Table of Contents
Overview
Definition and Purpose
Palliative care is a patient and family-centered approach designed to optimize quality of life by addressing suffering associated with serious illnesses. It provides relief from pain and other distressing symptoms, irrespective of the curability of the condition.[2.1] The primary goal is to enhance the quality of life for patients and their families by meeting physical, intellectual, emotional, social, and spiritual needs.[4.1] The World Health Organization describes palliative care as a multidisciplinary approach involving an interprofessional team, including physicians, nurses, social workers, chaplains, and pharmacists, to address the complex needs of patients with serious illnesses.[5.1] This team works collaboratively to alleviate physical, psychological, and spiritual suffering, supporting patients in achieving their personal goals and preferences.[5.1] Particularly crucial for patients with advanced and life-limiting illnesses, palliative care offers essential support in managing complex symptoms and facilitates shared decision-making in line with the patient's values.[3.1] Originating from the modern hospice movement of the 1960s, the field has evolved significantly and continues to develop as a recognized specialty worldwide.[6.1]Goals of Palliative Care
Palliative care is designed to enhance the quality of life for patients with serious illnesses and their families by addressing a comprehensive range of needs, including physical, emotional, psychological, and spiritual aspects. This holistic approach is underscored in Domain 3 of the Clinical Practice Guidelines for Quality Palliative Care, which emphasizes the significance of mental health alongside physical care, acknowledging that psychological and psychiatric needs are as crucial as physical care but often overlooked.[7.1] To provide effective palliative care, it is essential to understand patients' emotional triggers and offer holistic support. By respecting and validating emotions, healthcare professionals can foster an environment conducive to open communication.[9.1] This communication should be characterized by openness, respect, cultural safety, and agreement, facilitating effective discussions about expectations with patients, their families, and caregivers.[10.1] Maintaining such communication is crucial for collaboration among internal and external care providers involved in end-of-life and palliative care.[10.1] Addressing emotional needs is pivotal in enhancing the quality of life for patients in palliative care. Providing emotional and practical support to families is equally beneficial, aiding them in navigating the challenges of serious illness.[8.1] Integrating palliative care into treatment plans from the time of diagnosis is critical, as early referral to a palliative care team can offer essential support and improve overall patient outcomes.[13.1] Palliative care is inherently interdisciplinary, involving a team of healthcare professionals, including doctors, nurses, social workers, and chaplains, who collaborate to meet the diverse needs of patients and their families.[17.1] This comprehensive approach ensures that all aspects of a patient's well-being—physical, emotional, and spiritual—are addressed, aiming to alleviate the symptoms and stress associated with serious illness.[18.1] As the U.S. population ages and the prevalence of chronic illnesses rises, the demand for palliative care is expected to increase significantly, underscoring the need for effective strategies to integrate this care into healthcare systems.[16.1] The ongoing evolution of healthcare models, particularly in response to changes accelerated by the COVID-19 pandemic, highlights the importance of developing robust frameworks for palliative care integration.[15.1]In this section:
History
Milestones in Palliative Care Development
The recognition of palliative care as a medical specialty is marked by key milestones that reflect evolving societal attitudes towards death and dying. A pivotal moment was the founding of St. Christopher's Hospice by Dame Cicely Saunders in 1967, recognized as the first modern hospice. This initiative reshaped healthcare professionals' approach to life-limiting illnesses, emphasizing dignity, compassion, and effective pain management in end-of-life care.[72.1] The hospice movement, emerging in the 1960s and 1970s in the UK, responded to the societal denial of death, which had led to a taboo on discussing death, the medicalization of dying, and the segregation of dying patients.[75.1] This movement advocated for a humane approach to end-of-life care, supported by Saunders' insistence on scientific rigor in treatment testing.[72.1] In the United States, the opening of the Connecticut Hospice in 1974 marked a significant development, aligning with a growing recognition of the limitations of aggressive treatments for terminal illnesses.[93.1] This shift was part of a broader societal change acknowledging the importance of quality of life and compassionate care at the end of life. Advocacy efforts have been crucial in the evolution of palliative care. Organizations like the National Coalition for Hospice and Palliative Care have influenced policies to enhance access to quality care for patients and families.[83.1] The World Health Organization's 2014 resolution emphasized strengthening palliative care as part of comprehensive healthcare, reinforcing that access to good palliative care is a basic human right.[92.1] These milestones collectively illustrate the transformation in the perception and practice of palliative care, highlighting the importance of advocacy, research, and compassionate approaches to end-of-life care.Evolution of Palliative Medicine
Palliative care has undergone significant transformation since its inception, evolving from a focus on end-of-life care to a comprehensive approach that addresses the needs of patients at any stage of a serious illness. The modern hospice movement, initiated in the 1960s by figures such as Dr. Cicely Saunders, laid the foundation for this evolution by advocating for an interdisciplinary team to alleviate the "total pain" experienced by dying patients, emphasizing a holistic approach that considers physical, emotional, and social dimensions of care.[49.1] The formal recognition of palliative care as a medical specialty began with Dr. Balfour Mount's introduction of the term in 1974, marking a pivotal milestone.[47.1] By the 1970s, palliative care was defined as a distinct area of medical practice, synonymous with providing comprehensive support to patients and their families.[49.1] The establishment of institutions such as the Harvard Medical School Center for Palliative Care in 1999, co-founded by Susan Block and J. Andrew Billings, further solidified the field's development, leading to its recognition as a medical subspecialty in the United States in 2006.[50.1] Palliative care is now recognized as appropriate at any age and at any stage of a serious illness, and it can be provided alongside curative treatments, adding a vital layer of support for patients and their families.[52.1] The demand for palliative care has surged in recent years, driven by factors such as the aging population and the increasing prevalence of chronic illnesses, trends exacerbated by the COVID-19 pandemic.[53.1] The integration of medical technology has become increasingly important in enhancing patient outcomes in palliative care. Recent studies highlight the impact of smart technologies in improving care, underscoring the necessity of considering technological, ethical, and practical factors to ensure these advancements benefit patients.[57.1] The current state of digital technology in palliative care is being systematically analyzed, focusing on various intervention types, their effects on patient outcomes, and the challenges associated with their implementation.[58.1] This evolution necessitates ongoing education and collaboration among healthcare professionals to manage medical technology safely and effectively, thereby maintaining patient safety.[56.1] Additionally, palliative care continues to emphasize addressing the physical, emotional, and social needs of patients, which is essential for improving their quality of life.[55.1] The family-centric elements of palliative care have also evolved, adapting to the changing needs of patients' families by providing reassurance, assisting in navigating the healthcare system, and offering information and advice.[63.1] This holistic approach reflects a growing understanding of the integral role that both patients and their families play in the palliative care process.Recent Advancements
Integration of Technology in Palliative Care
The integration of technology in palliative care has significantly transformed patient engagement and access to support services for families during critical times. Telepalliative care, utilizing telehealth, has been in practice for over twenty years, primarily in high-income countries, facilitating virtual connections between patients, families, and palliative care providers.[118.1] This approach enhances active family involvement in care, contributing to increased comfort and peace of mind for both patients and their loved ones.[118.1] Digital technologies have shown considerable potential to improve patients' quality of life by alleviating symptom burden through methods such as remote monitoring, real-time feedback, and personalized interventions.[116.1] The feasibility and acceptability of these technologies among palliative care patients are high, with only a small number reporting mild adverse effects.[116.1] Technologies enabling bidirectional communication have been associated with positive effects on patients' sense of agency, allowing them to feel more in control of their care.[117.1] Telehealth has also facilitated regular virtual sessions with palliative care psychologists, providing essential emotional support to patients and their families. These sessions address critical issues such as anxiety, depression, and concerns related to end-of-life care.[119.1] Additionally, family members can participate in virtual care planning meetings, ensuring their active involvement in decision-making processes.[119.1] Overall, telehealth models of palliative care represent a patient-focused approach that increases access to specialist care, allowing individuals with life-limiting illnesses to receive support closer to home.[120.1]Innovative Practices and Approaches
In recent years, innovative practices in palliative care have significantly transformed patient management and support. The field has evolved into a comprehensive, interdisciplinary approach that prioritizes comfort and quality of life for patients with serious illnesses. This transformation involves the collaboration of healthcare professionals, including physicians, nurses, social workers, and chaplains, to provide holistic care tailored to the needs of patients and their families.[104.1] A key advancement is the emphasis on early palliative care, which has been shown to improve both quality of life and survival rates for patients with advanced cancer. A meta-analysis indicated that patients receiving care from outpatient specialty palliative care teams experienced a 14% increase in one-year survival and a median overall survival benefit of 4.56 months.[105.1] This highlights the importance of timely intervention and the role of specialized teams in managing complex symptoms and enhancing patient outcomes. Recent advancements have also positively impacted the decision-making process for patients and their families. Family caregivers play a crucial role in aligning care with the patient's end-of-life preferences. Open discussions about care options can facilitate consensus between patients and family members, thereby improving the overall quality of care.[103.1] Structured programs supporting family involvement in advance care planning have been developed to enhance communication and decision-making confidence among families.[102.1] Despite these advancements, challenges remain, particularly in training and education for healthcare providers. Research has highlighted gaps in palliative care training among medical professionals, with many lacking formal fellowship training in this specialty.[99.1] Addressing these educational needs is essential for ensuring that palliative care is universally accessible and effectively integrated into healthcare systems.In this section:
Clinical Significance
Impact on Patient Quality of Life
Palliative care is essential in enhancing the quality of life (QOL) for patients with life-limiting illnesses and their families. Its primary goal is to alleviate suffering by addressing the physical, psychosocial, and spiritual needs of patients through an interprofessional team approach, involving physicians, nurses, social workers, chaplains, and pharmacists working collaboratively to optimize care and support.[141.1] Research shows that integrating palliative care significantly affects outcomes such as symptom burden, emotional well-being, and overall survival.[138.1] The World Health Organization defines palliative care as specialized medical care aimed at improving QOL for patients with serious illnesses, emphasizing the importance of addressing physical symptoms alongside psychological and spiritual distress.[141.1] As patients near the end of life, palliative care focuses on aggressive symptom management and psychosocial support.[140.1] Emotional well-being is a critical component, especially for cancer patients. Techniques like open communication, emotional support, relaxation methods, and music therapy help manage emotional distress and enhance QOL.[142.1] The NURSE acronym (Name, Understand, Respect, Support, Explore) aids clinicians in empathic communication, fostering a supportive environment for emotional expression.[143.1] Spiritual care is also vital in addressing the holistic needs of patients and families. Interventions such as dignity therapy and life-review improve emotional symptoms, spiritual well-being, and overall QOL.[148.1] Addressing the spiritual needs of patients and caregivers is crucial for enhancing well-being and improving palliative care delivery.[147.1] To evaluate the effectiveness of palliative care interventions in enhancing QOL, quality measurement and improvement initiatives are essential. These initiatives aim to provide effective, patient- and family-centered care for those facing advanced illnesses, particularly at the end of life, by identifying areas for improvement and assessing new interventions.[150.1] Quality of life questionnaires are instrumental in assessing patient care needs, monitoring quality within health systems, measuring clinical outcomes in trials, and estimating the utility and cost-effectiveness of interventions.[151.1] However, some questionnaires, like the SEIQOL-DW, may not allow for quantitative measurement of minimal clinically important differences in QOL, limiting their effectiveness in gauging therapeutic responses.[151.1]In this section:
Palliative Care Models
Settings for Palliative Care Delivery
A variety of organizational models for palliative care exist, each tailored to different settings and patient needs. These models include home-based care, nursing homes, outpatient clinics, assisted living facilities, and web-based delivery systems, reflecting the diverse environments in which palliative care can be provided.[177.1] Research has demonstrated that home-based palliative care models yield positive outcomes, including an increased likelihood of patients dying at home.[183.1] A systematic review has highlighted the significant benefits of these approaches for both patients and their families.[178.1] Additionally, the five models of palliative care are designed to complement one another, thereby optimizing care along the disease continuum for patients with cancer and their caregivers.[181.1] Among these models, telehealth has emerged as a promising strategy, offering the potential to enhance access to palliative care in a cost-effective manner.[181.1] In long-term care settings, the integration of palliative care services has been hindered by a lack of resources and support.[177.1] However, systematic reviews have identified key elements that contribute to effective palliative care models across various settings. These include improved communication and coordination among healthcare providers, as well as the enhancement of palliative care skills among non-specialist staff.[180.1] The evolving landscape of palliative care necessitates a critical evaluation of existing models, particularly in light of demographic changes such as population aging and the increasing prevalence of life-limiting illnesses.[179.1] Policymakers are encouraged to consider evidence-based models that can inform reforms in palliative care delivery, ensuring that services are tailored to meet the unique needs of diverse patient populations.[179.1]In this section:
Challenges And Barriers
Access to Palliative Care Services
Access to palliative care services is significantly hindered by various challenges affecting both patients and healthcare providers. A primary issue is the variability in access, leading to many inpatients not receiving necessary care. Identifying these barriers is crucial for developing strategies to improve access for patients with palliative care needs.[217.1] In less developed healthcare systems, administrative barriers are particularly pronounced, especially regarding access to essential medications like opioids, which are critical for effective pain management. Ensuring access to multiple opioid options and appropriate adjuvant analgesics is essential for adequate pain relief.[218.1] Additionally, barriers to conducting high-quality research in palliative care exist, with a predominant focus on patient barriers while overlooking staff and organizational issues that can impede research involvement.[219.1] Specific challenges include a lack of time and skills among healthcare providers, insufficient education, and various patient and family expectations that complicate care delivery. Other significant barriers include financial constraints, lack of insurance coverage, and organizational policies that do not prioritize palliative care.[220.1] In intensive care units (ICUs), additional barriers such as family boundaries, cultural differences, and practical issues further complicate palliative care provision, although supportive behaviors and collaboration among healthcare professionals can serve as facilitators.[221.1] Systemic issues within the healthcare framework also hinder effective pain management in palliative care. The healthcare system is often designed around curative approaches rather than palliative care, leading to inadequate pain and symptom control at the end of life.[224.1] Ethnic and racial disparities in hospice and palliative care utilization further exacerbate these challenges, highlighting the need for targeted interventions to improve access and quality of care.[225.1] Addressing these systemic barriers requires a multifaceted approach that includes clinical care improvements, educational initiatives, and enhanced accessibility to resources.[226.1] Moreover, the knowledge and attitudes of healthcare providers significantly impact the quality of palliative care. Studies have shown that many clinicians lack adequate understanding of pain management, necessitating hospital-wide educational programs to enhance their skills and knowledge.[227.1] To foster a more effective palliative care environment, hospitals should prioritize increased knowledge among clinicians and patients, alongside a team-based approach to pain management that considers cultural factors.[227.1]In this section:
Future Directions
Trends in Palliative Care Research
Research in palliative care is evolving to address challenges and opportunities across different income levels. Future directions emphasize the integration of access, quality, and cost-effectiveness in palliative care models to enhance service delivery while reducing expenses.[253.1] A public health approach, combined with novel technologies like remote monitoring, is crucial for improving global access to palliative care, especially in low- and middle-income countries.[255.1] Advance Care Planning (ACP) is increasingly recognized as essential in palliative care, enabling individuals to document their life goals and medical treatment preferences. Despite its importance, only a third of individuals in the United States have established such plans, indicating a significant gap in awareness and implementation.[257.1] The success of future palliative care models will depend on their alignment with national policies and funding, alongside systematic processes to identify and address unmet needs.[258.1] Over the past two decades, palliative care has emerged as a promising approach for patients with life-threatening conditions, yet its expansion requires strategic research to inform clinical practice and public health policy.[259.1] Meta-analyses support the effectiveness of palliative care interventions on quality of life, though evidence on their impact on healthcare utilization and costs remains inconclusive.[260.1] Hospital-based palliative care interventions have shown potential in improving patient outcomes and reducing costs, but consistent reporting of outcome measures is needed.[261.1] Outcome measurement is increasingly recognized as essential for enhancing the quality and effectiveness of palliative care. Historically, assessments focused on care structures and processes, but current practices emphasize outcome measures for clinical, audit, and research purposes. These include monitoring symptom intensity, functional status, and quality of life, aiding decision-making, and facilitating communication between team members, patients, and families.[264.1] Palliative care has been shown to improve patient outcomes, particularly in symptom management, quality of life, and patient and family satisfaction, especially among populations with cancer, neurological diseases, and heart failure.[266.1] Various data collection tools measure patient and caregiver experiences in end-of-life care, including palliative and hospice care, which can be utilized for quality improvement.[267.1] This growing emphasis on measuring patient experiences reflects the importance of integrating feedback into palliative care practices, although specific studies on this integration are still developing.Policy Implications and Advocacy
Funding models are pivotal in the development and provision of palliative care services, especially as these services are integrated into mainstream healthcare systems. A systematic examination across various countries indicates that palliative care financing often involves a mixed-payer system, which can perpetuate existing inequities in service provision.[282.1] Despite recognizing the need for innovative funding mechanisms, comprehensive reporting on existing models and their effectiveness is notably lacking.[283.1] To improve accessibility and quality of palliative care, particularly for underserved populations, several policy changes and funding innovations have been proposed. These include adjustments to payment policies, such as reimbursing healthcare providers for goals of care conversations and establishing clearer reimbursement standards for palliative care services.[285.1] Additionally, integrating palliative care into broader healthcare contexts through incentives or bundled payments—such as incorporating palliative care within cancer care—has been suggested to enhance service delivery.[285.1] In low- and middle-income countries, the need for palliative care is particularly acute, with approximately 75% of unmet palliative care needs for adults located in these regions.[292.1] However, access remains limited, with only 12% of the global palliative care need currently being met.[292.1] The World Health Organization (WHO) emphasizes the importance of developing national palliative care policies that encompass policy, education, and drug availability.[291.1] These policies are crucial, especially given the higher incidences of conditions such as cancer and AIDS in developing countries, where patients would significantly benefit from palliative care.[293.1] Moreover, the public health approach to palliative care advocates for establishing home-based care as part of primary health care services.[296.1] This approach is essential in addressing the unique cultural and socioeconomic contexts of low- and middle-income countries, where adaptations may be necessary when implementing policies or clinical guidelines derived from high-income countries.[294.1] Strengthening national palliative care policies is a priority, addressing the lack of palliative care professionals and the need for better documentation and sharing of best practices.[295.1]In this section:
References
[2] Palliative care - Mayo Clinic — Overview Palliative care is specialized medical care that focuses on providing relief from pain and other symptoms of a serious illness. It also can help you cope with side effects from medical treatments. The availability of palliative care does not depend on whether your condition can be cured.
[3] Overview of palliative care and hospice services - PMC — Palliative care (PC) is a burgeoning multidisciplinary field focusing on the complex supportive care needs of patients with advanced and life‐limiting illness. • Palliative Care • Hospice Care • A subset of palliative care and/or hospice care In a seriously ill patient population often subject to repeated hospitalizations, all providers should address advanced care planning and basic symptom management, and PC teams can add value in the face of complex symptoms, limited prognosis, and complex care needs.7 Reasons to consider PC consultation are included in Table 3.6 Palliative care is a subspecialty focused on augmenting the care of patients with advanced and life‐limiting illnesses to support maximal symptom management, address psychosocial needs and engage in shared decision‐making in the context of a patient's goals, preferences, and values.
[4] Overview of palliative care - Supporting patients who opt not to have ... — Palliative care focuses on providing patients with relief from the physical and emotional symptoms of an illness and aims to support and improve quality of life for both the patient and their loved ones. The aim is to help people achieve the best quality of life they can, for as long as possible, and helping them to do what matters most to them. It is aimed at the prevention and relief of
[5] Palliative Care - StatPearls - NCBI Bookshelf — Continuing Education Activity The World Health Organization characterizes the field of palliative care as a form of specialized medical care that aims to optimize the quality of life and alleviate the suffering of patients with serious illnesses. Palliative care addresses the physical, psychosocial, and spiritual needs of patients with a serious illness, including but not limited to those with a life-limiting diagnosis, by employing an interprofessional team approach. A palliative team is comprised of a wide array of professionals, including the palliative physician, nurse, social worker, chaplain, and pharmacist. Function The primary goal of the interprofessional palliative care team is to improve the quality of life of patients and their families. Palliative care aims to alleviate all forms of suffering; in addition to physical suffering, it acknowledges spiritual, existential, and psychological suffering.
[6] A brief history of palliative care — Palliative care is a relatively new field of medicine. It grew out of the modern hospice movement in the 1960s, and its history is still being written today as it continues to evolve as a specialty in countries around the world. The term "palliative care" was first used in 1974 by Dr. Balfour Mount, a […]
[7] Mental Health in Palliative Care: Addressing Psychological and ... — In the journey of serious illness, the psychological and psychiatric needs of patients and their families are as vital as physical care but are often overlooked. Domain 3 of the Clinical Practice Guidelines for Quality Palliative Care shines a spotlight on these critical aspects, emphasizing the importance of mental health in holistic care.
[8] The Vital Role Social Work Plays in Palliative Care — Addressing emotional needs improves a person's quality of life in palliative care. Providing families with emotional and practical support is highly beneficial.
[9] Strategies for Effective Communication in Palliative Care - Doximity — In palliative care, clinicians seek to understand patients' emotional triggers to provide holistic support. ... By respecting and validating emotions, individuals nurture a supportive environment where open communication flourishes. ... Share your strategies below. Hailey Roumimper is an internal medicine resident in Washington, DC. She is a
[10] 5. Open and respectful communication | Palliative Care Blueprint — Communication that is open, respectful, culturally safe and agreeable enables effective conversations regarding expectations with the person, their family and carers. ... of care is maintained with both internal and external care providers who commonly collaborate on End of life and palliative care. This type of communication centres around
[13] Why and How to Integrate Early Palliative Care Into Cutting-Edge ... — We now know that early palliative care, palliative care integrated in harmony with cancer-directed treatment from the time of diagnosis, has benefits that are not limited to the last phase of life. Palliative care is now more broadly defined as specialized, team-based care focused on alleviating the symptoms and stress of serious illness for patients and families, which is appropriate at any
[15] Integrating Palliative Care in Ambulatory Care of Noncancer Serious ... — For U.S. health policy, as U.S. healthcare is currently moving to less visit-based models, with changes from the proposed Centers for Medicare and Medicaid Innovation Primary Care First and Serious Illness Population models and changes in care accelerated by the COVID-19 pandemic, models for integrating palliative care may become of increased
[16] Integration of Palliative Care Into All Serious Illness Care as A Human ... — The US population is aging, and structural barriers to care (such as systemic racism and disparities in insurance coverage and access to care) increase the burdens of chronic illness. The need for palliative care for those dying from serious illness is expected to increase approximately 87% over the next 4 decades, disproportionately affecting
[17] Integrating Holistic Approaches into Palliative Care — Both palliative care and a holistic approach focus on comprehensive patient care. Palliative care teams, consisting of doctors, nurses, social workers, chaplains and specialists, work together to meet the diverse needs of patients and families. ... For example, John, a retired carpenter with terminal lung cancer, joined a men's support group
[18] Holistic Approaches in Palliative Care - Kinder Caring — Palliative care embodies the essence of holistic healthcare, prioritising the patient's physical, emotional, and spiritual wellbeing during the challenging journey with a life-limiting illness. In Australia, palliative care services strive to deliver comprehensive and compassionate support that aligns with the individual's values and needs.
[47] A brief history of palliative care — Palliative care is a relatively new field of medicine. It grew out of the modern hospice movement in the 1960s, and its history is still being written today as it continues to evolve as a specialty in countries around the world. The term "palliative care" was first used in 1974 by Dr. Balfour Mount, a surgical oncologist at the Royal
[49] From margins to centre: a review of the history of palliative care in ... — Palliative care and hospices have developed rapidly since the late 1960s. The pioneering work of Cicely Saunders was instrumental in drawing attention to the end-of-life care needs of patients with advanced malignant disease. Palliative care began to be defined as a subject of activity in the 1970s and came to be synonymous with the physical, social, psychological, and spiritual support of
[50] History | HMS Center for Palliative Care - Harvard University — Co-founded by palliative care pioneers The Harvard Medical School Center for Palliative Care was co-founded in 1999 by Susan Block, MD, and the late J. Andrew Billings, MD. Drs. Block and Billings were early pioneers of palliative care, and together became national leaders in the field's development. Palliative care was recognized as a medical sub-specialty in the US in 2006.
[52] Palliative Care: An Historical Perspective | Hematology, ASH Education ... — Learn how palliative care evolved from hospice care to a subspecialty of medicine that relieves suffering of patients with life-limiting illnesses. Explore the key figures, events, and milestones that shaped the development of palliative care in the US and Canada.
[53] Integrating Palliative Care into Nursing Care - PMC — Abstract The need for palliative care in our health care system has exponentially increased in the past few years as a result of the COVID-19 pandemic, the aging population, and the increasing number of people living with serious illnesses. While nurses play a critical role in delivering palliative care, many lack confidence and knowledge, causing practice gaps in the clinical and
[55] Enhancing nursing's role in community-based palliative care: closing ... — Background Nursing-led palliative care is essential for improving the quality of life of patients with life-limiting illnesses by addressing their physical, emotional and social needs. Effective symptom management, facilitated by nursing interventions, plays a critical role in this process. Aim This study aimed to evaluate the effectiveness of a community-based palliative care program designed
[56] District nurses' conceptions of medical technology in palliative ... — It also demanded self-reliance and an awareness of managing medical technology in a patient-safe way. Medical technology provided freedom for the palliative patients. Conclusions: To maintain patient safety, more education and collaboration with palliative care teams is needed.
[57] The use of smart technologies for enhancing palliative care: A ... — The study emphasises the significant impact of smart technologies in improving palliative care. It emphasises the importance of considering technological, ethical, and practical factors to ensure that these advancements truly enhance palliative care. This research has important implications for healthcare professionals and policymakers, indicating a need for a patient-centred palliative care
[58] A scoping review of digital technology applications in palliative care — This review aims to systematically analyze the current state of digital technology in palliative care, focusing on intervention types, their impact on patient outcomes, and the challenges to their implementation. These insights will inform future research and guide the development of innovative, patient-centered approaches to palliative care.
[63] Availability and stability of palliative care for family members of ... — The family-centric elements of the palliative care system included adjusting care to the evolving needs of patients' families, including acknowledging and providing reassurance over the role as family member, assisting in navigating the healthcare system, acknowledging and exploring patient's condition, providing information and advice
[72] Dame Cicely Saunders - PMC - PubMed Central (PMC) — Cicely Saunders founded the first modern hospice and, more than anybody else, was responsible for establishing the discipline and the culture of palliative care. She introduced effective pain management and insisted that dying people needed dignity, compassion, and respect, as well as rigorous scientific methodology in the testing of treatments.
[75] P2-4 Discourses on death and dying and their effects on palliative care ... — Palliative care originated in the hospice movement, which began in the 1960's and 70's in the United Kingdom, and spread quickly worldwide. This movement was directed broadly against medical and societal 'denial' of death. It was asserted that this denial of death resulted in three main ills: a taboo on conversation about death, the medicalization of death, and the segregation of the
[83] Advocacy - National Coalition for Hospice and Palliative Care — Our Advocacy Efforts The National Coalition for Hospice and Palliative Care (NCHPC) advocates for patients and their families with serious or life-limiting illnesses on matters affecting equitable access to quality palliative care and hospice care.
[92] Development of Palliative Care: Past, Present, and Future — Access to good palliative care is a basic human right. The design and implementation of public health models as national or regional palliative care programs, and the policy proposed by the WHO in the World Health Assembly Resolution WHA67.19 in 2014: “Strengthening of palliative care as a component of comprehensive care throughout the life course.” Palliative care in Catalonia 1990–95. Eur J Palliat Care. Gómez-Batiste X, Murray SA, Keri T, Blay C, Boyd K, Moine S, Gignon M, Van den Eynden B, Leysen B, Wens J, Engels Y, Dees M, Costantini M. Palliative care. World Health Organization Collaborating Center for Public Health Palliative Care Programs, Catalan Institute of Oncology, Barcelona, Spain World Health Organization Collaborating Center for Public Health Palliative Care Programs, Catalan Institute of Oncology, University of Vic-Central University of Catalonia, Barcelona, Spain
[93] History Of Palliative Care Plus 9 Innovative Practices From The World — The first hospice in the U.S., the Connecticut Hospice, opened in 1974, marking a pivotal moment in the development of palliative care in the country. At about the same time, the medical community began to recognize the limitations of aggressive, curative treatments for certain terminal illnesses.
[99] Getting Comfortable With Death: Evolution of the Care of the Dying ... — The future evolution of hospice and palliative medicine will likely involve better integration with health care systems and comprehensive use of early palliative care for serious illness. Research on hospice and palliative care is increasing with support from organizations such as the National Palliative Care Research Center, the National Institutes of Health, and the American Cancer Society. A recent study of Missouri hospice medical directors found that none had palliative fellowship training, few had specific training in palliative care, and very few were board-certified in hospice and palliative care.22 In fact, Missouri is the only state without a formal palliative medicine fellowship.23 While several institutions are ready to begin a fellowship, the lack of Graduate Medical Education (GME) funding makes starting a new program difficult. 25.Missouri Hospice & Palliative Care Association.
[102] Effects of a structured, family-supported, and patient-centred advance ... — Secondary outcomes include proportions of new ACP documentations and family-reported perception of whether the patient’s end-of-life (EOL) care preference was respected; patient’s decisional conflict; quality of communication; family’s decision-making confidence; family’s anxiety and depression; and patients’ and family members’ satisfaction of the intervention. This study will provide rigorous scientific evidence on the effectiveness of a structured and well-design family-supported, patient-centred ACP programme for adult palliative care patients and their family members in the hospital setting.
[103] The Role of Family in End-Of-Life Care Decisions - h2hhc.com — The Role of Family in End-Of-Life Care Decisions The Role of Family in End-Of-Life Care Decisions What is the role of family in end-of-life care decisions? Discussions should aim to align care decisions with the patient's end-of-life preferences, allowing for both the patient’s and families' emotional well-being to be factored in. What are the roles and responsibilities of family caregivers in end-of-life care? Family caregivers are the backbone of end-of-life care for patients, especially when individuals prefer to spend their final days at home. The presence and involvement of family in end-of-life care decisions remain one of the most significant factors influencing the quality of care and well-being of patients. The Role of Family in End-of-Life Care Decisions
[104] Interprofessional Alchemy: Discovering the Anatomy of Successful ... — The nexus of palliative care as a distinct specialty within healthcare is interprofessional collaboration. The contributions of chaplains, social workers, physicians, nurses, and other professionals are recognized as vital to the successful palliative care of people experiencing serious illness and their families (Ferrell et al, 2018, NCP Guidelines).
[105] Impact of interprofessional collaborative practice in palliative care ... — For example, a meta-analysis results showed a 14% increase in 1-year survival, and median overall survival benefit of 4.56 months in patients with advanced cancer who were received palliative care by outpatient specialty palliative care team . Moreover, quality of life and cost-effectiveness were improved significantly.
[116] A scoping review of digital technology applications in palliative care — Digital technologies in palliative care demonstrate significant potential to improve patients’ quality of life and alleviate symptom burden through remote monitoring, real-time feedback, and personalized interventions. The studies included in this review indicate that digital technologies have high feasibility and acceptability among palliative care patients, with only a small number of patients experiencing mild adverse effects, such as dizziness and dry eyes, during use . Future research should focus more on refining study design, validating long-term effects, and exploring personalized applications to fully assess and showcase the potential value of digital technologies in palliative care. A mixed-methods pilot study of ‘LIFEView’audiovisual technology: virtual travel to support well-being and quality of life in palliative and end-of-life care patients.
[117] Capturing patient experiences of care with digital technology to ... — Technologies facilitating bidirectional communication were particularly associated with positive effects on patients' sense of agency. ... conditions, 17,18 or on exploring health information technology for patient engagement in their care within different ... how patients feel about the ability of palliative care services to meet their needs
[118] Patient and families' perspectives on telepalliative care: A systematic ... — Introduction Telepalliative care involves the use of telehealth in palliative care, allowing patients and families to connect virtually with palliative care providers. 1 It has existed for over twenty years, largely in high-income countries (HIC). 1, 2 Telepalliative care can increase active family involvement in palliative care 3, 4 leading to increased comfort and peace of mind among
[119] Evolution of Telehealth—Its Impact on Palliative Care and Medication ... — Telehealth facilitated regular virtual sessions with a palliative care psychologist, offering emotional support to both the patient and his family, addressing anxiety, depression, and concerns related to end-of-life care. Family members participated in virtual care planning meetings, ensuring their active involvement in decision-making processes.
[120] Telehealth-facilitated palliative care enables more people to die at ... — Telehealth-facilitated models of palliative care are a patient-focused way to deliver specialist care in or closer to home for people with a life-limiting illness. Telehealth can increase access to palliative care and support people experiencing
[138] Association Between Palliative Care and Patient and Caregiver Outcomes ... — Importance: The use of palliative care programs and the number of trials assessing their effectiveness have increased. Objective: To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers.
[140] The Role of Palliative Care at the End of Life - PMC — The ultimate goal of palliative care is to improve quality of life for both the patient and the family, regardless of diagnosis. Although palliative care, unlike hospice care, does not depend on prognosis, as the end of life approaches, the role of palliative care intensifies and focuses on aggressive symptom management and psychosocial support.
[141] Palliative Care - StatPearls - NCBI Bookshelf — Continuing Education Activity The World Health Organization characterizes the field of palliative care as a form of specialized medical care that aims to optimize the quality of life and alleviate the suffering of patients with serious illnesses. Palliative care addresses the physical, psychosocial, and spiritual needs of patients with a serious illness, including but not limited to those with a life-limiting diagnosis, by employing an interprofessional team approach. A palliative team is comprised of a wide array of professionals, including the palliative physician, nurse, social worker, chaplain, and pharmacist. Function The primary goal of the interprofessional palliative care team is to improve the quality of life of patients and their families. Palliative care aims to alleviate all forms of suffering; in addition to physical suffering, it acknowledges spiritual, existential, and psychological suffering.
[142] Improving Emotional Well-being in Cancer Palliative Care — In conclusion, emotional well-being is an important aspect of palliative care for cancer patients. By prioritising open communication, emotional support, physical activity, relaxation techniques, music therapy, social support, and spiritual support, healthcare providers can help patients manage their emotional distress and improve their quality
[143] Strategies for Effective Communication in Palliative Care — In the realm of palliative medicine, the acronym NURSE (Name, Understand, Respect, Support, Explore) serves as a helpful tool for clinicians engaging in empathic communication and navigating the complex terrain of patient emotions. In palliative care, clinicians seek to understand patients' emotional triggers to provide holistic support. Common phrases in palliative medicine that demonstrate respect include, “I am impressed with how well you have handled the treatments,” or if talking with a patient’s family member, “I greatly respect how you have been such a strong advocate for your loved one.” By respecting and validating emotions, individuals nurture a supportive environment where open communication flourishes. In palliative medicine, clinicians use probing questions to uncover patients’ emotions and concerns, facilitating comprehensive care.
[147] Spiritual needs of family caregivers in palliative care — This study underscores the importance of integrating spiritual support into palliative care practices. Recognizing and addressing caregivers' spiritual needs is crucial for enhancing their well-being and improving the quality of palliative care delivery.
[148] Efficacy of spiritual interventions in palliative care: An umbrella ... — Findings show that spiritual care interventions especially dignity therapy and life-review may be effective for improving outcomes including spiritual wellbeing, emotional symptoms, quality-of-life and physical symptoms in people receiving specialist palliative care.
[150] Evaluation of the Measuring and Improving Quality in Palliative Care ... — Quality measurement and improvement initiatives are essential for palliative care programs to deliver effective and patient- and family-centered care to patients with advanced and serious illness and at the end of life. 1 Quality measurement efforts can identify areas for improvement of care, evaluate the impact of new initiatives, and improve
[151] Quality of Life in Palliative Care - PMC - PubMed Central (PMC) — The SEIQOL-DW reflects the patient’s capacity to value domains other than health in life, despite having health problems The main drawback to using this type of questionnaire is that one cannot quantitatively measure the minimal clinical important difference (MCID) in QOL to gauge therapeutic responses to interventions nor can it be used to estimate utility in cost-effectiveness analyses (20). QOL questionnaires may be used to assess patient care needs in clinical settings, provide quality monitoring in health systems, measure clinical outcomes in clinical trials, and estimate utility and cost-effectiveness of clinical interventions.
[177] PDF — Background: Integrating palliative care services in long-term care lag because of the lack of support and resources. ... There are five models of palliative care based on the setting where the service is provided: home-based, nursing home, outpatient clinics, assisted living facility, and web-based delivery.
[178] PDF — A systematic review of models of palliative care in different settings found positive benefits, including the increased likelihood of dying at home,for home-based models. 18. ... Background . A wide range of organisational models of palliative care exist and cover a range of different settings and conditions. In this review, palliative care has
[179] Elements of effective palliative care models: a rapid review — Background Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. Method A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April
[180] Elements of effective palliative care models: a rapid review — Elements of effective models of palliative care. This review identified a number of dynamic elements that have been integrated into palliative care models in a range of care settings to enable access to appropriate services, improve communication and coordination between providers, enhance palliative care skills of non-specialist and informal
[181] Models of Palliative Care Delivery for Patients With Cancer — The five models of palliative care complement one another to optimize care along the disease continuum for patients with cancer and their caregivers. ... Telehealth has the potential to provide greater palliative care access in a cost-effective manner. Furthermore, clinical initiatives and research studies are exploring how palliative care can
[183] PDF — A systematic review of models of palliative care in different settings found positive benefits, including the increased likelihood of dying at home,for home-based models. 18. ... Comparison of integrated outpatient palliative care with standard care in patients with Parkinson disease and related
[217] Barriers for Adult Patients to Access Palliative Care in Hospitals: A ... — Background. Access to palliative care services is variable, and many inpatients do not receive palliative care. An overview of potential barriers could facilitate the development of strategies to overcome factors that impede access for patients with pallia-tive care needs. Aim. To review the current evidence on barriers that impair, delay, or
[218] Barriers to Access to Palliative Care - PMC - PubMed Central (PMC) — In less developed health care systems, there may be additional administrative barriers to delivery of palliative care, particularly around access to opioids. Opioids are an essential tool for delivering adequate pain management, and all countries should ensure access to more than one opioid and appropriate adjuvant analgesics. There should be
[219] Understanding barriers and facilitators to palliative and end-of-life ... — Background Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to
[220] Investigating the challenges and barriers of palliative care delivery ... — The lack of time and skills, lack of education, patient and patient's family expectations, attitudes and safety and crisis management, dying and end-of-life problems, lack of patient insurance coverage, financial supplies and structures, patient's noncooperation, lack or shortage of facilities, patient's family resistance, current health system policies and practices, organizational and social barriers, patient community knowledge and culture, communication challenges including patient–doctor communication, lack of understanding the role and importance of palliative and supportive care and treatment-oriented of the health system, educated human forces, and available resources were the most important barriers and challenges in this field [Table 1].
[221] Barriers and facilitators in the provision of palliative care in adult ... — Several barriers and facilitators in providing palliative care in the ICU were identified and include lack of capabilities, family boundaries, practical issues, cultural differences. Facilitators of the provision of palliative care in an ICU include greater experience and supportive behaviors, i.e., collaborations between health care professionals.
[224] Pain Challenges at the End of Life - Pain and Palliative Care ... — However, despite the best intentions of clinicians, pain and symptom control at the end of life can still be suboptimal, predominantly because the entire healthcare system has been designed around cure of disease rather than palliation 4 and Pain Medicine has evolved from acute pain services, being involved predominantly with non-palliative
[225] End-of-Life Evaluation and Management of Pain — Unfortunately, pain and its management at the end of life are often inadequate. The involvement of supportive care/palliative medicine in the care of the dying patient can improve pain relief. Ethnic and racial disparities were noted in hospice and palliative care utilization amongst minorities.
[226] American Society for Pain Management Nursing and Hospice and Palliative ... — Elucidation of barriers to effective pain control in advanced disease allows targeted interventions; including those related to clinical care, education, accessibility, and research. As nurses, we must continuously advocate for humane and dignified care, promoting ethical, effective pain and symptom management at the end of life for all.
[227] Barriers and Solutions for Improving Pain Management Practices in Acute ... — A study assessing the knowledge and attitudes of doctors and nurses found that only 61% of the questions were answered correctly, necessitating hospital-wide educational programs to improve clinicians’ understanding of pain.10) Reassessment of the impact of educational interventions in terms of pain assessment, patient satisfaction, and improvement in knowledge, as well as the provision of access to evidence-based resources to maintain updated knowledge on pain assessment and management, is also recommended.11,12) To move toward a pain-free setting, hospitals should focus on increased knowledge among clinicians and patients and a team approach to implement consistent pain management strategies that considers cultural factors to tailor plans to the local population.
[253] PDF — Future Directions. Research and practice in palliative care needs to expand in new directions. The issue of access versus quality versus cost should become a synergy of access, quality, and lowered costs. Models of palliative care service delivery should be tested that integrate diagnosis, age, social role,
[255] Challenges and Future Directions of Palliative Care Globally — This chapter will describe the current and future challenges to palliative care development in low-, middle-, and high-income countries and the opportunities offered by adopting a public health approach and novel technologies, such as remote monitoring, and better engaging communities to increase global palliative care access. COVID-19, palliative care and public health. Using National Health Policies to improve access to palliative care medications in the community. The public health strategy for palliative care. Quality health services and palliative care report. Palliative care and the global goal for health. Worldwide Hospice and Palliative Care Alliance and World Health Organisation. The health care cost of palliative care for cancer patients: a systematic review. IMPACCT – Improving Palliative Aged Care Through Clinical Research and Translation, Faculty of Health, The University of Technology Sydney, Ultimo, NSW, Australia
[257] Advance care planning intervention improved end-of-life documentation ... — Only one in three people in the United States has a plan in place for their future health care.Many have misconceptions about ACP, which involves discussing and preparing for future medical decisions. The process can include creating legal documents, such as advance directives.. Led by researchers at Johns Hopkins — who noted that primary care settings play a key role in ACP — the SHARING
[258] Challenges and Future Directions of Palliative Care — The success of future palliative care models will be dependent upon them: being aligned with national policy (and often developing a national policy in the first place) and funding, having good systematic processes to identify and address unmet palliative care needs (Weissman and Meier 2011), and adopting dynamic and iterative practice
[259] Identifying Key Priorities for Future Palliative Care Research Using an ... — Over the past 2 decades, palliative care has emerged as a promising approach to addressing the needs and priorities of patients with life-threatening conditions. 1 Continued expansion of the field, however, will require strategic and high-quality research to guide clinical practice and public health policy. Although substantial strides have been made in advancing our knowledge in this area, 2
[260] The Cost-Effectiveness of Palliative Care: Insights from the PAL-HF ... — The beneficial impact of a majority of palliative care interventions on quality of life has been supported in meta-analyses of outpatient palliative care for advanced heart failure; however, the evidence for the impact of palliative care on healthcare utilization and cost of care is inconclusive. 6-8 Heart failure costs more than $34 billion
[261] Evidence on the economic value of end-of-life and palliative care ... — Hospital-based palliative care interventions may improve patient outcomes, healthcare utilization and costs. There is a need for greater consistency in reporting outcome measures, the informal costs of caring, and costs associated with hospice. Keywords: End-of-life care, Terminal care, Palliative care, Cost - effectiveness, Health care costs
[264] The Impact of Measuring Patient-Reported Outcome Measures on Quality of ... — Outcome measures are used in palliative care for clinical, audit, and research purposes. 8 In clinical care, outcome measures are used to: monitor symptom intensity, functional status, and quality of life; aid in decision making; facilitate communication between team members and patients/families; and evaluate effectiveness of treatments.
[266] Improving patient outcomes through palliative care integration in other ... — Palliative care has been increasingly shown to improve patient outcomes, in particular symptom management, quality of life and patient and family satisfaction. This has been shown within the care of people with cancer, neurological disease and heart failure but the methods by which palliative care is introduced earlier in the diagnosis is still
[267] Improving Care Experiences for Patients and Caregivers at End of Life ... — Several data collection tools are designed to measure patient and/or caregiver end-of-life care experiences, including both palliative or hospice care experiences, and be used for quality improvement. A 2012 review from the Agency for Healthcare Research and Quality (AHRQ)2 examined evidence on the effectiveness of interventions to improve outcomes of patients with advanced and serious illness, including PC and hospice care, identifying 17 studies that included measures of patient satisfaction/experience (2 hospice) and 4 with statistically significant improvements in PC communication across settings.2 Lendon et al13 literature review identified several publicly available surveys and measures of patient, family or informal caregiver experiences and satisfaction with care at the end-of-life covering a variety of content that could be used for quality improvement and research.
[282] Funding models in palliative care: Lessons from international experience — • Models of palliative care and funding flows in a range of countries are described in a consistent and systematic way for the first time. • This study demonstrates that palliative care financing is often characterised by a mixed-payer system, that provider pay- ment may perpetuate existing inequitable patterns in service provision and that
[283] (PDF) Funding models in palliative care: Lessons from international ... — As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can
[285] A Qualitative Inquiry on Palliative and End-of-Life Care Policy Reform ... — Fifteen (68%) respondents offered suggestions including adjustments or innovations supported by existing payment policy, such as reimbursing doctors for goals of care conversations, creating clearer standards around reimbursement for PC services (e.g., quality measures), and ways to integrate PC into health care contexts through incentives or bundled payments (e.g., bundling palliation within cancer care). One stated recommendation was to “align finances by making a health plan that has under its umbrella all the various providers that you might need, then effectively coordinate among the providers and monitor utilization to see who is doing it well.” The comprehensive, coordinated care described by respondents was proposed as part of the solution to the lack of general awareness and knowledge about PC in the health care setting.
[291] Palliative Care Gains Ground in Developing Countries — The WHO defines the palliative care public health model as having three basic components: policy, education, and drug availability. In developing countries, attention to palliative care has been minimal, since public health programs have focused largely on preventing and treating infectious diseases and malnutrition.
[292] International consensus-based policy recommendations to advance ... — The Global Atlas of Palliative Care reports that only 12% of the global palliative care need is currently being met; 64% of countries have extremely limited or no provision of palliative care services; about 75% of unmet palliative care needs for adults are in low- and middle-income countries; roughly 7% of the world's population in need of
[293] Palliative Care: A Public Health Priority in Developing Countries — Palliative care is an emerging specialist discipline worldwide with the majority of services located in developed countries. Developing countries, however, have higher incidences of cancer and AIDS and most of these patients would benefit from palliative care. While there is prominent coverage of this issue in the palliative care literature, there is limited coverage in the specialist public
[294] Ensuring quality of life in palliative care physiotherapy in developing ... — Keywords: palliative care, developing countries, quality of life, physiotherapy, ... adaptations may need to be made when adopting policies or clinical guidelines originating in high-income countries. Palliative care physiotherapy is becoming increasingly adopted for treating patients globally; however, it is still not widely used in resource
[295] Best practices in developing a national palliative care policy in ... — The development, strengthening, and implementation of national palliative care policies is a priority. Given the lack of a critical mass of palliative care professionals in the region and deficiency in documenting and sharing best practices as part of information critical for regional development, policy development becomes a complex process.
[296] PDF — 5. The public health approach in palliative care involves development of services including home based care as part of primary health care 6. Policies and recommendations for the implementation of palliative care as public health measures and a several detailed reports on how to put theory into practice