Journal of palliative medicine
-
Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED. Objective: To explore the experiences of caregivers who supported a patient through VSED. Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U. ⋯ Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.
-
Background: Latinos are the largest minority group in the United States and when compared with non-Latino whites suffer from higher rates of certain chronic diseases. Latino community health workers (promotores de salud) are successful in improving the health of their communities. However, evidence of their effectiveness in increasing awareness of palliative care (PC) is limited. ⋯ Interviews with promotores at follow-up established four themes: (1) holistic health in chronic disease management; (2) communication with doctors; (3) shared decision making, patients' rights, and control; and (4) need for PC information (awareness, access, and support groups). Conclusion: Promotores proved effective at disseminating information related to PC within chronic disease management to Latino community members. Future training should include information on support groups and where caregivers can seek help while caring for those with a terminal disease.
-
Background: Cognitive prognostic awareness (PA) and emotional preparedness for a loved one's death are distinct but related phenomena. However, the distinction between these two concepts has not been studied in family caregivers. Objective: To examine whether these two concepts are distinct by comparing their evolution and predictors over cancer patients' last year. ⋯ Family caregivers were more likely to have accurate PA if they were 56-65 years old, the patient's adult child, and had more contact/communication with the patient and greater subjective caregiving burden. Conclusions/Implications: Family caregivers' emotional preparedness for death and cognitive PA were distinct, as supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Health care professionals should facilitate family caregivers' accurate PA and cultivate their emotional preparedness for death by enhancing patient-family contact/communication and easing their caregiving burden to improve quality of end-of-life care.
-
Background: Although there is growing evidence that close reading of literature and reflective writing can improve providers' appreciation of the patient experience, foster physician development, and combat burnout, there has been less work on the experience of reading literature with patients, and even less literature about its effect on those facing serious or life-threatening illness. In addition, longer form reading may be unsuitable for some patient populations, given high burden of fatigue and possible contribution of delirium. Time pressure may also preclude discussion by a practitioner working in a busy clinical context. ⋯ Potential therapeutic value includes helping patients to articulate pain and joy, giving patients a vehicle to recapture their creative voice, and altering the power dynamics inherit to the provider-patient relationship. We have also noted enhanced life review, often on themes otherwise difficult to access. In turn, these readings have deepened our ability to see out patients as creative, intellectual, and larger than their medical illness.
-
Randomized Controlled Trial
The Development of the Australian National Palliative Care Clinical Studies Collaborative "Integrating Qualitative Research into Clinical Trials Framework".
Qualitative methodologies have multiple contributions to health research, including improving baseline understanding in new areas of enquiry; questioning existing assumptions; understanding viewpoints of specific subgroups; and offering complex, contextual information. While the role of qualitative research within mixed methods approaches is well documented, the contribution to clinical trial design and conduct is less well recognized. ⋯ This practical framework provides real-world examples, including sample qualitative questions, to consider at each phase of controlled clinical trial development. As the number of randomized clinical trials in palliative care increases, a readily accessible approach to integrating qualitative research into clinical trial design and conduct is needed so that its full potential for improving study recruitment, conduct, outcomes, interpretation, and implementation may be realized.