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Unequal Burden of Cancer-Related Suffering and Need for Palliative Care


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The global burden of cancer-related suffering is tremendously unbalanced, according to Eric L. Krakauer, MD, PhD, Director of the Global Palliative Care Program at Massachusetts General Hospital and Harvard Medical School, Boston and a lead coauthor of the Report of the Lancet Commission on Global Access to Palliative Care and Pain Relief.1 At the 2018 World Cancer Congress in Kuala Lumpur, Malaysia, Dr. Krakauer discussed the Lancet Report,2 which set out to quantify the global burden of serious health-related suffering, including cancer, and to address the massive inequities in the global provision of palliative care.

The Report of The Lancet Commission on Global Access to Palliative Care and Pain Relief was published in 2018 and presented by 61 authors.1 The Commission, led by the University of Miami in collaboration with Harvard T.H. Chan School of Public Health and Harvard Medical School, comprised health systems and global health and palliative care specialists from more than 25 countries. Felicia Marie Knaul, PhD, chaired the Commission and Paul Farmer, MD, served as its Co-Chair.


Of the world’s population, the 17% in high-income countries consume 91% of the world’s opioids. I hope you find this appalling, as I do.
— Eric L. Krakauer, MD, PhD

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“Of the world’s population, the 17% in high-income countries consume 91% of the world’s opioids. I hope you find this appalling, as I do,” said Dr. Krakauer, who served on the Lancet Commission. “Millions of vulnerable patients are suffering needlessly because they don’t have access to something as inexpensive, safe, and easy to provide as morphine.”

The Commission estimated the global burden of serious health-related suffering by identifying the life-limited and life-threatening conditions in the International Classification of Diseases (ICD)-10 that most commonly result in serious physical, psychological, social, or spiritual suffering, and thus a need for palliative care. Those in need were divided into two groups: “decedents,” patients who died in 2015, and “nondecedents,” patients who did not die in 2015, the year the data were analyzed.

The Commission selected 20 of the ICD-10 conditions that generate 95% or more of the global need for palliative care, of which malignant neoplasms and leukemia are 2. It was estimated that nearly 7.8 million decedents and 7.1 million nondecedents with malignant neoplasms were in need of palliative care in 2015. “That’s almost 15 million people with cancer who were in need of palliative care, and about 12 million, the poorest 80%, who didn’t receive it, that year alone,” revealed Dr. Krakauer. The numbers are much higher when noncancer-related diseases were included: 61.1 million people worldwide experienced approximately 6 billion days of serious health-related suffering in 2015, and 80% occurred in low- and middle-income countries.2,3

Afsan Bhadelia, PhD

Afsan Bhadelia, PhD

According to Afsan Bhadelia, PhD, Research Associate in the Department of Global Health and Population at the Harvard T.H. Chan School of Public Health, Boston; Visiting Scholar at the University of Miami Institute for Advanced Study of the Americas, Miami; and also a lead coauthor of the Lancet Commission Report and Co-Chair of its Scientific Advisory Committee, global health measurements have historically focused on extending life and productivity, and the issue of suffering has been largely neglected. The Commission sought to develop a framework to quantify the global burden of serious health-related suffering.

“The Commission convened a diverse group of experts together: the health systems and global health experts were at the same table as palliative care experts. That hadn’t been done before,” said Dr. Bhadelia, who presented an overview of the activities of TheLancet Study Group.3 “This work was initially spawned from the Global Task Force on Expanded Access to Cancer Care and Control, wherein we highlighted the disparities in cancer morbidity and mortality and identified different facets of the cancer divide. One of them was pain, due to a major gap in access to palliative care.”

Global Estimates of Cancer-Related Suffering in 2015

The Commission identified four categories of suffering and within each category the most important specific types of suffering. For example, physical suffering included chronic pain, dyspnea, andnausea/vomiting; psychological suffering included anxiety/worry and depressed mood; social suffering included inadequate housing, lack of adequate food, and stigmatization; and spiritual suffering included loss of sense of meaning of life and loss of faith. These estimates were based on an exhaustive literature review; then they were evaluated and adjusted by an expert panel of palliative care physicians who were from low- and middle-income countries and/or had experience in the delivery of palliative care in those countries.

Palliative care is not just for the last days of life; it is to be implemented early—even at the time of diagnosis—in the case of serious illness.
— Eric L. Krakauer, MD, PhD

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“Part of the problem with palliative care is that most of the leaders in it have historically been from rich countries, so they may not have the best appreciation of the needs in low- and middle-income countries,” Dr. Krakauer noted. “We took pains to make sure our panel consisted of experts from those countries.”

“We decided that we didn’t have the ability to make estimates of social and spiritual suffering; this was beyond our capabilities,” said Dr. Krakauer. “But we do know they are major causes of suffering, and we also know that these types of suffering can be relieved.”

Using data from the World Health Organization Global Health Estimates, the Commission estimated the number of people in need of palliative care due to each of the 20 ICD-10 conditions globally and in every country in the world. It then estimated the prevalence and duration of each physical and psychological symptom associated with each of the conditions. For example, among decedents with malignant neoplasms in 2015, 7.8 million needed palliative care. Based on the literature review and expert opinion, an estimated 80% of them—about 6 million—had moderate or severe pain for an average of 90 days. An estimated 2.6 million (35%) had dyspnea for an average of 90 days,1.5 million (20%) had nausea/vomiting for an average of 120 days, and almost half had depressed mood for an average of 150 days.4

Global Agreement on Palliative Care: ‘An Ethical Responsibility’

In 2014, the World Health Assembly Resolution 67.19 focused on strengthening palliative care. Unanimously, representatives from the 194 member countries agreed that palliative care “is an ethical responsibility of health systems” and “… 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.”

The World Health Assembly stressed the need for the integration of palliative care into primary care, with an emphasis on adequate training. “Most palliative care for patients with cancer must be provided in the community, because that’s where most of the patients are,” said Dr. Krakauer. “Yes, we need palliative care in the cancer hospitals, but most of the patients are in the community, and they won’t have palliative care specialists providing that care.” He noted that health-care systems may even save money if primary care providers are equipped with basic palliative care training.

Additionally, the World Health Assembly stated that efforts to minimize the risk of diversion of controlled medicines for illicit purposes “must not result in inappropriate regulatory barriers to medical access to such medicines.” Simply put, medicines—including opioids—need to be accessible to the patients who need them.

How Accessible Is Palliative Care?

The accessibility of opioid pain medicines is a proxy indicator of access to palliative care. “It’s not a good indicator, but it’s about the best we have right now,” Dr. Krakauer admitted.

Patients in low- and middle-income countries rarely have access to pain relief and palliative care. Of the world’s population of 7 billion, 83% live in low- and middle-income countries. About 5.5 million patients with terminal cancer live in these countries, as well as millions more with other serious illnesses such as cardiovascular disease, liver or renal failure, lung disease, or AIDS. However, low- and middle-income countries consume just 4% of the world’s opioids.1

“The amount of suffering going on in the world is unnecessary, shocking, and unacceptable,” said Dr. Krakauer. “Palliative care is not just for the last days of life; it is to be implemented early—even at the time of diagnosis—in the case of serious illness.” 

DISCLOSURE: Drs. Krakauer and Bhadelia reported no conflicts of interest.

REFERENCES

1. Knaul FM, Farmer PE, Krakauer EL, et al: Alleviating the access abyss in palliative care and pain relief: An imperative of universal health coverage: The Lancet Commission report. Lancet 391:1391-1454, 2018.

2. Krakauer EL: Estimating the global burden of cancer-related suffering: The report of the Lancet Commission on Global Access to Palliative Care and Pain Relief. 2018 World Cancer Congress. Presented October 2, 2018.

3. Knaul F, Bhadelia AB: Alleviating the access abyss in palliative care and pain relief—An imperative of universal health coverage: Key Findings and Overview of The Lancet Commission Report. 2018 World Cancer Congress. Presented October 2, 2018.

4. Lancet Commission on Global Access to Palliative Care and Pain Relief. Technical Appendix, 2017. Available at www.mia.as.miami.edu/_assets/pdf/Data%20appendix%20LCGAPCPC%20Oct122017_ONLINE-DRAFT%2012OCT17.pdf. Accessed November 30, 2018.


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