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Improving Palliative Care in Low-Resource Settings

A Conversation With James F. Cleary, MD


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In 2016, ASCO published an update to its Clinical Practice Guideline, “Integration of Palliative Care Into Standard Oncology Care,” which provides evidence-based recommendations for symptom management, clarification of treatment goals, support of coping and distress management, and coordination of care from the time of a cancer diagnosis, through treatment, recurrence, and long-term survivorship or the end of life.1 Recognizing the differences in access to palliative care services across health-care settings, especially those in low- and middle--income countries, this past summer, ASCO published “Palliative Care in the Global Setting: ASCO Resource-Stratified Practice Guideline Summary,” which provides expert guidance to clinicians and policymakers for implementing research-based palliative care in resource-constrained settings.2

The recommendations outlined help to define the most practical models of delivery of palliative care to patients and their caregivers, staffing requirements, as well as the roles and training needs of palliative care team members in various resource settings. They also include suggestions for palliative care models based on local resources; timing of implementing palliative care; workforce, knowledge, and skills; the role of nurses in pain management; spiritual care; social work/counseling; and availability of opioid analgesics.

Each palliative care model recommendation is further categorized based on institutional level, including:

  • 1.0 General—The health-care system identifies and meets the palliative care needs of patients and families and should have trained personnel on staff who are licensed to prescribe and dispense opioids.
  • 1.1 Basic (primary health care)—Palliative care needs are addressed in the community or primary health-care center setting by primary health-care providers, nurses, community health workers, volunteers, and/or clinical officers.
  • 1.2 Limited (district hospital)—In addition to palliative care delivery in the community and primary health-care centers, outpatient palliative care services should be established. When a counselor is not available, psychosocial and spiritual needs may be addressed by staff trained in basic palliative care.
  • 1.3 Enhanced (regional hospital)—In addition to the community-based and outpatient palliative care services available at the limited level, inpatient consultation services should be available to hospitalized patients and provided by an interdisciplinary palliative care team; the team includes a physician, nurse, counselor, pharmacist, mental health expert, and spiritual counselor when possible.
  • 1.4 Maximal (national hospital)—In addition to the palliative care services available at the enhanced level, inpatient palliative care beds should be established, and the facility should be staffed with trained professionals.
James F. Cleary, MD

James F. Cleary, MD

The ASCO Post talked with the senior author of ASCO’s resource-stratified practice guideline, James F. Cleary, MD, Professor of Medicine, Director, and Walther Senior Chair of Supportive Oncology, Department of Medicine, Indiana University Simon Cancer Center, Indiana University School of Medicine, Indianapolis, about the challenges of providing palliative care services in low- and middle-income countries and what ASCO members can do to help ensure that more patients in these countries receive comprehensive palliative care.

Overcoming Challenges

Please talk about how some of the challenges facing patients with cancer in low-resource countries, including lack of access to palliative care services and pain medications, can be overcome.

Our resource-stratified practice guideline is an adjunct to ASCO’s 2016 Clinical Practice Guideline on Integration of Palliative Care into Standard Oncology Care. Most evidence and guidelines come from high-income countries, and research findings related to specialist-based palliative care interventions in tertiary care centers in these countries cannot easily be extrapolated to resource-poor settings.

One of the primary questions that comes up in low- and middle-income countries is not so much about how to integrate palliative care into standard oncology care, but rather what sort of standard oncology care do many of these countries have? In fact, most cancer care is grossly underresourced.

Although palliative care is not just for the dying, in some countries, that is still the primary focus….
— James F. Cleary, MD

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Eighty percent of the people with cancer in low- and middle-income countries present with advanced-stage disease,3 so one of the major challenges these countries face—as does the United States—is balancing the provision of palliative care with a focus on the relief of suffering and the use of often toxic anticancer therapies for which cure and significant life prolongation is unlikely.

Recently, The Lancet Oncology published its Commission report on the integration of oncology and palliative care. The report addresses the need both to treat the cancer and to preserve a patient’s well-being and quality of life during the course of the disease. It also calls for a system-level change in how the activities of medical professionals are coordinated to develop and implement new educational programs within oncology and palliative care to cover all aspects of cancer control, including prevention, screening, treatment, and palliative care.4

What ASCO’s guideline does is provide a framework for how to start implementing palliative care in low-resource countries. For example, we give the most practical models of palliative care delivery based on each setting’s resources. And although each country should provide basic palliative care in the community or at primary health-care centers, district-level facilities should include those services and outpatient palliative care services as well. Then as you move up to the regional and national centers, inpatient consultation services should be available to hospitalized patients with palliative care needs and staffed with trained professionals, including an interdisciplinary team with a physician, nurse, counselor, pharmacist, and, ideally, a mental health professional and spiritual adviser.

Deciding Where to Die

How do the palliative care needs of patients in high- and low-income countries differ?

We have limited data on how patient needs differ by country. There has been an interesting discussion within the palliative care community regarding the place of death. Although palliative care is not just for the dying, in some countries, that is still the primary focus, and the place of death can become a significant issue.

Our ultimate goal in the practice of cancer care is to remember that we are not just treating diseases. We are caring for people who are living with cancer.
— James F. Cleary, MD

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In North America, for example, most people say they want to die at home. But in low- and middle-income countries, it may be impractical to die at home, and being in a facility may be preferred in terms of comfort. This is not categorically true in every instance. There is very good home-based palliative care in Kerala, India, for example, but such care is not as widespread as in other -countries.

Shared experience is that in many low-resource countries, including some African countries, it is still taboo for clinicians to talk about prognosis and how much time a patient has left. Establishing goals of therapy as we provide integrated oncology and palliative care at every disease stage is seen as an important part of cancer care.

Unfortunately, as I mentioned previously, 80% of patients with cancer are diagnosed with late-stage disease, so oncology and palliative care in these countries is still focused care near the end of life.

Ensuring All Patients Have Comprehensive Palliative Care

In addition to providing the resource-stratified practice guideline for palliative care in the global setting, what more can ASCO and its members do to ensure that patients in low- and middle-income countries receive comprehensive palliative care?

The biggest step we can take is to continue to raise awareness of the importance of integrating palliative care into standard oncology care to make sure that all patients receive relief from their symptoms—not just their physical symptoms but their psychosocial concerns as well. We need to communicate more effectively with patients to address their needs and the overall goals of care. And we need to make sure that dying patients are made as comfortable as possible.

MORE ON PALLIATIVE CARE WORLDWIDE

For a discussion of global access to opioids, see an interview with James F. Cleary, MD, on The ASCO Post Newsreels at www.ascopost.com/videos.

ASCO has provided an important service to the palliative care community with its resource-stratified practice guideline, because it is a guide that can be used worldwide. ASCO has taken the lead on this issue, and now we need to take it further in collaboration with groups such as the European Society for Medical Oncology, the Worldwide Hospice Palliative Care Alliance, and the International Association for Hospice & Palliative Care.

Our ultimate goal in the practice of cancer care is to remember that we are not just treating diseases. We are caring for people who are living with cancer. Unfortunately, many of these patients living in low- and middle-income countries will die of this disease. 

DISCLOSURE: Dr. Cleary reported no conflicts of interest.

REFERENCES

1. Ferrell BR, Temel JS, Temin S, et al: Integration of palliative care into standard oncology care: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol 35:96-112, 2017.

2. Osman H, Shrestha S, Temin S, et al: Palliative care in the global setting: ASCO Resource-Stratified Practice Guideline Summary. J Oncol Pract 14:431-436, 2018.

3. Cazap E, Magrath I, Kingham TP, et al: Structural barriers to diagnosis and treatment of cancer in low- and middle-income countries: The urgent need for scaling up. J Clin Oncol 34:14-19, 2016.

4. Kaasa S, Loge JH, Aapro M, et al: Integration of oncology and palliative care: A Lancet Oncology Commission. Lancet Oncol 19:e588-e653, 2018.


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