Concept Of Palliative Care Research Articles

When the Goal Is Palliative Care

An analysis of the literature regarding palliative care of patients with wounds. Health care literature, including national and international reports, focusing on enhancing quality of life for individuals with wounds who are receiving palliative care. The literature on palliative care of patients with wounds is limited. Integration of palliative care concepts and chronic wound management is challenging; however, palliative care, which focuses on comfort and symptom management for quality of life, can provide the best quality care within the parameters of disease and individual patient wishes.

Palliative care in old age

With an aging population globally, and increasing numbers of older patients facing chronic illnesses, better palliative care in old age should be promoted.In this review we will Highlight the pressing need for better palliative care for older peopleAdvocate the concept of palliative care as applied to geriatrics and gerontologyReview current end-of-life care for older people with chronic disease, both non-cancer and cancerDiscuss the palliative-care approaches to common physical symptoms and psychospiritual distressHighlight advanced care planning and quality-of-life issues

Arrogance Ignorance Paradox

Journal of Palliative MedicineVol. 8, No. 5 Notes from the EditorArrogance Ignorance ParadoxCharles F. von GuntenCharles F. von GuntenSearch for more papers by this authorPublished Online:20 Oct 2005https://doi.org/10.1089/jpm.2005.8.898AboutSectionsPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail "Arrogance Ignorance Paradox." , 8(5), pp. 898–899FiguresReferencesRelatedDetailsCited byPrimary Care Residents Improve Knowledge, Skills, Attitudes, and Practice After a Clinical Curriculum With a Hospice26 June 2016 | American Journal of Hospice and Palliative Medicine®, Vol. 34, No. 8Communicating About Phase I Trials: Objective Disclosures Are Only A First Step4 April 2012 | The Oncologist, Vol. 17, No. 4The Care People Need and the Education of PhysiciansJournal of Clinical Oncology, Vol. 29, No. 36Creative Solution for Implementation of Experiential, Competency-Based Palliative Care Training for Internal Medicine Residents8 May 2011 | Journal of Cancer Education, Vol. 26, No. 3Survey of Palliative Care Concepts among Medical Students in India Parag Bharadwaj, M.S. Vidyasagar, Anjali Kakria, and U.A. Tanvir Alam25 June 2007 | Journal of Palliative Medicine, Vol. 10, No. 3Survey of Palliative Care Concepts among Medical Interns in India Parag Bharadwaj, M.S. Vidyasagar, Anjali Kakria, and U.A. Tanvir Alam25 June 2007 | Journal of Palliative Medicine, Vol. 10, No. 3IS THERE REALLY HOPE FOR THE FUTURE? GERIATRICS AND PALLIATIVE CAREJournal of the American Geriatrics Society, Vol. 54, No. 10 Volume 8Issue 5Oct 2005 InformationCopyright 2005, Mary Ann Liebert, Inc.To cite this article:Charles F. von Gunten.Arrogance Ignorance Paradox.Journal of Palliative Medicine.Oct 2005.898-899.http://doi.org/10.1089/jpm.2005.8.898Published in Volume: 8 Issue 5: October 20, 2005PDF download

Extending Palliative Care Is There a Role for Preventive Medicine?

Historically, the concept of palliative care has been limited to hospice and end-of-life services. Recently, palliative care has been expanded to emphasize its integration throughout an illness. We suggest that palliative care provides an opportunity to prevent illness. Palliative care providers can effectively reduce the risk of illness in families by employing methods and strategies of preventive medicine. We illustrate three such cases. Patients and survivors may benefit from appropriate recognition and referral to prevent potential medical, social, and psychological problems. For preventive medicine to become fully exploited by palliative care providers, curricula will need to be developed. Risk assessment indicators of heritable and acquired conditions will define core functions of this educational process. Relevant topics should encompass basic preventive medicine methods, methods to disseminate assigned risk to the palliative care team, and referral mechanisms to specialists with expertise in the identified area(s) of concern. Opportunities to integrate preventive care into end-of-life services will create a new dimension for comprehensive palliative care.

Comfort Care Principles for the High-risk Newborn

After completing this article, readers should be able to: 1. Apply palliative care principles in neonatal intensive care. 2. List the professionals who should be involved with palliative care programs. 3. Describe the focus of palliative care. 4. Describe the critical components of palliative care. The neonatal intensive care unit (NICU) remains one of the most sophisticated and technical environments in which children are treated. Medical, nursing, respiratory, and surgical care routinely are intensive, invasive, and at times aggressive as lifesaving interventions are provided to the most vulnerable of pediatric patients. Do comfort or palliative care measures have a place in the NICU? If so, for whom, and in what particular circumstances? This article addresses the important concept of comfort care for certain groups of newborns, the ethical principles underlying decisions for such care, and the appropriate family-centered provision of comprehensive palliative care in the NICU. Applying hospice (palliative care) concepts to the newborn initially was described in the United States in 1982. Clinicians in the NICU can endeavor to create an environment in which the highly technical care required for lifesaving or life-prolonging treatments and the “high touch” care of comfort-oriented, patient-centered, and family-friendly care can coexist and complement one another. Most NICUs are competent in caring for infants who die, but there are wide variations in the care measures provided for hopelessly ill newborns, and opportunities abound for improving the provision of comprehensive palliative care for dying newborns. Such care should include pain and symptomatic management, psychosocial support for family members, spiritual support for family members, and attention to the newborn’s quality of life and best interests as determined through a culturally sensitive, negotiated, family-centered approach (Figure ⇓). When such measures are the focus of care, everyone in the NICU stands to benefit, including the newborn patient, his or her family, and …

A concept analysis of palliative care in the United States.

The purpose of this analysis is to trace the evolution of the concept of palliative in the United States, explicate its meanings, and draw comparisons with other related concepts such as hospice care and terminal care. Rodgers' evolutionary method was used as an organizing framework for the concept analysis. Data were collected from a review of CINAHL, MEDLINE, CANCERLIT, PsycINFO and Sociological Abstracts databases using 'palliative care' and 'United States' as keywords. Articles written in the English language, with an abstract, published between 1965 and 2003 were considered. Data were synthesized to identify attributes, antecedents and consequences of palliative care. There has been a significant evolution in understanding of the palliative care concept in the United States over the last few decades, which has resulted in the emergence of new models of palliative care. Four attributes of the current palliative care concept were identified: (1) total, active and individualized patient care, (2) support for the family, (3) interdisciplinary teamwork and (4) effective communication. Results reinforce that cure and palliation are not mutually exclusive categories. The scope of palliative care has evolved to include a wide range of patient populations who may not be appropriately termed 'dying' but for whom alleviation of suffering and improvement of quality of life may be very relevant goals. The ultimate success of the new models of palliative care will eventually rest upon the commitment of health professionals to recognize and integrate the changing concept of palliative care into everyday practice.

Out-patient palliative care of children with cancer and their families

Pediatric palliative care is still in its beginning. Most children with life-threatening disorders succumb with incomplete symptom control under in-patient conditions. Due to the limited number of patients and large hospital-home distances the realization of out-patient concepts of palliative care especially for children and adolescents with cancer is purposeful and beneficial. In a pilot project such an a aforementioned concept of pediatric palliative care proved successfully working despite insufficient conditions. Guidelines of pediatric palliative care are to be defined at short notice in order to ascertain autonomy and mobility of patients aiming at highest possible quality of life. The recently initiated program of integrating ambulatory and in-patient care within the regulations set forth in Germany's last health care system reform offers the chance of palliative home care of children in their terminal phase of life.

Los cuidados paliativos: un modelo de atención integral al niño gravemente enfermo y a su familia

The present article reviews aspects unique to pediatric palliative care: the attitudes of medical staff toward pediatric death and life-threatening conditions, distinct patterns of pediatric deaths, the causes of suffering in children with life-threatening conditions and their families, and the features that make palliative care a challenge for children, families, medical staff and society. Concepts of pediatric palliative care and various approaches are described. In addition, Universal Principles of Pediatric Palliative Care are presented. Special attention is paid to approaches that start palliative care at diagnosis of a life-threatening conditions, do not require a short-term life prognosis and do not exclude curative or life-prolonging therapies since these approaches can benefit both children who survive life-threatening conditions and those who die, as well as their families. The need for certain changes through education and research is proposed to improve the quality of life of children and families who currently suffer, satisfaction and cohesion among medical staff, and healthcare quality.

Facts and fallacies in palliative care

The concept of palliative care is still quite new in Malaysia. Through the experience of delivering palliative care in both the hospital and community settings, the author has realized that there are many false beliefs among the medical and nursing professionals, as well as patients and their caregivers. By exploring and providing factual explanations to these beliefs, the present article high- lights the differences in approach between acute and palliative management and the importance of good communication skills, as well as correcting the myths of patients and their caregivers, with the aim of improving the understanding of palliative care. © 2003 Blackwell Publishing Asia and Wonca

Cardiorespiratory Nurses’ Perceptions of Palliative Care in Nonmalignant Disease: Data for the Development of Clinical Practice

Nurses lack a comprehensive body of scientific knowledge to guide the palliative care of patients with nonmalignant conditions. Current knowledge and practice reveal that nurses in many instances are not well prepared to deal with death and dying. Focus groups were used in an exploratory study to examine the perceptions of palliative care among cardiorespiratory nurses (n = 35). Content analysis was used to reveal themes in the data. Four major themes were found: (1) searching for structure and meaning in the dying experience of patients with chronic disease, (2) lack of a treatment plan and a lack of planning and negotiation, (3) discomfort in dealing with death and dying, and (4) lack of awareness of palliative care philosophies and resources. The information derived from this sample of cardiorespiratory nurses represents a complex interplay between personal, professional, and organizational perspectives on the role of palliative care in cardiorespiratory disease. The results of the study suggest a need for nurses to be equipped on both an intellectual and a practical level about the concept of palliative care in nonmalignant disease.

Highlights of the 4th San Salvatore Meeting on Palliative Care, Lugano and St. Gallen, Switzerland, 23–25 October 2001

Palliative care concepts are becoming more and more relevant in the management of patients with advanced, incurable diseases, and even in the management of disease-related symptoms in potentially curable patients. The main aim of palliative care is to improve or at least to maintain the quality of life for both patient and family. In this context our meeting tried to focus on the real needs of patients by offering an overview of practical situations and problems in patients' own homes (bus round of home visits) and on theoretical knowledge (seminars and updating sessions with specialists in this field). The opportunity to analyze and to discuss each particular clinical case according to current knowledge and evidence in a small and competent group was of major interest and perceived as didactically efficacious.

The Introduction of Palliative Care in Uganda

Hospice Uganda was established in Kampala, September 27, 1993. Since then the hospice has served over 3,000 patients with cancer, and referrals of patients with HIV/AIDS are increasing steadily. The concepts of hospice and palliative care are well accepted in Uganda, but the delivery of services has been severely constrained by limited resources. Possibilities for growth, both in service provision and education of health professionals, were improved significantly with the incorporation of palliative care objectives into the Ministry of Health 5-year strategic plan.

The concept of palliative care in The Netherlands.

Palliative care in The Netherlands is growing and the climate for further development is favourable. Although there is a great deal of consensus on the current debates within palliative care, important disagreements persist. These disagreements relate to the history of palliative care within the country, the scope of palliative care, its values, the appropriate institutional context, and the moral acceptability of euthanasia in palliative care. In this paper, the consensus and the disagreements are described and discussed. It is concluded that many disagreements emerge from so-called external goals of palliative care. It is recommended that the debate should refocus on the internal goal of palliative care, which is the quality of life of the patient and his or her loved ones.

The Franciscan program: a Canadian perspective.

255 “PAIN CAN KILL” was the title of an editorial by the late John Liebeskind in the journal, Pain.1 In that article, he mustered evidence on the nocuous effects of pain and stress on the course of cancer.1 Depression also kills2; while among the many symptoms that bedevil the last days of patients, the cachexia-anorexia syndrome stands out as not only the common cause of dependency and loss of quality of life, but as a syndrome which directly shortens the lives of patients.3 The practice of medicine is based on an understanding that the early identification of a problem will lead to either ready alleviation, or possibly even prevention of the disastrous outcomes that may occur if the problem is not promptly addressed. Is it not logical that we should apply the same thinking to end-of-life care, and apply the principles of palliative care as early in the course of a chronic illness as possible? Nevertheless, this simple concept has been ignored within our health care systems; health professionals, patients and families usually think of hospice/palliative care only when disease is far advanced and death is imminent. The Franciscan Health System program, Improving Care Through the End of Life, which is described in this issue of Innovations in End-of-Life Care, can serve as a model to help us overcome current ignorance about the importance of introducing palliative care concepts at the onset of a chronic, predictably fatal illness. My congratulations to Dr. Pattison, Ms. Trandum, their colleagues and the administration of the Franciscan Health System for implementing a most innovative program. It is important for programs of this nature to establish and maintain a comprehensive database that can demonstrate that enrolled patients have a measured improvement in their quality of life, excellent family-professional interaction, and a high degree of satisfaction with professional caregivers. The data generated may convince skeptics that the rhetoric of palliative care can translate into improved care for patients at a reasonable cost. It is also key because we may learn that, as one would expect from a review of symptom biology, impeccable patient care may improve not only the quality of existence, but also the length of life. Concern has been raised that the application of palliative care in acute care settings may dilute palliative/hospice care, as professionals would be caught up in the urgent activities of the acute care setting, functioning simply as “symptomatologists,” i.e., technicians who cobble together a pharmacological answer to a symptom, but fail to recognize or address the psychosocial components of illness. Thus, they may fail to provide a “warm envelope of care” for patients and families, an approach characteristic of good hospice care. I presume that our colleagues at the Franciscan Health System are answering this concern through ensuring that excellent support services are married with equally excellent treatment of the biological abnormalities created by the disease and its associated symptoms. I am asked to comment from a Canadian perspective on the Franciscan Health System program. I wish I could say that we “got there first,” but I am not aware of a similar Canadian program that identifies patients dying from a variety of chronic illnesses and provides them with a truly “best supportive care” comprehensive program. In the absence of carrying out a survey, I cannot state this as a certain fact; perhaps Canadian readers will be challenged to correct my impression. In our own setting, we are mounting a pilot program whereby patients with inoperable cancer of the pancreas (a disorder with a median

Cultural Issues and Ethical Dilemmas in Palliative and End-of-Life Care in Spain

The concept of palliative care differs according to cultures and traditions. In Spain, palliative care programs have expanded in recent years. The European Commission Research Project in Palliative Care Ethics has sponsored ongoing research to analyze and clarify the conceptual differences in providing palliative care to patients in European countries with diverse cultures and backgrounds. The authors present key ethical issues in clinical practice in palliative and end-of-life care in Spain and how these issues are influenced by Spanish culture. They discuss typical characteristics of the Spanish conceptual approach to palliative care, which might be relevant in an even larger Latin palliative care context. The cultural tradition in Spain influences attitudes toward euthanasia, sedation, the definition of terminality, care in the last 48 hours of life, diagnosis disclosure, and information. The overall care of terminally ill patients with an Hispanic background includes not only the treatment of disease, but also the recognition and respect of their traditions and culture. The Spanish palliative care movement has shifted its focus from starting new programs to consolidating and expanding the training of the professionals already working in the existing programs. Although there is a general consensus that a new philosophy of care is needed, the interpretation and application of this general philosophy are different in diverse sociocultural contexts.

Clinical trials in palliative care: an ethical evaluation

On first sight, clinical trials do not seem to fit well within the concept of palliative care. In palliative care, the needs and wishes of the patient set the norm while participation in experimental trials is potentially harmful for the patient. The dilemma seems hard to solve as optimal care for the dying and improvement of treatment for future patients are both imperative. Yet, the one seems to exclude the other. However, on closer examination it becomes less evident that clinical trials in palliative care confront us with an unsolvable dilemma. Some patients’ lives may gain meaning through participation in trials out of solidarity with future patients. In order to clarify this, the notions of authenticity and hope can be illuminative.

Caring for caregivers: experiences and evaluation of interventions for a palliative care team

Palliative care is a fairly recent development in The Netherlands. The first palliative unit in a hospital setting was the Palliative Care Unit (PCU) in the Dr Daniel den Hoed Clinic, a specialized oncology hospital, now part of the Academic Hospital Rotterdam (AZR-Daniel). This PCU was designed to function as an academic laboratory, where palliative care concepts are being developed, put into practice, and evaluated. It’s mission was to put the patient first in mind, heart and soul. Right from the start, special attention was paid to the implementation a system of ‘care for caregivers’ in order to support the staff of the PCU in caring for the terminally ill and to prevent burnout. A process evaluation has been carried out with a special focus on the effects of the implementation of the new unit on the wellbeing of the interdisciplinary team of caregivers during the first year of its existence and on the experiences with a residential training preceding the start of patient care activities and the weekly staff support meetings. In the second half of the first year, the PCU staff experienced increased levels of job-related stress. Most stress was attributed to organizational factors, related to management issues but also to lack of institutional support. Teamwork also contributed to stress within the interdisciplinary team. Direct patient care activities also had some impact on experienced stress levels, through a heavy work-load of complex care, a shortage of staff and an experienced lack of competence. While the staff support activities were designed to give emotional support and deal with death and bereavement, these issues did not arise as major problems. As a consequence, the staff support in the PCU was perhaps less successful than it could have been. However, the high stress levels of this innovative palliative team warrant attention. We discuss how support meetings could be a more effective way of caring for staff. They should be accompanied by adequate resources, a supportive management structure, and an extensive educational program.

Improving HIV/AIDS services through palliative care: an HRSA perspective. Health Resources and Services Administration.

There has been a dramatic shift of the human immunodeficiency virus/ acquired immunodeficiency syndrome (HIV/AIDS) epidemic into poor, marginalized, and minority communities in the US. At the same time, the availability of new highly active antiretroviral treatments has made it possible for a large number of individuals to live for a much longer time with their disease. A net result is that the US is faced with an increasing number of people who are living with HIV/AIDS and are dependent on publicly supported health care services. In this paper, we review the palliative care efforts of the federal agency, the Health Resources and Services Administration (HRSA), responsible for providing Ryan White CARE Act HIV/AIDS care to medically underserved populations. In addition to supporting traditional hospice care, HRSA's HIV/AIDS Bureau has begun a series of initiatives that apply a broader concept of palliative care to its HIV programs in hospital- and community-based settings. Our interest is not to substitute palliation for access to new HIV therapies, such as highly active antiretroviral treatments, but to ensure that our health delivery systems attend to the alleviation of symptoms and suffering along with the provision of antiretroviral and other necessary treatments. HRSA's HIV/AIDS Bureau is organizing a broader provision of palliative care for its clients and actively contributing to improving care for the disenfranchised internationally.

Analysis of Palliative Care Content in Nursing Textbooks

Overall, this study demonstrates significant deficiencies in end-of-life care content in nursing textbooks. Defining palliative care, quality of life at the end of life, and issues of policy, ethics, and law are the foundation of end-of-life care. Analysis of these topics revealed a need to clarify concepts and to apply them within the context of end-of-life care. The analysis also demonstrated a need to transfer findings from palliative care research and concepts from hospice into basic education. In March 1999 the investigators convened a conference in New York in collaboration with a group of medical investigators analyzing EOL content in medical textbooks. The conference was also attended by publishers, editors, and authors of textbooks. The investigators were very encouraged by their interest in and commitment to correcting any weaknesses in their books. The investigators provided them with specific recommendations for improvement and resources for locating both appropriate content and authors with palliative care expertise. These resources are also made available on the City of Hope Pain Resource Center Web site (http:@mayday.coh.org). Achieving the overall project goal of strengthened nursing education in end-of-life care will be reached through a variety of measures. Improving textbooks is but one important step. The various disciplines involved in palliative care can contribute to this project by working in collaboration with textbook publishers.

Palliative care in a small medical clinic in Zurich, Switzerland.

The first palliative unit in the region of Zurich was opened at the Bircher Klinik Susenberg in 1994. The 40-bed clinic specialises in internal medicine, geriatrics and rehabilitation and has given special importance to the holistic care of the patients since its foundation in 1939. In addition to symptom control and terminal care, rehabilitation was integrated into the concept of palliative care at an early stage. Most of the patients are referred from hospitals in or around Zurich, approximately 20% by the family physician. The mean age of palliative patients is around 69 years, and they stay an average of 27 days in the clinic. Close to 40% of them can return home, and the same percentage die during their stay in hospital; the rest are referred to homes for the elderly or nursing homes or to a central hospital.