Availability Of Palliative Care Research Articles

P011: Discerning perceived barriers and facilitators to goals of care discussion in the emergency department: A survey of emergency physicians and residents

Introduction: Patients presenting to the Emergency Department (ED) may require clarification of their goals of care (GOC) to ensure they receive treatments aligned with their values. However, these discussions can be difficult to conduct for multiple reasons, including lack of time in a busy ED, competing priorities and a limited relationship with the patient. Few studies have examined the perceived challenges faced by Emergency Physicians in conducting GOC discussions. This study sought to contextualize and discern the barriers and facilitators to having these conversations as reported by Emergency physicians. Methods: An interdisciplinary team of Emergency Medicine, Palliative Care and Internal Medicine providers developed an online survey comprised of multiple choice, Likert-scale and open-ended questions to explore four domains of GOC discussions: training; communication; environment; and personal beliefs. Invitations and scheduled reminders were sent to 275 ED physicians at six academic sites in a Canadian urban centre, including 49 EM residents. Results: 105 (46%) staff physicians and 23 (47%) residents responded with similar representation from all sites. Differences were reported in the frequency of GOC discussions: 59% of staff physicians conduct several per month whereas 65% of residents conduct less than one per month. Most agreed that GOC discussions are within their scope of practice (92%), they feel comfortable (96%), and are adequately trained (73%) to have them; however, 66% reported difficulty initiating GOC discussions. 73% believed that admitting services should conduct GOC discussions, yet acuity was noted in the comments as a major determinant with initiating GOC discussions by ED physicians. Main barriers identified were lack of time, chaotic environment, lack of advanced directives and the inability to reach substitute decision makers. 54% of respondents indicated that the availability of 24-hour Palliative Care consults would facilitate GOC discussions in the ED. Conclusion: Emergency physicians are prepared to conduct goals of care discussions, but often believe they should instead be conducted by the patient’s admitting service. Multiple perceived barriers to goals of care discussion in the ED were identified, and a majority of respondents felt that the availability of Palliative Care in the ED may facilitate these discussions.

The availability/accessibility gap of palliative care and supportive care services at 40 National Cancer Institute-designated cancer centers.

122 Background: All NCI-designated, comprehensive cancer centers report having consultative palliative care services alongside six other supportive care services. Inaccuracies in the understanding of these services among frontline office staff may undermine their accessibility to patients. We investigated how easily new patients could access these services when first contacting a major cancer center. Methods: We used a ‘mystery shopper’ format to simulate calls made by a family member of a recently diagnosed patient. We used a standardized call script, describing a female patient, age 58, recently diagnosed with inoperable liver cancer. We called each center four times on different days and evaluated quantitative and qualitative components. Descriptive statistics were calculated for each quantitative measure. Results: We placed 160 calls to 40 NCI-designated cancer centers. 38.2% of callers were unable to receive complete information about supportive care services. Overall, only 37.6% of callers (60.8% of those reaching someone who could answer questions) were told all 7 supportive care services were offered. In 9.5% of calls, call recipients gave an answer other than “yes” to whether the cancer center offered palliative care. Callers were told regarding palliative care: that it was for end of life patients only (2 calls), that there weren’t doctors who focused on symptom management (3), its availability depends on review of medical records (2), or that the call recipient was unsure either of the availability of palliative care (10), or did not know what the term meant (2). Availability responses other than “yes” were obtained in the following frequencies: multidisciplinary approach (14.6%), patient navigation (12.1%), genetic assessment (9.5%), psychological services (7.6%), and cancer education services (6.4%). Conclusions: Despite the stated availability of seven key supportive care services, accessibility was limited in one-third of calls. In about 10% of cases where a person was reached, the call recipient was unable to confirm that palliative care was offered. Further research is needed to close the availability vs. accessibility gap in oncology palliative and supportive care.

Abstract 123: Attitudes and Availability of Palliative Care Within Institutions Providing Mechanical Circulatory Support Device Implantation: A National Survey

Objectives: The 2013 International Society for Heart and Lung Transplantation (ISHLT) guidelines recommend, and the Centers for Medicare and Medicaid Services (CMS) conditions of participation mandate, inclusion of a palliative care (PC) specialist in care of patient who have received mechanical circulatory support devices (MCSD) as destination therapy. It is unclear to what extent MCSD care is consistent with these recommendations, or how that care is operationalized. Methods: We surveyed PC and MCSD coordinators/clinicians at Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) centers using Qualtrics™ web-based software, or via phone, to identify institutional PC and MCSD program characteristics and clinician attitudes about role and utilization of PC in this patient population. Using literature review, expert panel, and current MCSD guidelines, we developed 3 surveys: MCSD center institutional characteristics (15 items), PC program characteristics at those sites (23 items), and both MCSD and PC clinicians’ perceptions of the role of specialist and generalist PC (31 items). Cardiology clinicians answered an additional 7 items about their level of confidence performing PC tasks for patients with advanced cardiac disease. Results: Thirty-nine percent (55 of 140) of INTERMACS centers responded. More than half of MCSD programs were established by 2003; however, most PC programs were not established until 2007. MCSD programs (n=45) reported referring a mean of 78% of patients with MCSD to PC; more than 88% (39 of 44) had a formal protocol for referral, and virtually all reported positive working relationships between MCSD and PC clinicians. All respondents agreed with 2013 ISHLT guidelines for PC involvement during pre-implantation evaluation. Regarding end-of-life, nearly 32% (14 of 44) of institutions did not have a specific MCSD deactivation protocol; however 48% (21 of 44) of respondents “always” consulted with PC when a decision to deactivate was made. Cardiology respondents reported the lowest confidence levels in managing delirium, anxiety, and depression; however, 88% (14 of 16) reported discussing end-of-life preferences during MCSD evaluation. Conclusion: Although selection/respondent bias is an important limitation of these results, these respondents agreed with and reported enacting ISHLT and CMS recommendations for including PC in MCSD evaluation. Nevertheless, there was less consensus on clinicians’ roles and confidence levels with providing PC following MCSD implantation and at end-of-life versus during the pre-implantation period. Clinical Implications: Findings from this survey can enable cardiovascular clinicians to evaluate how PC involvement impacts care for patients with MCSD; however, metrics to evaluate patient and system outcomes are yet to be systematically developed and measured.

1531 Availability of palliative care in Georgia

1531 Availability of palliative care in Georgia

Physician-assisted suicide and/or euthanasia: Pragmatic implications for palliative care [corrected

Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated-particularly around ethical and legal issues--and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community. We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized. We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered. Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide.

Opportunities for improved end-of-life (EOL) care for adult patients with advanced cancer: Results of a longitudinal assessment of care provided by Quality Oncology Practice Initiative (QOPI) participants.

132 Background: End of life care of patients with advanced cancer has received recent attention because of evidence of widespread variation in utilization of aggressive therapies and interventions and possible suboptimal use of palliative care and hospice services. QOPI, the ASCO sponsored quality assessment program, has been available to all United States physician members since January 2006 and has assessed EOL care since its inception. The current analysis explores whether the increased national focus on EOL and increased availability of palliative care and hospice services has resulted in improvements in EOL care as reported by QOPI participants. Methods: Data was aggregated across all EOL care quality measures for 9 sequential semi-annual QOPI collection periods from 2008 through 2012. Trends were analyzed among rates of eligible patients related to hospice enrollment and timing of enrollment, palliative care referrals, discussions about hospice and palliative care, and chemotherapy administration at the end of life. The Cochran-Armitage trend test was performed to determine the significance of trends and differences in measure performance over time. Results: From Fall 2008 to Fall 2012, the rate of hospice enrollment for appropriate patients improved by 7.4% [51.8% to 59.2%; p<0.0001] and the rate of hospice enrollment or palliative care referral improved by 5.6% [63.3% to 68.9%; p<0.0001]. Modest improvements were seen in the rates of hospice enrollment more than 3 and 7 days before death [2.8%, 2.6%], discussion of hospice or palliative care with patients not referred for these services within the last 2 months of life [2.7% increase; 19% to 21.7%], and chemotherapy administration within the last 2 weeks of life [2.4% improvement from 13.7% to 11.3%]. Conclusions: Despite modest increases in the rate of hospice enrollment and palliative care referrals over time, EOL care for adult patients with cancer associated with QOPI practices remains suboptimal. Opportunities exist to increase more meaningful participation in hospice and palliative care and to reduce exposure to chemotherapy near death.

Opportunities for improved end-of-life (EOL) care for adult patients with advanced cancer: Results of a longitudinal assessment of care provided by Quality Oncology Practice Initiative (QOPI) participants.

9537 Background: End of life care of patients with advanced cancer has received recent attention because of evidence of widespread variation in utilization of aggressive therapies and interventions and possible suboptimal use of palliative care and hospice services. QOPI, the ASCO sponsored quality assessment program, has been available to all United States physician members since January 2006 and has assessed EOL care since its inception. The current analysis explores whether the increased national focus on EOL and increased availability of palliative care and hospice services has resulted in improvements in EOL care as reported by QOPI participants. Methods: Data was aggregated across all EOL care quality measures for 9 sequential semi-annual QOPI collection periods from 2008 through 2012. Trends were analyzed among rates of eligible patients related to hospice enrollment and timing of enrollment, palliative care referrals, discussions about hospice and palliative care, and chemotherapy administration at the end of life. The Cochran-Armitage trend test was performed to determine the significance of trends and differences in measure performance over time. Results: From Fall 2008 to Fall 2012, the rate of hospice enrollment for appropriate patients improved by 7.4% [51.8% to 59.2%; p<0.0001] and the rate of hospice enrollment or palliative care referral improved by 5.6% [63.3% to 68.9%; p<0.0001]. Modest improvements were seen in the rates of hospice enrollment more than 3 and 7 days before death [2.8%, 2.6%], discussion of hospice or palliative care with patients not referred for these services within the last 2 months of life [2.7% increase; 19% to 21.7%], and chemotherapy administration within the last 2 weeks of life [2.4% improvement from 13.7% to 11.3%]. Conclusions: Despite modest increases in the rate of hospice enrollment and palliative care referrals over time, EOL care for adult patients with cancer associated with QOPI practices remains suboptimal. Opportunities exist to increase more meaningful participation in hospice and palliative care and to reduce exposure to chemotherapy near death.

Minnesota Rural Palliative Care Initiative: Building Palliative Care Capacity in Rural Minnesota

Significant gaps exist in the availability of palliative care in rural hospitals and communities, even though rural populations are often disproportionately elderly and chronically ill. Few studies have examined what models of palliative care would be sustainable in a rural community. We studied the effects of a novel approach to palliative care program development with 10 rural Minnesota community teams over 18 months. The Minnesota Rural Palliative Care Initiative (MRPCI) included a three-prong framework consisting of community capacity theory, a learning collaborative model, and the National Quality Forum (NQF) Preferred Practices for Palliative and Hospice Care Quality. MRPCI confirmed the feasibility of building palliative care capacity in rural communities using this framework. By the end of the 18 months, all 10 teams had identified a target population, developed and refined an action plan, and included at least two strategies to address community needs or gaps related to NQF preferred practices. Only one community had an existing palliative care program at the start of the MRPCI. During the course of the collaborative, five additional communities built a core team to implement a palliative care program. Palliative care development is necessary in rural communities, and envisioning a program that combines structure, accountability, customized guidance, tools, and networking across settings is essential for success.

They Suffer in Silence

ABSTRACTAll India Institute of Medical Sciences, New Delhi, receives patients from all over India. This narrative describes the suffering of cancer patients who are unable to access pain relief and palliative care at their native places and have to repeatedly travel long distances to get morphine—all because of lack of awareness and availability of palliative care in North India, and the restrictions on availability of morphine due to stringent, outdated narcotic regulations.

When Death Precedes Birth: Experience of a Palliative Care Team on a Labor and Delivery Unit

With increasing recognition and availability of palliative care, interdisciplinary palliative care teams continue to discover novel opportunities to enhance patient-centered care and improve hospital staff satisfaction. As a new palliative care consultation service in a large urban academic tertiary care setting, we found unanticipated palliative care needs on the labor and delivery unit. Women experiencing sudden intrauterine death, and the health care providers who care for them, have unique palliative care needs. In some circumstances an interdisciplinary palliative care team, may help to address acute grief and provide ongoing staff support. Case examples of our palliative care team's experience are instructive.

Knowledge, beliefs, and concerns about opioids, palliative care, and homecare of advanced cancer patients: a nationwide survey in Japan

Patients' knowledge, beliefs, or concerns about opioids, palliative care, and homecare can be potential barriers to providing quality palliative care. The primary aim of this study was to clarify knowledge about opioids, beliefs about palliative care, and concerns about homecare in advanced cancer patients. An anonymous questionnaire was sent to 1,619 outpatients with advanced cancer at 25 hospitals in four different regions of Japan. The respondents were asked to report their knowledge about opioids, beliefs about palliative care, and concerns about homecare, in addition to the levels of their sense of security regarding receiving cancer care in the region. A total of 925 responses were received. In total, 28% believed that opioids are addictive and/or shorten life; 52% believed that palliative care is only for terminally ill patients; 75% agreed that being taken care of at home puts a heavy burden on the family; and 61% agreed that home-visit services cannot respond to sudden changes in a patient's condition. Levels of patients' sense of security were significantly higher in those who agreed that "opioids can relieve most pain caused by cancer" "palliative care relieves pain and distress", "palliative care is provided along with chemotherapy and/or radiation therapy", and "pain can be alleviated as effectively through home-visit services as it can at the hospital", and those who disagreed with the statements that "home-visit services cannot respond to sudden changes in a patient's condition" and "being taken care of at home puts a burden on the family". Advanced cancer patients frequently had incorrect knowledge about opioids, a belief that palliative care is only for terminally ill patients, and concerns about homecare, especially the family burden and responses to sudden changes. Providing appropriate information about the safety of opioids, the availability of palliative care during the entire course of the disease, and realistic information about homecare is of marked importance to promote patients' sense of security.

International Perspective: Outcomes of Palliative Oncology

Accompanying the ascendance of cancer as a leading cause of death worldwide is a new set of global health priorities focused on palliative care--the relief of symptoms and suffering, optimization of functional status, and quality of life for those with advanced, potentially life-limiting illnesses. In high-income countries, palliative care improves outcomes for patients, caregivers, provider organizations, and health systems. Data are not yet available to demonstrate similar benefits in low- and middle-income countries, where access to even the most basic palliative interventions (eg, opioids for pain management) is inadequate and unevenly distributed. This article describes current global disparities in the availability of palliative care. We make the case for international prioritization of palliative care as a critical strategy for improving outcomes for people with cancer and their caregivers worldwide.

Palliative care referrals after lung transplantation in major transplant centers in the United States*

Although lung transplantation is a widely used treatment modality for patients with end-stage lung disease, its long-term outcomes are limited. Including palliative approaches in the care of lung transplant recipients may be beneficial; however, systematic information regarding the utilization of palliative care services for lung recipients is lacking. Of the 27 transplant centers meeting the inclusion criteria (an annual lung transplant volume >or=15 for the past 5 years and the availability of palliative care or pain services at the center), 74 clinicians representing either the transplant or palliative care program from 18 centers completed surveys. Both transplant and palliative care clinician respondents strongly favored the idea of integrating palliative care into lung transplant care. However, the number of palliative care referrals made during the last year was low (<or=5 per center). The three most frequently endorsed reasons for palliative care referrals were end-of-life planning, uncontrolled pain and symptoms, and limited functional status. The average length of survival after referral was <30 days. Palliative care clinicians considered misconceptions that palliative care meant "end-of-life care" as a major barrier, whereas transplant clinicians identified uncertainty about recipients' prognoses, the perception that palliative care precludes aggressive treatment, and difficulty in discussing palliative care with recipients and family as barriers. Despite clinicians' positive attitudes toward integrating palliative and lung transplant care, actual utilization of palliative care services is low. Collaborative efforts to enhance communication between the two programs are needed to clarify misconceptions and promote understanding between the programs.

Oregon's Experience: Evaluating the Record

Prior to passage of the Oregon Death with Dignity Act, opponents of assistance in dying argued that legalization would have serious harmful consequences. Specifically, they argued that the quality and availability of palliative care would decline, that the harms of legalization would affect certain vulnerable groups disproportionately, that legal assisted dying could not be confined to the competent terminally ill who voluntarily request assistance, and that the practice would result in frequent abuses. Data from Oregon's decade-long experience decisively refute the first three predictions. As to abuses, the record is not quite as clear, but if an appropriate framework for analysis is utilized, the most reasonable conclusion is that the risks of abuse do not outweigh the benefits of legalization. To the extent projected harmful consequences are relevant to the debate over legalization, Oregon's experience argues in favor of legalization of assistance in dying.

Palliative care is not yet a well-defined product within the Dutch healthcare insurance system

In the Netherlands, the quality and availability of palliative care has improved markedly within the last decade. However, many open questions remain concerning the position of palliative care as an insurable product on the Dutch healthcare market. Therefore, we analysed the policies of all private Dutch healthcare insurance companies as well as the public insurance policy for extraordinary medical costs. We studied how and which parts of palliative care were reimbursed in 2007. We observed a huge variability in costs and reimbursement regulations reflecting a rapid turnover of products for palliative care due to various new developments on this specific field of medical care. We conclude that a better definition of the product 'palliative care' is necessary for patients, health care providers and insurance companies.

Back to our roots: palliative care in the clinical setting.

For the last ten years I have been involved in conducting research in palliative care across a variety of health care sectors in the Australian context. I have come to regard myself as a recent participant in palliative care after reading Lewis' (2007) book on Medicine and care of the dying: A modern history. His chapter on the development of palliative care services provides a comprehensive outline of the history of palliative care globally. Lewis highlights the remarkable achievements of palliative care champions across the western world. The efforts of many to recognise the needs of the dying and provide appropriate care, as articulated and practiced by Dame Cicely Saunders in the United Kingdom, created a ripple of change and led to a holistic philosophy of palliative care. Lewis's book demonstrates how far we have come to enact this philosophy and improve care of the dying.These champions of a systematic approach to care of the dying pressured health professionals and governments alike to broaden the focus of health care from cure to care. Through my own Australian research I have witnessed the influence of federal and state governments on increasing the availability of palliative care through a policy of'mainstreaming'. This policy aims to ensure that palliative care is available for all Australians rather than only for individuals located in urban areas close to a hospice or community palliative care service. It is evident that such an approach to care has also been adopted in other countries such as Sweden and UK.In Australia in the late 1990s when 'mainstreaming' began there was concern among the palliative care community that their philosophy and principles would be diluted, misinterpreted or even abandoned, in other health care sectors. Certainly the research Professor Street and I (Street & Blackford 2001) conducted at that time suggested that there were some inherent dangers in expecting all practitioners to provide palliative care within their own health care setting. It was evident that practitioners working in palliative care units located in acute care settings grappled with providing high quality endof-life care within an overarching philosophy of cure at all costs. In aged care facilities there was conflict with a philosophy of 'living in place' when a person was dying. In practice, living in place meant that health professionals needed to recognise that the aged care facility was now the elderly person's home. This encompassed the principles of the rights of older people to choose their care and be involved in decision making. Yet what happens when a person no longer is 'living in place' but 'dying in place'? Do they stay or go to a palliative care facility? When our research took us to the Australian bush, we found that to address palliative care needs of the local community a rural health service had created a palliative care space with facilities for the family to stay so they could be close to their loved one. Such space could also be converted to a birthing unit. The irony was not lost on us that limitations of resources meant that it was a shifting space from which a child entered the world and others departed.Since the introduction of 'mainstreaming' much has been done in Australia to educate and support health care professionals to be able to provide palliative care in various health care settings. The release of the 'Guidelines for a Palliative Approach in Aged Care Settings' (Australian Government Department of Health and Ageing 2004); programs such as PEPA (Program of Experience in Palliative Approach) (http://pepa education.com) which supports health professionals to undertake work placement in a palliative care service; as well as the work of various Palliative Care peak bodies such as Palliative Care Australia and Palliative Care Victoria, has lead to a further broadening of the availability of palliative care for all Australians.However in a climate of such success we cannot be complacent. …

The Caring Connections Project

Palliative care, with its focus on symptom management, patient-centered goals, preparation for life's end, and preservation of quality of life in the face of advancing illness, is a rapidly advancing component of mainstream American medicine. Yet, access to palliative care is often lacking in the community setting and may be further hindered by the presence of healthcare disparities that impact the poor. This article presents a unique approach to assuring the availability of palliative care to Medicaid patients receiving case management services. This descriptive article describes the evolution of a palliative care management pilot program, the Caring Connections Program, beginning with the initial planning and progressing through implementation and provision of services to 56 persons. "Lessons learned" are shared to enable other providers to develop similar programs with success. Patient profiles and intervention strategies are offered to illustrate the work accomplished.

A Teenager who Wanted to Die

‘But how is it actually done?’ It was one of those conversations about euthanasia that Dutch physicians are often drawn into when they travel abroad. Each time the struggle is...

The Challenge of Informed Consent

Euthanasia was legal in the Northern Territory, Australia, between July 1, 1996 and March 25, 1997. Four citizens died under the ROTI Act. 1 Terminal illness was only defined as a death that would occur “in the normal course and without the application of extraordinary measures.” Two medical practitioners were required to certify that the patient was of sound mind and making his or her decision freely, voluntarily and after due consideration. A psychiatrist needed to confirm that the patient was not suffering from a treatable clinical depression resulting from the illness. The Regulations required that the patient be provided with information about the availability of palliative care.