Integration Of Palliative Care Services Research Articles

Integration of Palliative Care into Acute Myeloid Leukemia Care.

To provide an overview of the past, present, and future of the integration of palliative care services for patients with hematologic malignancies, such as acute myeloid leukemia (AML). Published literature as indexed in Medline, relevant guideline documents, textbooks, and clinical experience. Patients with acute leukemias have substantial palliative care needs that often go unmet with standard oncology care. Evidence shows that the early integration of specialist palliative care into standard oncology care improves patient-centered outcomes among those with advanced solid tumors. Emerging evidence supports similar benefits among hospitalized patients with hematologic malignancies undergoing stem cell transplantation, and additional trials are underway to further test palliative care interventions in patients with AML. By better understanding the palliative care needs of patients with AML and the evidence of integration with standard oncologic care, patients with leukemias may be more likely to receive early integrated palliative care.

Assessment of unmet needs and barriers to end-of-life care provision in Kazakhstan

Abstract Introduction Palliative care, a holistic multidisciplinary approach for those persons with terminal diseases, providing relief for physical, emotional, psychosocial and spiritual suffering of both the patients and their families and to support the dignity of all involved in the process of dying. The purpose of this qualitative research project is to identify the barriers for end-of-life care provision in Kazakhstan and to provide recommendations on how to integrate and assure high quality palliative care for patients within the cultural context of Kazakhstan. Methods Our proposed research project employed qualitative research methods, including semi-structured in-depth interviews using grounded theory. We conducted purposive recruiting with content analysis and semi-structured interviews until saturation was achieved. The interviews have been conducted at the University Medical Center (UMC) teaching hospitals, including National Research Center for Maternal and Child Health and the National Children’s Rehabilitation Center. The total number of participants were 65 individuals, of whom 26 were medical doctors, 20 nurses, 7 speech therapists, 6 psychologists, 4 educators and 2 social workers. All participants had experience working with terminally ill patients, family members, and caregivers. The data was then translated into English. Analysis of the interview data have been performed by using the computer assisted software analysis package - NVivo. Institutional review board (IRB) approval of the Nazarbayev University has been received, assuring informed consent and confidentiality safeguards in the research. Results The study findings indicate the evidence of growing demand in training of healthcare professionals, inadequate provision of pain relief and lack of public awareness about palliation as primary obstacles for palliative care development in Kazakhstan. Key messages The findings of the study are very important to help stakeholders to focus on the development of training opportunities for palliative care specialists. The results of the study help to develop milestones and concrete strategy for integration of palliative care services into the national healthcare system of Kazakhstan.

Audiological Management of Pediatric Oncology Patients

Audiological Management of Pediatric Oncology Patients

Palliative care services in pediatric oncology.

Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date. Positive trends toward increased, appropriate integration of palliative care services in the care of children with cancer and their families have been observed. Continued research, advocacy, and education are necessary to optimize the care of this vulnerable population of patients and their families.

Evidence-Based Review and Discussion Points

Evidence-Based Review and Discussion Points

Successful integration of palliative care services into the multidisciplinary multiple myeloma clinics: An observational study based on a single institution experience.

142 Background: The pain syndromes, both acute and chronic are prevalent and often the only complaints affecting the patients’ quality of life and functional capacity. Here we describe our experience of successful integration of palliative care service into multiple myeloma (MM) management in a form of the disease specific multidisciplinary clinic. Methods: We have established a dedicated monthly multidisciplinary clinic for all patients diagnosed with symptomatic MM as a pilot project to incorporate different specialties involved in MM care with the goal to improve on disease management, increase compliance with office visits, reduce emergency department visits and benefit a healthcare system. Patients were able to have the same day visits with medical oncologist, radiation oncologists, palliative care physician, integrative medicine and medical psychologist. Over the course of two years (April 2015 through March 2017), we provided care to 39 unique MM patient. Results: After medical/transplant oncology encounters (N = 601), the most encountered specialists were palliative care (N = 208), followed by radiation oncology (N = 34) and integrative medicine/medical psychology (N = 33). The rate of missed office visits for multidisciplinary clinic was 5%, compared to average 7% for all cancer patients at our center. The rates of emergency department visits were rising in proportion to non-compliance with multidisciplinary clinic visits (correlation coefficient 0.43) Conclusions: Patients with MM cared for at the multidisciplinary clinic had better compliance with office visits and fewer unplanned emergency department visits in comparison patients with other oncologic disorders. The rates of emergency departmentvisits were proportional to non-compliance with multidisciplinary clinic visits. The degree of utilization of integrative medicine and psychology was comparable to radiation oncology encounters suggesting that psychological, behavioral, dietary interventions, complementary, physical therapies and rehabilitation have an important and growing role in MM management.

Palliative Care Development in Ukraine

Abstract There are approximately 1 million cancer patients in Ukraine and 90,000 cancer deaths a year, 35% of these are diagnosed in the late stage of disease. Ukraine has the most severe HIV epidemic in the region with more than 200,000 persons living with HIV/AIDS and 6000-10000 deaths annually. The morphine consumption rate is among the lowest in the. The first palliative care services were established in 1996 and the number has slowly increased with services provided in inpatient units, home and day care programs and by a range of health care providers. Laws and regulations have been amended and controlled medicines may now be prescribed by all physicians with no maximum daily dose restriction for morphine, fewer approval signatures required, and prescriptions are valid for 10 days. Palliative care education and training is taking place in undergraduate and postgraduate medical schools in a number of cities and public awareness campaigns have educated the public and mobilized communities. Several challenges remain including the lack of national funding to procure medicines and support palliative care services, persisting myths about opioids and the limited number of trained palliative care professionals coupled with low professional esteem restricts the integration of palliative care services into the public health system.

Practice Patterns, Attitudes, and Barriers to Palliative Care Consultation by Gynecologic Oncologists.

We sought to describe practice patterns, attitudes, and barriers to the integration of palliative care services by gynecologic oncologists. Members of the Society of Gynecologic Oncology were electronically surveyed regarding their practice of incorporating palliative care services and to identify barriers for consultation. Descriptive statistics were used, and two-sample z-tests of proportions were performed to compare responses to related questions. Of the 145 respondents, 71% were attending physicians and 58% worked at an academic medical center. The vast majority (92%) had palliative care services available for consultation at their hospital; 48% thought that palliative care services were appropriately used, 51% thought they were underused, and 1% thought they were overused. Thirty percent of respondents thought that palliative care services should be incorporated at first recurrence, whereas 42% thought palliative care should be incorporated when prognosis for life expectancy is ≤ 6 months. Most participants (75%) responded that palliative care consultation is reasonable for symptom control at any stage of disease. Respondents were most likely to consult palliative care services for pain control (53%) and other symptoms (63%). Eighty-three percent of respondents thought that communicating prognosis is the primary team's responsibility, whereas the responsibilities for pain and symptom control, resuscitation status, and goals of care discussions were split between the primary team only and both teams. The main barrier for consulting palliative care services was the concern that patients and families would feel abandoned by the primary oncologist (73%). Ninety-seven percent of respondents answered that palliative care services are useful to improve patient care. The majority of gynecologic oncologists perceived palliative care as a useful collaboration that is underused. Fear of perceived abandonment by the patient and family members was identified as a significant barrier to palliative care consult.

The Delivery of Palliative and End-of-Life Care in Ontario.

Healthcare use in the year prior to death represents a large portion of healthcare spending by older adults. While Canada is considered to have advanced integration of palliative care services within our healthcare system, much of this care is still delivered in hospitals and with varying levels of access according to cause of death trajectory and geography. Results presented in a series of studies from the Institute for Clinical Evaluative Sciences (ICES) unveil gaps in current palliative care delivery and offer directions for future research and policy development.

National palliative care capacities around the world: Results from the World Health Organization Noncommunicable Disease Country Capacity Survey

Background: Previous estimates of global palliative care development have not been based on official country data. Aim: The World Health Organization Noncommunicable Disease Country Capacity Survey of World Health Organization member state officials monitors countries’ capacities for the prevention and control of noncommunicable diseases. In 2015, for the first time, questions were included on a number of palliative care development metrics to generate baseline data for monitoring global palliative care development. Design: Participants were given instructions, a glossary of terms, and 3 months to complete this closed, non-randomized, online survey. Questions were developed through a consultative process with relevant technical World Health Organization departments. Setting/participants: Health ministry officials serving as noncommunicable disease focal points from 177 out of 194 (91%) of World Health Organization Member States completed the voluntary survey. Results: This survey reveals that (a) a minority (37%) of countries have an operational national policy for noncommunicable diseases that includes palliative care, (b) palliative care is least likely to have funding available compared with other core noncommunicable disease services, and (c) there is a large country-income gradient for palliative care funding, oral morphine availability, and integration of palliative care services at the primary levels of the health system. Conclusion: Palliative care for noncommunicable disease patients must be strengthened in a majority of countries. These data provide a baseline for trend measurement of official country-level and global palliative care development. A repeat assessment is taking place in the first half of 2017.

Planning for Deactivation of Implantable Cardioverter Defibrillators at the End of Life in Patients With Heart Failure.

Implantable cardioverter defibrillators (ICDs) may be burdensome in end-stage heart failure. At the end of life, as many as one-fifth to one-third of patients experience an ICD shock. Critical care nurses should be aware of the potential burden of these shocks at the end of life as well as the ethics and organizational policies surrounding ICD deactivation. This literature review examines the issues surrounding ICD therapy at the end of life. Based on this author's findings, recommendations for discussing and implementing ICD deactivation are offered. Health care organizations should have clear policies addressing ICD deactivation to provide for seamless integration of palliative care services throughout the course of heart failure. These policies should empower nurses to activate resources in a timely manner and should clearly outline processes for ICD deactivation.

Integrating palliative care services in oncology clinics: An application of the Edmonton Symptom Assessment System (ESAS).

168 Background: Research inpalliative care has shown improvements in overall survival, quality of life, symptom management, care satisfaction and reductions in the cost of care. Therefore, the American Society of Clinical Oncology has recommended early concurrent palliative care in patients with advanced cancer and with high symptom burden. Despite this recommendation, integrating palliative services at our NCI-designated cancer center has been challenging. The aims of this project were to quantitatively describe the symptom burden of patients in ambulatory oncology clinics; facilitate the establishment of an effective referral system by detecting discrepancies between symptom burden and referral practices; and improve the integration of palliative care services by implementing the Edmonton Symptom Assessment System (ESAS) tool into 5 of our oncology clinics. Methods: ESAS forms consist of 10 questions assessing patient symptom burden and quality of life. Total scores range from 0 to 100. This tool was distributed to patients at two breast, two gastrointestinal and the thoracic clinics at each visit. The provider reviewed the forms and decided if a palliative care referral was appropriate based on patient responses. The forms as well as referral decisions were entered into REDCap. Over a 5 month period, 607 patients completed the initial assessment and 430 follow up forms were collected, resulting in a total of 1,037 scores collected. Results: The mean ESAS score for all patient visits was 20.7 (SD = 18.7). Only 3.5% (n = 21) of all patients were initially referred to palliative care and 2.6% (n = 11) of patients were referred on follow up visits. Those with an initial referral had an initial mean score of 39.0 (SD = 19.0) and a mean follow up score of 31.9 (SD = 19.5). Conclusions: This project highlights the low palliative care consultation rate and the under-utilization of services by most oncologists at the cancer center despite using the ESAS tool. However, those who received a referral had lower ESAS scores at follow-up. We propose utilizing a trigger that would capture a preset percentage of patients who indicated scores reflective of high symptom burden and distress.

Differences in the symptom distress between young adult and adult patients with advanced cancer admitted to acute palliative care unit.

99 Background: Understanding about young adults with advanced cancer in palliative care was still insufficient. The purpose of this study was to identify the differences in symptom distress between young (20-39 years) and older (≥ 40 years) adults with advanced cancer who were admitted to acute palliative care unit. Methods: We retrospectively analyzed 502 consecutive patients admitted to acute palliative care unit between April 2015 and March 2016 in two tertiary cancer centers. Descriptive statistics, analysis of Edmonton Symptom Assessment Scale (ESAS), and Symptom Distress Scale (SDS) were performed. Results: Among 502 patients, 33 (7%) were aged 20-39 years, and 469 (93%) were aged ≥ 40 years. The most common malignancies among the young adult patients were stomach and colorectal cancers. SDS was similar between young adult (38.7 ± 15.1) and old adult (41.5 ± 13.7) patients. However, pain, nausea, poor feeling of well-being sense, sleep disturbance, and financial distress were numerically higher in young adult group than older adult group. Especially, sleep disturbance (5.72 vs. 4.56, p = 0.030) and financial distress (4.44 vs. 2.87, p = 0.008) showed statistically significant difference. Conclusions: Young adult advanced cancer patients appear to show different symptom profiles. Further research is needed to identify determinants and to provide timely integration of palliative care services for this unique patient cohort.

Are families the barrier? Evaluating attitudes toward early integration of palliative care in pediatric hematopoietic stem cell transplant.

112 Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patients are prone to a great degree of treatment related toxicity and are at high risk for morbidity and mortality and, while ideally suited to benefit, inherent factors in this cure oriented field preclude the integration of PC services. Most notably, family receptivity to PC is often perceived as a barrier in HSCT yet there is no data on family attitudes toward PC in this setting. This study aimed to evaluate perceived symptom burden and patient and parent attitudes toward early PC integration in pediatric HSCT. Methods: After IRB approval, development and pre-testing, novel survey tools were administered to HSCT patients and parents. Eligibility criteria included parent of an HSCT recipient < age 10 or patient/parent dyad for patients aged 10-17, time from HSCT > 1 month and < 1 year, English-speaking, and consent/assent. Data was assessed for trends in response content frequencies, percentages and parent/child concordance. Results: Interim analysis of the first 34 participants revealed high levels of perceived symptom related suffering in the first month of HSCT with suffering from: nausea 96%, loss of appetite 88%, diarrhea 88%, pain 83%, depression 79%, anxiety 75%, and constipation 42%. 90% of patients and 71% parents expressed that a great deal or a lot of attention should be paid to quality of life from the start of HSCT. The majority of patient and parent respondents (60/46%) indicated they would likely want to meet with PC early in HSCT and very few reported definite opposition (0% children, 4% parents). Conclusions: Pediatric HSCT patients experience a high degree of symptom related suffering, perceive quality of life as a high priority, and are largely in favor of early PC involvement. Our findings suggest that family receptivity should not be a barrier to early PC in pediatric HSCT and that aggressive cure directed therapy can and should be accompanied by aggressive quality of life directed care through early PC integration.

Changes in opioid type and dose among cancer patients referred to outpatient palliative care.

106 Background: Opioid prescriptions are regulated at both federal and state levels. Examples of such regulations include use of risk evaluation and mitigation strategies (REMS), mandatory sharing of prescription data with state prescription drug monitoring programs and the reclassification of hydrocodone as schedule II opioid in October 2014. One possible consequence of such changes would be earlier referral to palliative care (PC) for opioid management. Alternatively, primary oncologist may treat patients with weak opioids or use strong opioids with lower daily dose. We hypothesized that during the last six years, the number of referrals to outpatient PC has increased and the morphine equivalent daily dose (MEDD) has decreased. Methods: We reviewed 750 randomly selected patients who were seen as a new consultation from the year 2010 to 2015. Data was collected on demographics, cancer type and stage, referring specialty, symptom assessment, cancer pain classification, performance status, opioid type and MEDD. Data were also collected on first subsequent PC visit among eligible patients. MEDD over the 6 years was evaluated using general linear regression method, adjusted for covariates. Results: Hydrocodone was the most common opioid prescribed by the referring team throughout the six-year period. After reclassification, its use declined from 43% in 2014 to 33% in 2015. Tramadol use increased from 9% in 2014 to 19% in 2015 (p < 0.0001). Median MEDD upon referral was 78mg/day in 2010 and progressively decreased to 40mg/day in 2015 (p < 0.0001). Year to year referral increased 24% in the first quarter of 2015 (after hydrocodone rescheduling), compared to 17% in 2014 (p 0.0014). Conclusions: Over the past 6 years, there has been an increase in number of referrals to PC and a decline in MEDD upon referral. Likewise, an increase in weak opioids like tramadol has also been observed. These findings suggest oncologists are sending early referrals before further opioid dose titration and rotations are considered. Further opioid regulations will likely impact the integration of PC services in comprehensive cancer care.

Discussing the Evidence for Upstream Palliative Care in Improving Outcomes in Advanced Cancer.

Palliative care has received increasing attention at the American Society of Clinical Oncology (ASCO) Annual Meeting since the publication of its provisional clinical opinion on the topic in 2012. Despite frequent discussion, palliative care remains a source of some controversy and confusion in clinical practice, especially concerning who should provide it, what it encompasses, and when and how it can help patients and their families. In this article, we provide a formal definition of palliative care and review the state of the science of palliative care in oncology. Several randomized controlled trials now show that palliative care improves important outcomes for patients with cancer. Related outcome improvements include a reduction in symptoms, improved quality of life, better prognostic understanding, less depressed mood, less aggressive end-of-life care, reduced resource utilization, and even prolonged survival. As such, ASCO recommends early integration of palliative care into comprehensive cancer care for all patients with advanced disease and/or significant symptom burden. Our aim is that this summary will facilitate greater understanding about palliative care and encourage further integration of palliative care services into cancer care. More research is needed to illuminate the mechanisms of action of palliative care and to improve the specificity of palliative care applications to unique scenarios and populations in oncology.

Early Integration of Palliative Care in the Care of Women with Advanced Epithelial Ovarian Cancer: The Time Is Now

Early Integration of Palliative Care in the Care of Women with Advanced Epithelial Ovarian Cancer: The Time Is Now

Underutilization of palliative care services in the liver transplant population.

AIMTo evaluate use of palliative care services in patients with end-stage liver disease who do not have access to liver transplant.METHODSEvaluated were end-stage liver disease patients who were removed from the liver transplant wait-list or died prior to transplant at a single transplant center over a 2-year period. Those who were removed due to noncompliance or ultimately transplanted elsewhere were excluded from this study. Patient characteristics associated with palliative care consultation were assessed using logistic regression analysis.RESULTSSix hundred and eighty-three patients were listed for liver transplant in 2013-2014 with 107 (16%) dying (n = 62) or removed for clinical decompensation prior to liver transplant (n = 45): Median age was 58 years, and the majority were male (66%), Caucasian (53%), had Child C cirrhosis (61%) or hepatocellular carcinoma (52%). The palliative care team was consulted in only 18 of the 107 patients (17%) who died or were removed, 89% of which occurred as inpatients. Half of these consultations occurred within 72 h of death. In univariable analysis, patients of younger age, white race, and higher end-stage liver disease scores at time of listing and delisting were more likely to receive palliative care services. Only younger age [Odds ratio (OR) = 0.92; P = 0.02] and Caucasian race (OR = 4.90; P = 0.02) were still associated with integration of palliative care services through multivariable analysis.CONCLUSIONPalliative care services are grossly underutilized in older, non-white patients with cirrhosis on the liver transplant wait-list. We encourage early integration of these services into clinical decision-making in the transplant population, with further studies aimed at understanding barriers to consultation.

What Strategies Might Reduce Barriers to Routine Integration of Palliative Care Services in Patients With Pulmonary Arterial Hypertension?

What Strategies Might Reduce Barriers to Routine Integration of Palliative Care Services in Patients With Pulmonary Arterial Hypertension?

Symptom burden and palliative care for patients with multiple myeloma: Cancer Experience Registry findings.

81 Background: Multiple myeloma (MM) patients are living longer with treatment advances yet remain challenged by complications and adverse treatment effects. Concurrent oncology/palliative care can improve symptom burden and quality of life for cancer patients, but the benefits of concurrent care for the MM symptom burden is not well described. Methods: From July 2013-2014, the Cancer Support Community (CSC) registered 495 MM patients to the Cancer Experience Registry: MM, an online initiative to study and raise awareness about MM’s psychosocial impact. Registrants were recruited through an outreach program including the CSC and The Leukemia & Lymphoma Society networks of communities and resources. 331 US-based registrants completed surveys about their MM history, treatment, and symptoms. Results: Median respondent age was 64 years; 54% were female, 87% Caucasian. Median time since diagnosis was 4.5 years, and 40% reported experiencing a relapse. Several symptoms interfered (quite a bit or very much) with respondents’ daily life: fatigue (40%), bone pain (22%), peripheral neuropathy (22%) sleep disturbance (21%), GI toxicity (16%), and mood swings (10%). The daily effects of fatigue, pain, sleep disturbance and mood swings were associated (p < 0.05) with distress. 36% did not report all symptoms and side effects (SEs) to their health care team (HCT). The most common reason was “I don’t think anything can be done about these problems.” More than half (58%) reported sleep disturbances related to steroids, and 46% experienced weight gain, 41% mood swings, and 39% edema. One-third (34%) reported their HCT never told them steroids could cause this. 85% felt their HCT prepared them (somewhat, quite a bit, or very much) to manage SEs of MM treatment, yet half (50%) felt little or no control over the physical SEs of MM and its treatment. Conclusions: Patients with MM experience significant symptom burden that interferes with daily living but underreport symptoms to the HCT. Many symptoms are amenable to interventions by palliative care specialists, which may improve MM patients’ quality of life. These findings suggest the need for more integration of palliative care services with oncology and other care for MM patients.