scholarly journals Patients Receiving Palliative Care and Their Families' Experiences of Participating in a “Patient-Centered Family Meeting”: A Qualitative Substudy of the Valuing Opinions, Individual Communication, and Experience Feasibility Trial

2021 ◽  
Vol 2 (1) ◽  
pp. 305-315
Author(s):  
Philippa J. Cahill ◽  
Elizabeth A. Lobb ◽  
Christine R. Sanderson ◽  
Jane L. Phillips
Keyword(s):  
Palliative Care ◽  
Feasibility Trial ◽  
Patient Centered ◽  
Family Meeting

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
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Critically Ill ◽  
Care Service ◽  
Clinical Care ◽  
Patient Centered Care ◽  
Practical Application ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Centered Care

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.

scholarly journals Advantages and challenges in using telehealth for home-based palliative care: A systematic mixed studies review protocol (Preprint)

2020 ◽  
Author(s):  
Simen A Steindal ◽  
Andréa Aparecida Goncalves Nes ◽  
Tove E. Godskesen ◽  
Susanne Lind ◽  
Alfhild Dhle ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Delivery ◽  
Patient Centered ◽  
Care Services ◽  
Home Based ◽  
Mixed Studies Review ◽  
Palliative Care Services ◽  
Meta Analyses ◽  
Systematic Mixed Studies Review ◽  
At Home

BACKGROUND Due to the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth for home-based palliative care. OBJECTIVE The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients’ use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients. METHODS This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data and assess methodological quality. The data will then be analyzed using thematic synthesis. RESULTS We described the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021. CONCLUSIONS Following the ethos of patient-centered palliative care, this systematic mixed studies review could contribute recommendations for practice and policy enabling the development of telehealth applications and services that align with patients’ preferences and needs when using telehealth applications and services at home.

scholarly journals Healing at the End of Life: The Voice of the Patient

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lived Experience ◽  
End Of Life ◽  
Life Story ◽  
Patient Centered ◽  
Whole Person ◽  
Centered Care ◽  
The Impact

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

Patient-Centered Palliative Care for Patients With Advanced Lung Cancer

2022 ◽  
Author(s):  
Jennifer S. Temel ◽  
Laura A. Petrillo ◽  
Joseph A. Greer
Keyword(s):  
Lung Cancer ◽  
Palliative Care ◽  
Checkpoint Inhibitors ◽  
Care Delivery ◽  
Cancer Therapeutics ◽  
Evidence Base ◽  
Advanced Lung Cancer ◽  
Care Needs ◽  
Patient Centered ◽  
Patient Reported

The evidence base demonstrating the benefits of an early focus on palliative care for patients with serious cancers, including advanced lung cancer, is substantial. Early involvement of specialty-trained palliative care clinicians in the care of patients with advanced lung cancer improves patient-reported outcomes, such as quality of life, and health care delivery, including hospice utilization. Since the time that many of these palliative care trials were conducted, the paradigm of cancer care for many cancers, including lung cancer, has changed dramatically. The majority of patients with advanced lung cancer are now treated with immune checkpoint inhibitors or targeted therapies, both of which have had a significant impact on patient's experience and outcomes. With this changing landscape of lung cancer therapeutics, patients are facing new and different challenges, including dealing with novel side effect profiles and coping with greater uncertainty regarding their prognosis. Patients who are living longer with their advanced cancer also struggle with how to address survivorship issues, such as sexual health and exercise, and decision making about end-of-life care. Although palliative care clinicians remain well-suited to address these care needs, they may need to learn new skills to support patients treated with novel therapies. Additionally, as the experience of patients with advanced lung cancer is becoming more varied and individualized, palliative care research interventions and clinical programs should also be delivered in a patient-centered manner to best meet patient's needs and improve their outcomes. Tailored and technology-based palliative care interventions are promising strategies for delivering patient-centered palliative care.

Palliative Care in the Perinatal Setting

2019 ◽  
pp. 749-757
Author(s):  
Cheryl Ann Thaxton ◽  
Diana Jacobson ◽  
Heather Murphy ◽  
Tracey Whitley
Keyword(s):  
Palliative Care ◽  
Neonatal Intensive Care ◽  
Psychological Symptom ◽  
Culturally Competent ◽  
Maternal Complications ◽  
Patient Centered ◽  
Care Services ◽  
Nursing Communication ◽  
The Family ◽  
Palliative Care Services

The nurse is an essential interdisciplinary partner in the delivery of family- and patient-centered palliative care for families faced with perinatal or newborn loss in the labor and delivery (L&D) unit and in the neonatal intensive care unit (NICU). Early identification and referral of the family to perinatal and neonatal palliative care services is paramount. Improving nursing communication with the family, advocating for the family, and providing supportive nursing care, which includes physical and psychological symptom management, are emphasized. The L&D unit is an area in which patients can experience both joy and loss; it is imperative that L&D nurses receive education about palliative care in the event of maternal complications and/or congenital anomalies that lead to the death of a newborn. Principles of essential individualized, compassionate, and culturally competent palliative care interventions are reviewed using patient and family exemplars.

scholarly journals Goals-of-care decision aid for critically ill patients with TBI

Neurology ◽  
2020 ◽  
Vol 95 (2) ◽  
pp. e179-e193
Author(s):  
Susanne Muehlschlegel ◽  
David Y. Hwang ◽  
Julie Flahive ◽  
Thomas Quinn ◽  
Christopher Lee ◽  
...  
Keyword(s):  
Critically Ill ◽  
Decision Aid ◽  
Decision Aids ◽  
Retention Rates ◽  
Feasibility Trial ◽  
Open Label ◽  
Family Meeting ◽  
Goals Of Care ◽  
System Usability Scale ◽  
Care Decision

ObjectiveTo develop and demonstrate early feasibility of a goals-of-care decision aid for surrogates of patients who are critically ill with traumatic brain injury (ciTBI) that meets accepted international decision aid guidelines.MethodsWe developed the decision aid in 4 stages: (1) qualitative study of goals-of-care communication and decision needs of 36 stakeholders of ciTBI (surrogates and physicians), which informed (2) development of paper-based decision aid with iterative revisions after feedback from 52 stakeholders; (3) acceptability and usability testing in 18 neurologic intensive care unit (neuroICU) family members recruited from 2 neuroICU waiting rooms using validated scales; and (4) open-label, randomized controlled feasibility trial in surrogates of ciTBI. We performed an interim analysis of 16 surrogates of 12 consecutive patients who are ciTBI to confirm early feasibility of the study protocol and report recruitment, participation, and retention rates to date.ResultsThe resultant goals-of-care decision aid achieved excellent usability (median System Usability Scale 87.5 [possible range 0–100]) and acceptability (97% graded the tool's content as “good” or “excellent”). Early feasibility of the decision aid and the feasibility trial protocol was demonstrated by high rates of recruitment (73% consented), participation (100%), and retention (100% both after the goals-of-care clinician–family meeting and at 3 months) and complete data for the measurements of all secondary decision-related and behavioral outcomes to date.ConclusionsOur systematic development process resulted in a novel goals-of-care decision aid for surrogates of patients who are ciTBI with excellent usability, acceptability, and early feasibility in the neuroICU environment, and meets international decision aid standards. This methodology may be a development model for other decision aids in neurology to promote shared decision-making.

scholarly journals Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND): Study protocol

2017 ◽  
Vol 3 (1) ◽  
pp. 91-97 ◽  
Author(s):  
Marie-Eve Carrier ◽  
Linda Kwakkenbos ◽  
Isabelle Boutron ◽  
Joep Welling ◽  
Maureen Sauve ◽  
...  
Keyword(s):  
Exercise Intervention ◽  
Controlled Trial ◽  
Hand Function ◽  
Exercise Program ◽  
Full Scale ◽  
Feasibility Trial ◽  
Trial Participant ◽  
Trial Methodology ◽  
Patient Centered ◽  
Scleroderma Patient

Background: Significant functional impairment of the hands is nearly universal in systemic sclerosis (SSc, scleroderma). Hand exercises may improve hand function, but developing, testing and disseminating rehabilitation interventions in SSc is challenging. The Scleroderma Patient-centered Intervention Network (SPIN) was established to address this issue and has developed an online hand exercise program to improve hand function for SSc patients (SPIN-HAND). The aim of the proposed feasibility trial is to evaluate the feasibility of conducting a full-scale randomized controlled trial (RCT) of the SPIN-HAND intervention. Design and methods: The SPIN-HAND feasibility trial will be conducted via the SPIN Cohort. The SPIN Cohort was developed as a framework for embedded pragmatic trials using the cohort multiple RCT design. In total, 40 English-speaking SPIN Cohort participants with at least mild hand function limitations (Cochin Hand Function Scale ≥3) and an indicated interest in using an online hand-exercise intervention will be randomized with a 1:1 ratio to be offered to use the SPIN-HAND program or usual care for 3 months. The primary aim is to evaluate the trial implementation processes, required resources and management, scientific aspects, and participant acceptability and usage of the SPIN-HAND program. Discussion: The SPIN-HAND exercise program is a self-help tool that may improve hand function in patients with SSc. The SPIN-HAND feasibility trial will ensure that trial methodology is robust, feasible, and consistent with trial participant expectations. The results will guide adjustments that need to be implemented before undertaking a full-scale RCT of the SPIN-HAND program. Trial registration: ClinicalTrials.gov Identifier: NCT03092024.

The Fourth Domain of Palliative Care

2018 ◽  
Author(s):  
E. Alessandra Strada
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Psychosocial Interventions ◽  
Social Needs ◽  
Family Meeting ◽  
Management Of Complications ◽  
Palliative Care Setting ◽  
The Family ◽  
The Many ◽  
Clinical Case Scenarios

This chapter proposes palliative psychology competencies in the fourth domain of palliative care, which addresses the social needs of the patient and the family. The unit of care in palliative care is represented by the patient and the family; thus, this chapter highlights the unique needs of family caregivers. The many challenges of caregiving are described by reviewing the literature and using clinical case scenarios. The risk factors and protective factors in caregiving are discussed and incorporated in assessment templates. Psychological and psychosocial interventions that can effectively support family caregivers are discussed. The function, structure, and execution of a family meeting in the palliative care setting is described. This chapter also describes bereavement support for family caregivers and the management of complications of bereavement.

scholarly journals Evaluation of the Quality of Dying and Death Questionnaire in Kenya

2019 ◽  
pp. 1-16
Author(s):  
Kenneth Mah ◽  
Richard A. Powell ◽  
Carmine Malfitano ◽  
Nancy Gikaara ◽  
Lesley Chalklin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Assessment Tools ◽  
Treatment Preferences ◽  
Culturally Appropriate ◽  
Patient Centered ◽  
P Values ◽  
Quality Of Dying ◽  
Cancer Sample

PURPOSE A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample. METHODS Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings. RESULTS Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death ( P values ≤ .001) but better on five concerns, including interpersonal and religious/spiritual concerns ( P values ≤ .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns ( P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings. CONCLUSION The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.

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