Patient-Centered Care and Autonomy: Shared Decision-Making in Practice and a Suggestion for Practical Application in the Critically Ill

2019 ◽  
Vol 35 (11) ◽  
pp. 1352-1355
Author(s):  
Marianna V. Mapes ◽  
Peter A. DePergola ◽  
William T. McGee

Decision-making for the hospitalized dying and critically ill is often characterized by an understanding of autonomy that leads to clinical care and outcomes that are antithetical to patients’ preferences around suffering and quality of life. A better understanding of autonomy will facilitate the ultimate goal of a patient-centered approach and ensure compassionate, high-quality care that respects our patients’ values. We reviewed the medical literature and our experiences through the ethics service, palliative care service, and critical care service of a large community teaching hospital. The cumulative experience of a senior intensivist was filtered through the lens of a medical ethicist and the palliative care team. The practical application of patient-centered care was discerned from these interactions. We determined that a clearer understanding of patient-centeredness would improve the experience and outcomes of care for our patients as well as our adherence to ethical practice. The practical applications of autonomy and patient-centered care were evaluated by the authors through clinical interactions on the wards to ascertain problems in understanding their meaning. Clarification of autonomy and patient-centeredness is provided using specific examples to enhance understanding and application of these principles in patient-centered care.

2020 ◽  
Vol 5 (1) ◽  
pp. 173-180
Author(s):  
Rebecca Kelly-Campbell ◽  
Vinaya Manchaiah

Purpose This clinical focus article focuses on accessible hearing health information and is written in twofold. First, it outlines the connection between factors of patient-centered care, shared decision making, and health literacy on health outcomes. Second, it provides some practical strategies for providing and assessing accessible health information to promote patient-centeredness and shared decision making. Conclusion Health information accessibility will positively influence the treatment choices made by patients and the way in which they self-manage their health. Hearing health care professionals need to take proactive measures to ensure that the information provided in different mediums have easily readable language, adequate quality, suitability, understandability, and actionability to ensure accessibility of hearing health information.


Pharmacy ◽  
2021 ◽  
Vol 9 (1) ◽  
pp. 9
Author(s):  
Brian Isetts ◽  
Anthony Olson ◽  
Jon Schommer

Team-based, Patient-Centered Care is essential to chronic disease prevention and management but there are differing ideas about the concept’s meaning across healthcare populations, settings and professions. This commentary’s objective is to empirically evaluate the theoretical relationships of the [a] Medication Experience, [b] Patient-Centeredness and other relevant component concepts from pharmaceutical care (i.e., [c] Therapeutic Relationship, [d] Patient-specific preferences for achieving goals of therapy and resolving drug therapy problems) so as to provide practice-based insights. This is achieved using a secondary analysis of 213 excerpts generated from in-depth semi-structured interviews with a national sample of pharmacists and patients about Patient-Centeredness in pharmacist practice. The four component concepts (i.e., a–d) related to the objective were examined and interpreted using a novel 3-archetype heuristic (i.e., Partner, Client and Customer) revealing common practice-based themes related to care preferences and expectations in collaborative goal setting, enduring relationships, value co-creation and evolving patient expectations during challenging medical circumstances. Most practice-based insights were generated within the Partner archetype, likely reflecting high congruence with pharmacist and patient responses related to the Medication Experience and Therapeutic Relationship. The practice-based insights may be especially useful for new practitioners and students accelerating their advancement in providing effective and efficient Patient-Centered Care.


Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 32-33
Author(s):  
Srdan Verstovsek ◽  
Anne Jacobson ◽  
Jeffrey D Carter ◽  
Tamar Sapir

Background Care coordination can be especially challenging in the setting of rare malignancies such as myelofibrosis (MF), where hematology/oncology teams have limited experience working together to implement rapidly evolving standards of care. In this quality improvement (QI) initiative, we assessed barriers to patient-centered MF care in 3 community oncology systems and conducted team-based audit-feedback (AF) sessions within each system to facilitate improved care coordination. Methods Between 1/2020 and 3/2020, 31 hematology/oncology healthcare professionals (HCPs) completed surveys designed to characterize self-reported practice patterns, challenges, and barriers to collaborative MF care in 3 community oncology systems (Table 1). Building on findings from the team-based surveys, 39 HCPs from these centers participated in AF sessions to reflect on their own practice patterns and to prioritize areas for improved MF care delivery. Participants developed team-based action plans to overcome identified challenges, including barriers to effective risk stratification, care coordination, and shared decision-making (SDM) for patients with MF. Surveys conducted before and after the small-group AF sessions evaluated changes in participants' beliefs and confidence in delivering collaborative, patient-centered MF care. Results Team-Based Surveys: HCPs identified managing MF-associated anemia and other disease symptoms (42%), providing individualized care despite highly variable clinical presentations (29%), and developing institutional expertise despite low patient numbers (16%) as the most pressing challenges in MF care. For patients who are candidates for JAK inhibitor therapy, HCPs reported most commonly relying on current guidelines (71%) and clinical evidence (61%) to guide treatment selection. HCPs also considered drug safety/tolerability profiles (55%), personal or institutional experience (13%), and out-of-pocket costs for patients (13%); no participants (0%) reported incorporating patient preference into their decision-making. Teams were underutilizing SDM and patient-centered care resources; fewer than 50% reported providing tools to support adherence (48%), visual aids for patient education (47%), financial toxicity counseling (40%), resources for managing MF-related fatigue (36%), or counseling to reduce risk factors for CVD, bleeding, and thrombosis (26%). Small-Group AF Sessions: Across the 3 oncology centers, teams participating in the AF sessions (Table 1) shared a self-reported caseload of 97 patients with MF per month. HCPs reported a meaningful shift in beliefs regarding the importance of collaborative care: following the AF sessions, 100% of HCPs agreed or strongly agreed that collaboration across the extended oncology care team is essential for achieving MF treatment goals, an increase from 71% prior to the AF sessions (Figure 1). Participants also reported increased confidence in their ability to perform each of 6 aspects of evidence-based, collaborative, patient-centered care (Figure 2). In selecting which aspects of patient-centered care to address with their clinical teams, HCPs most commonly prioritized individualizing treatment decision-making based on patient- and disease-related factors (57%), followed by providing adequate patient education about treatment options and potential side effects (24%) and engaging patients in SDM (18%). To achieve these goals, 73% of HCPs committed to sharing their action plans with additional clinical team members; others committed to creating a quality task force to oversee action-plan implementation (15%) and securing buy-in from leadership and stakeholders (9%). Conclusions As a result of participating in this community-based QI initiative, hematology/oncology HCPs demonstrated increased confidence in their ability to deliver patient-centered MF care and improved commitment to team-based collaboration. Remaining practice gaps and challenges can inform future QI programs. Study Sponsor Statement The study reported in this abstract was funded by an independent educational grant from Incyte Corporation. The grantors had no role in the study design, execution, analysis, or reporting. Disclosures Verstovsek: ItalPharma: Research Funding; CTI Biopharma Corp: Research Funding; Promedior: Research Funding; Gilead: Research Funding; NS Pharma: Research Funding; Celgene: Consultancy, Research Funding; Novartis: Consultancy, Research Funding; Genentech: Research Funding; Sierra Oncology: Consultancy, Research Funding; PharmaEssentia: Research Funding; AstraZeneca: Research Funding; Incyte Corporation: Consultancy, Research Funding; Blueprint Medicines Corp: Research Funding; Protagonist Therapeutics: Research Funding; Roche: Research Funding.


2020 ◽  
Vol 10 (2) ◽  
pp. 95-101
Author(s):  
Anne Hogden ◽  
Camille Paynter ◽  
Karen Hutchinson

This perspectives paper discusses patient-centered care for people living with motor neuron disease. We identify challenges and offer solutions from the patient-centered care literature for this population in frontline care, service delivery, research and health system organization. Examples from Australian and international motor neuron disease care are used to illustrate interrelated issues for practice and policy.


2017 ◽  
Vol 25 (1) ◽  
pp. 94-95
Author(s):  
Melissa G. French

Abstract Health literacy and palliative care have been receiving more attention within health care organizations and systems in recent years. Both can offer a pathway to care that is better for patients and has the potential to be of high value. A health literate approach to palliative care provides patient-centered care that is better aligned with patient preferences and needs.


Author(s):  
Kori A. LaDonna ◽  
Christopher J. Watling ◽  
Susan L. Ray ◽  
Christine Piechowicz ◽  
Shannon L. Venance

AbstractBackground: Patient-centered care for individuals with myotonic dystrophy (DM1) and Huntington’s disease (HD)—chronic, progressive, and life-limiting neurological conditions—may be challenged by patients’ cognitive and behavioral impairments. However, no research has explored health care providers’ (HCPs’) perspectives about patient-centered care provision for these patients along their disease trajectory. Methods: Constructivist grounded theory informed the iterative data collection and analysis process. Eleven DM1 or HD HCPs participated in semistructured interviews, and three stages of coding were used to analyze their interview transcripts. Codes were collapsed into themes and categories.Results: Three categories including an evolving care approach, fluid roles, and making a difference were identified. Participants described that their clinical care approach evolved depending on the patient’s disease stage and caregivers’ degree of involvement. HCPs described that their main goal was to provide hope to patients and caregivers through medical management, crisis prevention, support, and advocacy. Despite the lack of curative treatments, HCPs perceived that patients benefited from ongoing clinical care provided by proactive clinicians. Conclusions: Providing care for individuals with DM1 and HD is a balancing act. HCPs must strike a balance between (1) the frustrations and rewards of patient-centered care provision, (2) addressing symptoms and preventing and managing crises while focusing on patients’ and caregivers’ quality of life concerns, and (3) advocating for patients while addressing caregivers’ needs. This raises important questions: Is patient-centered care possible for patients with cognitive decline? Does chronic neurological care need to evolve to better address patients’ and caregivers’ complex needs?


2020 ◽  
Vol 16 (2) ◽  
pp. 91-101
Author(s):  
Elizabeth Troutman Adams, MA ◽  
Elisia L. Cohen, PhD ◽  
Andrew Bernard, MD ◽  
Whittney H. Darnell, PhD ◽  
Douglas R. Oyler, PharmD

Objective: The American health care system's adoption of the patient-centered care (PCC) model has transformed how medical providers communicate with patients about prescription pain medication. Concomitantly, the nation's opioid epidemic has necessitated a proactive response from the medical profession, requiring providers who frequently dispense opioids for acute pain to exercise vigilance in monitoring and limiting outpatient prescriptions. This qualitative study explores how surgical trainees balance PCC directives, including shared decision making, exchanging information with patients, and relationship maintenance, with opioid prescribing vigilance.Design: Investigators conducted interviews with 17 surgical residents and fellows (trainees) who routinely prescribe opioids at an academic medical center.Results: A qualitative descriptive analysis produced four codes, which were reduced to themes depicting problematic intersections between PCC imperatives and opioid vigilance during post-operative opioid-prescribing communication: (a) sharing the decision-making process contended with exerting medical authority, (b) reciprocating information contended with negotiating opioid prescribing terms with patients, (c) maintaining symbiotic relationships contended with prescribing ethics, and (d) achieving patient satisfaction contended with safeguarding opioid medications.Conclusion: Surgical training programs must supply trainees with post-surgical prescribing guidelines and communication skills training. Training should emphasize how PCC directives may work in tandem with--not in opposition to--opioid vigilance.


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