49 A WHO guide for planners, implementers and managers
Need for research and quality improvement Ministries of health and health care planners can estimate the palliative care needs in their countries or
regions with existing documents such as the WHO Global atlas of palliative care at the end of life and
the report of the Lancet Commission on palliative care and pain relief
(1,11). However, accurate locally
generated data are more helpful to precisely characterize the health requirements of a given population
and to inform health care planning. Reliable data can provide information about the principal health
challenges facing a population and about treatment outcomes, making it easier for health systems to
prioritize investment of scarce resources. To optimize the benefit of palliative care integrated into PHC, it is
useful to understand the suffering of the target populations by means of a palliative care situation analysis.
It also is important to understand local attitudes to infirmity, suffering, dying and death. In addition,
it is important to measure the safety, effectiveness, value, and acceptability of palliative care once it is
implemented.
Situation analysis Data on needs, values and beliefs of patients in the community To design palliative care services that provide optimum benefit for a specific population, the most common
and most severe types of suffering should be studied. When no such data exist on the target population,
palliative care situation analyses can assess all categories of suffering: physical; psychological; social; and
spiritual. The target population may be small or large. It may be just one community, clinic population or
hospital
(25,107,108) or it may be an entire region or country (109,110). The situation analysis may use
multiple detailed surveys
(110), or it may use only one short survey. Ideally, data on types of suffering
should be collected directly from patients rather than from family members or clinicians. However, many
patients who are having discomfort or are near the end of life are unable to participate in long surveys.
Thus, there is a benefit to using very concise surveys that nevertheless address all types of suffering. One
example is the Palliative Outcomes Scale that exists in several forms for various populations and has been
validated in several languages
(111,112). This instrument can yield useful information both for researchers
and for clinicians. It is brief enough to be incorporated into routine hospital or clinic forms for recording
patient history and physical examination, and these forms, whether electronic or hardcopy, can be used
both for palliative care situation analysis and quality assurance, assuming appropriate research ethics
regulations are followed
(25).
Attitudes towards disability, suffering, dying, death and palliative care can also be studied with standardized
surveys. While no assumptions should be made about any individual patient based on ethnicity, religion,
perceived culture, sex, education or any other demographic parameter, and each patient’s views and values
should be explored, understanding of attitudes and values common in a target population is important for
developing optimum palliative care training and services
(113). Guidance is available on how to design
such research that is based on issues relevant to potential users, for example, patients and carers, and
thereby to avoid waste
(114). Involving the community in setting research agendas is recommended (115).
Integrating palliative care and symptom relief into primary health care