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International Review of Neurobiology 2017Parkinson's disease is the second most common neurodegenerative disease worldwide. There is widespread consensus that Parkinson patients, their carers, and clinicians... (Review)
Review
Parkinson's disease is the second most common neurodegenerative disease worldwide. There is widespread consensus that Parkinson patients, their carers, and clinicians involved in their care would benefit from a fully integrated, need-based provision of palliative care. However, the concept of palliative care in Parkinson's disease is still poorly defined and, consequently, poorly implemented into daily clinical practice. A particular challenge is the gradually progressive nature of Parkinson's disease-with insidiously increasing disability-making it challenging to clearly define the onset of palliative care needs for Parkinson patients. As people with Parkinson's disease are now living longer than in the past, future research needs to develop a more robust evidence-based approach to clarify the disease events associated with increased palliative care needs, and to examine these, prospectively, in an integrated palliative care service. The modern palliative care outlook, termed "simultaneous care,",is no longer restricted to the final stage of disease. It involves incorporating a continuity of care, effective management of the chronic-palliative interface, and a multidisciplinary network of professionals working both in the community and in specialized clinics, with active involvement of caregivers. Although promising, there is still a need to demonstrate the effectiveness of palliative care for patients with Parkinson's disease.
Topics: Humans; Palliative Care; Parkinson Disease
PubMed: 28554419
DOI: 10.1016/bs.irn.2017.02.017 -
American Journal of Transplantation :... Dec 2017Palliative care is an interprofessional approach that focuses on quality of life of patients who are facing life-threatening illness. Palliative care is consistently... (Review)
Review
Palliative care is an interprofessional approach that focuses on quality of life of patients who are facing life-threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower healthcare utilization. Most transplant patients have advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well-suited to support these patients and their caregivers, yet access to palliative care and research within this population are lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure and transplant populations. A proposed model to provide palliative care in parallel with disease-directed therapy in a transplant program has the potential to improve symptom burden, quality of life, and healthcare utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is a tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease.
Topics: Humans; Organ Transplantation; Palliative Care; Quality of Life; Social Support; Terminal Care
PubMed: 28976070
DOI: 10.1111/ajt.14522 -
Postgraduate Medical Journal Jun 2016Palliative care advocates a holistic, multiprofessional approach to the care of people with life-threatening disease. In addition to the control of physical symptoms... (Review)
Review
Palliative care advocates a holistic, multiprofessional approach to the care of people with life-threatening disease. In addition to the control of physical symptoms attention should also be paid to psychosocial, cultural and spiritual aspects of the patient's experience of illness. Guidance documents and research evidence reflect the complexity of the patient's journey and the need to regularly assess these areas of need over time. Cultural background can shape how patients respond to life-threatening illness, as can the beliefs held by the patients, whether religious or more broadly spiritual. Research evidence shows the importance of identifying and addressing cultural and spiritual aspects of care held by patients, families and staff. These are often neglected in clinical practice due to the focus on biomedical concerns and staff discomfort in engaging with beliefs and culture. Recent studies have highlighted gaps in the research, and some methodological difficulties and indicate many patients welcome healthcare staff enquiring about the importance of their beliefs and culture. Identifying research priorities is necessary to guide future research and strengthen the evidence base.
Topics: Critical Illness; Culturally Competent Care; Culture; Humans; Needs Assessment; Palliative Care; Patient Care Team; Spirituality
PubMed: 26933233
DOI: 10.1136/postgradmedj-2015-133369 -
Neurology Aug 2014Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical... (Review)
Review
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research.
Topics: Humans; Nervous System Diseases; Neurology; Palliative Care; Physician's Role
PubMed: 24991027
DOI: 10.1212/WNL.0000000000000674 -
Maturitas Jan 2016Interest in palliative care for people with dementia has been around for over two decades. There are clinical and ethical challenges and practical problems around the... (Review)
Review
Interest in palliative care for people with dementia has been around for over two decades. There are clinical and ethical challenges and practical problems around the implementation of good quality palliative care in dementia. This narrative review of the literature focuses on the rationale or basis for services, some of the ethical issues that arise (particularly to do with artificial nutrition and hydration) and on the provision and implementation of services. We focus on the most recent literature. The rationale for palliative care for people with dementia is based on research and on an identified need for better clinical care. But the research largely demonstrates a paucity of good quality evidence, albeit particular interventions (and non-interventions) can be justified in certain circumstances. Numerous specific clinical challenges in end-of-life care for people with dementia are ethical in nature. We focus on literature around artificial nutrition and hydration and conclude that good communication, attention to the evidence and keeping the well-being of the person with dementia firmly in mind will guide ethical decision-making. Numerous challenges surround the provision of palliative care for people with dementia. Palliative care in dementia has been given definition, but can still be contested. Different professionals provide services in different locations. More research and education are required. No single service can provide palliative care for people with dementia.
Topics: Decision Making; Dementia; Fluid Therapy; Humans; Nutritional Support; Palliative Care
PubMed: 26421475
DOI: 10.1016/j.maturitas.2015.09.003 -
Theoretical Medicine and Bioethics Jun 2018Developing the ethics of palliative sedation, particularly in contrast to terminal sedation, requires consideration of the relation between body and soul and of the...
Developing the ethics of palliative sedation, particularly in contrast to terminal sedation, requires consideration of the relation between body and soul and of the nature of death and dying. Christianly considered, it also requires attention to the human vocation to immortality and hence to the relation between medicine (as aid for the body) and discipline (as aid to the soul). Leaning on Augustine's rendering of the latter, this paper provides a larger anthropological and soteriological frame of reference for the ethics of palliative sedation, organized by way of nine briefly expounded theses. It argues that palliative sedation, like other elements of medicine, is appropriate where, and only where, it properly orders care for the body to the requirements of care for the soul.
Topics: Attitude to Death; Christianity; Deep Sedation; Humans; Palliative Care
PubMed: 30097763
DOI: 10.1007/s11017-018-9437-0 -
BMJ Supportive & Palliative Care Sep 2018Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within... (Review)
Review
OBJECTIVES
Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within palliative care, however, there has been a long-standing interest in how poetry may help patients and health professionals find meaning, solace and enjoyment. The objective of this paper is to identify the different ways in which poetry has been used in palliative care and reflect on their further potential for education, practice and research.
METHODS
A narrative review approach was used, drawing on searches of the academic literature through Medline and on professional, policy and poetry websites to identify themes for using poetry in palliative care.
RESULTS
I identified four themes for using poetry in palliative care. These concerned (1) leadership, (2) developing organisational culture, (3) the training of health professionals and (4) the support of people with serious illness or nearing the end of life. The academic literature was mostly made up of practitioner perspectives, case examples or conceptual pieces on poetry therapy. Patients' accounts were rare but suggested poetry can help some people express powerful thoughts and emotions, create something new and feel part of a community.
CONCLUSION
Poetry is one way in which many people, including patients and palliative care professionals, may seek meaning from and make sense of serious illnesses and losses towards the end of life. It may have untapped potential for developing person-centred organisations, training health professionals, supporting patients and for promoting public engagement in palliative care.
Topics: Bereavement; Health Personnel; Humans; Palliative Care; Poetry as Topic; Terminal Care; Terminally Ill
PubMed: 29574424
DOI: 10.1136/bmjspcare-2017-001477 -
Critical Care Nursing Clinics of North... Sep 2015The chronicity of illness that afflicts children in Pediatric Palliative Care and the medical technology that has improved their lifespan and quality of life make... (Review)
Review
The chronicity of illness that afflicts children in Pediatric Palliative Care and the medical technology that has improved their lifespan and quality of life make prognostication extremely difficult. The uncertainty of prognostication and the available medical technologies make both the neonatal intensive care unit and the pediatric intensive care unit locations where many children will receive Pediatric Palliative Care. Health care providers in the neonatal intensive care unit and pediatric intensive care unit should integrate fundamental Pediatric Palliative Care principles into their everyday practice.
Topics: Child; Critical Illness; Hospice and Palliative Care Nursing; Humans; Intensive Care Units; Palliative Care; Pediatrics
PubMed: 26333755
DOI: 10.1016/j.cnc.2015.05.005 -
Annals of Palliative Medicine Jan 2018In this article, I do not intend to present the many and well-known treatments for relieving pain and distress symptoms of the physical body, damaged by terminal... (Review)
Review
In this article, I do not intend to present the many and well-known treatments for relieving pain and distress symptoms of the physical body, damaged by terminal diseases, such as cancer, AIDS, multiple sclerosis. In this article, I'd rather focus my attention on clinical hypnosis for subjects who, freed from physical pain, thanks to palliative care, are open to receiving comfort and support for their psychological and spiritual suffering. The intent of this article is to express how clinical hypnosis can harmoniously integrate psychological and spiritual aspects so that the terminal patient can make peace with his/her past, with the people who have hurt him/her, and with the people who will suffer because of his/her death. This article will present some hypnotic suggestions inspired by universal wisdom of the Stoics, by positive psychology of Mindfulness, by laws of nature regarding changes, differences and mysteries. The basic assumption of the suggestions presented is that, if disease is an enemy to fight, death is an inevitable part of life: it cannot be avoided, or postponed or exchanged with anybody. It arrives when we have finished living. When death is preceded by an incurable disease, palliative care can offer a mantle of compassion and acceptance of what cannot be avoided. The words palliative comes from the Latin pallium-mantle. This article also presents some suggestions I have utilized several times with my patients. These suggestions have demonstrated their efficacy in alleviating patients' suffering in coping with their disease and in facing death.
Topics: Emotional Adjustment; Humans; Hypnosis; Mindfulness; Palliative Care; Quality of Life; Spiritual Therapies; Spirituality; Terminally Ill
PubMed: 29156894
DOI: 10.21037/apm.2017.07.07 -
Primary Care Sep 2019Primary care physicians are at the frontlines, often the first point of contact for many people with the medical system. They have to manage chronically ill patients... (Review)
Review
Primary care physicians are at the frontlines, often the first point of contact for many people with the medical system. They have to manage chronically ill patients with life-limiting diagnoses who also have ongoing psychosocial needs. This article discusses why cultural, spiritual, and religious interplay with medical decision making is important and provide some strategies for addressing these aspects of care.
Topics: Cultural Characteristics; Humans; Palliative Care; Primary Health Care; Quality of Life; Religion; Spirituality
PubMed: 31375189
DOI: 10.1016/j.pop.2019.05.006