Planning for Serious Illness by the General Public: A Population-Based Survey

Background. While rates of advance care documentation amongst the general public remain low, there is increasing recognition of the value of informal planning to address patient preferences in serious illness. Objectives. To determine the associations between personal attributes and formal and informal planning for serious illness across age groups. Methods. This population-based, online survey was conducted in Saskatchewan, Canada, in April, 2012, using a nonclinical sample of 827 adults ranging from 18 to 88 years of age and representative of age, sex, and regional distribution of the province. Associations between key predictor variables and planning for serious illness were assessed using binary logistic regression. Results. While 16.6% of respondents had completed a written living will or advance care plan, half reported having conversations about their treatment wishes or states of health in which they would find it unacceptable to live. Lawyers were the most frequently cited source of assistance for those who had prepared advance care plans. Personal experiences with funeral planning significantly increased the likelihood of activities designed to plan for serious illness. Conclusions. Strategies designed to increase the rate of planning for future serious illness amongst the general public must account for personal readiness.

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Implementation of 4M Age-Friendly Care in Arkansas Rural Primary Care Clinics Led to Improved Advance Care Planning

Innovation in Aging ◽

10.1093/geroni/igab046.3011 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 827-828

Author(s):

Leah Tobey ◽

Robin McAtee

Keyword(s):

Older Adults ◽

Primary Care ◽

The United States ◽

Living Will ◽

Care Plan ◽

Educational Training ◽

Care Plans ◽

Advance Care ◽

Main Components ◽

What Matters

Abstract The 4Ms Age-Friendly Framework has been introduced and implemented into nearly 2,000 primary care practices across the United States by Geriatric Workforce Enhancement Program’s (GWEP) educational efforts. The AR Geriatric Education Collaborative, the GWEP in Arkansas, has provided monthly trainings to a rural federally qualified healthcare clinic system and educated clinicians about how to complete a Medicare Annual Wellness Visit (AWV) that was inclusive of an advance care plan. Specific educational training including the two main components of an ACP: living will preferences and medical power of attorney were reviewed as their role into “What Matters” was explained. Before 4Ms Age Friendly training, baseline data showed only 7% of older adults (OAs) had an established ACP in site 1 and 33% in site 2. After training, the rate of ACP rose to 47% in site 1 and 59% in site 2. During the training, not only were the two main components reviewed but case studies were provided about what questions to ask surrounding the “What Matters” question as a guide to further discuss an OAs wishes, priorities and end-of-life care. This project demonstrated that implementation of 4Ms Age-Friendly Care not only improves the completion of advance care plans but also further enhances the overall care of the older adult when “what matters” most to the older adults is known and communicated.

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Treatment choice when faced with high risk of poor outcome – and response to decisions made by surrogates on their behalf

Medical Research Archives ◽

10.18103/mra.v8i11.2277 ◽

2020 ◽

Vol 8 (11) ◽

Author(s):

Charlie Corke ◽

Stella-May Gwini ◽

Sharyn Milnes ◽

Ben Jong ◽

Neil Orford

Keyword(s):

Online Survey ◽

Treatment Choice ◽

Decision Makers ◽

Care Plan ◽

Poor Outcome ◽

Advance Care Plan ◽

Hypothetical Scenario ◽

Surrogate Decision Makers ◽

Advance Care ◽

Surrogate Decision

Faced with a high likelihood of poor outcome treatment choice is difficult and few people are certain about what they would, or would not, want. Recognising this we sought to explore how individuals react to hypothetical choices made on their behalf by surrogate decision-makers. We used an online survey, using a hypothetical scenario involving a 95% chance of poor outcome and 5% chance of good outcome. There were 510 participants. Most (63%) expressed uncertainty regarding preference for treatment. 37% expressed certainty (12% certainly wanting treatment and 25% certainly not wanting treatment). Seventy seven percent indicated they would be understanding or pleased if the surrogate chose to treat, while 92% were understanding or pleased with a decision not to treat by a surrogate decision maker. Patients who had expressed ‘certain’ wishes when presented with the scenario (either certainly wanting or certainly not wanting treatment) were more likely to be angry/upset when surrogates made the opposite decision. Those who had completed an Advance Care Plan (ACP) were more likely to be angry/upset when these wishes were not followed. This finding suggests it may be unrealistic to expect surrogate decision-makers to identify ‘what the patient would want’ as a binary choice between consenting to treatment or refusing treatment when chances are poor and the decision is difficult. Asking surrogates to identify choices that they believe would be likely to make the person angry or upset might be more appropriate and more effective. Most people were understanding of decisions made by surrogates (whether these matched their preference or not). This finding should be used to reassure surrogates who are required to make difficult decisions. Additionally, factors associated with patient upset/anger at surrogate treatment decisions were identified. This most commonly included those patients who had documented wishes in an Advance Care Plan that was not followed.

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Promoting patient health maintenance with cancer care planning at diagnosis and during treatment: baseline data of the Coleman Supportive Oncology Collaborative (CSOC).

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.e24051 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. e24051-e24051

Author(s):

Christine B. Weldon ◽

Julia Rachel Trosman ◽

Rosa Berardi ◽

Al Bowen Benson ◽

Betty Roggenkamp ◽

...

Keyword(s):

Patient Care ◽

Cancer Care ◽

Online Survey ◽

Care Plan ◽

Care Planning ◽

Health Maintenance ◽

Supportive Cancer Care ◽

Personalized Care ◽

Care Plans ◽

The Impact

e24051 Background: CSOC conducts quality improvements (QI) for cancer patients that facilitate delivery of appropriate health maintenance and supportive cancer care at diagnosis and during treatment. CSOC is implementing a care planning QI starting at diagnosis using the 4R oncology model (Right Info / Care / Patient / Time), which provides patients a formal personalized care plan called Patient Care Sequence. Each Care Sequence includes health maintenance, cancer treatments and supportive care. As part of CSOC, we conducted provider surveys as a pre-intervention baseline to inform QI opportunities. Methods: Online survey of cancer providers from 8 cancer centers (4 academic, 4 community) conducted July 2018 - October 2019, prior to 4R implementation. The survey focused on current care planning practices and inclusion of guideline recommended health maintenance in care plans. Results: Survey response rate: 80% (180/225); respondents were 53% physicians, 20% advanced practice, 27% nurses. Only 59% (107/180) of respondents give patients care plans at diagnosis: 61% (65/107) verbally, 22% (24/107) written, 17% (18/107) using a printed form. Providers reported considerable gaps in including guideline-based health maintenance and promotion activities in care plans given to patients (Table). Additionally, 61% of providers reported concerns that it is challenging for their patients to manage their own health maintenance activities. Providers who are concerned about patients’ challenges in managing their own health maintenance are significantly more likely to give their patients a written or printed plan (76%, 32/42) compared to those providing care plans to patients verbally or not at all (56%, 77/138), p = .02. Conclusions: Guideline based health promotion activities are not consistently included in care plans, and care planning is not sufficiently conducted at cancer diagnosis. The CSOC 4R Oncology Model, which implements Patient Care Sequences at diagnosis, will address these gaps and examine the impact of formal care planning on improving utilization of health maintenance and promotion activities. [Table: see text]

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Making the Informal Formal: Discussing and Completing Advance Care Plans in Care Dyads with Cognitive Impairment

Journal of Palliative Care ◽

10.1177/08258597211063047 ◽

2021 ◽

pp. 082585972110630

Author(s):

Megan Shepherd-Banigan ◽

Cassie B. Ford ◽

Nicole DePasquale ◽

Valerie A. Smith ◽

Emmanuelle Belanger ◽

...

Keyword(s):

Health Care ◽

Cognitive Impairment ◽

Health Care Providers ◽

Living Will ◽

Care Providers ◽

Positive Role ◽

Cross Sectional ◽

Care Plans ◽

Care Partners ◽

Advance Care

Background Discussing advance care planning (ACP) with care partners may be a steppingstone to the completion of advance directives (ADs) for persons with cognitive impairment (PwCIs). Objectives To examine whether PwCI-reported occurrence of and PwCI-care partner agreement about ACP discussions are associated with completion of ADs. Design and Subjects We conducted a secondary, cross-sectional analysis of data from 1672 PwCI-care partner dyads in the BLINDED study. PwCIs were Medicare beneficiaries in the US, aged >65 years, and diagnosed with mild cognitive impairment or dementia. Care partners were identified by PwCIs as being most involved in their health care. Measurements PwCIs’ completion of ADs was determined by 1 or more affirmative responses to dichotomous indicators for formalizing a living will, medical directive, or durable power of attorney for health care. Discussion occurrence was based on PwCI reports and agreement between PwCI and care partner reports of prior conversations about PwCIs’ ACP preferences between PwCIs and care partners. Results In logistic regression models adjusted for PwCI and care partner characteristics, PwCIs who had (vs. had not) discussed ACP were 10% more likely to complete ADs. PwCIs from dyads agreeing (vs. disagreeing) a discussion occurred were 7% more likely to complete ADs. PwCIs from care dyads in agreement (vs. disagreement) about non-discussion were 11% less likely to formalize ADs. Conclusions Discussing ACP with care partners plays a direct, positive role in completing ADs among PwCIs. Health care providers who approach ACP as a dyadic, communicative decision-making process from the outset may facilitate PwCIs’ uptake of ADs.

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General public Knowledge of coronavirus disease 2019 (COVID-19) at early stages of the pandemic: results of a random online survey in the Kingdom of Saudi Arabia

10.21203/rs.3.rs-54864/v1 ◽

2020 ◽

Author(s):

Ali Alqahtani ◽

V Krishnaraju ◽

Mona Alqarni ◽

Mohammed Al-Sheikh Hassan

Keyword(s):

Saudi Arabia ◽

General Public ◽

Online Survey ◽

Age Groups ◽

World Health ◽

Public Knowledge ◽

General Knowledge ◽

Cross Sectional ◽

Early Stages ◽

Knowledge Levels

Abstract AbstractBackground: A novel coronavirus was identified at the end of 2019 in Wuhan City, China. Later, the World Health Organization (WHO) named the disease caused by the virus coronavirus disease 2019 (COVID-19) and declared a pandemic in March 2020. Saudi and global health agencies have provided various COVID-19 knowledge tools and facts to the general public. Therefore, this study aims to assess COVID-19 knowledge among the general public in Saudi Arabia at the early stages of the pandemic, including knowledge of prevention practices, home quarantine measures, and compliance with governmental restrictions.Subjects and methods: A cross-sectional study was conducted in March 2020 during the COVID-19 pandemic in Saudi Arabia. The study included 1006 participants who responded to a random online COVID-19 public knowledge questionnaire that included five sections: demographic characteristics, general knowledge, prevention practices, home quarantine measures, and knowledge of governmental restrictions. Data were collected from a random sample recruited through the circulation of the questionnaire on social media platforms and were then analysed by descriptive statistical methods. Three levels of knowledge were established: excellent, intermediate, and poor. Differences in the percentages of participants with different knowledge levels by the demographic variables were analysed using the chi-square test.Results: Regarding overall general knowledge of COVID-19, 75%, 24%, and 1% of the participants had excellent, intermediate, and poor knowledge levels, respectively. Knowledge levels were significantly different by nationality and age (P=0.027 and 0.008, respectively). The majority of participants (98.4%) reported excellent knowledge of prevention practices, with no statistically significant differences among groups (P>0.005). Older age groups reported higher knowledge of home quarantine measures (86.6% and 86.4% of the 51-60 and older than 60 age groups, respectively, P=0.001). Approximately 50% of Saudis reported excellent knowledge of the restrictions imposed by the Saudi government to control the spread of COVID-19, while approximately 45% of non-Saudis had an excellent level of knowledge (P= 0.009).Conclusion and recommendations: High levels of knowledge about the virus, including prevention practices, are essential. The provision of COVID-19 facts and knowledge tools should be focused on younger generations to enhance compliance with the governmental restrictions required to stop the spread of COVID-19.

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52 A Community Cure for Frequent Reattenders: Developing An Interface Geriatrics Service

Age and Ageing ◽

10.1093/ageing/afz186.06 ◽

2020 ◽

Vol 49 (Supplement_1) ◽

pp. i14-i17

Author(s):

O Davies ◽

S James

Keyword(s):

Social Services ◽

Advance Care Planning ◽

Care Plan ◽

Care Planning ◽

Care Plans ◽

Frequent Attenders ◽

Frequent Attender ◽

Frail Patients ◽

Complex Patients ◽

Advance Care

Abstract Topic Setting up an interface geriatrics service in a seaside area with a large elderly population. Many elderly patients are readmitted due to the challenge of managing their chronic health conditions in the community. These patients are frail, with frequently exacerbated chronic conditions causing regular readmissions. We noted that treatment was rarely changed during these admissions and patients were not uniformly managed. Aims Aims for this project were to improve care for older people, reduce readmissions and produce clear patient care plans. Interventions Our first PDSA cycle involved implementing geriatrician presence at community MDTs (involving social services, GPs, intermediate care teams, and various others). This generated home visits to several patients, with a mix of acute and chronic issues. We offered Advance Care planning where appropriate to these patients. We noted several patients were repeatedly discussed at MDT. This brought into focus frequent attenders who were usually well-known to the community. In the next cycle we introduced ‘frequent attender’ plans for these patients, ensuring a unified approach to their management. Subsequent cycles involved geriatrician presence at the ‘frequent attenders’ steering group, and further links with community teams. Our primary intervention has been Advance care & frequent attender plans offering tailored management for complex patients. These are completed by a geriatrician discussing patients wishes for treatment and future care. Improvements Readmission rates show up to 90% reduction in admissions/ED attendances for patients following care plan implementation. Feedback from families and patients is positive – the service is ‘pragmatic and supportive’, delivering ‘empathetic care’. Discussion Implementing an interface geriatrics service highlights the importance of caring for frail patients in their preferred place of care, reducing unnecessary/inappropriate hospitalisations. Geriatrician presence at community MDTs has improved care by offering prompt access to medical advice and review of complex patients. It highlights patients presenting frequently to services, allowing us to work with patients and families to improve management. A frequent attender list generated by the hospital helps target patients for whom intervention will give significant benefit. We plan to extend this further by working with nursing homes that have high conveyancing rates. The service is being extended to more areas within our region, and we are working with GPs and care homes to further offer advance care planning to vulnerable and frail patients.

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Normalising advance care planning in a general medicine service of a tertiary hospital: an exploratory study

Australian Health Review ◽

10.1071/ah15068 ◽

2016 ◽

Vol 40 (4) ◽

pp. 391 ◽

Cited By ~ 13

Author(s):

Ian A. Scott ◽

Nalaka Rajakaruna ◽

Darshan Shah ◽

Leyton Miller ◽

Elizabeth Reymond ◽

...

Keyword(s):

Advance Care Planning ◽

General Medicine ◽

Tertiary Hospital ◽

Care Plan ◽

Care Planning ◽

Care Plans ◽

Medicine Service ◽

Advance Care Plan ◽

Advance Care ◽

Program Components

Objective The aim of the present study was to develop, implement and explore the effects of a program in advance care planning (ACP) within a tertiary hospital general medicine service. Methods Before–after exploratory mixed-methods analysis was conducted of an ACP program comprising seven components designed to overcome well-documented barriers to ACP in clinical practice. The results of pre-ACP program audits performed in June 2014 were compared with those of post-ACP audits performed over 5 months from July to November 2014. The main outcome measure was the number of advance care plans completed in patients considered eligible for ACP based on a life expectancy of 12 months or less as assessed by two prognostication instruments. Questionnaire surveys ascertained staff perceptions of ACP and the usefulness of training and resources in ACP. Results Pre-ACP program analysis of 166 consecutive patients deemed eligible for ACP revealed that only 1% had a documented advance care plan. Following ACP implementation, 115 of 215 (53%) potentially eligible patients were considered able to participate in ACP discussions and were approached to do so before discharge, of whom 89 (77.4%) completed an advance care plan, whereas 26 (23.6%) declined. This equated to an overall completion rate for all potentially eligible patients of 41% compared to 1% pre-ACP (P < 0.001). Major barriers to ACP perceived by at least 30% of questionnaire respondents included the reluctance of patients and family to discuss ACP, insufficient time to initiate or complete ACP, patient and/or family factors that rendered ACP impractical, inadequate communication skills around end-of-life issues, confusion about who was primarily responsible for conducting ACP and difficulty using ACP documentation forms. Enabling factors included dedicated ACP workshops, facilitator and resource packages for staff, and ACP brochures for patients and family. Conclusion A multifaceted ACP program in a general medicine service led to completion of an advance care plan in more than three of four patients considered eligible for, and who participated in, ACP. However, although program components were tailored to overcome known barriers to ACP, staff indicated ongoing difficulties, with less than half of ACP-eligible patients completing advance care plans. What is known about this topic? Advance care planning is increasingly recognised as an important part of hospital care for older patients with advanced chronic disease. However, research indicates that ACP discussions are rare in hospital settings because of various barriers that are not adequately addressed in the design of ACP programs. What does this paper add? The present exploratory study of the development, implementation and evaluation of an ACP program in a tertiary hospital general medicine service shows that program components designed to overcome specific barriers to ACP discussions was associated with a >75% completion rate of advance care plans among ACP-eligible patients who participated in ACP discussions. Dedicated staff training and resources in ACP, employment of an ACP facilitator and ready access to ACP documentation forms were important enabling strategies. What are the implications for practitioners? Hospital units caring for significant numbers of older patients with limited life expectancy can implement ACP programs that help normalise ACP discussions within routine clinical care.

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Older Adults More Likely to Discuss Advance Care Plans With an Attorney Than With a Physician

Gerontology and Geriatric Medicine ◽

10.1177/2333721417741978 ◽

2017 ◽

Vol 3 ◽

pp. 233372141774197 ◽

Cited By ~ 1

Author(s):

Mercedes Bern-Klug ◽

Elizabeth A. Byram

Keyword(s):

Older Adults ◽

Health Care ◽

Decision Maker ◽

Online Survey ◽

Medical Decision ◽

Surrogate Decision Maker ◽

Future Health ◽

Care Plans ◽

Advance Care ◽

Surrogate Decision

Adults are encouraged to discuss their end-of-life health care preferences so that their wishes will be known and hopefully honored. The purpose of this study was to determine with whom older adults had communicated their future health care wishes and the extent to which respondents themselves were serving as a surrogate decision maker. Results from the cross-sectional online survey with 294 persons aged 50 and older reveal that among the married, over 80% had a discussion with their spouse and among those with an adult child, close to two thirds (64%) had. Over a third had discussed preferences with an attorney and 23% with a physician. Close to half were currently serving as a surrogate decision maker or had been asked to and had signed papers to formalize their role. 18% did not think that they were a surrogate but were not sure. More education is needed to emphasize the importance of advance care planning with a medical professional, especially for patients with advanced chronic illness. More education and research about the role of surrogate medical decision makers is called for.

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Communication of advance care planning decisions: a retrospective cohort study of documents in general practice

10.21203/rs.2.24056/v2 ◽

2020 ◽

Author(s):

Laura Panozzo ◽

Pam Harvey ◽

Meagan-Jane Adams ◽

Dennis O'Connor ◽

Bernadette Ward

Keyword(s):

General Practice ◽

End Of Life Care ◽

Retrospective Cohort ◽

Care Plan ◽

Life Care ◽

Hospital Records ◽

Care Plans ◽

Advance Care Plan ◽

Advance Care ◽

Enduring Power

Abstract Background Doctors, particularly general practitioners, play a significant role in assisting patients to create advance care plans. When medically indicated, these documents are important tools to promote congruence between end-of-life care and patient’s personal preferences. Despite this, little is known regarding the availability of these documents in hospitals. The aim of this study was to identify the proportion of people who died in hospital without an advance care plan and how many of these had advance care planning (ACP) documents in their general practice records.Methods A retrospective cohort study was conducted of patient hospital records with manual linkage to general practice records. The large regional hospital in Victoria, Australia has a catchment population in excess of 300,000 people. The study sample was patients aged 75 years and over who died in the hospital between 1 January 2016 and 31 December 2017. The hospital records of these patients were examined to identify those which did not have a system alert for ACP documents on the file. Alerted ACP documents were limited to those legislated in the state of Victoria: advance care plan, Enduring Power of Attorney (Medical Treatment) or Enduring Power of Guardianship. Where no ACP document system alert was found in the hospital record, the patient’s nominated general practice was consented to participate and the corresponding general practice record was examined. Data were analysed using descriptive statistics.Results Of the 406 patients who died in hospital, 76.1% (309) did not have a system alert for any ACP document. Of the 309 hospital records without a system alert, 144 (46.7%) corresponding general practice records were examined. Of these, 14.6% included at least one ACP document, including four advance care plans, that were not available in hospital.Conclusions Unless ACP documents are consistently communicated from general practice, patient’s preferences may be unknown during end-of-life care. It is important that both doctors and patients are supported to use connected electronic health records to ensure that documents are readily available to healthcare staff when they are required.

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Personal and Social Consequences of Psychotropic Substance Use: A Population-Based Internet Survey

Medicina ◽

10.3390/medicina58010065 ◽

2022 ◽

Vol 58 (1) ◽

pp. 65

Author(s):

María Luisa Ballestar-Tarín ◽

Vanessa Ibáñez-del-Valle ◽

Omar Cauli ◽

Rut Navarro-Martínez

Keyword(s):

Drug Abuse ◽

Online Survey ◽

Age Groups ◽

Population Based ◽

Social Consequences ◽

Internet Survey ◽

Health Concern ◽

Personal Consequences ◽

Socio Demographic Factors ◽

New Variables

Background and objectives: Drug abuse has become a major worldwide health concern among all age groups. The present study analyses substance misuse and its social and personal consequences using a population-based internet survey in Spain. Materials and Methods: Screening for drug abuse (of alcohol, marijuana/hashish and psychostimulants) and its related risks and problems was performed using the Car, Relax, Alone, Forget, Friends, Trouble (CRAFFT) score. Socio-demographic factors, depressive, anxiety and stress symptoms as well as health habits were also evaluated. We used Linear regression methods to compare each variable’s individual contribution so as to determine which one best explains the results. Results: In this population-based study, 1224 people completed and returned the online survey. Of all participants, 57% reported consuming at least one substance based on the CRAFFT scale. While increasing age reduces the probability of personal and social consequences of consumption, people who smoke receive up to three times more (OR = 3.370) recommendations from family and friends to reduce their consumption. As for the type of substance, the consumption of marijuana increases the risk of forgetting (OR = 2.33) and the consumption of other psychostimulant substances almost triples the risk of consuming alone (OR = 2.965). Combining substances can increase the rate of driving a vehicle after consumption by 3.4 times. Conclusions: Although age, smoking and the type of substances used increase the risk of suffering from social and personal consequences of the use or abuse of substances, future studies are needed to determine the influence of new variables as a potential tool for treating and minimizing the adverse consequences of drug abuse.

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