Availability and Use of Palliative Care and End-of-Life Services for Pediatric Oncology Patients

2008 ◽  
Vol 26 (28) ◽  
pp. 4646-4650 ◽  
Author(s):  
Donna L. Johnston ◽  
Kim Nagel ◽  
Debra L. Friedman ◽  
Jane L. Meza ◽  
Craig A. Hurwitz ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Psychosocial Support ◽  
Life Care ◽  
Newly Diagnosed ◽  
Children With Cancer ◽  
Cancer Centers ◽  
Life Threatening ◽  
Support Team

PurposePalliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We sought to investigate the current practices and resources surrounding palliative and end-of-life care among participating institutions of the Children's Oncology Group (COG).MethodsA survey regarding practices and resources was developed by the COG palliative care subcommittee and was sent to all 232 institutions to complete for the calendar year 2005.ResultsThe survey was completed by 81% of the institutions. Per institution, there were a mean of 64.6 newly diagnosed patients and 17.7 patients experiencing relapse. A palliative care team was available in 58% of institutions, a pain service in 90%, a hospice in 60%, a psychosocial support team in 80%, and a bereavement program in 59%. Complementary and alternative medicine was available in 39% of institutions and in 95% of the COG institution's community. Most services, even when available, were not well used by patients.ConclusionDespite the well-established benefit of pediatric palliative care, it is only offered in 58% of COG institutions caring for children with cancer. In an era where the benefit of palliative care has been clearly established, this number should approach 100%. Efforts should be directed toward understanding barriers to provision of such services, so that they are available and well used at all childhood cancer centers.

Help Me Understand: Providing Palliative Care to Individuals With Serious Mental Illness

2021 ◽  
pp. 104990912110107
Author(s):  
Kate L. M. Hinrichs ◽  
Cindy B. Woolverton ◽  
Jordana L. Meyerson
Keyword(s):  
Mental Illness ◽  
Palliative Care ◽  
End Of Life ◽  
Serious Mental Illness ◽  
End Of Life Care ◽  
Psychosocial Support ◽  
Life Care ◽  
Case Examples ◽  
Increased Risk ◽  
Palliative Care Teams

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.

Palliative Care at the End of Life

2006 ◽  
Author(s):  
David J. Bearison
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Assisted Suicide ◽  
Psychosocial Support ◽  
Symptom Control ◽  
Life Care ◽  
Curative Intent ◽  
The Board Of Directors ◽  
Life Decisions

Consider the following advice given to parents whose children are dying in hospitals: “If your child has to die, he can die peacefully. You can make sure he is free of pain. You can make sure that everyone has a chance to say good-bye” (Hilden & Tobin, 2003, p. 3). To offer parents this kind of unconditional assurance (i.e., “You can make sure . . . ”) dismisses the confusing and disturbing realities of actually having to care for a child when it becomes increasingly apparent that curative intent is failing and staff begin to question how best to proceed. The complexity of symptom control in various clinical conditions sometimes precludes children from having peaceful deaths. However, when you read findings from the few palliative care studies that exist (and there are few that consider children as participants), issues of pain management and psychosocial support at the end of life do not seem to be so difficult to resolve. These findings promote ideas that, when satisfactory end-of-life care is not achieved, it is because mistakes were made, staff were inadequately trained, and children thereby were made to suffer unnecessarily. Such ways of thinking in turn lead bereft parents to feel guilty at not having empowered themselves to have taken greater control in the care of their child and to have done the right thing for their child. Although mistakes occur, staff can be better trained, and children might unnecessarily suffer, there are very few guarantees of a comfortable way of dying from medical causes. Most textbooks and studies about end-of-life care simply ignore the messy realities and uncertainties, particularly as they pertain to children and their families. The Report to the Board of Directors of the American Psychological Association from its Working Group on Assisted Suicide and End-of-Life Decisions (2003) raised a clarion call to document publicly what it is like, in practical day-by-day terms, for people who die in hospitals and how it affects endof- life decisions for the staff, patients, and families. We all prefer to die quickly, without protracted suffering and pain and without humiliation. Deaths during sleep are particularly preferred.

Integrating palliative care into end-of-life care for children with cancer

2016 ◽  
Vol 1 (4) ◽  
pp. 289-301
Author(s):  
Amanda L. Linz ◽  
Joanna A. Lyman ◽  
Melody J. Cunningham ◽  
Justin N. Baker
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Children With Cancer

scholarly journals End of Life Care and Family Issues and their Concerned at Palliative Care at Bhaktapur Cancer Hospital

2019 ◽  
Vol 4 (3) ◽  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Life Threatening Illness ◽  
Family Issues ◽  
Life Threatening ◽  
Advance Care ◽  
Life Threatening Event

palliative care also focuses on issues beyond end of life care such as care for those with cronic illness and potentially life threatening illness in remission. In addition end of life care focuses on a number of issues beyond the scope of palliative care such as advance care planning which should be under taken even by healthy and young persons who may experiance an unanticipated acute, life threatening event such as an accident.

Predictors of Specialized Pediatric Palliative Care Involvement and Impact on Patterns of End-of-Life Care in Children With Cancer

2018 ◽  
Vol 36 (8) ◽  
pp. 801-807 ◽  
Author(s):  
Kimberley Widger ◽  
Rinku Sutradhar ◽  
Adam Rapoport ◽  
Christina Vadeboncoeur ◽  
Shayna Zelcer ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Palliative Care ◽  
Intensive Care ◽  
Intensive Care Unit Admission ◽  
End Of Life ◽  
End Of Life Care ◽  
Pediatric Palliative Care ◽  
Life Care ◽  
Children With Cancer ◽  
The Impact

Purpose The impact of specialized pediatric palliative care (SPPC) teams on patterns of end-of-life care is unknown. We sought to determine (1) which children with cancer access SPPC and (2) the impact of accessing SPPC on the risk of experiencing high-intensity end-of-life care (intensive care unit admission, mechanical ventilation, or in-hospital death). Methods Using a provincial childhood cancer registry, we assembled a retrospective cohort of Ontario children with cancer who died between 2000 and 2012 and received care through pediatric institutions with an SPPC team. Patients were linked to population-based administrative data capturing inpatient, outpatient, and emergency visits. Children were classified as having SPPC, general palliative care, or no palliative care on the basis of SPPC clinical databases, physician billing codes, or inpatient diagnosis codes. Results Of the 572 children, 166 (29%) received care from an SPPC team for at least 30 days before death, and 100 (17.5%) received general palliative care. SPPC involvement was significantly less likely for children with hematologic cancers (OR, 0.3; 95% CI, 0.3 to 0.4), living in the lowest income areas (OR, 0.4; 95% CI, 0.2 to 0.8), and living further from the treatment center (OR, 0.5; 95% CI, 0.4 to 0.5). SPPC was associated with a five-fold decrease in odds of intensive care unit admission (OR, 0.2; 95% CI, 0.1 to 0.4), whereas general palliative care had no impact. Similar associations were seen with all secondary indicators. Conclusion When available, SPPC, but not general palliative care, is associated with lower intensity care at the end of life for children with cancer. However, access remains uneven. These results provide the strongest evidence to date supporting the creation of SPPC teams.

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.

Palliative Care for Extracorporeal Life Support: Insights From the National Inpatient Sample

2021 ◽  
pp. 000313482110242
Author(s):  
Catherine Williamson ◽  
Arjun Verma ◽  
Joseph Hadaya ◽  
Zachary Tran ◽  
Yas Sanaiha ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Resource Utilization ◽  
End Of Life Care ◽  
Life Support ◽  
Psychosocial Support ◽  
Extracorporeal Life Support ◽  
Life Care ◽  
National Inpatient Sample ◽  
Cardiopulmonary Support

Background Providing temporary cardiopulmonary support, extracorporeal membrane oxygenation (ECMO) carries a high risk of mortality. Palliative care (PC) may facilitate a patient-centered approach to end-of-life care in order to aid symptom management and provide psychosocial support to families. The present study aimed to identify factors associated with PC consultation and its impact on resource utilization in ECMO. Study Design All adults placed on ECMO at a PC capable center were identified in the 2006-2017 National Inpatient Sample. Indications for ECMO were identified using diagnosis codes and classified into postcardiotomy syndrome, respiratory failure, cardiogenic shock, mixed cardiopulmonary failure, and transplant related. Results Of 41 122 patients undergoing ECMO, 20 514 (49.9%) died in the same hospitalization. Of those, 3951 (19.3%) received a PC consult. Use of PC consults increased significantly from 5.5% in 2006 to 22.8% in 2017 (nptrend<.001). After multivariable risk adjustment, PC consults did not affect costs (β: –$7341, 95% CI: −22 572 to +7888) or duration of hospitalizations (β: −.37 days, 95% CI: −2.76 to +2.02). Conclusion Utilization of PC does not appear to negatively influence resource utilization among non-survivors of ECMO. Increased adaptation of PC in ECMO may improve end-of-life care, a factor that deserves future study.

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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