BACKGROUND: High quality perinatal bereavement care is critical for women and families following stillbirth or newborn death. It is a challenging area of practice and a difficult area for guideline development due to a sparse and disparate evidence base.
AIM: We present an overview of the newly updated Perinatal Society of Australia and New Zealand/Stillbirth Centre of Research Excellence guideline for perinatal bereavement care. The guideline aims to provide clear guidance for maternity health care providers and their services to support the provision of care that meets the needs of bereaved parents.
DISCUSSION: The Guideline for Respectful and Supportive Perinatal Bereavement Care is underpinned by a review of current research combined with extensive stakeholder consultation that included parents and their organisations and clinicians from a variety of disciplines. The Guideline contains 49 recommendations that reflect five fundamental goals of care: good communication; shared decision-making; recognition of parenthood; effective support; and organisational response.
CONCLUSION: Best available research, parents' lived experiences and maternity care providers' insights have contributed to a set of implementable recommendations that address the needs of bereaved parents.
Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in hospice/palliative care. Results of past studies demonstrated this Strengths Guide (SG) interview to be an intervention bringing a heightened realization of the importance and utilization of one's inner strengths. The purpose of this study was to assess the long-term impact of this SG with a population of parents who participated in a previous study using the SG. This descriptive study was conducted using a quantitative tool, the Personal Strength Rating Scale, comparing the post-SG interview results with those results obtained 3 years later. Participants in this study were parents caring for a child receiving palliative/hospice care at home in Kenya. Results revealed the long-term retention of strengths following the SG interview 3 years previously was, for most sources of strength, equal to or greater than those obtained immediately following the SG.
It is common for patients with cancers in Hong Kong seeking Chinese Medicine (CM) therapies as supportive care during cancer treatment and to manage treatment-related side effects. This article provides clinical practice guideline (CPG) on the use of CM for specific clinical indications caused by cancer and during cancer treatment, including pain, constipation, and insomnia, and aims to guide local licensed CM practitioners and provide beneficial reference for social medical decision makers and patients. In this manuscript, we summarize the clinical manifestation, CM pattern classification, and CM intervention including herbal treatment, acupuncture treatment, regulating, and nursing based on pattern differentiation.
Pratique et contextualisé, ce guide actualise les connaissances sur les droits des patients et leur place à l’hôpital : grâce à la diversité de ses auteurs (cadre de santé, chargé de relations à la Haute Autorité de santé, philosophe, directeur d’hôpital, médecins de soins palliatifs, médiateur, représentant des usagers, juriste…), il propose une approche pluridisciplinaire et confronte ainsi les points de vue de professionnels qui seront amenés à collaborer et à se positionner sur ces questions au quotidien.
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On se souvient que la loi du 2 février 2016 s'était saisie de la pratique sédative en soins palliatifs pour en faire un nouveau droit pour les malades en phase terminale. Elle accorde au patient se sachant atteint d'une maladie incurable avec un pronostic vital engagé à court terme, le droit de demander une sédation profonde et continue jusqu'au décès, dans certaines circonstances.
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Breathlessness is a common symptom for patients with terminal illness and can be challenging to manage. Breathlessness is acknowledged to be an interaction between body and mind. There are a variety of pharmacological and non-pharmacological therapies that can be beneficial. The holistic assessment of the breathlessness patient should enable delivery of a tailored package of care focused on relief of symptoms.
C'est en février dernier que la 5e édition du Guide pratique de soins palliatifs de l'Association des pharmaciens en établissements de santé du Québec (A.P.E.S.) a été publié en version numérique. Cette publication est le fruit du travail bénévole des membres du Regroupement de pharmaciens experts (RPE) en soins palliatifs de l'A.P.E.S. Qui sont-ils ? Quel est cet ouvrage ?
OBJECTIVES: Historically, dementia has not been recognised as a life-limiting condition or one that may benefit from a palliative approach to its care. There are many challenges in providing palliative and end-of-life care to this group of people, some of which may be reduced through advance care planning (ACP) to support people with dementia to have a greater influence on their care at end of life. ACP has been defined as a process of discussing and recording of wishes, values and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. The objective of this project was to involve people with dementia and their family carers in co-design of ACP guide and template to prepare for further study related to communication processes in ACP.
METHODS: A user-centred design process cycle of development and review was undertaken by Dementia UK which involved people with dementia, family carers, Admiral Nurses and other key stakeholders in developing an ACP guide and template.
RESULTS: Nine cyclical stages were undertaken to achieve the outcome of an ACP guide and template.
CONCLUSION: Co-production using a user-centred design approach offers a structured and inclusive approach to developing ACP materials.Authors.
The geriatric (=65 years of age) population is one of the fastest growing age groups in the United States. As this number increases, so does the number of geriatric trauma patients. Because this group has higher mortality rates and requires more resources, a Geriatric Trauma Palliative Care Program was created at a Level 1 Trauma Center in Dallas, TX, to provide concurrent lifesaving therapies and primary palliative care to older adults. The trauma program implemented the American College of Surgeons (ACS) Trauma Quality Improvement Program Palliative Care Best Practices Guidelines (ACS, 2017) to better care for acute traumatic injuries as well as the specific spiritual, emotional, and psychiatric needs of the geriatric trauma palliative care patient and family. Using the guidelines, the team performed a gap analysis, carried out program development, created a palliative care pathway to guide our evidence-based practice implementation, and performed retrospective chart reviews for 3-month pre- and postimplementation analysis. Using Person's 2 test and Fisher's exact test, our initial evaluation of the program showed statistically significant (p < .001) improvements in the measures related to the implementation of primary palliative care, pain and symptom management, and end-of-life care. The guidelines gave the team a consistent framework for implementing the basic competencies required to deliver primary palliative care, pain and symptom management, and end-of-life care to trauma patients.
This evidence-based quality initiative project was designed to increase advance care planning and palliative care referrals, thus improving quality of life for patients with chronic kidney disease by increasing nephrology providers' knowledge of the Renal Physicians Association guidelines on "Shared Decision Making in the Appropriate Initiation of and Withdrawal from Dialysis." Thirteen nephrology providers and nurses received the educational intervention. Post-intervention outcomes included four renal palliative care referrals and 21 advance care plans over four months from a baseline of zero/unknown. The supportive benefits to nursing and society are vast, minimizing nursing, health system, and caregiver burden.
Background: Advance care planning (ACP) is a communicative process of defining preferences for future medical care. Conversation guides support professionals to conduct ACP conversations, yet insight into essential components is limited.
Objectives: To evaluate the content, rationale, and empirical evidence on the effect of ACP interventions based on conversation guides.
Methods: MEDLINE, Embase, PsycINFO, and CINAHL were searched from January 1, 1998, to February 23, 2018, to identify peer-reviewed articles describing or evaluating ACP interventions based on scripted conversation guides. A thematic analysis of the guides was performed. Data on intervention characteristics, underlying rationale, and empirical evidence were extracted by 2 authors independently using a predesigned form. Assessment of risk of bias and quality of reporting was performed using Cochrane tools and COREQ, respectively.
Results: Eighty-two articles reporting on 34 unique interventions met the inclusion criteria. Analysis of the conversation guides revealed a framework for ACP conversations consisting of 4 phases: preparation, initiation, exploration, and action. Exploration of patient's perspectives on illness, living well, end-of-life (EOL) issues, and decision making formed the core part of the guides. Their design was often expert-based, without an underlying theoretical background. Empirical evidence on the effect of the interventions was based on heterogeneous outcome measures. Dyad congruence and preference documentation rates increased among intervention subjects in most studies. The studies showed varying effects on knowledge of ACP, decisional conflict, quality of communication, and preferences-concordant care. Qualitative research showed that participants appreciate the importance and benefits of ACP conversations, yet perceive them as difficult and emotional.
Conclusion: ACP conversation guides address a diversity of themes regarding illness, EOL issues, and decision making. There is a focus on the exploration of patient's perspectives and preferences. Evidence on the translation of explorative information into specific treatment preferences and consequences for care as provided is limited.
BACKGROUND: End of life care (EOLC) for people with dementia can present a multitude of challenges and difficult decisions for practitioners. These challenges may include assessment and management of difficulties with eating and swallowing, responding to agitation, treating pain, and managing recurrent infections. Practitioners sometimes lack both confidence in making end of life decisions and guidance. This study developed an alternative to lengthy guidelines, in the form of heuristics which were tested in clinical settings. The aim of this study was to test the usability and acceptability of a set of heuristics which could be used by practitioners providing EOLC for people with dementia in a variety of clinical and care settings.
METHODS: A three phase co-design process was adopted: 1) Synthesis of evidence and outputs from interviews and focus groups with family carers and practitioners, by a co-design group, to develop heuristics; 2) Testing of the heuristics in five clinical or care settings for six months; 3) Evaluation of the heuristics at three and six months using qualitative individual and group interviews.
RESULTS: Four heuristics were developed covering: eating and swallowing difficulties, agitation and restlessness, reviewing treatment and interventions at the end of life, and providing routine care. The five sites reported that the heuristics were simple and easy to use, comprehensive, and made implicit, tacit knowledge explicit. Four themes emerged from the qualitative evaluation: authority and permission; synthesis of best practice; providing a structure and breaking down complexity; and reassurance and instilling confidence.
CONCLUSION: Use of heuristics is a novel approach to end of life decision making in dementia which can be useful to both experienced and junior members of staff making decisions. Heuristics are a practical tool which could overcome a lack of care pathways and direct guidance in end of life care for people with dementia.
Ce numéro contient les articles suivants : constat et diagnostic de mort ; le certificat médical de décès ; les formalités relatives à l'éat-civil ; toilette et inventaire ; la chambre mortuaire ; hygiène et prévention ; la sortie de l'hôpital et le transport de corps.
BACKGROUND: Family caregivers encounter many barriers to managing patients' pain in the home hospice setting. However, there are limited clinically applicable resources for hospice providers to help family caregivers identify and address these barriers.
AIM: To develop a pain management manual for hospice providers to support family caregivers and conduct a preliminary providers' evaluation of the manual.
DESIGN AND PARTICIPANTS: A pain management manual was developed and structured into 3 parts: (1) 5 common pain management case scenarios based on a secondary data analysis of a hospice clinical trial; (2) a list of suggested assessment questions and strategies for each case scenario was developed based on a caregiver framework; and (3) pain educational material was included from established clinical guidelines. The manual was vetted by 5 experts and then was evaluated by interviewing 25 hospice providers. Interview data were analyzed using thematic analysis.
RESULTS: The hospice providers found that the manual could potentially serve as a reference in their practice and be a source for their continuing education. They suggested enhancing the clarity of the case scenarios and adding additional strategies to the manual. Moreover, they suggested expanding the paper-based version and developing a web-based platform to deliver the content would maximize its utility.
CONCLUSIONS: The manual has the potential to be integrated into routine hospice care to improve the quality of pain management.
BACKGROUND: Pain in sickle cell disease (SCD) is often joined by other affective disorders such as depression and/or sleep impairment that can impact pain levels and quality of life (QoL).
AIM: To develop a guideline to improve the process of assessment and treatment of depression and sleep impairment in patients admitted with SCD.
METHOD: An interdisciplinary team used the Stetler model to create the Guideline for the Evaluation and Treatment of Depression and Sleep Impairment in Sickle Cell Disease. Patients were assessed, offered treatments and reassessed during the project period.
RESULTS: Both depression and QoL scores showed significant improvement by the end of the project. Significant correlations were found between pain, depression and sleep; depression, pain, sleep and QoL; sleep, pain and depression; and QoL and depression.
CONCLUSIONS: Interdisciplinary teams are effective in creating a guideline to assess and treat depression and sleep impairment and their effects on pain and QoL in patients with SCD.
BACKGROUND: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance.
OBJECTIVE: To engage multiple sclerosis (MS) patients and caregivers in definition of the key questions to be answered in the EAN Guideline on Palliative Care of People with Severe MS.
METHODS: A mixed methods approach was used: International online survey launched by the national MS societies of eight countries, after pilot testing/debriefing on 20 MS patients and 18 caregivers; focus group meetings (FGMs) of Italian and German MS patients and caregivers.
RESULTS: Of 1199 participants, 951 (79%) completed the whole online survey, and 934 from seven countries were analyzed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) caregivers (36% spouses/partners, 72% women, mean age 47.4). Participants agreed/strongly agreed on inclusion of the nine pre-specified topics (from 89% for 'advance care planning' to 98% for 'multidisciplinary rehabilitation'), and <5% replied 'I prefer not to answer' to any topic. There were 569 free comments: 182 (32%) on the pre-specified topics, 227 (40%) on additional topics (16 guideline-pertinent), and 160 (28%) on outcomes. Five FGMs (three of MS patients, two of caregivers, overall 35 participants) corroborated the survey findings. In addition, they allowed the explanation of the guideline production process, the exploration of patient-important outcomes and of taxing issues.
CONCLUSIONS: MS patient and caregiver involvement was resource and time intensive, but rewarding. It was key for the formulation of the 10 guideline questions, and for the identification of patient-important outcomes.