State of the science and future research directions in palliative and end-of-life care in paediatric cardiology: a report from the Harvard Radcliffe Accelerator Workshop

2021 ◽  
pp. 1-6
Author(s):  
Melissa K. Cousino ◽  
Blyth T. Lord ◽  
Elizabeth D. Blume
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Outcome Measurement ◽  
Research Participant ◽  
Management Training ◽  
Small Population ◽  
Future Research ◽  
Life Care ◽  
Paediatric Cardiology ◽  
State Of The Science

Abstract Workshop proceedings, priorities, and recommendations from the “State of the Science and Future Directions in Palliative and End-of-Life Care in Pediatric Cardiology,” a Harvard Radcliffe Accelerator Workshop, are detailed. Eight priorities for research were identified, including patient and family decision making, communication, patient and family experience, patient symptom measurement and management, training and curriculum development, teamwork, family hardships and bereavement, and ethical considerations. Barriers to research in this area were also identified: lack of outcome/measurement tools, lack of research funding, small population sizes, lack of effort/protected time for research, undervalued research topic by field and colleagues, and heterogeneous research participant diversity. Priorities and barriers were mostly consistent with those reported by the field of paediatric palliative care at large. These collective, consensus-based findings from diverse, multidisciplinary leaders in the field, as well as parent representatives, provide a catalyst for scientific advancement specific to paediatric and end-of-life care in paediatric cardiology.

Pediatric End of Life Care: Impact of Islamic Faith

2021 ◽  
pp. 019394592110165
Author(s):  
Shahad A. Hafez ◽  
Julia A. Snethen ◽  
Emmanuel Ngui ◽  
Julie Ellis ◽  
Murad Taani
Keyword(s):  
Saudi Arabia ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Experience ◽  
Primary Caregivers ◽  
Positive Influence ◽  
Future Research ◽  
Life Care ◽  
Beliefs And Practices ◽  
Education Practice

Studies investigating children and families’ experiences at end of life in Saudi Arabia are limited. However, one factor found to have an impact on patient and primary caregiver end of life care is Islam. Since women are the primary caregivers for children in Saudi Arabia, the purpose of this study was to explore the perceptions of Muslim women caring for a child at end of life. Using a qualitative approach, interviews were conducted with 24 female primary caregivers caring for a child at end of life. Thematic analysis was used to analyze the data. The researchers found that Islamic beliefs and practices had a positive influence on primary caregivers’ experiences. Islamic beliefs and practices helped support participants through their child’s end of life experience. Results have implications for health care education, practice, policy, and future research on end of life in Saudi Arabia other Muslim countries.

Patient and Family Engagement in THE Conversation

2017 ◽  
pp. 93-113
Author(s):  
Jennifer Freytag ◽  
Richard L. Street Jr.
Keyword(s):  
Health Outcomes ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Engagement ◽  
Future Research ◽  
Life Care ◽  
Patient Centered ◽  
Communication Framework ◽  
Communicative Functions ◽  
Main Ideas

This chapter uses a patient-centered communication framework to examine observational studies of patient and family engagement in communication about end-of-life care. It analyzes how the literature has connected communication with health outcomes in end-of-life care. Within this analysis, it brings together three main ideas. First, family plays an important and overlooked role in communication about end-of-life care. Second, the literature describes communication that serves multiple functions, and it describes the special challenges presented by end-of-life care communication. Finally, it links these communicative functions with health outcomes and outlines directions for future research.

Advance directives: the emerging body of research

1999 ◽  
Vol 8 (1) ◽  
pp. 514-519 ◽  
Author(s):  
BB Ott
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Demographic Data ◽  
The Body ◽  
Future Research ◽  
Computer Search ◽  
Life Care ◽  
Study Selection ◽  
New Procedures

BACKGROUND: With the passage of the Patient Self-Determination Act in 1990, new procedures and documents became available for planning end-of-life care. These new procedures and documents are now being examined scientifically. OBJECTIVE: To review existing research on the use of advance directives. DATA SOURCES: Computer search using Grateful Med software from the National Library of Medicine with MEDLINE and BIOETHICSLINE databases. STUDY SELECTION: Studies that showed an emerging consensus or reported vastly differing results were selected. Selected studies examined these specific areas: demographic data on patients with advance directives, completion rates, capacity to complete, patients' preferences, stability of patients' decisions over time, treatment choices, proxy decision makers, treatment provided, and cost. RESULTS: The body of important research about advance directives is growing. A profile of their clinical utility is emerging. CONCLUSIONS: The research done so far can stimulate future research and can begin to suggest possible changes in practice. However, the body of research is not yet large enough or well controlled enough to answer conclusively many of the questions about planning of end-of-life care.

Family communication and decision making at the end of life: A literature review

2014 ◽  
Vol 13 (3) ◽  
pp. 815-825 ◽  
Author(s):  
Cara L. Wallace
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Family Communication ◽  
End Of Life Care ◽  
Family Members ◽  
Empirical Literature ◽  
Future Research ◽  
Life Care ◽  
The Family

AbstractObjective:Patients and families coping with a terminal illness are faced with a number of decisions over the course of their disease. The role that family communication plays in the process of decision making is an important one. The objectives for this review are to examine the current state of empirical literature on the relationship between family communication and decision making about end-of-life care, to identify gaps, and to discuss implications for policy, practice, and future research.Method:Articles were identified using systematic keyword searches within the following relevant databases: Academic Search Complete, CINAHL Plus, Communications and Mass Media Complete, ERIC, PsychINFO, MEDLINE, SocINDEX, and ProQuest.Results:The three bodies of relevant literature that emerged during this review include: (1) the importance of family communication at the end of life (EoL); (2) family decision making at the EoL; and (3) the interrelationship of communication (both within the family and with healthcare professionals) and decision making at the EoL. While the literature highlights the role of communication between medical professionals and the patient or family members, there is very little focus on the process of how family communication among the family members themselves contributes to decision making at the end of life.Significance of results:Barriers to end-of-life care are important considerations for helping patients to access timely and appropriate services. Understanding the pertinent role of family communication as it relates to the decision for EoL care is the first step in working to provide another avenue for overcoming these barriers.

Communicating With Nursing Home Residents About End of Life

2021 ◽  
pp. 104990912110648
Author(s):  
Janet Sopcheck ◽  
Ruth M. Tappen
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Secondary Analysis ◽  
Nursing Home Residents ◽  
Future Research ◽  
Life Care ◽  
Older Individuals ◽  
Past Experiences

Approximately 33% of the 1.2 million older individuals residing in nursing homes have the capacity to discuss their preferences for end-of-life care, and 35% will die within their first year in the nursing home. These conversations necessary to promote care consistent with the resident’s preferences are often limited and most often occur when the resident is actively dying. The purpose of this secondary analysis was to understand the resident’s perspectives on end-of-life communication in the nursing home and suggest approaches to facilitate this communication. We interviewed 46 participants (16 residents, 10 family members, and 20 staff) in a Southeast Florida nursing home from January to May 2019. The data were analyzed using descriptive and pattern coding and matrices to decipher preliminary categories and thematic interpretation within and across each participant group. Two themes emerged from this secondary analysis that residents assume others know their end-of-life preferences, and past experiences may predict future end-of-life choices. Residents and family members were willing to discuss end-of-life care. Study findings also suggested that past experiences with the end-of-life and critical illness of another could impact residents’ and family members’ end-of-life care decisions, and that nurses’ recognition of subtle signs of a resident’s decline may trigger provider-initiated end-of-life conversations. Future research should focus on strategies to promote earlier end-of-life discussions to support independent decision-making about end-of-life care in this relatively dependent population of older adults.

Caring for Dying Infants: A Systematic Review of Healthcare Providers’ Perspectives of Neonatal Palliative Care

2020 ◽  
pp. 104990912096594
Author(s):  
Susanny J. Beltran ◽  
Marie Nicole Hamel
Keyword(s):  
United States ◽  
End Of Life ◽  
Nurse Practitioners ◽  
End Of Life Care ◽  
Healthcare Providers ◽  
The United States ◽  
Future Research ◽  
Care Practice ◽  
Life Care ◽  
Provider Perspectives

Objectives: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns and their families, to minimize suffering at the end of the neonate’s life. This paper seeks to systematically summarize healthcare providers’ perspectives related to end of life, in order to identify needs and inform future directions. Methods: Informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we systematically reviewed the literature discussing healthcare provider perspectives of neonatal end of life care ranging from year 2009 to 2020. To be included in the review, articles had to explicitly focus on perspectives of healthcare providers toward neonatal end of life care, be published in academic peer-reviewed sources, and focus on care in the United States. Results: Thirty-three articles were identified meeting all inclusion criteria. The literature covers, broadly, provider personal attitudes, experiences delivering care, practice approaches and barriers, and education and training needs. The experiences of physicians, physician assistants, nurse practitioners, and nurses are highlighted, while less is discussed of other providers involved with this work (e.g., social work, physical therapy). Conclusion: Future research should focus on developing and testing interventions aimed at training and supporting healthcare providers working with neonates at end of life, as well as addressing barriers to the development and implementation of neonatal palliative teams and guidelines across institutions.

End-of-life care in illicit drug users: mapping medication use

2021 ◽  
pp. bmjspcare-2021-002906
Author(s):  
Phoebe Ulrick ◽  
Stacey Panozzo ◽  
David Marco ◽  
Anna Collins ◽  
Jennifer Philip
Keyword(s):  
Drug Use ◽  
End Of Life ◽  
Dose Escalation ◽  
End Of Life Care ◽  
Illicit Drugs ◽  
Illicit Drug ◽  
Illicit Drug Use ◽  
Future Research ◽  
Life Care ◽  
Hospitalised Patients

BackgroundWhile clinical wisdom has long provided suggested guidance around caring for people who use illicit drugs (referred to as PWUD) at the end of life, there is striking paucity of empirical evidence underpinning these practices. Understanding medications and doses required to manage symptoms at the end of life is essential to provide effective end-of-life care for these patients. This study aimed to examine the type and dose of medications prescribed to hospitalised patients who use illicit drugs at the end of life, compared with patients without previous or current illicit drug use.MethodA retrospective medical record review was conducted on consecutive patient deaths between 2012 and 2017 at a metropolitan hospital. PWUD were identified using the International Classification of Diseases 10th Revision codes for illicit drug use. Daily dosage of opioids, benzodiazepines and antipsychotics was documented for the last 3 days of life and compared with a matched comparator group.ResultsPWUD patients (n=55) received higher doses of opioids, midazolam and antipsychotics than comparator patients (n=55) for each day, significant for opioids in the last 24 hours (p=0.01). PWUD patients received a significantly higher total opioid dose (median=480.0 mg vs 255.0 mg) and midazolam (median=15.0 mg vs 5.0 mg) (both p<0.05). Rates of dose escalation did not differ.ConclusionsResults suggest that PWUD require greater doses of symptom-controlling medications, particularly opioids and midazolam, at the end of life but that rates of dose escalation do not differ greatly. This study provides a foundation for future research to inform clinical guidelines for this cohort of palliative care patients.

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