Early Introduction Of Palliative Care Research Articles

Charlie Gard: How Did Things Go Wrong?

We examine the discussions generated to date by the Charlie Gard case, as well as the events of the case itself, in order to examine lessons for providers dealing with similar situations in the future. Publications regarding the Gard case are relatively few and focus primarily on the ethical and legal issues that arise when involving the court system in complex medical decision-making and potential limits to parental authority. Some publications have also addressed the subject of experimental therapies, especially from the perspective of potential harms, suffering, and cost. We suggest early introduction of palliative care and careful attention to communication might reduce conflict and improve satisfaction for all involved parties. Likewise, we suggest limiting court system to truly extraordinary circumstances; all efforts should be made to avoid legal action and to honor and respect parental authority.

Can the Early Introduction of Palliative Care Alleviate the Disease Burden in Adolescents and Young Adults With Cancer?

As a result of oncology research and technology, great improvements in cancer treatment and survival have occurred in the past 2 decades. However, adolescents and young adults (AYAs) who received a diagnosis of cancer have not witnessed the same improvements in survival as children or older adults. Adolescent and young adult oncology is an emerging field that focuses on the physical and psychosocial treatment of patients between the ages of 15 and 39 years. Adolescent and young adult oncology patients experience high burden of psychological distress, in addition to physical symptoms, which affect their quality of life. Cancer is the leading disease-related cause of death in AYAs; it is imperative that healthcare professionals work to improve the high morbidity and mortality within this age group. Adolescent and young adult oncology patients would benefit from earlier implementation of palliative care. Incorporating palliative care alongside early cancer treatment regimens is beneficial in helping to relieve psychosocial and symptom burden, increase quality of life, and identify the patient's goals of care throughout the treatment process. Initiating palliative care at the beginning of treatment helps build therapeutic relationships between the patient and caregiver. When there are changes in goals of care, having an established relationship with palliative care eases the transition between active disease treatment and end-of-life care. Despite research indicating benefits to patients and increased growth of clinical and academic palliative care programs, many barriers still exist in incorporating palliative care alongside standard oncology care. Palliative care is not routinely incorporated into AYA oncology despite the high symptom burden and unique psychosocial needs of this population. This literature review discusses unique challenges that AYAs face throughout the diagnosis of cancer, identifies the unmet needs of this population, and advocates for an earlier introduction of palliative care throughout the treatment process.

A Study to Assess the Feasibility of Introducing Early Palliative Care in Ambulatory Patients with Advanced Lung Cancer.

Purpose:Early palliative care is beneficial in advanced lung cancer patients. We aimed to assess the feasibility of introducing early palliative care in ambulatory advanced lung cancer patients in an Indian tertiary cancer center.Methodology:In a longitudinal, single–arm, and single-center study, fifty patients were recruited and followed up every 3–4 weeks for 6 months, measuring the symptom burden using Edmonton Symptom Assessment Scale (ESAS) and quality of life (QoL) with European Organization for Research and Treatment of Cancer-QoL tools. The primary end point of feasibility was that at least 60% of the patients should complete 50% of the planned palliative care visits and over 50% of the patients should complete QoL questionnaires. Analysis was done using Statistical Package for the Social Sciences version 20.Results:Twenty-four of fifty patients (48%) completed the planned follow-up visits. All patients completed the questionnaires at baseline and 31 (62%) at their follow-up visits. The patients’ main reasons for not following up in the hospital palliative care clinic were logistics and fatigue. Tiredness, pain, and appetite loss were the highest rated symptoms at baseline (ESAS scores 3, 2.2, and 2.1, respectively). Improvement in pain and anxiety scores at follow-up visits 1 and 2 was significant (P < 0.05). Scores on QoL functioning scales improved during the follow-up period.Conclusions:We did not meet the feasibility criteria for the introduction of early palliative care in our advanced lung cancer patients in a resource-limited country.

Managing relapsed myeloma: The views of patients, nurses and doctors.

The study aim was to explore whether there were differing opinions on the current management of relapsed myeloma between patients and health care professionals, a topic which has never been explored previously in the literature. This qualitative study was undertaken at a regional specialist haematology centre in Ireland. Individual interviews were undertaken with multiple myeloma patients with relapsed disease (n=8). Three focus groups were also undertaken with haematology nurse specialists, haematology doctors and staff nurses working in a haematology day unit (n=17). The analysis of interview data was guided by thematic analysis. Two central themes were interpreted from the interview data: 'shared decision making with the expert patient' and 'an unpredictable disease journey'. Patients felt well informed regarding their illness but faced difficult decisions at times. Nurses and doctors stressed the importance of the early introduction of palliative care but acknowledged difficulties due to myeloma being unpredictable. Managing relapsed myeloma was fraught with complex issues. Patients developed alternative ways of coping with their disease including adopting the role of the 'expert patient', continuing to battle their disease and living with a chronic illness. Health care professionals struggle to manage the realities of a disease where the prognosis is improving. Uncertainty around patients' care and difficulties such as when 'enough is enough', continue to cause challenges. The transition to a chronic disease offers hope to patients and an opportunity for health care professionals to implement holistic care plans encouraging patients to be self proactive.

Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions: a pilot study.

Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning. Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility. Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation. Initiating palliative care services in the outpatient primary care setting is logistically challenging but increases access to palliative care for children with complex chronic medical conditions and improves palliative care knowledge and comfort for PCPs.

Upstream Adventures: Initial Results from a Clinical Trial of Early Palliative Care, Delivered in the Community by Trained Lay Persons (FR411)

•Describe the role of trained lay persons in delivering palliative care.•Identify the key outcomes that result from early introduction of palliative care. Beginning in 2012, a large Minnesota healthcare system designed a late life supportive care model to address the question: Will whole-person support for patients with serious illness and their families result in better quality-of-life and care experience, and will it improve utilization and access to palliative care and hospice? The intervention (LifeCourse) is an in-home approach, structured on the domains and recommended practices of palliative care. LifeCourse is delivered primarily by trained lay persons (care guides) supported by a clinical team. It is directed to persons with heart disease, cancer, and dementia who are living with serious illness and may be in the last 3 years of life. About 1200 individuals, including participants, family members, and comparison patients and families, are enrolled to date. All are surveyed quarterly. We will describe the hiring, training, and workflows that allow care guides to address National Quality Forum-identified best practices. We will describe their role in recognizing issues upstream, communicating goals of care, and empowering patients and families to find solutions to their needs. Early results of the intervention were analyzed using a mixed methods study, comparing LifeCourse to usual care. For LifeCourse patients and families, several aspects of quality of life and care experience fared better than for comparison patients and families. Hospital days in the last 6 months of life were lower for LifeCourse patients, and emergency department visits were significantly reduced. LifeCourse patients were more likely to be referred to inpatient palliative care and hospice, and they spent about twice as many days under hospice care. Total cost of care data was available from a subset of patients. These individuals were statistically matched to similar-spending controls and followed over time. Overall spending was lower for the LifeCourse patients. This intervention shows promise in extending the reach of palliative care.

Integrating early palliative care (EPC) in the management of lung cancer: The role of the thoracic oncologist.

Early introduction of palliative care in the management of patients with metastatic lung cancer is recommended since it improves quality of life and improves survival rates. In many hospitals the focus of palliative teams is often on terminal care due to limited resources. How is Early palliative care (EPC) in this setting implemented in daily oncologic care? It seems obvious that thoracic oncologists will have to become involved in EPC for lung cancer patients. In this review we want to determine the assignments for the thoracic oncologist in EPC and to give some practical tools how we started EPC in collaboration with the palliative team.

Role of Scaffold Proteins in Functional Alteration of Small Intestinal P-glycoprotein by Anti-cancer Drugs

Since there is accumulating evidence to indicate that introduction of early palliative care for cancer patients may improved their quality of life or survival rates, the number of patients receiving pain relief by narcotic analgesics in conjunction with chemotherapy is predicted to increase. Therefore to provide effective combination treatments it is important to evaluate basic evidence regarding drug-drug interactions between anti-cancer drugs and narcotics. We have focused on P-glycoprotein (P-gp), a drug efflux transporter, in small intestine where the absorption process of drugs administered via oral route is greatly limited. Then, we revealed that repeated oral treatment with etoposide (ETP) increases P-gp levels in the small intestinal membrane via RhoA/ROCK activation, leading to decrease in analgesia of morphine, a P-gp substrate drug, with alteration of its disposition after oral administration. Furthermore, we found that activation of ezrin/radixin/moesin (ERM), scaffold proteins that regulate plasma membrane localization or function of certain plasma membrane proteins such as P-gp, are involved in this mechanism. Of particular interest is that among ERM proteins, radixin may contribute, at least in part, to increased expression of P-gp in the small intestine under repeated oral treatment with ETP.

Early introduction of palliative care for children with solid tumors.

23 Background: Patients with solid tumors (ST) have the highest rate of relapse and mortality among pediatric oncology. Many patients suffer from acute and chronic therapy-related toxicity that have major implications in the patients’ lives. An early introduction of palliative care consultation (PCC) for patients with ST was implemented in 2012. Objectives: To assess the impact of the early introduction of PCC for children with ST on 1) Facilitation of interdisciplinary meetings (IDM) and goals of care 2) Counseling support including coping, advocacy, self-care, 3) Grieving, 4) End-of-life decision making/planning, and 5) Bereavement. Methods: An audit of all PCC from November/2012 to May/2014 was performed. Newly diagnosed patients with high risk ST (metastatic disease, need for HSCT or risk for relapse of &gt; 30%) were eligible for early PCC (36/44). Patients with brain tumors were excluded (19). Counselors were introduced to the patient/family at diagnosis. The perception of the intervention was explored among physicians and counselors. Results: 29/35 patients (72%) were offered early PCC, 1 declined the intervention. 17/29 developed disease relapse or progression (58%), 11/17 died. 9/29 had high risk ST without relapse (31%), 6/29 had loss of physical function (21%), 5/29 had other chronic diseases (17%). 20 had IDM for re-direction of goals of care. 25 (86%) received at least 1 of 3 counseling aspects. 20 received grieving support during treatment (6 due to loss of physical function, 4 during relapse and 11 during the dying process). 11 received end-of-life and bereavement support. Median number of visits/patient was 14. Pediatric oncologists felt early PCC favored effective communication between patients/families and medical teams, counselors felt early PCC was critical for rapport and trust building for an effective and productive professional relationship that strengthen the continuity of care. Conclusions: Early PCC for children with ST is feasible, and well-accepted by patients/families and physicians. It facilitates the comprehensive care of patients with ST throughout the disease trajectory.

Chronic Cancer: Bringing Palliative Care Into the Conversation

Palliative care is a treatment model that aims to relieve patient suffering and improve quality of life, and is essential for those living with chronic cancer. However, most palliative care referrals are made as a last resort when all other treatment options have failed. This article argues that social workers have an important role in early palliative care discussions because of their unique skill set. Techniques for early introduction of palliative care are addressed, as are ways for empowering patient advocacy. A case narrative of a young woman with chronic cancer is included as an example of the need for ongoing palliative care conversations.

Chemotherapy prescription appropriateness in end-of-life cancer care: impact of referral to the palliative care specialist at the Cancer Institute of Romagna (IRST)–IRCCS

The expansion of therapeutic possibilities for late-stage cancer patients and the increasing availability of new chemotherapeutic agents with a good toxicity profile can lead to aggressive and potentially inappropriate prescribing behavior, lacking detailed guidelines on this topic. Several studies have shown that the early introduction of palliative care results in significant improvements in the quality of life. A retrospective observational study was carried out at the Cancer Institute of Romagna (IRST IRCCS) to investigate the involvement of the palliativist in the patient’s therapeutic path, the timing of the oncologist’s request for an intervention from the palliativist and the impact of the community Palliative Care Unit on current clinical practice. Out of 1,250 consecutive patients receiving chemotherapy during the study period, a heterogeneous frequency in the request for palliative care intervention was observed in the different disease groups, with a progressive increase in the number consultations registered in all groups as the disease progressed. In a subgroup of patients treated at IRST who died in 2010, only 8 % who had contact with the Palliative Care Unit received the last therapeutic cycle in the final 15 days of life, and only 14 % received a new therapeutic line <30 days before death. The present study confirms that the integration of oncology and palliative care models leads to a more appropriate management of end-of-life patients. Our results could represent a natural background for further studies aimed at comparing normal clinical practice and early palliative care models.

Chronic lung allograft dysfunction after lung transplantation: the moving target

Chronic lung allograft dysfunction is a major challenge in long-term management of lung transplant recipients. Both alloimmune-dependent factors (rejection) and alloimmune-independent factors contribute to the development of chronic lung allograft dysfunction. Thus, use of the term "chronic rejection" tends to be intentionally avoided among specialists in the field, although "chronic rejection" is still an acceptable lay word understood by many patients. Several different phenotypes have been identified in chronic lung allograft dysfunction, including restrictive allograft syndrome, neutrophilic reversible allograft dysfunction, and fibrous bronchiolitis obliterans syndrome. Restrictive allograft syndrome is characterized by restrictive physiology and peripheral foci of inflammation and fibrosis, which contrasts the obstructive physiology and pathological foci in small airways in conventional bronchiolitis obliterans syndrome. Among patients with bronchiolitis obliterans syndrome, there is a subpopulation that responds relatively well to azithromycin. Because these patients show airway neutrophilia, this subtype of chronic lung allograft dysfunction was named neutrophilic reversible allograft dysfunction. Conversely, patients with bronchiolitis obliterans syndrome unresponsive to azithromycin show airway fibrosis with less inflammation (fibrous bronchiolitis obliterans syndrome). In general, restrictive allograft syndrome shows poorer survival than does bronchiolitis obliterans syndrome, and early-onset bronchiolitis obliterans syndrome (within 2 years) shows a worse prognosis than does late-onset bronchiolitis obliterans syndrome. Until preventive and therapeutic options are refined, chronic lung allograft dysfunction will remain a major life-limiting factor. It has significant psychological, physical, social, and economic impacts. Early introduction of palliative care is another important strategy to improve patients' quality of life.

Improving Patients' Quality of Life at the End of Life

Improving Patients' Quality of Life at the End of Life