Availability Of Palliative Care Research Articles

The role of palliative care for patients with left ventricular assist devices: a narrative review.

Left ventricular assist devices (LVADs) have revolutionized the care of patients with advanced heart failure (HF). Compared to guideline-directed medical and device therapies, LVAD technology improves quality of life and reduces mortality. Palliative care specialists have an important role to play in the pre-LVAD evaluation phase, in the post-operative longitudinal care phase, and at the end-of-life in patients with LVADs. The objective of this narrative review is to describe the evidence regarding the role of palliative care for patients with LVAD across the care continuum: pre-implantation, post-implantation, and at the end-of-life. Clinical trials relevant to care of patients with HF, LVADs, and the role of palliative care were analyzed for this narrative review. Palliative care involvement in 'preparedness planning' has been described in the literature, though no standardized protocol for preparedness planning exists, to date. In the longitudinal care phase after LVAD implantation, the role of palliative care is less defined; depending on institutional culture and availability of palliative care, patients may be referred based on symptom-management needs or for advance care planning (ACP). At the end-of-life, either due to an acute event or a gradually worsening condition, palliative care is often engaged to participate in discussions regarding treatment preferences and to consider transitions in care from disease-directed treatments to comfort-focused treatments. Given the medical complexity of dying with LVADs, most patients with an LVAD die in hospital with support from palliative care teams for the physical, existential, and psychosocial distress that accompanies end-of-life and LVAD deactivation. In this narrative review, we describe the integral role of palliative care throughout the care continuum of patients living with LVADs and suggest opportunities for further research.

Retrospective analysis of the construction of the national system of hospice and palliative care in Great Britain

Today, Great Britain has one of the best hospice care systems for palliative patients in the world, which leads to interest in the path of building a Hospice and Palliative Care (НPC) system in this country. The hospice care system is mainly financed by the volunteer sector, which indicates a significant development of the state-society partnership in the organization of НPC. The national НPC system consists of inpatient care, day palliative care, care in the community and emergency hospitals. 2004–2008 is considered the key moment in the formation of the country's НPC system, which will be the focus of this study. For specialist palliative care, the National Health Service of Great Britain allocated almost £50 million a year in those days until 2004. At the same time, volunteer support was about 4 times greater. More than 220 volunteer support groups for palliative patients operated in the country. The success of building a national НPC system is described in the Palliative Care White Paper. A number of interrelated national programs may be used as a standard of palliative care in 20 years by many other countries. The development of the НPC system has influenced the British homes for the elderly, the system of primary care, the attitude to the НPC problem of doctors, local communities and society as a whole, increased the quality and availability of palliative care. Palliative care since those years has been provided 24/7, managed by coordination centers located outside medical facilities and hospices. High national НPC standards and mechanisms for monitoring their compliance have been created. Narcotic analgesia for palliative patients with chronic pain, the necessary medical, psychological, social and spiritual care is mostly available. The public debates the question of a dignified death without restrictions. The value for money of НPC is recognized by British society as acceptable. Therefore, studying the British experience of НPC organization as one of the "best practices" is useful for other countries with less developed НPC systems. Keywords: "best practices", place of death, palliative care quality standards.

Exploring knowledge, perspectives, and misperceptions of palliative care: A mixed methods analysis.

To better understand palliative care knowledge and beliefs of patients with stage II or greater bladder cancer and their caregivers. Participants were primarily patients diagnosed with muscle-invasive or locally advanced bladder cancer. All were encouraged to enroll with a caregiver (defined as the individual who most closely assists with a patient's care). Participants completed a survey and semistructured interview. Applied thematic analysis techniques were used to analyze the interview data. In total, we recruited 16 dyads, 11 patients who participated alone, and 1 caregiver who participated alone. Patients and caregivers had high levels of palliative care knowledge and there was no difference in baseline knowledge. Palliative care receptivity was also high, with most participants stating that they would be "very likely" to consider palliative care for themselves or a loved one. However, based on the analysis of multiple-choice palliative care questions and interview transcripts, many participants lacked a nuanced understanding of palliative care and harbored many common misconceptions of the basic tenants. Five main themes emerged related to palliative care: (1) Participants have a general lack of awareness of it, (2) Participants associate it with hospice and death, (3) Participants view it as primarily emotional or psychological support, (4) Participants believe it is for patients without a strong support system, and (5) Participants believe it is for people who have "given up." High educational attainment and baseline palliative care knowledge did not preclude the most common misperceptions related to palliative care. These study results indicate that patients need clearer counseling regarding the definition, goals, benefits, and availability of palliative care.

Adapting a palliative care-focused cancer self- and family management intervention for use in Israel.

In Israel, there is a need to improve quality of life and health outcomes among patients and families facing cancer. Increasing awareness of, literacy about, and availability of palliative care may further this goal. This study aimed to adapt a palliative care-focused cancer self- and family management intervention developed in the US for use in Israel. The Managing Cancer Care (MCC) psycho-educational intervention is comprised of Managing Cancer Care: A Personal Guide (MCC-PT©) for patients and Managing Cancer Care: A Caregiver's Guide (MCC-CG©) for family caregivers. Following translation into Hebrew, an expert panel of Israeli nurses edited the MCC tool for cultural relevance. The authors then conducted qualitative interviews with patients with breast cancer and their family caregivers to obtain feedback. Data were analysed using qualitative content analysis. Following recommendations from Israeli experts in oncology and/or palliative care (n=3), the authors revised intervention content specific to the US healthcare system and culture. Patients' (n=13) and family caregivers' (n=10) reported MCC as attractive (70%, 80%), topically relevant (80%, 70%), and culturally appropriate, but felt that palliative care resources should be more Israel-specific. The MCC tool is acceptable to potential users, warranting further pilot-testing.

Значення міжнародних визначень, підходів і стандартів для оптимізації надання паліативної допомоги в Україні

Актуальність. Аналіз медико-статистичних даних щодо розвитку медико-демографічної ситуації у світі і в Україні, наукової літератури, нормативно-правових документів України і авторитетних міжнародних організацій свідчить про швидке постаріння населення, поширення захворюваності та смертності від хронічних неінфекційних та інфекційних захворювань, низьку доступність паліативної та хоспісної допомоги (ПХД) для населення в Україні. Мета. На підставі медико-соціального аналізу сучасних міжнародних визначень, підходів і стандартів паліативної допомоги визначити оптимальні моделі надання ПХД в Україні. Матеріали та методи. Під час проведення роботи були використані нормативно-правові документи міжнародних організацій і України, інформаційно-аналітичні матеріали діяльності закладів паліативної та хоспісної медицини, дані галузевої статистики, наукова література. При обробці матеріалів використовувались загальноприйняті методи. Результати. Порівняльний медико-соціальний аналіз вітчизняного законодавства, нормативно-правових документів України та авторитетних міжнародних організацій свідчить, що визначення «паліативна допомога» в українському законодавстві не зовсім відповідає сучасній міжнародній практиці, оскільки відповідно до нормативно-правової бази України, поняття «паліативна допомога» є видом медичної допомоги та застосовується тільки стосовно інкурабельних пацієнтів із прогнозованою (обмеженою) тривалістю життя і членів їх сімей, у той час як Всесвітня організація охорони здоров’я (ВООЗ) визначає паліативну допомогу як підхід, що дозволяє поліпшити якість життя пацієнтів (дітей, дорослих) і їх сімей, які зіштовхнулися з проблемами, пов’язаними із загрозливими для життя захворюваннями. Безумовно, такий підхід значно розширює контингент пацієнтів, збільшує потребу у ПХД. Обґрунтовується мультидисциплінарна та міжсекторальна модель надання паліативної допомоги у стаціонарних і амбулаторних умовах, зокрема вдома, умови створення та впровадження доступної, якісної й ефективної системи паліативної допомоги в Україні. Автори показують важливість і значення розробки стратегії створення та розвитку системи ПХД в Україні, заснованої на міжнародно визнаних визначеннях, а також обговорюють можливі моделі й рівні інтеграції ПХД населенню в практику охорони здоров’я. Висновки. Відповідно до визначення ВООЗ, паліативна допомога є підходом, що надає можливість поліпшити якість життя пацієнтів (дітей, дорослих) і їх сімей, які зіштовхнулися з проблемами, пов’язаними із загрозливим (небезпечним) для життя захворюванням, що значно розширює контингент пацієнтів, збільшує потребу у ПХД. Сьогодні ПХД є сучасним мультидисциплінарним пацієнт-сім’я-орієнтованим підходом, який найбільш адекватно забезпечує потреби та належну якість життя паліативних пацієнтів і членів їх сімей, сприяє забезпеченню прав, збереженню людської гідності тяжкохворих, зокрема інкурабельних пацієнтів з обмеженим прогнозом тривалості життя. Порівняльний аналіз нормативно-правових документів України й авторитетних міжнародних організацій свідчить, що визначення «паліативна допомога» в українському законодавстві не зовсім відповідає сучасній міжнародній практиці, оскільки в Україні паліативна допомога є видом медичної допомоги і застосовується тільки стосовно інкурабельних пацієнтів з обмеженим прогнозом тривалості життя і членів їх сімей. В умовах реформування системи громадської охорони здоров’я в Україні урядовці, політики, фахівці з ПХД, правозахисники, представники громадських організацій повинні взяти на себе відповідальність за створення та впровадження інноваційного підходу — доступної, якісної та ефективної системи ПХД населенню, що вимагає удосконалення, оптимізації нормативно-правових документів відповідно до міжнародних підходів та стандартів. Служба ПХД, яка базується на міжнародних стандартах і підходах, повинна стати невід’ємною інтегрованою складовою системи охорони здоров’я та соціального захисту населення України, що буде свідченням європейського вибору нашої держави.

Evaluation of packaged funding programs for palliative and hospice care by the National Health Service of Ukraine

Financing of Palliative and Hospice Care (PHC) for adults and children in Ukraine is carried out from the state budget under the Medical Guarantee Programs (MGP) by the National Health Service of Ukraine (NHSU). In the professional medical environment and in the Ukrainian society, an active discussion about the list of pathologies of adults and children that require PCD, about the availability of palliative care, the effectiveness of hospices, palliative departments, wards of specialized and multidisciplinary hospitals, mobile teams, "home hospices", the availability of effective analgesia, demand for euthanasia, Ukrainian society's readiness for it continues. An important practical issue of the PHC organization is the list of medical and related services that are needed by palliative patients and that are financed by the NHSU. Working groups of specialists invited by the NHSU for expert evaluation of the list of such services constantly make corrections to the list in accordance with the feedback that exists between the NHSU and medical institutions of Ukraine that have concluded contracts for the PHC provision. This review is devoted to the analysis of changes in the list of medical services for palliative patients in accordance with the MGP. Financing of medical services provided to Ukrainians by medical institutions under the MGP began in Ukraine in 2020, when more than 1,600 specialized medical institutions concluded contracts with the NHSU under MGP, which provided services worth more than 100 billion UAH, and 123.5 billion UAH in 2021. And in 2011–2019, only a few dozen medical institutions provided PHC in Ukraine. We concluded that the MGP and package financing of PHC by the NHSU significantly expanded the capabilities of medical institutions of Ukraine to provide such care and cover the majority of patients who need it. Medical facilities must fulfill the minimum requirements of a significant volume to obtain the right to provide palliative care for budget funds. Keywords: PHC, medical guarantee programs, NHSU, health care financing.

Medical decisions concerning the end of life for cancer patients in three Colombian hospitals \u2013 a survey study

BackgroundCancer patients’ end-of-life care may involve complex decision-making processes. Colombia has legislation regarding provision of and access to palliative care and is the only Latin American country with regulation regarding euthanasia. We describe medical end-of-life decision-making practices among cancer patients in three Colombian hospitals.MethodsCancer patients who were at the end-of-life and attended in participating hospitals were identified. When these patients deceased, their attending physician was invited to participate. Attending physicians of 261 cancer patients (out of 348 identified) accepted the invitation and answered a questionnaire regarding end-of-life decisions: a.) decisions regarding the withdrawal or withholding of potentially life-prolonging medical treatments, b.) intensifying measures to alleviate pain or other symptoms with hastening of death as a potential side effect, and c.) the administration, supply or prescription of drugs with an explicit intention to hasten death. For each question addressing the first two decision types, we asked if the decision was fully or partially made with the intention or consideration that it may hasten the patient’s death.ResultsDecisions to withdraw potentially life-prolonging treatment were made for 112 (43%) patients, 16 of them (14%) with an intention to hasten death. For 198 patients (76%) there had been some decision to not initiate potentially life-prolonging treatment. Twenty-three percent of patients received palliative sedation, 97% of all patients received opioids.Six patients (2%) explicitly requested to actively hasten their death, for two of them their wish was fulfilled. In another six patients, medications were used with the explicit intention to hasten death without their explicit request. In 44% (n = 114) of all cases, physicians did not know if their patient had any advance care directives, 26% (n = 38) of physicians had spoken to the patient regarding the possibility of certain treatment decisions to hasten death where this applied.ConclusionsDecisions concerning the end of life were common for patients with cancer in three Colombian hospitals, including euthanasia and palliative sedation. Physicians and patients often fail to communicate about advance care directives and potentially life-shortening effects of treatment decisions. Specific end-of-life procedures, patients’ wishes, and availability of palliative care should be further investigated.

Palliative Care and the Dance of Death in Harold Pinter's Moonlight

ABSTRACT As we live through a global pandemic, how do our experiences of healthcare and lockdown influence our engagement with theatre? In what ways is COVID-19 raising concerns about the availability of palliative care? More specifically, how does the work of Harold Pinter help us to understand our relationship toward caretaking and caregiving? This article explores these questions through its engagement with Pinter's 1993 play Moonlight.

Intensity of end-of-life health care and mortality after systemic anti-cancer treatment in patients with advanced lung cancer

BackgroundWe aimed to study the mortality and intensity of health care in patients with advanced lung cancer who received systemic anti-cancer treatment (SACT) compared with patients who were not eligible for SACT (no-SACT).MethodsA retrospective cohort of patients with lung cancer, who were treated at the North Estonia Medical Centre from 2015 to 2017, was linked to population-based health care data from the Estonian Health Insurance Fund. We calculated 14- and 30-day mortality after SACT and used a composite measure of intensity of care, comprised from the following: emergency department visit, admission to hospital, admission to intensive care unit, receipt of radiotherapy or systemic treatment.ResultsThe median overall survival (OS) of patients who received at least one cycle of SACT (n = 489) was 9.1 months and in patients with no-SACT (n = 289) 1.3 months (hazard ratio [HR] = 4.23, 95% CI = 3.60–5.00). During the final 30 days of life, intensive EOL care was received by 69.9% of the SACT patients and 43.7% of the no-SACT patients. Intensive EOL care in the last 30 days of life is more probable among patients in the SACT group (odds ratio [OR] = 3.58, 95% CI = 2.54–5.04, p < 0.001), especially in those with a stage IV disease (OR = 1.89, 95% CI = 1.31–2.71, p = 0.001). In the SACT group 6.7 and 14.7% of patients died within 14 days and 30 days after the last cycle, respectively.ConclusionsSignificant proportion of patients with advanced lung cancer continue to receive intensive care near death. Our results reflect current patterns of EOL care for patients with lung cancer in Estonia. Availability of palliative care and hospice services must be increased to improve resource use and patient-oriented care.

Physicians’ views on the usefulness and feasibility of identifying and disclosing patients’ last phase of life: a focus group study

ObjectivesAccurate assessment that a patient is in the last phase of life is a prerequisite for timely initiation of palliative care in patients with a life-limiting disease, such as advanced...

The attitude of the population to the development of palliative care in our country

The article analyzes the respondents ‘attitude to the current state and development of palliative care in Russia. The study was carried out on the basis of a questionnaire survey. The author concludes that there is a low level of public awareness about the availability of palliative care and a low level of interest in this topic. At the same time, the majority of respondents consider it necessary to improve the provision of medical care to patients in a terminal state at the place of residence.

Social Networks and Dying at Home: Analysis of Outcomes From 13 Countries Using SHARE

Social networks are critical for end-of-life decision-making and hands on support and may also impact end-of-life outcomes including location of death. Yet we fail to consider these factors in the context of cultural values and variation in healthcare system financing and resources, e.g., availability of palliative care. Using SHARE, we examined the following factors for 6,391 decedents across 13 countries interviewed in the last year of life: family size, living alone, and size and characteristics of social networks. We compared these characteristics cross-nationally for persons dying at home as opposed to in hospital and other formal settings. While individuals with larger social networks are more likely to die at home, we find a cross-national gradient of higher unmet healthcare needs resulting in overall more home-based deaths. Our findings suggest that individual factors such as family availability must be considered in the context of country-level factors when examining quality end-of-life indicators.

Fully Integrated Oncology and Palliative Care Services at a Local Hospital in Mid-Norway: Development and Operation of an Innovative Care Delivery Model.

IntroductionEarly access to cancer palliative care is recommended. Descriptions of structures and processes of outpatient palliative care clinics operated within smaller hospitals are scarce. This paper presents the development and operation of a fully integrated cancer and palliative care outpatient clinic at a local hospital in a rural region of Mid-Norway offering palliative care concurrent with cancer treatment. A standardized care pathway was applied.MethodsPalliative care is in Norway part of the public healthcare system. Official recommendations recent years point out action points to improve delivery of palliative care. An integrated cancer and palliative care outpatient clinic at a local hospital and an innovative care delivery model was developed and operated in this setting. Patients were recruited for a descriptive study of the patient population. Clinical data were collected by clinical staff and 13 symptom intensities were reported by the patients.ResultsCancer and palliative care were provided by one team of healthcare professionals trained in both fields. There was a close collaboration with the other departments at the hospital, with its affiliated tertiary hospital, and with community health and care services to provide timely referral, enhanced continuity, and improved coordination of care. Eighty-eight patients were included. Mean age was 65.6 years, the most common cancer diagnoses were digestive organs (22.7%), male genital organs (20.5%) or breast (25.0%), 75.0% had metastatic or locally advanced cancer, 59.1% were treated with non-curative intention and 93.1% had Karnofsky Performance Status ≥ 80%. Median scores of individual symptoms ranged from 0 to 3 (numerical rating scale, 0–10) and 61.0% reported at least one clinically significant symptom rating (≥ 4).ConclusionThis delivery model of integrated outpatient cancer and palliative care is particularly relevant in rural regions allowing cancer patients access to palliative care earlier in the disease trajectory and closer to home

Expanding the Interdisciplinary Palliative Medicine Workforce: A Longitudinal Education and Mentoring Program for Practicing Clinicians

ContextThe disparity between gaps in workforce and availability of palliative care (PC) services is an increasing issue in health care. To meet the demand, team-based PC requires additional educational training for all clinicians caring for persons with serious illness. ObjectivesTo describe the educational methodology and evaluation of an existing regional interdisciplinary PC training program that was expanded to include chaplain and social worker trainees. MethodsFrom 2015 to 2017, 26 social workers, chaplains, physicians, nurses, and advanced practice providers representing 22 health systems completed a two-year training program. The curriculum comprises biannual interdisciplinary conferences, individualized mentoring and clinical shadowing, self-directed e-learning, and profession-focused seminar series for social workers and chaplains. Site-specific practice improvement projects were developed to address gaps in PC at participating sites. ResultsPC and program development skills were self-assessed before and after training. Among 12 skills common to all disciplines, trainees reported significant increases in confidence across all 12 skills and significant increases in frequency of performing 11 of 12 skills. Qualitative evaluation identified a myriad of program strengths and challenges regarding the educational format, mentoring, and networking across disciplines. ConclusionTeaching PC and program development knowledge and skills to an interdisciplinary regional cohort of practicing clinicians yielded improvements in clinical skills, implementation of practice change projects, and a sense of belonging to a supportive professional network.

ПАЛЛИАТИВНАЯ ПОМОЩЬ ДЕТЯМ С ТЯЖЕЛЫМИ, НЕ ПОДДАЮЩИМИСЯ ЛЕЧЕНИЮ, ЗАБОЛЕВАНИЯМИ. АНАЛИТИЧЕСКИЙ ОБЗОР

Significance. Improving quality and availability of palliative care for children with severe refractory diseases is one of the main objectives of the federal and reginal authorities. The efforts are focused on improving quality of patients’ life, increasing satisfaction of patients (their legal representatives) and families with availability of palliative care, that relieves suffering of patients and reduces symptoms of depression. Purpose of the study. To analyze modern forms and methods of palliative care delivery to children with severe refractory diseases. Material and methods. The authors have conducted a content analysis of scientific publications on organization of palliative care delivery to children with severe refractory diseases. A total of 153 publications were analyzed, including 141 foreign publications for the period from 1998 to the second quarter of 2020. A total of 44 publications have been selected for the analytical review including 28 publications from the international Scopus database, 12 – from the Russian scientific citation index database, including 7 publications from the list of VAK journals (Higher Attestation Commission Journals), and 4 - materials of international medical organizations (WHO, WHA, AHA, European Council). Results. Children with severe refractory diseases need specialized medical, psychological and social assistance. Palliative care includes active and comprehensive support for physical, psychological, social and spiritual well-being of these children, relieving their suffering, from diagnosis to outcome, reducing symptoms of depression in their families, ensuring the best quality of life. More than 21 million children worldwide require palliative care every year, ranging from 20 to 120 per 10,000 children around the world. However, palliative care is often discussed in the late stages of the disease, not always resulting in its early initiation, only little more than half the patients in need receive palliative care, there are differences in tools for assessing care results. It is necessary to early initiate palliative care, increase volumes of its provision, increase the number of specialists and institutions involved in palliative care delivery, as well as implement a comprehensive balanced assessment of care results.

Evaluating a Human Rights Approach to Health in the Indian Context: Emerging Needs and Challenges

Health has been one of the most important human rights concerns around the world since the inception of the United Nations. Health in this essay is viewed from a joint perspective of medicine and public health. This paper aims to examine the health and human rights concerns from an Indian perspective with regard to four main themes: (i) availability of basic necessities, (ii) affordability and accessibility of health care services, (iii) specialized care for patients, and (iv) availability of palliative care for a dignified life and death. The issues raised around these four themes are analyzed in sociological, psychological and cultural theoretical perspectives highlighting the actions needed to bring about appropriate change in the Indian context. This paper delineates the scope of the government’s actions and people’s participation in considering health as a basic human right for all people in India.

Technical-efficiency analysis of end-of-life care in long-term care facilities within Europe: A cross-sectional study of deceased residents in 6 EU countries (PACE).

BackgroundAn ageing population in the EU leads to a higher need of long-term institutional care at the end of life. At the same time, healthcare costs rise while resources remain limited. Consequently, an urgency to extend our knowledge on factors affecting efficiency of long-term care facilities (LTCFs) arises. This study aims to investigate and explain variation in technical efficiency of end-of-life care within and between LTCFs of six EU countries: Belgium (Flanders), England, Finland, Italy, the Netherlands and Poland. In this study, technical efficiency reflects the LTCFs’ ability to obtain maximal quality of life (QoL) and quality of dying (QoD) for residents from a given set of resource inputs (personnel and capacity).MethodsCross-sectional data were collected by means of questionnaires on deceased residents identified by LTCFs over a three-month period. An output-oriented data-envelopment analysis (DEA) was performed, producing efficiency scores, incorporating personnel and capacity as input and QoL and QoD as output. Scenario analysis was conducted. Regression analysis was performed on explanatory (country, LTCF type, ownership, availability of palliative care and opioids) and case mix (disease severity) variables.Results133 LTCFs of only one type (onsite nurses and offsite GPs) were considered in order to reduce heterogeneity. Variation in LTCF efficiency was found across as well as within countries. This variation was not explained by country, ownership, availability of palliative care or opioids. However, in the ‘hands-on care at the bedside’ scenario, i.e. only taking into account nursing and care assistants as input, Poland (p = 0.00) and Finland (p = 0.04) seemed to be most efficient.ConclusionsEfficiency of LTCFs differed extensively across as well as within countries, indicating room for considerable efficiency improvement. Our findings should be interpreted cautiously, as comprehensive comparative EU-wide research is challenging as it is influenced by many factors.

Resilience for family carers of advanced cancer patients—how can health care providers contribute? A qualitative interview study with carers

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers (n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

Editors' Note

Editors' Note: In the article “High hypothetical interest in physician-assisted death in multiple sclerosis,” the opinions of persons with multiple sclerosis (MS) regarding physician-assisted death (PAD) were assessed. Investigators surveyed participants in the North American Research Committee on Multiple Sclerosis Registry regarding PAD. For each of 5 hypothetical situations, respondents indicated whether they definitely would, probably would, probably would not, or definitely would not consider PAD. More than one-third of surveyed patients with MS said they would definitely or probably consider PAD in each of the 5 hypothetical situations and two-thirds would consider requesting PAD for unbearable pain. On multivariable analysis, religiosity, social support, depression, pain, disability, sex, and race were associated with considering PAD in some or all of the situations presented. The authors concluded that depending upon the situation, a large proportion of persons with MS would consider PAD and that the association of depression with considering PAD emphasizes the importance of diagnosing and treating depression. An accompanying editorial, “Physician-assisted death in chronic neurologic diseases,” by Bernat and McQuillen, stated that physicians should not suggest to their patients that dying is a better solution than continued life and that for patients who muse about PAD, physicians should have a low threshold for referring them to palliative medicine to achieve optimal symptom palliation including the identification and treatment of depression. Commenting on the study, Dr. Masdeu discusses Leo Alexander's report on medical records left behind by the Nazi regime. Alexander concluded that atrocious crimes committed were, at first, merely a subtle shift in emphasis in the basic attitude of the physicians and that those started with the acceptance that there is such a thing as life not worthy to be lived. Commenting on the editorial, Dr. Bier reminds the readers that among legislative criteria granting the right to practice PAD, there are 4 requirements: requests must be voluntary, persistent, well-thought, and well-informed. Furthermore, he corrects that the law in Belgium allows only active euthanasia and not PAD (the editorial stated that in the Netherlands and Belgium, “voluntary active euthanasia now far surpasses PAD in frequency”). Finally, Dr. Sethi highlights the other side of the argument, explaining that a fundamental belief underlying the right to die (RTD) is that one's body and one's life are one's own to dispose of as one sees fit. He adds that a form of PAD by withholding extraordinary life support measures (such as intubation and mechanical ventilation of terminally ill patients) is already routinely practiced in critical care units across the world and that different religions have different perspectives when it comes to the RTD. Marrie et al., authors of the original study, explain that the issue of PAD in chronic illness is complex and that whether the individual physician supports or opposes PAD, it is clear that people with MS are thinking about this issue and want to talk about it. They also add that perspectives may differ based on religious beliefs, cultural practices, and other factors. Also in response, Drs. Bernat and McQuillen clarify that, from a legal standpoint, the right to die is a slogan since no American court found a constitutionally protected right to die. However, terminally ill patients may voluntarily choose to stop eating and drinking without it being considered suicide. From an ethical perspective, it remains controversial whether death with dignity would be best achieved by legalizing PAD or by enhancing the quality and availability of palliative care. —Chafic Karam, MD, and Robert C. Griggs, MD Editors' Note: In the article “High hypothetical interest in physician-assisted death in multiple sclerosis,” the opinions of persons with multiple sclerosis (MS) regarding physician-assisted death (PAD) were assessed. Investigators surveyed participants in the North American Research Committee on Multiple Sclerosis Registry regarding PAD.

Last year of life of adolescent young adult (AYA) oncology patients: Inpatient utilization.

e18047 Background: Studies of AYA oncology patients’ end-of-life care utilization are critical as cancer is the leading cause of non-accidental AYA death and end-of-life care contributes significantly to healthcare expenditures. We sought to determine the quantity of and disparities in inpatient utilization in the last year of life of AYAs with cancer. Methods: Using the California Office of Statewide Health Planning and Development administrative database linked to death certificates, we performed a retrospective population-based analysis of cancer patients aged 15-39 who died between 2000 and 2011. We determined the number of hospital days and inpatient costs for each patient in their last year of life. We determined clinical and socio-demographic factors associated with high inpatient utilization. We also evaluated admission patterns (frequency and location) as death approached. Results: The 12,883 patients were admitted an average of 40 days in their last year of life, resulting in $149,307 per patient in inpatient costs [non last year of life AYA oncology: 11.6 days (p &lt; 0.01) and $43,423 (p &lt; 0.01)]. As death approached, admission rates and the percent of admissions at non-specialty centers increased. Five percent of patients used 20% of bed-days in the last year (high-utilizers). Sociodemographic and clinical factors associated with high utilization included younger age (15-21y: OR = 2.85; 95% CI, 2.3-3.6, 22-30y: OR = 1.81; 95% CI, 1.5-2.2, reference: 31-39y), Hispanic ethnicity (OR = 1.51; 95% CI, 1.2-1.9, reference: Non-Hispanic White), non-HMO insurance (private: OR = 1.48; 95% CI, 1.1-2.0, public/self pay: OR = 1.84; 95% CI 1.3-2.5), and hematologic malignancies (OR = 3.11; 95% CI 2.6-3.8, reference: solid tumors). Conclusions: AYA oncology decedents spent 40 days in the hospital in their last year of life, with average costs approaching $150,000 per patient. Subgroup with high utilization had distinct sociodemographic and clinical characteristics and non-specialty center admissions increased as death approached. This demonstrates the need for availability of palliative care at non-specialty centers. Whether these disparities and admission patterns represent goal-concurrent care needs to be examined.