scholarly journals End-of-life care in children and adolescents with cancer: perspectives from a French pediatric oncology care network

2021 ◽  
pp. 030089162110133
Author(s):  
Sophie Blais ◽  
Sarah Cohen-Gogo ◽  
Elodie Gouache ◽  
Lea Guerrini-Rousseau ◽  
Benoit Brethon ◽  
...  
Keyword(s):  
Palliative Care ◽  
Children And Adolescents ◽  
End Of Life ◽  
Pediatric Oncology ◽  
End Of Life Care ◽  
Hematologic Malignancies ◽  
Developed Countries ◽  
Median Number ◽  
Life Care ◽  
Do Not Resuscitate

Background: In developed countries, cancer remains the leading cause of pediatric death from illness after the neonatal period. Objective: To describe the end-of-life care characteristics of children and adolescents with solid tumors (ST) or hematologic malignancies (HM) who died from tumor progression in the Île-de-France area. Methods: This is a regional, multicentric, retrospective review of medical files of all children and adolescents with cancer who died over a 1-year period. Extensive data from the last 3 months of life were collected. Results: A total of 99 eligible patients died at a median age of 9.8 years (range, 0.3–24 years). The most frequent terminal symptoms were pain (n = 86), fatigue (n = 84), dyspnea (n = 49), and anorexia (n = 41). Median number of medications per patient was 8 (range, 3–18). Patients required administration of opioids (n = 91), oxygen (n = 36), and/or sedation (n = 61). Decision for palliative care was present in all medical records and do-not-resuscitate orders in 90/99 cases. Symptom prevalence was comparable between children and adolescents with ST and HM. A wish regarding the place of death had been expressed for 64 patients and could be respected in 42 cases. Death occurred in hospital for 75 patients. Conclusions: This study represents a large and informative cohort illustrating current pediatric palliative care approaches in pediatric oncology. End-of-life remains an active period of care requiring coordination of multiple care teams.

scholarly journals Race Does Not Influence Do-Not-Resuscitate Status or the Number or Timing of End-of-Life Care Discussions at a Pediatric Oncology Referral Center

2009 ◽  
Vol 12 (1) ◽  
pp. 71-76 ◽  
Author(s):  
Justin N. Baker ◽  
Shesh Rai ◽  
Wei Liu ◽  
Kumar Srivastava ◽  
Javier R. Kane ◽  
...  
Keyword(s):  
End Of Life ◽  
Pediatric Oncology ◽  
End Of Life Care ◽  
Life Care ◽  
Do Not Resuscitate ◽  
Referral Center

End-of-Life Care Preferences of Pediatric Patients With Cancer

2005 ◽  
Vol 23 (36) ◽  
pp. 9146-9154 ◽  
Author(s):  
Pamela S. Hinds ◽  
Donna Drew ◽  
Linda L. Oakes ◽  
Maryam Fouladi ◽  
Sheri L. Spunt ◽  
...  
Keyword(s):  
Children And Adolescents ◽  
End Of Life ◽  
Advanced Cancer ◽  
End Of Life Care ◽  
Pediatric Patients ◽  
Treatment Options ◽  
Life Care ◽  
Do Not Resuscitate ◽  
End Of Life Decision ◽  
Life Decision

Purpose The viewpoint of the terminally ill child at the time of an end-of-life decision has not been formally investigated. We identified the preferences of children and adolescents with advanced cancer about their end-of-life care and the factors that influenced their decisions. Patients and Methods Pediatric patients 10 or more years of age were interviewed within 7 days of participating in one of the following three end-of-life decisions: enrollment onto a phase I trial (n = 7), adoption of a do not resuscitate order (n = 5), or initiation of terminal care (n = 8). The patient, a parent, and the primary pediatric oncologist were interviewed separately by using open-ended interview questions. Results Twenty patients, aged 10 to 20 years (mean, 17 years and 4 months), with a refractory solid tumor (n = 12), brain tumor (n = 4), or leukemia (n = 4) participated. Eighteen patients (90%) accurately recalled all of their treatment options and identified their own death as a consequence of their decision. The factors that were most frequently identified included the following: for patients, caring about others (n = 19 patients); for parents, the child's preferences (n = 18 parents); and for physicians, the patient's prognosis and comorbid conditions (n = 14 physicians). Conclusion These children and adolescents with advanced cancer realized that they were involved in an end-of-life decision, understood the consequences of their decision, and were capable of participating in a complex decision process involving risks to themselves and others. The decision factors most frequently reported by patients were relationship based; this finding is contrary to existing developmental theories.

scholarly journals Investigating Key Factors Related to the Decision of a Do-Not-Resuscitate Consent

2021 ◽  
Vol 19 (1) ◽  
pp. 428
Author(s):  
Hui-Mei Lin ◽  
Chih-Kuang Liu ◽  
Yen-Chun Huang ◽  
Chieh-Wen Ho ◽  
Mingchih Chen
Keyword(s):  
Palliative Care ◽  
Logistic Regression ◽  
Regression Analysis ◽  
End Of Life ◽  
Logistic Regression Analysis ◽  
End Of Life Care ◽  
Life Care ◽  
Do Not Resuscitate ◽  
Palliative Care Consultation ◽  
Care Consultation

Background: The decision to sign a do-not-resuscitate (DNR) consent is critical for patients concerned about their end-of-life medical care. Taiwan’s National Health Insurance Administration (NHIA) introduced a family palliative care consultation fee to encourage family palliative care consultations; since its implementation, identifying which families require such consultations has become more important. In this study, the Taiwanese version of the Palliative Care Screening Tool (TW–PCST) was used to determine each patient’s degree of need for a family palliative care consultation. Objective: This study analyzed factors associated with signing DNR consents. The results may inform family palliative care consultations for families in need, thereby achieving a higher DNR consent rate and promoting the effective use of medical resources, including time, labor, and funding. Method: In this retrospective study, logistic regression analysis was conducted to determine which factors affected the DNR decisions of 2144 deceased patients (aged ≥ 20 years), whose records were collected from the Taipei City Hospital health information system from 1 January to 31 December 2018. Results: Among the 1730 patients with a DNR consent, 1298 (75.03%) received family palliative care consultations. The correlation between DNR consent and family palliative care consultations was statistically significant (p < 0.001). Through logistic regression analysis, we determined that participation in family palliative care consultation, TW–PCST score, type of ward, and length of stay were significant variables associated with DNR consent. Conclusions: This study determined that TW–PCST scores can be used as a measurement standard for the early identification of patients requiring family palliative care consultations. Family palliative care consultations provide opportunities for patients’ family members to participate in discussions about end-of-life care and DNR consent and provide patients and their families with accurate medical information regarding the end-of-life care decision-making process. The present results can serve as a reference to increase the proportion of patients willing to sign DNR consents and reduce the provision of ineffective life-prolonging medical treatment.

End-of-life care planning in patients with recurrent gynecologic cancers.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20648-e20648
Author(s):  
Nathan L Jones ◽  
Shelley L Galvin ◽  
Timothy J Vanderkwaak ◽  
David J. Hetzel ◽  
Cameron Blair Harkness ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Palliative Care ◽  
End Of Life ◽  
Median Duration ◽  
End Of Life Care ◽  
Gynecologic Oncology ◽  
Care Plan ◽  
Life Care ◽  
Do Not Resuscitate ◽  
Gynecologic Cancers

e20648 Background: Gynecologic oncologists and associates must provide appropriate, acceptable, and patient-centered end-of-life care. Most women with terminal gynecologic cancers do not have do-not-resuscitate (DNR) orders upon hospital admission and many do not receive effective palliative care. Our objective was to assess quality care indicators involving end-of-life care among gynecologic oncology patients treated at our institution. Methods: An IRB-approved retrospective chart review was performed on all patients with recurrent gynecologic cancers and terminal diagnoses who died from January 2009 through October 2012. Data included intervals to death from: diagnoses, DNR status, Hospice/Palliative Care Medicine (HPCM) involvement, and other factors related to end-of-life care. Chi-squared and discriminate analyses were utilized. Results: Complete data were available for 130 of 345 (37.7%) patients. Disease sites included cervix 28 (21.5%), uterine 37 (28.5%), ovarian 51(39.2%), and vaginal/vulvar 14 (10.8%). Median age at diagnosis and death was 63 and 65 years. Relative to death, diagnoses occurred at a median of 1.65 (0.05-32) years prior. 83 (63.8%) patients were DNR at their last hospitalization, 84(64.6%) had HPCM involvement, and 18(13.8%) had an advance care plan. When HPCM was involved, 83.3% were DNR as compared to 28.3% without involvement (p=0.0001). Patients were also significantly more likely to have DNR status with diagnosis of ovarian cancer and as the duration of time between diagnosis and death increased (p=0.0001). The provider obtaining DNR was most often faculty over residents or HPCM (60.2%, 27.7%, 12%). DNR status was declared by 57 (68.7%) patients and 26 (31.3%) power of attorneys. Median duration from DNR to death was 14 days (0-308) and median duration from HPCM involvement to death was 22 days (0-391). Conclusions: DNR status is associated with ovarian cancer, HPCM involvement, and increasing time from diagnosis to death. Earlier intervention from providers or HPCM could allow for greater patient autonomy and fewer interventions at end-of-life.

Improving the Quality of End-of-Life Care in Pediatric Oncology Patients Through the Early Implementation of Palliative Care

2017 ◽  
Vol 34 (6) ◽  
pp. 374-380 ◽  
Author(s):  
Lauren Ranallo
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
End Of Life ◽  
Pediatric Oncology ◽  
End Of Life Care ◽  
Terminal Phase ◽  
Clear Understanding ◽  
Life Care ◽  
Oncology Patients ◽  
Children With Cancer

Providing end-of-life care to children with cancer is most ideally achieved by initiating palliative care at the time of diagnosis, advocating for supportive care throughout the treatment trajectory, and implementing hospice care during the terminal phase. The guiding principles behind offering palliative care to pediatric oncology patients are the prioritization of providing holistic care and management of disease-based symptoms. Pediatric hematology-oncology nurses and clinicians have a unique responsibility to support the patient and family unit and foster a sense of hope, while also preparing the family for the prognosis and a challenging treatment trajectory that could result in the child’s death. In order to alleviate potential suffering the child may experience, there needs to be an emphasis on supportive care and symptom management. There are barriers to implementing palliative care for children with cancer, including the need to clarify the palliative care philosophy, parental acknowledgement and acceptance of a child’s disease and uncertain future, nursing awareness of services, perception of availability, and a shortage of research guidance. It is important for nurses and clinicians to have a clear understanding of the fundamentals of palliative and end-of-life care for pediatric oncology patients to receive the best care possible.

scholarly journals Palliative and End-of-Life Care for Patients With Hematologic Malignancies

2020 ◽  
Vol 38 (9) ◽  
pp. 944-953 ◽  
Author(s):  
Areej El-Jawahri ◽  
Ashley M. Nelson ◽  
Tamryn F. Gray ◽  
Stephanie J. Lee ◽  
Thomas W. LeBlanc
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hematologic Malignancies ◽  
Life Care ◽  
Care Needs ◽  
Patient Reported ◽  
Care Models

Hematologic malignancies are a heterogeneous group of diseases with unique illness trajectories, treatment paradigms, and potential for curability, which affect patients’ palliative and end-of-life care needs. Patients with hematologic malignancies endure immense physical and psychological symptoms because of both their illness and often intensive treatments that result in significant toxicities and adverse effects. Compared with patients with solid tumors, those with hematologic malignancies also experience high rates of hospitalizations, intensive care unit admissions, and in-hospital deaths and low rates of referral to hospice as well as shorter hospice length of stay. In addition, patients with hematologic malignancies harbor substantial misperceptions about treatment risks and benefits and frequently overestimate their prognosis. Even survivors of hematologic malignancies struggle with late effects, post-treatment complications, and post-traumatic stress symptoms that can significantly diminish their quality of life. Despite these substantial unmet needs, specialty palliative care services are infrequently consulted for the care of patients with hematologic malignancies. Several illness-specific, cultural, and system-based barriers to palliative care integration and optimal end-of-life care exist in this population. However, recent evidence has demonstrated the feasibility, acceptability, and efficacy of integrating palliative care to improve the quality of life and care of patients with hematologic malignancies and their caregivers. More research is needed to develop and test population-specific palliative and supportive care interventions to ensure generalizability and to define a sustainable clinical delivery model. Future work also should focus on identifying moderators and mediators of the effect of integrated palliative care models on patient-reported outcomes and on developing less resource-intensive integrated care models to address the diverse needs of this population.

scholarly journals Cultural and religious considerations in pediatric palliative care

2012 ◽  
Vol 11 (1) ◽  
pp. 47-67 ◽  
Author(s):  
Lori Wiener ◽  
Denice Grady McConnell ◽  
Lauren Latella ◽  
Erica Ludi
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Pediatric Oncology ◽  
End Of Life Care ◽  
Death And Dying ◽  
Care Quality ◽  
Pediatric Palliative Care ◽  
Life Care ◽  
Improvement Project

AbstractObjective:A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care.Method:Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine.Results:Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care.Significance of results:The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.

scholarly journals Trends in Pediatric Palliative Care Research (TPPCR) 2021; Issue #9: Commentary on Rapoport & Gupta

2021 ◽  
Author(s):  
Katherine Ketchum ◽  
- TPPCR
Keyword(s):  
Palliative Care ◽  
Children And Adolescents ◽  
End Of Life ◽  
End Of Life Care ◽  
Pediatric Palliative Care ◽  
Life Care ◽  
Care Research

This TPPCR commentary discusses the 2021 paper by Rapoport &amp; Gupta, “Children and adolescents with hematologic cancers deserve better end-of-life care” published in Cancer.

scholarly journals Honoring Preferences—The Consistency Between End-of-Life Care and a Veteran’s Goal for Comfort Care

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 752-752
Author(s):  
Joan Carpenter ◽  
Winifred Scott ◽  
Mary Ersek ◽  
Cari Levy ◽  
Jennifer Cohen ◽  
...  
Keyword(s):  
Palliative Care ◽  
Logistic Regression ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Multivariate Logistic Regression ◽  
Comfort Care ◽  
Lower Odds ◽  
Medicare Data ◽  
Life Sustaining Treatment

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).

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