Bedside rationing in cancer care: Patient advocate perspective

2021 ◽  
pp. 147775092110704
Author(s):  
Ornella Gonzato
Keyword(s):  
Cultural Change ◽  
Cancer Care ◽  
Care Patient ◽  
Public Attention ◽  
Patient Advocate ◽  
Number Of Patients ◽  
Open Debate ◽  
Patient Advocates ◽  
Decision Making Processes ◽  
Healthcare Rationing

Rationing in healthcare remains very much a taboo topic. Before COVID-19, it rarely received public attention, even when it occurred in everyday practices, mainly in the form of implicit rationing, as it continues to do today. There are different definitions, types and levels of healthcare rationing, according to different perspectives. With the aim of contributing to a more coherent debate on such a highly emotional healthcare issue as rationing, here are provided a number of reflections from a patient advocate perspective which are specifically focused on bedside rationing, the most troublesome level, both for patients and clinicians, particularly in regard to cancer care. Oncology, with its numerous expensive therapies and increasing number of patients, is undeniably one of the main areas contributing to the increase in healthcare costs. However, the fixed budgets of today's publicly financed health systems cannot allow unlimited access to the potentially beneficial treatments to all patients. Bedside rationing constitutes the last phase of many decision-making processes occurring at different interrelated levels (macro-levels), both inside and outside healthcare systems, which implicitly and inevitably result in a bottleneck determined by the upstream decisions themselves. Shifting from implicit to explicit bedside rationing essentially means moving from a paternalistic to a citizen-before-patient approach; this implies, first of all, a cultural change. Practical bedside rationing is an ethically complex topic, but one that needs to be urgently addressed in a transparent and open debate. In this scenario, the oncological community – patients, patient advocates and clinicians – can and should play an important role.

scholarly journals Impact of COVID-19 pandemic on the oncologic care continuum: urgent need to restore patients care to pre-COVID-19 era

2021 ◽  
pp. 1-11
Author(s):  
Ernest Osei ◽  
Ruth Francis ◽  
Ayan Mohamed ◽  
Lyba Sheraz ◽  
Fariba Soltani-Mayvan
Keyword(s):  
Cancer Care ◽  
Healthcare Professionals ◽  
Negative Impact ◽  
System Level ◽  
Care Continuum ◽  
Cancer Services ◽  
Number Of Patients ◽  
Prevention Programmes ◽  
Screening And Prevention ◽  
The Impact

Abstract Background: Globally, cancer is the second leading cause of death, and it is estimated that over 18·1 million new cases are diagnosed annually. The COVID-19 pandemic has significantly impacted almost every aspect of the provision and management of cancer care worldwide. The time-critical nature of COVID-19 diagnosis and the large number of patients requiring hospitalisation necessitated the rerouting of already limited resources available for cancer services and programmes to the care of COVID-19 patients. Furthermore, the stringent social distancing, restricted in-hospital visits and lockdown measures instituted by various governments resulted in the disruption of the oncologic continuum including screening, diagnostic and prevention programmes, treatments and follow-up services as well as research and clinical trial programmes. Materials and Methods: We searched several databases from October 2020 to January 2021 for relevant studies published in English between 2020 and 2021 and reporting on the impact of COVID-19 on the cancer care continuum. This narrative review paper describes the impact of the COVID-19 pandemic on the cancer patient care continuum from screening and prevention to treatments and ongoing management of patients. Conclusions: The COVID-19 pandemic has profoundly impacted cancer care and the management of cancer services and patients. Nevertheless, the oncology healthcare communities worldwide have done phenomenal work with joint and collaborative efforts, utilising best available evidence-based guidelines to continue to give safe and effective treatments for cancer patients while maintaining the safety of patients, healthcare professionals and the general population. Nevertheless, several healthcare centres are now faced with significant challenges with the management of the backlog of screening, diagnosis and treatment cases. It is imperative that governments, leaders of healthcare centres and healthcare professionals take all necessary actions and policies focused on minimising further system-level delays to cancer screening, diagnosis, treatment initiation and clearing of all backlogs cases from the COVID-19 pandemic in order to mitigate the negative impact on cancer outcomes.

Cancer care coordination: building a platform for the development of care coordinator roles and ongoing evaluation

2015 ◽  
Vol 21 (2) ◽  
pp. 157 ◽  
Author(s):  
Louise Freijser ◽  
Lucio Naccarella ◽  
Rosemary McKenzie ◽  
Meinir Krishnasamy
Keyword(s):  
Cancer Care ◽  
Research Policy ◽  
Contextual Influences ◽  
Policy And Practice ◽  
Care Coordinator ◽  
Program Logic ◽  
Policy Makers ◽  
Patient Advocates ◽  
The Individual ◽  
Ongoing Evaluation

Continuity of care is integral to the quality and safety of care provided to people with cancer and their carers. Further evidence is required to examine the contribution Nurse Cancer Care Coordinator (NCCC) roles make in improving the continuity. The aim of the present study was to clarify the assumptions underpinning the NCCC roles and provide a basis for ongoing evaluation. The project comprised a literature review and a qualitative study to develop program logic. The participants who were purposively sampled included policy makers, practitioners, patient advocates, and researchers. Both the literature and participant reports found that NCCC roles are diverse and responsive to contextual influences to coordinate care at the individual (patient), organisational, and systems levels. The application of the program logic for the development of NCCC roles was explored. The conceptualisation of NCCC roles was also examined in relation to Boundary Spanning and Relational Coordination theory. Further research is required to examine how NCCCs contribute to improving equity, safety, quality and coordination of care. The project has implications for research, policy and practice, and makes explicit existing assumptions to provide a platform for further development and evaluation of these roles.

Hospice volunteer as patient advocate: A trait approach

2010 ◽  
Vol 8 (2) ◽  
pp. 159-167 ◽  
Author(s):  
Carol A. Savery ◽  
Nichole Egbert
Keyword(s):  
Locus Of Control ◽  
Patient Advocacy ◽  
Patient Rights ◽  
Patient Centered ◽  
Internal Locus ◽  
Internal Locus Of Control ◽  
Patient Advocate ◽  
Hospice Volunteers ◽  
Patient Advocates ◽  
Additional Support

AbstractObjective:The purpose of this study is to examine traits of hospice volunteers that facilitate their success in this informal caregiving role, with the larger goal of alleviating the family caregiver burden and providing additional support to the hospice patient. To achieve this goal, a new scale was developed to tap into how hospice volunteers view their patient advocacy role.Method:Participants were 136 trained hospice volunteers from the Midwest who had direct contact with hospice patients. Volunteers mailed anonymous surveys that included measures of argumentativeness, locus of control, attitudes toward patient advocacy, and key demographic items. A new scale was developed to measure patient advocacy by hospice volunteers called the Hospice Volunteer as Patient Advocate.Results:Submitting this scale to exploratory factor analysis, two factors emerged: duty as patient advocate and support of patient rights. After performing a multiple regression analysis, results showed that female volunteers who were high in internal locus of control were more likely to perceive that volunteers have a duty as patient advocates. Younger volunteers with more years of volunteer experience, higher levels of internal locus of control, and lower external locus of control were more likely to support patient rights.Significance of results:The findings of this study could be used to formalize hospice volunteers' role as patient advocates, thus better utilizing them as committed, caring communicators and improving patient-centered care at end-of-life.

Legislating for advocacy: The case of whistleblowing

2015 ◽  
Vol 24 (3) ◽  
pp. 305-312 ◽  
Author(s):  
Chanel L Watson ◽  
Tom O’Connor
Keyword(s):  
United Kingdom ◽  
Patient Advocate ◽  
The United Kingdom ◽  
Patient Advocates ◽  
The Subject

Background: The role of nurses as patient advocates is one which is well recognised, supported and the subject of a broad body of literature. One of the key impediments to the role of the nurse as patient advocate is the lack of support and legislative frameworks. Within a broad range of activities constituting advocacy, whistleblowing is currently the subject of much discussion in the light of the Mid Staffordshire inquiry in the United Kingdom (UK) and other instances of patient mistreatment. As a result steps to amend existing whistleblowing legislation where it exists or introduce it where it does not are underway. Objective: This paper traces the development of legislation for advocacy. Conclusion: The authors argue that while any legislation supporting advocacy is welcome, legislation on its own will not encourage or enable nurses to whistleblow.

Are Perioperative Nurses Really Patient Advocates?

2003 ◽  
Vol 13 (1) ◽  
pp. 24-28 ◽  
Author(s):  
Jane Farrell
Keyword(s):  
Perioperative Nurses ◽  
Patient Advocate ◽  
Patient Advocates

The debate regarding the nurse as patient advocate continues to evoke strong feelings. This article will explore the concept of advocacy, where the notion originated, the qualities needed to be a patient advocate and whether nurses in the perioperative environment do advocate for their patients.

Addressing Burnout in Oncology: Why Cancer Care Clinicians Are At Risk, What Individuals Can Do, and How Organizations Can Respond

2016 ◽  
pp. 271-279 ◽  
Author(s):  
Fay J. Hlubocky ◽  
Anthony L. Back ◽  
Tait D. Shanafelt
Keyword(s):  
Cancer Care ◽  
Quality Care ◽  
Action Planning ◽  
Well Being ◽  
Care Patient ◽  
Shared Responsibility ◽  
Direct Care ◽  
Organizational Level ◽  
Individual Level ◽  
The Impact

Despite their benevolent care of others, today, more than ever, the cancer care professional who experiences overwhelming feelings of exhaustion, cynicism, and inefficacy is in grave jeopardy of developing burnout. Clinicians are repeatedly physically and emotionally exposed to exceedingly long hours in direct care with seriously ill patients/families, limited autonomy over daily responsibilities, endless electronic documentation, and a shifting medical landscape. The physical and emotional well-being of the cancer care clinician is critical to the impact on quality care, patient satisfaction, and overall success of their organizations. The prevention of burnout as well as targeting established burnout need to be proactively addressed at the individual level and organizational level. In fact, confronting burnout and promoting wellness are the shared responsibility of both oncology clinicians and their organizations. From an individual perspective, oncology clinicians must be empowered to play a crucial role in enhancing their own wellness by identification of burnout symptoms in both themselves and their colleagues, learning resilience strategies (e.g., mindful self-compassion), and cultivating positive relationships with fellow clinician colleagues. At the organizational level, leadership must recognize the importance of oncology clinician well-being; engage leaders and physicians in collaborative action planning, improve overall practice environment, and provide institutional wellness resources to physicians. These effective individual and organizational interventions are crucial for the prevention and improvement of overall clinician wellness and must be widely and systematically integrated into oncology care.

Identification of Cancer Care and Protocol Characteristics Associated With Recruitment in Breast Cancer Clinical Trials

2008 ◽  
Vol 26 (27) ◽  
pp. 4458-4465 ◽  
Author(s):  
Julie Lemieux ◽  
Pamela J. Goodwin ◽  
Kathleen I. Pritchard ◽  
Karen A. Gelmon ◽  
Louise J. Bordeleau ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Cancer Care ◽  
Primary Objective ◽  
Cancer Clinical Trials ◽  
Cooperative Groups ◽  
Number Of Patients ◽  
Trial Protocols ◽  
Few Data

Purpose It is estimated that only 5% of patients with cancer participate in a clinical trial. Barriers to participation may relate to available protocols, physicians, and patients, but few data exist on barriers related to cancer care environments and protocol characteristics. Methods The primary objective was to identify characteristics of cancer care environments and clinical trial protocols associated with a low recruitment into breast cancer clinical trials. Secondary objectives were to determine yearly recruitment fraction onto clinical trials from 1997 to 2002 in Ontario, Canada, and to compare recruitment fraction among years. Questionnaires were sent to hospitals requesting characteristics of cancer care environments and to cooperative groups/pharmaceutical companies for information on protocols and the number of patients recruited per hospital/year. Poisson regression was used to estimate the recruitment fraction. Results Questionnaire completion rate varied between 69% and 100%. Recruitment fraction varied between 5.4% and 8.5% according to year. More than 30% of patients were diagnosed in hospitals with no available trials. In multivariate analysis, the following characteristics were associated with recruitment: use of placebo versus not (relative risk [RR] = 0.80; P = .05), nonmetastatic versus metastatic trial (RR = 2.80; P < .01), and for nonmetastatic trials, protocol allowing an interval of 12 weeks or longer versus less than 12 weeks (from diagnosis, surgery, or end of therapy) before enrollment (RR = 1.36; P < .01). Conclusion Allowable interval of 12 weeks or longer to randomly assign patients in clinical trials could help recruitment. In our study, absence of an available clinical trial represented the largest barrier to recruitment.

scholarly journals Using Quality Improvement Methods and Time-Driven Activity-Based Costing to Improve Value-Based Cancer Care Delivery at a Cancer Genetics Clinic

2016 ◽  
Vol 12 (3) ◽  
pp. e320-e331 ◽  
Author(s):  
Ryan Y.C. Tan ◽  
Marie Met-Domestici ◽  
Ke Zhou ◽  
Alexis B. Guzman ◽  
Soon Thye Lim ◽  
...  
Keyword(s):  
Quality Improvement ◽  
Cancer Care ◽  
Cancer Genetics ◽  
Care Delivery ◽  
Genetic Counselor ◽  
Activity Based Costing ◽  
Improvement Project ◽  
Personnel Costs ◽  
Number Of Patients ◽  
The Impact

Purpose: To meet increasing demand for cancer genetic testing and improve value-based cancer care delivery, National Cancer Centre Singapore restructured the Cancer Genetics Service in 2014. Care delivery processes were redesigned. We sought to improve access by increasing the clinic capacity of the Cancer Genetics Service by 100% within 1 year without increasing direct personnel costs. Methods: Process mapping and plan-do-study-act (PDSA) cycles were used in a quality improvement project for the Cancer Genetics Service clinic. The impact of interventions was evaluated by tracking the weekly number of patient consultations and access times for appointments between April 2014 and May 2015. The cost impact of implemented process changes was calculated using the time-driven activity-based costing method. Results: Our study completed two PDSA cycles. An important outcome was achieved after the first cycle: The inclusion of a genetic counselor increased clinic capacity by 350%. The number of patients seen per week increased from two in April 2014 (range, zero to four patients) to seven in November 2014 (range, four to 10 patients). Our second PDSA cycle showed that manual preappointment reminder calls reduced the variation in the nonattendance rate and contributed to a further increase in patients seen per week to 10 in May 2015 (range, seven to 13 patients). There was a concomitant decrease in costs of the patient care cycle by 18% after both PDSA cycles. Conclusion: This study shows how quality improvement methods can be combined with time-driven activity-based costing to increase value. In this paper, we demonstrate how we improved access while reducing costs of care delivery.

scholarly journals Cancer Patient Management during COVID-19 Pandemic: An Audit of a Single-Surgeon Unit in a COVID-Hotspot

2021 ◽  
Vol 10 (01) ◽  
pp. 39-41
Author(s):  
Laleh Busheri ◽  
Smeeta Nare ◽  
Rituja Banale ◽  
Ashwini Bapat ◽  
Moushumi Nagarkar ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Cancer Care ◽  
Patient Management ◽  
Clinic Visit ◽  
Breast Cancer Treatment ◽  
Phone Call ◽  
Guiding Principle ◽  
Number Of Patients ◽  
Risk Of Exposure ◽  
Made In

AbstractThe report evaluates the effect of coronavirus disease (COVID-19) pandemic on breast cancer treatment and management at a single-surgeon cancer care unit in one of the hotspots of COVID-19 in India. In response to the pandemic, the adjustments were made in the clinical practice to accommodate social distancing. Patient consultations were done over phone call or in-clinic visit with prior appointment to reduce the risk of exposure to COVID-19. Total number of patients that were treated at the clinic and the essential surgeries performed during the pandemic phases are summarized in the report. The methodology adopted here for care and management of the cancer patients can serve as a guiding principle for cancer care units in the country.

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