Preserving Compassionate End of Life Care in the Pandemic

NCT04602520 | Completed

• 1 other identifier: 3WPC19
• Study Type: observational
• Target: 118
• Locations: 1 country
• Sites: 1

Brief Summary

Compassionate and humanistic care for patients dying in the hospital has been especially challenging during the pandemic. Family presence is restricted, maximal barrier precautions are advised, and personal protective equipment must be preserved. This research examines the impact of adaptations to compassionate approaches to end of life care in a single center. The 3 Wishes Project (3WP) was created to promote the connections between patients, family members, and clinicians that are foundational to empathic end-of-life care. It provides a scaffold for discussions about preferences and values at the end of life and leads to acts of compassion that arise from soliciting and implementing wishes that honour the dying patient. It is partnered with the Footprints Project, which is an initiative encouraging staff to learn more about each patient. In a previous multi-center evaluation, the authors reported how the 3 Wishes Project is valuable, transferable, affordable and sustainable. During the pandemic, end of life care, facilitated by the 3 Wishes Project and Footprints Project, will be adapted to accommodate reduced family visiting and requirements to preserve PPE. The objective of this study is to evaluate whether the adapted 3 Wishes Project continues to be feasible and valuable during the pandemic, and determine how it influences the experiences of clinicians caring for patients dying during the pandemic.

Conditions

Death; Communication, Multidisciplinary; Empathy; Compassion; Family Members; Bereavement; Empowerment; Patient Engagement

Outcome Measures

Primary Outcomes (5)

• Perceptions and beliefs about value of the program

  Given the nascent knowledge of how the adaptations forced by the Covid-19 pandemic are perceived and experienced, it is important to understand clinician experiences of caring for dying patients during this time, and how adaptations are made to existing clinical programs designed to humanize end-of-life care. Accordingly, in this study investigators will solicit open-ended, qualitative perceptions of the value of the program. This information will be analyzed inductively to generate domains of value. Inductive analysis involves generation of categories and domains directly from the data, without pre-conceived notions of what these categories or domains might be. By generating understanding of the types of value clinicians see in this program, investigators will be able to devise ways to further refine the approach to end of life care and to measure this value in future research.

  Through study completion, an average of 1 year

• Feasibility of Enrolment as indicated by enrollment of 45 patients and successful adaptation of this approach to end of life care for all patients

  Enrolment will be deemed feasible when 45 patients have been enrolled and cared for with this personalized end of life care program.

  Through study completion, an average of 1 year

• Wish Implementation

  \> 3 wishes per patient are implemented; Higher proportion implemented by research and clinical staff collaboration than in pre-pandemic times.

  Through study completion for each patient, from enrollment to 1 month postmortem

• Wish Cost of less than $5/wish

  The $5/wish figure was established by this program in pre-pandemic times. It does not refer to patient compensation. Instead, it refers to the cost of running the intervention for each enrolled patient. Given the individually-adapted nature of this intervention, the costs will vary per participant. Affordability of the program to the unit running the program is an essential part of information collected in this program evaluation. Affordability will be informed by mean cost per wish and per patient at each center and overall. Also, investigators will perform a cost description of the project including both direct and indirect costs.

  Through study completion for each patient, from enrollment to 1 month postmortem

• Family visiting as proportion of patients who had a family member present at the end of life

  For patients who have family or friends who desire and are able to visit, what proportion visited either physically or virtually.

  Through enrollment to death for each patient.

Study Arms (1)

Dying patients

Behavioral: Focused end of life conversations to promote connections among patients, family members and clinicians. All eligible dying patients and families in the 3 participating acute care wards are invited to participate in wish elicitation and implementation. For clinician interviews, criterion sampling will be used, based on involvement in the care of enrolled dying patients. We will use qualitative and quantitative methods to collect and analyze data. Quantitative data will include characteristics of patients, families and clinicians. Qualitative data will be based on interviews. Pending the pandemic burden, and the status of their grief, family members of deceased patients may be invited for an interview later months after the death of their loved one.

Behavioral: 3 Wishes Project

Interventions

3 Wishes Project BEHAVIORAL

Behavioral: Focused conversations at end-of-life to promote the connections between patients, family members, and clinicians.

Dying patients

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Patients must be admitted into the Intensive Care Unit, the Medical Step-Down unit or the Covid-19 unit who are seriously ill and have a poor outcome (\>95% probability of dying during the admission). When death looms, people invariably interpret life through a lens of meaning - existential, spiritual, and relational. Through this lens, the 3 Wishes Project clearly facilitates holistic care, beyond the physical, to honor and celebrate a life. Staff are empowered and encouraged to sensitively elicit and then implementing at least 3 wishes from patients, family members, and/or clinicians caring for dying patients.

You may qualify if:

• \>18 years of age;
• \>95% of dying during the hospital stay as judged by the attending physician; or
• a decision has been made to withdraw or withhold life support in anticipation of death.
• \- Family member or friend of dying patient

You may not qualify if:

• Prohibitive logistical barriers (e.g., patient admitted for \<24 hours);
• Patient or family declines.
• N.B. A patient who has "no family" (even very broadly defined as friends and neighbours, or community members and case workers for homeless persons) would not be excluded from the wish elicitation and implementation component of the project.

Sponsors & Collaborators

• McMaster University: lead
• Canadian Institutes of Health Research (CIHR): collaborator

Study Sites (1)

St Joseph's Healthcare Hamilton

Hamilton, Ontario, L8N 4A6, Canada

Location

Related Publications (3)

• Dennis B, Vanstone M, Swinton M, Brandt Vegas D, Dionne JC, Cheung A, Clarke FJ, Hoad N, Boyle A, Huynh J, Toledo F, Soth M, Neville TH, Fiest K, Cook DJ. Sacrifice and solidarity: a qualitative study of family experiences of death and bereavement in critical care settings during the pandemic. BMJ Open. 2022 Jan 19;12(1):e058768. doi: 10.1136/bmjopen-2021-058768.

  PMID: 35046010 RESULT

• Cook DJ, Takaoka A, Hoad N, Swinton M, Clarke FJ, Rudkowski JC, Heels-Ansdell D, Boyle A, Toledo F, Dennis BB, Fiest K, Vanstone M. Clinician Perspectives on Caring for Dying Patients During the Pandemic : A Mixed-Methods Study. Ann Intern Med. 2021 Apr;174(4):493-500. doi: 10.7326/M20-6943. Epub 2020 Dec 8.

  PMID: 33284683 RESULT

• Elma A, Cook D, Howard M, Takaoka A, Hoad N, Swinton M, Clarke F, Rudkowski J, Boyle A, Dennis B, Vegas DB, Vanstone M. Use of Video Technology in End-of-Life Care for Hospitalized Patients During the COVID-19 Pandemic. Am J Crit Care. 2022 May 1;31(3):240-248. doi: 10.4037/ajcc2022722.

  PMID: 35118491 RESULT

MeSH Terms

Conditions

Death; Communication; Empowerment; Patient Participation

Condition Hierarchy (Ancestors)

Pathologic Processes; Pathological Conditions, Signs and Symptoms; Behavior; Social Behavior; Patient Acceptance of Health Care; Treatment Adherence and Compliance; Health Behavior

Study Officials

• Deborah Cook, MD MSc

  St. Joseph's Healthcare Hamilton

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: October 20, 2020
• First Posted: October 26, 2020
• Study Start: March 16, 2020
• Primary Completion: June 1, 2021
• Study Completion: August 1, 2021
• Last Updated: March 16, 2023

Record last verified: 2023-03

Data Sharing

• IPD Sharing: Will not share

Locations

CA (1)