Objective: Communication between patients and end-of-life care providers requires sensitivity given the context and complexity involved. This systematic review uses a narrative approach to synthesise clinicians’ understandings of communication in end-of-life care.
Methods: A systematic, narrative synthesis approach was adopted given the heterogeneity across the 83 included studies. The review was registered prospectively on PROSPERO (ID: CRD42019125155]. Medline was searched for all articles catalogued with the MeSH terms “palliative care,” “terminal care” or “end-of-life care,” and “communication”. Articles were assessed for quality using a modified JQI-QARI tool.
Results: The findings highlight the centrality and complexity of communication in end-of-life care. The challenges identified by clinicians in relation to such communication include the development of skills necessary, complexity of interpersonal interactions, and ways in which organisational factors impact upon communication. Clinicians are also aware of the need to develop strategies for interdisciplinary teams to improve communication.
Conclusion: Training needs for effective communication in end-of-life contexts are not currently being met.
Practice Implications: Clinicians need more training to address the lack of skills to overcome interactional difficulties. Attention is also needed to address issues in the organisational contexts in which such communication occurs.
Background: Advance directives have been established as a legal document that ensures patients' wishes are followed if/when they cannot make medical decisions for themselves. The concept, advance directive, is rooted in the ethical principle of patient's autonomy. New York State recognizes three types of advance directives: New York State Health Care Proxy, Living Wills, and Do Not Resuscitate (DNR) order. A common misnomer in healthcare is the idea that advance directives are for the elderly or patients with terminal illness. As per New York State statutes, everyone older than 18-years-old should have an advance directive to avoid conflicts in times of crisis. It has been shown that most patients believe it is their physician's responsibility to initiate an advance directive discussion and residents are at the forefront of most health facilities.
Objective: To assess the knowledge and attitude of internal medicine residents towards advance directive and to improve residents' skills and confidence on advance directive discussion.
Design: We carried out a prospective study to assess the knowledge and attitude of the internal medicine residents towards advance directive to validate the need to implement didactic sessions and simulations. Results: Fifty out of the 75 internal medicine residents of Harlem Hospital Center participated in the study. Most of the responders indicated that they lacked sufficient knowledge in advance directive discussion and indicated that they were interested in didactic sessions and simulations related to how to help patients with advance directives.
Conclusion: Our study showed that most of the residents lacked sufficient knowledge in advance directives discussions and the importance of its incorporation into residency training education.
BACKGROUND: Palliative and end-of-life care is a core competency for doctors and is increasingly recognised as a key clinical skill for junior doctors. There is a growing international movement to embed palliative care education in medical student and junior doctor education. To date there has been no review of the literature concerning the views and experiences of junior doctors delivering this care.
AIM: To review the published literature between 2000 and 2019 concerning junior doctors' experience of palliative and end-of-life care.
METHODS: Systematic literature review and narrative synthesis.
RESULTS: A search of six databases identified 7191 titles; 34 papers met the inclusion criteria, with a further 5 identified from reference searching. Data were extracted into a review-specific extraction sheet and a narrative synthesis undertaken. Three key themes were identified: (1) 'Significance of death and dying': all papers found that junior doctors care for many patients approaching the end of life, and this often causes emotional distress and can leave persisting memories for many years afterwards; (2) 'Thrown in at the deep end': junior doctors feel unprepared and unsupported in providing palliative and end-of-life care; and (3) 'Addressing the gaps': junior doctors often experience a medical culture of disengagement towards dying patients and varying attitudes of senior doctors. Subsequently they have to learn the skills needed through seeking their own opportunities.
CONCLUSION: Medical education needs to change in order to better prepare and support junior doctors for their role in caring for dying patients. This education needs to focus on their knowledge, skills and attitudes.
A majority of nurses struggled with a negative emotion of anger, doubt, fear, or anxious, uncomfortable in the face of death and dying. However, little was known about community health care providers’ in China. Therefore, we conducted a study to investigate their knowledge and attitudes toward end-of-life care and analyze its influencing factors. To provide reference for developing effective strategies to promote end-of-life care in China.
total of 132 community health care providers of 10 community health care centers in Changzhi city were investigated by a Questionnaire of Knowledge and Attitudes toward Caring for the Dying from May, 2017 to December, 2017, and data was analyzed by SPSS 22.0 software.
Of the 132 community health care providers who were under investigation, 70 knew about hospice care, but they rated their overall content on end-of-life care as inadequacy, especially in communication skills and knowledge of pain management. The average score of attitudes was 3.47 (SD = 0.44), the lowest score was in the subscale of nurse-patient communication, which was 2.91 (SD = 0.65). Health care providers who had worked for more than 11 years, who had experiences of the death of relatives or friends, and who had previous experiences of caring for terminal patients had more positive attitudes toward caring for the dying (P < .05 for all). There was a significant relationship between community health care providers’ attitudes toward death and their attitudes toward end-of-life care (r = -0.282, P < .01). The significant predictors of attitudes toward end-of-life care were attitudes toward death (ß = -0.342), experiences of the death of relatives (ß=-0.207), experiences of caring for the dying (ß = 0.185), and working experience (ß = 0.171).
Community health care providers had positive attitudes toward end-of-life care, but they lacked systematic and professional knowledge and skills of caring for the terminal patients. Education is the top priority. It is imperative to set up palliative care courses and life-death education courses, establish an indigenous end-of-life care model, and improve policies, systems, and laws to promote end-of-life care.
Primary care providers tackle the full range of health care needsacross the lifespan. In addition to a focus on health promotion anddisease prevention, they are called upon to manage chronic, serious,and/or life-limiting conditions. This is especially true in the patientpopulation over the age of 65 who are likely to have one or morechronic conditions (McCormick, Chai, & Meir, 2012).
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AIM: This study explored the attitudes, experiences, and perceptions of Korean nurses toward advance directives (ADs) before the establishment of new Well-Dying Law.
METHODS: A sequential explanatory mixed method design was applied. We administered a constructed questionnaire on attitudes toward ADs and end-of-life issues and experience related to end-of-life decision-making. A Korean-translated version of the KAESAD [Knowledge-Attitudinal, Experimental Survey on ADs] was administered by 245 nurses. Semi-structured interviews (N = 16) were audio-recorded, transcribed, and coded in a qualitative content analysis.
RESULTS: The quantitative results revealed the nurses' perspectives on ADs: that valuing patient's autonomy, authority, or rights is vital to the implementation of ADs and end-of-life decision-making. Also, nurses reported that patients should be knowledgeable and informed about ADs. These responses allowed us to generate an interview, which revealed four themes in adopting the Well-Dying Law, including ADs. Themes with 'benefits' and 'roles of health care providers' mainly supported the quantitative results. Themes with 'ethical issues,' such as disagreement between patients and family members on ADs, and 'preparation,' regarding adopting the new law, should be importantly considered when implementing ADs in clinical settings.
CONCLUSIONS: Our study highlights that nurses need to develop sufficient knowledge on the laws, and communication skills to help patients be knowledgeable and make their own decisions regarding ADs. To successfully adopt the Well-Dying Law, our findings suggest that a nationwide public campaign and a continuing education program for nurses to manage ethical issues regarding ADs are required.
Palliative care in oncology is an interdisciplinary approach, centered on patients and their families, carried out along the course of neoplastic diseases, based on symptom control, assertive communication and shared decision-making. Although clinical guidelines recommend a holistic intervention, early integration of palliative care into traditional oncological treatment, research shows a great delay in referral of patients, restricting palliative care to end-of-life care. Why does there seem to be a rationing of the early referral, sometimes in violation of human dignity? To a large extent it has to do with lack of knowledge, training and education of health professionals about palliative care and the techniques to deal with the process of death and dying. Several studies have demonstrated the benefit of integrating palliative actions into the routine of active cancer treatments, not only in terms of effective control of physical and psychological symptoms, but also in terms of overall quality of life, patient and family satisfaction, health care costs and survival in some cases. It is necessary to take measures that encourage oncologists to obtain further training in palliative care, as a formal, compulsory internship, integrated in their specific training program. This way, a new generation of physicians will surely change the lives of cancer patients, and their families, integrating - without disproportionate rationing - oncology and palliative medicine.
Palliative care and the relief of suffering have always been at the heart of surgical practice. Many of the most well-known operations, ranging from the Billroth and Whipple procedures to the Halsted radical mastectomy and coronary artery bypass,initially served palliative rather than curative purposes.Despite the long-standingrole that surgery has played in the provision of de facto palliative care, teachings on the principles of palliative and end-of-life care have not traditionally been a part ofthe surgical education curriculum. As a result, surgeons at all levels of training, from medical school to advanced practice, struggle with communicating and implementing palliative care.
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OBJECTIVE: The main concern of caring for an advanced cancer patient is to fulfill the physical, psychological, social, and spiritual needs to reduce the patient's suffering for a dignified death. The purpose of palliative care is to provide comfort and appropriate palliative care nursing. The courage and dedication to fulfill the complex needs for a dying patient become a unique experience for palliative care nurses.
METHOD: Such experience was explored by using a descriptive phenomenological approach. Eight palliative care nurses were involved as the participants. The findings from the interview were analyzed by using Colaizzi method.
RESULTS: The analysis resulted six themes: palliative care given after the primary job in hospital, family's assumption of palliative care nurse as a caregiver, palliative care nurse concerned more on patient's physical needs, palliative care nurse more dominant in collaborating to overcome the pain, providing care for imminent death in accordance with predefined standards, and challenges in decision making regarding to palliative care.
CONCLUSIONS: It is suggested to improve the services to become a palliative care nurse specialist, to improve knowledge and training of palliative care nurse, and to manage the policy of palliative care nurse in National Health Service system.
Background: Educational deficiencies among hospice and palliative medicine (HPM) physicians contribute to suboptimal utilization of palliative radiotherapy (PRT) for patients with advanced cancer.
Objective: to survey HPM fellowship program directors regarding the need for PRT education in HPM fellowship.
Design: We conducted a cross-sectional survey of HPM fellowship program directors in June 2018. We used a 5-point Likert-type scale to assess agreement with statements related to PRT education.
Setting/Subjects: program directors for all United States Accreditation Council for Graduate Medical Education-accredited HPM fellowship programs with at least one enrolled fellow at the time of survey distribution were included.
Results: eighty-one of 120 eligible program directors completed the survey (68% response rate). Nearly all of the respondents agreed that HPM physicians should possess a working knowledge of PRT and that the principles of PRT should be formally taught in HPM fellowship. Thirty percent of HPM fellowship programs, however, lacked a PRT curriculum and only 14% of programs provided more than two hours of PRT education. Limited didactic time, lack of interest among fellows, and lack of collaboration with radiation oncologists were not perceived to be significant barriers to incorporating PRT education into HPM fellowship. More than 75% of program directors indicated that they would consider implementing a PRT curriculum designed specifically for HPM physicians if one were available.
Conclusion: There is a need for PRT education in HPM fellowship. This need may be best addressed by developing a widely accessible PRT curriculum designed to meet the needs of HPM physicians.
BACKGROUND: End-of-life (EOL) care is an important topic in critical care medicine, but EOL discussions with families can be difficult and stressful for intensivists. This study aimed to clarify the current practices and barriers facing pediatric intensive care unit (PICU) EOL care and to identify the requisites for excellent PICU EOL care in Japan.
METHODS: A survey was conducted in 29 facilities across Japan in 2016. The questionnaire consisted of 19 multiple-choice questions and 1 open-ended question.
RESULTS: Twenty-seven facilities responded to the survey. Only 19% had educational programs on EOL care for fellows or residents. Although 21 hospitals (78%) had a multidisciplinary palliative care team, only 8 of these teams were involved in EOL care in PICUs. Mental health care for healthcare providers provided by a psychiatrist was rare (4%). The free comments were categorized as individual, team, environment, legal/ethics, or culture. Commonly raised individual issues included "lack of experience and knowledge about EOL care," "fear of making the decision to end care," and "reluctance to be involved in EOL care because of its complex process." Team issues included "insufficient frequency of conferences" and "non-multidisciplinary approach." Legal and ethics issues were "lack of legal support" and "fear of lawsuits."
CONCLUSIONS: This study is the first to investigate current conditions and barriers in PICU EOL care in Japan. Most of the facilities involved were not satisfied with current practices. The results indicate the need for relevant educational programs as well as the importance of multidisciplinary and legal support.
It is recommended that advance care planning take place across the lifespan. Rural populations have a heightened risk for poor quality and high cost of end-of-life care. A doctoral project was completed to assess rural nurses’ knowledge, attitudes, and experiences with advance directives using the Knowledge, Attitudinal, and Experimental Surveys on Advance Directives. Descriptive statistics were used for analysis. Participants were nurses who practice in rural settings (N = 22). The average age was 46.4 years; all were white (n = 22), and the majority were baccalaureate prepared (n = 12). Practice settings were primarily in home care and hospice. Knowledge scores on advance directives were low (57%). Nurses felt confident in counseling and initiating discussions with patients and families. Less than one-half of the nurses reported they feel part of the advance care planning team. The majority reported advance directive resources and mentorship of younger nurses would be beneficial and indicated the need for additional education, training, knowledge, time, and support to better assist with advance care planning. Project results and recommendations were presented to the participating health care organization. Recommendations included workplace education, support, mentorship, resources, and education on cultural sensitivity using the rural nursing theory.
Introduction: Ventricular-assist devices (VADs) offer end-stage heart failure patients a chance to live longer and better. VAD patient numbers are growing, as is the need for their hospice care, whether they die from cardiac or noncardiac causes. But many hospices do not accept VAD patients because of unfamiliarity with the technology. In 2017, there were no hospice agencies in our area accepting VAD patients.
Case Description: Mr. S was a 61-year-old man with a VAD implanted in 2011. In 2016, he was diagnosed with metastatic colorectal adenocarcinoma, underwent surgical resection, and suffered many postoperative complications. In January 2017, he was hospitalized for a driveline infection and bacteremia. During that stay, Mr. S opted for comfort care with the goal of returning home. The only chance of Mr. S's going home rested on our hospice agency's accepting him. In less than two weeks, our hospice staff partnered with the patient's VAD team to develop the competencies to care for Mr. S. He was stabilized at our inpatient unit and then spent several weeks at home before symptoms required return to inpatient care. When Mr. S became unresponsive, his family chose to inactivate the VAD; Mr. S's death followed quickly and peacefully. Our agency now routinely provides hospice care for VAD patients.
Discussion: It is increasingly important that hospice agencies accept VAD patients seeking hospice care. By drawing on educational resources available from VAD patients' acute-care hospital-based VAD teams, interdisciplinary education of hospice staff can be accomplished quickly and effectively.
PURPOSE: The scope of hospice or palliative care has expanded since its inception, which has significant ramifications for the AH workforce. This study sought to elicit allied health (AH) clinicians' understanding and views about palliative care and its relevance to their clinical practice and to identify their educational needs. Results from analysis of free text survey responses to a single open-ended question from a larger survey are presented.
METHODS: An online survey was distributed to AH clinicians via email lists for the CareSearch Allied Health Hub, Allied Health Professions Australia, and other groups. Descriptive statistics and content analysis of free text responses were used to analyse the data.
RESULTS: A total of 217 AH clinicians responded to an email survey and 187 useable responses were analysed. Four themes were identified: 1) palliative care employs a client-centred model of care, 2) acknowledgement of living whilst dying, 3) interdisciplinary palliative care interventions provide active care in a range of domains, and 4) characteristics of palliative care teams and settings.
CONCLUSION: AH clinicians plan an active role in physical, social, and psycho-spiritual care of palliative care patients and caregivers. Burgeoning numbers of palliative care patients in nonspecialist palliative care settings require AH clinicians to develop skills and competencies to work with people who have advanced disease.
In the past, palliative care has been primarily cancer focused, and more recently the scope of care has broadened to include other life-limiting illnesses. With increasing incidence of multiple comorbidities amongst palliative care patient populations, it is less certain whether access to, and treatment within, palliative care settings are adequate for those who have pre-existing serious and persistent mental illnesses. This paper explores the key concepts of palliative care for people with serious and persistent mental illness (SPMI), the challenges present in nursing practice, and the making of end-of-life decisions, in order to consider how comprehensive, person-centred care might be given. Although some improvements have been reported over the past 14 years, this population appears to remain underserved in palliative care. The need for more specialized education for nurses in both palliative care and mental health care, and better communication and collaboration between the two specialities is needed. Greater collaboration between disciplines may ensure that these patients receive the same standard of care experienced by the general population.
BACKGROUND: While the importance of hospice care education in nursing homes is recognized, the volume of research on the specific educational needs of caregivers in hospice care in nursing homes is still lacking. This study aimed to assess educational needs in hospice care among the nursing home staff in South Korea, and to examine factors related to their education needs.
METHODS: This is a cross-sectional descriptive study. A total of 324 nursing staff members recruited from 15 nursing homes in South Korea participated in this cross-sectional study. Measurements included demographic information, organizational characteristics, education experiences in hospice care, and educational needs in hospice care based on questionnaires developed by Whittaker and colleagues. Data were analyzed using descriptive statistics, t-test, ANOVA, and multiple regression techniques.
RESULTS: In the present study, 70.6% (n = 218) of respondents reported that they had previous experience with education in hospice care and expressed their continued need for further education. The provision of care in the last days of a patient’s life was the most frequent issue identified by nursing home staff for further education. Factors predicting educational needs in hospice care included provision of hospice care services in nursing homes and the existence of hospice care team meetings in the institution. Multiple regression analysis resulted in 14.3% of explained variance in the educational needs of nursing home staff in hospice care.
CONCLUSIONS: Nursing home staff members showed high levels of need for training in hospice care. Therefore, it is imperative for nursing home administrators to initiate and support well-suited hospice care education for multi-level care workers on an ongoing basis.
Physician aid-in-dying (PAD) is now legalized in more than half a dozen states across the United States yet remains controversial among health care providers and the general public. Previous studies have described physicians' and nurses' experiences with and attitudes about PAD; however, there is no data about PAD in the context of genetic counseling. This study explores genetic counselors' experiences, understanding, training, and perspectives about PAD. Fifteen participants were recruited to complete semistructured telephone interviews. Five participants had received patient inquiries about PAD. Most participants (n = 10) did not feel prepared to discuss PAD with patients and felt that they did not have adequate knowledge to answer patient questions about the practice. Participants described how the unique training, skills, and experiences of genetic counselors could be beneficial for discussing PAD with patients, in comparison to other providers. All participants supported training for genetic counselors about PAD, with many suggesting integration with education about palliative care and end-of-life planning. This is the first study to investigate PAD in the context of genetic counseling. Genetic counselors have had patients ask questions about PAD, want education and access to resources about PAD, and believe they can provide important support and guidance to patients considering PAD in some genetic counseling contexts.
As palliative oxygen therapy (POT) is beneficial only to a minority of patients with chronic breathlessness, it is no longer routinely recommended. This multi-national, online survey of respiratory and palliative medicine specialists, with 440 participants, identified that prescription of POT has decreased over the past decade; however a sizeable proportion of doctors, particularly within palliative care, still support and recommend POT. Further education and research regarding the optimal management of chronic breathlessness are required.
Introduction: Les soins palliatifs constituent un nouveau concept dans la pratique des soignants au Bénin. Les objectifs de notre travail étaient d’évaluer la connaissance et de répertorier les pratiques infirmières en matière d’accompagnement des patients en fin de vie.
Matériels et méthodes: Il s’agit d’une étude transversale descriptive qui s’est déroulée du15/08 au 30/09/2014. Elle a concerné tous les infirmiers exerçant dans les services de médecine du centre national hospitalier universitaire Hubert-K.-Maga à Cotonou.
Résultats: Un total de 28 infirmiers a été enquêté. Seulement huit connaissaient la notion de fin de vie (soit 28,6 %), parmi lesquels sept avaient déclaré que les besoins principaux étaient de calmer la douleur (soit 87,5 %). Vingt-et-un infirmiers ont déclaré n’avoir jamais participé à un accompagnement en fin de vie (soit 75 %).
Conclusion: L’accompagnement des patients en fin de vie est méconnu par le personnel infirmier. Les besoins de formation du personnel dans ce domaine s’avèrent donc nécessaires.
Background: Perinatal bereavement is traumatic for many parents. Not only is the experience itself emotionally painful, the impact on their lives is made more difficult if midwives are unable to provide appropriate care to the parents.
Aim of the study: To explore within an Irish context, the psychosocial factors that impact on midwives’ confidence to provide bereavement support to parents who have experienced a perinatal loss.
Design: A mixed methods sequential explanatory design was used to complete this two-phased study from August 2013 to July 2014. Ethical approval was granted from Ethics Committees of three maternity hospitals and a University in Ireland. The recruitment process for the survey occurred in August 2013 and July 2014 for the focus groups.
Methods: A series of univariate and multivariate analysis were used to analyze the quantitative data using IBM Statistical Package for the Social Sciences (SPSS; version 20). The qualitative data were analyzed using qualitative content analysis. Steps were taken to ensure data validity and reliability.
Results: The overall meta-inference of this study is that the majority of the midwives did not have adequate levels of confidence to provide bereavement support to grieving parents. The psychosocial factors that impact on midwives’ confidence were identified as the midwives’ awareness of the needs of bereaved parents, their own inner strength and the organizational support they received at their place of work.
Conclusion: Improving midwives’ bereavement support knowledge and skills is essential for promoting their confidence. Midwives also need adequate emotional and practical support from their organizations.