Beautiful Question Project Philosophy 103, Spring ‘13 Caroline Vonasek

1. What role does hope play in people, and their families, who are diagnosed with a life-threatening or terminal illness? Hope (noun): the feeling that what is wanted can be had or that events will turn out for the best Hope (verb): to look forward to with desire and reasonable confidence; to believe, desire, or trust Beautiful Question Project Philosophy 103, Spring ‘13 Caroline Vonasek

2. Why hope? I chose to investigate this question because of my personal experiences. As a nursing student, I have seen many patients who are either diagnosed with a life-threatening or terminal illness. It has always fascinated me how those people can continue to be positive in the face of what could possibly be death. They always had hope, even if their family, doctors, and nurses did not. The second reason why I chose a question about hope is a personal one. My sister was diagnosed with ovarian cancer 2 years ago at age 18. It was the power of hope that held my family together during that time. In the following presentation, I will use academic journals, pop culture resources, and interviews to answer the question.

3. Science’s view on hope “On Sinking and Swimming: The Dialectic of Hope, Hopelessness, and Acceptance in Terminal Cancer” “Until the Last Breath: Exploring the Concept of Hope for Parents and Health Care Professionals During a Child’s Serious Illness”

4. On Sinking And Swimming • “Hope and hopelessness have been identified as significantly related to quality of life for patients with terminal cancer.” • The study used interviews with terminal cancer patients • Information collected was used to develop a measurement of hopelessness • 30 patients with stage IV cancer and a life expectancy of less than one year were involved in the study

5. On Sinking And Swimming • Asked the following questions in a semi-structured interview with a psychologist Table 1. Interview Questions. 1. On a scale from 0 to 10, 0 being not hopeless at all and 10 being completely hopeless, how hopeless do you feel right now? 2. What were you thinking about when you came up with that number? What came to mind? 3. On a scale from 0 to 10, 0 having no hope at all and 10 being completely filled with hope, how hopeful do you feel right now? 4. What were you thinking about when you came up with that number? What came to mind? 5. Have there been times more recently or in the past where you felt extremely hopeless? What was that like? 6. What were your thoughts and feelings at the time? How long did it last? Did it come and go or did you feel that way all the time? 7. What changed to make you feel more hopeful or less hopeless? 8. At this point, are there specific things you are feeling very hopeful about? 9. Are there specific things you are feeling particularly hopeless about or given up hoping for? Which of these is the most distressing or most important to you? 10. Do you have specific plans or goals that you want to accomplish? 11. How has your illness changed your goals and plans for the future? 12. What are the things that concern or worry you the most about the future?

6. On Sinking And Swimming • Results showed that patients indicated experiencing hope and hopelessness as closely linked • Provided the information that, “hope becomes relevant when the threat of despair or hopelessness is introduced” • Found that experience of hope or hopelessness balanced on ACCEPTANCE • One participant stated, “I accept what is. If I go, I go. If I live, if I can get around and do things again, that’s the best thing I could ever look forward to”. • One patient spoke about negative aspects of false hope • “I think there are so many ifs in this disease and so many things can go wrong…so you cannot be too hopeful, you know, so you kind of have to be realistic…If you are too hopeful, you might get disappointed, you know?” • Acceptance means a realistic understanding of the prognosis and a willingness to let go of “inflexible or unrealistic hopes”

7. On Sinking And Swimming “I am hopeful for each day, you know. I mean I know I am not going to be cured, there is no cure, but I am hopeful that I have as wonderful a time as possible.” – A participant in the study To me, this means that hope in terminal cancer doesn’t always have to mean being able to survive. It means hoping to spend the rest of your days the way you want.

8. Until the Last Breath • “Bereaved parents express maintaining hope as an important factor in how they coped with their child’s illness.” • Purpose of the study was to investigate the concept of hope and how it effects parents’ coping and medical decision making • Focus groups were held with bereaved parents and health care professionals Table 1. Questions for Focus Group Sessions • How do you define hope? • What role did hope play in making decisions for your child/providing care for your patient? • How important is hope in coping with your child’s/patient’s illness? • How did hope change over the course of the illness?

9. Until the Last Breath • 2 themes emerged about the role of hope in decision making • Balancing hope with accepting the reality of the prognosis • Balancing hope without prolonging the patient’s suffering • “You hope that he gets better and you pray that they do the next step and then you realize that a lot of that is you selfishly wanting him to be here or wanting your child to make it no matter what, . . . So it’s not giving up hope, it’s getting to that place where you know you’re praying for them to be there selfishly and their life wouldn’t be right just to stay here for you.” • All participants noted that hope changes of the course of the illness • “Hope changed from earthly hope to a heavenly hope when my daughter says she was going to heaven and at that time she would have new legs and she would dance.”

10. Until the Last Breath • Conclusions • Hope is complex • Parents and healthcare workers approach hope differently • Parents viewed hope as selfish if their child was facing prolonged painful interventions

11. A Pop Culture View On Hope “Hope is the thing with feathers” A poem by Emily Dickinson “With Hope” A song by Steven Curtis Chapman

12. “Hope is the thing with feathers”Emily dickinson Hope is the thing with feathers That perches in the soul, And sings the tune without the words, And never stops at all, And the sweetest in the gale is heard; And sore must be the storm That could abash the little bird That kept so many warm. I’ve heard it in the chillest land, And on the strangest sea; Yet never, in extremity, It asked a crumb of me.

13. “Hope is the thing with feathers”Emily dickinson I don’t know what Emily Dickinson’s purpose was for writing this poem. But when reading it, I feel a sense of comfort. I think that a lot of people who are going through a serious illness can find comfort in this too. The most profound part of the poem for me is the line, “and sings the tune without words, and never stops at all”. Hope is never giving up. Hope is determination. Hope can always be found somewhere, if you are looking for it.

14. “With hope”Steven Curtis Chapman • Disclaimer: This song has a religious undertone and talks about God. LYRICS This is not at all How we thought it was supposed to be We had so many plans for you We has so many dreams But now you've gone away And left us with the memories of your smile And nothing we can say And nothing we can do Can take away the pain The pain of losing you And we can cry with hope We can say good-bye with hope 'Cause we know our good-bye is not the end And we can grieve with hope 'Cause we believe with hope There's a place where we'll see your face again We'll see your face again And never have I known Anything so hard to understand And never have I questioned more The wisdom of God's plan But through the cloud of tears I see the Father smile and say 'well done.‘ And I imagine you Where you wanted most to be Seeing all your dreams come true 'Cause now your home And now you’re free[Chorus] We have this hope as an anchor 'Cause we believe that everything God promised us is true[Chorus] We wait with hope And we ache with hope We hold on with hope We let go with hope http://www.youtube.com/watch?v=5oiIX9hl9gg

15. “With hope”Steven Curtis Chapman Steven Curtis Chapman wrote this song after a tragic accident took the life of his young daughter. This is an interesting song because it speaks of having hope even after the loss of a loved one. When someone dies, their family is usually left reeling with grief. One of the most common ways that people cope with this profound sadness is through hope. They hope that their loved one is in a better place. They hope that their loved one has escaped the pain that their illness brought upon them. They hope that they will be reunited with their loved one again.

16. A Personal Story About Hope Including interviews with my sister, a cancer survivor. Hailey, mom, and I at the “Hope for a Cure” Ovarian Cancer Benefit Concert that my sister coordinated.

17. Hailey’s story In the spring of Hailey’s senior year of high school, she was diagnosed with Sertoli-Leydig ovarian cancer (SLCT). According to statistics, most of the Sertoli-Leydig tumors are benign. 25% are malignant, and the prognosis is poor. My sister’s tumor was malignant. Ovarian cancer usually occurs in women over the age of 60. SLCT composes less than 0.5% of all types of ovarian cancer. She was told that only about 25 women had been treated for it in the past ten years, and every doctor she saw had a different opinion of what should be done. The truth was, no one really knew how to treat her illness. One thing they did know was that 2/3 cases recur within the first year. It wouldn’t be until five years that she would really be considered “in the clear”. She was immediately started on 12 weeks of chemotherapy treatment.

18. The interview Me: How did you feel the moment after the doctor told you that your tumor was malignant and you had cancer? Hailey: I was in complete and utter shock. For two weeks after my surgery [to remove the tumor] they had been telling me that it was looking like it was benign. I had pretty much had that in my head. And then when I was told that it was malignant, I actually at first said, “so that is good right?”, because I just so wanted to believe that I was OK. And then when the doctor shook his head, I just started to cry. And I cried in the car in the parking lot. And I cried on the kitchen floor. Mom said it sounded like the sobs that come from parents when they find out their child has died. It was an awful, awful night. Me: When did you feel like you moved past the grief and started to accept it? And how did you do that? Hailey: I realized a week before my first chemo treatment that I had no other option except to just get through it so I could move on with my life -- graduate, move into college that fall.

19. The interview Me: Would you say that hope played a role in overcoming the cancer? Hailey: Yes. I mean when you’re at that point and not sure if you are going to live or die, there’s not much else that you can do except have hope. It’s either have hope or be hopeless. And I did not want to die a hopeless person. Me: Where did you find hope? Hailey: A lot of places. Some of them were realistic, others were probably just a coincidence. Me: What do you mean? Hailey: Well I looked at you and our family and saw how scared you all were. I realized that I was the one who had to have hope and be strong. It’s strange because you would think it’d be the other way around. But I always found myself being the positive one, reassuring mom and you that I was going to be OK. That I had hope to get me through. And I guess the second time that I really found hope in the situation was at my first chemo treatment. Our family friend was telling me the story about how when his mom died from breast cancer she said whenever they saw a lady bug to think of her. Not even twenty minutes later, I went outside to just get out of the cancer center for a couple of minutes, and a lady bug landed right on my chemo pole. I just knew that was my sign. My sign to not give up hope. To keep fighting.

20. The interview Me: Was there ever a time when you felt like hope did you wrong? That it led you down a deceiving path? Hailey: I never felt like that when I had cancer. I was lucky enough to beat it. And almost two years into remission and I’m still healthy. But I can see where hope can be detrimental sometimes. Me: In what sense? Hailey: Well, I became very close with another girl when I was going through treatment because she too had been going through chemotherapy and radiation. We just kind of relied on each other to be strong for each other. I guess she was another source of hope for me. Anyway, we both got better, and we continued to be friends and hang out. It was like our own little therapy sessions when we talked because as much as other people think they know what it’s like, no one else knows how it feels to have cancer. She was healthy for a while, and I just relied on my hope in her health. I assumed she was going to be OK. But she wasn’t. She died in December. And I was wrecked by it. I had lost my best friend, the only person who really understood me. And I felt like it was my fault that I was so upset – I should have known this would happen. I shouldn’t have been so hopeful. I should have prepared myself. For three months I thought those things every day.

21. The interview Me: So how did you cope with that? Or did you at all? Hailey: It’s been a process. I will always miss her. I will always feel like I was naïve for thinking that she would always be there. But I can’t blame that on hope. Because that’s what got me through my illness. I cope with it by thinking, would I rather have been hopeful that she would be OK and not dwell on her illness, or would I rather have been hopeless and negative. How did I want people to feel when I was going through treatment? I wanted them to have hope. So I feel like if I hadn’t been hopeful for her, it would have made me a bad friend. I wouldn’t have felt like I was supporting her. So yes, hope can be bad sometimes. It can blind you from the reality. But I know that the benefits of having hope will outweigh the consequences every single time. Because hope is something that can’t be taken away from you. You have to choose to let it go. And to this day, I choose to keep it. To always have hope.

22. My Thoughts & Reflections

23. My Thoughts & Reflections I think that I did find a final answer to my question about hope. I can confidently say that I think hope is a necessary part of our lives, not only when we are facing a terminal illness. We need hope to get through the difficult times. However, it is important that we don’t have false hope. One of my favorite parts of this project was reading the two research studies about hope in terminal illness. I especially liked it because each came from a different perspective – one from the patient and the other from the family members (parents). However, both articles came to the conclusion that hope is good, as long as it is realistic. Having hope when facing a terminal illness doesn’t always have to mean that someone will miraculously get better. In fact, if an illness is deemed “terminal”, that rarely happens. In these instances hope should be tailored more towards attainable goals like, “I hope that I live long enough to see my daughter getting married”, or “I hope that my child will die peacefully and not in pain”. Hope is necessary because it gives us a sense of comfort. Hope brings us the time and place of realizing it is OK to die or to let a loved one die. Like in the Emily Dickinson poem and the Steven Curtis Chapman song, even if everything doesn’t turn out the way we want, hope allows us to feel comforted. We hope that we will see our loved ones again someday. We hope that they are in a better place.

24. Hope Is All Around Us One of the most important things I realized through this project is that HOPE is necessary in our daily lives too! The interview with my sister Hailey really made me think. She continues to have hope every day, even though she lost a best friend to the illness that could have killed her. But she knows that hope is a good thing because even if we aren’t faced with disease and illness, we use hope. It keeps us moving forward! We HOPE that we will graduate college and get a good job that will make us happy. We HOPE that we are making our parents proud. We HOPE that we are setting good examples for our sisters, brothers, cousins. We HOPE that we have become the people we were meant to be. We need HOPE to survive!!!

25. Bibliography Chapman, S.C. (1999). With hope [Recorded by Steven Curtis Chapman]. On Speechless [CD]. Sparrow Records. Dickinson, E. “Hope is the thing with feathers”. Retrieved from http://academic.brooklyn.cuny.edu/english/melani/cs6/hope.html Reder E., Serwint JR. Until the Last Breath: Exploring the Concept of Hope for Parents and Health Care Professionals During a Child's Serious Illness. Arch Pediatr Adolesc Med. 2009;163(7):653-657. doi:10.1001/archpediatrics.2009.87. Sachs, E., Kolva, E., Pessin, H., Rosenfeld, B., Breitbard, W. (2012). On sinking and swimming: the dialect of hope, hopelessness, and acceptance in terminal cancer. American Journal of Hospice and Palliative Care, 30(2). Retrieved from http://ajh.sagepub.com/content/30/2/121. Interview with Hailey Vonasek on April 6th, 2013 via telephone call.