Advancing Theoretical Understanding of Readiness and End-of-Life Preparedness in Adolescents Living with Advanced Cancer

Cynthia J. Bell, PhD, RNPostdoctoral Fellow,

Vanderbilt University School of Nursing

Victoria L. Champion, PhD, RN, FAANMary Margaret Walther Distinguished Professor

Indiana University

How beautifully leaves grow old. How full of light and color are their last days.

- John Burroughs, Naturalist

Description of the Problem

Each year in the United States 7000 adolescents (10-19yrs) 6800 young adults (20-24yrs) diagnosed with cancer One out of five adolescents with cancer will die

Psychological symptoms reported ~ adolescents at EOL (Sadness, Loss of perspective, Distress, Fear)

Clinical experts ~ adolescents unprepared for EOL

Insufficient research ~ adolescents at EOL

Albritton et al., 2006; Bleyer, 2005; Block, 2006; Bluebond-Langner, 1978; Brandon, 2007; Dunsmore & Quine, 1995; George & Hutton, 2003; Hinds, 2004; McGrath, 2001; Palmer, 2007; Penson et al., 2005; Steinhauser et al., 2000; Theunissen et al., 2007; U.S. Cancer Stats. 2009; Wolfe, 2004; Young, 2004

Cancer is the leading cause of death by disease (10-21yrs)

Study Purpose

Advance theoretical understanding of factors influencing two processes:

1. Readiness to engage in EOL discussions

2. EOL preparedness

Provide foundation for Adolescent EOL research

Improve QOL when curative treatment suspended

Analyze & ConcludePrepare, Collect & AnalyzeDefine & Design

Develop Theoretical Framework

Select Cases

Case # 1Time 1

Write case report

Draw Cross Case Conclusion

sC1T1 T2

C2T1 T2 Modify

TheoryWrite Final

ReportAdapted from Yin, 2003 Case Study Method

o

DesignStudy and

Data CollectionProcedure

Write case report

Draw within-case Conclusion

s

C1 T1

C1 T2

C2 T1

C2 T2

o

Single Case Reports

MultipleCross Case

Report

Case # 1Time 2

Case # 2Time 1

Case # 2Time 2

Write case report

Write case report

EOL Case Study Model

o

Readiness EOL Preparedness QOLCommunication

Time

Conceptual Model for Case Study Method

Bell & Champion, 2008

Data Collection: Multiple Sources

(1)Degner, Sloan, et al., 1997; (2)Zimet, et al., 1990 ; (3)Kaasa & Wessel, 2001 ; (4) Mack et al., 2008; (5)Steinhauser et al., 2004

Quantitative Measures

Control Preferences Scale1 ~ measure decisional control

MSPSS2 – Perceived Social Support ~ measure of social and family support

EFAT-23 ~ Screen Symptom Distress

PEACE4 ~ Acceptance

QUAL-E5 ~ Quality of Life

Knowledge Preference ~ amount and type of information shared by HCP

Willingness to take action ~ willingness to discuss concerns, emotions, disease progression

Self-report demographic sheet ~ adolescent self-report

Semi-Structured Interviews at Time One and Time Two

Direct Observation (Field Notes) at Time One and Time Two

Medical Record Review from 1st admission across time

Data Collection Table Example

Demographic Characteristics Case # ____________ ID # ____________

Current age  Sex  Education Last grade complete in school:

Current grade:Disease Status   Diagnosis Specific type of cancer: Stage: Date of diagnosis   Age at diagnosis   Original prognosis   Current prognosis   Length of cancer experience (measured from diagnosis to current time point) Date of stem cell transplant if

applicable 

Date of relapse(s) if applicable  

Date of remission if applicable  

Date of documentation of refractory disease if applicable

Treatment regimen Copy of treatment protocol: Yes___ No ___Any change in protocol: Yes ___ No ___

Global Question

“Would you please tell me what it is like to be 17 years old and living with advanced cancer?”

Semi-structured Interviews

CAN YOU TELL ME A LITTLE MORE ABOUT THE SERIOUSNESS OF YOUR CANCER AND WHETHER THAT HAS CHANGED OVER TIME?

“It hasn’t changed dramatically. It’s still the same size and they stopped it from growing but it’s still there. And they’re trying to figure out how to get rid of it. I think it’s getting better…just a little. It got better just a tiny bit. But it’s still better, so”.

Determining the Level of Awareness

Awareness: cognitive recognition of incurable prognosisCLOSED- SUSPECTED- MUTUAL PRETENSE-

OPEN

“That I’ll be sick the rest of my life, and not be able to take care of myself like I would like to. I want to have a family and kids and get out and mow the grass on Sundays and stuff like that. I guess my biggest worry is not being able to basically take care of myself when I get older because of the cancer”

Glaser and Strauss, 1965 Awareness of Dying; Bluebond-Langner, 1978 The Private Worlds of Dying Children

Example Data triangulation: examine convergence of evidence

Family and Other Social Support: Defined as adolescent’s perception of family and other sources of encouragement, support, and help during difficult times

Qualitative:“Yeah, it’s important to have somebody there for you cause I don’t think I would be able to make it if I didn’t have my grandma”

Medical Record Review:• Note in record “perceives less friend support”• Patient states “lonely and misses friends”

Quantitative MSPSS Family Subscale My family really tries to help me- 7 I get the emotional help & support I need from my family- 7 I can talk about my problems with my family- 6 My family is willing to help me make decisions- 7 Mean Score = 6.75

MSPSS Friends Subscale My friends really try to help me- 3 I can count on my friends when things go wrong- 4 I have friends with whom I can share my joys and sorrows- 4 I can talk about my problems with my friends- 4 Mean Score = 3.75

Social support

MSPSSMedicalRecord

Direct observation Interview

Findings

Non-linear Dynamic ~ changed within and across time

Awareness = influential factor in EOL discussions

Contextual Factors Noticeable change in condition Honest discussions about incurable prognosis with HCP

Closed

Suspected

Mutual Pretense

Open

Awareness:

Glaser and Strauss, 1965 Awareness of Dying; Bluebond-Langner, 1978 The Private Worlds of Dying Children

Awareness Changed across Time

“Not knowing if the chemo’s gonna work…not knowing how strong I’m gonna be when I wake up in the morning…not knowing if I’m gonna make it to college…not knowing if I’m gonna wake up at all really… It’s difficult not knowing.”

TIME 2

TIME 1

“Not knowing how much longer I will take the chemo…and not knowing when it’s going to be over and what it’s going to do to me in the future. Not knowing what’s going to happen”

“ I guess that helped me a little bit knowing that there is hope that something might work…there is hope that I can get better.”

“I’m scared. I don’t want my life to end…even though the doctors say they don’t know when it’s going to happen, it’s still a scary fact that you know, you actually know it’s going to happen…what scares me the most is leaving my family behind.”

“I keep telling myself there are people out there worse than me…and I know it’s hard but I have to keep trying and have to stay strong for me, my mom, my sister and I can’t give up yet…(pause)…well I won’t give up. There’s so much I want to do and there’s so much I know I can’t do but there’s so much stuff I still want to try…

Awareness Changed within Time Points

Awareness influenced EOL Discussions

Closed

Suspected

Mutual Pretense

Open

Awareness

Knowledge about EOL

Discussions with HCP

Identification of Meaning of Death & Spirituality

Acknowledgement of Grief & Emotions

Acceptance of Death& Incurable Prognosis

EOL Preparedness

AcceptanceStruggle to Accept

Uncertainty

Social Constraint versus Social Support

Social constraint“Sometimes I don’t like talking about my feelings with them because I could tell it gets them all worked up or depressed and they don’t like seeing me depressed. Or sometimes they don’t really want to talk about it because they don’t know what to say and it’s hard for them. So being hard for them to talk about it…makes it hard for me to talk about it, because I wouldn’t have the help, because it would be too sad for them”.

“…their body language…their facial expressions…You see sadness in their face…her eyes tell it all…”

Social support: “Talking about my feelings was helpful. Because there’s certain things that you want to talk about with people and you can’t talk about it, because you don’t know if they want to talk about it. But if someone is asking you those certain questions about those certain feelings, you know that they can handle talking to you about it. I felt a little better, you know, relieved or relaxed after talking about it”.

Revised Conceptual Model – Bell 2010

Live Life! Shoot for your Goals…

“And so you have to deal with… missing out on things, and not being able to do things. And the things that you want to do and you can do, you gotta try to shoot for it…and try to have as much fun as you can. ‘Cause those are some scary thoughts and you want to try to keep those off your mind by having as much fun as you can and

…shooting for your goals!”

Come Dance with Meby Cindy Bell

My life is a dance between living and dyingbetween knowing what is real and pretending it is notbetween accepting my destiny and rejecting my fatebetween celebrating the moments…

and grieving my time is running out

My life is a dance between Hoping and Believingthat my life actually does matter

I AM LIVING

Come dance with me

I would like to thank…

My Dissertation Committee:

Victoria Champion, PhD, RN, FAAN, Chair

Marion Broome , PhD, RN, FAAN

Rose Mays, PhD, RN, FAAN

Anna McDaniel , PhD, RN, FAAN

Greg Zimet, PhD

~ for their incredible insight and guidance.

And the adolescents who participated in this study:

~ for so generously sharing their time and stories.

I am forever changed.

Acknowledgements:

Mary Margaret Walther Program for Cancer Care Research/ BCOG

American Cancer Society DSCNR-06-206-03

Oncology Nursing Foundation Doctoral Scholarship

Research Incentive Fellowship, Indiana University School of Nursing