Advance care planning in multiple sclerosis: reflections of a palliative care physician

2021 ◽  
Vol 17 (Sup3) ◽  
pp. S20-S22
Author(s):  
Lorraine Petersen
Keyword(s):  
Multiple Sclerosis ◽  
Advance Care Planning ◽  
Good Life ◽  
Care Physician ◽  
Care Planning ◽  
Medical Treatments ◽  
Usual Practice ◽  
Advance Care ◽  
Length Of Life ◽  
Palliative Care Physician

Multiple sclerosis (MS) has a long illness trajectory punctuated by serious acute events, with a later stage that is often accompanied by cognitive impairment. There is ample time for advance care planning (ACP) discussions. While there is much to be learned about the optimal way to approach ACP for people living with MS, it is possible to approach these discussions sensitively at all stages of the condition. However, as such voluntary discussions currently lie outside usual practice, people living with MS are denied the opportunities to consider the effect future medical treatments may have on their quality and length of life. How can clinicians assist in planning for a ‘good life’ and a ‘good death’?

scholarly journals Exploration of the acceptability and usability of advance care planning tools in long term care homes

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Tamara Sussman ◽  
Sharon Kaasalainen ◽  
Rennie Bimman ◽  
Harveer Punia ◽  
Nathaniel Edsell ◽  
...  
Keyword(s):  
Content Analysis ◽  
Focus Group ◽  
Advance Care Planning ◽  
Long Term Care ◽  
Care Planning ◽  
Term Care ◽  
Usual Practice ◽  
Frail Older Persons ◽  
Advance Care

Abstract Objectives Despite known benefits, advance care planning (ACP) is rarely a component of usual practice in long-term care (LTC). A series of tools and workbooks have been developed to support ACP uptake amongst the generable population. Yet, their potential for improving ACP uptake in LTC has yet to be examined. This study explored if available ACP tools are acceptable for use in LTC by (a) eliciting staff views on the content and format that would support ACP tool usability in LTC (b) examining if publicly available ACP tools include content identified as relevant by LTC home staff. Ultimately this study aimed to identify the potential for existing ACP tools to improve ACP engagement in LTC. Methods A combination of focus group deliberations with LTC home staff (N = 32) and content analysis of publicly available ACP tools (N = 32) were used to meet the study aims. Results Focus group deliberations suggested that publicly available ACP tools may be acceptable for use in LTC if the tools include psychosocial elements and paper-based versions exist. Content analysis of available paper-based tools revealed that only a handful of ACP tools (32/611, 5%) include psychosocial content, with most encouraging psychosocially-oriented reflections (30/32, 84%), and far fewer providing direction around other elements of ACP such as communicating psychosocial preferences (14/32, 44%) or transforming preferences into a documented plan (7/32, 22%). Conclusions ACP tools that include psychosocial content may improve ACP uptake in LTC because they elicit future care issues considered pertinent and can be supported by a range of clinical and non-clinical staff. To increase usability and engagement ACP tools may require infusion of scenarios pertinent to frail older persons, and a better balance between psychosocial content that elicits reflections and psychosocial content that supports communication.

Advance care planning in community: Evaluation of a two-session workshop.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 14-14
Author(s):  
Michael Rabow ◽  
Marilyn McGowan ◽  
Rebecca Small ◽  
Redwing Keyssar ◽  
Hope S. Rugo
Keyword(s):  
Family Caregivers ◽  
Advance Care Planning ◽  
Group Discussion ◽  
Care Physician ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Care Planning ◽  
Community Evaluation ◽  
Advance Care ◽  
Workshop Evaluation

14 Background: Engaging patients in advance care planning (ACP) is challenging. Group visits and multiple patient-clinician interactions appear to promote advance directive (AD) completion. We evaluated the effectiveness of a two-session ACP workshop. Methods: We conducted a nurse-led ACP workshop for patients and their family caregivers in a comprehensive cancer center. Patients were invited by their outpatient palliative care physician and an assistant helped coordinate attendance. Monthly sessions were 2 hours long and 2 weeks apart. The first session detailed the ACP process, featured the “Go Wish” card game, and introduced the “Five Wishes” AD. In the time between sessions, patients were encouraged to play Go Wish with family and to begin filling out their AD. The second session included questions and discussion, and helped patients complete, notarize, and scan their AD into the EMR. Workshop evaluation included the validated 4-question Sudore ACP Readiness Survey as well as semi-structured participant interviews. Results: Ten of 11 participants from 4 workshop offerings completed surveys. Median age was 48 years (range 41-72). Most patients (10/11, 90.9%) had breast cancer. Mean pre-workshop ACP readiness was 4.0 out of 5; post-workshop readiness increased nearly significantly to 4.325 (p = .057). Eight of the workshop participants (72.7%) had a new notarized AD scanned into the EMR. Participants most appreciated the chance to talk with other patients (“The most important thing was having a group there. I don’t think I ever would have read that packet if it had just been handed to me.”) and the chance to include their family caregivers (“My family and I had a rich and bonding talk, which was helpful for their own thinking about the AD for themselves as well.”). Two family caregivers completed their own AD. Patients who declined a workshop invitation most commonly reported they “did not have time” because of medical appointments. Conclusions: The ACP workshop was well received by participants and increased ACP readiness, discussion, and completion. The opportunities for group discussion and inclusion of family caregivers were important to participants. Barriers to attending workshops must be explored.

scholarly journals Exploring the Acceptability and Relevance of Tool-supported Advance Care Planning (ACP) for a Long-term Care (LTC) Home Environment

2020 ◽  
Author(s):  
Tamara Sussman ◽  
Sharon Kaasalainen ◽  
Rennie Bimman ◽  
Harveer Punia ◽  
Nathaniel Edsell ◽  
...  
Keyword(s):  
Content Analysis ◽  
Focus Group ◽  
Advance Care Planning ◽  
Long Term Care ◽  
Care Planning ◽  
Term Care ◽  
Usual Practice ◽  
Frail Older Persons ◽  
Advance Care

Abstract Objectives: Despite known benefits, advance care planning (ACP) is rarely a component of usual practice in long-term care (LTC). A series of tools and workbooks have been developed to support ACP uptake. Yet, their acceptability and relevance for LTC has yet to be examined. This study explored the extent to which available ACP materials hold promise in improving ACP engagement in LTC by (1) exploring LTC home staff’s reactions to tool supported ACP and (2) examining if available ACP tools include content of relevance to LTC. Methods: A combination of focus group deliberations with LTC home staff (N=32) and content analysis of publicly available ACP workbooks (N=32) were used to meet the study aims. Results: Focus group deliberations suggested that tool-directed ACP is a promising approach for LTC, provided tools include psychosocial elements and are paper-based. Content analysis of available tools revealed that only a handful of paper-based ACP tools (32/611, 5%) include, psychosocial content, with most encouraging psychosocially-oriented reflections (30/32, 84%), and far fewer providing direction around other elements of ACP such as communicating psychosocial preferences (14/32, 44%) or transforming preferences into a documented plan (7/32, 22%).Conclusions: Tool-supported ACP appears acceptable to LTC staff. To improve ACP uptake in LTC selected tools should include psychosocial content that can be supported by a range of clinical and non-clinical staff. Available ACP tools may require infusion of scenarios pertinent to frail older persons, and a better balance between psychosocial content that elicits reflections and psychosocial content that supports communication.

scholarly journals Study protocol on advance care planning in multiple sclerosis (ConCure-SM): intervention construction and multicentre feasibility trial

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e052012
Author(s):  
Ludovica De Panfilis ◽  
Simone Veronese ◽  
Michela Bruzzone ◽  
Marta Cascioli ◽  
Alberto Gajofatto ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Advance Care Planning ◽  
Phase 1 ◽  
Training Programme ◽  
Care Plan ◽  
Feasibility Trial ◽  
Treatment Preferences ◽  
Care Planning ◽  
Phase 2 ◽  
Advance Care

IntroductionMultiple sclerosis (MS) is the most common cause of progressive neurological disability in young adults. The use of advance care planning (ACP) for people with progressive MS (pwPMS) remains limited. The ConCure-SM project aims to assess the effectiveness of a structured ACP intervention for pwPMS. The intervention consists of a training programme on ACP for healthcare professionals caring for pwPMS, and a booklet to be used during the ACP conversation. Herein, we describe the first two project phases.MethodsIn phase 1 we translated and adapted, to the Italian legislation and MS context, the ACP booklet of the National ACP Programme for New Zealand. Acceptability, comprehensibility and usefulness of the booklet were assessed via 13 personal cognitive interviews with pwPMS and significant others (SOs), and one health professional focus group. Based on these findings, we will revise the booklet. In phase 2 we will conduct a single-arm pilot/feasibility trial with nested qualitative study. Participants will be 40 pwPMS, their SOs, health professionals from six MS and rehabilitation centres in Italy. In the 6 months following the ACP conversation, we will assess completion of an advance care plan document (primary outcome), as well as safety of the intervention. Secondary outcomes will be a range of measures to capture the full process of ACP; patient-carer congruence in treatment preferences; quality of patient-clinician communication and caregiver burden. A qualitative process evaluation will help understand the factors likely to influence future implementation and scalability of the intervention.Ethics and disseminationThe project is coleaded by a neurologist and a bioethicist. Phase 1 has received ethical approvals from each participating centre, while phase 2 will be submitted to the centres in May 2021. Findings from both phases will be disseminated widely through peer-reviewed publications, conferences and workshops.Trial registration numberISRCTN48527663; Pre-results.

scholarly journals A realist review of advance care planning for people with multiple sclerosis and their families

PLoS ONE ◽  
2020 ◽  
Vol 15 (10) ◽  
pp. e0240815
Author(s):  
Laura Cottrell ◽  
Guillaume Economos ◽  
Catherine Evans ◽  
Eli Silber ◽  
Rachel Burman ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Advance Care Planning ◽  
Realist Review ◽  
Care Planning ◽  
Advance Care

scholarly journals When the Professional Turns Personal: Healthcare Providers and Their Own Advance Care Planning During the Pandemic

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 133-133
Author(s):  
Brian Carpenter
Keyword(s):  
Advance Care Planning ◽  
Healthcare Professionals ◽  
Treatment Options ◽  
Healthcare Providers ◽  
Care Physician ◽  
Care Planning ◽  
Care Plans ◽  
Clinical Observations ◽  
Care Partners ◽  
Advance Care

Abstract As healthcare professionals counseled patients and care partners during the pandemic about treatment options, clinical probabilities, and preparations for death, they had opportunities to reflect on how they themselves would want to be treated if they fell ill. We conducted a survey with healthcare professionals who were caring for patients during the pandemic and asked their work had affected their own advance care planning. Based on their clinical observations, 28% revised their personal interest in life-prolonging medical interventions. Substantial proportions had initiated conversations with partners (45%), parents (46%), and their primary care physician (29%) about their medical preferences. Similarly high percentages had encouraged family members and friends to update or complete their advance care plans, and 26% intended to initiate planning in the near future. Interest in advance care planning is high among healthcare professionals, who may benefit from tailored resources that acknowledge their clinical experience.

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