Advance Care Directives Research Articles

Increasing the uptake of advance care directives through staff education and one-on-one support for people facing end-of-life.

An advance care plan outlines a patient's wishes regarding medical treatment or goals of care in the case that they become unable to communicate or to make decisions. An advance care directive (ACD) is an advance care plan that has been formally recorded and has legal status. Despite ACDs playing an important role in person-centred end-of-life care, an earlier retrospective medical records audit demonstrated that only 11% (58/531) of people who died due to a terminal illness had an ACD.The aim of this project was to increase the proportion of patients with a terminal illness completing an ACD. A secondary outcome was to measure the impact of ACDs on hospital and intensive care unit (ICU) admissions in the last 6 months of life.This multifaceted project comprised (1) education for health professionals and the public; (2) individual support for patients on request; (3) development of online resources for health professionals and the general public; and (4) monthly team meetings. The proportion of ACDs completed and hospital and ICU admissions during the last 6 months of life, were extracted via medical record audits.Written consent was required for patients to participate, including being contacted by the project team and accessing their medical records. 112 patients consented to participate in the project and 109 (97%) completed an ACD. There was no reduction in the average number of hospital admissions, while ICU admissions reduced from 14% (n=74) to 0%. The targeted, multifaceted approach to education and support for completion of ACDs, resulted in a significant increase in ACD completion and a major reduction in ICU admissions.

Acknowledgement and use of advance care directives and goals of care by emergency department staff: a mixed method post intervention study.

Advance Care Planning (ACP) refers to a process that includes Advance Care Directives (ACD) and Goals of Care (GOC), a practice widely used for over three decades. Following the findings of an audit and a cross-sectional study in 2019 and 2021 respectively, we implemented several educational and other interventional strategies aimed at enhancing staff awareness and emphasizing the importance of recognizing and documenting of ACD/GOC. The aim of this study was to evaluate the acknowledgement and use of ACD and GOC by Emergency Department (ED) staff following these interventions. We used a mixed methods approach, incorporating both observational and cross-sectional designs with reflexive thematic analysis. Data extraction for the observational study took place between 1st April and 30th June 2023 focusing on a target population of randomly sampled adults aged ≥ 65 years. Demographics and other ACD and GOC related patients' clinical data were collected. Data collection for the cross-sectional study occurred between 19th July and 13th September 2023 targeting all ED staff. Information gathered included demographics, awareness about ACD and GOC, including storage location and implementation, as well as knowledge of Medical Treatment decision Makers (MTDM), a jurisdictional term identifying a person legally appointed to make healthcare decisions on behalf of someone who lacks decision-making capacity and other Victorian State legislative requirements were collected. In the observational period, 22,335 patients attended the ED and 19% (n = 6546) qualified for inclusion from which a sample of 308 patients were randomly extracted. We found ACD documents were noted in the medical records of 6.5% of the sample, fewer than 8% identified in our previous study. There was no correlation between ACD record availability and age (p = 0.054; CI ranging from - 0.065 to 7.768). The response rate for the cross-sectional survey was 12% (n = 340) in contrast to earlier study with 28% (n = 476) respondents. Staff knowledge and familiarity with ACD was 25% and GOC 45%. After implementing interventions in staff education and ACP awareness, we found that ACD documentation did not improve. However, GOC documentation increased in the context of heightened institutional awareness and integration into the Electronic Medical Records (EMR).

Early integration of palliative care and oncology (EIPCO): A low-maintenance, easy-to-implement program to address palliative care shortages in oncology.

192 Background: With demand for palliative care rising and increasing cancer survival rates, there is an urgent need to train future healthcare professionals in palliative care principles, especially for oncology. Prior work has focused on adding modules or rotations to medical school curriculums. However, this approach provides insufficient or late exposure to specific trainees, such as undergraduate and medical students that are less aware of palliative care. Here, we report on the successful development and implementation of a program that educates early trainees in palliative care and oncology topics while immediately benefiting patients and healthcare teams. Methods: The pilot version of the EIPCO (Early Integration of Palliative Care and Oncology) program was initiated at Stanford in 2021 by a single medical student and faculty advisor. Recruited medical, graduate, and undergraduate student trainees first complete an online, didactic course as a self-paced, safe introduction to palliative care and oncology. A member of EIPCO leadership (officer) then interviews trainees one-on-one to discuss course takeaways, remaining questions, and what follow-up opportunities are most relevant for each trainee. Next, EIPCO facilitates trainee boarding into their respective opportunities, such as shadowing, volunteering, talks, or research projects, to stimulate further learning and excitement. Involved trainees may then also apply to become officers. EIPCO was reliably maintained and expanded by a small team, even when all officers had significant time constraints. Results: EIPCO was received positively by trainees, especially for providing access to rare opportunities where they could directly help patients. Trainees reported the most interest in shadowing (88% of trainees, e.g. inpatient or at tumor boards), providing companionship (96% of trainees, e.g. spiritual care visits or for actively dying patients), and helping patients complete advanced care directives (85% of trainees). These experiences solidified crucial concepts and cultivated interest in palliative care and oncology. Resources have also been developed for the flexible implementation of EIPCO at other institutions. Conclusions: EIPCO serves as a low-maintenance and easy-to-implement model to address a growing need in medical education. EIPCO benefits healthcare teams and patients while exposing early trainees to how palliative and cancer care can be integrated. Further work has begun to expand the program to other institutions to enhance training on a broader scale.

Supporting decision-making for individuals living with dementia and their care partners with knowledge translation: an umbrella review.

Living with dementia requires decision-making about numerous topics including daily activities, such as advance care planning (ACP). Both individuals living with dementia and care partners require informed support for decision-making. We conducted an umbrella review to assess knowledge translation (KT) interventions supporting decision-making for individuals living with dementia and their informal care partners. Four databases were searched using 50 different search-terms, identifying 22 reviews presenting 32 KT interventions. The most common KT decision topic was ACP (N=21) which includes advanced care directives, feeding options, and placement in long-term care. The majority of KT interventions targeted care partners only (N=16), or both care partners and individuals living with dementia (N=13), with fewer interventions (N=3) targeting individuals living with dementia. Overall, our umbrella review offers insights into the beneficial impacts of KT interventions, such as increased knowledge and confidence, and decreased decisional conflicts.

Ethical case discussions before compulsory medication in psychiatry

Ethical case discussions in psychiatric hospitals are particularly useful when amoral conflict between respect for the patient's autonomy and well-being becomes apparent when considering the legitimacy of coercive treatment. To date, there is hardly any data on the procedure and the results of such case discussions. We therefore present data from alarge psychiatric clinic. We retrospectively analyzed ethical case discussions prior to compulsory medication in aquantitative and qualitative manner. The study analyzed the protocols of all ethical case discussions over a2-year period. They used the method of principle-based ethical case discussion. The qualitative analysis of selected cases was supplemented by reference to case records. An advance care directive was not available in any of the cases, so that the presumed will was used generally to assess the autonomy perspective. It proved quite complex to address danger to third parties when assessing the beneficence and nonmaleficence perspective. In 5 out of 35 consultations, the compulsory medication was not recommended from an ethical perspective. Ethical case discussions enable aholistic individual examination of moral obligations. They contribute to well-founded decisions and can help to reduce the frequency of coercive medications, suggesting routine use of ethics counselling.

Advance personal planning knowledge, attitudes, and participation amongst community-dwelling older people living in regional New South Wales, Australia: A cross-sectional survey.

Advance personal planning (APP) involves planning for future periods of incapacity, including making legal decisions and documents. APP ensures that a person's values and preferences are known and respected. This study aimed to examine knowledge of APP, attitudes and confidence towards APP, and participation in APP activities among older people residing in regional and rural areas. A cross-sectional survey was conducted with people aged over 65 years residing in and around regional towns in New South Wales, Australia. Participants responded to a social media advertisement or information provided through a community organisation. Data was collected via pen and paper survey or an online survey. The survey was developed for the study and included questions about the participant and their experiences with APP. Poisson regression modelling was conducted to explore the relationship between APP participation and APP knowledge, confidence and attitudes as well as the participant characteristics associated with APP participation. Overall, 216 people completed the survey. Most participants had a will (90%) but only a third (32%) had documented an advance care directive. Knowledge of APP was low with only 2.8% of participants correctly answering all 6 knowledge questions. Participants had a positive attitude towards APP and high level of confidence that they could discuss APP issues with important people in their life. Those with increased knowledge, confidence and attitude towards APP were significantly more likely to participate in APP activities. Older age and having private health insurance were significantly associated with engaging in APP activities. Increased frailty and the presence of health conditions were not associated with increased APP participation. There is a need to increase engagement with APP particularly among those who may be considered frail or have chronic health conditions. Increasing knowledge of, confidence and attitudes towards, APP could help to increase engagement in APP activities.

A cross-sectional study assessing concordance with advance care directives in a rural health district.

To measure compliance with Advance Care Directives (ACDs) for decedents in a rural setting. Observational, cross-sectional medical records audit comparing requests in ACDs with actual outcomes. Rural Australian coastal district. People who had an ACD, died during the study period (30 May 2020 to 15 December 2021) and participated in a local research project. Compliance was measured by comparing stated requests in the ACD with outcomes recorded in medical records. This included the place of death and a list of 'unacceptable interventions'. Sixty-eight people met the inclusion criteria (age range of 46-92 [mean 67 years; median 74 years]; 42 [62%] male). The main cause of death was cancer (n = 48; 71%). Preferred place of death was not stated in 16 ACDs. Compliance with documented preferred place of death was 63% (33/52): 48% (16/33) when the preferred place of death was home; 78% (7/9) when sub-acute was preferred; and 100% (10/10) when hospital was preferred. Compliance was 100% with 'unacceptable interventions'. These results demonstrate strong compliance with rural patients' requests in ACDs, particularly 'unacceptable interventions'. Home was the most common preferred place of death, but the compliance measure (48%) was the lowest in this study. This requires further exploration.

Using telehealth for people at the end of life with chronic illness in Australia.

Traditional models of palliative care have been tested by the challenges of caring for increasing numbers of people at the end stages of a chronic non-malignant illness. The COVID-19 pandemic and consequent reliance on telehealth services, has enabled the development of creative models of care. To improve home-based palliative care for people with chronic illness using telehealth, and this was demonstrated using quality-of-life measures. A total of 35 non-cancer referrals to a community palliative care service were recommended for the pilot project, with one specialist palliative care nurse as their contact. All were offered a telehealth service with a specially designed app to self-monitor their symptoms, a session on advance care directives, and self-rated quality-of-life measures using the RAND 36-Item Health Survey (Version 1.0), consisting of 36 items that cover nine domains. Statistical analysis was performed using SPSS software. Over the 21 months of the pilot study, 13 people chose to participate in the pilot. For participants, telehealth meant more control over their symptoms, fewer emergency presentations and appointment travel time was alleviated. Quality-of-life surveys highlighted physical impairments, which did not change over time. This pilot programme demonstrated an innovative approach to addressing the demands of people dying of chronic illness, with further work required to explore the place of telehealth consultations in the overall healthcare system.

“The clock is ticking”: (dis)orientations to ageing and end-of-life care in advanced capitalism and care directives

This article engages Italian migrant experiences and enactments of futurity to problematize neoliberal anticipatory approaches to ageing and care. Stepping beyond the focus on atomized and agentic individuals and a singular imagined future defined by notions of advancement and progress, sistemazione (home, future, and security) offers ways of building alternative and relational futures within times and spaces of shared precarity. We draw on ethnographic fieldwork and interviews with Italian migrant families living in Adelaide, and a critical analysis of objects as “orienting devices,” to consider how a family heirloom, a 26-face handmade Italian clock made from the physical remnants of World War II, offers new ways of imagining care within spaces of ruin.

Use of the supportive and palliative care indicators tool (SPICT™) for end-of-life discussions: a scoping review

BackgroundIn order to mitigate the distress associated with life limiting conditions it is essential for all health professionals not just palliative care specialists to identify people with deteriorating health and unmet palliative care needs and to plan care. The SPICT™ tool was designed to assist with this.AimThe aim was to examine the impact of the SPICT™ on advance care planning conversations and the extent of its use in advance care planning for adults with chronic life-limiting illness.MethodsIn this scoping review records published between 2010 and 2024 reporting the use of the SPICT™, were included unless the study aim was to evaluate the tool for prognostication purposes. Databases searched were EBSCO Medline, PubMed, EBSCO CINAHL, APA Psych Info, ProQuest One Theses and Dissertations Global.ResultsFrom the search results 26 records were reviewed, including two systematic review, two theses and 22 primary research studies. Much of the research was derived from primary care settings. There was evidence that the SPICT™ assists conversations about advance care planning specifically discussion and documentation of advance care directives, resuscitation plans and preferred place of death. The SPICT™ is available in at least eight languages (many versions have been validated) and used in many countries.ConclusionsUse of the SPICT™ appears to assist advance care planning. It has yet to be widely used in acute care settings and has had limited use in countries beyond Europe. There is a need for further research to validate the tool in different languages.

Bystander cardiopulmonary resuscitation differences by sex – The role of arrest recognition

PurposeTo assess whether bystander cardiopulmonary resuscitation (CPR) differed by patient sex among bystander-witnessed out-of-hospital cardiac arrests (OHCA). MethodsThis study is a retrospective analysis of paramedic-attended OHCA in New South Wales (NSW) between January 2017 to December 2019 (restricted to bystander-witnessed cases). Exclusions included OHCA in aged care, medical facilities, with advance care directives, from non-medical causes. Multivariate logistic regression examined the association of patient sex with bystander CPR. Secondary outcomes were OHCA recognition, bystander AED application, initial shockable rhythm, and survival outcomes. ResultsOf 4,491cases, females were less likely to receive bystander CPR in private residential (Adjusted Odds ratio [AOR]: 0.82, 95%CI: 0.70–0.95) and public locations (AOR: 0.58, 95%CI:0.39–0.88). OHCA recognition during the emergency call was lower for females arresting in public locations (84.6% vs 91.6%, p = 0.002) and this partially explained the association of sex with bystander CPR (∼44%). This difference in recognition was not observed in private residential locations (p = 0.2). Bystander AED use was lower for females (4.8% vs 9.6%, p < 0.001); however, after adjustment for location and other covariates, this relationship was no longer significant (AOR: 0.83, 95%CI: 0.60–1.12). Females were less likely to be in an initial shockable rhythm (AOR: 0.52, 95%CI: 0.44–0.61), but more likely to survive the event (AOR: 1.34, 95%CI: 1.15–1.56). There was no sex difference in survival to hospital discharge (AOR: 0.96, 95%CI: 0.77–1.19). ConclusionOHCA recognition and bystander CPR differ by patient sex in NSW. Research is needed to understand why this difference occurs and to raise public awareness of this issue.

Attitudes of the Portuguese population towards advance directives: an online survey

BackgroundAdvance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people’s attitudes towards ADs.MethodsAn online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a –form—which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale—was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023.ResultsA total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence.ConclusionThe results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens’ autonomy in end-of-life care planning.

Conscientious objection to enforcing living wills: A conflict between beneficence and autonomy and a solution from Indian philosophy

Living wills document how patients wish to be treated in the event of becoming incompetent to make their medical decisions. Living wills are legally enforceable in India, nonetheless, doctors can claim conscientious objection to implementing any aspect of such directives; however, the buck stops with the hospital to ensure that the patient’s wishes are carried out. In enforcing advance care directives, beneficence and autonomy usually come into conflict. In a paternalistic model of medicine, beneficence and nonmaleficence take precedence over autonomy, and there is a danger that the patient’s wishes are ignored. Even if a physician is not trained to give equal importance to autonomy, beneficence, and nonmaleficence, they can rationalize the enforcement of an advance care directive under the principle of nonmaleficence rather than under autonomy. The ethical principles of ahimsa—the principle of not being the cause of physical or mental injury of others—and raja dharma—the principle where a person in a position of power puts the wishes of the person whom they have power over ahead of their own wishes—which are derived from Hindu, Buddhist, and Jain philosophical traditions, can help physicians who practice Indic faiths resolve their moral dilemma when faced with a possibility of enforcing a patient’s wishes that are not in line with their personal views. Such moralizing is especially important during public health emergencies when a patient may not be able to transfer to the care of another doctor who does not have an objection to enforcing their living will.

To Plan or Not to Plan? Experiences and Challenges of Older Swiss Adults Facing End-of-Life Decisions.

End-of-life (EoL) planning and the drafting of advance care directives (ACD) are challenging for older adults. As part of a mixed study, the content of 18 semi-structured interviews with Swiss community-dwelling older adults was analyzed to investigate contextual and interactional aspects that might influence their choice to complete ACD. Results show that EoL planning vary greatly. Three types of planners were highlighted: the solo planners, the collaborative planners, and the delegators. Each represents a specific way of conceiving autonomy, the usefulness of ACD and of involving third parties in the decision-making process. Whereas for solo planners, ACD is a personal, rational affair, for collaborative planners and delegators, reflection and decisions on EoL issues are interactional and iterative processes. The results suggest that health and social care professionals would benefit from taking into consideration the various types of planning, in order to provide the best support to older adults for ACD completion.

'Can a relative override a patient's Advance Care Directive?': end-of-life legal worries of general practitioners and nurses working in aged care.

This paper aimed to describe the legal worries of Australian general practitioners (GPs) and nurses regarding end-of-life care provided in the aged care setting. An analysis of responses to the final, open-ended question of a cross-sectional online survey of GPs and nurses practising in aged care settings in Queensland, New South Wales and Victoria was undertaken. Of the 162 GPs and 61 nurses who gave valid responses to the survey, 92% (151 GPs and 55 nurses) responded to the open-ended question. Participants identified concerns across all relevant areas of end-of-life law. The most common concerns were substitute decision-makers or family member(s) wanting to overrule an Advance Care Directive, requests for futile or non-beneficial treatment and conflict about end-of-life decision-making. Participants often also identified concerns about their lack of legal knowledge and their fear of law or risk related to both end-of-life care generally and providing medication that may hasten death. Australian GPs and nurses working in aged care have broad-ranging legal concerns about providing end-of-life care. Legal concerns and knowledge gaps identified here highlight priority areas for future training of the aged care workforce.

“They choke to death in front of your very eyes”: nurses’ lived experiences and perspectives on end-of-life care during COVID-19

BackgroundThe COVID-19 pandemic led to an intensified fear and threat of dying, combined with dying and grieving in isolation, in turn significantly impacting nursing in end-of-life situations. The study aims (1) to understand the lived experiences of nurses who provided care to end-of-life patients during COVID-19; and (2) to explore whether providing care under such circumstances altered the perspectives of these nurses regarding end-of-life care.MethodsApplying the phenomenological-interpretive qualitative approach, 34 in-depth semi-structured interviews were conducted between March 2020-May 2021 with nurses from eight hospitals in Israel who were recruited through purposive and snowball sampling. Thematic analysis was applied to identify major themes from the interviews.ResultsFive main themes emerged from the analysis, including: (1) a different death; (2) difficulties in caring for the body after death; (3) the need for family at end-of-life; (4) weaker enforcement of advance care directives; and (5) prolonging the dying process.DiscussionDuring the pandemic, nurses encountered numerous cases of death and dying, while facing ethical and professional issues regarding end-of-life care. They were required to administer more aggressive care than usual and even necessary, leading to their increased moral distress. The nurses’ ethical concerns were also triggered by the requirement to wrap the corpse in black garbage-like bags to prevent contagion, which they felt was abusing the dead. The findings also demonstrate how family presence at end-of-life is important for the nursing staff as well as the patient. Finally, end-of-life situations during the pandemic in Israel were managed in an individual and personal manner, rather than as a collective mission, as seen in other countries.ConclusionsThe study offers insights into the nurses’ attitudes towards death, dying, and end-of-life care. An emphasis should be placed on the key elements that emerged in this study, to assist nurses in overcoming these difficulties during and after medical crises, to enhance end-of-life care and professionalism and decrease burnout.

What care do people with dementia receive at the end of life? Lessons from a retrospective clinical audit of deaths in hospital and other settings

BackgroundThe need for better end-of-life care for people with dementia has been acknowledged. Existing literature suggests that people dying with dementia have less access to palliative care, yet little is known about the care provided to people with dementia at the end of life. This study aimed to establish evidence related to end-of-life care for people dying with dementia in hospital compared to other settings.MethodsA retrospective clinical audit of people who had a diagnosis of dementia and had accessed services within a local health district, who died between 2015 and 2019, was conducted. A total of 705 people were identified, and a subset of 299 people randomly selected for manual audit. Chi-square p-values were used to compare the place of death, and a t-test or non-parametric test was used to assess the significance of the difference, as appropriate. Measures of functional decline within one month of death were assessed using mixed effects logistic regression models.ResultsThe characteristics of people differed by place of death, with people who died in hospital more likely to be living at home and to not have a spouse. Less than 1 in 5 people had advance care directives or plans. Many were still being actively treated at the time of death: almost half of people who died in hospital had an investigation in their final 72 hours, less than half of people were coded as receiving palliative care at death, and more than 2 in 3 people did not get access to specialist palliative care. Declining function was associated with the terminal phase.ConclusionThis study provides novel insights for those providing end-of-life care for people with dementia. Healthcare professionals and policy makers should consider how demographic characteristics relate to the places people with dementia receive end-of-life care. The care provided to people with dementia in the last year of their life highlights the need for more support to prepare advance care documentation and timely consideration for palliative care. Changes in markers of nutritional status and function in people with advanced dementia may help with identification of terminal phases.

A Palliative Care Approach to Amyotrophic Lateral Sclerosis.

Amyotrophic lateral sclerosis (ALS) is a degenerative disease characterized by motor dysfunction. Currently, treatment options are limited and management is based mostly on symptom control and quality of life optimization, so palliative care plays a fundamental role. Our objective was to characterize the ALS population in Madeira Island that was referenced and/or followed by a palliative care unit over a five-year period. Longitudinal, retrospective, descriptive, and observational study to analyze patients with ALS who were referred and/or followed by a palliative care unit during a five-year period, between 2017 and 2021. Patient's medical electronic and physical records were analyzed to gather data. Descriptive and inferential statistical analysis was done using Microsoft Excel and Statistical Package for the Social Sciences (version 28.0.1). During this five-year period, a total of 38 patients were diagnosed with ALS in Madeira Island and23 (60.53%) were referred to palliative care. Three patients died before assessment, so 20 (50.63%) were followed by the palliative care team. They had a median life expectancy of 425 days and the median time spent in palliative care was 137 days. Of this population, 56.52% (n=13) was male with an average age of 64 years. The median period from diagnosis to referral was 167 days, with most referrals being made by family medicine (39.13%; n=9) motivated by uncontrolled symptoms (95.65%; n=22).The median period from referral to first assessment by a palliative care physician was 19 days. The Palliative Performance Scale (PPS) and Confusion Assessment Method (CAM) applied on the first visit had a median score of 40% in the former and was negative in 95.00% (n=19) of patients in the latter. Advanced care directives were present in 55.00% (n=11) of patients and all provided care was in accordance with the patient's wishes. The most common symptoms were dysphagia, dyspnea, pain, anxiety, and sialorrhea. The most used drugs were morphine, riluzole, butylscopolamine, bisacodyl, and midazolam. As for other interventions, 55.00% (n=11) of patients underwent noninvasive ventilation (NIV), 15.00% (n=3) were submitted to percutaneous endoscopic gastrostomy (PEG), and one patient (5.00%) was nasogastrically intubated. The death rate was 95.00% (n=19) with 73.68% (n=14) of deaths occurring in the palliative care unit. Literature has shown that there are many advantages to the early inclusion of palliative care in ALS management, achieving effective symptom control and greater quality of life, but also reducing caregiver burden. However, in this study, we found that referrals to palliative care were late and included mostly cases of advanced disease with uncontrolled symptoms.

Advance Care Planning in Patients with Suspected or Proven COVID: Are We Meeting Our Own Standards?

Given the importance of advance care planning (ACP) in the context of a pandemic, we aimed to assess current adherence to local policy recommending ACP in all hospitalised adult patients with suspected or proven COVID-19 at Liverpool Hospital, Sydney, Australia. A retrospective cohort study. A tertiary referral and teaching hospital. A select sample of adult patients admitted to Liverpool Hospital in 2019-2021 with suspected or proven COVID-19. Proportion of patients with documented ACP and format of ACP. Amongst 209 patients with proven or suspected COVID-19 hospitalised between March 2019 through to September 2021, median frailty score was 3, the median Charlson Comorbidity Score was 4, median age of the patients was 71years, and median length of hospital stay was 5days (range 0-98 days). Almost all patients were tested for COVID-19 (n = 207, 99%) of which 15% (31) were positive. Fewer than a quarter of the patients had documented ACPs (50, 24%) and 17 patients had existing formal advance care directives. Patients who had ACP were older, more likely to be frail and more likely to have higher rates of comorbidity compared to those without ACP. ACP was more commonly discussed with family members (41/50) than patients (25/50) and others (5/50). Adherence to the local ACP policy mandating such discussions was low. This reinforces the need for prioritising ACP discussions, especially for unwell patients such as those with COVID, likely involving further input to improve awareness and rates of formal documentation.

Advance Care Directives: A Herzl Clinic Quality Improvement Project on Patients' perspectives

Background: Advance Care Planning (ACP) has benefits for patients and is often optimal when done in the primary care setting. Despite the development of multiple resources and tools to support ACP discussions at our Family Medicine Teaching Clinic, the initiation and documentation of Advance Care Directives (ACD) in patients’ medical files were low and resident physicians had perceived that patients were unwilling or unprepared for ACP discussions. The goal of this project was to understand the challenges and barriers that patients and their caregivers face in initiating and discussing ACD with their primary care team.&#x0D; Methods:&#x0D; An online survey was conducted among 78 patients who are part of the Home Care program at the Herzl clinic. Participants were asked about the value placed on ACP and their preferences on various aspects surrounding the initiation of ACD discussions.&#x0D; Results:&#x0D; 25 of 78 possible responses were received. This included survey responses from 6 patients, 13 caregivers, 4 family members and 2 physicians. Our results show that patients and their caregivers value Advance Care Planning discussions (&gt;80%). Additionally, they endorse multiple benefits of ACP for themselves, their care teams and families. Patients and caregivers prefer that medical professionals initiate and facilitate the discussions (70-80%) and are open to receive educational material to prepare for these discussions (68%).&#x0D; Conclusion: Patients in a frail population are willing and open to discuss advance care planning with their primary care team. Family Medicine teaching clinics can support patients’ desire to engage in ACP by providing access to education material and initiating these discussions.