The Heart Failure Association of the European Society of Cardiology has published a previous position paper and various guidelines over the past decade recognizing the value of palliative care for ...those affected by this burdensome condition. Integrating palliative care into evidence‐based heart failure management remains challenging for many professionals, as it includes the identification of palliative care needs, symptom control, adjustment of drug and device therapy, advance care planning, family and informal caregiver support, and trying to ensure a ‘good death’. This new position paper aims to provide day‐to‐day practical clinical guidance on these topics, supporting the coordinated provision of palliation strategies as goals of care fluctuate along the heart failure disease trajectory. The specific components of palliative care for symptom alleviation, spiritual and psychosocial support, and the appropriate modification of guideline‐directed treatment protocols, including drug deprescription and device deactivation, are described for the chronic, crisis and terminal phases of heart failure.
Integrating palliative care throughout the heart failure trajectory
Background:
Early integration of palliative care into the management of patients with serious disease has the potential to both improve quality of life of patients and families and reduce healthcare ...costs. Despite these benefits, significant barriers exist in the United States to the early integration of palliative care in the disease trajectory of individuals with serious illness.
Aim:
To provide an overview of the barriers to more widespread palliative care integration in the United States.
Design and data sources:
A literature review using PubMed from 2005 to March 2015 augmented by primary data collected from 405 hospitals included in the Center to Advance Palliative Care’s National Palliative Care Registry for years 2012 and 2013. We use the World Health Organization’s Public Health Strategy for Palliative Care as a framework for analyzing barriers to palliative care integration.
Results:
We identified key barriers to palliative care integration across three World Health Organization domains: (1) education domain: lack of adequate education/training and perception of palliative care as end-of-life care; (2) implementation domain: inadequate size of palliative medicine–trained workforce, challenge of identifying patients appropriate for palliative care referral, and need for culture change across settings; (3) policy domain: fragmented healthcare system, need for greater funding for research, lack of adequate reimbursement for palliative care, and regulatory barriers.
Conclusion:
We describe the key policy and educational opportunities in the United States to address and potentially overcome the barriers to greater integration of palliative care into the healthcare of Americans with serious illness.
Oncology has come a long way in addressing patients' quality of life, together with developing surgical, radio-oncological and medical anticancer therapies. However, the multiple and varying needs of ...patients are still not being met adequately as part of routine cancer care. Supportive and palliative care interventions should be integrated, dynamic, personalised and based on best evidence. They should start at the time of diagnosis and continue through to end-of-life or survivorship. ESMO is committed to excellence in all aspects of oncological care during the continuum of the cancer experience. Following the 2003 ESMO stand on supportive and palliative care (Cherny N, Catane R, Kosmidis P. ESMO takes a stand on supportive and palliative care. Ann Oncol 2003; 14(9): 1335–1337), this position paper highlights the evolving and growing gap between the needs of cancer patients and the actual provision of care. The concept of patient-centred cancer care is presented along with key requisites and areas for further work.
The purpose of this statement is to delineate basic expectations regarding primary palliative care competencies and skills to be considered, learned, and practiced by providers and healthcare ...services across hospitals and community settings when caring for patients and families with stroke.
Members of the writing group were appointed by the American Heart Association Stroke Council's Scientific Statement Oversight Committee and the American Heart Association's Manuscript Oversight Committee. Members were chosen to reflect the diversity and expertise of professional roles in delivering optimal palliative care. Writing group members were assigned topics relevant to their areas of expertise, reviewed the appropriate literature, and drafted manuscript content and recommendations in accordance with the American Heart Association's framework for defining classes and level of evidence and recommendations.
The palliative care needs of patients with serious or life-threatening stroke and their families are enormous: complex decision making, aligning treatment with goals, and symptom control. Primary palliative care should be available to all patients with serious or life-threatening stroke and their families throughout the entire course of illness. To optimally deliver primary palliative care, stroke systems of care and provider teams should (1) promote and practice patient- and family-centered care; (2) effectively estimate prognosis; (3) develop appropriate goals of care; (4) be familiar with the evidence for common stroke decisions with end-of-life implications; (5) assess and effectively manage emerging stroke symptoms; (6) possess experience with palliative treatments at the end of life; (7) assist with care coordination, including referral to a palliative care specialist or hospice if necessary; (8) provide the patient and family the opportunity for personal growth and make bereavement resources available if death is anticipated; and (9) actively participate in continuous quality improvement and research.
Addressing the palliative care needs of patients and families throughout the course of illness can complement existing practices and improve the quality of life of stroke patients, their families, and their care providers. There is an urgent need for further research in this area.
Palliative care has been one of the most rapidly growing fields of health care in the United States in the past decade. The benefits of palliative care have now been shown in multiple clinical ...trials, with increased patient and provider satisfaction, equal or better symptom control, more discernment of and honoring choices about place of death, fewer and less intensive hospital admissions in the last month of life, less anxiety and depression, less caregiver distress, and cost savings. The cost savings come from cost avoidance, or movement of a patient from a high cost setting to a lower cost setting. Barriers to expanded use include physician resistance, unrealistic expectations of patients and families, and lack of workforce. The future of palliative care includes more penetration into other fields such as nephrology, neurology, and surgery; further discernment of the most effective and cost-effective models; and establishment of more outpatient services.
Context: Palliative care encompasses an interdisciplinary team, including mental health care professionals, to address psychological distress of cancer patients.
Objectives: To present the ...implementation of an outreach counseling program via videoconferencing or telephone to patients receiving care in an outpatient palliative care clinic and to compare patients using this service to those who only received psychological counseling in our outpatient clinic.
Methods: We conducted a retrospective chart review of cancer patients seen for psychology counseling services in an outpatient supportive care center between June 2015 and March 2017.
Results: We reviewed 2072 unique patients (52% of the total patients seen at the outpatient Supportive Care Center), who had 4567 total counseling encounters across outreach and outpatient settings. A total of 452 (22%) patients participated in a combination of outpatient and outreach counseling services. Patients who participated in outreach services had significantly more encounters (311 69% had two to five sessions) compared with those who had outpatient services only (1137 70% had one session only) (P < .001). Outreach patients also had shorter times between the initial and follow‐up encounters (median 14 days) compared with those who had outpatient services only (median 30 days) (P < .0001).
Conclusions: Outreach telehealth counseling services was found to enhance palliative care patient access to psychological counseling. These services represent an additional modality for providing continuous psychological care.
Clinicians need palliative care (PC) skills to provide good patient care. Primary PC (PPC) is the PC knowledge and skills provided by non-PC specialists and are distinct from specialist PC (SPC), the ...complex interventions provided by specialty trained clinicians. There is no consensus as to the specific PPC knowledge and skills that should be taught or the methods that should be used. We describe an educational system that incorporates a suite of tools that PC educators can easily adapt to the PC educational requests of training programs to evaluate the PPC educational needs of training programs and then to create customized educational programs that regularly adjusts to the input of trainees and faculty. We hope others can use this program to decrease the burden on the PC educators and provide a tailored PPC education program for training programs within their institutions.
Background:
Building palliative care capacity among all healthcare practitioners caring for patients with chronic illnesses, who do not work in specialist palliative care services (non-specialist ...palliative care), is fundamental in providing more responsive and sustainable palliative care. Varying terminology such as ‘generalist’, ‘basic’ and ‘a palliative approach’ are used to describe this care but do not necessarily mean the same thing. Internationally, there are also variations between levels of palliative care which means that non-specialist palliative care may be applied inconsistently in practice because of this. Thus, a systematic exploration of the concept of non-specialist palliative care is warranted.
Aim:
To advance conceptual, theoretical and operational understandings of and clarity around the concept of non-specialist palliative care.
Design:
The principle-based method of concept analysis, from the perspective of four overarching principles, such as epistemological, pragmatic, logical and linguistic, were used to analyse non-specialist palliative care.
Data sources:
The databases of CINAHL, PubMed, PsycINFO, The Cochrane Library and Embase were searched. Additional searches of grey literature databases, key text books, national palliative care policies and websites of chronic illness and palliative care organisations were also undertaken.
Conclusion:
Essential attributes of non-specialist palliative care were identified but were generally poorly measured and understood in practice. This concept is strongly associated with quality of life, holism and patient-centred care, and there was blurring of roles and boundaries particularly with specialist palliative care. Non-specialist palliative care is conceptually immature, presenting a challenge for healthcare practitioners on how this clinical care may be planned, delivered and measured.
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