“If Not Us, Then Who? If Not Now, Then When?” - The Need for Resource Stratified Guidelines

Aging population with multiple comorbid conditions, combined with enhanced expectations of the high-quality end of life care place a high burden on both generalist and specialist palliative care.

Although a large proportion of these people has advanced cancer, those with end-stage organ failure, neurodegenerative diseases, and advanced dementia also need comprehensive and timely access to specialist palliative care.

Most patients who are diagnosed with cancer in developing countries have advanced disease that is not amenable to curative treatment. The economic and political situation of various countries influence factors such as presence of screening programs, presence of cancer diagnostic and treatment services (especially in sparsely populated and rural areas), legal restrictions on access to essential drugs to relieve pain, and a medical culture in which quality-of-life considerations are undervalued in relation to imperatives to treat.

Hence, the model of care should depend on the economic circumstances and diversity of settings within and across countries.

Health professionals working in developing countries are not fortunate enough to apply therapeutic guidelines that may provide clear, evidence-based recommendations for patient therapy. However, these guidelines are at times best suited to the needs of their community and most effective with the resources available. These guidelines are usually based on governmental policies/spending and may have local pharmaceutical influence. These may not be readily applicable and extrapolated to our setting. Hence, there is a need to establish a consensus on appropriate norms and standards (and quality indicators by which they can be measured), which are respectful of different cultural, religious, and political traditions.

Increased collaboration is needed between the low and middle-income countries to associate and develop palliative care standards so that improved, competent care can be provided to patients with cancer and their families.

In resourceful countries, patients have an overtly medicalized death, with admission to intensive care units and protracted and expensive treatments that could be regarded as futile. The goal is to strike a balance between normalization of dying in an environment that sustains human dignity and offers respect for cultural values and beliefs and recognition that excellent pain and symptom control requires skilled medical intervention, compassionate nursing care, and affordable drugs.[1]

It is important to prioritize treatment best practices that will most effectively cover the health care needs in limited-resource regions, where patients commonly present with more advanced disease at diagnosis, and to provide resource allocation guidance to maximize outcomes in a systematic fashion.

By collecting and interpreting evidence and categorizing them by resource availability, resource-stratified guidelines provide recommendations for countries on how to improve their situation and advise physicians on how to provide the best care possible within limited resources. These guidelines can then provide a linkage among clinicians, governmental health agencies, and advocacy groups to translate guidelines into policy and practice.

A simple, pragmatic strategy for guideline development would be to identify the objectives, key decisions and their consequences, to review the relevant, valid evidence on the benefits, risks, and costs of alternative decisions and to finally present the evidence required to inform key decisions in an accessible format that is simple, patient specific, user friendly for clinical practice.[2]

Asian Oncology Summit recommended a four-tiered, resource-based approach to permit incremental improvements in cancer pain management, based on outcomes, cost, cost-effectiveness, and use of health care services.

Basic level indicates fundamental or core services that are absolutely necessary for any pain and palliative system to function (e.g., availability of basic drugs such as paracetamol, step 2 opioids, immediate-release morphine). Limited level includes second-tier services that intend to produce major improvements in outcomes and are achievable with scant financial means and the modest infrastructure (e.g. diagnostic imaging for assessment of pain, drugs such as neuropathic pain adjuvants, controlled-release morphine, and interventions like palliative radiotherapy). Enhanced level includes third-tier services that are optional in a resource-constrained setting but are important and should produce further improvements in outcome and increase the number and quality of palliative options and choices for patients (e.g., varied drug formulations such as transdermal fentanyl and intravenous morphine titration, restricted interventions such as celiac plexus neurolysis, access to physical and psychological therapy). Maximum level represents services that might be used in settings with many resources, or that might be recommended in cancer guidelines that do not account for resource constraints but that should be judged lower priority than resources or services listed in the basic, limited, or enhanced categories, on the basis of their great cost or impracticality for broad use in a resource-limited environment (e.g., interdisciplinary assessment including occupational therapy, pharmacotherapy with opioids in all available formulations and a full range of adjuvants including bisphosphonates, and a wide range of interventions such as neurolysis, regional anesthesia, and neuraxial analgesic infusions). To be useful, resources at the maximum level always depend on the existence and functionality of all lower-level resources.[3]

The need for strategic planning and teamwork cannot be undermined for effective implementation. A comprehensive, long-term, horizontally- and vertically-linked strategy needs to be developed. It should cover the entire organization with all its systems and procedures. Long-term improvements will not be accomplished without permanent changes in the level of employee involvement; without changes in the points of authority, responsibility, and decision-making; without changes in management philosophies, styles, and relations; and without changes in work culture.

Strategic thinking and action are a tough challenge. The first step requires finding the motivation to begin.

Resource stratified guidelines can be an important tool in our fight for a better quality of life.