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Quality of Life Steering Council Bylaws

Article 1: Name and Description

The Quality of Life Steering Council (QoLSC) of St. Jude Children’s Research Hospital (SJCRH) shall consist of parents or caregivers of deceased SJCRH patients, who are at least eighteen (18) years of age and are at a minimum of two (2) years past the death of their child; and of current SJCRH staff members, under leadership from the Division of Palliative Care, and Family Centered Care Services.

Article 2: Mission

The QoLSC is committed to fostering the mutually beneficial partnership of patients, families and healthcare providers in creating informed, respectful, safe, and effective quality of care.

Article 3: Goals and Activities

The QoLSC will:

  • identify SJCRH family concerns and priorities
  • promote SJCRH family-centered care
  • offer input in planning QoL programs and policies and creating opportunities for improving patient satisfaction and quality of care at SJCRH
  • create educational and support resources for families and healthcare providers of SJCRH
  • serve on committees related to quality of life, end of life, grief and bereavement issues at SJCRH
  • respect and honor the unique contribution each SJCRH patient family makes based on their personal experiences and perspective

Article 4: Functions

  1. Members may be recommended by staff, a patient family member or self-referred. Only parents or caregivers of deceased patients meeting the stated criteria, or current St. Jude employees are eligible to serve on the QoLSC. Recommended candidates must complete the FCC application process and submit to the FCC Coordinator. The FCC Coordinator in conjunction with the Bereavement Coordinator and with input from the clinical staff will assess the applicant’s ability to effectively partner, collaborate, and work in a group successfully. 

    FCC applicants, if approved, will be known as advisors if they are chosen to serve on a committee, council, or in other roles that depend on a sustained partnership with staff.  A sustained partnership is defined as one where the outcome of the partnership is dependent on a series of interactions such as meetings. Once an applicant’s prescreening is complete, and the applicant is identified as a potential QoL adviser, the Bereavement Coordinator will continue the process up to extending an offer.

    Couples who become advisors have the option to join the QoLSC as a single member or as two individual members. When serving as a single member, only one of the individuals is required to attend a meeting and their combined attendance record will count towards the attendance requirements. Couples serving as a single member are both welcome to attend the meeting at any time; however, that will be counted as one attendance, and the couple will have one vote, and one travel reimbursement or airfare. Housing, meals and volunteer benefits will be provided to each individual.

    If the couple elects to join as two individual members, they will have individual responsibility to meet the attendance requirements, will have two votes, will have one or two travel reimbursements (based on the number of vehicles driven) or two airfares, and two stipends.

    A couple will need to state whether they will be joining as a single member or as two individual members by the second meeting after they are accepted as advisors.

    Couples may change from one option to the other once per calendar year beginning in January of each year.

  2. Members are expected to attend a minimum of 75% of scheduled QoLSC meetings per calendar year. Attendance can be in person or by participation via telephone or teleconference. Members may be considered for dismissal from QoLSC when they have missed two (2) or more meetings during a calendar year. Members are expected to notify the Bereavement Coordinator or the QoLSC Chairperson prior to a scheduled QoLSC meeting if the Member will miss a meeting.  Consistent attendance is also required for meetings associated with the QoLSC, such as subcommittee meetings.

    Guests may be invited, with prior approval by QoLSC Chairperson and Bereavement Coordinator to attend a QoLSC meeting but may be required to sign a HIPAA agreement prior to attending. Invited guests are not permitted to vote.

  3. Members may resign or request a leave of absence (LOA) from the QoLSC at any time during their term.  In order to request a LOA, the Member will submit his/her request in writing to the Chairperson of the QoLSC, stating the reason for the request and the length of time requested.

    If a Member cannot return at the end of the LOA, he/she will resign from the QoLSC. At any resignation, the QoLSC may choose to add a replacement Member at that time or to leave the position open until the next rotation of members.

  4. A member may be relieved of one’s duties from the QoLSC or as a FCC advisor after consideration and review by the QoLSC Chairperson, FCC Director, Director of Palliative Care, and the Bereavement Coordinator.

  5. The QoLSC Chairperson and the Bereavement Coordinator will compile the agenda for meetings of the QoLSC. Any Member who has an item for the agenda is encouraged to submit the idea, ideally two (2) weeks prior to the meeting date. The agenda will be sent out in a timely manner prior to the upcoming meeting to include the minutes from the previous meeting. Minutes are recorded at each meeting by the Bereavement Coordinator and/or the QoLSC Chairperson, assisted by the QoLSC members as requested.

  6. The QoLSC will consist of up to 12 voting Members (12 parents/couples- see Couples designations above) and 6 non-voting Members of staff.  A term of active membership on the QoLSC for a parent consists of one (1) year, renewable up to three (3) terms as long as the member is in good standing.  Upon serving three (3) terms, a Member will become eligible for membership on the QoLSC after a one (1) year hiatus and may serve for up to three (3) additional terms. If the QoLSC parent membership is below 9, the one year hiatus may be waived with the approval of the Bereavement Coordinator.  

    In the last quarter of each year, members will meet with the FCC leadership, the Bereavement Coordinator, and the QoLSC Chairperson to ensure commitment to the advisor role and to sign a letter of intent for the upcoming year. The letter of intent will outline the duties and attendance policy relative to the role(s) to which the Member participates. Ultimate decision of renewal for membership will be decided upon by the FCC Director, the Bereavement Coordinator, and the Director of the Palliative Care Division.

    QoLSC will recommend a Member for the office of Vice Chairperson each year.  Nominations for Vice Chairperson will occur in November and election will be conducted by Survey Monkey vote in December.  The nominee with the majority of votes will be recommended by the QoLSC for appointment as Vice Chairperson and, upon approval, will take office in January for a one (1) year term.  The ultimate decision for selection of Chairperson and Vice-Chairperson will be made by the FCC Director, the Director of the Division of Palliative Care, and the Bereavement Coordinator.  The following January, the Vice Chairperson will transition to the role of Chairperson and will serve a one (1) year term, as long as the Vice-Chairperson is in good standing. All parent members who have served on the Council for at least one year are eligible for nomination.  Past office holders are eligible to be nominated following two (2) years out of office.  A Member will give approval for his or her nomination and will have reviewed the duties of the office prior to being nominated.

    QoLSC staff members will be limited to a 2 year term, renewable upon reapplication and if the member is in good standing. The exception is Division of Palliative Care leadership, which are ongoing roles. 

  7. Chairperson will:

    • facilitate the QoLSC parent member’s review of the volunteer applications for an applicant to participate in FCC activities
    • prepare for and conduct QoLSC meetings, including compiling the agenda and review of the previous meeting’s minutes in coordination with Bereavement Coordinator
    • provide leadership for the QoLSC and serve as the spokesperson for the QoLSC
    • serve on SJCRH committees when the Chairperson is specifically requested

    Vice-Chairperson will:

    • serve as Chairperson elect and coordinate with the Chairperson to complete the role of the Chairperson as requested by the Bereavement Coordinator

    QoL Steering Council members will:

    • attend each QoLSC meeting or other designated meetings, either in person or by audio/video (WebEx) conferencing
    • engage respectively regarding the issues submitted for QoLSC review and provide meaningful feedback from a family perspective in meetings and via email (refer to QoL Steering Council Member role description)
    • participate in focus groups, committees, panel presentations and other QoLSC activities, to the extent of one’s experience and ability, to represent other families in similar settings and with similar experiences
    • suggest other family members for inclusion in FCC activities when one’s experiences are not such that the advisor can adequately represent other families

    Staff Council Members will:

    • advocate for and report on progress towards delivering family centered care especially as it relates to bereavement in their home department and institution wide, when the opportunity is available
    • participate on QoLSC standing committees: Recruitment/Outreach, Day of Remembrance, Mentoring/Education and Bereavement Support, and projects undertaken by the committees
    • suggest other staff for inclusion in QoLSC activities when one’s experiences are not such that the QoLSC staff member can adequately represent other families

    Bereavement Coordinator will:

    • assure the advisor onboarding process effectively supports the QoLSC advisors
    • attend and support the facilitation of each QoLSC meeting
    • report progress on ongoing projects and hospital changes that are of interest to families
    • support the QoLSC and parent advisors as they develop and implement their strategic plan for FCC
    • support the QoLSC in advocating for bereaved families and promoting family centered care at St. Jude and with outside organizations
    • serve as a link to FCC and hospital administration to communicate the suggestions and opportunities for partnering as generated by the QoLSC
    • work with the FAC Director to facilitate the budget in order to secure resources for QoLSC activities including meetings, training, and reimbursement for attendance
    • support the QoLSC in achieving its goals by removing or minimizing potential barriers
    • coordinate with FCC Director on activities such as scheduling, planning, and reporting as it relates to the QoLSC and/or the FAC.
  8. A meeting of the QoLSC will require the participation of a minimum of one-half (1/2) of the parent Members. Votes may be submitted electronically (yes, no, or abstain) except where specifically requested in writing to be in person.

  9. Members will be reimbursed for all reasonable travel costs (mileage reimbursement or air travel prepaid, SJCRH meal card, and lodging) paid in accordance with the SJCRH Travel Office and Patient Services departments’ policies.

Article 5: Confidentiality

Members agree to treat all information they receive related to their service on the QoLSC as confidential. Members must not discuss any personal or confidential information revealed during a QoLSC meeting outside their role as a QoLSC advisor. If a Member is asked to participate in any meeting or on a committee where identifiable patient information is presented or discussed, he/she will complete training necessary to engage in discussions of this level, including signing a confidentiality agreement.

Violation of confidentiality policies, including HIPAA standards (Health Insurance Portability and Accountability Act of 1996), will result in termination of QoLSC membership.

Confidentiality also applies to all social media, online and use of personal devices such as phones and laptops.

All methods of communication among FCC advisors, between advisors and St. Jude staff, and communications with other St. Jude families are expected to be safeguarded and appropriate.

Article 6: Amendment Procedure

Recommendations for amending these bylaws may occur at any meeting of the QoLSC by the affirmative vote of at least two-thirds of the Members present and voting. Amendment recommendations from the QoLSC will be taken under consideration by FCC and the leadership of the Division of QoL and Palliative Care and, if approved, will be presented to St. Jude leadership for approval as necessary. For actions required that are not in accordance with or addressed by the bylaws but are needed to assure the continuity of the family-centered care program, the FCC Director may make an alternate decision after consultation with the Bereavement Coordinator, the QoLSC Chairperson and the FCC Director’s supervisor, as needed.