Caregiver Perspectives on the Benefits, Burdens, and Moral Distress of Participation in Cancer Clinical Trials.

Caregivers often face critical decisions, burdens, and perceived benefits related to a loved one participating in cancer clinical trial (CCTs). The purpose of this analysis was to better understand caregivers' perceptions on the benefits and burdens of participation in cancer clinical trials. Using a qualitative descriptive design, interviews with 20 caregivers of patient-participants from a larger parent study were conducted. Three major themes emerged. The benefits of research participation focused on enhancing the potential for saving a loved one's life, improving quality of life, and holding altruistic intentions. The burden of research participation emphasized a loved one's suffering as well as physical, emotional, logistical, and financial burden to caregivers. Caregiver moral distress highlighted distressing ethical encounters, such as making decisions on research participation and navigating suboptimal care. Understanding caregiver perceptions is an important step in designing future CCTs that minimize burdens and maximize patient and caregiver health and family-centered care.

Clinician distress in seriously ill patient care: A dimensional analysis.

BACKGROUND: Caring for patients with serious illness may severely strain clinicians causing distress and probable poor patient outcomes. Unfortunately, clinician distress and its impact historically has received little attention. RESEARCH PURPOSE: The purpose of this article was to investigate the nature of clinician distress. RESEARCH DESIGN: Qualitative inductive dimensional analysis. PARTICIPANTS AND RESEARCH CONTEXT: After review of 577 articles from health sciences databases, a total of 33 articles were eligible for analysis. ETHICAL CONSIDERATIONS: This study did not require ethical review and the authors adhered to appropriate academic standards in their analysis. FINDINGS: A narrative of clinician distress in the hospital clinician in the United States emerged from the analysis. This included clinicians' perceptions and sense of should or the feeling that something is awry in the clinical situation. The explanatory matrix consequence of clinician distress occurred under conditions including: the recognition of conflict, the recognition of emotion, or the recognition of a mismatch; followed by a process of an inability to feel and act according to one's values due to a precipitating event. DISCUSSION: This study adds three unique contributions to the concept of clinician distress by (1) including the emotional aspects of caring for seriously ill patients, (2) providing a new framework for understanding clinician distress within the clinician's own perceptions, and (3) looking at action outside of a purely moral lens by dimensionalizing data, thereby pulling apart what has been socially constructed. CONCLUSION: For clinicians, learning to recognize one's perceptions and emotional reactions is the first step in mitigating distress. There is a critical need to understand the full scope of clinician distress and its impact on the quality of patient-centered care in serious illness.

Rhetoric of research: a call for renaming the clinical research partnership.

OBJECTIVE: Research cannot advance without the voluntary participation of human participants. SUMMARY OF ARGUMENTS: Full participation of research participants is often restrained by the traditional research framework, which relegates them to a predefined participant role and allows them only quasi-scripted opportunities to contribute to research processes and outcomes. Terms commonly used to refer to research participants do not reflect their significant role or send a clear message about their value. The authors propose a shift from 'patient participant' to 'participant partner.' Recognition of the true partnership between the participant and the research team, from the consent process to the trial's end, will encourage and enable fuller participation. CONCLUSION: Changing the rhetoric of research in the labelling of research participants will require dialogue. 'Respect for persons' demands it, and the research process will be better for it.

Everyday Ethics or Deference to Expertise: Experiences of Pediatric Palliative Care Teams with Ethics Consultancy.

Background: Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Objective: Describe the extent to which PPC team members serve in pediatric health care ethics (PHCE) consultancy roles and to describe their experiences interacting with pediatric ethic consultant services. Design: Online survey distributed to members of the American Academy of Pediatrics and American Academy of Hospice and Palliative Care pediatric and ethics section and special interest groups in the United States. Results: Eighty-six responses were obtained (response rate 45%) from PPC teams in 70 different children's hospitals located in 34 states. Almost all (97%) reported a functional ethics consult service such that PPC is not expected to meet the ethics need of the institution. A person involved on the PPC team also performed ethics consults in half (49%) of the settings, predominantly the PPC physician. Most respondents who perceive PPC teams engage in ethics-relevant work as part of their everyday PPC work. Formal ethics training was lacking among PPC members involved in ethics consults with few ethics degrees (15%), certifications (6%), or fellowships (2%). Discord (67%), conflict (49%), limitations to treatment (48%), and distress (41%) were cited as the most frequent reasons for which PPC teams consult ethics. PPC respondents identified role clarity, coordinated engagement, timely presence, and open communication as strong PHCE consultant practices. Conclusions: PPC team members performing ethics consults may benefit from additional ethics education and training. Further research is warranted to delineate scope of ethics consultancy relevant to PPC and role clarity.

Advanced Practice Provider Model for Urgent Oncology Care.

Inherent to the cancer disease trajectory are heightened risks for a plethora of comorbid diagnoses. As the treatment landscape for oncology therapeutics continues to rapidly advance, patients are living longer and potentially experiencing more symptoms requiring rapid assessment. Prompt assessment and intervention for cancer or cancer treatment-related symptoms is imperative to achieve patient comfort and obtain the best overall patient outcomes. Traditionally, these patients were frequently referred to the emergency department (ED) when same-day clinic appointments were not obtainable. In order to decrease ED utilization and provide same-day urgent care for oncology patients, the Abramson Cancer Center established an advanced practice provider-led Oncology Evaluation Center where cancer patients are able to receive same-day assessment, symptom relief, and ultimately prevent unnecessary ED visits.

Blueprint for a Palliative Advanced Practice Registered Nurse Fellowship.

Opportunities for advanced practice registered nurses (APRNs) to train for specialty palliative care practice are insufficient to meet workforce needs. Graduate nursing programs in the United States do not have uniform or required curricula in palliative and end-of-life care of the seriously ill. In clinical practice, APRNs acquire palliative care skills by a mix of on-the-job experience, self-study, and continuing education. While physician colleagues can pursue post-residency training in one of 156 accredited hospice and palliative medicine fellowships, there are fewer than a dozen fellowships for APRNs, each training between one and three nurse fellows for specialty palliative care practice. This disparity slows the pipeline of palliative nursing experts and leaders, taxes employers with significant training duties, and results in an APRN workforce without uniform training. There are grass roots initiatives-often by non-nursing educators-to adapt existing physician and interprofessional fellowships for nurse learners, both in palliative care and other specialties. While these efforts help meet staffing needs and promote interprofessionalism, these programs are built upon medical curricula and competencies rather than grounding from a nursing framework. Nursing fellowship directors may not have the same administrative support, protected nonclinical time, funding, or access to nursing mentors and faculty afforded to their medical counterparts. This article provides a blueprint for clinician educators from nursing or non-nursing disciplines, who want to develop or refine training programs for APRNs that adhere to palliative nursing standards and offer a curriculum integrated with supervised practice and mentorship.

Experiences of Patients After Withdrawal From Cancer Clinical Trials.

Importance: Cancer clinical trials (CCTs) provide patients an opportunity to receive experimental drugs, tests, and/or procedures that can lead to remission. For some, a CCT may seem like their only option. Little is known about experiences of patient-participants who withdraw or are withdrawn from CCTs. Objective: To examine patient-participants' experiences during withdrawal from CCTs. Design, Setting, and Participants: This qualitative, descriptive study used a semistructured interview designed specifically for it, with open-ended and probing questions. The study took place at a National Cancer Institute-designated comprehensive cancer center affiliated with the University of Pennsylvania. The need for a sample of 20 interviewees was determined by code and meaning saturation (ie, no new themes revealed and identified themes fully elaborated). Interviews were transcribed verbatim and analyzed with a qualitative software program. Data coded with the software were refined into categories reflecting broad themes. A criterion-based sampling approach was used to select a subset of adult patients with cancer who were former CCT participants and who agreed on exit from those CCTs to a later interview about withdrawal experiences. They were contacted one by one by telephone from September 2015 through June 2019 until 20 agreed. Data analysis was completed in October 2020. Main Outcomes and Measures: Themes characterizing patient-participants' perceptions of their withdrawal experiences. Results: Respondents' mean (SD) age was 64.42 (8.49) years; 12 (63.2%) were men. Most respondents were White (18 respondents [94.7%]) and college educated (11 respondents [55.0%]). Cancer stage data were available for 17 participants, 11 of whom (64.7%) had stage IV cancer at CCT enrollment. Thirteen respondents reported withdrawal as a result of disease progression, and 5 withdrew because of adverse effects. Other reasons for withdrawal included acute illness and participant uncertainty about the reason. Analysis of interview data yielded 5 themes: posttrial prognostic awareness, goals of care discussions, emotional coping, burden of adverse effects, and professional trust and support. Subthemes included regrets or hindsight, urgency to start next treatment, and weighing benefits and burdens of treatment. Limited discussions about patient-participants' immediate posttrial care needs left many feeling that there was no clear path forward. Conclusions and Relevance: Patient-participants transitioning from a CCT described feeling intense symptoms and emotions and awareness that their life span was short and options seemed to be limited. Communication that includes attention to posttrial needs is needed throughout the CCT to help patient-participants navigate posttrial steps. Research should focus on components of responsible and ethical CCT transitions, including types and timing of discussions and who should begin these discussions with patient-participants and their families.

Opioids and Cancer Pain Management in the United States: Public Policy and Legal Challenges.

OBJECTIVE: To review current opioid guidelines, public policy, and legal challenges that can threaten optimal management of cancer pain. DATA SOURCES: National guidelines, professional web sites, journal articles, essays. CONCLUSION: Recent opioid legislation and increasing scrutiny from regulatory agencies have created multiple barriers for providers and patients to achieve pain control. These challenges include prescription limitations and practitioner fear of litigation, which can result in the under-prescribing or refusal to prescribe opioids. IMPLICATIONS FOR NURSING PRACTICE: To provide excellent care, nurses must understand current policies affecting delivery of pain care to oncology patients and serve as patient advocates in the evolving policy debates.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients with Hematologic Malignancies.

Hematologic malignancies differ in several important ways from solid organ cancers, and warrant a unique approach to palliative care (PC) integration. As PC has moved upstream from end-of-life care, PC clinicians are increasingly asked to see patients with hematologic malignancies. Unfortunately, many PC specialists have limited knowledge of these diseases, and have had few prior opportunities to participate in their care. This article, written by hematologic oncologists and PC specialists, seeks to educate PC teams about the unique features of hematologic malignancies, to inform effective integration of PC into the care of these patients, their caregivers, and treating hematologists.

Palliative Care Office Hours for Patients with Hematologic Malignancies: An Innovative Model for Symptom Management and Education.

BACKGROUND: Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. OBJECTIVES: To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. METHODS: A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. RESULTS: Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p < 0.001) with an increase in consults for goals of care. CONCLUSION: Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.

The global state of palliative care-progress and challenges in cancer care.

All persons have a right to palliative care during cancer treatment and at the end-of-life. The World Health Organization (WHO) defines palliative care as a medical specialty that addresses physical, psychological, social, legal, and spiritual domains of care by an interdisciplinary team of professional and lay health care providers. Widespread adoption of this universal definition will aid policy development and educational initiatives on a national level. The need for palliative care is expanding due to the aging of the world's population and the increase in the rate of cancer in both developed and developing countries. However, in one third of the world there is no access to palliative care for persons with serious or terminal illness. Palliative care improves symptoms, most frequently pain, and improves quality of life for patients and their families, especially in the terminal disease phase. Accessibility to palliative care services, adequately trained health care professionals, availability of essential medicines, and gaps in education vary greatly throughout the world. Pain management is an integral concept in the practice of palliative care; however, opioiphobia, insufficient supply of opioids, and regulatory restrictions contribute to undue suffering for millions. Ongoing advocacy efforts call for increased awareness, palliative care integration with cancer care, and public and professional education. Enacting necessary change will require the engagement of health ministries and the recognition of the unique needs and resources of each country. The aim of this review is to examine progress in palliative care development and explore some of the barriers influencing cancer care across the globe.