scholarly journals The ABCs of Renal Palliative Care: Tools for Decision-Making and Symptom Management in Kidney Disease (TH312)

2013 ◽  
Vol 45 (2) ◽  
pp. 339-340
Author(s):  
Jane Schell ◽  
Robert Arnold ◽  
Steven Weisbord ◽  
Alvin (Woody) Moss
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Kidney Disease ◽  
Symptom Management

scholarly journals An examination of the research priorities for a hospice service in New Zealand: A Delphi study

2015 ◽  
Vol 14 (3) ◽  
pp. 232-240 ◽  
Author(s):  
Kay de Vries ◽  
Jo Walton ◽  
Katherine Nelson ◽  
Rhondda Knox
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
New Zealand ◽  
Symptom Management ◽  
Care Service ◽  
Research Priorities ◽  
Palliative Care Service ◽  
Family Carers ◽  
Research Topics ◽  
Research Themes

AbstractObjectives:Palliative care research is relatively diverse and prioritizing research in this field is dependent on multiple factors such as complex ethical decisions in designing and conducting the research; access to participants who may be deemed “vulnerable” and an increasingly medically focused approach to care. The aim of this study was to inform organizational decision-making and policy development regarding future research priorities for a hospice service in New Zealand.Methods:A modified three-round Delphi technique was employed. Participants were drawn from one dedicated specialist palliative care service that delivers care in the community, day-care, hospice inpatient, aged residential care, and acute hospital palliative care service. A purposive sample included palliative care staff (n = 10, 18, 9, for rounds 1–3, respectively) volunteers (n = 10, 12, 11); and patients and family carers (n = 6, 8, for rounds 1 and 2). Patients and family carers were not involved in the third round.Results:At final ranking of six research themes encompassing 23 research topics were identified by staff and volunteers. These were: symptom management; aged care; education; community; patient and family; and bereavement support and young people. Patients and family carers agreed on four themes, made up of 10 research topics. These were: decision-making, bereavement and loss, symptom management; and recognition of need and response of service.Significance of results:The study generated a rich set of research themes and specific research topics. The perspectives of staff and volunteers are significantly different from those of patients and family members, in spite of the recognition by all concerned that palliative care services work within a philosophy of patient-centered care. Open discussion of ideas has the potential to engage both staff and patients and carers in quality improvement initiatives, and to reinforce the value of research for patient care.

scholarly journals Clinician views of patient decisional conflict when deciding between dialysis and conservative management: Qualitative findings from the PAlliative Care in chronic Kidney diSease (PACKS) study

2017 ◽  
Vol 31 (10) ◽  
pp. 921-931 ◽  
Author(s):  
Helen Noble ◽  
Kevin Brazil ◽  
Aine Burns ◽  
Sarah Hallahan ◽  
Charles Normand ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Decision Making ◽  
Palliative Care ◽  
United Kingdom ◽  
Kidney Disease ◽  
Conservative Management ◽  
Treatment Options ◽  
Decisional Conflict ◽  
The United Kingdom ◽  
The Impact

Background: Only a paucity of studies have addressed clinician perspectives on patient decisional conflict, in making complex decisions between dialysis and conservative management (renal supportive and palliative care). Aim: To explore clinician views on decisional conflict in patients with end-stage kidney disease. Design: Interpretive, qualitative study. Setting and participants: As part of the wider National Institute for Health Research, PAlliative Care in chronic Kidney diSease study, semi-structured interviews were conducted with clinicians (nephrologists n = 12; 7 female and clinical nurse specialists n = 15; 15 female) across 10 renal centres in the United Kingdom. Interviews took place between April 2015 and October 2016 and a thematic analysis of the interview data was undertaken. Results: Three major themes with associated subthemes were identified. The first, ‘Frequent changing of mind regarding treatment options’, revealed how patients frequently altered their treatment decisions, some refusing to make a decision until deterioration occurred. The second theme, ‘Obligatory beneficence’, included clinicians helping patients to make informed decisions where outcomes were uncertain. In weighing up risks and benefits, and the impact on patients, clinicians sometimes withheld information they thought might cause concern. Finally, ‘Intricacy of the decision’ uncovered clinicians’ views on the momentous and brave decision to be made. They also acknowledged the risks associated with this complex decision in giving prognostic information which might be inaccurate. Limitations: Relies on interpretative description which uncovers constructed truths and does not include interviews with patients. Conclusion: Findings identify decisional conflict in patient decision-making and a tension between the prerequisite for shared decision-making and current clinical practice. Clinicians also face conflict when discussing treatment options due to uncertainty in equipoise between treatments and how much information should be shared. The findings are likely to resonate across countries outside the United Kingdom.

Best Practices, Enduring Challenges, and Opportunities for VSED

2021 ◽  
pp. 126-130
Author(s):  
Timothy E. Quill ◽  
Paul T. Menzel ◽  
Thaddeus M. Pope ◽  
Judith K. Schwarz
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Best Practices ◽  
Advance Directives ◽  
Symptom Management ◽  
Early Phase ◽  
Terminal Illness ◽  
Care Providers ◽  
Decision Making Capacity ◽  
Challenges And Opportunities

VSED begins with excellent symptom management supported by experienced clinicians. VSED is largely patient controlled, but involvement of experienced palliative care providers and family is strongly recommended. Decision making capacity is frequently lost late in the process as death nears, so written advance directives to continue withholding food and fluids should be completed prior to initiating VSED to forestall any misunderstandings of the patient’s wishes. Challenges associated with VSED include its two week duration before death, the personal determination required, and the possibility of delirium in the latter stages that potentially compromises the commitment to forgo fluids. These challenges should be anticipated and planned for. The primary advantages of VSED include: 1) predictable two week duration from initiation to death; 2) alertness for the early phase, 3) no terminal illness requirement, 4) largely under the patient’s control, and 5) awareness of the possibility of VSED can provide comfort to those worried about unacceptable future suffering.

scholarly journals Digital Health Interventions in Palliative Care: A Systematic Meta-Review and Evidence Synthesis

2020 ◽  
Author(s):  
Anne Finucane ◽  
Hannah O'Donnell ◽  
Jean Lugton ◽  
Connie Swenson ◽  
Claudia Pagliari
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Systematic Reviews ◽  
Symptom Management ◽  
Digital Health ◽  
Evidence Synthesis ◽  
Information Provision ◽  
Health Interventions ◽  
Meta Review ◽  
Education Decision

Digital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic reviews presents a challenge for evidence synthesis. This rigorous meta-review applied a structured search of 10 databases from 2006 to 2020, revealing 21 relevant systematic reviews, encompassing 332 unique publications. Most reviews were moderate quality. Interventions delivered via videoconferencing (17%), electronic healthcare records (16%) and phone (13%) were most frequently described. DHIs were typically used in palliative care for education (20%), symptom management (15%), decision-making support (13%), information provision or management (13%), and communication (9%). Positive impacts were reported on education, decision-making, information-sharing, communication, and costs. Impacts on symptom management were either positive or showed no harmful effects. However often DHIs were described but not evaluated. Responsive pragmatic research designs are now needed to guide further evaluation, implementation and to inform future service innovation.

Palliative Care for Children with Advanced Cancer

2020 ◽  
pp. 83-89
Author(s):  
Michelle Koh ◽  
Finella Craig ◽  
Joanne Wolfe
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Symptom Management ◽  
Psychological Symptoms ◽  
Care Planning ◽  
Specific Symptom ◽  
Advance Care ◽  
Bereavement Care

This chapter on palliative care for children with advanced cancer addresses the challenges of decision making and the care of the child and family. It explores decision making with regards to ongoing treatment, advance-care planning, and the importance of establishing goals of care. The nature and management of common physical and psychological symptoms are examined, in particular pain and the use of opioids and neuropathic adjuvants. Cancer-directed therapies, specific symptom management, and steroids are discussed. The chapter also includes specific issues around the care of the child and family at the end of life, such as feeding, spiritual distress, and ongoing bereavement care. This chapter is aimed at professionals in the multidisciplinary team caring for children in this context.

Role of the Palliative Care Unit Pharmacist

1991 ◽  
Vol 7 (4) ◽  
pp. 35-36 ◽  
Author(s):  
Nina Hanif
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Symptom Management ◽  
Palliative Care Team ◽  
Care Team ◽  
Palliative Care Unit ◽  
Alternate Routes

As a member of the palliative care team, the pharmacist makes valuable contributions towards decision making regarding appropriate drug therapies. The most challenging aspect of being a palliative care pharmacist is to isolate the etiology of a symptom to facilitate optimum symptom management and suggest alternate routes and medications.

Extending emotion and decision-making beyond the laboratory: The promise of palliative care contexts.

Emotion ◽  
2016 ◽  
Vol 16 (5) ◽  
pp. 581-586 ◽  
Author(s):  
Rebecca A. Ferrer ◽  
Lynne Padgett ◽  
Erin M. Ellis
Keyword(s):  
Decision Making ◽  
Palliative Care

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 Nephrology and Palliative Care Collaboration in the Care of Patients With Advanced Kidney Disease: Results of a Clinician Survey

2021 ◽  
Author(s):  
Maureen Metzger ◽  
Jonathan Yoder ◽  
Kara Fitzgibbon ◽  
Leslie Blackhall ◽  
Emaad Abdel-Rahman
Keyword(s):  
Palliative Care ◽  
Kidney Disease
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