scholarly journals Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Children ◽  
2018 ◽  
Vol 5 (9) ◽  
pp. 120 ◽  
Author(s):  
Stefan Friedrichsdorf ◽  
Eduardo Bruera
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Symptom Control ◽  
Palliative Care Service ◽  
The United States ◽  
Pediatric Palliative Care ◽  
Emotional Impact ◽  
Optimal Care ◽  
Comfort Care ◽  
Serious Illness

Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation.

Pain treatment and prevention in pediatric palliative care

2021 ◽  
pp. 292-311
Author(s):  
Stefan J. Friedrichsdorf
Keyword(s):  
Chronic Pain ◽  
Palliative Care ◽  
Visceral Pain ◽  
Pain Treatment ◽  
Symptom Control ◽  
Pediatric Palliative Care ◽  
Serious Illness ◽  
Psychological Therapies ◽  
Total Pain ◽  
The Usa

Annually, at least 21 million children could benefit from pediatric palliative care (PPC) and 8 million would need specialized PPC services. In the USA alone, more than 40,000 children aged 0–19 years die annually; 55% of them are infants younger than 1 year of age. Pain is common, under-recognized, and under-treated, especially in children with progressive neurodegenerative and chromosomal conditions with central nervous system impairment. Unrelieved pain is also common in children with advanced serious illness during the end-of-life period, and, when treated, the therapy is commonly ineffective. Treating pain in children with serious illness is not profoundly different than advanced pain management for children with complex acute conditions or diseases such as major trauma, burns, cancer, or those with sickle cell disease in vaso-occlusive crisis. It is important to appreciate that children with serious illness are more likely to simultaneously suffer from acute pain, neuropathic pain, visceral pain, total pain, and chronic pain. As such, multimodal analgesic (i.e., multiple agents, interventions, rehabilitation, psychological modalities, and integrative (“nonpharmacologic,” e.g., behavioral, physiological, and psychological) therapies that act synergistically for more effective pediatric pain and symptom control with fewer side effects than a single analgesic or modality must be employed. Opioids, such as morphine, fentanyl, hydromorphone, oxycodone, and methadone, remain the mainstay medications to effectively treat pain in children with serious illness. However, medications alone are often insufficient for optimal pain control. In fact, the paradigm shift away from “medications only” toward offering “multimodal analgesia” to children with serious illness experiencing pain, including addressing chronic pain/primary pain disorders and total pain has become a “game changer” in advancing PPC to ensure that patients can live as long as possible, as well as possible.

Easing of Suffering in Children With Cancer at the End of Life: Is Care Changing?

2008 ◽  
Vol 26 (10) ◽  
pp. 1717-1723 ◽  
Author(s):  
Joanne Wolfe ◽  
Jim F. Hammel ◽  
Kelly E. Edwards ◽  
Janet Duncan ◽  
Michael Comeau ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Geometric Mean ◽  
Symptom Control ◽  
Palliative Care Service ◽  
Do Not Resuscitate ◽  
Children With Cancer ◽  
Adjusted Risk

Purpose In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life. Methods Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort). Results In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002). Conclusion Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.

Development of a State-Wide Pediatric Palliative Care Service in Australia: Referral and Outcomes over Two Years

2014 ◽  
Vol 17 (3) ◽  
pp. 288-295 ◽  
Author(s):  
Anthony Herbert ◽  
Natalie Bradford ◽  
Leigh Donovan ◽  
Lee-Anne Pedersen ◽  
Helen Irving
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Pediatric Palliative Care

The outcome of outpatient palliative care service at Yonsei Cancer Center, a tertiary cancer center in Korea.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 131-131
Author(s):  
Si Won Lee ◽  
Hye Jin Choi
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Group Performance ◽  
Care Service ◽  
Symptom Control ◽  
Palliative Care Service ◽  
Cancer Center ◽  
Anticancer Treatment ◽  
Tertiary Cancer Center

131 Background: The importance of palliative care in cancer patients continues to be emphasized and studies are proving its importance. Several studies proved the improvement of quality of life in advanced cancer patients. The efficacy of symptom control based on outpatient palliative care service has not yet been reported in Korea. The objective of this study is to review the outcome of outpatient palliative care service at Yonsei Cancer Center, a tertiary cancer center in Korea. Methods: We retrospectively reviewed 155 cancer patients who used outpatient clinic at Yonsei Cancer Center in Korea between April 2014 and December 2014. Symptom severity was measured by modified Korean version of Edmonton Symptom Assessment System. Twelve symptoms were assessed: pain, fatigue, nausea, depression, anxiety, drowsiness, dyspnea, sleep disorder, anorexia, constipation, wellbeing, financial distress. Higher score means worse symptom. ESAS scores at baseline and follow-up assessments were analyzed. Results: The 155 patients had following characteristics: female 52.3%, median age 65 years (range 58-75), Hepatobiliary-pancreatic cancer and lung cancer patients accounted for the largest portion (n = 37, 23.9%; n = 36, 23.2% respectively). Most patients were Eastern Cooperative Oncology Group performance status 1 (n = 28, 18.1%) or 2 (n = 24, 15.5%). Ninety-two (59.4%) patients were referred to the palliative care team after anti-cancer treatments were all finished. Overall the symptoms did not change significantly from baseline to 2 consecutive follow up assessment except anorexia ( p value = 0.0195). Patients who were on active anticancer treatment had tendency of higher ESAS score than those finished with the anticancer treatment. However, all symptoms except nausea were not statistically significant. Conclusions: Most patients in this study did not have severe symptom scores that would show the differences of the symptom changes. Nevertheless, although not statistically significant, we found that patients on active anticancer treatment had higher symptom burden than those who were finished with the anticancer treatment. More meticulous symptom management is necessary to improve the symptom control.

scholarly journals The First Step to Initiate Pediatric Palliative Care: Identify Patient Needs and Cooperation of Medical Staff

Healthcare ◽  
2022 ◽  
Vol 10 (1) ◽  
pp. 127
Author(s):  
Su Hyun Bae ◽  
Yeo Hyang Kim
Keyword(s):  
Palliative Care ◽  
Medical Staff ◽  
Care Service ◽  
Care Center ◽  
Palliative Care Service ◽  
Disease Diagnosis ◽  
Pediatric Palliative Care ◽  
Number Of Patients ◽  
Palliative Care Services ◽  
Limiting Condition

Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is still inadequate due to a lack of indicators. This study aimed to find considerations in the process of initiating palliative care services. The general and clinical characteristics of 181 patients aged less than 24 years who were registered at the pediatric palliative care center from January 2019 to August 2021 were evaluated. Life-limiting condition group 1 had the largest number of patients. The primary need for palliative care was psychological and emotional support, followed by information sharing and help in communication with the medical staff in decision-making processes. Seventy-two patients were technologically dependent, with one to four technical supports for each patient. The registration of patients with cancer increased with time, and the time from disease diagnosis to consultation for pediatric palliative care service was significantly reduced. In conclusion, before starting pediatric palliative care, it is necessary to understand the needs of patients and their families and to cooperate with medical staff.

A retrospective review of patients with hematological malignancy referred to an inpatient palliative care service in a tertiary hospital.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 117-117
Author(s):  
Yee Choon Meng ◽  
Mervyn Yong Hwang Koh ◽  
Zi Yan Chiam ◽  
Jun Jun Zhang ◽  
Yin Mei, Allyn Hum
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Retrospective Review ◽  
Hematological Malignancies ◽  
Hematological Malignancy ◽  
Care Service ◽  
Symptom Control ◽  
Palliative Care Service ◽  
Solid Organ ◽  
Care Needs

117 Background: Patients with hematological malignancies are referred to palliative care service later and less often than patients with solid organ tumor. However, there are no data in Singapore, on the referral pattern among patients with hematological malignancy. The objective of the study is to identify the characteristics and outcomes of patients with hematological malignancy referred to an In-patient Palliative Care Service (PCS). Methods: We performed a retrospective review of all patients with hematological malignancies referred to the in-patient PCS from December 2015 to December 2016. Basic demographics and outcomes of patients’ admission were collected as per protocol. Results: 53 patients were included in the study. 27 (50.9%) patients were male, 49 (92.5%) were ≥60 years old, 20 (37.7%) were receiving cancer treatment at the point of referral, and 24 (45.3%) had Palliative Performance Scale (PPS) ≤ 40%. The most common hematological diagnosis was lymphoma (N = 26, 49.1%). The top 3 reasons for referral were symptom management (N = 44; 83%), advance disease (N = 24; 45.3% and end-of-life discussion (N = 15, 28.3%). Among 44 patients referred for symptom control, 18 (40.9%) had pain, 12 (27.3%) had dyspnoea, 8 (18.2%) had confusion and 6 (13.6%) had fatigue or drowsiness. 30 patients (56.6%) died during the admission. Among 30 patients who died, the mean time from referral to death was 9.8 days; 16 (53.3%) died within 1 week from referral, 9 (30%) died between 1-4 weeks from referral and 5 (16.7%) died beyond 4 weeks after referral.5 patients (9.4%) had Advance Care Planning completed. Conclusions: Our review showed that patients with hematological malignancies are referred late in their disease trajectory and have high Palliative Care needs. Hence, collaborative effort to facilitate timely referral of patients with hematological malignancy to PCS will optimize end-of-life care.

Developing a Pediatric Palliative Care Service in a Large Urban Hospital: Challenges, Lessons, and Successes

2013 ◽  
Vol 16 (4) ◽  
pp. 342-348 ◽  
Author(s):  
Emily S. Edlynn ◽  
Sabrina Derrington ◽  
Helene Morgan ◽  
Jennifer Murray ◽  
Beatriz Ornelas ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Pediatric Palliative Care ◽  
Urban Hospital
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