasing hospital admissions.
Morphine costs are also a barrier—the drug costs more in the poorest African countries than it does in Boston.
"Small, poor countries have not been able to negotiate with drug companies to get the price down," he says.
Protocol for Implementing Palliative Care in Low- and Medium-Resource Countries
Dr. Krakauer's team, in collaboration with the WHO, developed guidance documents for integrating palliative care into primary care, pediatrics and responses to humanitarian emergencies and crises. This integration process typically has six steps:
1. Needs Assessment
Palliative care is a response to local needs and thus should be tailored to local needs.
"People suffer differently in different places," says Dr. Krakauer. "We developed a new method for estimating palliative care needs in each country using disease categories, implementation costs and required resource needs. We made this contribution through The Lancet Commission on Palliative Care, and the WHO now uses this method."
2. Policy Changes
Health care workers cannot implement palliative care protocols on a large scale without government policies and strategic plans. Dr. Krakauer's team often recommends beginning with a simple national policy that says palliative care should be accessible to all.
"Once the policy is in place, everyone can use it to galvanize action," says Dr. Krakauer, who has helped create and edit palliative care implementation guides as a medical officer and then consultant for palliative care at the WHO. "Then, they can move on to strategic plans that begin with the needs assessment, clinical guideline development, resourcing and a timeline. For example, there must be policies that say opioids should be accessible, how health care workers will manage them and the safeguards they will utilize to prevent illicit use."
Through his role as a faculty member of the now-defunct International Pain Policy Fellowship, Dr. Krakauer spent several years mentoring ministry of health officials and palliative care champions from Vietnam, Nepal, Bangladesh and Rwanda to review opioid accessibility laws and regulations to uncover and overcome barriers to care. He published his findings in the Journal of Pain and Symptom Management.
3. Essential Medicine Accessibility
Palliative care typically does not require expensive medicines. Oral and injectable morphine are the most critical—and rarely available for the global poor.
"Most people suffer because they don't have access to an incredibly cheap, safe, effective medicine," says Dr. Krakauer.
Ongoing education requires sustainable programs and departments. The WHO recommends three educational levels:
- Basic: one to two weeks of full-time training for all medical, nursing and pharmacy students and primary care providers
- Intermediate: two to three weeks of full-time training for doctors who commonly treat patients with palliative care needs
- Specialist: training specialists to be future palliative care leaders and teachers
Dr. Krakauer's team at the University of Medicine & Pharmacy in Ho Chi Minh City, Vietnam, focuses a large share of their work on palliative care education, implementing basic training for medical and nursing students and intermediate palliative care training for resident- and fellow-level physicians and specialists in:
- Critical care
- Internal medicine
They also initiated palliative care specialist training for Vietnamese doctors in 2019. On this basis, there are plans to open the specialist training program to the entire Southeast Asia region. Dr. Krakauer's Boston-based team is working to create similar regional palliative care training and research centers for:
- Latin America
- The Caribbean
- The Russian-speaking world
- Anglophone and francophone Africa
5. Clinical Service Implementation
"You can't have a good clinical education program unless you have sustainable and high-quality palliative care services where you can provide clinical training," says Dr. Krakauer. "Typically, we start at the referral hospitals because there needs to be supervision for lower levels, and then we move to the lower-level hospitals. Next, we integrate services into community-based care because most patients who need palliative care are at home, but there needs to be the supervision and referral capability in place."
6. Research and Quality Assurance
Using locally palliative care assessment tools, ministries of health and vested parties can assess the effectiveness and cost of palliative care services.
Global Palliative Care Education in the Time of COVID-19
Dr. Krakauer notes that palliative care education and delivery should play an important role in these areas during the COVID-19 pandemic:
Dyspnea can be severe and may come on suddenly. It requires aggressive treatment, including opioid doses that are not familiar to most non-palliative care specialists.
"There needs to be an understanding of how to aggressively treat respiratory failure if the patient does not want to go to the ICU and receive mechanical ventilation or there's been a decision to stop mechanical ventilation because it looks ineffective and the patient is not going to survive," says Dr. Krakauer. "Even in patients who are short of breath but not yet having respiratory failure or who are on noninvasive ventilatory support, opioids can help relieve dyspnea and the resulting anxiety."
COVID-19 hospitalization limits human connection, breeding feelings of fear and isolation, says Dr. Krakauer. "Family can't be around. Even clinicians and social workers are not able to spend large amounts of time with the patient and wear gowns and masks that reduce connectedness. So there's a role for tools to minimize those feelings of isolation, such as smartphones and other screens and psychosocial support for patients and families."
Protections for Vulnerable Populations
"Palliative care is about preventing and relieving suffering. In the setting of the COVID pandemic, nursing home residents, the poor and people who live in crowded conditions such as prisons and certain neighborhoods are suffering the most. To me, it is completely consistent with palliative care to advocate to protect the most vulnerable and those who provide essential services, including clinicians and sanitation and food service workers."
Learn more about the International Program for Palliative Care
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