scholarly journals Treatability Statements in Serious Illness: The Gap Between What is Said and What is Heard

2019 ◽  
Vol 28 (3) ◽  
pp. 394-404 ◽  
Author(s):  
JASON N. BATTEN ◽  
BONNIE O. WONG ◽  
WILLIAM F. HANKS ◽  
DAVID C. MAGNUS
Keyword(s):  
Quality Of Life ◽  
Empirical Work ◽  
Good News ◽  
Shared Decision ◽  
Conversational Implicature ◽  
Intended Meaning ◽  
Loved One ◽  
Serious Illness ◽  
Treatable Condition

Abstract:Empirical work has shown that patients and physicians have markedly divergent understandings of treatability statements (e.g., “This is a treatable condition,” “We have treatments for your loved one”) in the context of serious illness. Patients often understand treatability statements as conveying good news for prognosis and quality of life. In contrast, physicians often do not intend treatability statements to convey improvement in prognosis or quality of life, but merely that a treatment is available. Similarly, patients often understand treatability statements as conveying encouragement to hope and pursue further treatment, though this may not be intended by physicians. This radical divergence in understandings may lead to severe miscommunication. This paper seeks to better understand this divergence through linguistic theory—in particular, H.P. Grice’s notion of conversational implicature. This theoretical approach reveals three levels of meaning of treatability statements: (1) the literal meaning, (2) the physician’s intended meaning, and (3) the patient’s received meaning. The divergence between the physician’s intended meaning and the patient’s received meaning can be understood to arise from the lack of shared experience between physicians and patients, and the differing assumptions that each party makes about conversations. This divergence in meaning raises new and largely unidentified challenges to informed consent and shared decision making in the context of serious illness, which indicates a need for further empirical research in this area.

Improving the Perception of Patient-Centered Wellness in a Virtual Population During the COVID-19 Pandemic

2021 ◽  
pp. JDNP-D-20-00078
Author(s):  
Sybilla Myers ◽  
Christopher Kennedy
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Shared Decision Making ◽  
Cognitive Theory ◽  
Well Being ◽  
Mobile App ◽  
Shared Decision ◽  
Patient Centered ◽  
The Social

BackgroundPerceived health-related quality of life (HRQOL) is fundamental to well-being and is a meaningful way to measure physical and mental health.Local ProblemNo standard method exists for measuring perceived HRQOL during the COVID-19 pandemic in participants as they attempt to improve their self-determined wellness goals. An implementation plan that considers the social distancing limitations imposed can be used to predict an individual’s likelihood of long-term success.MethodsDuring the four, 2-week plan-do-study-act (PDSA) cycles, the Social Cognitive Theory model informed the implementation of the four core interventions. To guide iterative changes, the data was analyzed through Excel and run charts.InterventionsThe four core interventions were the shared decision-making tool (SDMT), health mobile app tool (HMAT), wellness tracker tool (WTT), and the team engagement plan.ResultsAmong 28 participants, perceived quality of life increased by 70%, engagement in shared decision-making increased to 82%, app use and confidence increased to 85%, and goal attainment reached 81%.ConclusionsThe SDMT, health app, and wellness tracker created a methodical plan of accountability for increasing participant wellness. The contextual barrier of the COVID-19 pandemic added a negative wellness burden which was mitigated by creating a patient-centered culture of wellness.

What's in the Syringe?

2021 ◽  
Author(s):  
Juliet Jacobsen ◽  
Vicki Jackson ◽  
Joseph Greer ◽  
Jennifer Temel
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Clinical Experience ◽  
Clinical Skills ◽  
Psychological Skills ◽  
Illness Trajectory ◽  
Serious Illness ◽  
Case Based

What’s in the Syringe? Principles of Early Integrated Palliative Care, a guide for clinicians, teaches the psychological skills of outpatient palliative care. It does so based on a framework that articulates five challenges faced by patients through the illness trajectory. Each challenge forms the focus of a chapter. By helping patients meet each challenge, clinicians help them cope with serious illness. Patients thereby experience better quality of life and develop prognostic awareness. From this awareness, they can make informed medical and personal decisions. Each chapter focuses on clinical skills to support patients as they take up that challenge. Each chapter then ends with a discussion of how to collaborate with oncology colleagues around that challenge. Rich in illustrative examples and built around case-based chapters, the book draws on two decades of research and clinical experience.

Palliative Care

2015 ◽  
pp. 105-123
Author(s):  
May Hua
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Intensive Care ◽  
Critical Illness ◽  
Serious Illness ◽  
Surgical Units ◽  
Potential Benefits

Palliative care is a specialty of medicine that focuses on improving quality of life for patients with serious illness and their families. As the limitations of intensive care and the long-term sequelae of critical illness continue to be delimited, the role of palliative care for patients that are unable to achieve their original goals of care, as well as for survivors of critical illness, is changing and expanding. The purpose of this chapter is to introduce readers to the specialty of palliative care and its potential benefits for critically ill patients, and to present some of the issues related to the delivery of palliative care in surgical units.

Cognitive Behavioral Therapy for Informal Cancer Caregivers

2019 ◽  
pp. 149-163
Author(s):  
Jamie M. Jacobs ◽  
Lara Traeger ◽  
Emily A. Walsh ◽  
Joseph A. Greer
Keyword(s):  
Quality Of Life ◽  
Cognitive Behavioral Therapy ◽  
Behavioral Therapy ◽  
Outpatient Setting ◽  
Cognitive Behavioral ◽  
Healthcare Team ◽  
Loved One ◽  
Cancer Caregivers ◽  
And Coping

As cancer treatment shifts progressively to the outpatient setting, informal caregivers, including family and friends, play an increasingly central role in ensuring optimal ongoing care of these patients. Cancer caregivers may provide a range of emotional, instrumental, and informational support, including handling complex treatment schedules, managing side effects, juggling household chores and transportation, communicating with the healthcare team and friends and family, and coping with the uncertainty of their loved one’s prognosis. Cancer caregivers may become overwhelmed and burdened by these tasks, receiving minimal support and guidance related to managing distress and maintaining their own quality of life while caring for a loved one. Cognitive behavioral therapy is evidence- and skills-based therapy efficacious for patients with cancer in managing anxiety and depression and improving quality of life. This chapter reviews the application of and evidence for cognitive behavioral therapy for addressing psychosocial distress and burden in informal cancer caregivers.

scholarly journals Biopsychosocial and clinical characteristics in patients with resected breast and colon cancer at the beginning and end of adjuvant treatment

BMC Cancer ◽  
2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Teresa García-García ◽  
Alberto Carmona-Bayonas ◽  
Paula Jimenez-Fonseca ◽  
Carlos Jara ◽  
Carmen Beato ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Decision Making ◽  
Colon Cancer ◽  
Cancer Patients ◽  
Adjuvant Treatment ◽  
Perceived Social Support ◽  
Shared Decision ◽  
Breast Cancer Patients

Abstract Background The aim of this study was to analyze biopsychosocial factors affecting how patients cope with cancer and adjuvant treatment and to appraise psychological distress, coping, perceived social support, quality of life and SDM before and after adjuvant treatment in breast cancer patients compared to colon cancer patients. Methods NEOcoping is a national, multicenter, cross-sectional, prospective study. The sample comprised 266 patients with colon cancer and 231 with breast cancer. The instruments used were the Brief Symptom Inventory (BSI), Mini-Mental Adjustment to Cancer (Mini-MAC), Multidimensional Scale of Perceived Social Support (MSPSS), Shared Decision-Making Questionnaire-Patient (SDM-Q-9) and Physician’s (SDM-Q-Doc), and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ). Results Breast cancer patients reacted worse to the diagnosis of cancer with more symptoms of anxiety, depression, and somatization, and were less satisfied with their involvement than those with colon cancer (p = 0.003). Participants with colon cancer were older and had more physical symptoms and functional limitations at the beginning of adjuvant treatment, while there were scarcely any differences between the two groups at the end of adjuvancy, at which time both groups suffered greater psychological and physical effects and scored lower on coping strategies, except for anxious preoccupation. Conclusions Breast cancer patients need more information and involvement of the oncologist in shared decision-making, as well as and more medical and psychological support when beginning adjuvant treatment. Both breast and colon cancer patients may require additional psychological care at the end of adjuvancy.

P002 IBD PARTNERSHIPS: UNDERSTANDING PATIENTS VS. CLINICIANS PERSPECTIVES OF IBD TREATMENT OPTIONS TO IMPROVE SHARED DECISION-MAKING

2020 ◽  
Vol 26 (Supplement_1) ◽  
pp. S51-S51
Author(s):  
Sandra Zelinsky ◽  
Catherine Finlayson
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Focus Groups ◽  
Shared Decision Making ◽  
Healthcare Providers ◽  
Treatment Decisions ◽  
Research Approach ◽  
Shared Decision ◽  
Rural And Urban

Abstract Background The patient is the only constant in the care journey, the person who experiences both processes and the outcomes of care. There is an international shift towards including patients as equal partners in research. Co-producing research with Inflammatory Bowel Disease (IBD) patients to understand their values, needs and priorities when making treatment decisions will potentially improve shared decision-making between IBD patients and their Healthcare Providers (HCPs). To facilitate this process patients and HCPs must have a common understanding of expected medication benefits, risks and the potential impact on quality of life. The information available to facilitate this conversation must be aligned and reflect the priorities that IBD Patients and Healthcare Providers consider when making treatment decisions. Both parties can then share information and work towards an agreement to what treatment plan should be implemented. Aims To understand what matters most to IBD patients when making treatment decisions by conducting a qualitative patient-led peer to peer study which will inform the development of an IBD patient and HCP survey. Methods IBD patients (≥ 18 years of age) were recruited through the IBD clinic at the University of Calgary and via social media. Focus groups were held in three separate provinces (British Columbia, Alberta and Ontario) in both rural and urban locations. The focus groups were facilitated by a Patient Engagement Researcher to alleviate any potential power dynamics and to create a safe space for IBD patients to share their perspectives. A participatory action research approach was used to encourage co-production with participants throughout the focus groups. The focus groups were audio recorded. Flip charts and sticky notes were used for brainstorming and prioritization exercises. All audio and written data were transcribed. Thematic analysis was used to identify emerging themes and patient priorities. Results A total of 21 participants attended the focus groups from both rural and urban locations. Participant diversity ranged in ethnicity and age. Most of the participants were female (18 females and 3 males) of which 4 were biologic naïve and 17 were biologic exposed. The Top 5 IBD Patient Priorities when making treatment decisions are 1) Risks(more serious/long term) 2) Education(Support/Evidence Based Information/Resources) 3) Side Effects(short term/less serious) 4) Efficacy 5) Impact(Quality of Life/ Lifestyle/Logistics). Conclusions Co-producing research ‘with’ and ‘by’ IBD patients helped to generate priorities that matter most to patients when making treatment decisions. The patient priorities will help in the development of an IBD Patient and HCP survey. The results from the two surveys will be compared to understand patient vs. HCP perspectives.

Provision and Wellbeing: An Agenda for Public Resources Research

1982 ◽  
Vol 14 (3) ◽  
pp. 297-310 ◽  
Author(s):  
K Jones ◽  
A Kirby
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Social Policy ◽  
Empirical Work ◽  
Health Care Provision ◽  
Public Facility ◽  
Care Provision ◽  
Public Resources ◽  
A Chain

This paper begins by assessing the state of public facility location research, and follows Dear in suggesting that a new context for analysis is required. Such a context is outlined, placing public goods within a chain of provision that links social policy with the individual's quality of life. Parts of this argument are illustrated with recourse to preliminary empirical work undertaken in Reading on aspects of health-care provision.

Assessing distress in patients with gastrointestinal tumors during radiotherapy.

2016 ◽  
Vol 34 (4_suppl) ◽  
pp. 524-524
Author(s):  
Laeticia Hollant ◽  
Megan Paige Single ◽  
Katherine Gaines ◽  
Bridget Smart ◽  
Jacob Habboush ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Distress Thermometer ◽  
Gastrointestinal Tumors ◽  
Psychosocial Stressors ◽  
Medical Providers ◽  
Loved One ◽  
Patient Reported ◽  
Cancer Network ◽  
Physical Care

524 Background: Psychosocial distress during radiotherapy (RT) for gastrointestinal tumors is poorly characterized. Since 2012, patients receiving RT in our clinic have been prospectively screened for causes of distress. The results of our screening were reviewed in order to elucidate concerns of GI cancer patients and to delineate patterns within patient reported distress (PRD). Methods: Patients treated with RT at our institution receive a 30 question PRD survey that also includes a linear analog measure of overall distress at the start and during RT. The PRD survey asks patients to rate forms of distress on a scale of 1 to 5 (5 being the most distressed). The survey also asks patients to rate overall distress according to the National Comprehensive Cancer Network (NCCN) Distress Thermometer on a scale 0 to 10. The reported results were retrospectively reviewed in patients receiving definitive RT for GI cancers from 04/02/2012 to 08/05/2015. Results: PRD surveys were completed by 113 patients, 55 (48.7%) male and 58 (51.3%) female. Median age was 65 years (range 28 to 93). The most common tumor histology was adenocarcinoma, 67 (59.3%). 105 patients (93.0%) received chemotherapy and 66 (58.4%) underwent surgery. Overall, NCCN distress thermometer results ranged from 0 to 10, with a median of 4.3. The mean distress scores for the top five complaints ranged from 1.27 to 2.63. Top distresses were “How will I feel during treatment” (2.63), “Fatigue” (2.45), “Pain that affects daily functioning” (2.35), “Out of pocket medical costs” (2.31), and “Sleep difficulties” (2.31). The least concerning complaints were “Housing during treatment” (1.27), “A loved one relying on me for their physical care” (1.30), “Spirituality” (1.33),“Family communication about my illness”(1.37), and “Transportation” (1.38). Conclusions: Patients’ major concerns were aligned with daily quality of life, such as fatigue, pain and insomnia. Highest reported distress was linked with the process of RT and side effects associated with treatment. Medical expenses were also perceived as a burden. Medical providers should identify psychosocial stressors during RT in order to effectively communicate and provide resources to improve quality of life.

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