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
Dietary advice, the provision of timely nutritional support and the alleviation of diet-related issues, should be an essential component of a holistic approach to palliative and end-of-life care, ...adjusted to account for the stage in the patient's journey, including prognosis. With an ageing population and increasing numbers of people living with not just one life-limiting disease but several, the dietary management of these patients is becoming more complex. This article considers the issues patients and families experience, how nurses can play a key role in identifying and alleviating nutrition- and diet-related issues in palliative care, including the use of tools to screen, assess and guide nutrition conversations and interventions. The content of the article is mostly drawn from the literature relating to palliative cancer care, knowledge derived from stakeholder engagement, clinical observations in a dietetic role in a hospice setting and qualitative research on the role of diet in palliative care as perceived by patients, carers, and health professionals.
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 U.S. palliative care model adds another layer of specialized care to a complex, expensive health care environment, and there are too few palliative care specialists to meet demand. Distinguishing ...primary from specialist palliative care would improve quality of care.
Palliative care, a medical field that has been practiced informally for centuries, was recently granted formal specialty status by the American Board of Medical Specialties. The demand for palliative care specialists is growing rapidly, since timely palliative care consultations have been shown to improve the quality of care, reduce overall costs, and sometimes even increase longevity.
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The field grew out of a hospice tradition in which palliative treatment was delivered only at the end of life, but its role has expanded so that palliative care specialists now also provide palliative treatment in the earlier stages of disease alongside disease-directed . . .
BACKGROUND AND PURPOSE—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.
METHODS—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.
RESULTS—The palliative care needs of patients with serious or life-threatening stroke and their families are enormouscomplex 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.
CONCLUSIONS—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.
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