The purpose of this paper is to elaborate upon barriers to research participation by older adults at end-of-life. We focus on the hospice setting and classify barriers to research participation into six domains:1) societal attitudes towards death; 2) research procedures; 3) health care organizations; 4) agency staff; 5) patients’ families and caregivers; and 6) patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, infringements upon patient self-determination, as well as, potential solutions to these research challenges. Our observation of the complex palliative context included the realization that a singular change would not have large enough impact. We concluded that simultaneous with the need to expand the research base addressing the needs of dying persons is a need to understand the challenges of implementing research projects with older persons at end-of-life.

Gathering first hand or reported information about patients in the final stages of terminal cancer is difficult due to patient frailty, cognitive impairment, excessive fatigue and severity of illness, as well as gatekeeping by hospice providers and caregivers, and highly variable documentation practices. Objective We sought to further understand and elucidate end-of-life experiences in older cancer patients through the application of validated tools employed in the hospice setting. This paper summarizes data collected about pain, non-pain symptoms, and other aspects of quality of life (QOL) as reported by older hospice patients or their caregivers during the first two weeks of hospice care. Design Data was collected from an ongoing IRB approved research project with 94 older adults with cancer or their caregivers receiving service in a home setting from 14 Midwestern hospices. Participants completed one or two telephone interviews. Instruments used to gather information include the Brief Pain Inventory (BPI) and the Brief Hospice Inventory (BHI). Results Data analysis showed mean “worst pain” ratings significantly decreased from interview 1 to interview 2 and pain reports were significantly correlated with fatigue, anxiety, appetite, comfort, symptom control and overall QOL. Conclusions Our findings reinforce previously held views that older patients with cancer experience pain and non-pain symptoms. And both pain and non-pain symptoms can impact and confound the treatment of other symptoms and interfere with the patient's overall QOL. The results of this study support the assertion that hospice care can have a positive impact on pain severity and related suffering, as well as patient QOL as death approaches.

Documentation is a key factor in supporting consistency and quality of patient care in the hospice setting, however variation among program provider practices, including documentation, were observed during the initial data collection phase of our National Cancer Institute (NCI) funded study, Cancer Pain in Elders: Promoting Evidence-Based Practices (EBPs) in Hospices. The study is a randomized trial to test a multifaceted intervention to promote adoption and maintenance of EBPs for cancer pain management involving 16 Midwestern hospices of varied size and structure. In the face of such variance, and especially in the absence of uniformly adopted outcome measures and documentation standards, quality improvement initiatives in this important and growing healthcare sector will be difficult to manage. This paper provides background on the importance of documentation, quality measures, outcomes of care, and regulatory imperatives in the hospice setting with specific observations from our research study and suggestions for changes in documentation practices.From our observations, we posit the necessity of pertinent outcome measures supported by standardized documentation processes in hospice. Uniformity in key practice indicators and patient outcome measures in documentation systems would advance the movement to improve quality and consistency of care in hospices. Standardization of documentation systems and language would also facilitate the conduct of research in the hospice setting, a population for which advancing knowledge is essential to assure quality care at the end of life.

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