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Cited by 37Palliative Care and End-of-Life IssuesPalliative and Oncologic CareEthics and bioethics in healthcare

The trial of ascertaining individual preferences for loved ones’ role in end-of-life decisions (TAILORED) study: a randomized controlled trial to improve surrogate decision making

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Sulmasy, Daniel P., Hughes, Mark T., Yenokyan, Gayane, Kub, Joan, Terry, Peter B., Astrow, Alan B., Johnson, Julie A., Ho, Grace +1 more·2017·Journal of Pain and Symptom Management
DOI 10.1016/j.jpainsymman.2017.07.004PMC PMC5632104
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Abstract

Context Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. Objectives To test the effectiveness of an intervention to help surrogate decision makers. Methods One hundred sixty-six patients (41% with amyotrophic lateral sclerosis and 59% with gastrointestinal cancers) and their surrogates at two university medical centers were randomized to an intensive nurse-directed discussion of the end-of-life decision control preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL); 163 completed baseline interviews and underwent the intervention. Results Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, that is, a balance of their own wishes and what the surrogate thinks best (adjusted odds compared with baseline for patients = 1.78, P = 0.04; adjusted odds for surrogates = 2.05, P = 0.03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (P = 0.08), and CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, P = 0.28). Stress levels decreased for TAILORED surrogates (impact of events scale = 23.1 ± 14.6 baseline, 20.8 ± 15.3 f/u, P = 0.046), but not for CONTROL (P = 0.85), and post-intervention stress was lower for TAILORED than CONTROL (P = 0.04). Surrogates' confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5 ± 6.5 to 14.7 ± 8.1 for TAILORED (P < 0.01), while not changing for CONTROL, yet satisfaction with involvement in decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, P = 0.03). Conclusion TAILORED patients and surrogates who completed the study adopted a more mutual decision-making style, balancing their own wishes with what the surrogate thinks would be best for them. Surrogates reported less stress and more satisfaction. Confidence was high at baseline and did not change. There was a modest increase in caregiver burden. These findings suggest that interventions like TAILORED might positively impact surrogate decision making.

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  • Increases in DNACPR decisions and especially use of blanket CPR exclusion criteria such as age may introduce selection bias and hamper the generalisability of the research results, as well as their applicability to normal conditions.

    “Lastly, increases in DNACPR decisions and especially use of blanket CPR exclusion criteria such as age 87,88,385,390,393 may introduce selection bias and hamper the generalisability of the research results, as well as their applicability to normal conditions.”

    From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [87]

    The Discussion’s Limitations section questions whether findings from patients with GI cancer or ALS would apply to other terminal conditions, but it does not link generalisability to DNACPR decisions or CPR exclusion criteria. Searches for age-based CPR exclusions and selection bias found no passage addressing that claim in our copy. (LLM, conf=0.75)

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Authors
Sulmasy, D. P., Hughes, M. T., Yenokyan, G., Kub, J., Terry, P. B., Astrow, A. B., Johnson, J. A., Ho, G., & Nolan, M. T.
Affiliations
  • Georgetown University (US)
  • Johns Hopkins University (US)
  • Cornell University (US)
  • University of Chicago (US)
Corresponding author
Sulmasy, Daniel P.
ORCID
Venue
Journal of Pain and Symptom Management
Publisher
Elsevier BV
Published
2017-10
Volume
54
Issue
4
Pages
455-465
ISSN
0885-3924 (ISSN-L)
DOI
10.1016/j.jpainsymman.2017.07.004
PMC
PMC5632104
OpenAlex
W2735276853
Cited by
37
References
46
Citations by year
2026: 2 · 2025: 2 · 2024: 3 · 2023: 5 · 2022: 6 · 2021: 6 · 2020: 5 · 2019: 6 · 2018: 2
FWCI
3.34
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Pain and Symptom Management (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • PubMed Central (acceptedVersion)
Funders
National Institute of Nursing Research (R01NR010733)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
Keywords
surrogate decision-making, end-of-life decisions, substituted judgment, amyotrophic lateral sclerosis, gastrointestinal cancer, terminal illness, caregiver burden, family involvement in care planning, advance care planning, palliative care, shared decision-making
MeSH terms
Amyotrophic Lateral Sclerosis, Decision Making, Female, Follow-Up Studies, Gastrointestinal Neoplasms, Humans, Male, Middle Aged, Nurses, Stress, Psychological, Terminal Care, Treatment Outcome, Caregivers, Proxy, Self Efficacy, Patient Preference, Health Communication

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