A Literature Review of Possible Barriers and Knowledge Gaps of General Practitioners in Implementing Advance Care Planning in Ireland: Experience from Other Countries

An Advance Care Plan (ACP) is a process of decision-making concerning end of life care that embodies a patient’s values and wishes, for a time when patients are unable to make such decisions for themselves. ACPs have been employed into medical practices worldwide; however, they remain largely uncompleted by general practitioners (GPs), regardless of their benefits to patients and their families with respect to end of life (EOL) care. Furthermore, ACPs will soon be implemented into clinician practices across Ireland, as part of the Assisted Decision Making (Capacity) Act 2015. This review aims to explore the literature to examine challenges GPs may face in employing ACPs into clinical practice. An electronic search was performed through three databases: PubMed, MEDLINE, and CINAHL Plus, through which a total of eleven studies met the selection criteria. Additionally, three studies were provided by experts in the field. Thus, a total of fourteen studies were condensed and critically appraised through CASP (Critical Appraisal Skills Program), which concluded that the quality of the studies was high. Through this review, knowledge gaps and barriers for GPs regarding ACPs were identified. Barriers for implementing ACPs into practice were categorized into three major themes: barriers for the GP, barriers in the healthcare system, and barriers regarding the patient. These included insufficient time, complexity of the ACP documents themselves, uncertainty of the disease prognosis, and the ultimate fear of inducing anxiety and loss of hope in patients.

Nurse-led advance care planning with older people who have end-stage kidney disease: feasibility of a deferred entry randomised controlled trial incorporating an economic evaluation and mixed methods process evaluation (ACReDiT)

Background Advance Care Planning is recommended for people with end-stage kidney disease but evidence is limited. Robust clinical trials are needed to investigate the impact of advance care planning in this population. There is little available data on cost-effectiveness to guide decision makers in allocating resources for advance care planning. Therefore we sought to determine the feasibility of a randomised controlled trial and to test methods for assessing cost-effectiveness. Methods A deferred entry, randomised controlled feasibility trial, incorporating economic and process evaluations, with people with end-stage kidney disease, aged 65 years or older, receiving haemodialysis, in two renal haemodialysis units in Northern Ireland, UK. A nurse facilitator helped the patient make an advance care plan identifying: a surrogate decision-maker; what the participant would like to happen in the future; any advance decision to refuse treatment; preferred place of care at end-of-life. Results Recruitment lasted 189 days; intervention and data collection 443 days. Of the 67 patients invited to participate 30 (45%) declined and 36 were randomised to immediate or deferred advance care plan groups. Twenty-two (61%) made an advance care plan and completed data collection at 12 weeks; 17 (47.2%) were able to identify a surrogate willing to be named in the advance care plan document. The intervention was well-received and encouraged end-of-life conversations, but did not succeed in helping patients to fully clarify their values or consider specific treatment choices. There was no significant difference in health system costs between the immediate and deferred groups. Conclusions A trial of advance care planning with participants receiving haemodialysis is feasible and acceptable to patients, but challenging. A full trial would require a pool of potential participants five times larger than the number required to complete data collection at 3 months. Widening eligibility criteria to include younger (under 65 years of age) and less frail patients, together with special efforts to engage and retain surrogates may improve recruitment and retention. Traditional advance care planning outcomes may need to be supplemented with those that are defined by patients, helping them to participate with clinicians in making medical decisions. Trial registration Registered December 16, 2015. ClinicalTrials.gov Identifier: NCT02631200.

PP30 The ambulance service and the child and young person’s advance care plan: listening to families and professionals

BackgroundThe Child and Young Person’s Advance Care Plan (CYPACP) is a set of resources to help families and professionals agree a plan of care to be followed when a child/young person with a life-limiting condition develops potentially (i) reversible intercurrent illnesses or (ii) life-threatening complications of their condition. It covers clinical, psychosocial and spiritual issues, is designed for use in all environments that the child encounters, and can be used as a resuscitation and/or end-of-life plan. Little is known about the experiences of Ambulance Service staff who receive copies of these plans and may be called upon to follow the recommendations for treatment and resuscitation.MethodsAs part of a regional qualitative research study, families who have a CYPACP and members of the ambulance service were invited to share their views and experiences of the CYPACP via an online survey, in focus groups or individual interviews. Underpinned by an interpretative framework, thematic and linguistic analyses are being used to understand the implementation in ‘real-world’ settings, and how the CYPACP shapes the experience, delivery and quality of care.ResultsTo date 20 families with a CYPACP and 25 members of the ambulance service have taken part. Analysis is on-going. Preliminary findings show that despite families with CYPACPs having multiple experiences of interactions with the ambulance service, it is rare for ambulance crews to attend a call where a child has a CYPACP in place. Findings also suggest that there are critical points within the process of conveying the information contained within the CYPACP document that could be improved.ConclusionFollowing full analysis, it is anticipated that the ambulance services involvement with the CYPACP planning process will be better understood and that improvement strategies, including revision to existing documentation and identification of specific support needs can be made.

Advance care planning and syringe drivers in palliative and end-of-life care

This article discusses the practicalities of syringe drivers (subcutaneous continuous infusion pumps) for symptom control in patients requiring palliative or end-of-life care, which may form part of an advance care plan. It includes a discussion of palliative and end-of-life care, advance care planning, and when a syringe driver might be beneficial for the patient. It also provides step-by-step clinical guidance on setting up a syringe driver.

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

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.

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

Background Doctors, particularly general practitioners, play a significant role in assisting patients to create advance care plans. These documents are important tools to ensure that the end-of-life care a patient receives is in alignment with their 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 in a large regional Australian hospital with a catchment population in excess of 300,000. 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 corresponding general practice file was examined. Data were tested for normality and 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. 144 corresponding general practice records of the 309 hospital files without a system alert were examined. Of these, 14.6% included at least one ACP document, and four patients had an advance care plan that was not available in hospital. Conclusions Unless ACP documents are consistently communicated from general practice, advance care plans may go unreferenced 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.

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

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.