The COVID-19 pandemic poses numerous – and substantial – ethical challenges to health and healthcare. Debate continues about whether there is adequate protective equipment, testing and monitoring, and about when a vaccine might become available and social restrictions might be lifted. The thorny dilemmas posed by triage and resource allocation also attract considerable attention, particularly access to intensive care resources, should demand outstrip supply.
But the “COVID fog” clouds more than the intensive care unit. The provision and uptake of non-COVID related treatment is declining, due to the de-prioritisation of some services and interventions, alongside non-COVID patients’ fears of contracting the virus; difficult conversations are being held in suboptimal circumstances; and final farewells and death rituals have been disrupted. Healthcare personnel, meanwhile, are facing moral distress and, for some, difficulties arising from undertaking new roles in unfamiliar settings.
BACKGROUND: The purpose of palliative medicine is to optimize the quality of life of patients with incurable, progressive diseases. The care delivered in actual clinical practice is not uniform and often takes insufficient account of the currently available scientific evidence.
METHODS: In accordance with the methodological directives on systematic literature reviews and consensus-finding that have been issued by the German Oncology Guideline Program (Leitlinienprogramm Onkologie), a nationwide, representative group of experts updated the previously published seven chapters of the S3 (evidence-based and consensus-based) guideline and formulated new recommendations on a further eight topics in palliative care.
RESULTS: Non-drug options for the treatment of fatigue include aerobic exercise and psycho-educative methods, particularly cognitive behavioral therapy. Sleep disturbances can be treated with improved sleep hygiene and relaxation techniques, as well as with drugs: Z substances for short-term and sedating antidepressants for intermediate-term treatment. For nausea and vomiting, the first line of treatment consists of antidopaminergic drugs, such as haloperidol, or drugs with an antido- paminergic effect combined with a further receptor affinity, such as metoclopramide. For patients suffering from malignant intestinal obstruction (MIO), an important con- sideration for further treatment is whether the obstruction is complete or incomplete. Psychotherapeutic interventions are indicated for the treatment of anxiety.
CONCLUSION: Multiple studies have confirmed the benefit of the early integration of palliative care for achieving the goals of better symptom control and maintenance of derate quality of evidence supporting the management of certain symptoms in patients with incurable cancers.
Whenever parents lose their child, it is an enormously emotionally stressful situation for the family, regardless of whether the child is a stillborn or dies later in life. The earlier this painful loss occurs, the more precious becomes every opportunity for the family to spend with their child, providing care as well as saying goodbye.
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OBJECTIVES: The number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions in LTCFs. The PACE study mapped palliative care in LTCFs in Europe, evaluated quality of end-of-life care and quality of dying in a cross-sectional study of deceased residents of LTCFs in 6 countries, and undertook a cluster-randomized control trial that evaluated the impact of the PACE Steps to Success intervention in 7 countries. Working with the European Association for Palliative Care, a white paper was written that outlined recommendations for the implementation of interventions to improve palliative and end-of-life care for all older adults with serious illness, regardless of diagnosis, living in LTCFs. The goal of the article is to present these key domains and recommendations.
DESIGN: Transparent expert consultation.
SETTING: International experts in LTCFs.
PARTICIPANTS: Eighteen (of 20 invited) international experts from 15 countries participated in a 1-day face-to-face Transparent Expert Consultation (TEC) workshop in Bern, Switzerland, and 21 (of 28 invited) completed a follow-up online survey.
METHODS: The TEC study used (1) a face-to-face workshop to discuss a scoping review and initial recommendations and (2) an online survey.
RESULTS: Thirty recommendations about implementing palliative care for older people in LTCFs were refined during the TEC workshop and, of these, 20 were selected following the survey. These 20 recommendations cover domains at micro (within organizations), meso (across organizations), and macro (at national or regional) levels addressed in 3 phases: establishing conditions for action, embedding in everyday practice, and sustaining ongoing change.
CONCLUSIONS AND IMPLICATIONS: We developed a framework of 20 recommendations to guide implementation of improvements in palliative care in LTCFs.
A challenge in end-of-life care is requests by patients or their substitute decision-makers for treatment that doctors consider is "futile" or "non-beneficial". Concerns that these concepts are uncertain and subjective have led to calls for medical policies to clarify terminology and to provide procedural solutions to prevent and address disputes. This article provides a comprehensive analysis of how Australian medical guidelines and policies on withholding or withdrawing potentially life-sustaining treatment address futility. It demonstrates that while the concept is found throughout medical policies and guidelines, the terminology employed is inconsistent. There is also variability in the extent of guidance given about unilateral decision-making and mechanisms for dispute resolution. This is problematic, given that the question of further treatment can often only be determined in relation to the individual patient's goals and values. We conclude by advocating for the development of a unified policy approach to futile or non-beneficial treatment in Australia.
The use of long-term and continuous intravenous inotropic support (CIIS) has increased over the past decade. Published evidence indicates that CIIS improves New York Heart Association functional class but does not impact survival. American College of Cardiology/American Heart Association (ACC/AHA) guidelines published in 2013 delineated indications for intravenous inotropic support. Long-term CIIS as palliative therapy (i.e., aim is symptomatic improvement in patients who are not appropriate for surgical therapies) in patients with ACC/AHA Stage D congestive heart failure (CHF) despite optimal medical treatment and device therapy was assigned a Class IIb recommendation (Level of Evidence B).
A huge proportion of people with Parkinson’s disease (PwP) in Germany have written an advance directive (AD). However, the content of these forms in regard to specific Parkinson’s disease (PD)-related complications is rather low. There is an urgent need to specify ADs of PwP and consequently to improve decision-making concerning end-of-life aspects for affected patients. Evidence- and consensus-based PD-specific recommendations for ADs might help to close this gap. A Delphi study with two online Delphi rounds was initiated. Initial recommendations were built on findings from previous studies and derived from evidence-based literature. Consensus on recommendations was defined as =80% concordance regarding clarity of formulated aspects and relevance for clinical practice. A total of 22 experts (15.2% response rate) predominantly from the workgroup ‘neuro-palliative care’ in Germany performed two Delphi rounds. Consensus was achieved for 14 of 24 initially presented recommendations. Recommendations relating to dopaminergic therapy as well as to non-oral therapy options were considered important by the expert panel. The recommendations should be taken into account when developing and giving advice on ADs for PwP. Health professionals should be trained in counselling ADs of PwP and in integrating these recommendations in ADs during the disease course of PD.
Ces recommandations de la Haute Autorité de Santé ont pour objectifs de mieux définir les modalités d'utilisation des traitements médicamenteux, en particulier hors AMM, en situation palliative et phase terminale chez l'adulte :
- pour l'antalgie des douleurs rebelles ou la prévention des douleurs rebelles provoquées ;
- pour la sédation, qu'elle soit proportionnée ou profonde et continue maintenue jusqu'au décès ;
- y compris, le cas échéant, les modalités spécifiques au domicile.
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BACKGROUND: The definition of the eligibility criteria of newborn, infant, child, or adolescent patients for palliative care (PC) is complicated by the fact that these patients generally present with very specific case histories that make it inadvisable to directly adopt existing PC protocols devised for adult patients. Thus, the goal of this paper is to define a standard set of criteria for establishing pediatric palliative care (PPC) eligibility.
METHODS: The method adopted was that of the consensus conference. According to the guidelines issued by the Higher Institute of Health, the Board of the Italian Society for Palliative Care (i.e. steering committee) appointed a multidisciplinary group of eight health care professionals (i.e. doctors, nurses and psychologists) who worked from May 2014 to February 2016 to reach a consensus over PPC eligibility. This panel of relevant experts redacted a report summarizing all available scientific information concerning PPC, which was then submitted to the attention of a multidisciplinary jury composed of specialists and non-specialists of the field. The document thus produced was subsequently reviewed by an extended team of experts.
RESULTS: The consensus conference drafted a final document determining the guidelines for PPC eligibility of newborns, infants, children, and adolescents suffering from either oncological or non-oncological diseases.
CONCLUSIONS: This report provides health care providers with practical guidelines on how to define the eligibility of pediatric patients for PPC. Given the current situation in Italy, these guidelines will be instrumental in assisting the implementation of adequate generalist and specialist PPC services as well as in helping policymakers draft and implement national legislation pertaining to PPC.
Human immunodeficiency virus infection is incurable. About 770 000 people died of HIV worldwide in 2018. More than two-thirds of these died in Africa (UNAIDS Global Aids Update 2019). Although Statistics South Africa has recorded some improvement in the overall survival, HIV-related levels of morbidity and mortality remain high. Mortality is greatest among those not on antiretroviral therapy (ART), that is, either naïve to ART or those who have stopped taking medication and are outside of care. Mortality is also high in he first year after the start of ART. Of South Africa’s 7.97 million people living with HIV (PLWHIV) in 2019, only 4.94 million are on ART. A
detectable viral load while on ART is usually a sign of treatment failure or poor viral control. These persons are also at increased risk of HIV-related morbidity and mortality.
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Purpose: International guidelines are available to guide prescription of antiemetic and pain flare medications in patients receiving palliative radiotherapy for bone metastases, but prescription rates are quite variable. We hypothesized that a simple electronic quality checklist could increase the evidence-based use of these medications.
Materials and methods: We implemented an electronic quality checklist item in our center for all patients treated with palliative radiotherapy for lumbar spine bone metastases. We retrospectively reviewed patients in the 6-month pre- and post-intervention. Patients were stratified according to if they were treated within a dedicated rapid palliative (RPAL) radiotherapy program or not. Chi-square tests were used to compare rates of antiemetic and pain flare medications pre- and post-intervention and RPAL vs not.
Results: A total of 375 patients were identified with 42 (11.2%) treated in dedicated RPAL program. The proportion of patients treated with prophylactic antiemetic and pain flare medications pre-intervention (n = 226) and post-intervention (n = 149) was respectively 34.1% vs 59.1% (p < 0.001) and 26.1% vs 43.0% (p = 0.01). Observed differences for antiemetic prescription rates were greater for patients who were not treated within a dedicated palliative radiotherapy program, but this was not the case for pain flare medications.
Conclusions: Our data shows that a simple quality checklist item can have a significant effect on the evidence-based use of prophylactic antiemetic and pain flare medications in patients treated with palliative radiotherapy for bone metastases. We believe such strategies should be routinely included in other clinical pathways to improve the use of symptom control medications.
BACKGROUND: Palliative care trials have higher rates of attrition. The MORECare guidance recommends applying classifications of attrition to report attrition to help interpret trial results. The guidance separates attrition into three categories: attrition due to death, illness or at random. The aim of our study is to apply the MORECare classifications on reported attrition rates in trials.
METHODS: A systematic review was conducted and attrition classifications retrospectively applied. Four databases, EMBASE; Medline, CINHAL and PsychINFO, were searched for randomised controlled trials of palliative care populations from 01.01.2010 to 08.10.2016. This systematic review is part of a larger review looking at recruitment to randomised controlled trials in palliative care, from January 1990 to early October 2016. We ran random-effect models with and without moderators and descriptive statistics to calculate rates of missing data.
RESULTS: One hundred nineteen trials showed a total attrition of 29% (95% CI 28 to 30%). We applied the MORECare classifications of attrition to the 91 papers that contained sufficient information. The main reason for attrition was attrition due to death with a weighted mean of 31.6% (SD 27.4) of attrition cases. Attrition due to illness was cited as the reason for 17.6% (SD 24.5) of participants. In 50.8% (SD 26.5) of cases, the attrition was at random. We did not observe significant differences in missing data between total attrition in non-cancer patients (26%; 95% CI 18-34%) and cancer patients (24%; 95% CI 20-29%). There was significantly more missing data in outpatients (29%; 95% CI 22-36%) than inpatients (16%; 95% CI 10-23%). We noted increased attrition in trials with longer durations.
CONCLUSION: Reporting the cause of attrition is useful in helping to understand trial results. Prospective reporting using the MORECare classifications should improve our understanding of future trials.
Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round and, of those, 13 recommendations were chosen as the most important (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care centers: Every healthcare center should ensure access to PC medicines, and 5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
Palliative care is defined by the World Health Organization as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness…”. The last days and hours of a person’s life can be associated with immense physical as well as emotional suffering. Relief of pain and other distressing symptoms, and enhancement of quality of life, are among the essential elements of good palliative care. Palliative care could benefit an estimated 69% to 82% of dying individuals in Canada. As Canada’s population ages, with increasing prevalence of chronic conditions and treatments resulting in prolonged life, it is expected that there will be an increased need for palliative care services. Approximately 9% of Canadians (or 2.7 million) reported using cannabis for medical purposes in the first half of 2019.4 Herbal cannabis (cannabis sativa) contains hundreds of pharmacological components, many of which are not well-characterized. Tetrahydrocannabinol (THC) is the most prevalent pharmacologically active compound and is primarily responsible for the psychoactive and physical effects of cannabis. Cannabidiol (also commonly referred to as CBD) is the second most prevalent. It has very little if any psychotropic effects. Quantity and ratio of these and other components can vary considerably between plants and even within the same plant. Two prescription cannabinoids are currently marketed in Canada: Nabiximols (Sativex) which contains THC and cannabidiol, and Nabilone (Cesamet) which is a synthetic cannabinoid. Dronabinol (Marinol), synthetic THC, was withdrawn from the Canadian market however it is available in other jurisdictions. For the purposes of this report, medical cannabis refers to use of the cannabis plant or its extracts or synthetic cannabinoids for medical purposes. Medical cannabis may be of value for a number of conditions, including but not limited to pain, nausea and vomiting, depression, anxiety and appetite stimulation. Adverse effects of cannabis are very common, developing in 80% to 90% of patients. These include but are not limited to psychiatric disturbances, sedation, speech disorders, impaired memory, dizziness, ataxia, addiction, irritability, and driving impairment. Risk of adverse effects is likely lower with cannabidiol alone as compared to THC. The potential for drug interactions is also an important concern. These risks must be considered along with the an apparent lack of evidence surrounding effectiveness of medical cannabis in many conditions for which its use is promoted. This report updates and expands on a previous summary of abstracts report.9 The objective of the report is to review evidence and guidelines for use of medical cannabis in the palliative care setting.
Patients undergoing cardiothoracic surgery face a small but significant mortality risk. Despite this, end-of-life care specific to this population has received little attention. This article examines current literature on end-of-life care in cardiothoracic surgery and in critical care. Recommendations for management at the end of life are made based on the available evidence.
Background: Recently, there has been a growing interest in the use of artificial hydration therapy (AHT) for patients with terminal cancer. The Japanese Society for Palliative Medicine published the guideline for AHT in 2007, and it was revised in 2013 based on the concept of cancer cachexia.
Objectives: The purpose of this study was to evaluate the effects of AHT for patients with terminal cancer having overhydration symptoms based on this revised guideline.
Methods: This is a before-and-after study. We retrospectively analyzed 121 patients, of the 523 patients with terminal cancer who were admitted during the last 4 years, who were receiving “inappropriate hydration therapy.” We performed guideline-based AHT and examined the effects on the alleviation of hydration-related symptoms, quality of life (QOL), patient satisfaction, and the feeling of benefit from AHT using a numeric rating scale, European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire-C30, satisfaction scale, and benefit scale on day 7 ± 1 compared to those at baseline.
Results: Hydration-related symptoms (nausea: 32, abdominal pain/distention: 35, peripheral edema: 42, and dyspnea: 28 cases) were significantly improved after performing guideline-based AHT (5.35 ± 1.26 4.00 ± 1.51, P = .002; 5.41 ± 1.44 4.12 ± 1.52; P = .005; 5.16 ± 1.38 3.29 ± 1.66; P < .0001; and 5.24 ± 1.22 4.21 ± 1.53, P = .002, respectively). The general QOL scores, overall satisfaction, and feeling of benefit were also significantly improved (2.67 ± 1.21 3.98 ± 1.55, P < .0001; 2.25 ± 1.35 3.48 ± 1.44, P < .0001; and 3.12 ± 1.24 4.31 ± 1.38, P = .0001, respectively).
Conclusions: An appropriate AHT could alleviate overhydration-related symptoms and improve the QOL, patient satisfaction, and feeling of benefit.
The main goal of palliative care is to relieve suffering. Opioids are an essential part of the pharmacological options required to address suffering by helping to relieve the pain and chronic breathlessness that may be experienced by someone with a life-limiting illness. This paper considers the recent history and current issues of the 'opioid crisis' providing recommendations to which regulatory and peak bodies can work with the Australian government, ensuring consistent adherence to WHO guidelines maintaining access to evidence based opioid management for palliative care patients whilst actively avoiding unintended suffering restricted access can cause. The recommendations are as follows:Review of the Palliative Care schedule of the Pharmaceutical Benefit Scheme Support of prescribers with current evidence, clinical practice guidelines and regulatory frameworks National opioid prescribing policies promoting linkages between palliative care and pain and addiction specialists. National real time monitoring of all opioid prescriptions Palliative care involvement in all opioids stewardship programs in acute services. Reform Medical Benefits Schedule to improve access for primary and other speciality practitioners to provide palliative care services. Compulsory palliative care education in undergraduate medical, nursing and allied health tertiary courses. Adequate, consistent stock of evidence based opioids for palliative care in community pharmacies and residential aged care facilities.These recommendations provide the regulatory guidance required to ensure persons with life limiting illness have continued access to safe and effective medication that can relieve suffering.
Background: Periprocedural providers are encountering more patients with code status limitations (CSLs) regarding their preferences for resuscitation and life-sustaining treatment who choose to undergo palliative procedures. Surgical and anesthesia guidelines for preprocedural reconsideration of CSLs have been available for several years, but it is not known whether they are being followed in practice.
Objective: We assessed compliance with existing guidelines for patients undergoing venting gastrostomy tube (VGT) for malignant bowel obstruction (MBO), serving as an example of a palliative procedure received by patients near the end of life.
Design: Code status was determined at admission and throughout the hospitalization by chart review. Documentation of code status discussions (CSDs) was identified from provider notes and compared with existing guidelines.
Setting/subjects: An institutional database retrospectively identified patients who underwent VGT placement for MBO at two academic hospitals (2014-2015).
Measurements: We identified 53 patients who underwent VGT placement for MBO. Interventional radiologists performed 88% of these procedures. Other periprocedural providers involved in these cases included surgeons, gastroenterologists, anesthesiologists, and sedation nurses.
Results: CSLs were documented before the procedure in only 43% of cases, and a documented CSD with a periprocedural provider was identified in only 22% of CSL cases. Of all VGT placements performed in patients with CSLs before the procedure, only 13% were compliant with the guidelines of preprocedural reconsideration of CSLs.
Conclusions: Increased compliance with guidelines published by the American Society of Anesthesiologists, the American College of Surgeons, and the Association of Perioperative Registered Nurses is necessary to ensure goal-concordant care of patients with CSLs who undergo a procedure. Efforts should be made to incorporate these guidelines into the training of all periprocedural providers.
Heart failure is a complex entity, with high morbidity and mortality. The clinical course and outcome are uncertain and difficult to predict. This document, instigated by the Heart Failure and Geriatric Cardiology Working Groups of the Spanish Society of Cardiology, addresses various aspects related to palliative care, where most cardiovascular disease will eventually converge. The document also establishes a consensus and a series of recommendations with the aim of recognizing and understanding the need to implement and progressively apply palliative care throughout the course of the disease, not only in the advanced stages, thus improving the care provided and quality of life. The purpose is to improve and adapt treatment to the needs and wishes of each patient, who must have adequate information and participate in decision-making.