We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
BACKGROUND: Research with persons with dementia is important to better understand the causes of dementia and to develop more effective diagnostics, therapies, and preventive measures. Advance Research Directives (ARDs) have been suggested as a possible solution to include persons with dementia in research in an ethically sound way. Little is known about how people, especially those affected by cognitive impairment, understand and regard the use of ARDs, as empirical studies are mainly conducted with healthy, non-cognitively impaired, participants.
METHODS: This qualitative study, a sub-study of a larger study on the evaluation of ARDs in the context of dementia research in Germany, consists of semi-structured in-depth interviews with 24 persons with cognitive impairment.
RESULTS: Our results indicate that most participants consider ARDs a valuable tool for allowing them to make their own decisions. Many would prefer to draft an ARD when they are still healthy or soon after the diagnosis of cognitive impairment. Participants suggested that the completion of ARDs can be advanced with the provision of practical support and increased dissemination of information on ARDs in society.
CONCLUSION: Persons with subjective or mild cognitive impairment (SCI/MCI) suggested several motivating factors and concerns for completing an ARD. Clinicians need to be trained to accommodate patients' needs for sufficient and adequate information. Furthermore, a standardised, partly pre-formulated template could be helpful for drafting an ARD. As such tested templates are currently not yet available, this addresses the urgent need for more translational and implementation research for the use of ARDs.
BACKGROUND: With the highest number of cases in the world as of April 13, 2020, New York City (NYC) became the epicenter of the global coronavirus disease 2019 (COVID-19) pandemic. The data regarding palliative team involvement in patients with COVID-19, however, remains scarce. We aimed to investigate outcomes of palliative team involvement for the patients with COVID-19 in NYC.
METHODS: Consecutive 225 patients with confirmed COVID-19 requiring hospitalization in our urban academic medical center in NYC were analyzed. Patients were divided into 2 groups, those with a palliative care consult (palliative group: 14.2% [n = 32]) versus those with no palliative care consult (no palliative group: 85.8% [n = 193]).
RESULTS: The palliative group was older and had more comorbidities. During the hospital course, the palliative group had more intensive care unit stays, rapid response team activations, and more use of vasopressors (P < .05). Patients with palliative care had higher rates of invasive mechanical ventilation than those without (46.9% vs 10.4%, P < .001). Cardiopulmonary resuscitation was performed in 12 patients (6.5% vs 5.2%, P = .77) and death rate was 100% in both subsets. Notably, initial code status was not different between the 2 groups, however, code status at discharge was significantly different between them (P < .001). The rate of full code decreased by 70% in the palliative group and by 47.5% in the no palliative care group from admission to the time of death.
CONCLUSIONS: Critically ill patients hospitalized for COVID-19 benefit from palliative team consults by helping to clarify advanced directives and minimize futile resuscitative efforts.
OBJECTIVE: To measure the effectiveness of a brief intervention aimed at increasing interest in and use of advanced directives (AD) among primary care patients.
METHODS: Randomized controlled trial. In the intervention arm, patients were given brief oral information and a leaflet on AD by General Practitioners (GPs), in the control group were briefly informed about the study's purpose. Outcome variables were the proportion of patients who expressed interest in AD and those who completed one. Covariates were sex, age, education, race, Charlson comorbidity index (CCI), religion, and possession of financial will.
RESULTS: Overall, 332 patients were recruited; 58 in the intervention and 36 in the control group expressed interest in AD (p = 0.033) and 18 (5.4 %) made an AD (nine in each group). Variables associated with interest were Caucasian race (odds ratio [OR], 1.88), the intervention (OR, 1.86), and CCI extreme scores (OR, 0.36). Variables associated with AD completion were primary education/no schooling (OR, 5.69) and fewer children (OR, 0.57).
CONCLUSIONS: A brief oral and written intervention delivered by GP significantly increased interest in AD and achieved a completion rate of 5.4 %, without differences with the control group.
PRACTICE IMPLICATIONS: AD interventions should focus on individuals already likely to be motivated.
OBJECTIVES: Adult day service centers (ADSCs) may serve as an entrée to advance care planning. This study examined state requirements for ADSCs to provide advance directives (AD) information to ADSC participants, ADSCs' awareness of requirements, ADSCs' practice of providing AD information, and their associations with the percentage of participants with ADs.
METHODS: Using the 2016 National Study of Long-Term Care Providers, analyses included 3,305 ADSCs that documented ADs in participants' files. Bivariate and linear regression analyses were conducted.
RESULTS: Nine states had a requirement to provide AD information. 80.8% of ADSCs provided AD information. 41.3% of participants had documented ADs. There were significant associations between state requirement, awareness, and providing information with AD prevalence. State requirement was mediated by awareness.
DISCUSSION: This study found many ADSCs provided AD information, and ADSCs that thought their state had a requirement and provided information was associated with AD prevalence, regardless of state requirements.
Les infirmiers peuvent apporter une aide à la décision dans les situations d’urgence lors d’un choc septique, notamment si le malade n’a pas rédigé de directives anticipées et/ou désigné une personne de confiance. Ils peuvent entreprendre ou faciliter la collégialité des décisions nécessaires sur le plan juridique et éthique. Les habitus d’une équipe à la réflexion éthique et au recueil de données initial sont les garants du respect de la parole du patient.
Purpose: To investigate the prevalence of advance directives, healthcare proxies, and legal representatives in Austrian intensive care units (ICUs), and to explore barriers faced by adults engaged in the contemplation and documentation phase of the advance care planning process.
Methods: Two studies were conducted: (1) A 4-week multicenter study covering seven Austrian ICUs. A retrospective chart review of 475 patients who presented to the ICUs between 1 January 2019 and 31 January 2019 was conducted. (2) An interview and focus group study with 12 semi-structured expert interviews and three focus groups with 21 adults was performed to gain insights into potential barriers faced by Austrian adults planning medical decisions in advance.
Results: Of the 475 ICU patients, 3 (0.6%) had an advance directive, 4 (0.8%) had a healthcare proxy, and 7 (1.5%) had a legal guardian. Despite the low prevalence rates, patients and relatives reacted positively to the question of whether they had an advance directive. Patients older than 55 years and patients with children reacted significantly more positively than younger patients and patients without children. The interviews and focus groups revealed important barriers that prevent adults in Austria from considering planning in advance for potentially critical health states.
Conclusion: The studies show low prevalence rates of healthcare documents in Austrian ICUs. However, when patients were asked about an advance directive, reactions indicated positive attitudes. The gap between positive attitudes and actual document completion can be explained by multiple barriers that exist for adults in Austria when it comes to planning for potential future incapacity.
Le respect de l’autonomie du patient est essentiel. Il peut rédiger des directives anticipées en vue d’une situation où il ne pourrait plus s’exprimer. Actuellement, peu de personnes les ont rédigées. Nous avons réalisé une étude sur la faisabilité de la mise en place systématique des directives anticipées chez des patients hémodialysés. Cette étude prospective monocentrique a été menée dans un centre d’hémodialyse ambulatoire en 4 étapes : un questionnaire remis aux soignants ; la sélection puis l’information des patients ; la rédaction assistée des directives anticipées par les patients intéressés ; l’évaluation des causes de non-participation. Les soignants connaissent mal le dispositif et ont des réticences : le manque de connaissances médicales du patient, l’angoisse générée par la discussion sur la fin de vie. Cinquante-six patients (51,6 %) ont été inclus et ont reçu les informations. Neuf d’entre eux ont souhaité rédiger leurs directives anticipées sur un formulaire adapté, huit les ont finalisées (7,4 % de la population initiale). La majorité souhaitait une limitation thérapeutique. Vingt-neuf patients ayant reçu l’information n’ont pas souhaité les rédiger, les raisons étant : ils se sentent bien ou pensent que leurs proches prendraient les bonnes décisions. Dix-huit patients sont sortis du centre pendant l’étude. Le développement des directives anticipées nécessite l’information et la formation des soignants, ainsi que l’accompagnement des patients. Peu de patients sont allés au bout de la démarche. La limite de la « compétence » du patient à décider pour lui est difficile à définir. Le rôle du médecin est central pour l’accompagner.
Anyone’s life can turn upside down. Illness, disease, and accidents can jeopardize the life of anyone at any time. For families and their loved ones who fall victim to a serious medical crisis or disease, a little preparation can make a big difference. A 2018 survey revealed that 92% of adults know it is important to share their medical preferences with family and medical providers in preparation for end of life. Only 32% report they have shared their wishes.
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Introduction: Advance directives are legal documents which individuals draw up to declare their treatment preferences and to appoint well-informed proxies to safeguard patient autonomy in critical situations when that individual is temporarily or no longer able to communicate these preferences. On December 22, 2017, the Italian Parliament approved the first law on end of life (“Provisions for informed consent and advance directives” L.219/2017), after a heated public and political debate lasting almost twenty years.
Objective: The aim of this study was to investigate the awareness, knowledge, opinions and attitudes regarding Italian Law 219/2017 and advance directives among the Italian population 15 months after its entry into force.
Methods: A nationwide population-based survey was conducted by a certified public opinion survey company. A sample size of 2000 interviews was planned. A structured questionnaire was developed to investigate awareness, opinions and attitudes concerning the law by a multiprofessional research team. The agreed-on version was pretested on a sample of 70 selected participants.
Results: The sample included 2000 valid interviews; 70.1% of respondents declared they had heard about the law on informed consent and advance directives. Respondents were asked to express their overall opinion on the law’s utility and importance: 88% declared that the law was quite or very important and 76% had a positive attitude towards making/registering advance directives.
Conclusion: The principles of Italian Law 219/2017 are aligned with the ethical sentiment of the vast majority of the Italian population. It is crucial to stimulate discussion to increase knowledge and awareness in order to increase the number of advance directives.
Patient portals can play an innovative role in facilitating advanced care planning (ACP) and documenting advance directives (ADs) among older adults with multiple chronic conditions. The objective of this qualitative sub-study was to (1) understand older adults’ use of an ACP patient portal section and (2) obtain user-design input on AD documentation features. Although some older adults may be reluctant, participants reported likely to use a portal for ADs with proper portal design and support.
Alongside increasing rates of dementia diagnoses worldwide, efforts to seek alternative end-of-life options also increase. While the concept of assisted dying remains controversial, the discussion around its provision for people with dementia raises even more sensitivity. In this study, we explored how the practice of assisted dying for people with dementia is conceptualized and understood using the shared narratives of online contributors. An observational netnography over 20 months was carried out within five open Facebook communities. Thematic analysis was conducted on 1,007 online comments about assisted dying and dementia. Results reflected four central themes and five subthemes: understanding dementia; understanding assisted dying laws; caregivers’ feelings; and moral/personal dilemmas. Findings reveal that the majority of communities’ contributors fear developing dementia. They support the provision of advance euthanasia directives—written by competent patients—to prevent unnecessary suffering, and protect patients’ wishes and freedom of choice when decision-making competency is lost.
Deactivation of an implantable cardioverter-defibrillator (ICD) is a critical issue in the advance care planning (ACP) of ICD recipients; however, related perspectives have rarely been explored. Thus, this study aimed to provide an initial investigation of ICD recipients’ perceived susceptibility and barriers/benefits regarding ACP and/or advance directives (ADs), and associations of these modifiable factors with preferences for end-of-life life-sustaining treatments (LSTs) (cardiopulmonary resuscitation (CPR), ventilator support, hemodialysis, and hospice care). Using a descriptive correlational design, 48 ICD recipients (age, 50.1 years; male, 85.4%) completed survey questionnaires. “No burden on family” was the most highly valued (59.1%), followed by “comfortable death” (20.4%), and both (11.4%). LST preference was 43.8% for ventilator support, 45.8% for both hemodialysis and hospice care, and 54.2% for CPR. Perceived susceptibility to having unexpected end-of-life experiences increased the likelihood of preference for aggressive LSTs, with preferences increasing by 15% for CPR, 17% for ventilator support, and 23% for hemodialysis. A non-modifiable factor, older age, was the only predictor of increased preference for hospice care (odds ratio = 1.09, p = 0.016). Among the modifiable factors, a higher perceived susceptibility increased the likelihood of aggressive LST preferences. The findings imply that to facilitate informed decisions for LSTs, early ACP discussion could be helpful and enhance these modifiable factors.
Background: Emergency departments routinely offer cardiopulmonary resuscitation and endotracheal intubation to patients in resuscitative states. With increasing longevity and prevalence of chronic conditions in Australia, there has been growing need to uptake and implement advance care directives and resuscitation plans. This study investigates the frequency of the presence of advance care directives and resuscitation plans and its utilisation in cardiopulmonary and endotracheal intubation decision making.
Methods: Retrospective audit of electronic patients’ medical records aged =65 years presenting over a 3-month period. Data collected included demographics, triage categories, advance care directive and/or resuscitation plans/orders status.
Results: A total of 6439 patients were included representing 29% of the total patient population during the study period. Participants were randomly selected (N = 300); mean age was 78.7 (±8.1) years. An advance care directive was present in only 8% and one in three patients (37%) had a previous resuscitation plan/order. Senior consultant was present at the department for consultation by junior doctors for most of the patients (82%). Acknowledgment of either advance care directive or resuscitation plans/orders in clinical notes was only 9.5% (n = 116).
Conclusion: Advance care directive prevalence was low with resuscitation plans/orders being more common. However, clinician acknowledgement was infrequent for both.
Objective: We studied if preferences about end-of-life care of people having an advance directive (AD) stay stable over time and if (in) stability is associated with health status.
Methods: A longitudinal cohort study with a population owning different types of ADs (n = 4638). Respondents repeatedly answered questionnaires between 2005-2010. Using hypothetical scenarios about advanced cancer and dementia we assessed preferences for continuing or forgoing resuscitation, mechanical ventilation, artificial nutrition and antibiotics. Using generalized estimated equations we analysed whether life-events and quality of life influenced changes in preferences.
Results: The proportion of respondents with stable preferences ranged from 67 to 98 %. Preferences were most stable concerning resuscitation and least stable concerning mechanical ventilation. In only a few instances we found life-events or a change in quality of life could both increase or decrease odds to change preferences.
Conclusion: Preferences concerning continuing or forgoing treatment at the end of life are stable for a majority of people with ADs, which supports their validity.
PURPOSE: Providers have cited fear of taking away hope from patients as one of the principal reasons for deferring advance care planning (ACP). However, research is lacking on the relationship between ACP and hope. We sought to investigate the potential association between ACP and hope in advanced cancer.
METHODS: This is a cross-sectional analysis of baseline data from a primary palliative care intervention trial. All patients had advanced solid cancers. Three domains of ACP were measured using validated questions to assess discussion with oncologists about end-of-life (EOL) planning, selection of a surrogate decision maker, and completion of an advance directive. Hope was measured using the Hearth Hope Index (HHI). Multivariable regression was performed, adjusting for variables associated with hope or ACP.
RESULTS: A total of 672 patients were included in this analysis. The mean age was 69.3 ± 10.2 years; 54% were female, and 94% were White. Twenty percent of patients (132 of 661) reported having a discussion about EOL planning, 51% (342 of 668) reported completing an advance directive, and 85% (565 of 666) had chosen a surrogate. There was no difference in hope between patients who had and had not had an EOL discussion (adjusted mean difference in HHI, 0.55; P = .181 for adjusted regression), chosen a surrogate (adjusted HHI difference, 0.31; P = .512), or completed an advance directive (adjusted HHI difference, 0.11; P = .752).
CONCLUSION: In this study, hope was equivalent among patients who had or had not completed 3 important domains of ACP. These findings do not support concerns that ACP is associated with decreased hope for patients with advanced cancer.
Due to cultural traditions, most Taiwanese do not have an advance directive or healthcare proxy. We explored how patients with mild dementia in Taiwan may still make self-determined decisions concerning advance directives for their healthcare and end-of-life care choices as the disease progresses. We examined 260 respondents with mild dementia at a Taiwan medical center: 199 patients who agreed (and 61 patients who disagreed) with the concept of advance directives completed a structured questionnaire. Multiple logistic regression models to determine the between-group differences revealed that the following were positively associated with approval of end-of-life directives: maintaining one's quality of life (adjusted odds ratio [AOR], 2.44; 95% CI: 1.07-5.53), discussion with family members (AOR, 3.50; 95% CI: 1.49-8.26), and friend support networks (AOR, 3.36; 95% CI: 1.34-8.43). Cardiopulmonary resuscitation (AOR, 0.27; 95% CI: 0.09-0.79) was negatively associated with approval. There was also a positive association between the support of the legal validity of end-of-life directives (OR, 1.93; 95% CI: 1.07-3.48), without other confounding factors. In Taiwanese society, we remain mindful of cultural influences that may impact patients, including maintaining one's quality of life, discussion with family members, and friend/support networks. These influences may help dementia patients complete their advance directives.
Background: Use of implantable cardioverter defibrillators is increasingly common. As patients approach the end of life, it is appropriate to deactivate the shock function.
Aim: To assess the prevalence of implantable cardioverter defibrillator reprogramming to deactivate the shock function at the end of life and the prevalence of advance directives among this population.
Design: Following a previously established protocol available in PROSPERO, we performed a narrative synthesis of our findings and used the logit transformation method to perform our quantitative synthesis.
Data sources: We searched seven bibliographic databases (Embase, Cochrane Central register of controlled Trials, Medline-Ovid, Web-of-Science, Scopus, PsychInfo, and CINAHL) and additional sources until April 2019.
Results: Of the references we identified, 14 were included. We found a pooled prevalence of implantable cardioverter defibrillator reprogramming at the end of life of 28% (95% confidence interval, 22%–36%) with higher reprogramming rates after the recommendations for managing the device at the end of life were published. Among patients with advance directives, the pooled prevalence of advance directives that explicitly mentioned the device was 1% (95% confidence interval, 1%–3%).
Conclusions: The prevalence of implantable cardioverter defibrillator reprogramming and advance directives that explicitly mentioned the device was very low. Study data suggested reprogramming decisions were made very late, after the patient experienced multiple shocks. Patient suffering could be ameliorated if physicians and other healthcare professionals adhere to clinical guidelines for the good management of the device at the end of life and include deactivating the shock function in the discussion that leads to the advance directive.
L’objectif de l’étude est d’identifier les freins et les leviers à la mise en place de la démarche palliative en EHPAD. C’est une étude ancillaire. Nous avons mené une enquête qualitative par entretiens semi-directifs auprès de médecins coordonnateurs d’EHPAD en Lorraine. Le recueil de données a débuté en janvier 2018 et s’est achevé en juin 2018. Les verbatim ont été analysés par théorisation ancrée. Onze médecins coordonnateurs ont participé à notre enquête. L’analyse met en évidence des contraintes structurelles et conjoncturelles propres à l’EHPAD dont l’absence de permanence médicale et infirmière, les limites des moyens matériels et personnels, ainsi que la possibilité des EHPAD intra-hospitaliers de s’affranchir de ces contraintes. La sensibilisation et la formation des acteurs de la prise en soins ont été identifiées comme des leviers majeurs dans la prise en charge palliative. À l’inverse, le manque de formation est apparu comme un obstacle. L’intervention des équipes ressources hospitalisation à domicile et équipe mobile de soins palliatifs est décrite comme un appui primordial. L’analyse a montré que l’organisation et la coopération des différents acteurs est un enjeu majeur pour la mise en place de la démarche palliative. Les dispositifs de personne de confiance et directives anticipées sont mal utilisés et ne sont d’aucune aide à la démarche palliative dans les EHPAD. Ainsi, la majorité des freins identifiés par l’enquête sont les contraintes structurelles et le manque de formation. Le principal levier à développer semble être celui de la formation, aux soins palliatifs et à l’utilisation des différents outils crées pour contourner les contraintes structurelles.
Background: Advance directives towards end of life decisions are seldom used among Arabs.
Aims: This study aimed at investigating advance care preferences among a sample of Arab patients.
Method: This cross-sectional study was undertaken over the period March 2012-March 2013 on a sample of 300 patients with chronic illness in King Fahad National Guard Hospital, Riyadh, a major tertiary care hospital in Saudi Arabia.
Results: Mean age of patients in the study was 48.7 years (standard deviation 16.4). There were 104 patients on haemodialysis, 73 with advanced malignancy, 81 with chronic liver disease and 35 with chronic respiratory disease. More than 80% of the respondents felt that the physician should make the decision about cardiopulmonary resuscitation. Over 60% wished to remain at home when their condition deteriorated to impending death. There were no significant correlations between the patients' end of life decision preferences and religiosity, quality of life, disease duration, or other demographic characteristics.
Conclusion: Despite a significant lack of knowledge among our participants regarding resuscitation, a majority of patients with chronic illness were willing to discuss the options and were capable of making advance directive plans regarding their health status.