Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships.

Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .

Implementation of a Perinatal Hospice Program.

BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHODS: The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULTS: The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.

Palliative care clinicians' knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS).

OBJECTIVES: To examine palliative care clinicians' level of knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS). METHODS: Regional postal survey of palliative care clinicians working in hospices in the East of England, undertaken in April 2015. Clinicians' level of knowledge was assessed by their response to 7 factual questions. Data regarding self-reported levels of confidence in applying the Safeguards was collected, alongside information regarding the number of times they had used DoLS in practice. A free-text section invited additional comments from participants. RESULTS: There were 47 responses from 14 different organisations; a response rate of 68%. Respondents included consultants, specialty and associate specialists, registrars, nurses and social workers. Higher self-reported confidence and training in the use of DoLS was associated with higher factual knowledge. Consultants had the highest level of knowledge, training and experience. Doctors of other grades, nurses and social workers recorded less knowledge and experience and scored lower in the knowledge sections. The free-text comments revealed difficulty applying the Safeguards in practice, particularly among the consultant responses, based around several themes: insufficient guidance on how to use the Safeguards, process after death, uncertainty as to relevance to palliative care and delays in assessments. CONCLUSIONS: Clinicians working in palliative care have good levels of knowledge of the DoLS. Despite this concerns were raised, particularly by consultants; uncertainty as to when they should be used and the relevance of the Safeguards in clinical practice. Further guidance should be given to clinicians working in this specialty to ensure that clinical practice is both lawful and in the patients' best interests.

"Death is inevitable - a bad death is not" report from an international workshop.

Palliative care is an approach meant to improve the quality of life of patients facing life-threatening illness and to support their families. An international workshop on palliative care took place in Caesarea, Israel under the auspices of the National Institute for Health Policy Research on July 4-5th, 2018, with the goal of discussing challenges to the development and integration of palliative care services in Israel. At the workshop, both national and international figures in the field of palliative care and health policy addressed several issues, including truth telling, religious approaches to end of life care, palliative care in the community, pediatric palliative care, Israel's Dying Patient Act, the Ministry of Health's National Plan for palliative care, and challenges in using advance directives. We summarize the topics addressed, challenges highlighted, and directions for further advancement of palliative care in the future, emphasizing the critical role of the Ministry of Health in providing a framework for development of palliative care.

REALIZATION OF THE HUMAN RIGHT TO PALLIATIVE CARE IN UKRAINE: PROBLEMS AND LEGAL ISSUES (REVIEW).

The aim of the study is to analyze individual legal problems of the implementation of the human right to palliative care. To achieve this goal, statistical data on the number of palliative patients, their access to medical services were analyzed. The absence of reasons for limiting the patient's right to receive palliative care, as such a right is a fundamental human right, is substantiated. An analysis of the understanding of the legal construction of "palliative care" in the scientific literature, national and international legal documents was carried out. It was revealed that the terms "hospice care", "end-of-life-care", "respite care" are components of a precise definition - "palliative care". Two groups of subjects that ensure the human right to this type of medical care are identified, their powers are indicated. In the course of the research it was established that palliative patients, more often than other patients, need medical care, including children. This category of patients faces the following problems: incomplete providing of high-quality free medical palliative care; insufficient number of palliative and hospice departments for such patients; palliative care does not meet international standards (logistical support for palliative departments, there are no specialists of a multidisciplinary team); there is no special training for medical personnel working with incurable patients; painkillers (non-narcotic and narcotic) drugs for relieving pain syndrome of such patients are not provided in full volume; there is no cooperation of state authorities in the field of palliative care with public and charitable organizations; palliative patients do not have access to free legal services (pensions, inheritance).

Life-sustaining treatment and palliative care in patients with liver cirrhosis - legal, ethical, and practical issues.

With the enactment of the 'Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life' (Act No. 14013) in Korea, there is growing concern about the practicality of this law. In this review, we discuss definitions, ethics, and practical issues related to this law.

[New legal regulations for palliative care with implications for politics and practice]. / Neue gesetzliche Regelungen für die Palliativversorgung und ihre Implikationen für Politik und Praxis.

In December 2015 two different laws were adopted. Both are of importance for palliative care. One of the laws criminalizes commercial, "business-like" assisted suicide (§ 217 German Criminal Code), the other one aims to improve hospice and palliative care in Germany. Through the latter far-reaching changes in Social Code Books V and XI, as well as of the Hospital Finance Act have been made. This new Act to Improve Hospice and Palliative Care (HPG) focuses, amongst others, on: (a) Better funding of hospice services, by raising the minimum grant for patients in inpatient hospices paid per day by the health insurance funds by about 28.5%, and for outpatient hospice services by about 18%; (b) further development of general outpatient nursing and medical palliative care, and the networking of different service providers; (c) introduction of an arbitration procedure for service provider agreements to be concluded between the health insurance funds and the teams providing specialized home palliative care (SAPV); (d) the right to individual advice and support by the health insurance funds; (e) care homes may offer their residents advance care planning programs to be funded by the statutory health insurers; (f) palliative care units in hospitals can be remunerated outside the DRG system by per diem rates; (g) separate funding and criteria for multi-professional palliative care services within a hospital.While little concrete impact on hospice and palliative care can be expected following the new § 217 German Criminal Code, the HPG provides a good basis to improve care. For this purpose, however, which complementary and more concrete agreements are made to put the new legal regulations into practice will be crucial.

International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide.

BACKGROUND: Reports about regulations and laws on Euthanasia and Physician Assisted Suicide (PAS) are becoming increasingly common in the media. Many groups have expressed opposition to euthanasia and PAS while those in favor argue that severely chronically ill and debilitated patients have a right to control the timing and manner of their death. Others argue that both PAS and euthanasia are ethically legitimate in rare and exceptional cases. Given that these discussions as well as the new and proposed laws and regulations may have a powerful impact on patients, caregivers, and health care providers, the International Association for Hospice and Palliative Care (IAHPC) has prepared this statement. PURPOSE: To describe the position of the IAHPC regarding Euthanasia and PAS. METHOD: The IAHPC formed a working group (WG) of seven board members and two staff officers who volunteered to participate in this process. An online search was performed using the terms "position statement", "euthanasia" "assisted suicide" "PAS" to identify existing position statements from health professional organizations. Only statements from national or pan-national associations were included. Statements from seven general medical and nursing associations and statements from seven palliative care organizations were identified. A working document including a summary of the different position statements was prepared and based on these, an initial draft was prepared. Online discussions among the members of the WG took place for a period of three months. The differences were reconciled by email discussions. The resulting draft was shared with the full board. Additional comments and suggestions were incorporated. This document represents the final version approved by the IAHPC Board of Directors. RESULT: IAHPC believes that no country or state should consider the legalization of euthanasia or PAS until it ensures universal access to palliative care services and to appropriate medications, including opioids for pain and dyspnea. CONCLUSION: In countries and states where euthanasia and/or PAS are legal, IAHPC agrees that palliative care units should not be responsible for overseeing or administering these practices. The law or policies should include provisions so that any health professional who objects must be allowed to deny participating.

The Effect of Pediatric Palliative Care Policy on Hospice Utilization Among California Medicaid Beneficiaries.

CONTEXT: California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice care as children near end of life. OBJECTIVES: The aim of this study was to examine the effect of the palliative care policy on hospice utilization for children and their families was investigated. METHODS: Using 2007 and 2010 California Medicaid data, a difference-in-difference analysis was conducted to analyze hospice use (i.e., hospice enrollment, hospice length of stay) changes for children who resided in pediatric policy counties relative to those who did not. The sample of children in California who died with a life-threatening serious illness in 2007 and 2010 equaled 979 children. RESULTS: More than 10% of children enrolled in hospice care with an average of less than 3 days of hospice care. The palliative care policy did not have any effect on hospice enrollment. However, the policy was positively associated with increasing days in hospice care (incidence rate ratio = 5.61, P < 0.05). The rate of hospice length of stay increased by a factor of 5.61 for children in palliative care counties compared with children unaffected by the policy. CONCLUSION: The pediatric palliative care policy was associated with longer lengths of stay in hospice once the children were enrolled. Policies promoting palliative care are critical to ensuring access to hospice care for children.

Cost Analysis and Policy Implications of a Pediatric Palliative Care Program.

CONTEXT: In 2010, California launched Partners for Children (PFC), a pediatric palliative care pilot program offering hospice-like services for children eligible for full-scope Medicaid delivered concurrently with curative care, regardless of the child's life expectancy. OBJECTIVES: We assessed the change from before PFC enrollment to the enrolled period in 1) health care costs per enrollee per month (PEPM), 2) costs by service type and diagnosis category, and 3) health care utilization (days of inpatient care and length of hospital stay). METHODS: A pre-post analysis compared enrollees' health care costs and utilization up to 24 months before enrollment with their costs during participation in the pilot, from January 2010 through December 2012. Analyses were conducted using paid Medicaid claims and program enrollment data. RESULTS: The average PEPM health care costs of program enrollees decreased by $3331 from before their participation in PFC to the enrolled period, driven by a reduction in inpatient costs of $4897 PEPM. PFC enrollees experienced a nearly 50% reduction in the average number of inpatient days per month, from 4.2 to 2.3. Average length of stay per hospitalization dropped from an average of 16.7 days before enrollment to 6.5 days while in the program. CONCLUSION: Through the provision of home-based therapeutic services, 24/7 access to medical advice, and enhanced, personally tailored care coordination, PFC demonstrated an effective way to reduce costs for children with life-limiting conditions by moving from costly inpatient care to more coordinated and less expensive outpatient care. PFC's home-based care strategy is a cost-effective model for pediatric palliative care elsewhere.

Politics and palliative care: Antigua and Barbuda.

Dion Smyth's review of the internet for palliative nursing.

[Hospice palliative care policy in Taiwan: past developments and future perspectives].

The duty of medical personnel is to save lives, cure diseases, relieve suffering, and promote health. Medical personnel care for their patients from birth to death. At the end of terminal care, medical personnel should maintain a religious / holistic commitment to their patients to "remove their suffering and provide happiness" as much as possible. Mackay Hospital opened the first hospice in Taiwan in 1990. Financial coverage of hospice care by the National Health Insurance, the enactment of the Hospice Palliative Act, the attention of Hospital Accreditation to hospice care, and the establishment of the system of clinical chaplaincy have all contributed to the development of hospice palliative care in Taiwan. Application of the Taiwan Coma Scale has been shown to decrease the use of futile life sustaining treatments in the ICU. The author hopes that nurses may further expand community hospice care services to help facilitate the peaceful dying of terminal patients at home.