Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC)

Although cancer in children is rare, it is the leading cause of death by disease past infancy among children in the United States. The National Cancer Institute estimates that 15,780 children and adolescents from birth to 19 years old will be diagnosed with cancer in 2014. The most common types of cancer diagnosed in children and adolescents are leukemia, brain and central nervous system tumors, lymphoma, rhabdomyosarcoma, neuroblastoma, Wilms tumor, bone cancer, and gonadal (testicular and ovarian) germ cell tumors. Despite an overall decrease in mortality rate from 5 per 100,000 children in 1975 to about 2.3 per 100,000 children in 2010, nearly 2,000 children die of cancer each year in the United States. The diagnosis of cancer in a child or teen is devastating to a family, creating an instant crisis that affects each member of the family unit. The child or teen with cancer becomes the major focus of family time and attention.  The 1990 Patient Self-Determination Act (PSDA) encourages persons of all ages-- including children and their parents-- to decide the type and extent of medical care they want to accept or refuse if they become unable to make those decisions due to illness. The PSDA requires all health care agencies to recognize the living will and durable power of attorney for health care. Early, advance care planning discussions can help the child and adolescent patients and their parents to make future health decisions together about treatment and palliative end-of-life care.

Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) is an intervention that helps adolescent and young adult cancer patients (aged 14-21 years) and their families engage in advance care planning discussions to prepare for future health care decisions, including end-of-life care. The intervention consists of three sessions delivered over 3 weeks by a certified facilitator to an adolescent or young adult patient and his or her parent or legal guardian (if the patient is younger than 18 years) or surrogate decision maker 21 years or older. 

FACE-TC sessions are approximately 60 minutes long and occur weekly in a hospital pediatric oncology inpatient unit, outpatient clinic, or the patient's home.

In session 1, the facilitator administers the Lyon Family-Centered Advance Care Planning Survey-- Adolescent and Surrogate version separately to the patient and surrogate. This 31-item survey assesses the patient's and surrogate's values, beliefs, and life experiences with illness and end-of-life care. The facilitator highlights similarities in patient and surrogate responses to build cohesion in decisions around medical care.

In session 2, the facilitator administers Respecting Choices® Next Steps Advance Care Planning interview tool, tailored for adolescents with cancer. The facilitator used a structured interview to elicit the patient's understanding of his or her medical condition, prognosis, and possible complications; explore the patient's philosophy regarding end-of-life decision making; review the rationale for future medical decisions; use a tool called the Statement of Treatment Preferences to encourage a discussion between the patient and surrogate about what actions should be taken in response to six adverse medical situations that could arise; promote understanding of the patient's goals and values with the surrogate; and address the need for future discussions as situations or preferences change. The facilitator also identifies any gaps in information or understanding that need to be addressed and makes any necessary support referrals. The Statement of Treatment Preference form with the patient's responses can be entered in the medical record as a form of advance directive.

In session 3, the patient completes Five Wishes©, a legal document that helps people express how they want to be treated if they become seriously ill and are unable to speak for themselves. For patients younger than 18 years, Five Wishes© is used as a tool to help them participate in shared decision-making with their parent or guardian, who signs the document to make it legally binding. The Five Wishes© document enables the patient to articulate who will make health care decisions for him or her, the kind of medical treatment the patient wants, how comfortable the patient wants to be, how the patient wants people to treat him or her, what the patient wants loved ones to know, and any spiritual or religious concerns. While FACE-TC used the Five Wishes, there would be an option to use the AD document used in the organization/community as an alternative.

Facilitators are certified through the Respecting Choices® competency-based Next Steps Advance Care Planning Facilitator course, which includes an online advance care planning curriculum and a 2-day, face-to-face training with validation of skills through the submission of a facilitator role-play video to ensure competency in intervention delivery. FACE-TC is based on an earlier intervention for youth (aged 14-21 years) with human immunodeficiency virus (HIV) and their families.

-- 9.4 hours for the Respecting Choices® Online ACP Facilitator Curriculum
-- 2-day FACE-TC Respecting Choices Next Steps ACP Facilitator Training                           
-- 1-day FACE-TC Facilitator Survey and Advance Directive Training
-- Three 60-minute weekly advance care planning discussion sessions
-- Three 15-minute post-session fidelity assessments by an independent supervisor on the quality of the facilitator's communication and patient's (and surrogate's) satisfaction with the session

The FACE-TC program targets adolescents and young adults (aged 14-21 years) with cancer and their families or adult surrogate decision makers.

The FACE-TC program is implemented in hospital-based inpatient pediatric oncology units, outpatient pediatric oncology clinics, or the patient's home.

Materials required for implementation include:

-- FACE-TC Training Manual
-- FACE-TC Training Manual Appendix

For costs associated with this program, please contact: Linda Briggs. (See products page on the EBCCP website for contact information).

A randomized controlled trial evaluated the effects of FACE-TC among 30 adolescent/young adult and parent/surrogate dyads. There were 126 dyads approached and 30 were randomized to either the intervention (17 dyads) or control group (13 dyads). The mean age of patients was 16.3 years; 60% were male, 50% White, 43% Black, and 7% Asian. Eighty-seven percent of surrogates were biological parents and female. Thirteen percent had incomes at or below the Federal poverty line, 73% had incomes above the Federal poverty line, and 13% failed to report household income. Forty-seven percent of the patients were diagnosed with leukemia, 27% with brain tumors, 20% with solid tumors, and 7% with lymphoma. Thirty-three percent had relapsed, 10% had not been undergoing therapy for longer than 4 years, and 73% were undergoing active treatment.

Potential participants receiving treatment in a university-based pediatric oncology program were identified with the help of oncology physicians and other providers. Research assistants approached the adolescent or family only after clearance with the treating physician. Patients who met the eligibility criteria (14-21 years of age, had an available legal guardian or family member, knew the diagnosis, had no developmental delays or impaired mental status) and were interested in participating after receiving information about the study were enrolled and further screened. Dyads were randomized to either the intervention group or a usual care control group. All study participants (intervention and control) received a brochure with information on advance care planning during the baseline assessment prior to randomization.

Both intervention and control dyads received a total of five visits. Intervention dyads were given a baseline assessment in week 1 of the study; one FACE-TC session per week in weeks 2-4, with an assessment after each session; and a 3-month follow-up assessment 4 months after study enrollment. Control dyads received the assessments only at the same five time points as intervention dyads.

This summary includes findings reported for the week 3 and 3-month follow-up assessments.

The study evaluated the following outcomes: (1) dyadic congruence (i.e., agreement between patient and surrogate) with respect to treatment preferences regarding six difficult cancer-specific situations likely to be encountered; (2) dyadic agreement with respect to limiting treatment in certain medical situations; (3) the patient's willingness to assign decision-making authority to the surrogate; (4) the patient's degree of uncertainty about the course of actions to take with regard to his or her treatment and end-of-life decisions; (5) joint patient and surrogate completion of a signed, advance directive document for the medical record; and (6) patient spiritual well-being.

The first two outcomes, dyadic congruence and agreement to limit treatment in certain medical situations, were assessed using the Statement of Treatment Preferences. Administered separately to patients and surrogates at week 3, this tool asks respondents how they would wish to respond to six adverse medical situations: (1) "Long hospital stay with many treatments and chance of surviving through this complication is low," (2) "Cancer has spread and treatments would extend my life by no more than 2 to 3 months, and the side effects of the treatment are serious," (3) "Functional impairment (e.g., can't walk or talk) and would need 24-hour nursing care," (4) "Mental disability (never know who I was or who I was with) and would need 24-hour nursing care," (5) "I want cardiopulmonary resuscitation attempted unless my physician determines any one of the following: I have an incurable illness or injury and am dying," and (6) "Mechanical ventilation." For each situation, respondents choose one of three options: "continue all treatment and...staying alive is most important", "stop all efforts to keep me alive...quality of life is more important than length of life", or "don't know." Dyadic congruence for each situation was measured as either a kappa correlation or percent agreement.

Patient willingness to assign decision-making authority to surrogates was assessed by a single item administered after the patient completed the Statement of Treatment Preferences. Patients were asked how strictly they wanted the surrogate to follow their stated wishes, using one of two response options: "strictly follow my wishes" or "do what the surrogate thinks is best at the time, knowing my wishes."

Patient uncertainty about the course of actions to take was measured using the Decisional Conflict Scale, 4th edition. Administered to patients at week 3, this scale includes five subscales: Uncertainty, Uninformed, Unclear Values, Unsupported, and Ineffective Choice. Sample items include: "I was aware of the choices I had to protect myself from unwanted treatments," "I felt I knew the benefits of the discussions regarding end-of-life treatments with my surrogate/proxy and health care provider," and "I felt I knew the risks and side effects of the life-sustaining treatments." Respondents rate each item using a 5-point Likert type scale from 1 (Strongly agree) to 5 (Strongly disagree). A total score and five subscale scores are generated by summing the score for each item and dividing by the number of items. A total score of 1 indicates low decisional conflict while a score of 5 indicates high decisional conflict. Lower subscale scores indicate a respondent feels more certain about end-of-life treatment choices, more informed about end-of-life decisions, more clear about end-of-life values and how these values are reflected in treatment choices, more supported around end-of-life treatment choices, and more effective in his or her decision-making ability around end-of-life treatment choices.

Completion of a signed advance directive was determined by checking patient medical records at 3-month follow-up for a copy of the Five Wishes document. This document is used to express treatment preferences and facilitate the participation of patients under the age of 18 years in medical treatment and end-of-life decisions. A parent or legal guardian must sign the document to make it legally binding.

Patient spiritual well-being was assessed using the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy Expanded (FACIT-Sp-Ex), Version 4. Administered to patients at baseline and 3-month follow-up, this includes 23 items such as "I feel hopeful," "I feel forgiven for any harm I may have ever caused," "I feel a sense of thankfulness for my life." It has two subscales: Meaning/Peace (for example, "I feel peaceful" and "I have a reason for living") and Faith (for example, "I find comfort/strength in my faith/spiritual beliefs" and "My illness has strengthened my faith or spiritual beliefs"). Respondents rate each item on a 5-point Likert-type scale from 0 (Not at all) to 4 (Very much). Ratings are summed across all 23 items. Higher FACIT-Sp-Ex scores indicate greater spiritual well-being.

There were no statistically significant differences in baseline characteristics between intervention and control dyads.

• At week 3, congruence (agreement) on treatment preference was higher for intervention dyads than for control dyads for situation 1, "Long hospital stay with many treatments and chance of surviving complication is low" (p=.001); situation 2, "Cancer has spread, treatment would not extend my life by more than 3 months, and the side effects of treatment are serious" (p=.002); situation 3, "Functional impairment such as not being able to walk or talk and would need 24-hour nursing care" (p<.001); and situation 6, "Mechanical ventilation" (p<.001).

• At week 3, a higher percentage of intervention dyads than control dyads chose to limit treatment for situation 2, "Cancer has spread, treatment would not extend my life by more than 3 months, and the side effects of treatment are serious" (p=.05), and for situation 3, "Functional impairment such as not being able to walk or talk and would need 24-hour nursing care" (p=.05).

• At week 3, a larger percentage of intervention than control patients endorsed the statement, "Do what you think is best at the time, considering my wishes" (100% vs. 62%, p=.009).

• At week 3, intervention patients had lower Uninformed subscale scores than control patients on the Decisional Conflict Scale, 4th edition, indicating they felt more informed about making end-of-life decisions than control patients (p=.007).

• At 3-month follow-up, a completed Five Wishes document was found in the medical records of all intervention patients but no control patients. (100% vs. 0%, p=0).

• At 3-month follow-up, intervention patients had higher total spiritual well-being scores on the FACT-Sp-Ex (Version 4) than control patients (p=.0296).

• At 3-month follow-up, intervention patients had higher scores on the Meaning/Peace subscale of the FACT-Sp-Ex (Version 4) than control patients (p=.0239).