Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents

2020 ◽  
Vol 37 (12) ◽  
pp. 1009-1015
Author(s):  
Laura K. Sedig ◽  
Jessica L. Spruit ◽  
Trisha K. Paul ◽  
Melissa K. Cousino ◽  
Harlan McCaffery ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Health Care Providers ◽  
Life Experiences ◽  
The United States ◽  
Parental Perception ◽  
Care Providers ◽  
Supportive Services ◽  
Bereaved Parents ◽  
Actual Decision

Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child’s life. This study asked bereaved parents to reflect on their child’s end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child’s life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making ( P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.

The Evolutionary Nature of Parent–Provider Relationships at Child’s End of Life With Cancer

2020 ◽  
Vol 26 (3) ◽  
pp. 254-268
Author(s):  
Maiara R. dos Santos ◽  
Regina Szylit ◽  
Janet A. Deatrick ◽  
Kim Mooney-Doyle ◽  
Debra L. Wiegand
Keyword(s):  
End Of Life ◽  
Health Care Providers ◽  
Hospital Setting ◽  
Study Data ◽  
Care Providers ◽  
Research And Practice ◽  
Parental Experiences ◽  
Bereaved Parents ◽  
New Meanings ◽  
Complex Relationships

Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their bereavement. Therefore, the purpose of this study was to understand parental experiences about their relationships with providers at their child’s end of life with cancer and describe the manifestations of their grief. In this hermeneutic study, data were collected through interviews with bereaved parents and observation of families and health care providers in the hospital setting. Parents variously experienced complex relationships characterized by support, collaboration, trust, silence, deterioration, hierarchy, and tolerating, which were interchangeable and varied overtime, as new meanings were incorporated into their experiences. Through better understanding of the nature of these relationships, nurses can provide leadership in research and practice for identifying consequences of their care.

Delivering End-of-Life Cancer Care: Perspectives of Providers

2017 ◽  
Vol 35 (3) ◽  
pp. 497-504 ◽  
Author(s):  
Manali I. Patel ◽  
Vyjeyanthi S. Periyakoil ◽  
David Moore ◽  
Andrea Nevedal ◽  
Tumaini R. Coker
Keyword(s):  
End Of Life ◽  
Health Care Providers ◽  
Cancer Care ◽  
Care Delivery ◽  
Comparative Method ◽  
The United States ◽  
Home Delivery ◽  
Care Providers ◽  
Face To Face ◽  
Care Services

Objectives: Persistent gaps in end-of-life cancer care delivery and growing associated expenditures remain imminent US public health issues. The objective of this study was to understand clinical providers’ experiences delivering cancer care for patients at the end of life and their perspectives on potential solutions to improve quality of care. Methods: Semistructured interviews were conducted with 75 cancer care providers across the United States. The interviews were recorded, transcribed, and analyzed using constant comparative method of qualitative analysis. Results: Providers identified 3 major cancer care delivery challenges including lack of time to educate patients and caregivers due to clinical volume and administrative burdens, ambiguity in determining both prognosis and timing of palliative care at the end-of-life, and lack of adequate systems to support non-face-to-face communication with patients. To address these challenges, providers endorsed several options for clinical practice redesign in their settings. These include use of a lay health worker to assist in addressing early advance care planning, proactive non-face-to-face communication with patients specifically regarding symptom management, and community and in-home delivery of cancer care services. Discussion: Specific strategies for cancer care redesign endorsed by health-care providers may be used to create interventions that can more efficiently and effectively address gaps in end-of-life cancer care.

Improving Health Care Provider Communication in End-of-Life Decision-Making

2017 ◽  
Vol 28 (2) ◽  
pp. 124-132 ◽  
Author(s):  
Tracey Wilson ◽  
Cathy Haut ◽  
Bimbola Akintade
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Critical Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Care Providers ◽  
Improvement Project ◽  
Daunting Task ◽  
End Of Life Decision ◽  
Life Decision

Critical care providers are responsible for many aspects of patient care, primarily focusing on preserving life. However, nearly 40% of patients who are admitted to an adult critical care unit will not survive. Initiating a conversation about end-of-life decision-making is a daunting task. Often, health care providers are not trained, experienced, or comfortable facilitating these conversations. This article describes a quality improvement project that identified current views on end-of-life communication in the intensive care unit and potential barriers that obstruct open discussion, and offering strategies for improvement.

Are Health-Care Providers Well Prepared in Providing Optimal End-of-Life Care to Critically Ill Patients? A Cross-Sectional Study at a Tertiary Care Hospital in the United States

2018 ◽  
Vol 35 (10) ◽  
pp. 1080-1094 ◽  
Author(s):  
Kartikeya Rajdev ◽  
Nina Loghmanieh ◽  
Maria A. Farberov ◽  
Seleshi Demissie ◽  
Theodore Maniatis
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Critically Ill ◽  
Health Care Providers ◽  
Critically Ill Patients ◽  
The United States ◽  
Care Providers ◽  
Strongly Agree ◽  
Eol Care

It is important for health-care providers to be comfortable in providing end-of-life (EOL) care to critically ill patients and realizing when continuing aggressive measures would be futile. Therefore, there is a need to understand health-care providers’ self-perceived skills and barriers to providing optimum EOL care. A total of 660 health-care providers from medicine and surgery departments were asked via e-mail to complete an anonymous survey assessing their self-reported EOL care competencies, of which 238 responses were received. Our study identified several deficiencies in the self-reported EOL care competencies among health-care providers. Around 34% of the participants either disagreed (strongly disagree or disagree) or were neutral when asked whether they feel well prepared for delivering EOL care. Around 30% of the participants did not agree (agree and strongly agree) that they were well prepared to determine when to refer patients to hospice. 51% of the participants, did not agree (agree and strongly agree) that clear and accurate information is delivered by team members to patients/family. The most common barrier to providing EOL care in the intensive care unit was family not accepting the patient’s poor prognosis. Nursing staff (registered nurse) had higher knowledge and attitudes mean competency scores than the medical staff. Attending physicians reported stronger knowledge competencies when compared to residents and fellows. More than half of the participants denied having received any previous training in EOL care. 82% of the participants agreed that training should be mandatory in this field. Most of the participants reported that the palliative care team is involved in EOL care when the patient is believed to be terminally ill. Apart from a need for a stronger training in the field of EOL care for health-care providers, the overall policies surrounding EOL and palliative care delivery require further evaluation and improvement to promote better outcomes in caring patients at the EOL.

scholarly journals Neurologist–patient communication about epilepsy in the United States, Spain, and Germany

2018 ◽  
Vol 8 (2) ◽  
pp. 93-101 ◽  
Author(s):  
John M. Stern ◽  
Fernando Cendes ◽  
Frank Gilliam ◽  
Patrick Kwan ◽  
Philippe Ryvlin ◽  
...  
Keyword(s):  
United States ◽  
Decision Making ◽  
Health Care Providers ◽  
Seizure Control ◽  
Treatment Decision ◽  
The United States ◽  
Patient Communication ◽  
Care Planning ◽  
Care Providers ◽  
Word Level

BackgroundEffective communication between patients and their health care providers is recognized as critically important to improve the quality of health services for individuals with epilepsy. We aimed to describe in-office neurologist–patient conversations about epilepsy and focus on disease identification, shared decision-making, and care planning.MethodsTranscripts and audio recordings of conversations between patients and neurologists in the United States, Spain, and Germany were analyzed linguistically in the topic areas of epilepsy identification and diagnosis, disease education, treatments, and care planning. Analyses included word-level assessments, topic switching, strategies of information elicitation, identification of topics discussed, quantification of questions asked, and assessment of types of questions asked.ResultsConversations of 17 neurologists in the United States, 12 in Spain, and 6 in Germany, with 50, 20, and 16 patients, respectively, were analyzed. Neurologists tended to utilize an event-based, patient-friendly vocabulary to refer to seizures, and in the United States, they avoided using the term “epilepsy.” Regardless of who initiated the treatment discussion, the neurologists in all 3 countries were unilaterally responsible for the treatment decision and choice of medication. When describing a new medication, neurologists most often discussed potential side effects but did not review potential benefits. Neurologists rarely defined seizure control and did not ask patients what seizure control meant to them.ConclusionsWe identified opportunities related to vocabulary, decision-making, and treatment goal setting that could be targeted to improve neurologist–patient communication about epilepsy, and ultimately, the overall treatment experience and outcomes for patients.

Dying on Hospice in the Midst of an Opioid Crisis: What Should We Do Now?

2018 ◽  
Vol 36 (4) ◽  
pp. 273-281 ◽  
Author(s):  
Jennifer Gabbard ◽  
Allison Jordan ◽  
Julie Mitchell ◽  
Mark Corbett ◽  
Patrick White ◽  
...  
Keyword(s):  
Mental Health ◽  
United States ◽  
Health Care ◽  
End Of Life ◽  
Health Care Providers ◽  
The United States ◽  
Care Providers ◽  
The Past ◽  
Opioid Crisis ◽  
Prevalence Of Pain

The current opioid crisis in the United States is a major problem facing health-care providers, even at the end of life. Opioids continue to be the mainstay treatment for pain at the end of life, with the prevalence of pain reported in up to 80% of patients and tends to increase as one gets closer toward the end of life. In the past year, 20.2 million Americans had a substance use disorder (SUD) and SUDs are disabling disorders that largely go untreated. In addition, the coexistence of both a mental health and SUD is very common with the use of opioids often as a means of chemical coping. Most hospice programs do not have standardized SUD policies/guidelines in place despite the increasing concerns about substance abuse within the United States. The goal of this article is to review the literature on this topic and offer strategies on how to manage pain in patients who have active SUD or who are at risk for developing SUD in those dying on hospice.

scholarly journals Multi-level considerations for optimal implementation of long-acting injectable antiretroviral therapy to treat people living with HIV: perspectives of health care providers participating in phase 3 trials

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Andrea Mantsios ◽  
Miranda Murray ◽  
Tahilin S. Karver ◽  
Wendy Davis ◽  
Noya Galai ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Health System ◽  
Health Care Providers ◽  
The United States ◽  
Provider Communication ◽  
Care Providers ◽  
Patient Provider Communication ◽  
Multi Level ◽  
Long Acting

Abstract Background Long-acting injectable antiretroviral therapy (LA ART) has been shown to be non-inferior to daily oral ART, with high patient satisfaction and preference to oral standard of care in research to date, and has recently been approved for use in the United States and Europe. This study examined the perspectives of health care providers participating in LA ART clinical trials on potential barriers and solutions to LA ART roll-out into real world settings. Methods This analysis draws on two data sources: (1) open-ended questions embedded in a structured online survey of 329 health care providers participating in the ATLAS-2 M trial across 13 countries; and (2) in-depth interviews with 14 providers participating in FLAIR/ ATLAS/ATLAS-2 M trials in the United States and Spain. Both assessments explored provider views and clinic dynamics related to the introduction of LA ART and were analyzed using thematic content analysis. The Consolidated Framework for Implementation Research (CFIR) was drawn on as the conceptual framework underpinning development of a model depicting study findings. Results Barriers and proposed solutions to LA ART implementation were identified at the individual, clinic and health system levels. Provider perceptions of patient level barriers included challenges with adhering to frequent injection appointments and injection tolerability. Proposed solutions included patient education, having designated staff for clinic visit retention, and clinic flexibility with appointment scheduling. The main provider concern was identifying appropriate candidates for LA ART; proposed solutions focused on patient provider communication and decision making. Clinic level barriers included the need for additional skilled individuals to administer injections, shifts in workflow as demand increases and the logistics of cold-chain storage. Proposed solutions included staff hiring and training, strategic planning around workflow and logistics, and the possibility of offering injections in other settings, including the home. Health system level barriers included cost and approvals from national regulatory bodies. Potential solutions included governments subsidizing treatment, ensuring cost is competitive with oral ART, and offering co-pay assistance. Conclusions Results suggest the importance of multi-level support systems to optimize patient-provider communication and treatment decision-making; clinic staffing, workflow, logistics protocols and infrastructure; and cost-related factors within a given health system.

scholarly journals Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis

2020 ◽  
Vol 37 (9) ◽  
pp. 728-737
Author(s):  
Melissa J. Armstrong ◽  
Slande Alliance ◽  
Pamela Corsentino ◽  
Susan M. Maixner ◽  
Henry L. Paulson ◽  
...  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Dementia With Lewy Bodies ◽  
Skilled Nursing Facility ◽  
Lewy Bodies ◽  
The United States ◽  
Care Providers ◽  
Skilled Nursing ◽  
Eol Care

Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.

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