Palliative care concentrates on preventing and relieving suffering by reducing the severity of disease symptoms. Consistent treatment of pain and distress must therefore be an integral component of every palliative care concept. In this review non-pharmacological and pharmacological measures for pain and distress management in the context of palliative neonatal care are summarised. Furthermore, recommendations are given focusing on two special palliative neonatal care settings: compassionate extubation and withdrawing artificial nutrition and hydration.
BACKGROUND: Speech-language pathologists (SLPs) are often called upon to assess swallowing function for older adults with advanced dementia at high risk of aspiration and make recommendations about whether the patient can safely continue oral nutrition.
OBJECTIVE: To describe the circumstances under which SLPs recommend oral nutritional intake for these patients.
METHODS: A mail survey of a national probability sample of SLPs (n = 731). Speech-language pathologists were asked if there were circumstances in which they would recommend oral feeding for patients with advanced dementia at high risk of aspiration, and if yes, to describe the circumstances under which they do so.
RESULTS: Six themes emerged: (1) when patient preferences are known; (2) for quality of life near end of life; (3) if aspiration risk mitigation strategies are employed; (4) if physician's preference; (5) if aspiration risk is clearly documented and acknowledged; and (6) if SLP is knowledgeable about current evidence of lack of benefit of feeding tubes in advanced dementia or that nothing by mouth status will not necessarily prevent aspiration pneumonia.
CONCLUSIONS: Speech-language pathologists have an important role within the interprofessional team in assessing swallowing in patients with advanced dementia, advising family and hospital staff about risks and benefits of oral feeding, and the safest techniques for doing so, to maximize quality of life for these patients near the end of life. Speech-language pathologists are often faced with balancing concerns about aspiration risk and recommending the more palliative approach of oral feeding for pleasure and comfort, potentially creating moral distress for the SLP.
Ni la personne âgée ni le personnel soignant ne désirent spontanément aborder en institution les questions relatives à la fin de vie. Comment le faire ?
L'Agence nationale de l'évaluation et de la qualité des établissements et services sociaux et médico-sociaux (ANESM) a établi des recommandations concernant la qualité de vie en établissement d'hébergement pour personnes âgées dépendantes (EHPAD). Elle explique que "les échanges avec les résidents autour de la mort, la leur et celle des autres, leur permettent d'exprimer, s'ils en ressentent le besoin, leurs doutes, angoisses et interrogations". Les mots utilisés traduisent bien toute la difficulté de ce sujet. Le moment préconisé pour cette discussion n'est pas précisé. L'ANESM évoque simplement "au cours de son séjour". Quelques pistes sur la façon de mener ces entretiens sont apportées, mais nous sentons tous que ce thème n'est pas plus neutre pour le patient que pour le professionnel.
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BACKGROUND: Gastrointestinal symptoms, including nausea, vomiting, bowel obstruction, ascites, constipation, and anorexia, are common and often refractory in advanced cancer patients. The palliation of gastrointestinal symptoms is important in improving the quality of life of cancer patients, as well as that of their families and caregivers. Currently published clinical guidelines for the management of gastrointestinal symptoms in cancer patients do not comprehensively cover the topics or are not based on a formal process for the development of clinical guidelines.
METHODS: The Japanese Society for Palliative Medicine (JSPM) developed comprehensive clinical guidelines for the management of gastrointestinal symptoms in cancer patients after a formal guideline development process.
RESULTS: This article summarizes the recommendations along with their rationale and a short summary of the development process of the JSPM gastrointestinal symptom management guidelines. We established 31 recommendations, all of which are based on the best available evidence and agreement of expert taskforce members.
DISCUSSION: Future clinical studies and continuous guideline updates are required to improve gastrointestinal symptom management in cancer patients.
BACKGROUND: Published reports of continuous palliative sedation therapy (CPST) suggest heterogeneity in practice. There is a paucity of reports that compare practice with clinical guidelines.
OBJECTIVES: To assess adherence of continuous palliative sedation practices with criteria set forth in local clinical guidelines, and to describe other features including prevalence, medication dosing, duration, multidisciplinary team involvement, and concurrent therapies.
DESIGN: Retrospective chart review. Settings/Subjects: We included cases in which a midazolam infusion was ordered at the end of life. Study sites included four adult hospitals in the Calgary health region, two hospices, and a tertiary palliative care unit.
MEASUREMENTS: Descriptive data, including proportion of deaths involving palliative sedation therapy, number of criteria documented, midazolam dose/duration, concurrent symptom management therapies, and referrals to spiritual care, psychology, or social work.
RESULTS: CPST occurred in 602 out of 14,360 deaths (4.2%). Full adherence to criteria occurred in 7% of cases. The most commonly missed criteria were: a "C2" goals-of-care designation order (comfort care focus in the imminently dying) (84%) and documentation of imminent death in the chart (55%). Concurrent medical therapies included opioids in 98% of cases and intravenous hydration in 85% of cases. Few referrals were made to multidisciplinary care teams.
CONCLUSIONS: We found low adherence to palliative sedation guidelines. This may reflect the perception that some criteria are redundant or clinically unimportant. Future work could include a study of barriers to guideline uptake, and guideline modification to provide direction on concurrent therapies and multidisciplinary team involvement.
BACKGROUND: Palliative care guidelines and quality measures have been developed in many countries to improve the quality of care. The challenge is to implement quality measures nationally to improve quality of care across all settings.
OBJECTIVE: This article describes the development and implementation of National Guidelines for Palliative Care (NGPC) in Singapore.
DESIGN: The NGPC was developed through literature review, multidisciplinary inputs, and modified RAND Delphi method. Quality measures for the guidelines were developed through literature review and multidisciplinary inputs and implemented with an audit of specialist palliative care providers.
RESULTS: The NGPC consisted of 13 guidelines and 64 quality measures. A total of 11 palliative care services (73.3%) participated in the audit from September 2015 to October 2015. National-level and service-level gaps in quality of care were identified and individual providers identified priority areas for improvement.
CONCLUSION: We successfully developed the national palliative care guidelines and quality measures. We implemented voluntary self-assessment among health care institutions in various settings nationally that serve to catalyze quality improvement and cultivate a culture of quality improvement.
Background: Since Belgium legalised euthanasia, the number of performed euthanasia cases for psychological suffering in psychiatric patients has significantly increased, as well as the number of media reports on controversial cases. This has prompted several healthcare organisations and committees to develop policies on the management of these requests.
Method: Five recent initiatives that offer guidance on euthanasia requests by psychiatric patients in Flanders were analysed: the protocol of Ghent University Hospital and advisory texts of the Flemish Federation of Psychiatry, the Brothers of Charity, the Belgian Advisory Committee on Bioethics, and Zorgnet-Icuro. These were examined via critical point-by-point reflection, focusing on all legal due care criteria in order to identify: 1) proposed measures to operationalise the evaluation of the legal criteria; 2) suggestions of additional safeguards going beyond these criteria; and 3) remaining fields of tension.
Results: The initiatives are well in keeping with the legal requirements but are often more stringent. Additional safeguards that are formulated include the need for at least two positive advices from at least two psychiatrists; an a priori evaluation system; and a two-track approach, focusing simultaneously on the assessment of the patient's euthanasia request and on that person's continuing treatment. Although the initiatives are similar in intent, some differences in approach were found, reflecting different ethical stances towards euthanasia and an emphasis on practical clinical assessment versus broad ethical reflection.
Conclusions: All initiatives offer useful guidance for the management of euthanasia requests by psychiatric patients. By providing information on, and proper operationalisations of, the legal due care criteria, these initiatives are important instruments to prevent potential abuses. Apart from the additional safeguards suggested, the importance of a decision-making policy that includes many actors (e.g. the patient's relatives and other care providers) and of good aftercare for the bereaved are rightly stressed. Shortcomings of the initiatives relate to the aftercare of patients whose euthanasia request is rejected, and to uncertainty regarding the way in which attending physicians should manage negative or conflicting advices, or patients' suicide threats in case of refusal. Given the scarcity of data on how thoroughly and uniformly requests are handled in practice, it is unclear to what extent the recommendations made in these guidelines are currently being implemented.
BACKGROUND: The World Health Organisation (WHO) endorses integrated palliative care which has a significant impact on quality of life and satisfaction with care. Effective integration between hospices, palliative care services, hospitals and primary care services are required to support patients with palliative care needs. Studies have indicated that little is known about which aspects are regarded as most important and should be priorities for international implementation. The Integrated Palliative Care in cancer and chronic conditions (InSup-C) project, aimed to investigate integrated practices in Europe and to formulate requirements for effective palliative care integration. It aimed to develop recommendations, and to agree priorities, for integrated palliative care linked to the InSuP-C project.
METHODS: Transparent expert consultation was adopted at the approach used. Data were collected in two phases: 1) international transparent expert consultation using face-to-face roundtable discussions at a one day workshop in Brussels, and 2) via subsequent online cross-sectional survey where items were rated to indicate degree of agreement on their importance and ranked to indicate priority for implementation. Workshop discussions used content analysis to develop a list of 23 recommendations, which formed the survey questionnaire. Survey analysis used descriptive statistics and qualitative content analysis of open responses.
RESULTS: Thirty-six international experts in palliative care and cancer care, including senior clinicians, researchers, leaders of relevant international organisations and funders, were invited to a face-to-face workshop. Data were collected from 33 (19 men, 14 women), 3 declined. They mostly came from European countries (31), USA (1) and Australia (1). Twenty one of them also completed the subsequent online survey (response rate 63%). We generated 23 written statements that were grouped into the organisational constructs: macro (10), meso (6) and micro (7) levels of integration of palliative care. Highest priority recommendations refer to education, leadership and policy-making, medium priority recommendations focused on funding and relationship-building, and lower priority recommendations related to improving systems and infrastructure.
CONCLUSIONS: Our findings suggest that amongst a group of international experts there was overall good agreement on the importance of recommendations for integrated palliative care. Understanding expert's priorities is important and can guide practice, policymaking and future research.
Nous avons cherché à savoir si le dispositif Leonetti-Claeys relatif à la sédation (DLC) relève d’une sédation palliative ou terminale, et comment se sont positionnées les dernières recommandations professionnelles à cet égard. Il s’avère que le DLC ne cherche pas à diminuer, de façon ajustée et proportionnée, la perception de symptômes réfractaires, dans le respect des enjeux relationnels de la fin de vie — ce qui correspondrait à la sédation palliative. Il consiste davantage à maîtriser les modalités du mourir par l’application standardisée d’une procédure de déconnexion psychique et relationnelle, et constitue dès lors un type de sédation terminale. Derrière ce changement de paradigme, on peut craindre une double réduction : celle de la dignité à la maîtrise des conditions du mourir, et celle de la relation de soins à un « droit à ». À l’inverse, les recommandations publiées par la Société française d’accompagnement et de soins palliatifs (SFAP) et la Haute Autorité de santé (HAS) se sont efforcées de replacer le DLC dans une visée palliative. Fait nouveau, elles distinguent maintenant entre sédation proportionnée et sédation disproportionnée. Mais la question est posée de savoir si le registre même des efforts déployés, hautement protocolisés, ne risque pas pourtant de renforcer la logique technicienne du DLC. Par ailleurs, le tableau comparatif de la HAS entre le DLC et l’euthanasie est erroné. Au final, le DLC induit une prise en charge plus intensive que palliative. Tel est le paradoxe d’une réponse technicienne aux enjeux relationnels de la souffrance en fin de vie.
As the median age of practicing physicians increases, ethical dilemmas due to age-related cognitive decline among clinicians will become ever more pressing. Compelling data show that despite acknowledgement of their duty to protect the public, physicians often fail to report themselves, their colleagues, or their physician-patients when cognitive decline appears to impact medical practice adversely. As such, efforts to educate physicians about ethical obligations and various tactful methodologies to report themselves or others seem ineffective. Illustrated by a case report of age-related cognitive decline in a practicing physician, practical recommendations are made both to develop and validate cognitive screening in middle-aged physicians, presumably before the onset of age-related cognitive decline.
BACKGROUND: The integration of palliative care into standard oncology care is supported by research to improve quality of life and symptom distress in patients with advanced cancer. In 2016, the American Society of Clinical Oncology (ASCO) released practice guidelines for oncology palliative care that emphasized interprofessional assessment and management of this patient population.
OBJECTIVES: The purpose of this study was to evaluate the effect of clinical guidelines on symptom distress in patients with advanced cancer.
METHODS: In two oncology palliative care clinics, the Edmonton Symptom Assessment Scale (ESAS) scores for pain, fatigue, and anxiety were measured prior to consultation (T1) and at two subsequent visits (T2 and T3). A standardized documentation template was used to measure fidelity for key guideline components.
FINDINGS: Pain, fatigue, and anxiety ESAS scores were statistically lower from T1 to T3. The frequency of patients having a decrease of 2 or more points for all symptoms increased compared to baseline data. There was 100% compliance to the documentation template during the guideline implementation.
INTRODUCTION: Dying patients with implantable defibrillators (ICD) have a risk of receiving unnecessary shocks before death. The aim of this study was to investigate if deactivation of shock therapy at end-of-life has increased since publication of new guidelines in 2010 on ICD management.
METHOD AND RESULTS: This is a study of two groups of ICD patients who died in hospitals before and after publication of new guidelines. Group 1 consists of 89 patients who died between 2003 and 2010. Group 2 consists of 252 patients, the total number of ICD patients in Sweden who died in hospital during 2014. Data was obtained from the Swedish ICD and Pacemaker Registry, Swedish Tax Agency and patient medical notes. Two-thirds died in wards other than Cardiology. Fifty-four percent in group 1 had a Do-Not-Resuscitate-order (DNR) compared to 73% in group 2. Shock deactivation was present in 52% in group 1 and 67% in group 2. The difference in shock deactivation between group 1 and 2 was only significant (p = 0.014) for DNR-patients treated in Cardiology. A significant difference (p = 0.036) was found in deactivation within group 2 between DNR-patients in Cardiology vs. DNR-patients in Non-Cardiology wards.
CONCLUSION: Two-thirds of ICD patients die in wards other than Cardiology. Since publication of guidelines on ICD management there is a general increase in shock deactivation for DNR-patients, but only significant for patients in Cardiology. This implicate that actions have to be taken for patients treated in Non-Cardiology wards to bridge the gap between guidelines recommendations and clinical practice.
High-quality data support multiple clinical benefits of integrating palliative care into routine oncology care. Though these data come largely from the medical oncology literature, data from surgical oncology populations support similar associations between palliative care integration and improved clinical outcomes, all without compromise in survival. This paper will review data supporting palliative care integration into oncology care, with a focus on surgical populations and recommendations for incorporating palliative care into surgical oncology.
BACKGROUND: The prevalence of diabetes mellitus (DM) is rising with an increased risk of developing it as a person ages. Therefore, more persons will have comorbid DM throughout their health journey and are potentially prone to unpleasant symptoms associated with poor glycemic control at the end of life (EOL). We performed an in-depth literature review to examine evidence-based recommendations on DM management at the EOL.
DESIGN: A librarian-assisted systematic and gray literature search was performed in electronic clinical databases and Google™ for diabetes management articles (DMAs). National and international diabetes, palliative care, and general guideline websites were searched for clinical practice guidelines (CPGs).
INCLUSION CRITERIA: adults =18 years with terminal illnesses, articles published between 2007 and 2017 with blood sugar target, monitoring frequency, and management recommendations for type 1 and type 2 DM.
EXCLUSION CRITERIA: conference poster abstracts and CPGs without published year or references. Two independent appraisers evaluated the CPGs using the "Rigour of Development" domain of the Appraisal of Guideline Research and Evaluation II (AGREE II) instrument.
RESULTS: Nine full-text DMAs were included for review from 2476 screened articles. Twenty-one CPG websites were searched. For the six included CPGs, the AGREE II "Rigour of Development" domain scores ranged from 6% to 34%. We found no high-quality evidence for DM management at the EOL. Treatment recommendations were based primarily on expert opinion (level IV evidence).
CONCLUSIONS: Higher quality studies are required to inform a standardized approach to the management of DM at the EOL.
The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care.
Objective: the aim of this study was to map end-of-life care in acute hospital settings against Elements 1-5 of the Australian Commission on Safety and Quality in Health Care's (ACSQHC) Essential Elements for Safe and High-Quality End-of-Life Care.
Methods: A retrospective medical record audit of deceased in-patients was conducted from 2016 at one public (n = 320) and one private (n = 132) hospital in Melbourne, Australia. Ten variables, key to end-of-life care according to the ACSQHC's Elements 1-5 were used to evaluate end-of-life care.
Results: Most patients (87.2%) had a limitation of medical treatment. In 91.97% (P < 0.0001) of cases, a written entry indicating poor prognosis preceded a documented decision to provide end-of-life care, with a documented decision noted in 81.1% of cases (P < 0.0001). Evidence of pastoral care involvement was found in 41.6% of cases (P < 0.0001), with only 33.1% of non-palliative care patients referred to specialist palliative care personnel (P = 0.059). An end-of-life care pathway was used in 51.1% of cases (P < 0.0001).
Conclusion: There is clear scope for improvement in end-of-life care provision. Health services need to mandate and operationalise Elements 1-5 of the ACSQHC's Essential Elements into care systems and processes, and ensure nationally consistent, high-quality end-of-life care.What is known about the topic? Acute care settings provide the majority of end-of-life care. Despite the ACSQHC's Ten Essential Elements, little is known about whether current end-of-life care practices align with recommendations. What does this paper add? There is room for improvement in providing patient-centred care, increasing family involvement and teamwork, describing and enacting goals of care and using triggers to prompt care. Differences between public and private hospitals may be the result of differences in standard practice or policy and differences in cultural diversity.What are the implications for practitioners? The Essential Elements need to be mandated and operationalised into mainstream care systems and processes as a way of ensuring safe and high-quality end-of-life care.
Palliative care has a very important role in the care of patients with motor neurone disease and their families. There is increasing emphasis on the multidisciplinary assessment and support of patients within guidelines, supported by research. This includes the telling of the diagnosis, the assessment and management of symptoms, consideration of interventions, such as gastrostomy and ventilatory support, and care at the end of life. The aim of palliative care is to enable patients, and their families, to maintain as good a quality of life as possible and helping to ensure a peaceful death.
Alors que le rapport d'information du Sénat sur la situation dans les EHPAD lui était remis, Mme Agnès Buzyn, ministre des solidarités et de la santé, disait aux sénateurs : "Le désarroi quotidien du personnel [des EHPAD] est en partie liée au fait que les personnes accueillies meurent en moyenne dans les deux ans. C'est très anxiogène et déprimant. Nous devons former le personnel et organiser la fin de vie en Ehpad." Mais comment ? Ce dossier, réalisé en collaboration avec la SFAP et le CNSPV, revient sur les droits des malades en fin de vie issus des lois du 22 avril 2005 et du 2 février 2016, apporte des données chiffrées et présente l'expérience de l'équipe mobile de soins palliatifs du Val-d'Oise, une EMSP entièrement réservée aux EHPAD.
Origine : BDSP. Notice produite par EHESP mnR0xolF. Diffusion soumise à autorisation
Les importantes évolutions démographiques et sociétales demandent que les soins palliatifs se développent au domicile des personnes malades. Les équipes mobiles, mal réparties sur le territoire, soutiennent la nécessité pour l'hôpital de se tourner vers la ville (HAD) et de participer à la coordination des soins. Celle-ci mobilise de nombreuses ressources et le médecin traitant y tient une place centrale. (R.A.).
Origine : BDSP. Notice produite par APHPDOC A9rkHR0x. Diffusion soumise à autorisation