Characteristics of parental decision-making for children with advanced cancer who are offered enrollment in early-phase clinical trials: A systematic review

Abstract

Limited research is available on parental decision-making regarding their children’s participation in pediatric phase I oncology trials compared with the adult population. The objectives of this review were to describe: (1) the process of parental decision-making in this situation; (2) the optimal communication features physicians need when proposing inclusion in such trials; and (3) the place of the child/adolescent in the assent process. Thirty relevant studies meeting inclusion criteria were identified by searching five computerized databases (PubMed, Web of Science, Cairn, Psychinfo, EM Premium). Parental decision-making is a complex process based on hopeful expectations, multiple family considerations and the child’s previous cancer experience. It is highly impacted by the quality of physicians’ communication. A therapeutic alliance along with an empathetic attitude and a timely delivery of accurate information is essential. Due weight should be given to the voice of children or adolescents and their optimal level of involvement may be discussed depending on their age and maturity. They should be given age-adapted information in order to empower them to be rightfully and meaningfully involved in early-phase research. This review highlights the main gaps and necessary remedial actions to support an optimal patient care management in this situation. Physicians’ training in communication, structured interdisciplinary teamwork and early integration of palliative care are three key challenges which need to be implemented to actively engage in optimization strategies which would improve patient care and family support when offering enrollment in a phase I trial.     

Influence of early phase clinical trial enrollment on patterns of end‐of‐life care for children with advanced cancer

We conducted a retrospective cohort study of 125 pediatric oncology patients who died in 2010–2014 to explore how healthcare utilization, pediatric palliative care (PPC) receipt, and end‐of‐life care (EOLC) differed between patients enrolled in early phase clinical trials (EP) and those not enrolled (NEP). Baseline characteristics and healthcare utilization did not significantly differ between groups. EP patients received PPC consultation closer to death than NEP patients (median days before death = 58 [interquartile range = 16–84] vs. 85 [32–173]; P = 0.04). Our findings suggest that early phase trial enrollment does not substantially alter EOLC for children with advanced cancer but may contribute to later PPC engagement. Future studies should definitively assess the relationship between trial enrollment and PPC timing.     

Out-patient palliative care of children with cancer and their families

Pediatric palliative care is still in its beginning. Most children with life-threatening disorders succumb with incomplete symptom control under in-patient conditions. Due to the limited number of patients and large hospital-home distances the realization of out-patient concepts of palliative care especially for children and adolescents with cancer is purposeful and beneficial. In a pilot project such an a aforementioned concept of pediatric palliative care proved successfully working despite insufficient conditions. Guidelines of pediatric palliative care are to be defined at short notice in order to ascertain autonomy and mobility of patients aiming at highest possible quality of life. The recently initiated program of integrating ambulatory and in-patient care within the regulations set forth in Germany's last health care system reform offers the chance of palliative home care of children in their terminal phase of life.     

The current status of palliative care in Turkey: a nurse's perspective

There has been a growing awareness for the need to develop a palliative care service in Turkey. But a significant proportion of the Turkey population still does not have access to palliative care. The majority of cancer patients are treated in university hospitals that have support units with pain specialists and medical oncologists. Some significant barriers to the development of palliative care nursing were identified: 1) Lack of palliative care education and training programs 2) Lack of certification for Palliative Care Nursing 3) There is very limited research about palliative care nursing 4) lack of public awareness and 4) shortage of nursing staff 5) the limited availability of/knowledge about opioid analgesics. Nurses have a unique and primary responsibility for advocating for the right of patients to maintain their quality of life for as long as possible and to experience a dignified and peaceful death. Continued efforts are needed to overcome these barriers to successful implementation of palliative and end-of-life care for patients with cancer.     

A palliative care initiative in Dokuz Eylul University Hospital

Turkey is among the countries with only "capacity building activity" in terms of palliative care development according to the mapping levels reported by the International Observatory on End of Life Care (http://www.eolc-observatory.net/global/pdf/world_map.pdf). Palliative care units are lacking even in major hospitals. Although some medical oncologists and pain specialists have been providing pain control and symptom relief to some extend, all these interventions remain a fragmented approach to care since there are no palliative care programs. Establishing palliative care services should be a priority in the development of comprehensive cancer care, particularly in a country where more than 60% of the cancer patients present with advanced stage disease. Like all the other university hospitals in the country, palliative care services have not been established so far in Dokuz Eylul University Hospital for several reasons although almost all the modern cancer treatment modalities have been provided to cancer patients. A group of health professionals have recently started a palliative care initiative in the hospital with an aim to raise awareness and to implement basic palliative care interventions to the current cancer care. This paper aims to tell the story of how this initiative get started and which step were taken so far.     

Palliative care situation in Palestinian Authority

Palliative care is a very new concept in Palestine. In fact, it is still not applicable or provided within the Palestinian health care system. However, Al-Sadeel Society had organized a one day workshop in Bethlehem on November 2008 for the health professionals from the governmental and non-governmental sectors to initiate and introduce the idea of palliative care for the first time in Palestine. The general population of Palestine is approximately 2.4 millions (2007), with a life expectancy of 74.3 years of age, the death rate is 3.7 per 1000 population, having 8,910 deaths a year. Deaths due to cancer were 2,305 in five years (1999-2003), where 5,542 new cases were newly diagnosed in the same period. Health services available for cancer patients are hospital units either in patient or day care units. According to the ministry of health (MOH) statistics there are 75 beds in oncology departments in MOH hospitals; represent 2.7% of the total number of beds available, and 60 beds in daily care departments with an occupancy rate at 231.8%. There is no hospice or bereavement follow up care available for patients or their families. Despite the fact that the Palestinian culture is one of the cultures that respect and care for the elderly, but at the end of life, when the load of symptoms is high, most of the patient are care for at hospitals, and usually dye there, because the families are not able to care for their patients, and as there is no system for home care available for the Palestinian patients, and if it is available it is available in limited places and on private bases that are expensive and not affordable to the majority of patients, gross domestic product (GPD) per capita= 1,100 as 2007 estimates). We conducted a needs assessment survey within the only four facilities that provide care for the oncology patients in the West Bank and were filled by the direct health care providers. The results were expressing the fact that there is no palliative care service available for cancer patients or their families, absence of organizations strategic planning for palliative care, No presence of educational resources for palliative care, No presence of communication or consultation to the clergy man, Absence of bereavement support group, no active follow up for the patient and the family, no standards for palliative care service or training programs in palliative care, no home care service for palliative care, absence of community awareness for palliative care And Absence of national standard for palliative care. The recommendations that we can conclude, depending on the needs assessment that we did, and according to the recommendations that come up through the workshop that was organized by Al-Sadeel Society and was attended by key personnel from the Palestinian MOH who summarized the conclusion, are as follows: 1.?The need for better quality care for the cancer patient.2.?The need for training of health professionals in palliative care.3.?The importance of networking and cooperation between the national NGO's and the MOH.4.?The need for public awareness regarding the early detection for cancer especially breast cancer.5.?The need for national policy and standards for palliative care and opioids legislations.6.?The importance of base line data and research. 7.?The need for interdisciplinary team work in the issue of cancer. 8.?To involve palliative care education within the curriculum of schools of health professions.     

The National Palliative Care Research Center and the Center to Advance Palliative Care: a partnership to improve care for persons with serious illness and their families

The elimination of suffering and the cure of disease are the fundamental goals of medicine. While medical advances have transformed previously fatal conditions such as cancer and heart disease into illnesses that people can live with for many years, they have not been accompanied by corresponding improvements in the quality of life for these patients and their families. Living with a serious illness should not mean living in pain or experiencing symptoms like shortness of breath, nausea, or fatigue. Yet, multiple studies over the past decade suggest that medical care for patients with advanced illness is characterized by inadequately treated physical distress; fragmented care systems; poor communication between doctors, patients, and families; and enormous strains on family caregiver and support systems. Palliative care is interdisciplinary care focused on relief of pain and other symptoms and support for best possible quality of life for patients with serious illness, and their families. It is appropriate at the point of diagnosis of a serious illness. It goes beyond hospice care to offer patients and their families treatments focused on improving quality of life while they are receiving life-prolonging and curative treatments. Palliative care programs have been shown to reduce symptoms, improve doctor-patient-family communication and satisfaction with care, as well as enhance the efficiency and effectiveness of hospital services. In the last 5 years alone the number of palliative care programs has more than doubled. This growth is in response to the increasing numbers and needs of Americans living with serious, complex and chronic illnesses, and the realities of the care responsibilities faced by their families. In order to ensure that all persons with serious illness and their families receive the quality of care they deserve, palliative care must become an integral part of the U.S. healthcare landscape. Specifically, persons facing serious illness and their families must know to request palliative care, medical professionals must have the knowledge and skills to provide palliative care, and hospitals and other healthcare institutions must be equipped to deliver and support palliative care services. The Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC) are accomplishing this three-part mission by working in partnership to: 1) Develop research to serve as the knowledge base for quality clinical care and the foundation on which to build palliative care programs and systems; 2) Disseminate this knowledge to patients, families, professionals, and institutions throughout the United States and ensure that it is integrated within mainstream healthcare; and 3) Influence and collaborate with policy makers , regulatory bodies, and federal funding agencies to ensure that the healthcare infrastructure supports the continued growth and development of palliative care.     

Relapsed hepatoblastoma

Successful treatment of recurrent hepatoblastoma (HB) relies largely on surgical resection. When tumors are responsive, chemotherapy can be used to render patients resectable. Various chemotherapeutic regimens studied in small numbers of patients on phase I/II trials have shown few responses. The best available data indicate that doxorubicin, if not given during intial treatment, and irinotecan are the most active agents in recurrent HB. Stem cell transplantation and radiation therapy have been reported in several patients with unclear successes. Advances in therapy for relapsed patients require concentrating enrollment in one or two phase I/II trials utilizing agents with promising preclinical data. Pediatr Blood Cancer 2012; 59: 813–817. © 2012 Wiley Periodicals, Inc.     

Development of palliative-care services in a developing country: Pakistan

Palliative care services are poorly developed in most resource-poor countries. With the increase in the number of cancer cases being diagnosed in these countries, most of whom present in advanced stages, an urgent need for palliative care is emerging. Pakistan is an example of a resource-poor country where palliative care services are in the initial phase of development.     

Infant mortality in a third level paediatric hospital. therapeutic effort limitation, clinical-pathological agreement and diagnostic accuracy

ObjectiveTo study infant and child mortality in a third level children's hospital treating highly complex patients.Patients and methodsAll children dying in the period 2007- 2009 at La Paz Children's Hospital were evaluated. Epidemiological data, autopsy rate, clinical and autopsy diagnoses and their correspondence and the number of, patients with precise final diagnoses were analysed. Therapeutic effort limitation and palliative care were also evaluated as well as if the final result was expected according to the initial disease or clinical condition of the patients. All the variables were prospectively defined at the start of the study period.ResultsA total of 253 cases (6.08‰ admissions) were analysed. The two leading causes of death were disorders related to prematurity and low birth weight, and haematology oncology malignant diseases. Most patients (87%) died in an intensive care unit (neonatal or paediatric). During the study period 134 autopsies (53%) were performed, and new clinically significant findings were observed in 12 of these (7.8%) but in only one case the treatment could have possibly modified the prognosis (class I discrepancy). Therapeutic effort limitation and palliative care were implemented in 41.9%. Death was initially expected in 83.9% of cases. An accurate final diagnosis was defined in 92%, and the aetiology of the disease was considered to be identified in 86.4% of all deaths.ConclusionsHospital mortality analysis is useful to evaluate the quality of the paediatric care and to detect adverse results that could be corrected. Paediatric autopsy continues to provide clinically significant data for paediatricians and families. Therapeutic effort limitation and palliative care is increasingly applied in paediatric end of life care. The number of infants and children dying without a final aetiological diagnosis is still considerably high.     

The barriers to and evidence for palliative care

It is undeniable that there are barriers to providing palliative care. Recent research suggests there is value in palliative care for patients, families, and those providing this care. Specifically, the research suggests that the earlier a patient receives palliative care, the better outcomes they will receive. This article will serve 2 important purposes. First, this article will look at some of the barriers that sometimes prevent offering adequate palliative care to patient and families when the care is needed most. Second, this article will present results in a simplistic manner from actual research studies, which helps make the case through evidence of the value of palliative and quality end of life care.     

Evaluation of a pediatric palliative care educational workshop for oncology fellows

BACKGROUND: Recent efforts have focused on improving pediatric palliative care to relieve physical and psychological suffering throughout the course of illness, as well as to improve care at the end-of-life (EOL). One area of attention has been medical training, as healthcare providers have often reported feeling ill-equipped to manage EOL issues. As a pilot study, we developed and evaluated a daylong educational workshop on pediatric palliative care for oncology fellows. PROCEDURE: Fellows (N = 32) from 20 hospitals participated in one of two workshops covering palliative care topics, such as pain/symptom management, communication, ethics, and bereavement. Training, knowledge, behavior, and attitudes regarding pediatric palliative care were assessed before the workshop, and knowledge was re-assessed immediately afterwards. RESULTS: Fellows reported a general lack of training in EOL care, and only 41% rated their education as at least "somewhat" adequate. Colleagues and personal experience were more often sources on EOL care, rather than formal classes or textbooks. Although fellows reported open attitudes toward palliative care, such as involving adolescents in decision-making, only half felt comfortable in the presence of a dying person. Fewer than half felt comfortable providing EOL care, managing families' expectations, or knowledgeable enough to discuss hospice with patients/families. Following the workshop, knowledge of palliative care increased significantly from 75 to 85% correct. CONCLUSIONS: Fellows reported open beliefs about palliative care, but acknowledged weaknesses in their training and level of competence. The workshop showed efficacy in improving knowledge, but additional research is needed to evaluate larger educational initiatives and their long-term impact on clinical services and family satisfaction.     

Palliative care and the cancer patient: current state and state of the art

Comprehensive cancer care requires the integration of palliative care practices and principles across the trajectory of the cancer experience. It complements the treatment of curable disease and may be the sole focus of care for those patients with advanced incurable disease. As the incidence of cancer increases worldwide and the burden of cancer rises, especially in low and middle resource countries, the need for palliative care is greater than ever before. There are numerous barriers to the provision of integrated care, including the ongoing misconception that palliative care is end-of-life care, the "cure-care dichotomy," inadequate training of health professionals and lack of resources. This article reviews the essential elements of comprehensive cancer care and the challenges to providing integrated cancer and palliative care to patients world-wide.     

An der Grenze des Lebens

Pediatric palliative care has become an important component of pediatrics. Children with life-limiting or life-threatening conditions and their families need comprehensive care. The prevalence of relevant diseases in Europe is 120–160 out of 100,000 children and adolescents. Pediatric palliative care is different to that of adults due to the completely different groups of patients and needs. Children with oncological diseases are in the minority and rare diseases and chronic conditions are much more common. In this context four different groups of patients can be defined. Pediatric palliative care starts at the time of diagnosis and can last for many years. It is multiprofessional and must include the whole family. The aim is to obtain the best quality of life for the child and its family for as long as possible. Care begins in parallel to possible curative therapy. European standards of pediatric palliative care are defined. The concept of graded care includes a basic level of care and specialized care by trained teams so that a child and family friendly care can be provided.     

The current status of palliative care in Cyprus: has it improved in the last years?

The oncology and palliative care services in Cyprus were reviewed looking especially on changes that occurred recently. Although there are encouraging signs in the management of palliative care patients, there is still room for improvement. Especially efforts should be made to improve communication between hospitals and palliative care organizations. The Ministry of Health should also take the initiative to get all palliative care organizations to work together under an official body and integrate palliative care into mainstream health service provision and education.     

The Madison Clinic: Evaluation of a collaborative outpatient paediatric palliative care clinic

BACKGROUND

A multidisciplinary outpatient clinic at a tertiary care children’s hospital supported and staffed by a children’s hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format.

METHOD

The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis.

RESULTS

In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic.

DISCUSSION

A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program.     

Estudio retrospectivo de pacientes derivados de cuidados intensivos pediátricos a cuidados paliativos: por qué y para qué

Introduction

The creation of paediatric palliative care units (PPCU) could optimise the management of children with palliative focus after admission to a paediatric intensive care unit (PICU). This study describes the clinical and epidemiological characteristics of children referred from PICU to the PPCU of the Autonomous Community of Madrid (CAM). The overall treatment, relapses, re-admissions, and deaths, if occurred, are described.

Pediatric End-of-Life Issues and Palliative Care

Palliative care, a comprehensive approach to treating the physical, psychosocial, and spiritual needs of patients facing life-limiting illnesses and their families, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid ED staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care.     

Care until the end of life

When there is no more hope of a cure during a child's treatment, the curative period makes way for a palliative phase through to the last moments of the child's life. This phase is both difficult and fundamental for the child and his/her family, as well as for the caregivers, who must continue to provide care without any hope of curing the child. This phase determines how the period of mourning which follows the loss of a loved one is experienced, particularly for the family.