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Improving Palliative Care for Cancer
both patients and their caregivers. Although the amount of improvement has not been well studied, it is very possible that patients now experience less distress related to medical procedures, that pain is somewhat better managed, and that there is wider recognition of and attention to end-of-life issues, such as patient preference for end-of-life decisions. Research has also documented the gaps between current care and optimal care and has identified very specific obstacles that could be addressed to improve care.
Perhaps less obvious has been a maturation of research methods that should facilitate the rapid progress of research in this area. Increasingly, the subjective reports of patients about their quality of life and about the severity and impact of their symptoms are accepted as reasonable outcome measures for both clinical and laboratory research. Developments in this type of methodology have been funded and have yielded tangible results. Quality-of-life outcomes have become more accepted as clinical trial end points, as has the prevention or reduction of specific symptoms. New technologies have been developed, primarily from other areas of investigation, that give us unique opportunities to understand the nature, mechanisms, and expression of symptoms that were not possible a few years ago. For example, new brain-imaging techniques may allow us to understand the cortical expression of symptoms (such as pain, depression, and cortical impairment) as well as the modification of this expression by treatment. New developments in biology have opened windows to a better understanding of distress, including the nature and interaction of receptors and transmitters. Developments in pharmacology have produced an array of exciting agents that could provide better control of most of the symptoms of the dying process. There is a real possibility that individual variation in symptom expression may be better understood through progress in genetic science. We can no longer say, as was said a few years ago, that we do not have the tools to advance this area.
We also have a wide range of targets for investigation. The understanding of pain, although more advanced than that for other symptoms, still has enormous gaps. Our understanding of other symptoms is much more primitive. We have only a limited understanding of the context of the dying process, including economic, social, and ethical factors. Research examining ways of improving the care given to patients with advanced cancer is just beginning. Ways of examining the more complex subjective needs of patients (spiritual, existential) have to be developed, and methods of qualitative research have to be strengthened. Few of the practices that we depend upon for the care of the dying and for the patient with advanced cancer have been subjected to the scrutiny of careful randomized clinical trials, impeding the provision of evidence-based practice recommendations.