Storytelling In The Early Bereavement Period To Reduce Emotional Distress Among Surrogates Involved In A Decision To Limit Life Support In The Icu: A Pilot Feasibility Trial
Posttraumatic-stress-disorder; Bereavement; Scale; Posttraumatic-stress-disorder; Depression; Surrogate Decision Making; Intensive-care-unit; Critical Care Medicine; Critically-ill; Terminal Care; Family-members; End; Critical Illness; Self-regulation; Intensive Care; Complicated Grief
OBJECTIVES:
Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative self-disclosure (storytelling) reduces emotional distress after other traumatic experiences. We sought to assess the feasibility, acceptability, and tolerability of storytelling among bereaved surrogates involved in a decision to limit life support in the ICU.
DESIGN:
Pilot single-blind trial.
SETTING:
Five ICUs across three hospitals within a single health system between June 2013 and November 2014.
SUBJECTS:
Bereaved surrogates of ICU patients.
INTERVENTIONS:
Storytelling and control conditions involved printed bereavement materials and follow-up assessments. Storytelling involved a single 1- to 2-hour home or telephone visit by a trained interventionist who elicited the surrogate's story.
MEASUREMENTS AND MAIN RESULTS:
The primary outcomes were feasibility (rates of enrollment, intervention receipt, 3- and 6-mo follow-up), acceptability (closed and open-ended end-of-study feedback at 6 mo), and tolerability (acute mental health services referral). Of 53 eligible surrogates, 32 (60%) consented to treatment allocation. Surrogates' mean age was 55.5 (SD, 11.8), and they were making decisions for their parent (47%), spouse (28%), sibling (13%), child (3%), or other relation (8%). We allocated 14 to control and 18 to storytelling, 17 of 18 (94%) received storytelling, 14 of 14 (100%) and 13 of 14 (94%) control subjects and 16 of 18 (89%) and 17 of 18 (94%) storytelling subjects completed their 3- and 6-month telephone assessments. At 6 months, nine of 13 control participants (69%) and 16 of 17 storytelling subjects (94%) reported feeling "better" or "much better," and none felt "much worse." One control subject (8%) and one storytelling subject (6%) said that the study was burdensome, and one control subject (8%) wished they had not participated. No subjects required acute mental health services referral.
CONCLUSION:
A clinical trial of storytelling in this study population is feasible, acceptable, and tolerable.
Barnato AE; Schenker Y; Tiver G; Dew MA; Arnold RM; Nunez ER; Reynolds CF
Critical Care Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1097/CCM.0000000000002009
Parental Involvement In Neonatal Critical Care Decision-making.
Sociology; Life; Interrogatives; Consultation; Social Sciences; Biomedical; Decision Making; Shared Decision; Recommendations; Medical Authority; Communication; Conversation; End Of Life Care; Public; Public Environmental & Occupational Health; End; Resistance; Training; Cooperation; Communication; Palliative Care; Decision Making; Intensive Care; Participation; Ethics; Medicine; Physicians; Parents; Conversational Analysis; Decisions; Infant; Palliative Treatment; Parenting; Infants (newborn); Decision Making; Parent And Child; Analysis
Conversation Analysis; Decision-making; End Of Life; Ethics; Neonatal; Parental Involvement
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: 'making recommendations' and 'providing options'. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. 'Making recommendations' led to misalignment and reduced opportunities for questions and collaboration; 'providing options' led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance.
Shaw C; Stokoe E; Gallagher K; Aladangady N; Marlow N
Sociology Of Health & Illness
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1111/1467-9566.12455
Pediatric Palliative Care And Child Psychiatry: A Model For Enhancing Practice And Collaboration.
Adolescent; Advanced Cancer; Of-life; Consultation; Services; National-survey; End; Depression; Recognition; Associations; Health Care Sciences & Services
As the field of Pediatric Palliative Care continues to develop, it is important to consider the scope of practice and the utility of collaboration with other specialties, including child and adolescent psychiatry. The integration of psychiatry and palliative medicine has been explored in adult practice, but has not yet been elaborated in pediatrics. This article proposes a clinical model of care that highlights the overlapping and unique expertise that each discipline brings, in a continuum of collaboration, and proposes an integrated care model for the most complex patients and families. Case examples are used to define specific professional skills and roles, and to describe shared and distinct clinical approaches used by pediatric palliative care and child psychiatry. Effective collaboration provides opportunities for cross-disciplinary educational exchange and enhanced care of children and families with comorbid mental health issues and serious illness.
Muriel AC; Wolfe J; Block SD
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1089/jpm.2015.0354
Ethics, Emotions, And The Skills Of Talking About Progressing Disease With Terminally Ill Adolescents: A Review.
Parents; Young Adult; Prognostic Disclosure; Advanced Cancer; Of-life Care; Communication; Pediatric Palliative Care; Child; End; Pediatrics; Bad-news; Adolescent; Ethics; Communication; Emotions; Teenagers; Youth; Analysis; Psychological Aspects
IMPORTANCE:
For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help to facilitate adolescents' emerging autonomy, they often must also work with parents' wishes to protect patients from the emotional distress of hearing bad news.
OBSERVATIONS:
We reviewed the ethical justifications for and against truth-telling, and we considered the published ethical and practice guidance, as well as the perspectives of patients, parents, and clinicians involved in these cases. We also explored particular challenges with respect to the cultural context, timing, and content of conversations at the end of adolescents' lives. In most cases, clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. We suggest some "phrases that help" when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members.
CONCLUSIONS AND RELEVANCE:
The pediatrician's opportunities to engage in difficult conversations about poor prognosis may be rare, but such conversations can be crucial. These discussions affect how patients live at the end of their lives, how they die, and how their families go on. Improved understanding of basic principles of communication, as well as augmented understanding of patient, family, and clinician perspectives may better enable us to navigate these important conversations.
Rosenberg AR; Wolfe J; Wiener L; Lyon M; Feudtner C
Jama Pediatrics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1001/jamapediatrics.2016.2142
Compassionate Extubation For A Peaceful Death In The Setting Of A Community Hospital: A Case-series Study
Geriatrics & Gerontology; Life; Quality Of Death; Withdrawal; Intensive-care-unit; Palliative Care; Palliative Extubation; Good Death; Mechanical Ventilation; Support; End; Compassionate Extubation; Euthanasia; Hospice Care; Murder; Terminal Care/methods; Airway Extubation - Methods; Hospitals; Community - Organization & Administration; Geriatrics; Compassionate Extubation; Rc952-954.6
Compassionate Extubation; Palliative Extubation; Good Death; Hospice Care; Quality Of Death
Background
The use of compassionate extubation (CE) to alleviate suffering by terminating mechanical ventilation and withdrawing the endotracheal tube requires professional adherence and efficiency. The Hospice Palliative Care Act, amended on January 9, 2013, legalizes the CE procedure in Taiwan.
Methods
From September 20, 2013 to September 2, 2014, the hospice palliative care team at a community hospital received 20 consultations for CE. Eight cases were excluded because of non-qualification. Following approval from the Ethics Committee, the medical records of the remaining 12 patients were reviewed and grouped by the underlying disease: A, “terminal-stage cancer”; B, “non-cancer out-of-hospital cardiac arrest”; and C, “non-cancer organ failure”. Time to extubation using a cut-off at 48 hours was assessed.
Results
The mean ages of patients (standard deviation) in groups A, B, and C were 66.3 (14.9) years, 72 (19.1) years, and 80.3 (4.0) years, respectively. The mean number of days of intubation at consultation were 6.8 (4.9), 7.3 (4.9), and 179.3 (271.6), respectively. The mean total doses of opioids (as morphine-equivalent dose) in the 24 hours preceding CE were 76 (87.5) mg, 3.3 (5.8) mg, and 43.3 (15.3) mg. The median times from extubation (range) to death were 97 (0.2–245) hours, 0.3 (0.2–0.4) hours, and 6.1 (3.6–71.8) hours. Compared to those requiring <48-hour preparatory time, patients requiring >48 hours to the moment of CE were younger (62.8 years vs 75.5 years), required a mean time of 122 hours (vs 30 hours) to CE (P=0.004), had shorter length of stay (33.3 days vs 77.8 days), required specialist social worker intervention in 75% of cases (vs 37.5%), and had a median duration of intubation of 11.5 days (vs 5.5 days).
Conclusion
CE was carried out according to protocol, and the median time from extubation to death varies determined by the underlying disease which was 0.3 hour in patients admitted after out-of-hospital cardiac arrest and 97 hours in patients with advanced cancer.
Victor C Kok
Clinical Interventions In Aging
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).