Advance Care Planning and End-of-Life Decision Making in Dialysis: A Randomized Controlled Trial Targeting Patients and Their Surrogates

Mi Kyung Song, Sandra E. Ward, Jason P. Fine, Laura C. Hanson, Feng Chang Lin, Gerald A. Hladik, Jill B. Hamilton, Jessica C. Bridgman

Research output: Contribution to journalArticle

Abstract

Background Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. Study Design A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. Setting & Participants 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. Intervention Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. Outcomes & Measurements Primary outcomes: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. Secondary outcomes: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. Results Primary outcomes: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (β = 0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (β = -0.01; 95% CI, -0.12 to 0.10). Secondary outcomes: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (β = -1.13; 95% CI, -2.23 to -0.03), depression (β = -2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (β = -5.75; 95% CI, -10.9 to -0.64) than controls. Limitations Study was conducted in a single US region. Conclusions SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.

Original languageEnglish (US)
Pages (from-to)813-822
Number of pages10
JournalAmerican Journal of Kidney Diseases
Volume66
Issue number5
DOIs
StatePublished - Nov 1 2015

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Advance Care Planning
Dialysis
Decision Making
Randomized Controlled Trials
Bereavement
Anxiety
Patient Care Planning
Depression

Keywords

  • Advance care planning (ACP)
  • advanced kidney disease
  • bereavement
  • death
  • dyad congruence
  • emotional distress
  • end-of-life decision making
  • end-stage renal disease (ESRD)
  • hemodialysis
  • life-sustaining treatment
  • medical decision
  • patient education intervention
  • patient-surrogate dyad
  • randomized controlled trial (RCT)
  • surrogate decision maker
  • treatment options

ASJC Scopus subject areas

  • Nephrology
  • Medicine(all)

Cite this

Advance Care Planning and End-of-Life Decision Making in Dialysis : A Randomized Controlled Trial Targeting Patients and Their Surrogates. / Song, Mi Kyung; Ward, Sandra E.; Fine, Jason P.; Hanson, Laura C.; Lin, Feng Chang; Hladik, Gerald A.; Hamilton, Jill B.; Bridgman, Jessica C.

In: American Journal of Kidney Diseases, Vol. 66, No. 5, 01.11.2015, p. 813-822.

Research output: Contribution to journalArticle

Song, Mi Kyung ; Ward, Sandra E. ; Fine, Jason P. ; Hanson, Laura C. ; Lin, Feng Chang ; Hladik, Gerald A. ; Hamilton, Jill B. ; Bridgman, Jessica C. / Advance Care Planning and End-of-Life Decision Making in Dialysis : A Randomized Controlled Trial Targeting Patients and Their Surrogates. In: American Journal of Kidney Diseases. 2015 ; Vol. 66, No. 5. pp. 813-822.
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title = "Advance Care Planning and End-of-Life Decision Making in Dialysis: A Randomized Controlled Trial Targeting Patients and Their Surrogates",
abstract = "Background Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. Study Design A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. Setting & Participants 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. Intervention Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. Outcomes & Measurements Primary outcomes: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. Secondary outcomes: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. Results Primary outcomes: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95{\%} CI, 1.1-3.3), surrogate decision-making confidence (β = 0.13; 95{\%} CI, 0.01-0.24), and the composite (OR, 1.82; 95{\%} CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (β = -0.01; 95{\%} CI, -0.12 to 0.10). Secondary outcomes: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (β = -1.13; 95{\%} CI, -2.23 to -0.03), depression (β = -2.54; 95{\%} CI, -4.34 to -0.74), and posttraumatic distress (β = -5.75; 95{\%} CI, -10.9 to -0.64) than controls. Limitations Study was conducted in a single US region. Conclusions SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.",
keywords = "Advance care planning (ACP), advanced kidney disease, bereavement, death, dyad congruence, emotional distress, end-of-life decision making, end-stage renal disease (ESRD), hemodialysis, life-sustaining treatment, medical decision, patient education intervention, patient-surrogate dyad, randomized controlled trial (RCT), surrogate decision maker, treatment options",
author = "Song, {Mi Kyung} and Ward, {Sandra E.} and Fine, {Jason P.} and Hanson, {Laura C.} and Lin, {Feng Chang} and Hladik, {Gerald A.} and Hamilton, {Jill B.} and Bridgman, {Jessica C.}",
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T1 - Advance Care Planning and End-of-Life Decision Making in Dialysis

T2 - A Randomized Controlled Trial Targeting Patients and Their Surrogates

AU - Song, Mi Kyung

AU - Ward, Sandra E.

AU - Fine, Jason P.

AU - Hanson, Laura C.

AU - Lin, Feng Chang

AU - Hladik, Gerald A.

AU - Hamilton, Jill B.

AU - Bridgman, Jessica C.

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N2 - Background Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. Study Design A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. Setting & Participants 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. Intervention Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. Outcomes & Measurements Primary outcomes: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. Secondary outcomes: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. Results Primary outcomes: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (β = 0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (β = -0.01; 95% CI, -0.12 to 0.10). Secondary outcomes: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (β = -1.13; 95% CI, -2.23 to -0.03), depression (β = -2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (β = -5.75; 95% CI, -10.9 to -0.64) than controls. Limitations Study was conducted in a single US region. Conclusions SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.

AB - Background Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. Study Design A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. Setting & Participants 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. Intervention Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. Outcomes & Measurements Primary outcomes: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. Secondary outcomes: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. Results Primary outcomes: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (β = 0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (β = -0.01; 95% CI, -0.12 to 0.10). Secondary outcomes: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (β = -1.13; 95% CI, -2.23 to -0.03), depression (β = -2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (β = -5.75; 95% CI, -10.9 to -0.64) than controls. Limitations Study was conducted in a single US region. Conclusions SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.

KW - Advance care planning (ACP)

KW - advanced kidney disease

KW - bereavement

KW - death

KW - dyad congruence

KW - emotional distress

KW - end-of-life decision making

KW - end-stage renal disease (ESRD)

KW - hemodialysis

KW - life-sustaining treatment

KW - medical decision

KW - patient education intervention

KW - patient-surrogate dyad

KW - randomized controlled trial (RCT)

KW - surrogate decision maker

KW - treatment options

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