Silent Screams, Tearful Silence, Esta Bien: A Brief Journey through the Sounds of a Palliative Care Family Meeting

2019 ◽  
Vol 22 (4) ◽  
pp. 461-462
Author(s):  
Patrick J. Macmillan ◽  
Dave DiPalma
Keyword(s):  
Palliative Care ◽  
Family Meeting ◽  
Care Family

What is the evidence for conducting palliative care family meetings? A systematic review

2016 ◽  
Vol 31 (3) ◽  
pp. 197-211 ◽  
Author(s):  
Philippa J Cahill ◽  
Elizabeth A Lobb ◽  
Christine Sanderson ◽  
Jane L Phillips
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Cochrane Collaboration ◽  
Inpatient Setting ◽  
Family Meeting ◽  
Family Meetings ◽  
Palliative Care Setting ◽  
Care Family ◽  
Support Family ◽  
Palliative Patients

Background: Structured family meeting procedures and guidelines suggest that these forums enhance family–patient–team communication in the palliative care inpatient setting. However, the vulnerability of palliative patients and the resources required to implement family meetings in accordance with recommended guidelines make better understanding about the effectiveness of this type of intervention an important priority. Aim and design: This systematic review examines the evidence supporting family meetings as a strategy to address the needs of palliative patients and their families. The review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. Data sources: Six medical and psychosocial databases and “CareSearch,” a palliative care–specific database, were used to identify studies reporting empirical data, published in English in peer-reviewed journals from 1980 to March 2015. Book chapters, expert opinion, and gray literature were excluded. The Cochrane Collaboration Tool assessed risk of bias. Results: Of the 5051 articles identified, 13 met the inclusion criteria: 10 quantitative and 3 qualitative studies. There was low-level evidence to support family meetings. Only two quantitative pre- and post-studies used a validated palliative care family outcome measure with both studies reporting significant results post-family meetings. Four other quantitative studies reported significant results using non-validated measures. Conclusion: Despite the existence of consensus-based family meeting guidelines, there is a paucity of evidence to support family meetings in the inpatient palliative care setting. Further research using more robust designs, validated outcome measures, and an economic analysis are required to build the family meeting evidence before they are routinely adopted into clinical practice.

scholarly journals Necessidades de cuidados de enfermagem do cuidador da pessoa sob cuidados paliativos

2011 ◽  
Vol 64 (1) ◽  
pp. 180-184 ◽  
Author(s):  
João Vicente César Fonseca ◽  
Teresa Rebelo
Keyword(s):  
Palliative Care ◽  
Family Nursing ◽  
Care Family

O objetivo foi identificar as necessidades de cuidados de enfermagem do cuidador da pessoa em fase terminal e respectivas intervenções de enfermagem, recorrendo a uma revisão sistemática da literatura. Foi efectuada uma pesquisa na EBSCO e ProQuest e procurados artigos científicos em texto integral, publicados entre janeiro de 1998 a dez de 2008, usando as seguintes palavras-chave: "Palliative care", "Family", "Nursing" e "Needs". Foi utilizado o método de PI[C]OD e seleccionados 14 artigos do total de 77. As necessidades do cuidador da pessoa em fase terminal são: comunicação; relação de confiança e segurança; reconhecimento e operacionalização de desejos; preparação para o luto; necessidades de informação; capacitação; envolvimento nos cuidados; necessidades emocionais; necessidades espirituais e necessidades de descanso. Concluiu-se que a família apresenta diferentes necessidades que requerem uma intervenção personalizada do enfermeiro, através do estabelecimento de uma relação de confiança

Caregiver burden and distress

2021 ◽  
pp. 303-310
Author(s):  
Rinat Nissim ◽  
Sarah Hales ◽  
Gary Rodin
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Personal Growth ◽  
Advanced Disease ◽  
Supporting Evidence ◽  
Care Providers ◽  
Wide Range ◽  
Care Family ◽  
The Common ◽  
Physical Challenges

Caregivers of patients with advanced disease can be seen as both care providers and as receivers of care. Family caregivers frequently face a wide range of their own psychological, spiritual, social, financial, and physical challenges, which may increase in duration due to longer survival and more ambulatory and home care of patients with advanced disease. While support for family caregivers is an integral component of quality palliative care, such support is often unavailable and there is a dearth of evidence-based interventions for caregivers. This chapter will provide an overview of the common issues faced by family caregivers of adults in palliative care, the factors that contribute to or exacerbate these problems, the interventions designed to address them and their supporting evidence, and the potential for personal growth in caregivers. Gaps in clinical practice and research are identified and future directions for clinical attention and research are discussed.

The Fourth Domain of Palliative Care

2018 ◽  
Author(s):  
E. Alessandra Strada
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Psychosocial Interventions ◽  
Social Needs ◽  
Family Meeting ◽  
Management Of Complications ◽  
Palliative Care Setting ◽  
The Family ◽  
The Many ◽  
Clinical Case Scenarios

This chapter proposes palliative psychology competencies in the fourth domain of palliative care, which addresses the social needs of the patient and the family. The unit of care in palliative care is represented by the patient and the family; thus, this chapter highlights the unique needs of family caregivers. The many challenges of caregiving are described by reviewing the literature and using clinical case scenarios. The risk factors and protective factors in caregiving are discussed and incorporated in assessment templates. Psychological and psychosocial interventions that can effectively support family caregivers are discussed. The function, structure, and execution of a family meeting in the palliative care setting is described. This chapter also describes bereavement support for family caregivers and the management of complications of bereavement.

Retrospective review of end-of-life care in the last month of life in older patients with multiple myeloma: what collaboration between haematologists and palliative care teams?

2020 ◽  
pp. bmjspcare-2020-002293
Author(s):  
Thomas Chalopin ◽  
Nicolas Vallet ◽  
Lotfi Benboubker ◽  
Marlène Ochmann ◽  
Emmanuel Gyan ◽  
...  
Keyword(s):  
Multiple Myeloma ◽  
Palliative Care ◽  
End Of Life ◽  
Older Patients ◽  
High Rate ◽  
Palliative Care Teams ◽  
Care Family ◽  
Eol Care

ObjectivesPatients with haematological malignancies (HM) receive more aggressive treatments near the end-of-life (EOL) than patients with solid tumours. Palliative care (PC) needs are less widely acknowledged in patients with multiple myeloma (MM) than in other HM. The main objective of our study was to describe EOL care and PC referral in a population of older patients with MM.MethodsWe retrospectively included deceased inpatients and outpatients with an MM previously diagnosed at the age of 70 and over in two tertiary centres in France. We reported EOL characteristics regarding treatments considered to be aggressive—antimyeloma therapies, hospitalisations, blood product transfusions, intensive care units (ICUs) or emergency admissions—and PC referral.ResultsWe included 119 patients. In their last month of life, 75 (63%) were hospitalised for fever, pain, asthenia, anaemia or bleeding, 49 (41%) were admitted in the emergency department and 12 (10%) in ICU, 76 (64%) still received antimyeloma therapy and 45 (38%) had at least two transfusions. Only 24 (20%) received PC intervention for pain, global care, family support, anxiety, social care or confusion. Median follow-up until death was 20 days.ConclusionsOur study found a high rate of hospitalisations and antimyeloma therapies in the last month of life. The PC referral rate was low, often once specific treatments were stopped. Our results suggest the need for more effective collaboration between PC teams and haematologists in order to respond to the specific needs of these patients and to improve their quality of care at EOL.

Palliative medicine family conferences and caregiver psychological distress during prolonged mechanical ventilation

2020 ◽  
Vol 10 (4) ◽  
pp. 443-451 ◽  
Author(s):  
Yi-Han Lee ◽  
Jiao-Syuan Wang ◽  
Randall Curtis ◽  
Sheng-Jean Huang ◽  
Shy-Shin Chang ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Palliative Care ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Psychological Symptoms ◽  
Prolonged Mechanical Ventilation ◽  
Event Scale ◽  
Quality Of Dying ◽  
Care Family ◽  
The Impact

ObjectivesLittle is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to explore the role of palliative care and the quality of dying and death (QODD) in patients and understand the psychological symptoms of these caregivers.MethodsA longitudinal study was performed in five hospitals in Taipei, Taiwan. Routine palliative care family conferences and optional consultation with a palliative care specialist were provided, and family caregivers were asked to complete surveys.ResultsIn total, 136 family caregivers of 136 patients receiving PMV were recruited and underwent face-to-face baseline interviews in 2016–2017. By 2018, 61 (45%) of 136 patients had died. We successfully interviewed 30 caregivers of patients’ death to collect information on the QODD of patients and administer the Impact of Event Scale (IES), Hospital Anxiety and Depression Scale (HADS) and Center for Epidemiologic Studies Depression (CES-D) scale to caregivers. We observed that more frequent palliative care family conferences were associated with poorer QODD in patients (coefficients: −44.04% and 95% CIs −75.65 to −12.44), and more psychological symptoms among caregivers (coefficient: 9.77% and 95% CI 1.63 to 17.90 on CES-D and coefficient: 7.67% and 95% CI 0.78 to 14.55 on HADS). A higher caregiver burden at baseline correlated with lower psychological symptoms (coefficient: −0.35% and 95% CI −0.58 to −0.11 on IES and coefficient: −0.22% and 95% CI −0.40 to −0.05 on CES-D) among caregivers following the patients’ death. Caregivers’ who accepted the concept of palliative care had fewer psychological symptoms after patients’ death (coefficient: −3.29% and 95% CI −6.32 to −0.25 on IES and coefficient: −3.22% and 95% CI −5.24 to −1.20 on CES-D).ConclusionsPalliative care conferences were more common among family members with increased distress. Higher caregiver burden and caregiver acceptance of palliative care at baseline both predicted lower levels of caregiver distress after death.

Structured outpatient palliative care family conferences to enhance early integration of palliative care in advanced cancer.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 36-36
Author(s):  
Cheruppolil R. Santhosh-Kumar ◽  
Deborah Gray ◽  
Stephanie Struve ◽  
Carol Huibregtse
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Direct Result ◽  
Do Not Resuscitate ◽  
Advanced Directives ◽  
Early Integration ◽  
Early Palliative Care ◽  
Family Conference ◽  
Nurse Navigator ◽  
Care Family

36 Background: Integrating early palliative care with cancer treatment improves quality of life and survival. Effective communication among physicians, patients and their loved ones is crucial to end-of-life, hospice and palliative care discussions. To address the inherent challenges in these discussions, we implemented a structured outpatient palliative care family conference (OFC) program at our community cancer clinic. Methods: A team comprising a hematologist/oncologist, cancer nurse navigator and social worker developed a toolkit for conducting an OFC, recognizing that each family conference is a unique adaptive challenge. New patients with advanced malignancies and limited life expectancy (<12 months) were offered a 90-minute structured OFC attended by the care team, patient and family members and or friends. Pre and post-conference patient satisfaction surveys and other data were collected prospectively. Results: From March 2014 through May 2015, fortyOFC were conducted (16 female and 24 male patients, median age: 67 years). Diagnoses were advanced gastrointestinal (14), lung (12), hematologic (6) and other (8) malignancies. As a direct result of the OFC program, 18 patients ordered do-not-resuscitate bracelets, 15 completed advanced directives, 7 submitted paperwork for disabled parking permits, 7 were referred to hospice and 4 for rehabilitation therapy. Further results are shown in the table. Conclusions: Structured outpatient palliative care family conferences improve satisfaction of end-of-life discussions and facilitate integration of palliative care options. Enhanced communication between providers, patients and loved ones eases the challenges of such discussions. The OFC approach could be a model for integrating palliative care in community cancer clinics. [Table: see text]

scholarly journals Assistência de enfermagem no fim da vida: relato de experiência

2021 ◽  
Vol 11 (34) ◽  
pp. 312-317
Author(s):  
Anna Rebeka Oliveira Ferreira ◽  
Wanderson Rocha Oliveira ◽  
Claudia Regina Marchiori Antunes Araújo ◽  
Brenda Melissa Barros Mota dos Santos ◽  
Camila Wohlenberg Camparoto ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Palliative Care ◽  
End Of Life ◽  
Nursing Care ◽  
Life Experience ◽  
Family Orientation ◽  
Care Family ◽  
Terapia Intensiva ◽  
Care Assistance ◽  
The City

Trata-se de um relato de experiência com o objetivo de descrever o processo de identificação e discussão das principais dificuldades vivenciadas durante a assistência ao paciente no fim da vida na Unidade de Terapia Intensiva. Este relato foi desenvolvido em um hospital do município de Maringá, com quatro enfermeiras, vinte e cinco técnicos de enfermagem e seis estagiários de enfermagem. Após o aprofundamento teórico, foi aplicado um questionário para a identificação das principais dificuldades da equipe na realização dos cuidados paliativos e realizado uma aula dialogada sobre o tema. Verificamos que os profissionais possuíam dúvidas principalmente sobre a classificação em cuidados paliativos, orientação a família e nutrição do paciente, o que possibilitou a padronização e classificação da assistência no setor. A aula contribuiu para que o profissional tivesse um maior embasamento na realização de uma assistência integral de qualidade para o paciente e família.Descritores: Assistência no Fim da Vida, Cuidados de Enfermagem, Sistematização da Assistência. Nursing care at the end of life: experience reportAbstract: This is an experience report with the aim of describing process of identification and discussion of the main occurrences experienced during patient care at the end of life in the Intensive Care Unit. This report was developed in a hospital in the city of Maringá, with four nurses, twenty-five nursing technicians and six nursing interns. After the theoretical deepening, a questionnaire was applied to identify the main difficulties of the team in carrying out palliative care and a lecture on the topic was held. We verified that the professionals had doubts about the classification in palliative care, family orientation and patient nutrition, what made possible the to standardize and classify assistance in the sector. The class contributes so that the professional has a greater basis in carrying to provide better quality comprehensive care for patient and family.Descriptors: End of Life Assistance, Nursing Care, Assistance Systematization. Apoyo de la enfermería al final de la vida: informe de experienciaResumen: Este es un informe de experiencia con el objetivo de describir el proceso de identificación y discusión de las principales dificultades experimentadas durante la atención pacientes que se encuentran en la fase final de su vida en la Unidad de Terapia Intensiva. Este informe fue desarrollado en un hospital de la ciudad de Maringá, con cuatro enfermeras, veinticinco técnicos de enfermería y seis pasantes de enfermería. Después de profundización teórica, se aplicó un cuestionario para identificar las principales dificultades del equipo en la realización de cuidados paliativos, y se realizó una clase dialogada sobre el tema. Comprobamos que los profesionales tenían dudas principalmente sobre la clasificación en cuidados paliativos, orientación a la familia y nutrición del paciente, lo que hizo posible lestandarizar y clasificar la asistencia el sector. El aula contribuyó para que el profesional tuviera una mayor base en la realización de una atención integral de mejor calidad para el paciente y familia.Descriptores: Asistencia al Final de la Vida, Cuidado de Enfermería, Sistematización de la Asistencia.

scholarly journals Educational programs for patients and persons providing palliative care as a way to improve its quality in geriatrics

2015 ◽  
Vol 96 (4) ◽  
pp. 567-571
Author(s):  
I P Ponomareva ◽  
E V Tkachenko
Keyword(s):  
Palliative Care ◽  
Care Management ◽  
Educational Programs ◽  
Professional Staff ◽  
Social Characteristics ◽  
Raising Awareness ◽  
Care Family ◽  
Severe Pathology ◽  
The One ◽  
The Cost

The efficiency of educational programs implementation in geriatrics in managing the palliative care training was explored. The article presents the literature review devoted to the problem of performing educational programs for patients and their relatives on the palliative care management in geriatrics. Currently there is an unresolved contradiction: on the one hand - the growing number of elderly and senile patients with severe pathology, accompanied by a significant dependency on others, on the other hand - the lack of professional staff and the lack of care, family problems in the competent care management, lack of specialized training and information programs. The situation is aggravated by the lack of interagency cooperation, and the inability to realize in practice the main principle of palliative care - multidisciplinary approach. Review of the literature demonstrated that the development and implementation of educational programs in palliative care, raising awareness of patients and their families are able to solve not only medical, but also economic problems, reducing the number of hospitalizations by twice, number of ambulance calls by twice as well. Introducing the information and education programs for patients with chronic conditions significantly reduces the risk of complications and, consequently, the cost of treatment and rehabilitation. Features of palliative care programs in geriatrics is teaching not only the patients, but their relatives by specialists with medical education, as well as and training of volunteers, social service professionals by academic specialists, taking into account the clinical, psychological and social characteristics of older patients.

Issues in Pediatric Palliative Care: Understanding Families

2005 ◽  
Vol 21 (3) ◽  
pp. 165-172 ◽  
Author(s):  
Abraham S. Bartell ◽  
David W. Kissane
Keyword(s):  
Palliative Care ◽  
Palliative Medicine ◽  
Family Care ◽  
Pediatric Palliative Care ◽  
Integrate Care ◽  
Grief Therapy ◽  
Care Family ◽  
Family Based ◽  
Hospice And Palliative Care

While family-centred care has always been Part of the rhetoric of hospice and palliative care, few models have been developed that successfully integrate care of the caregivers into the overall schema. Systematic analyses of interventions have failed to produce any demonstrable benefit to families arising from the modern practice of palliative care. This alarming finding constitutes the greatest challenge for the 21st century. Pediatric palliative care may have much to teach in its approach to family care. Family-focused grief therapy is one model, used with both adolescent and adult families, that has promise for the field. The time has surely arrived for palliative medicine to focus on family-based research.

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