Final Stage Of Life Research Articles

Family physicians' role in palliative care throughout the care continuum: stakeholder perspectives.

While palliative care is still often viewed as care for the final stage of life provided usually by specialist health care professionals, ideally, a palliative care approach would start at an earlier stage, with an important role being assigned to the family physician (FP). However, the description of what the FP's tasks would be in the integration of a palliative care approach into the care continuum remains vague. To explore the views of FPs, nurses and patients about the tasks of the FP in palliative care for people with a life-limiting illness from diagnosis onwards. We performed 18 interviews with people with cancer, organ failure or dementia and 6 focus groups, 4 with FPs and 2 with community nurses. Analysis was guided by a thematic content analysis procedure to categorize perceived tasks into overarching themes. The tasks attributed to the FP could be categorized into four roles: FP as (i) available medical expert, (ii) communicator, (iii) collaborator and (iv) life-long learner committed to improving their palliative care competencies by training. Some perceived tasks varied depending on the different phases of illness (such as around diagnosis), while others were applicable throughout the whole illness course. Participants mostly had the same perception of the FPs' tasks, but there was disagreement on, for example, the timing of care planning. Our results help to elucidate the tasks and roles required of FPs to make integration of a palliative care approach into the care continuum possible.

Fonoaudiología en los Cuidados Paliativos

<p>Los Cuidados Paliativos (CP), al generar calidad de vida en el paciente con enfermedad terminal y a su familia; no se aplican únicamente cuando un tratamiento curativo no tiene un efecto favorable y/o en la fase final de vida; ya que, la atención física, emocional y espiritual, es importante desde el momento del diagnóstico de una enfermedad potencialmente mortal; durante su progresión y desenlace. Con el objetivo de documentar, describir y caracterizar el quehacer del Fonoaudiólogo, en los CP; se realizó una revisión bibliográfica narrativa, en la cual por medio de bases de datos especializadas, libros, guías de manejo, páginas electrónicas de instituciones y organizaciones reconocidas a nivel nacional e internacional en CP, Fonoaudiología, Dolor cráneo-facial, Cáncer, Enfermedades Crónicas, entre otras. Se logró realizar una contextualización de diferentes conceptos, identificar la situación de los CP en Colombia y elaborar una propuesta de evaluación diagnóstico e intervención en el final de la vida; referente a la comunicación, el dolor cráneo-facial y la disfagia. Se concluyó que existe poca información que determine el rol del Fonoaudiólogo en los CP; a pesar del gran reporte de la importancia de la comunicación, el manejo de dolor cráneo-facial y la repercusión de la disfagia en la calidad de vida del paciente con enfermedad terminal y su familia. Se destaca que las actividades del Fonoaudiólogo en los CP se alinean a los componentes establecidos por la Organización Mundial de la Salud, al buscar un cuidado que garantice “buena vida”, en los últimos días.<strong></strong></p>

Risk Analysis of Depression, Sleep Hygiene Level and Chronic Disease with Insomnia in Elderly

ABSTRACTThe rapid progress of development in Indonesia have an impact on increasing life expectancy thus increasing the number of elderly. Elderly is the final stage of life so often experienced various changes and disturbances, one of which is a sleep disorder or Insomnia. The prevalence of insomnia in the elderly is quite high, more than 60% but the appearance of this disorder is often overlooked. This study was conducted observational case-control study design. Research sites in the Pelayanan Sosial Lanjut Usia Jombang and performed on 40 elderly people. The study population was divided into 2, 20 people population cases and 20 people population control. The variables studied were depression, chronic disease, sleep hygiene and Insomnia. Most of the elderly suffering from Subtreshold Insomnia with Difficulty Initiating Sleep symptoms are severe. Early Morning Awakening is the least symptom experienced by the elderly. Depression (OR = 22,667), chronic disease (OR = 6.926) and sleep hygiene (OR = 11,000) showed a significant association with Insomnia. The conclusion that can be drawn is perpetuating factors (chronic disease) and precipitating (sleep hygiene) plays a role in the emergence of insomnia in the elderly. The advice given is to take action to control chronic diseases and more attention on sleep disorders experienced by the elderly. In addition, the need for action to improve and enhance sleep hygiene.Keywords: depression, sleep hygiene, chronic disease, insomnia, elderly

Risk Analysis of Depression, Sleep Hygiene Level and Chronic Disease with Insomnia in Elderly

The rapid progress of development in Indonesia have an impact on increasing life expectancy thus increasing the number of elderly. Elderly is the final stage of life so often experienced various changes and disturbances, one of which is a sleep disorder or Insomnia. The prevalence of insomnia in the elderly is quite high, more than 60% but the appearance of this disorder is often overlooked. This study was conducted observational case-control study design. Research sites in the Pelayanan Sosial Lanjut Usia Jombang and performed on 40 elderly people. The study population was divided into 2, 20 people population cases and 20 people population control. The variables studied were depression, chronic disease, sleep hygiene and Insomnia. Most of the elderly suffering from Subtreshold Insomnia with Difficulty Initiating Sleep symptoms are severe. Early Morning Awakening is the least symptom experienced by the elderly. Depression (OR = 22,667), chronic disease (OR = 6.926) and sleep hygiene (OR = 11,000) showed a significant association with Insomnia. The conclusion that can be drawn is perpetuating factors (chronic disease) and precipitating (sleep hygiene) plays a role in the emergence of insomnia in the elderly. The advice given is to take action to control chronic diseases and more attention on sleep disorders experienced by the elderly. In addition, the need for action to improve and enhance sleep hygiene.Keywords: depression, sleep hygiene, chronic disease, insomnia, elderly

Knowledge, Attitude and Practice of Nurses Regarding Organ Donation.

Introduction:Treatment team charged to help patients and their family making decision about donate organs in the final stage of life. Hence, their knowledge and attitude is important to plan of increasing the rate of organ donation.Materials and Methods:About 150 nurses recruited in this cross-sectional study randomly. After taking informed consent, questionnaires were filled. The data collection tool was a multipart questionnaire including demographic information, 18 questions about attitude and practice and 15 question about knowledge toward organ donation. Data were analyzed by SPSS software using K-squire, Pearson correlation test, T-test, variance analyze on 95% confidence interval.Results:Most of participants (76%) were 25-44 years old. About 81.3% of them were female (n=122). The attitude average score between males and females was 85.25±35.61 and 70.37±46.53, respectively. The practice average score in females was 34.43±47.71 and between males was 29.63±46.53. The knowledge average scores were 50.60±16.19 and 56.54±17.48 for two groups (p>0.05). The knowledge average scores between different age groups was significant (p<0.05). There was a direct and significant relation between attitude and practice (r= +0.33, p<0.05), attitude and Factors influencing attitude and practice (r= 0.866, p<0.05), but the relation between attitude and knowledge was indirect and significant (r= -0.183, p<0.05).Conclusions:Since the medical team are most important adviser for promote activities related to organ donation, it seems that educational curriculum and facilities should applied to enhance attitude and behavior favorable change of personnel towards this issue.

OA18 Population based end of life care - meeting the challenge of the ageing population.

The key challenge for most developed countries is meeting the needs of our ageing population, in particular, those nearing the end of their lives - population-based end-of-life care. Building on a public health approach to meet needs of an area-wide population, and a practical approach of enabling generalist frontline staff care for all people in a variety of settings using the GSF Quality Improvement Programmes, we describe progress in a few GSF Cross-Boundary Care Foundation Sites taking a population-based view to meet the challenges of the ageing population. Taking a whole-system view, we explore ways to ensure all people receive quality care towards the final stages of life in line with their needs and wishes in a way that is cost-effective, responsive and compassionate. Expanding concepts of palliative/end-of-life care to include care for people with long-term conditions, dementia, and frailty. We describe practical progress in a number of GSF XBC Sites, enabling generalist frontline staff including: Identifying and prioritising people earlier Reducing 'diagnostic apartheid' Enabling more to live well and die well in the place and manner of their choosing Encouraging integrated person-centred care, reducing inappropriate over-Hospitalisation and prevention of over - medicalising. Use of GSF in various settings to enable generalist frontline staff is described, with key outcome measures and evaluations in the UK, and internationally. As the population ages, population-based end of life care will be one of the most significant developments to meet the challenges for a fit-for-purpose health service of the future.

Between Two Worlds: Liminality and Late-Stage Cancer-Directed Therapy.

Disease-directed therapy near death is a growing trend among persons living with late-stage cancer. As a sociocultural phenomenon, cancer-directed therapy (e.g., chemotherapy) when given for very advanced disease is a process that offers questionable benefits and portends further suffering, but also suggests potential for growth and transcendence. Theories and concepts drawn from cultural anthropology, sociology, and existentialism illustrate how contextual factors contribute to the creation of a "liminal space"; the latter part of the cancer trajectory where living and dying can overlap. When applied to clinical practice, this theoretical framework gives the patient, family, and health care provider a way of "unmasking" a period of transition during terminal illness when aggressive disease-directed care continues to be provided. The liminal space may function as an existential plane; a gateway or threshold with inherent potential for psychospiritual development during the final stage of life.

Attitudes and Knowledge of Iranian Nurses about Hospice Care.

Context:Due to expansion of chronic diseases and increase of health care costs, there is a need for planning and delivering hospice care for patients in their final stages of life in Iran. The aim of the present study is to investigate the knowledge and attitudes of nurses about delivering hospice care for End of Life (EOL) patients.Materials and Methods:This cross-sectional study was conducted in 2012 with a sample size of 200 nurses that were selected by convenient (available) sampling. The data collection instrument was a self-administered questionnaire whose validity was approved by experts’ opinions and its reliability was approved by test-retest method.Results:Among all participants of this study, 87% were female. The mean age of nurses was 32.00 ± 6.72. From all respondents 62% stated that they have no knowledge about hospice care and 80% declared that need for hospice care is increasing. Most of the participants felt that, appropriate services are not presented to patients in the final stages of their lives. About 80% believed that hospice care leads to reduction of health care costs, improvement of physical, mental and social health of patients and finally improvement of the quality of health care services. There was a significant relationship between age, employment history and level of education of nurses and their attitude and knowledge about how this service is provided.Conclusion:In view of the increase in chronic illnesses and the costs of caring, the need for provision of hospice care is felt more and more every day. However the awareness level of nurses about these services is low. Therefore the need for including these issues in nursing curriculum and holding scientific courses and seminars in this field is needed.

Sterben in Würde

Abstract To die in dignity is often understood as a personal right to independently determine the time and the way of one’s own death, assuming dignity as a quality of life that wouldn’t exist in serious illness or in the final stage of life. On the contrary and from a traditional point of view dignity belongs to a person’s being that can never get lost and hence has to be respected also at the end of life. For that reason, from a catholic point of view a voluntary euthanasia as a deliberate killing of a person is definitely rejected. However, a so-called ‘aggressive medical treatment’ must be avoided because it doesn’t accept the actual situation of death and only causes a pointless extension of life. Nevertheless, the palliative care is essential to provide people even in their final lifetime with quality of life and to help them with the personal acceptance of death.

Position statement from the Japan Geriatrics Society 2012: End-of-life care for the elderly.

The Japan Geriatrics Society published a revised version of its position statement regarding the end-of-life care for elderly patients, based on the overall consensus by the members of the ethics committee in 2012. This revision is intended to catch up with current changes of views on the end-of-life care for older people over the past decade. There are many suggestive items regarding the matter in this statement, and the authors believe it will be of specific guidance for those who are caring for older people in their final stage of life in the super-aged society. Also, the statement can be useful in many other countries, where aging of the population is not yet an urgent concern, but will be so in the future. We believe that this “position statement” can offer guidance in an ethical respect for those who are or will be engaged in end-of-life care for older people. We also hope that the release of the current statement provides an avenue for broader discussion in a society with an increasing aged population. Geriatr Gerontol Int 2014; 14: 735–739.

Grado de satisfacción e importancia de los cuidados durante la fase final de la vida

AimsTo determine the level of satisfaction of patient families, and the importance given to different care aspects during the final stage of life. Material and methodsA prospective study using a postal questionnaire sent to the families of patients that died in the care of Medical Oncology, Internal Medicine, and Home Care Services. ResultsThe response rate was low (32%), but similar to other related works. The greatest satisfaction was obtained by pain relief (87.5%) and nurse availability (91.4%). However, doctor availability was one of the worst rated aspects despite being considered very important (17.2% dissatisfied group). The lowest percent of satisfaction was obtained in relation to the information provided by the medical staff. ConclusionsAlthough several care aspects were rated satisfactorily, the communication with the patient and their families is an unresolved matter. Promotion of communication will improve satisfaction and, therefore, the quality of care.

Education About Palliative Care in the Intensive Care Unit: Rediscovering Opportunity

Underlying palliative care is a philosophy that aligns patients' health care with what they deem most important. For patients in the final stages of life, this often includes the desire to avoid burdensome and high-intensity care. In the intensive care unit (ICU), where we see the highest acuity of illness, often there are many competing priorities. The principles of palliative care are vital in refocusing our attention on what matters most to the patient and his or her family. Because of the value of these principles, there is increasing interest in finding ways to improve education in palliative care and to integrate palliative care education into the ICU. To achieve this goal, 3 models for incorporating palliative care in the ICU have been proposed: the integrative model (education in primary palliative care skills for ICU clinicians); the consultative model (access to palliative care specialists); and the mixed model that uses both of these approaches simultaneously.1,2 It is increasingly clear that a mixed model, in which the education and deployment of palliative care specialists is combined with the education of all clinicians in basic principles of palliative care, is the optimal approach to address the diverse range of palliative care needs in the ICU.2

Intensive care nurses' experiences of providing end-of-life care after treatment withdrawal: a qualitative study.

To explore the experiences of intensive care nurses who provided end-of-life care to adult patients and their families after a decision had been taken to withdraw treatment. End-of-life care following treatment withdrawal is a common phenomenon in intensive care. Less is known about nurses' experiences of providing care for the dying patient and their family in this context, when compared to specialist palliative care. Descriptive exploratory qualitative study. A purposive sample of 13 intensive care nurses participated in a semistructured face-to-face interview. Transcribed data were analysed using the principles of interpretative phenomenological analysis. The essence of nurses' experiences of providing end-of-life care after the withdrawal of treatment was interpreted as 'doing the best to facilitate a comfortable and dignified death'. Four master themes included the following: caring for the dying patient and their family; providing and encouraging presence; reconnecting the patient and family; and dealing with emotions and ambiguity. Uncertainties were evident on processes and actions involved in treatment withdrawal, how to reconnect patients and their family effectively and how to reduce the technological environment. Providing end-of-life care after a decision has been taken to withdraw treatment was a common aspect of intensive care. It was evident that nurses were doing their utmost to support patients and families at the end of life, despite the multiple challenges they faced. The interpretive findings from this study should assist intensive care unit nurses to better understand and develop their role in providing high-quality end-of-life care after treatment withdrawal. Practice guidelines should be developed to reduce ambiguity and support the delivery of high-quality care for adults as they approach the final stages of life in intensive care units.

Children and adolescents with cancer under palliative care: experience of family members

This study's objective was to investigate the experience of family members of children and adolescents with cancer in terms of palliative care, especially the care provided in the final stage of life. This is a descriptive and exploratory study with qualitative data analysis. A total of 14 family members participated in the study. They were the caregivers of children and adolescents with cancer who died, and were followed up by a teaching hospital in the state of São Paulo. Empirical data were organized around three themes: "The impact of the worsening of the disease on the family's dynamics", "Communicating bad news" and "The experience of the family concerning palliative care". This study is relevant to children and adolescents with cancer in the end-of life care because the complex, dynamics, and comprehensive experiences of families in the care of children and adolescents in this period can contribute to better understanding of the process of providing care in light of the fundamentals of palliative care.

Guía sobre el manejo de desfibriladores automáticos implantables al final de la vida

This article is a joint document of the Spanish Society of Geriatrics and Gerontology, the Spanish Society of Palliative Care and the Section of Geriatric Cardiology of the Spanish Society of Cardiology. Its aim is to address the huge gap that exists in Spain with regard to the management of implantable cardioverter defibrillators (ICDs) in the final stages of life. It is increasingly common to find patients carrying these devices that are in the terminal stage of an advanced disease. This occurs in patients with advanced heart disease and subsequent heart failure refractory to treatment but also in a patient with an ICD who develops cancer disease, organ failure or other neurodegenerative diseases with poor short-term prognosis. The vast majority of these patients are over 65, so the paper focuses particularly on the elderly who are in this situation, but the decision-making process is similar in younger patients with ICDs who are in the final phase of their life.

Dealing with the end of life.

A case can be made for a team approach to the patient in the final stage of life. While medicine is properly focused on curative intent, some patients benefit from interaction aimed at the issues commonly encountered as life ebbs. For the patient’s medical team, the major concern is diagnosis (“What is wrong?”) and treatment (“What can we do to rectify it?”). For the palliative care team, the major concern is the patient’s comfort. Our palliative care team consists of 2 internists, a social worker, a chaplain, a physical therapist, and a psychiatrist. While there is no established protocol for how to approach the end-of-life stage, it is likely that each team member has his or her own idea of the issues that require attention.

Guía sobre el manejo de desfibriladores automáticos implantables al final de la vida

This article is a joint document of the Spanish Society of Geriatrics and Gerontology, the Spanish Society of Palliative Care and the Section of Geriatric Cardiology of the Spanish Society of Cardiology. Its aim is to address the huge gap that exists in Spain with regard to the management of implantable cardioverter defibrillators (ICDs) in the final stages of life. It is increasingly common to find patients carrying these devices that are in the terminal stage of an advanced disease. This occurs in patients with advanced heart disease and subsequent heart failure refractory to treatment but also in a patient with an ICD who develops cancer disease, organ failure or other neurodegenerative diseases with poor short-term prognosis. The vast majority of these patients are over 65, so the paper focuses particularly on the elderly who are in this situation, but the decision-making process is similar in younger patients with ICDs who are in the final phase of their life.

Guidelines on the management of implantable cardioverter defibrillators at the end of life

This article is a joint document of the Spanish Society of Geriatrics and Gerontology, the Spanish Society of Palliative Care and the Section of Geriatric Cardiology of the Spanish Society of Cardiology. Its aim is to address the huge gap that exists in Spain with regard to the management of implantable cardioverter defibrillators (ICDs) in the final stages of life. It is increasingly common to find patients carrying these devices that are in the terminal stage of an advanced disease. This occurs in patients with advanced heart disease and subsequent heart failure refractory to treatment but also in a patient with an ICD who develops cancer disease, organ failure or other neurodegenerative diseases with poor short-term prognosis. The vast majority of these patients are over 65, so the paper focuses particularly on the elderly who are in this situation, but the decision-making process is similar in younger patients with ICDs who are in the final phase of their life.

»Es geht schnell, das Leben«: Altern zwischen »forever punk« und Ich-Integrität

»And time is fleeting«: Ageing between »forever punk« and ego-integrity This contribution compares everyday conceptions of ageing with those in literature and contrasts these with current and recent research findings. Clearly, ageing today is a highly diverse process in which there is also a place for exploration, something that used to be the privilege of youth. In psychotherapy, life-review therapy and therapy for older couples, we make use of Erikson's notion of the attainment of ego-integrity as a final stage of life.

Guía sobre el manejo de desfibriladores automáticos implantables al final de la vida

This article is a joint document of the Spanish Society of Geriatrics and Gerontology, the Spanish Society of Palliative Care and the Section of Geriatric Cardiology of the Spanish Society of Cardiology. Its aim is to address the huge gap that exists in Spain with regard to the management of implantable cardioverter defibrillators (ICDs) in the final stages of life. It is increasingly common to find patients carrying these devices that are in the terminal stage of an advanced disease. This occurs in patients with advanced heart disease and subsequent heart failure refractory to treatment but also in a patient with an ICD who develops cancer disease, organ failure or other neurodegenerative diseases with poor short-term prognosis. The vast majority of these patients are over 65, so the paper focuses particularly on the elderly who are in this situation, but the decision-making process is similar in younger patients with ICDs who are in the final phase of their life.