Randomized controlled trials (RCTs) have rigorously examined the effectiveness of decision tools in supporting current treatment choices for individuals facing serious illnesses. A review of eleven RCTs 38–42,46–51 reveals valuable insights into how these Palliative Care Decision Tools impact patient knowledge, clinical communication, and treatment selections. Notably, almost all studies, with only one exception 49, demonstrated improvements in patient knowledge when decision tools were utilized, as detailed in Table 3. Furthermore, a subset of these tools 40,46,47 provided evidence of enhancing clinical communication and influencing the choice of treatments, underscoring their potential to optimize palliative care delivery.
Table 3.
RCTs of Decision Tools for Current Treatment
| Source | Study Population | Intervention and Control | Evidence of Effect on Patient-Centered Outcomes | Rating and Accessibility of the Toola |
|---|---|---|---|---|
| Clayton et aI,46 2007 | 174 Australian outpatientswith advanced cancerSeverity of illness: moderateto severe | Intervention: 16-page booklet “Asking Questions Can Help:An Aid for People Seeing the Palliative Care Team” with112 questions on end-of-life care that can be discussedwith a physicianControl: usual care | Moderate impactPatients in intervention group asked 2.31 times more questions (95% CI,1.68–3.18; P P = .002), and spent more time per visit (37.8 vs 30.5 min)No change in anxiety or information need at 3 wk | GRADE AFree online (http://www.psych.usyd.edu.au/cemped/docs/comms_Bookletl.pdf) |
| El-Jawahri et al,41 2010 | 50 Outpatients withmalignant gliomaSeverity of illness: moderate | Intervention: narrative about choice of 3 levels of medicalcare followed by a 6-min video depicting elements oflife-prolonging, limited care and comfort focusControl: narrative descriptions only | Lesser impactIncreased choice for comfort care (91% vs 22%; P | GRADE AClinicians may purchase online (http://www.acpdecisions.org/) |
| Epstein et al,39 2013 | 56 Ambulatory outpatientswith progressive pancreatic orhepatobiliary cancerSeverity of illness: severe | Intervention: 3-min video on CPR and MVControl: narrative description of CPR and MV | Lesser impactNo change in CPR or ventilator preferencesTrend in ACP documentation at 1 mo (40% vs 15%; P = .07)No change in CPR or MV knowledge | GRADEBClinicians may purchase online (http://www.acpdecisions.org/) |
| Hanson et al,40 2011 | 256 Patients in nursinghomes aged ≥65 y withadvanced dementiaSeverity of illness: severe | Intervention: audio or printed information on dementiaand feeding optionsControl: usual care | Moderate impactDecreased decisional conflict at 3 mo (DCS score, 1.65 vs 1.97; P Increased frequency of communication with health care practitionersat 3 mo (46%vs 33%; P= .04)Increase in use of dysphagia diet at 3 mo (89% vs 76%; P = .04) | GRADE AFree online (http://www.med.unc.edu/pcare/resources/feedingoptions) |
| Leighl et al,38 2011 | 207 Outpatients withmetastatic colorectal cancerin Canada and AustraliaSeverity of illness: moderateto severe | Intervention: booklet with video that reviews goals ofpalliative treatment with and without chemotherapyControl: usual care | Lesser impactNo change in choice to undergo chemotherapy at 1 to 2 wkNo change in decisional conflict or satisfactionGreater increase in knowledge (16% vs 5% increase; P | GRADE A Not available |
| Meropol et al,48 2013 | 743 Outpatients with knownmetastatic solid tumorsSeverity of illness: moderateto severe | Intervention: communication skills training in a 15-minonline module that addressed how to prepare for an initialoncology visit and what questions to askControl: link to the National Cancer Institute website | Lesser impactIncrease in overall satisfaction with communication at 3 moIncrease in ease of decision making (P (PNo change in decisional conflict | GRADEBNot available |
| Peele et al,47 2005 | 432 Outpatients with breastcancer s/p surgery andeligible for adjuvant therapySeverity of illness: moderate | Intervention: online tool estimating prognosis with andwithout adjuvant therapyControl: general informational pamphlet | Moderate impactDecreased choice of adjuvant therapy (P | GRADEBNot available |
| Stirling et al,49 2012 | 31 Community-dwellingcaregivers of patients withdementia in AustraliaSeverity of illness: moderate | Intervention: workbook with information aboutcommunity services for the elderly, respite care, andtrajectory of decline in dementiaControl: usual care | No impactNo change in decisional conflict, knowledge, or treatment preferences | GRADEBNot available |
| Vandemheen et al,50 2009 | 151 Outpatients in Canadaand United States with CFwith FEV1 Severity of illness: severe | Intervention: print and online aid on CF and lungtransplantControl: usual care | Lesser impactImproved knowledge (P P Reduced decisional conflict (DCS score, 11.6 vs 20.4; P = .0007)No change in transplant choice at 12 mo | GRADE AFree online (http://decisionaid.ohri.ca/docs/das/CF_Australia.pdf) |
| Volandes et al,42 2012 | 101 Patients aged ≥ 65 yearsnewly admitted to skillednursing facilities in BostonareaSeverity of illness: moderate | Intervention: narrative about 3 levels of medical care (lifeprolonging, limited care, and comfort focus) followed by a6-min video depicting theseControl: narrative descriptions only | Lesser impactIncreased choice for comfort care (80% vs 57% stated they would choosecomfort measures; P = .02) | GRADE AClinicians may purchase online (http://www.acpdecisions.org/) |
| Yun et al,51 2011 | 444 Caregivers of terminallyill patients with cancer inKoreaSeverity of illness: severe | Intervention: video “Patients Want to Know the Truth” withbooklet discussing disclosure of terminal status to patientsand intrafamily communicationControl: National Cancer Institute video and booklet oncancer pain management | Lesser impactNo change in decision to discuss terminal prognosisDecrease in decisional conflict initially (P = .008) and at 6 mo (P = .031)Decreased caregiver depression initially (P = .007) and at 6 mo (P = .008) | GRADE ANot available |
Table 3: Summary of Randomized Controlled Trials Evaluating Palliative Care Decision Tools for Current Treatment Decisions
Abbreviations: ACP, advance care planning; CF, cystic fibrosis; CPR, cardiopulmonary resuscitation; DCS, Decisional Conflict Scale; FEV,, forced expiratory volume in the first second of expiration; GRADE, Grading of Recommendations Assessment, Development, and Evaluation; MV, manual ventilation; RCT, randomized clinical trial; s/p, status post.
aGRADE ratings are explained in the Data Synthesis and Analysis subsection of the Methods section.
Impact on Advanced Cancer Care
A significant portion of the research on palliative care decision tools has focused on populations with advanced cancer. Seven of the reviewed studies 38,39,41,46–48,51 specifically involved patients with advanced cancer, highlighting the critical need for effective decision support in this patient group.
One notable high-quality study (GRADE A) by Clayton et al. 46 investigated the impact of a communication-prompting booklet on outpatients with advanced cancer. The booklet, designed to facilitate discussions about prognosis and palliative care options, led to a remarkable increase in patient engagement. Patients using the booklet asked over twice as many questions during their initial palliative care visits (2.31 times more questions; P < .001) and had longer visit durations, indicating a more in-depth and participatory consultation process.
Conversely, a study by Leighl et al. 38 assessed a brief 15-minute online module aimed at preparing patients with metastatic cancer for their initial oncology appointments. While this palliative care decision tool successfully increased patient satisfaction with communication (P = .03) and ease of decision-making (P < .001), it did not significantly alter decisional conflict or the choice to undergo palliative chemotherapy. This suggests that while the module improved the patient experience, it may not have been impactful enough to shift major treatment decisions in this specific context.
Yun et al.’s 51 large, high-quality (GRADE A) study explored the use of a booklet in assisting family members in making decisions about disclosing terminal status to Korean patients with cancer. Although the decision tool did not change the frequency of terminal prognosis discussions, it significantly reduced decisional conflict (P = .008) and caregiver depression (P = .007). Importantly, these positive effects were sustained at the 6-month follow-up (P = .03 and P = .008, respectively) demonstrating the lasting benefits of such palliative care decision tools on family well-being.
Peele et al.’s 47 intermediate-quality study (GRADE B) demonstrated that an online decision tool could effectively decrease the inclination towards adjuvant chemotherapy among breast cancer patients when medical benefits were limited (P < .05). Similarly, Meropol et al. 48 found that an online training module designed to prepare patients with advanced cancer for their first oncology visit improved patient satisfaction and ease of decision-making.
Video-Based Palliative Care Decision Tools
Two studies 39,41 specifically evaluated video-based palliative care decision tools for cancer patients. Epstein et al.’s 39 intermediate-quality study (GRADE B) assessed a brief 3-minute video on cardiopulmonary resuscitation (CPR) and mechanical ventilation in inpatients with late-stage gastrointestinal cancer. The study found no significant changes in CPR or ventilation preferences following the intervention. However, a trend towards increased advance care planning (ACP) documentation at 1 month was noted (40% vs 15%; P = .07).
In contrast, a high-quality study (GRADE A) by El-Jawahri et al. 41 examined a 6-minute video focusing on goals of care. This palliative care decision tool resulted in a substantial increase in the choice of comfort measures (91% vs 22%; P < .001). This finding was corroborated by Volandes et al. 42, who also tested a similar 6-minute video and observed a higher preference for comfort-oriented care among intervention participants (80% vs 57%; P = .02) in patients newly admitted to skilled nursing facilities. These studies highlight the potential of video-based tools to effectively communicate complex information and align care with patient values, particularly towards comfort care when appropriate.
Decision Tools for Dementia and Cystic Fibrosis
Beyond cancer care, palliative care decision tools have also been explored in other serious illnesses. Two studies 40,49 addressed patients with advanced dementia. Hanson et al.’s 40 high-quality study (GRADE A) found that a decision tool focused on feeding options for patients with advanced dementia in nursing homes significantly decreased decisional conflict (Decisional Conflict Scale 52 score, 1.65 vs 1.97; P < .05) and increased communication with healthcare practitioners (46% vs 33%; P = .04). Additionally, the use of dysphagia diets increased in the intervention group (89% vs 76%; P = .04). However, Stirling et al.’s 49 intermediate-quality Australian study (GRADE B) using a decision tool on supportive resources for dementia care found no significant impact on decisional conflict or treatment preferences.
Finally, Vandemheen et al.’s 50 high-quality study (GRADE A) investigated a decision tool for patients with cystic fibrosis considering lung transplantation. This tool effectively increased patient knowledge and realistic expectations while reducing decisional conflict (P < .0007). While it improved understanding and reduced decisional burden, it did not alter the choice to pursue transplantation at 12 months 50.
Conclusion
The evidence from these RCTs suggests that palliative care decision tools can be valuable assets in enhancing patient knowledge, improving communication, and influencing treatment choices in serious illnesses. While the impact varies across different tools and patient populations, the findings underscore the potential of these tools to facilitate more informed and patient-centered palliative care decisions. Further research should focus on refining these tools, identifying optimal implementation strategies, and exploring their long-term effects on patient outcomes and quality of life.
