Kennedy terminal ulcers, a subset of pressure injuries, are associated with the dying process. This scoping review aimed to identify and map the published literature on Kennedy terminal ulcers in terms of its definition, prevalence, assessment, treatment, management, health care costs, and quality of life for patients in all health care settings. Using the Arksey and O’Malley scoping review framework, we systematically searched the Cochrane Library, CINAHL, EMBASE, MEDLINE, and ProQuest databases and 5 guideline repositories between 1983 and 2018. The following search terms were used: Kennedy ulcers, Kennedy terminal ulcers, terminal ulcer, skin failure, and Skin Changes at Life’s End. Data were extracted using a purposely developed data collection tool. Initial searches yielded 2997 sources, with 32 included in this review. Most Kennedy terminal ulcer literature was published by nurses in the United States. Kennedy terminal ulcer prevalence data are limited, with no validated assessment tools available. Kennedy terminal ulcers may be misclassified as pressure injuries, potentially resulting in financial penalties to the institution. This scoping review revealed significant knowledge and clinical practice gaps in patient assessment, management, and treatment of Kennedy terminal ulcers. Timely patient education may help them to make informed care and quality end-of-life decisions. Further research is needed to inform clinical practice to improve patient care.
Palliative Care and its medical subspecialty, known as Palliative Medicine, is the care of anyone with a serious illness. This emerging field includes Hospice and comfort care, however, it is not limited to end-of-life care. Examples of the types of serious illness that Palliative Medicine clinicians care for include and are not limited to hematologic and oncologic diseases, such as cancer, advanced heart and lung diseases (e.g., congestive heart failure and chronic obstructive pulmonary disorder), advanced liver and kidney diseases, and advanced neurologic illnesses (e.g., Alzheimer's and Parkinson's disease). In the past decade, there has been tremendous growth of Palliative Medicine programs across the country. As the population of patients with serious illnesses increases, there is growing concentration on quality of care, including symptom management, meeting patients' goals regarding their medical care and providing various types of support, all of which are provided by Palliative Medicine. In this review article we define Palliative Medicine, describe care pathways and their applicability to Palliative Medicine, identify different models for Palliative Care and provide evidence for its impact on cost and quality of care.
Cet article est une mise au point sur la mort inattendue du nourrisson, qui malgré une forte baisse, reste la 1ère cause de décès au-delà de la période néonatale, justifiant de renforcer les mesures de prévention et d'en comprendre la cause. (Adapté du R.A.).
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BACKGROUND: Episodic dyspnea is an increasingly recognized phenomenon that occurs frequently in patients with cancer. Although numerous definitions have been proposed to describe episodic dyspnea, to date, no common widely accepted definition in Spanish has yet emerged. Without a clear well-accepted definition, it is difficult to design rigorous clinical trials to evaluate candidate treatments for this emerging entity and to compare outcomes among studies.
OBJECTIVE: The aim of the study was to reach a consensus definition of episodic dyspnea in the Spanish language based on professional criteria in cancer patients.
DESIGN: A two-round Delphi study.
SETTING/SUBJECTS: Sixty-one Spanish specialists in medical oncology, radiation oncology, pneumology, palliative care, and pain management participated in the study.
MEASUREMENTS: Sixteen different questions on dyspnea-related terminology, including the definition of episodic dyspnea, were assessed.
RESULTS: The panel of experts reached a consensus on 75% of the 16 assessments proposed: 56.25% in agreement and 18.75% in disagreement. The term that most panelists considered most appropriate to define dyspnea exacerbation was dyspnea crisis. The panelists disagreed that dyspnea exacerbation is equivalent to dyspnea at effort and that the presence of dyspnea at rest is required for exacerbation to occur. However, there was wide agreement that exacerbation may or may not be predictable and can be triggered by comorbidities as well as emotional, environmental, or effort factors.
CONCLUSIONS: The broad consensus reached in this study is a necessary first step to design high-quality methodological studies to better understand episodic dyspnea and improve treatment.
Psychiatry today is mainly practised within a curative framework. However, many mental disorders are persistent and negatively affect quality of life as well as life expectancy. This tension between treatment goals and the actual illness trajectory has evoked a growing academic interest in 'palliative psychiatry', namely the application of a palliative care approach in patients with severe persistent mental illness. Recently, Trachsel et al presented a working definition of palliative psychiatry. This first official attempt to capture the concept is based on WHO's widely accepted definition of palliative care but modified and limited to include only severe persistent psychiatric illness. While this is a welcome step in the discussion on palliative care approaches in psychiatry, it also opens up for new questions. One of the most evident is whether psychiatry actually needs its own definition of palliative care or, put differently, whether there is something about mental disorders that differs so radically from other medical conditions that it calls for a separate definition. We acknowledge the need to discuss the goals of psychiatric care in patients with severe persistent psychiatric illness. However, we question whether a separate definition of palliative care exclusive to psychiatry is the right way to go. In this paper, we discuss why.
Les infirmiers répondent aux exigences universitaires et sont amenés à justifier des pratiques professionnelles pertinentes. Les soignants (cadres, étudiants, aides, auxiliaires…) sont tous concernés par l’ensemble des définitions en relation d’aide pour argumenter l’impact du "Prendre soin”. Les pratiques infirmières ne cessent d’évoluer. Il convient également de prendre en compte sa dimension humaine pour analyser des savoirs en action, pour accompagner les personnes soignées vers une relation soignant-soigné, de nature interdisciplinaire.
Cette quatrième édition est enrichie par des concepts inhérents à la profession infirmière (Médiation en santé, infirmières de nuit, savoirs informels, Sédation en fin de vie...). L’approche de cet ouvrage demeure centrée sur la personne. Sa vocation humaniste repose, entre autres, sur les théories de Carl Rogers (Empathie, écoute active, non jugement…) et propose une vision relative aux sciences humaines (éducation, psychologie, sociologie…) . Des spécialistes ont contribué à définir plusieurs entrées (Anne Muller, Anne Perraut-Solivères, Michel Nadot, Christophe Debout, Régis Aubry, Robert Masson...). Ce recueil de concepts professionnels est utile dès le premier semestre de la formation initiale, de l’analyse de pratiques jusqu’au mémoire de fin d’études.
Outil aidant, ce dictionnaire sera tout aussi utile au personnel soignant qui pourra y puiser du sens, participer à des projets de recherche...
Human dignity (HD) in patient care is an important concept in clinical ethics that has various definitions in existing literature. This study aimed at analyzing the concept of HD in patient care. To this end, Rodgers' evolutionary concept analysis was used. For this purpose, scientific databases PubMed, Elsevier, ScienceDirect, Scopus, OVID, Web of Science, CINHAL, IRANDOC, Google Scholar, Magiran, SID and IranMedex were searched fusing the words "human dignity", "patient care" and "ethics". The main criterion for inclusion in the final analysis was the literature published in English and Persian from 2006 to 2016 in online scientific journals within the context of health care disciplines. Ultimately, 21 articles were selected for the study. The attributes of the concept under study were identified in two areas of individual HD and social HD. Antecedents included facilitators and threats, and the consequences consisted of both favorable and unfavorable consequences. HD forms the essence of patient care and is a value-based and humanistic concept based on respect for the integrity of human beings and their beliefs. This concept, with its holistic approach to humans, takes into account all stages of disease, old age and the end of life period. HD in patient care is influenced by cultural, social, spiritual and religious factors, and with its justice-based approach emphasizes equality of all patients and extends patient care to all areas of society rather than restricting it to hospital settings. In this study, a clear definition of HD is introduced.
The author focus on what went into the Danish stillbirth rate not only according to definitions but also seen in a broader context of cultural practices around birth and registration conventions.
Although grief is a natural response to loss among human beings, some people have a severe and prolonged course of grief. In the 1990s, unusual grief persisting with a high level of acute symptoms became known as "complicated grief (CG)". Many studies have shown that people who suffer from CG are at risk of long-term mental and physical health impairments and suicidal behaviours; it is considered a pathological state, which requires clinical intervention and treatment. DSM-5 (2013 Diagnostic and statistical manual of mental disorders, 5th edn) proposed "persistent complex bereavement disorder" as a psychiatric disorder; it is similar to CG in that it is a trauma- and stress-related disorder. In recent years, there has been considerable research on the treatment of CG. Randomized controlled trials have suggested the efficacy of cognitive behavioural therapy including an exposure component that is targeted for CG. However, experts disagree about the terminology and diagnostic criteria for CG. The ICD-11 (International classification of diseases, 11th revision) beta draft proposed prolonged grief disorder as a condition that differs from persistent complex bereavement disorder with respect to terminology and the duration of symptoms. This divergence has arisen from insufficient evidence for a set of core symptoms and the biological basis of CG. Future studies including biological studies are needed to reach consensus about the diagnostic criteria for CG.This article is part of the theme issue "Evolutionary thanatology: impacts of the dead on the living in humans and other animals".
BACKGROUND: The term "palliative approach" has emerged to connote healthcare activities provided consistent with the philosophy of palliative care, but not limited to specialized care providers or settings. A rigorous understanding of the palliative approach requires a conceptual model, which links the philosophy of palliative care to specific actions of practitioners, and is applicable to patients with any life-threatening illness, at any point on the disease trajectory, and provided by any care provider in any setting. This article proposes a conceptual model asserting that a palliative approach exists when care simultaneously addresses whole-person needs, enhances quality of life, and acknowledges mortality.
OBJECTIVE: To test the content validity of the proposed model against definitions of palliative care in existing literature.
DESIGN: Electronic and manual literature searches identified definitions of palliative care and palliative approach. Two authors independently conducted thematic analysis to assess congruence with the domains of the proposed conceptual model.
RESULTS: Nineteen definitions were identified. The three domains were represented in the majority: whole-person care (17/19), quality-of-life focus (17/19), and mortality acknowledgement (15/19). Published definitions also included other concepts, but only one of these (family within the unit of care) appeared in more than a few definitions.
CONCLUSIONS: The content validity of the proposed conceptual model is supported by the consistent presence of the three domains in published definitions. This conceptual model bridges philosophical definitions and clinician behavior and has potential to inform broad implementation of a palliative approach, at both clinic and system levels.
L'auteur présente tout d'abord de quelle manière la spiritualité est définie dans la littérature médicale. Ensuite il propose une manière d'appréhender la question de la définition de la spiritualité qui permette de développer des recherches dans le champ "Spiritualité et santé".
Several bioethicists have recently discussed the complexity of defining human death, and considered in particular how our definition of death affects our understanding of the ethics of vital organ procurement. In this brief paper, we challenge the mainstream medical definition of human death-namely, that death is equivalent to total brain failure-and argue with Nair-Collins and Miller that integrated biological functions can continue even after total brain failure has occurred. We discuss the implications of Nair-Collins and Miller's argument and suggest that it may be necessary to look for alternative biological markers that reliably indicate the death of a human being. We reject the suggestion that we should abandon the dead-donor criteria for organ donation. Rather than weaken the ethical standards for vital organ procurement, it may be necessary to make them more demanding. The aim of this paper is not to justify the dead donor rule. Rather, we aim to explore the perspective of those who agree with critiques of the whole brain and cardiopulmonary definitions of death but yet disagree with the proposal that we should abandon the dead-donor rule. We will consider what those who want to retain the dead-donor rule must argue in light of Nair-Collins and Miller's critique.
Since the latter part of the twentith century, international research, education and practice of advance care planning has experienced a diversity of developments and defintions. Whilst this variety may seem bewildering, a continued commitment to accurate, focussed research enables better care through better understanding and better evidence.
Two recent policy statements by major providers of critical care have rejected the concept and language of "medical futility," on the ground that there is no universal consensus on a definition. They recommend using "potentially inappropriate" or "inappropriate" instead. We argue that their proposed terms are vague-even misleading-in the ICU setting, where serious life-and-death decisions are made. Whatever specific meaning the exclusive world of critical care might wish to give to the word inappropriate, in the lay world the term is so broad it trivializes the activity. We also point out that there is no universal consensus on the definition of death, the right to abortion, or the right to refuse blood products, yet medicine carries on. One advantage of the term "medical futility" is that it confirms unambiguously that human beings are mortal, and medicine's powers are limited. It leads more naturally to integrating palliative and comfort care into critical care decision-making and encourages health providers to think more deeply about their role in the inevitable ending of their patients' lives.
The word futile has been a touchstone in debates regarding resolution of disputes regarding life-prolonging treatments since the 1980s. Here, we respond to several criticisms of the Multiorganization Policy Statement, "An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units" (Bosslet et al. 2015). This response highlights the need for a strict definition of the word futile in order to avoid undue treatment differences when end-of-life interventions are contested. We also reply to several criticisms of this policy statement that are formulated upon fundamental misunderstandings of the statement and its assertions.
Requests for life-prolonging treatments can cause irresolvable conflicts between health-care providers and surrogates. The Multiorganization Policy Statement (Bosslet et al. 2015) with recommendations to prevent and manage these conflicts creates a good opportunity to examine how end-of-life decisions are made in Dutch neonatal intensive care units and how medical futility is defined. The Dutch equivalent of medical futility in the context of NICU care has grown and developed rather independently, within the typical legal, ethical, and cultural framework of Dutch society. Moreover, intractable conflicts and legal claims about life-prolonging treatments of newborns are very rare. This makes the Multiorganization Statement recommendations only partly relevant to Dutch practice. Critics are right in their comments that a substitution for the term futility, as recommended in the statement, is unlikely to prevent or solve irresolvable conflicts. But the recommended transparency about limit setting may work well, provided physicians make sure that comfort and palliative care are always provided.
Fatigue is a subjective, unpleasant, potentially disabling symptom rooted in physiological, psychological, and behavioral causes. People living with human immunodeficiency virus (HIV) are a population highly affected by fatigue because of risk factors associated with HIV infection, treatment, and psychosocial disease burden. People with HIV are living longer and are facing the challenge of a longer disease trajectory. Palliative nurses with expertise in symptom management can play a crucial role in helping people with HIV to engage in health behaviors that prevent or mitigate fatigue. In this article, the authors present a definition and overview of fatigue, describe the problem of fatigue in people living with HIV, and present a case study that illustrates the role of the palliative nurse in helping a person with HIV to cope with fatigue. Key Implications for Palliative Care Nurses:
People living with HIV are at high risk for fatigue because of cardiovascular and metabolic changes that occur as a result of HIV infection and treatment.
Fatigue is a multidimensional symptom that includes physical sensation changes and changes in thought processes and awareness, and it can affect behavioral and social function.
Palliative care nurses with expertise in symptom management can advocate for people living with HIV by facilitating necessary clinical assessments and referrals and can help people with HIV address physiological, psychological, and behavioral factors that cause fatigue through holistic care planning with patients.
PURPOSE: This study investigated the effect of two types of palliative sedation defined using intervention protocols: proportional and deep sedation.
METHODS: We retrospectively analyzed prospectively recorded data of consecutive cancer patients who received the continuous infusion of midazolam in a palliative care unit. Attending physicians chose the sedation protocol based on each patient’s wish, symptom severity, prognosis, and refractoriness of suffering. The primary endpoint was a treatment goal achievement at 4 h: in proportional sedation, the achievement of symptom relief (Support Team Assessment Schedule (STAS) = 1) and absence of agitation (modified Richmond Agitation-Sedation Scale (RASS) = 0) and in deep sedation, the achievement of deep sedation (RASS = - 4). Secondary endpoints included mean scores of STAS and RASS, deep sedation as a result, and adverse events.
Among 398 patients who died during the period, 32 received proportional and 18 received deep sedation. The treatment goal achievement rate was 68.8% (22/32, 95% confidence interval 52.7–84.9) in the proportional sedation group vs. 83.3% (15/18, 66.1–100) in the deep sedation group. STAS decreased from 3.8 to 0.8 with proportional sedation at 4 h vs. 3.7 to 0.3 with deep sedation; RASS decreased from + 1.2 to - 1.7 vs. + 1.4 to - 3.7, respectively. Deep sedation was needed as a result in 31.3% (10/32) of the proportional sedation group. No fatal events that were considered as probably or definitely related to the intervention occurred.
CONCLUSION: The two types of intervention protocol well reflected the treatment intention and expected outcomes. Further, large-scale cohort studies are promising.