Enhancing Informed Consent for Physician Aid in Dying: Potential Role of Handout on Possible Benefits of Palliative Care

In the United States, physician aid in dying (PAD) is now legal in several states. However, neither a requirement for a palliative care (PC) consultation nor a defined education in PC exists for physicians participating in PAD or patients requesting assistance. Patients with advanced chronic and serious illness often experience complex physical, psychosocial, and spiritual distress. PC focuses on relieving this distress and improving patient quality of life through early identification and intervention in all domains of suffering, including physical, psychological, social, and spiritual. Ideally, we would recommend a PC consult, but unfortunately, PC is not readily available or offered at this time to all those who might benefit from it. We present a case for providing an educational handout to patients who inquire about PAD. This handout explains the potential benefits of PC as an additional procedural safeguard to existing regulations. Such information would help to ensure the integrity of the informed consent process, enhance shared decision making, and improve patient comprehension of the options.

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Palliative Care

Advances in Medical Technologies and Clinical Practice - Modern Concepts and Practices in Cardiothoracic Critical Care ◽

10.4018/978-1-4666-8603-8.ch005 ◽

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.

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Ethics and the law involving the elderly

10.1093/med/9780198735571.003.0015 ◽

2017 ◽

Author(s):

Chris Dodds ◽

Chandra M. Kumar ◽

Frédérique Servin

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Informed Consent ◽

The Elderly ◽

Outcome Data ◽

Ethical Principles ◽

Assisted Death ◽

The Uk

The role of ethics in the care of the elderly is discussed, and some of the aspects of importance to anaesthesia are reviewed. Ethical principles are commonly viewed as either consequential, where the risk/benefit balance between necessary harm (surgery) provides improved quality of life, or deontological, where it is simply the action that is judged and not the outcome. The lack of individualized outcome data is identified as a major issue for the consequential process. Consent for surgery (and anaesthesia) is described in the context of the UK, but it is applicable worldwide. The validity of informed consent is reviewed against the criteria of competence, lack of duress, and appropriately provided information. The capacity to give consent and the use of legal alternatives such as health attorneys is detailed. Finally, the debate on excellent palliative care rather than assisted death is reviewed.

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Disparities among GU cancer patients referred to palliative care.

Journal of Clinical Oncology ◽

10.1200/jco.2020.39.28_suppl.114 ◽

2021 ◽

Vol 39 (28_suppl) ◽

pp. 114-114

Author(s):

Saad Omar Atiq ◽

James Helzberg ◽

Nathan Hirshman ◽

Zainab Atiq ◽

Daniel J. George ◽

...

Keyword(s):

Quality Of Life ◽

Prostate Cancer ◽

Palliative Care ◽

Cancer Patients ◽

The United States ◽

Quality Data ◽

Black Patients ◽

Quality Of Life Scale

114 Background: The role of palliative care in genitourinary (GU) malignancies has been understudied. Despite representing nearly 25% of new cancer diagnoses, with over 350,000 new cases diagnosed each year, few GU patients have been included in palliative care trials under the theory that symptoms are less severe for GU patients than other solid tumors. Early involvement of palliative care services improves the patient care experience, decreases healthcare utilization, is associated with survival benefit, and results in improved quality of life and mood. To further elucidate the role of palliative care in oncology, we must study its utility in subsets of malignancy like GU cancers, as needs for patients may differ by malignancy type. Methods: A retrospective cross-sectional analysis of initial outpatient palliative care visits was performed using data from the Quality Data Collection Tool for Palliative Care (QDACT-PC) database from 2014-2020. QDACT-PC is a web-based, point-of-care registry used by physicians across the United States to track quality metrics associated with patient consultations. Data was collected and analyzed from patients' initial visits including pain scale, dyspnea scale, feeling of well-being (Quality of Life scale), fatigue scale, constipation scale, palliative performance status (PPS), and preference for resuscitation status. Scales for these variables were 0-10, with the exception of a scale of 0-100% for PPS. Patients less than 18 and greater than 90 years old were excluded. Chi-squared and Student’s t-tests were used to compare categorical and continuous variables, respectively. Results: 824 GU oncology patients (358 prostate cancer patients, 251 bladder cancer patients, 215 renal cancer patients) were compared against all patients with non-GU cancers (7807 patients). Notably, non-GU patients reported higher rates of fatigue (4.50 vs. 4.13, p = 0.0013) and dyspnea (1.63 vs. 1.11, p < 0.0001) than GU patients. GU malignancies had non-significant higher reported pain (3.73 vs. 3.60, p = 0.3109) and constipation (1.96 vs. 1.83, p = 0.2319) and lower PPS (4.95 vs. 4.96, p = 0.8555) and QOL (4.55 vs. 4.73, p = 0.0962). Preference for resuscitation at the time of referral was similar between the two groups (p = 0.6339). Only 16.5% of prostate cancer patients referred to palliative care in this database were black, while black patients are often estimated to represent 30% of new prostate cancer diagnoses each year. Conclusions: GU patients represent 9.54% of cancer patients seen by palliative care while the incidence is nearly 25%. Traditionally, GU patients were underrepresented in palliative care trials under the notion of less severe symptoms; however, this study demonstrates that GU patients have as severe symptoms as non-GU patients, highlighting a disparity in referral to palliative care. Furthermore, the lack of representation of black patients suggests potential inequity and warrants further investigation.

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Snapshot of an acute palliative care unit in a tertiary cancer hospital

Palliative & Supportive Care ◽

10.1017/s1478951513000722 ◽

2013 ◽

Vol 12 (4) ◽

pp. 331-337 ◽

Cited By ~ 2

Author(s):

Akhila Reddy ◽

Marieberta Vidal ◽

Maxine de la Cruz ◽

Sriram Yennurajalingam ◽

Eduardo Bruera

Keyword(s):

Palliative Care ◽

The United States ◽

Palliative Care Unit ◽

Psychosocial Issues ◽

Special Report ◽

Working Together ◽

Consultation Services ◽

Specialized Unit

AbstractMost palliative care (PC) programs in the United States provide consultation services that assist the primary medical team with issues ranging from controlling patients' symptoms to initiating end-of-life discussions. This approach may be sufficient to address many patients' needs. However, for certain patients with complex medical and psychosocial issues, a better alternative is a more streamlined approach that can be provided in an acute palliative care unit (APCU), where the PC staff assumes the role of the primary team. An APCU is a specialized unit that delivers highly sophisticated care with professionals from various disciplines working together to improve the quality of life of patients and their families. However, descriptions of the process of delivering PC in the APCU are limited. In this special report, we portray a single day with a series of patients whose care was managed at our APCU to illustrate the unique components of an APCU that allow holistic care for patients with multiple complex medical and psychosocial issues.

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Dialysis withdrawal and palliative care

10.1093/med/9780199592548.003.0261 ◽

2015 ◽

Author(s):

Arkadiy Pinkhasov ◽

Michael J. Germain ◽

Lewis M. Cohen

Keyword(s):

Palliative Care ◽

The United States ◽

Medical Decisions ◽

Dialysis Treatment ◽

Quality Of Dying ◽

Prediction Of Survival ◽

Renal Patient ◽

Dialysis Withdrawal

This chapter discusses why dialysis withdrawal is so common in the United States, when dialysis withdrawal and withholding is appropriate, and the role of palliative care in the renal patient. It discusses guidelines that were created to aid in dialysis withdrawal, dialysis initiation, and prognostic calculation. Factors contributing to the phenomenon of dialysis discontinuation include variability in the criteria for initiation of renal replacement therapy, increasing numbers of incident and prevalent geriatric patients, new emphasis on autonomy and quality of life, the development of improved prognostic instruments for prediction of survival, growing acceptance of medical decisions that accelerate dying, and a clearer appreciation of the quality of dying that ensues following the cessation of dialysis. There continues to be a need for further integration of palliative medicine in the clinical management of patients with chronic kidney disease, especially since hospice services are often unavailable unless a decision is made to stop dialysis treatment. The importance of communication between staff and patients and the documentation of the plan of care is critical.

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Palliative Care

Oncology ◽

10.4018/978-1-5225-0549-5.ch001 ◽

2017 ◽

pp. 1-19

Author(s):

May Hua

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Intensive Care ◽

Critical Illness ◽

Serious Illness ◽

Surgical Units ◽

Potential Benefits

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Biopsychosocial Patterning of Multimorbidity and Its Consequences

The Oxford Handbook of Integrative Health Science ◽

10.1093/oxfordhb/9780190676384.013.14 ◽

2018 ◽

pp. 220-236

Author(s):

Elliot Friedman ◽

Beth LeBreton ◽

Lindsay Fuzzell ◽

Elizabeth Wehrpsann

Keyword(s):

Quality Of Life ◽

Older Adults ◽

Functional Outcomes ◽

The United States ◽

Chronic Medical Conditions ◽

Quality Of Life Research ◽

Increased Risk ◽

Over Time

By many estimates the majority of adults over age 65 have two or more chronic medical conditions (multimorbidity) and are consequently at increased risk of adverse functional outcomes. Nonetheless, many older adults with multimorbidity are able to maintain high levels of function and retain good quality of life. Research presented here is designed to understand the influences that help ensure better functional outcomes in these older adults. This chapter presents findings that draw on data from the Midlife in the United States study. The independent and interactive contributions of diverse factors to multimorbidity and changes in multimorbidity over time are reviewed. The degree that multimorbidity increases risk of cognitive impairment and disability is examined. The role of inflammation as a mediator is considered. Multimorbidity is increasingly the norm for older adults, so better understanding of factors contributing to variability in multimorbidity-related outcomes can lead to improved quality of life.

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Interventions to Improve Patient Comprehension in Informed Consent for Medical and Surgical Procedures: An Updated Systematic Review

Medical Decision Making ◽

10.1177/0272989x19896348 ◽

2020 ◽

Vol 40 (2) ◽

pp. 119-143 ◽

Cited By ~ 6

Author(s):

Johanna Glaser ◽

Sarah Nouri ◽

Alicia Fernandez ◽

Rebecca L. Sudore ◽

Dean Schillinger ◽

...

Keyword(s):

Informed Consent ◽

Data Extraction ◽

Meta Analysis ◽

Size Control ◽

Group Processes ◽

Future Research ◽

Control Group ◽

Test Feedback ◽

Patient Comprehension ◽

Improve Patient

Background. Patient comprehension is fundamental to valid informed consent. Current practices often result in inadequate patient comprehension. Purpose. An updated review to evaluate the characteristics and outcomes of interventions to improve patient comprehension in clinical informed consent. Data Sources. Systematic searches of MEDLINE and EMBASE (2008–2018). Study Selection. We included randomized and nonrandomized controlled trials evaluating interventions to improve patient comprehension in clinical informed consent. Data Extraction. Reviewers independently abstracted data using a standardized form, comparing all results and resolving disagreements by consensus. Data Synthesis. Fifty-two studies of 60 interventions met inclusion criteria. Compared with standard informed consent, a statistically significant improvement in patient comprehension was seen with 43% (6/14) of written interventions, 56% (15/27) of audiovisual interventions, 67% (2/3) of multicomponent interventions, 85% (11/13) of interactive digital interventions, and 100% (3/3) of verbal discussion with test/feedback or teach-back interventions. Eighty-five percent of studies (44/52) evaluated patients’ understanding of risks, 69% (41/52) general knowledge about the procedure, 35% (18/52) understanding of benefits, and 31% (16/52) understanding of alternatives. Participants’ education level was reported heterogeneously, and only 8% (4/52) of studies examined effects according to health literacy. Most studies (79%, 41/52) did not specify participants’ race/ethnicity. Limitations. Variation in interventions and outcome measures precluded conduct of a meta-analysis or calculation of mean effect size. Control group processes were variable and inconsistently characterized. Nearly half of studies (44%, 23/52) had a high risk of bias for the patient comprehension outcome. Conclusions. Interventions to improve patient comprehension in informed consent are heterogeneous. Interactive interventions, particularly with test/feedback or teach-back components, appear superior. Future research should emphasize all key elements of informed consent and explore effects among vulnerable populations.

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Leadless Left Ventricular Endocardial Pacing and Left Bundle Branch Area Pacing for Cardiac Resynchronisation Therapy

Arrhythmia & Electrophysiology Review ◽

10.15420/aer.2020.46 ◽

2021 ◽

Vol 10 (1) ◽

pp. 45-50

Author(s):

Baldeep S Sidhu ◽

Justin Gould ◽

Mark K Elliott ◽

Vishal Mehta ◽

Steven Niederer ◽

...

Keyword(s):

Cardiac Resynchronisation Therapy ◽

Left Ventricular ◽

Mortality And Morbidity ◽

Cardiac Resynchronisation ◽

Resynchronisation Therapy ◽

Potential Benefits ◽

Endocardial Pacing ◽

Procedural Outcomes ◽

Improve Patient

Cardiac resynchronisation therapy is an important intervention to reduce mortality and morbidity, but even in carefully selected patients approximately 30% fail to improve. This has led to alternative pacing approaches to improve patient outcomes. Left ventricular (LV) endocardial pacing allows pacing at site-specific locations that enable the operator to avoid myocardial scar and target areas of latest activation. Left bundle branch area pacing (LBBAP) provides a more physiological activation pattern and may allow effective cardiac resynchronisation. This article discusses LV endocardial pacing in detail, including the indications, techniques and outcomes. It discusses LBBAP, its potential benefits over His bundle pacing and procedural outcomes. Finally, it concludes with the future role of endocardial pacing and LBBAP in heart failure patients.

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The Value of Citizen Science in Increasing Our Knowledge of Under-Sampled Biodiversity: An Overview of Public Documentation of Auchenorrhyncha and the Hoppers of North Carolina

Frontiers in Environmental Science ◽

10.3389/fenvs.2021.710396 ◽

2021 ◽

Vol 9 ◽

Author(s):

Kyle D. Kittelberger ◽

Solomon V. Hendrix ◽

Çağan Hakkı Şekercioğlu

Keyword(s):

North Carolina ◽

Citizen Science ◽

Spatial Scales ◽

The United States ◽

Undescribed Species ◽

The Past ◽

Global Biodiversity ◽

Temporal And Spatial

Due to the increasing popularity of websites specializing in nature documentation, there has been a surge in the number of people enthusiastic about observing and documenting nature over the past 2 decades. These citizen scientists are recording biodiversity on unprecedented temporal and spatial scales, rendering data of tremendous value to the scientific community. In this study, we investigate the role of citizen science in increasing knowledge of global biodiversity through the examination of notable contributions to the understanding of the insect suborder Auchenorrhyncha, also known as true hoppers, in North America. We have compiled a comprehensive summary of citizen science contributions—published and unpublished—to the understanding of hopper diversity, finding over fifty previously unpublished country and state records as well as dozens of undescribed and potentially undescribed species. We compare citizen science contributions to those published in the literature as well as specimen records in collections in the United States and Canada, illuminating the fact that the copious data afforded by citizen science contributions are underutilized. We also introduce the website Hoppers of North Carolina, a revolutionary new benchmark for tracking hopper diversity, disseminating knowledge from the literature, and incorporating citizen science. Finally, we provide a series of recommendations for both the entomological community and citizen science platforms on how best to approach, utilize, and increase the quality of sightings from the general public.

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