Download Caroline Vonasek

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
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.
“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”
 “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
 Asked
the following questions in a semistructured 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?



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 patient spoke about negative aspects of false hope


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”.
“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”
“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.
 “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?
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.”
 Conclusions



Hope is complex
Parents and healthcare workers approach hope
differently
Parents viewed hope as selfish if their child was
facing prolonged painful interventions
“Hope is the thing with feathers”
A poem by Emily Dickinson
“With Hope”
A song by Steven Curtis Chapman
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.
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.

Disclaimer: This song has a religious undertone and talks about God.
http://www.youtube.com/watch?v=5oiIX9hl9gg
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
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.
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.
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.
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.
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.
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.
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.
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.
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!!!
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.ht
ml
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.