Improving Access to Palliative Care and Essential Palliative Care Medicines in Lower- and Middle- Income Countries

In their Own Words: Advocates Describe Their Ongoing Work to Relieve Serious Health Related Suffering

Von Ebtesam Ahmed, Mary Callaway, Nahla Gafer, Harmala Gupta, Eve Namisango and Katherine Pettus

Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers (Radbruch, 2020). Although palliative care is now included alongside prevention, treatment, and rehabilitation in official resolutions and High Level Declarations of the United Nations (UN) Organizations, and although palliative care medicines, including opioids, are listed in the World Health Organization (WHO) Model List, only about 14% of people worldwide who need palliative care currently receive it (WHO, 2020). This article combines a brief discussion of global palliative care advocacy, which aims to improve access to services for all who need them, with the voices of front-line palliative care providers working in Egypt, Sudan, India, and Uganda.

In their Own Words: Advocates Describe Their Ongoing Work to Relieve Serious Health Related Suffering

COMMISSION ON NARCOTIC DRUGS, VIENNA meeting with Dr. Lukas Radbruch on the expert panel testifying on IAHPC's collaborations, including with the Lancet, to gather data on inadequate access to controlled medicines in more than 70& of the world. Photo: © Katherine Pettus

 

Vision and commitment of IAHPC

Katherine Pettus, Advocacy Officer of the International Association of Palliative Care (IAHPC), introduces the topic of global advocacy to improve access to palliative care.

Article 71 of the UN Charter explicitly recognizes the importance of partnerships with civil society, as they advance the Organization’s ideals, and help support the UN’s work (United Nations, 1945). As a civil society organization “in consultative status” with the United Nations Economic and Social Council (ECOSOC), and a “non-state actor” in official relations with WHO, IAHPC is entitled to participate in meetings of the United Nations Organizations (UNOGs) and, upon invitation, to contribute to expert committees and drafting processes. I prepare and lead the delegations that represent our global membership organization of palliative care providers at all UN meetings relevant to palliative care development, including the World Health Assembly (WHA) in Geneva, the Commission on Narcotic Drugs (CND) in Vienna, and the Open-Ended Working Group on Ageing (OEWGA) at UN Headquarters in New York.

Since IAHPC’s vision is “a world free from health-related suffering,” our Board has identified advocacy as a core area of work for 2020-2024.

Since IAHPC’s vision is “a world free from health-related suffering,” our Board has identified advocacy as a core area of work for 2020-2024. My co-authors, who are all members of our Board of Directors and of the Advocacy Working Group, are change agents in the nascent global palliative care movement. Their biographies can be found on our webpage. We all have so much to learn from one another’s experiences, and IAHPC is grateful to Medicus Mundi Switzerland for inviting IAHPC to air these voices from the global palliative care peripheries in this special issue.

 
The CanSupport team carries out a procedure in the home of a patient taking all safety precautions. Photo: © CanSupport India
 

Decades of advocacy for palliative care awareness-raising and education

Mary Callaway (former Director of the International Palliative Care Initiative at the Open Society Foundation from 1998 to 2014) and Eve Namisango, MSc, PhD Fellow, Kings College (African Palliative Care Association, Uganda)  reflect on the question “How can the situation regarding the lack of training in and low awareness of palliative medicine in low-income countries be improved?”

Mary, who is currently an international palliative care consultant, spent decades promoting the development of palliative care, particularly in Central Asia and the former Soviet Union, believes that “palliative care education should be integrated into medical and nursing school curricula, including post-graduate requirements. In addition, palliative care awareness-raising and education can be included in traditional and social media campaigns. Finally, palliative care education can be provided to community health workers through partnerships with local hospice and palliative care service providers or through cell phone messaging.”

Eve describes low awareness regarding the benefits of palliative medicine and palliative care as a widespread challenge in low-income settings. “Several strategies have been used with success in African countries. These include; stratified advocacy engagements with key stakeholders ranging from; communities at the grassroots, local governments, religious and cultural leaders as well as and national-level policymakers. Linking these initiatives with the global advocacy initiatives strengthens the key messages at national and regional levels and hence catalyzes the change process.

The African Palliative Care Association (APCA) and partners have used this holistic strategy at three global Congresses in ten years, holding sessions for African health ministers who endorsed declarations of support for palliative care (Rhee et al., 2017). Ongoing development of palliative care in the region can be seen in the stronger evidence base for research, ten countries with palliative care policies, more institutions providing palliative care education, an increase in the number of facilities providing palliative care, five countries that reconstituting oral morphine locally, and capacity building programs for the palliative care health workforce.”

 

Nurses at Hospital Divina Providencia in San Salvador care for an elderly patient. Photo: © Katherine Pettus

 

Bias and bureaucratic obstacles must be overcome

Harmala Gupta (Founder, CanSupport, India) and Ebtesam (“Sammi”) Ahmed (Palliative Care Pharmacist and Professor at St. John’s University in New York) discuss the problem of lack of access to internationally controlled essential medicines and how access can be improved.

Harmala says, It took CanSupport almost five years to obtain a license to dispense oral morphine, a vital component in treating pain. We had to wait until the Health Secretary of Delhi changed, to get a discussion going on simplifying rules for accessing oral morphine. His mother had recently died of cancer, in terrible pain, and so, unlike his predecessor, he could relate to what we were saying. Often it is persons who occupy these offices who determine change. Patience and persistence finally overcame resistance at many levels, as bureaucracies in general resist change. At the heart of palliative medicine/care is the valuing of each patient. Traditionally, patients have been seen from a medical perspective alone. Aligned with the palliative care core values, CanSupport has championed a more holistic appreciation of their needs and of the families supporting them. This is a difficult task in societies that have huge gaps in income and where religion, caste, region, gender, etc., define people. There are biases that must be consciously fought.

One which I have faced regularly is that a poor and illiterate person is necessarily stupid and therefore not worthy of attention.

 

One which I have faced regularly is that a poor and illiterate person is necessarily stupid and therefore not worthy of attention.Training must go hand in hand with the inculcation of values and constant monitoring and vigilance to ensure that these biases do not affect the provision of palliative medicine/care.”

Sammi describes the situation in Egypt, “with a population of more than 95 million and estimated 5-year cancer prevalence of more than 215,000 cases in 2012, health professionals, policymakers, patients and [where] the public still misunderstand pain management and treatment options. Pain is a common symptom especially in cancer: it is estimated that more than 50% of cancer patients experience pain (Kagawa-Singer, 2011), while 60%-90% of patients with metastatic advanced cancer experience moderate to severe pain. (Stjernsward J, 2003) The only available registered oral morphine preparation in Egypt is the 30 mg slow-release morphine (SRM) tablet. 

According to the Egyptian Narcotics Control Law, the maximum dose limit for tablets of morphine or its salts is 420 mg, which should not be exceeded in a single prescription, and the maximum for ampoules of morphine or its salts is 60 mg (Anonymous, 1999) For many advanced metastatic cancer patients, the 420 mg morphine dose may not be enough for even one day. This dose-limiting law, along with fears, misconceptions, and stigma about morphine, have shaped the morphine prescribing regulations of both the Ministry of Health (MOH) and the Health Insurance Organization (HIO) in Egypt. Additionally, opioids are only prescribed for cancer patients, and are only available in hospitals with oncology services and in government pharmacies, which makes them less accessible and costly, especially for those living far from major cities. Low morphine and other opioid consumption figures indicate very inadequate cancer pain control in Egypt.

Physicians, pharmacists, and nurses receive little training to no training and have limited adequate knowledge of pain assessment and management.

Physicians, pharmacists, and nurses receive little training to no training and have limited adequate knowledge of pain assessment and management. Alexandria University received approval for a Supportive Diploma from the Ministry of Higher Education for physicians, but this Diploma is only provided for oncologists.

 

A satisfied patient after a visit from the CanSupport Home care team; we can not change the final destination but every step along the way matters. Photo: © CanSupport India 

 

COVID-19 and the severe situation for chronically ill patients

Nahla Gafer, palliative care physician and oncologist in Sudan, shares her experience of COVID-19 in Khartoum.

 “It has been psychologically challenging for me and for my patients. The initial lock-down was announced for three weeks and you wonder how the simple day laborers will get enough to eat. You wonder about basic needs, if electricity or water are cut off, if your home or street security were to be compromised. Public transport and bridges are closed but you have patients living on the other side of the city running out of pain medications. You know, because they ring you. The hospital was closed suddenly for two weeks and nothing could be done. We finally managed to open the palliative care unit once a week to supply patients with essential pain medications. Health services are compromised as a result of unavailability of transportation; closure of bridges and hospitals; lack of information about which hospital/clinics are open, and unavailability of medicines. As a result, we had a surge in deaths due to corona and other diseases, including heart disease, malaria and diabetes. Medication shortages included essential hypertension treatment and even basic antifungal creams, tabs or ointments.”

 

The dominant global health ideology must change

A major challenge for palliative care advocates in the Lower- and Middle-Income countries, particularly in the wake of the COVID-19 pandemic, is the dominant global health ideology that prioritizes and finances the goal of reducing preventable mortality (“saving lives”), while ignoring mortality that can no longer be prevented. Implicit in this ideology and the policies that flow from it, is massive patient abandonment, which violates core considerations of equal moral respect and duty of care.

In most countries, the responsibility and task of caring for those with serious health related suffering and facing end of life, is assumed by private, charitable entities, an approach that has never been sustainable, and is still less so given the global burden of non-communicable and communicable diseases, as well as rapid population aging.

In most countries, the responsibility and task of caring for those with serious health related suffering and facing end of life, is assumed by private, charitable entities, an approach that has never been sustainable, and is still less so given the global burden of non-communicable and communicable diseases, as well as rapid population aging.

Transforming the dominant global health ideology entails educating palliative care clinicians “in country” – those who provide services at the bedside – to advocate with national policymakers and opinion leaders. Evidence based, person-centered advocacy will broaden global health discourses and praxis to mandate delivery of the same quality services for those at the end of life, as maternal child health care policies provide for those at the beginning. Transforming the discourse also entails infusing both national and global health policies with an ethic of compassion, one already central to palliative care, but one that, as Henri Nouwen said, “is not our spontaneous response to suffering. What we desire most is to do away with suffering by fleeing from it or finding a quick cure for it […] And so we ignore our greatest gift, which is our ability to enter into solidarity with those who suffer” (Nouwen, 2017).

 
Dr. Francisco Sabado, Corazon del SIervo, examining a home care patient in Santo Domingo. Photo: © Katherine Pettus

 

The IAHPC advocacy program and provides training and resources for regional and national palliative care associations around the world to support implementation of relevant UN resolutions, Political Declarations, and multilateral treaties that commit member states to including palliative care as an essential service in Primary Health Care and Universal Health Coverage packages. The latest resolution on COVID-19 response, adopted by the 73rd World Health Assembly in May 2020, directs member states to ensure access to palliative care alongside testing and treatment.

In addition, the updated (May 26, 2020) WHO Clinical Guidance on the Management of COVID-19  (WHO, 2020b) includes excellent sections on palliative care, treatment of older persons, clinical ethics, and the Essential Package of palliative care medications and services. It recommends that “Palliative care interventions should be made accessible at each institution that provides care for persons with COVID-19,” and that “Palliative care must be accessible for all patients with respiratory failure for whom ventilatory support will be withheld or withdrawn.” IAHPC suggests that national and regional palliative care associations present these key WHO documents to their ministries of health, education, and finance to support their advocacy for “building back better” after the pandemic and delivering on their multilateral commitments to include palliative care in public health systems.

 

References

 

Ebtesam Ahmed, Mary Callaway, Nahla Gafer, Harmala Gupta, Eve Namisango and Katherine Pettus

Katherine Pettus, Advocacy Officer of the International Association of Palliative Care (IAHPC), Access to Medicines, Treatment and Care.



Mary Callaway, former Director of the International Palliative Care Initiative at the Open Society Foundation from 1998 to 2014.



Eve Namisango, MSc, PhD Fellow, Kings College (African Palliative Care Association, Uganda) .



Harmala Gupta, Founder, CanSupport, India.



Ebtesam (“Sammi”) Ahmed, Palliative Care Pharmacist and Professor at St. John’s University in New York.



Nahla Gafer, palliative care physician and oncologist in Sudan, shares her experience of COVID-19 in Khartoum.

 

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