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1.
PLoS One ; 17(5): e0265861, 2022.
Article in English | MEDLINE | ID: covidwho-1933213

ABSTRACT

BACKGROUND: Little is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives. AIM: To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP. METHODS: We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. RESULTS: Participants' narratives focused on three major themes: (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals' accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions. CONCLUSION: These findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.


Subject(s)
Advance Care Planning , Multiple Sclerosis , Family , Humans , Multiple Sclerosis/therapy , Palliative Care , Qualitative Research
3.
J Clin Ethics ; 33(2): 101-111, 2022.
Article in English | MEDLINE | ID: covidwho-1897766

ABSTRACT

For those with advanced life-limiting illness, the optimization of quality of life and avoidance of nonbeneficial treatments at the end of life are key ethical concerns. This article evaluates the efficacy of an Interdisciplinary Ethics Panel (IEP) approach to decision making at the end of life for unbefriended nursing home residents who lack decisional capacity and have advanced life-limiting illness, through the use of a nine-step algorithm developed for this purpose. We reviewed the outcomes of three quality-of-care phased initiatives conducted in our facility, a large public nursing home in New York City, between June 2016 and February 2020, which indicated that this IEP approach promoted advance-care planning, as palliative measures were endorsed to optimize quality of life for this vulnerable population at the end of life. We also examined another quality-of-care initiative when this IEP approach was applied to end-of-life decision making for nursing home residents who had a surrogate during the COVID-19 pandemic. This application appeared to be beneficial in adding more residents to our Palliative Care Program while it improved rates of advance-care planning. When all of the above findings are considered, we believe this novel IEP approach and algorithm have the potential to be applied elsewhere after appropriate assessment.


Subject(s)
Advance Care Planning , COVID-19 , Terminal Care , Death , Decision Making , Humans , Nursing Homes , Pandemics , Quality of Life
4.
Health Expect ; 25(3): 1016-1028, 2022 Jun.
Article in English | MEDLINE | ID: covidwho-1861341

ABSTRACT

INTRODUCTION: Traditional advance care planning focuses on end-of-life planning in the context of a certain or imminent death. It is not tailored for serious illness planning, where the 'death' outcome is uncertain. The Plan Well Guide™ (PWG) is a decision aid that empowers lay persons to better understand different types of care and prepares them, and their substitute decision-makers, to express both their authentic values and informed treatment preferences in anticipation of serious illness. A cultural adaptation was necessary to make the material suitable to the context of Quebec, a French-speaking Canadian province. METHODS: We engaged lay collaborators and experts in a panel, involving three phases of consultation and data collection. These included an online questionnaire, focused interviews and virtual focus groups that identified elements within the francophone PWG affecting its feasibility, adaptation and integration, as well as items that should be modified. RESULTS: We engaged 22 collaborators between April and September 2021. The majority (82%) ranked the first translation as good or very good; most (70%) stated that they would recommend the final adaptation. Both lay and expert panel members suggested simplifying the language and framing the tool better within the context of other advance medical planning processes in Quebec. Translation was considered in a cultural context; the challenges identified by the research team or by collaborators were addressed during the focus group. Examples of wording that required discussion include translating 'getting the medical care that's right for you' when referring to the PWG's goal. An equivalent expression in the French translation was believed to invoke religious associations. Using the term 'machines' to describe life-sustaining treatments was also deliberated. CONCLUSION: Our collaborative iterative adaptation process led to the first French advanced serious illness planning tool. How acceptable and user-friendly this French adaptation of the PWG is in various Canadian French-speaking environments requires further study. CONTRIBUTION: We organized a focus group inviting both lay collaborators and experts to contribute to the interpretation of the results of the previous phases. This choice allowed us to add more value to our results and to the final PWG in French.


Subject(s)
Advance Care Planning , Canada , Decision Support Techniques , Humans , Quebec , Surveys and Questionnaires
5.
BMC Geriatr ; 22(1): 419, 2022 05 13.
Article in English | MEDLINE | ID: covidwho-1846796

ABSTRACT

BACKGROUND: Advance care planning in nursing homes is important to ensure the wishes and preferences of residents are recorded, especially during the COVID-19 pandemic. However, care staff and family members frequently report feeling unprepared for these conversations. More resources are needed to support them with these necessary discussions. This research aimed to develop, implement and evaluate a website intervention for care staff and family members to provide training and information about advance care planning during COVID-19. METHODS: The research was a primarily qualitative case study design, comprising multiple UK nursing home cases. Data collection included semi-structured interviews with care staff and family members which were coded and analysed thematically. A narrative synthesis was produced for each case, culminating in a thematic cross-case analysis of the total findings. Theoretical propositions were refined throughout the research. RESULTS: Eight nursing homes took part in the study, involving 35 care staff and 19 family members. Findings were reported according to the RE-AIM framework which identified the reach, effectiveness, adoption, implementation and maintenance of the intervention. Themes included: website content that was well received; suggestions for improvement; implementation barriers and facilitators; examples of organisational and personal impact. CONCLUSIONS: Four theoretical propositions relating to advance care planning in nursing homes are presented, relating to: training and information needs, accessibility, context, and encouraging conversations. Implications for practice and training include an awareness of diverse learning styles, re-enforcing the right to be involved in advance care planning and encouraging opportunities for facilitated discussion. TRIAL REGISTRATION: ISRCTN registry (ID 18003630 ) on 19.05.21.


Subject(s)
Advance Care Planning , COVID-19 , COVID-19/epidemiology , Humans , Nursing Homes , Pandemics , United Kingdom/epidemiology
6.
PLoS One ; 17(4): e0266826, 2022.
Article in English | MEDLINE | ID: covidwho-1808566

ABSTRACT

Advance care planning (ACP) can improve outcomes for persons living with dementia (PLwD). Clinicians see the lack of acceptability of these conversations as a barrier to ACP in individuals with mild dementia. COVID-19 pandemic has magnified the need for ACP discussions in older adults, particularly for those living with dementia. In light of the pandemic, much of the healthcare is provided virtually, but little evidence exists on how to best implement ACP virtually. We designed Voice Your Values (VYV), a tailored ACP intervention for persons living with mild dementia and their trusted individuals such as friends or family. Purpose Determine the acceptability of the VYV intervention, in terms of its content and the potential utility of videoconferencing to deliver it. Methods For this pilot study, we recruited 21 dyads of older adults with mild dementia and their trusted individuals from five geriatric clinics in Ontario, Canada. The tailored VYV intervention was delivered to dyads over two sessions over videoconferencing. Acceptability was assessed using scores on a modified Treatment Evaluation Inventory. The interventionist diary and Researcher Virtual Experience Questionnaire were used to examine facilitators and barriers, whereas Participant Virtual Experience Questionnaire was used to understand their experience. Qualitative data was analyzed using inductive content analysis. Results 100% of the participants rated VYV as acceptable. Participants and researcher rated video and sound quality highly. PLwD who lived with their trusted individuals were more likely to find the intervention acceptable (t = 3.559, p = 0.001, ß = 0.323). Five interrelated themes were established that describe the acceptability of the virtually delivered VYV intervention. All PLwD were able to articulate their values and wishes related to being in a terminal and vegetative states and had them documented. Conclusion The virtual VYV intervention was an acceptable approach to ACP in older adults with mild dementia and their trusted individuals.


Subject(s)
Advance Care Planning , COVID-19 , Dementia , Aged , Dementia/therapy , Humans , Ontario , Pandemics , Pilot Projects , Technology , Videoconferencing
7.
J Gen Intern Med ; 37(8): 1996-2002, 2022 06.
Article in English | MEDLINE | ID: covidwho-1782933

ABSTRACT

BACKGROUND: Black and Hispanic people are more likely to contract COVID-19, require hospitalization, and die than White people due to differences in exposures, comorbidity risk, and healthcare access. OBJECTIVE: To examine the association of race and ethnicity with treatment decisions and intensity for patients hospitalized for COVID-19. DESIGN: Retrospective cohort analysis of manually abstracted electronic medical records. PATIENTS: 7,997 patients (62% non-Hispanic White, 16% non-Black Hispanic, and 23% Black) hospitalized for COVID-19 at 135 community hospitals between March and June 2020 MAIN MEASURES: Advance care planning (ACP), do not resuscitate (DNR) orders, intensive care unit (ICU) admission, mechanical ventilation (MV), and in-hospital mortality. Among decedents, we classified the mode of death based on treatment intensity and code status as treatment limitation (no MV/DNR), treatment withdrawal (MV/DNR), maximal life support (MV/no DNR), or other (no MV/no DNR). KEY RESULTS: Adjusted in-hospital mortality was similar between White (8%) and Black patients (9%, OR=1.1, 95% CI=0.9-1.4, p=0.254), and lower among Hispanic patients (6%, OR=0.7, 95% CI=0.6-1.0, p=0.032). Black and Hispanic patients were significantly more likely to be treated in the ICU (White 23%, Hispanic 27%, Black 28%) and to receive mechanical ventilation (White 12%, Hispanic 17%, Black 16%). The groups had similar rates of ACP (White 12%, Hispanic 12%, Black 11%), but Black and Hispanic patients were less likely to have a DNR order (White 13%, Hispanic 8%, Black 7%). Among decedents, there were significant differences in mode of death by race/ethnicity (treatment limitation: White 39%, Hispanic 17% (p=0.001), Black 18% (p<0.0001); treatment withdrawal: White 26%, Hispanic 43% (p=0.002), Black 28% (p=0.542); and maximal life support: White 21%, Hispanic 26% (p=0.308), Black 36% (p<0.0001)). CONCLUSIONS: Hospitalized Black and Hispanic COVID-19 patients received greater treatment intensity than White patients. This may have simultaneously mitigated disparities in in-hospital mortality while increasing burdensome treatment near death.


Subject(s)
Advance Care Planning , COVID-19 , COVID-19/therapy , Hispanic or Latino , Hospitalization , Humans , Retrospective Studies
8.
9.
JAMA Netw Open ; 5(2): e220354, 2022 02 01.
Article in English | MEDLINE | ID: covidwho-1699967

ABSTRACT

Importance: COVID-19 has disproportionately killed older adults and racial and ethnic minority individuals, raising questions about the relevance of advance care planning (ACP) in this population. Video decision aids and communication skills training offer scalable delivery models. Objective: To assess whether ACP video decision aids and a clinician communication intervention improved the rate of ACP documentation during an evolving pandemic, with a focus on African American and Hispanic patients. Design, Setting, and Participants: The Advance Care Planning: Communicating With Outpatients for Vital Informed Decisions trial was a pre-post, open-cohort nonrandomized controlled trial that compared ACP documentation across the baseline pre-COVID-19 period (September 15, 2019, to March 14, 2020), the COVID-19 wave 1 period (March 15, 2020, to September 14, 2020), and an intervention period (December 15, 2020, to June 14, 2021) at a New York metropolitan area ambulatory network of 22 clinics. All patients 65 years or older who had at least 1 clinic or telehealth visit during any of the 3 study periods were included. Main Outcomes and Measures: The primary outcome was ACP documentation. Results: A total of 14 107 patients (mean [SD] age, 81.0 [8.4] years; 8856 [62.8%] female; and 2248 [15.9%] African American or Hispanic) interacted with clinicians during the pre-COVID-19 period; 12 806 (mean [SD] age, 81.2 [8.5] years; 8047 [62.8%] female; and 1992 [15.6%] African American or Hispanic), during wave 1; and 15 106 (mean [SD] 80.9 [8.3] years; 9543 [63.2%] female; and 2535 [16.8%] African American or Hispanic), during the intervention period. Clinicians documented ACP in 3587 patients (23.8%) during the intervention period compared with 2525 (17.9%) during the pre-COVID-19 period (rate difference [RD], 5.8%; 95% CI, 0.9%-7.9%; P = .01) and 1598 (12.5%) during wave 1 (RD, 11.3%; 95% CI, 6.3%-12.1%; P < .001). Advance care planning was documented in 447 African American patients (30.0%) during the intervention period compared with 233 (18.1%) during the pre-COVID-19 period (RD, 11.9%; 95% CI, 4.1%-15.9%; P < .001) and 130 (11.0%) during wave 1 (RD, 19.1%; 95% CI, 11.7%-21.2%; P < .001). Advance care planning was documented for 222 Hispanic patients (21.2%) during the intervention period compared with 127 (13.2%) during the pre-COVID-19 period (RD, 8.0%; 95% CI, 2.1%-10.9%; P = .004) and 82 (10.2%) during wave 1 (RD, 11.1%; 95% CI, 5.5%-14.5%; P < .001). Conclusions and Relevance: This intervention, implemented during the evolving COVID-19 pandemic, was associated with higher rates of ACP documentation, especially for African American and Hispanic patients. Trial Registration: ClinicalTrials.gov Identifier: NCT04660422.


Subject(s)
Advance Care Planning/statistics & numerical data , COVID-19 , African Americans/statistics & numerical data , Aged , Aged, 80 and over , Clinical Decision-Making , Cohort Studies , Female , Humans , Male , New York/epidemiology , Patient Education as Topic , Videotape Recording
10.
Health Expect ; 25(1): 345-354, 2022 02.
Article in English | MEDLINE | ID: covidwho-1691571

ABSTRACT

BACKGROUND: Despite the established benefits of Advance Care Planning (ACP), engagement remains low in British Columbia. Since 2016, a growing number of community-based nonprofits have offered ACP education. To date, no study has focused on the perspectives of nonprofits on ACP in British Columbia. OBJECTIVE: This study aimed to identify barriers and facilitating actions to ACP as perceived by British Columbian nonprofits. DESIGN: A mixed-methods design was used. Data were collected through online surveys and telephone interviews. SETTING AND PARTICIPANTS: Staff and volunteers from British Columbian nonprofits that are providing or interested in providing public education on ACP were recruited for this study. RESULTS: The lack of public awareness of ACP, the emotional difficulty of the conversation, the complicated ACP process, the belief that ACP is synonymous with completing a medical order form, the challenge of introducing ACP in different cultural contexts and the siloed approach to ACP education were rated as the most important barriers to ACP engagement. The most important facilitating actions were developing clear messages, improving ACP literacy, reframing ACP as part of life planning, simplifying ACP documentation and transfer, integrating ACP conversations into clinical practice and better collaboration between the health system and nonprofits. DISCUSSION: This study identifies numerous opportunities to improve ACP engagement in British Columbia from a community lens. To maximize ACP engagement, community-led ACP education should be offered in coordination with the health system. CONCLUSION: Community-led ACP education as well as collaboration and consultation with nonprofits are part of the solution to the low ACP engagement in British Columbia. PUBLIC CONTRIBUTION: Study participants, including staff and volunteers at nonprofits, are members of the public.


Subject(s)
Advance Care Planning , British Columbia , Communication , Humans , Surveys and Questionnaires
11.
Chest ; 161(6): 1609-1619, 2022 06.
Article in English | MEDLINE | ID: covidwho-1636366

ABSTRACT

BACKGROUND: The COVID-19 pandemic has presented new challenges surrounding end-of-life planning and has been associated with increased online discussion about life support. RESEARCH QUESTION: How has online communication about advance care planning (ACP) and specific life-sustaining interventions (LSIs) changed during the pandemic? STUDY DESIGN AND METHODS: Conversations on Twitter containing references to LSIs (eg, "ECMO") or ACP (eg, "DNR/DNI") were collected between January 2019 and May 2021. User account metadata were used to predict user demographic information and to classify users as organizations, individuals, clinicians, or influencers. The number of impressions was compared across these user categories and the content of tweets analyzed by using natural language processing models to identify topics of discussion and associated emotional sentiment. RESULTS: There were 202,585 unique tweets about LSIs and 67,162 unique tweets about ACP. Users who were younger, male, or influencers were more likely to discuss LSIs online. Tweets about LSIs were associated with more positive emotional sentiment scores than tweets about ACP (LSIs, 0.3; ACP, -0.2; P < .001). Among tweets about ACP, most contained personal experiences related to the death of loved ones (27%) or discussed discrimination through do-not-resuscitate orders directed at the elderly and disabled (19%). Personal experiences had the greatest retweet-to-tweet-ratio (4.7), indicating high levels of user engagement. Tweets about discrimination contained the most negative net sentiment score (-0.5). INTERPRETATION: The observed increase in tweets regarding LSIs and ACP suggests that Twitter was consistently used to discuss treatment modalities and preferences related to intensive care during the pandemic. Future interventions to increase online engagement with ACP may consider leveraging influencers and personal stories. Finally, we identified do-not-resuscitate-related discrimination as a commonly held public fear, which should be further explored as a barrier to ACP completion and can be proactively addressed by clinicians during bedside goals-of-care discussions.


Subject(s)
Advance Care Planning , COVID-19 , Social Media , Aged , COVID-19/epidemiology , Communication , Humans , Male , Pandemics
13.
Palliat Med ; 36(2): 342-347, 2022 02.
Article in English | MEDLINE | ID: covidwho-1582705

ABSTRACT

BACKGROUND: Advance care planning allows patients to share their preferences for medical care with the aim of ensuring goal-concordant care in times of serious illness. The morbidity and mortality of the COVID-19 pandemic has increased the importance and public visibility of advance care planning. However, little is known about the frequency and quality of advance care planning documentation during the pandemic. AIM: This study examined the frequency, quality, and predictors of advance care planning documentation among hospitalized medical patients with and without COVID-19. DESIGN: This retrospective cohort analysis used multivariate logistic regression to identify factors associated with advance care planning documentation. SETTING/PARTICIPANTS: This study included all adult patients tested for COVID-19 and admitted to a tertiary medical center in San Francisco, CA during March 2020. RESULTS: Among 262 patients, 31 (11.8%) tested positive and 231 (88.2%) tested negative for SARS-CoV-2. The rate of advance care planning documentation was 38.7% in patients with COVID-19 and 46.8% in patients without COVID-19 (p = 0.45). Documentation consistently addressed code status (100% and 94.4% for COVID-positive and COVID-negative, respectively), but less often named a surrogate decision maker, discussed prognosis, or elaborated on other wishes for care. Palliative care consultation was associated with increased advance care planning documentation (OR: 6.93, p = 0.004). CONCLUSION: This study found low rates of advance care planning documentation for patients both with and without COVID-19 during an evolving global pandemic. Advance care planning documentation was associated with palliative care consultation, highlighting the importance of such consultation to ensure timely, patient-centered advance care planning.


Subject(s)
Advance Care Planning , COVID-19 , Academic Medical Centers , Adult , Documentation , Humans , Pandemics , Retrospective Studies , SARS-CoV-2
14.
J Am Med Dir Assoc ; 23(1): 1-6.e1, 2022 01.
Article in English | MEDLINE | ID: covidwho-1545127

ABSTRACT

OBJECTIVES: To explore how physicians in Dutch nursing homes practiced advance care planning (ACP) during the first wave of the COVID-19 pandemic, and to explore whether and how ACP changed during the first wave of the pandemic. DESIGN: Qualitative analysis of an online, mainly open-ended questionnaire on ACP among physicians working in nursing homes in the Netherlands during the first wave of the COVID-19 pandemic. SETTING AND PARTICIPANTS: Physicians in Dutch nursing homes. METHODS: Respondents were asked to describe a recent case in which they had a discussion on anticipatory medical care decisions and to indicate whether ACP was influenced by the COVID-19 pandemic in that specific case and in general. Answers were independently coded and a codebook was compiled in which the codes were ordered by themes that emerged from the data. RESULTS: A total of 129 questionnaires were filled out. Saturation was reached after analyzing 60 questionnaires. Four main themes evolved after coding the questionnaires: reasons for ACP discussion, discussing ACP, topics discussed in ACP, and decision making in ACP. COVID-19-specific changes in ACP indicated by respondents included (1) COVID-19 infection as a reason for initiating ACP, (2) a higher frequency of ACP discussions, (3) less face-to-face contact with surrogate decision makers, and (4) intensive care unit admission as an additional topic in anticipatory medical decision making. CONCLUSIONS AND IMPLICATIONS: ACP in Dutch nursing homes has changed because of the COVID-19 pandemic. Maintaining frequent and informal contact with surrogate decision makers fosters mutual understanding and aids the decision-making process in ACP.


Subject(s)
Advance Care Planning , COVID-19 , Humans , Nursing Homes , Pandemics/prevention & control , SARS-CoV-2
16.
J Health Commun ; 26(10): 684-695, 2021 10 03.
Article in English | MEDLINE | ID: covidwho-1517696

ABSTRACT

Advance care planning (ACP) is the process of communicating about end-of-life (EOL) care with loved ones. Due to the deadly nature of COVID-19, ACP is vital. Unfortunately, fewer than 30% of American patients engage in ACP. In addition to low motivation, people experiencing death anxiety (DA) similarly avoid ACP.  This finding coincides with predictions from terror management theory (TMT) that people avoid DA-arousing behaviors. Guided by the theory of planned behavior (TPB) and the health belief model (HBM), we posited COVID-19 risk perceptions would be positively associated with determinants of health behavior, including intention to share and ask loved ones about EOL wishes, as well as the associated attitudes, norms, and level of perceived behavioral control regarding ACP. Guided by TMT, we posited that DA negatively mediated relationships between COVID-19 risk perceptions and these behavioral determinants. An MTurk participant sample (N = 522) completed a survey about COVID-19 risk perceptions, DA, and health behavior determinants in the context of ACP. Results indicate COVID-19 risk perceptions were rarely directly related to these determinants. However, results of PROCESS mediation models examining the role of DA in these relationships reveal a different picture. While direct relationships were rarely significant, DA negatively mediated most relationships between COVID-19 risk perceptions and behavioral determinants. Our results indicate DA demotivates EOL communication during the COVID-19 pandemic; a concerning yet important finding due to the increased importance of ACP in the context of a deadly disease like COVID-19.


Subject(s)
Advance Care Planning , COVID-19 , Terminal Care , Anxiety , Humans , Intention , Pandemics , SARS-CoV-2
17.
Curr Opin Support Palliat Care ; 15(4): 199-204, 2021 12 01.
Article in English | MEDLINE | ID: covidwho-1511115

ABSTRACT

PURPOSE OF REVIEW: The purpose of this paper is (1) to provide insight in the palliative care needs of patients with COVID-19; (2) to highlight the challenges of COVID-19 for palliative care; and (3) to highlight developments in COVID-19 palliative care. RECENT FINDINGS: Patients with serious COVID-19 have palliative care needs in all domains: physical, psychological, social and spiritual. COVID-19 palliative care is confronted with many challenges, including: the uncertain prognosis, resource limitations, challenges regarding advance care planning, lack of guidance, limited multidisciplinary collaboration, need for remote communication, restrictions in family visits, and burden for clinicians. Palliative care responded with many developments: development of services; integration of palliative care with other services; tools to support advance care planning, (remote) communication with patients and families, or spiritual care; and care for team members. SUMMARY: Palliative care has an important role in this pandemic. Palliative care rapidly developed services and opportunities were found to support patients, families and clinicians. Further developments are warranted to face future demands of a pandemic, including integrated palliative care and education in palliative care skills across all specialties. Intervention studies are needed to enable evidence-based recommendations for palliative care in COVID-19.


Subject(s)
Advance Care Planning , COVID-19 , Humans , Palliative Care , Pandemics , SARS-CoV-2
18.
Stud Health Technol Inform ; 285: 31-38, 2021 Oct 27.
Article in English | MEDLINE | ID: covidwho-1502261

ABSTRACT

The Covid-19 pandemic has only accelerated the need and desire to deal more openly with mortality, because the effect on survival is central to the comprehensive assessment of harms and benefits needed to meet a 'reasonable patient' legal standard. Taking the view that this requirement is best met through a multi-criterial decision support tool, we offer our preferred answers to the questions of What should be communicated about mortality in the tool, and How, given preferred answers to Who for, Who by, Why, When, and Where. Summary measures, including unrestricted Life Expectancy and Restricted Mean Survival Time are found to be reductionist and relative, and not as easy to understand and communicate as often asserted. Full lifetime absolute survival curves should be presented, even if they cannot be 'evidence-based' beyond trial follow-up limits, along with equivalent measures for other criteria in the (necessarily) multi-criterial decision. A decision support tool should relieve the reasonable person of the resulting calculation burden.


Subject(s)
Advance Care Planning , Decision Support Systems, Clinical , COVID-19 , Humans , Pandemics
19.
JAMA ; 326(14): 1373-1374, 2021 10 12.
Article in English | MEDLINE | ID: covidwho-1490617
20.
J Pain Symptom Manage ; 60(2): 449-459.e21, 2020 08.
Article in English | MEDLINE | ID: covidwho-1454318

ABSTRACT

CONTEXT: Supplementary support services in palliative care for older people are increasingly common, but with neither recommended tools to measure outcomes nor reviews synthesizing anticipated outcomes. Common clinically focused tools may be less appropriate. OBJECTIVES: To identify stakeholder perceptions of key outcomes from supplementary palliative care support services, then map these onto outcome measurement tools to assess relevance and item redundancy. METHODS: A scoping review using the design by Arksey and O'Malley. EMBASE, CINAHL, MEDLINE, and PSYCHinfo searched using terms relating to palliative care, qualitative research, and supplementary support interventions. Articles were imported into Endnote™, and Covidence™ was used by two reviewers to assess against inclusion criteria. Included articles were imported into NVivo™ and thematically coded to identify key concepts underpinning outcomes. Each item within contender outcome measurement tools was assessed against each concept. RESULTS: Sixty included articles focused on advance care planning, guided conversations, and volunteer befriending services. Four concepts were identified: enriching relationships; greater autonomy and perceived control; knowing more; and improved mental health. Mapping concepts to contender tool items revealed issues of relevance and redundancy. Some tools had no redundant items but mapped only to two of four outcome themes; others mapped to all concepts, but with many redundant questions. Tools such as ICECAP-Supportive Care Measure and McGill Quality of Life had high relevance and low redundancy. CONCLUSION: Pertinent outcome concepts for these services and population are not well represented in commonly used outcome measurement tools, and this may have implications in appropriately measuring outcomes. This review and mapping method may have utility in fields where selecting appropriate outcome tools can be challenging.


Subject(s)
Advance Care Planning , Hospice and Palliative Care Nursing , Aged , Humans , Mental Health , Palliative Care , Quality of Life
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