The evaluation of a newborn for an abnormal screening result was highly stressful for parents. To help reduce parents' distress, improvements in communications and clinical services are needed. Recommendations of useful Internet sites and discussions of this information may benefit parents. Tailoring counseling to meet the needs of culturally and educationally diverse families is needed. Families and infants with equivocal results are a new group of patients who merit comprehensive clinical follow-up.
The internet is an integral part of health care and an important source of information for newborn screening parents. Parents may benefit from recommendations of credible websites and discussions of internet information with health care providers.
Objective
To examine using audio-recorded encounters the extent and process of companion participation when discussing treatment choices and prognosis in the context of a life-limiting cancer diagnosis.
Methods
Qualitative analysis of transcribed outpatient visits between 17 oncologists, 49 patients with advanced cancer, and 34 companions.
Results
46 qualifying companion statements were collected from a total of 28 conversations about treatment choices or prognosis. We identified a range of companion positions, from “pseudo-surrogacy” (companion speaking as if the patient were not able to speak for himself), “hearsay”, “conflation of thoughts”, “co-experiencing”, “observation as an outsider”, and “facilitation”. Statements made by companions were infrequently directly validated by the patient.
Conclusions
Companions often spoke on behalf of patients during discussions of prognosis and treatment choices, even when the patient was present and capable of speaking on his or her own behalf.
Practice Implications
The conversational role of companions as well as whether the physician checks with the patient can determine whether a companion facilitates or inhibits patient autonomy and involvement. Physicians can reduce ambiguity and encourage patient participation by being aware of the when and how companions may speak on behalf of patients and by corroborating the companion's statement with the patient.
Context
Despite rapid proliferation of hospital-based palliative care consultation services (PCCS) across the country, there is little description of the dynamic processes that the PCCS and the non-PCCS hospital cultures experience during the institutionalization of a successful PCCS.
Objectives
To describe the institutionalization of a new PCCS in a quaternary care academic medical center (AMC) and highlight two themes, cost and quality, that pervaded the dynamics involved from the inception to the successful integration of the service.
Methods
Ethnography using longitudinal field observations, in-depth interviews, and the collection of artifacts. The study was performed in a 750-bed quaternary care ACM in the northeastern region of the U.S. Participants were a purposefully selected sample (n = 79) of (a) senior-level institutional administrators, including clinical leaders in nursing, medicine, and social work, (b) clinicians who used the PCCS, either commonly or rarely, and (c) members of the PCCS core and extended teams.
Results
Key infrastructure components that contributed to the successful integration of the PCCS included: top level interprofessional administrative buy-in to the quality and cost arguments for PCCS, PCCS leadership selection, robust data collection strategies emphasizing quality outcome data, the adoption of the “physician referral only” rule, and incremental and sustainable growth. The PCCS service has grown an average of 23% per year from 2003–2009.
Conclusion
An in-depth understanding of the dynamic interaction of the infrastructures and processes of a successful institutionalization, in their unique complexity, may help other PCCSs identify and negotiate attributes of their own circumstances that will increase their chances for successful and sustainable implementation.
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