“Working the system”: The experience of being a primary care patient

Health care providers and system administrators are in the midst of a paradigm shift; moving from paternalism toward an egalitarian approach. For patient centred care to occur, health care providers must prioritize patient needs; provide information regarding treatments while taking patient preferences and expectations into account. While there is literature regarding patient centredness, there is less information from the patient perspective about the experience of being a patient and the influence on behaviour. Using phenomenological research methods and the theory of planned behaviour as a theoretical framework, this study addressed the questions, a) what is the essence of being a primary health care patient, and b) what influence do beliefs, attitudes, and experience have on people’s behaviour as a patient? Nineteen individuals participated. Seven shared elements of being a primary health care patient were identified and contributed to the development of a composite vignette. The patient experience was a socially oriented, governed and reinforced cyclical process. Patients described themselves as actively engaged in their health care – “working the system” to get what they needed, when they needed it. Patients changed their beliefs, attitudes and behaviour as a result of experiences with their physicians, and their perceived success or failure in acquiring the best health care possible. Being a patient was not a single, observable behaviour, but rather a set of contextually dependent strategies patients’ directed at the specific goal of getting the best healthcare possible. The theory of planned behaviour was unsuitable for understanding patients’ beliefs, attitudes and behaviour

Nurse Practitioner Autonomy in Georgia: Exploring Barriers to Full Practice Authority

Background: There is a significant shortage of primary care physicians in Georgia, with the greatest needs in rural communities. The evidence suggests that nurse practitioners (NPs) improve the quality of care for patients with chronic diseases and may be the solution to the physician shortage. However, the scope of practice for Georgia NPs is among the most restricted in the United States. Purpose: This policy review project explored the barriers to full practice authority for nurse practitioners in the state of Georgia and assessed the impact of current policy on NPs opening independent practices in rural Georgia. The goal of the project was to build a consensus for legislative change to current NP scope of practice. Methodology: A quantitative design was used to collect data from a large nursing organization in Georgia via convenience sampling. One hundred and seventy-nine NPs responded. However, only 135 participants (N=135) consented. Participants completed an online survey in thirty minutes or less. Some questions required free text responses. One-way ANOVA and correlational analysis were used to determine differences between variables. There were no significant differences between NP characteristics (such as race, age, education level, etc) and the likelihood of opening an independent practice. Results: Most NPs (77%) reported a desire for full scope of practice, 80% believed removal of practice barriers would be an advantage to Georgia NPs, and a significant number said if autonomous practice was granted, they were likely or very likely to open an independent practice in rural Georgia

Integrating Palliative Care Into the Care of Neurocritically Ill Patients: A Report From the Improving Palliative Care in the ICU Project Advisory Board and the Center to Advance Palliative Care.

OBJECTIVES: To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; to discuss key prognostic aids and their limitations for neurocritical illnesses; to review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; and to describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. DATA SOURCES: A search of PubMed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term palliative care, supportive care, end-of-life care, withdrawal of life-sustaining therapy, limitation of life support, prognosis, or goals of care together with neurocritical care, neurointensive care, neurological, stroke, subarachnoid hemorrhage, intracerebral hemorrhage, or brain injury. DATA EXTRACTION AND SYNTHESIS: We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert advisory board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. CONCLUSIONS: Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support will provide clinicians a framework to address decision making at a time of crisis that enhances patient/family autonomy and clinician professionalism

“Why Do We Always Have to Focus on the Bad”: A Strengths-Based Approach to Identify the Positive Aspects of Care From the Perspective of Older Adults Using a Secondary Qualitative Analysis

Hospitalization is often viewed as a burdensome and stressful period for older adults and their family caregivers; however, little attention has been given to the positive aspects of the care continuum journey. The purpose of this article is to highlight the positive aspects of healthcare from the perspective of Canadian older adults with complex needs and their family caregivers. This study utilized a strengths-based theoretical perspective to conduct a secondary qualitative analysis of interviews with 12 older adults and seven family caregivers. Four themes relating to positive aspects of care were identified, including: (1) looking beyond illness, (2) emotional support from healthcare providers, (3) timely discharge, and (4) upholding independence. Focusing on the positive aspects can help determine areas of care practice that currently work well. These insights will be valuable for current and future initiatives seeking to restructure and optimize healthcare services for older adults

Factors Underlying Patient and Surgeon Willingness to Participate in a Placebo Surgery Controlled trial

Objective:. To investigate the factors underlying willingness to participate in a hypothetical trial among patients and surgeons, to inform the design of future placebo surgery controlled trials. Background:. Placebo surgery controlled trials are the gold standard for testing the efficacy of surgical procedures. However, these trials commonly fail to meet the target sample size and terminate underpowered. Methods:. From October 2019 to July 2020, eligible patients were identified from the orthopedic waiting list at a single tertiary hospital and surgeons were identified from orthopedic clinics at three tertiary hospitals in Australia. Qualitative interviews explored factors underlying willingness to participate in a hypothetical trial, including understanding of trial concepts; attitudes; and trial design preferences. Data collection and analysis were conducted in parallel. Recruitment ceased when no new concepts emerged. Interview data were analyzed using reflexive thematic analysis. Results:. The majority of surgeons and only a few patients indicated a willingness to participate in a placebo surgery controlled trial. Factors underlying willingness were captured in four themes: (1) Understanding and attitudes toward placebo; (2) Attitudes towards randomization/perception of equipoise; (3) Perception of risk; and (4) Ethical concerns. Conclusions:. To optimize recruitment in the future, trialists may consider embedding strategies into the recruitment process that validate patients’ symptoms, encourage an altruistic mindset, address surgeon biases, and involve surgeons in explaining trial concepts to patients. Trialists may also consider designing three arm trials that meet surgeons’ preferences for a “low” and “high” fidelity placebo

Integrating Palliative Care into the PICU: A Report from the Improving Palliative Care in the ICU Advisory Board.

OBJECTIVE: This review highlights benefits that patients, families and clinicians can expect to realize when palliative care is intentionally incorporated into the PICU. DATA SOURCES: We searched the MEDLINE database from inception to January 2014 for English-language articles using the terms palliative care or end of life care or supportive care and pediatric intensive care. We also hand-searched reference lists and author files and relevant tools on the Center to Advance Palliative Care website. STUDY SELECTION: Two authors (physicians with experience in pediatric intensive care and palliative care) made final selections. DATA EXTRACTION: We critically reviewed the existing data and tools to identify strategies for incorporating palliative care into the PICU. DATA SYNTHESIS: The Improving Palliative Care in the ICU Advisory Board used data and experience to address key questions relating to: pain and symptom management, enhancing quality of life, communication and decision-making, length of stay, sites of care, and grief and bereavement. CONCLUSIONS: Palliative care should begin at the time of a potentially life-limiting diagnosis and continue throughout the disease trajectory, regardless of the expected outcome. Although the PICU is often used for short term postoperative stabilization, PICU clinicians also care for many chronically ill children with complex underlying conditions and others receiving intensive care for prolonged periods. Integrating palliative care delivery into the PICU is rapidly becoming the standard for high quality care of critically ill children. Interdisciplinary ICU staff can take advantage of the growing resources for continuing education in pediatric palliative care principles and interventions

Palliative Care in the ICU: Relief of Pain, Dyspnea, and Thirst-A Report From the IPAL-ICU Advisory Board

PURPOSE: Pain, dyspnea, and thirst are three of the most prevalent, intense, and distressing symptoms of intensive care unit (ICU) patients. In this report, the interdisciplinary Advisory Board of the Improving Palliative Care in the ICU (IPAL-ICU) Project brings together expertise in both critical care and palliative care along with current information to address challenges in assessment and management. METHODS: We conducted a comprehensive review of literature focusing on intensive care and palliative care research related to palliation of pain, dyspnea, and thirst. RESULTS: Evidence-based methods to assess pain are the enlarged 0-10 Numeric Rating Scale (NRS) for ICU patients able to self-report and the Critical Care Pain Observation Tool or Behavior Pain Scale for patients who cannot report symptoms verbally or non-verbally. The Respiratory Distress Observation Scale is the only known behavioral scale for assessment of dyspnea, and thirst is evaluated by patient self-report using an 0-10 NRS. Opioids remain the mainstay for pain management, and all available intravenous opioids, when titrated to similar pain intensity end points, are equally effective. Dyspnea is treated (with or without invasive or noninvasive mechanical ventilation) by optimizing the underlying etiological condition, patient positioning and, sometimes, supplemental oxygen. Several oral interventions are recommended to alleviate thirst. Systematized improvement efforts addressing symptom management and assessment can be implemented in ICUs. CONCLUSIONS: Relief of symptom distress is a key component of critical care for all ICU patients, regardless of condition or prognosis. Evidence-based approaches for assessment and treatment together with well-designed work systems can help ensure comfort and related favorable outcomes for the critically ill

Multistudy Research Operations in the ICU: An Interprofessional Pandemic-Informed Approach

OBJECTIVES:. Proliferation of COVID-19 research underscored the need for improved awareness among investigators, research staff and bedside clinicians of the operational details of clinical studies. The objective was to describe the genesis, goals, participation, procedures, and outcomes of two research operations committees in an academic ICU during the COVID-19 pandemic. DESIGN:. Two-phase, single-center multistudy cohort. SETTING:. University-affiliated ICU in Hamilton, ON, Canada. PATIENTS:. Adult patients in the ICU, medical stepdown unit, or COVID-19 ward. INTERVENTIONS:. None. MEASUREMENTS AND MAIN RESULTS:. An interprofessional COVID Collaborative was convened at the pandemic onset within our department, to proactively coordinate studies, help navigate multiple authentic consent encounters by different research staff, and determine which studies would be suitable for coenrollment. From March 2020 to May 2021, five non-COVID trials continued, two were paused then restarted, and five were launched. Over 15 months, 161 patients were involved in 215 trial enrollments, 110 (51.1%) of which were into a COVID treatment trial. The overall informed consent rate (proportion agreed of those eligible and approached including a priori and deferred consent models) was 83% (215/259). The informed consent rate was lower for COVID-19 trials (110/142, 77.5%) than other trials (105/117, 89.7%; p = 0.01). Patients with COVID-19 were significantly more likely to be coenrolled in two or more studies (29/77, 37.7%) compared with other patients (13/84, 15.5%; p = 0.002). Review items for each new study were collated, refined, and evolved into a modifiable checklist template to set up each study for success. The COVID Collaborative expanded to a more formal Department of Critical Care Research Operations Committee in June 2021, supporting sustainable research operations during and beyond the pandemic. CONCLUSIONS:. Structured coordination and increased communication about research operations among diverse research stakeholders cultivated a sense of shared purpose and enhanced the integrity of clinical research operations