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Running Head: DISCLOSURE OF ACCURATE PROGNOSIS

Disclosure of Accurate Prognosis in End Stage Cancer


Lilia Murashov
Western Washington University

DISCLOSURE OF ACCURATE PROGNOSIS

Importance of Accurate Prognosis in End Stage Cancer


Our 70-year-old neighbor, who immigrated from China twenty years ago, was diagnosed
with kidney cancer that had metastasized to other organs. When the family learned of this mans
poor prognosis, they requested that my neighbor should not be informed of his terminal
condition. Instead, they asked a doctor to tell his patient that he had pneumonia. The doctor had
difficulty respecting the familys request. As a result, an argument followed and mistrust
developed. Sadly, the mistrust developed not just between the hospitals care team and the
family, but also between the patient and his loved ones. He shared with me his pain and
disappointment. He worked very hard all his life, just retired, and was planning to travel. If I
only knew that I have a terminal illness, I could go back home and see my siblings one more
time, and now I feel so fatigued and wont be able to fly for twelve straight hours, he shared
with me. He was so upset that he wanted to remove his daughters name from his will. I know
that his daughter had a good intention to help her father, but lack of knowledge and cultural
beliefs were obstacles in her decision-making process. Hearing the accurate diagnosis, trusting in
the care team, accessing available resources and getting family support will improve a patients
ability to effectively plan for end of life.
Process
From working as a medical interpreter and nurse and talking to oncology nurses, I
learned that the example of my neighbor is not its own unique story; it happens quite often
everywhere. Was it more compassionate to this man to withhold upsetting information about his
disease or to give him the comfort of knowing the truth and making his own decision? The issue
is determining what will cause more psychological distress: being informed of the diagnosis or
remaining with stressful doubts by not being informed? These questions prompted me to

DISCLOSURE OF ACCURATE PROGNOSIS

research whether or not it is beneficial for critical or terminally ill patients to be given an honest
diagnosis. I was able to find very useful peer reviewed articles on the Western Library website.
First I tried to search by typing a question, Should doctor tell the truth and cancer. My
second search was: Benefits of telling the truth and cancer. As a result, similar articles came
out, and I used the most recent ones, published in the last five years, and those that were
available.
Literature Review
Truth telling to terminally ill patients is a common ethical dilemma in every country of
the world: to inform or not to inform, is the key question. Healthcare professionals are the ones
who have the responsibility to break bad news to patients and their loved ones, and very often
these professionals do not feel comfortable or have little to no experience delivering bad news.
We learned from a film Being Mortal (Gawande and Jennings, 2015) that doctors are trained to
fight and may feel like a failure when they have to admit that nothing else can be done for a
patient. Doctor Aymen Elfiky shares, This is the way we are wired and we are not trained for
that other mode. Physicians are not ready to accept that sometimes there are unfixable
problems (Gawande & Jennings, 2015).
In the medical and nursing schools, physicians and nurses are taught how to treat patients,
but not how to help them to die. Most doctors are uncomfortable discussing the diagnosis and
prognosis, but are willing to talk about the end of life treatment and remission of cancer
(Konstantis and Exiara, 2015). Shahidi (2010) agrees that physicians do not feel comfortable
taking away too much hope from patients (p. 591). She adds: Talking about the incurability of
a condition or probability of death is particularly difficult in cultures with strong religious beliefs
that God is able to do anything and to cure any disease (p. 591). It is challenging for healthcare

DISCLOSURE OF ACCURATE PROGNOSIS

professionals to present a prognosis that contradicts the patients religious beliefs and therefore
diminishes their hope for survival. Another interesting point that Shahidi (2010) observes that
one more environment a physician would not tell the truth regarding a cancer diagnosis is in
private hospitals or clinics where service satisfaction for their clients is a priority (p. 591).
Sometimes families will ask the care team to withhold a terminal diagnosis or prognosis
from the patient for many reasons. The study by Konstantis and Exiara (2015) shows that often
doctors prefer to share information with relatives instead of the patient (p. 37). Health care
professionals should also remember that some cultures have different beliefs about personal
autonomy and death (Kazdaglis et al., 2010, p. 443). For example, a study by Wang, Peng, Guo
and Su (2012) in northern China found that the family members preference is often not to
disclose the diagnosis (p.1093). Families explain that they want to spare their loved one the
painful experience of hearing difficult facts. The question is: Does this help the patient or hurt
him or her even more? Smith and Hillner (2010) argue: If patients do not know the prognosis,
they cannot plan (p. 5983). A familys fears are usually unsupported, and a thoughtful
discussion and explanation will help relieve these concerns for the family members as well as
encourage them to help the patient with planning.
Patients trust
Disclosing the diagnosis of terminal illness, like cancer, is devastating for patients.
Kazdaglis et al. (2010) observes that Two main issues are presented for patients: first the
response to the stressful event of learning the truth and, second, adaptation to the knowledge of a
future with a chronic or even terminal disease (p. 444). In his book Gawande (2014) shares that
two kinds of courage that are required in sickness: The first is the courage to confront the reality
of mortality the courage to seek out the truth of what is to be feared and what is to be hoped.

DISCLOSURE OF ACCURATE PROGNOSIS

even more daunting is the second kind of courage the courage to act on the truth we find
(p.355).
Every patient needs an explanation of his illness that will be understandable. Language
barriers may dramatically reduce the effectiveness of delivering the information. In the
cardiology office we see a lot of patients who bring their relatives to interpret, and sometimes I
wonder how much accurate information my patient receives. Sometimes it sounds like the
relative or friend filters the material we are presenting. In the situation of discussing end stage
cancer in an oncology office, certified interpreters should be available for the provider and
patient. First and foremost its important that you ask what their understanding is of their
disease, says Kathy Selvaggi in her interview with Atul Gawande, because often time what we
say as physicians is not what the patient hears, (Gawande, 2014). Smith and Hillner agree that
even if the oncologist tells them, some patients will choose not to believe the information, or
interpret it as not applying to them (p. 5982). Shahidi (2010) suggests, To establish good
communication with the patient, the doctor should find a balance between his or her medical
knowledge and patients needs, preferences and beliefs (p. 592). When physicians
communicate with patients, being honest is an important way to foster trust and show respect.
Smith and Hillner (2010) state: giving honest information is the right ethical, medical
and legal course for patients who want the information (p. 5983). Being diagnosed with a
terminal illness is a critical time for patients. During this time it is important for them to discuss
with close family members some difficult issues, such as how and where they want to spend their
last days. According to Smith and Hillner (2010) many people use this time to plan for events to
spend with their families, address spiritual or financial issues, or write a living will (p. 5985).
Gawande in his book Being Mortal states, Lacking a coherent view of how people might live

DISCLOSURE OF ACCURATE PROGNOSIS

successfully all the way to their very end, we have allowed our fates to be controlled by the
imperatives of medicine, technology, and strangers (p. 24).
Quantity or Quality of Life?
My mothers physician told me that if she were his mom, he would not recommend any
chemotherapy, because it will just extend her suffering. Instead, he suggested contacting hospice
care. An enormous amount of dollars are spent on patients in their final months on Earth, as an
effort to prevent death, but not to restore quality of life. Smith and Hillner (2010) recommend
rather than do n-th line chemotherapy help the patient to enroll in hospice care. It will also
help save money for society (p. 5984). They continue: For many patients, continuing
chemotherapy when activities of daily living are compromised is a mistake that directs limited
time and energy to an unwinnable battle against the cancer, when time and energy should be
directed at life transition planning (p. 5984).
In his book Gawande describes individual cases in which patients with a terminal disease
are subjected to numerous cycles of chemotherapy and radiation, even when chances of an
improvement were almost non-existent. He emphasizes that in Britain, patients with terminal
cancer being hooked up to ventilators in intensive care are uncommon compared to America.
Patients should be asked: what is more important for them: quantity or quality of life? While
presenting the benefits and risks of chemotherapy the physicians must be as realistic as possible
(Smith & Hillner, 2010). Continuing chemotherapy will limit time and energy for life transition
planning. We all know the side effects of chemotherapy: fatigue, nausea/vomiting, alopecia,
anemia, etc. Smith and Hillners (2010) study shows that people with pancreatic cancer treated
with chemotherapy lived about 5.7 months while patients who did not receive the treatment lived
4.4 months (p. 5984). Is it worth suffering through chemotherapy to win a month of life?

DISCLOSURE OF ACCURATE PROGNOSIS

Synthesis
When the prognosis is poor, should the doctor tell the truth to the dying patient? This
question was on my mind for the last couple of years. Is it immoral for the doctor to allow the
patient to experience an agonizing death with prolonged suffering and the side effects of
chemotherapy when they could be empowered to choose to die peacefully? I read a few books,
watched a movie, and went through more than a dozen articles. Although most of the research
was done in different countries, more and more health care professionals believe that they should
provide truthful information to their patients. Also, an increasing proportion of patients all
around the world want to be entirely informed about their disease. Research proves that medical
care teams must learn how to explain to the patient that dying is a normal, inevitable, natural
process, and they do not have to viciously battle. Patients should have time to get their affairs in
order, make their wishes known for end of life care, and say goodbye to their loved ones.
Conclusion
The end of life is a very emotional and difficult time for patients and their families. It was
really hard for me to accept the truth when the doctor first told my father about his diagnosis and
that he had only three to six months to live. Then, fifteen years later, my mother was diagnosed
with the same cancer. I am thankful that the doctor told my parents the truth about their
prognosis. My parents were able to plan ahead and use their time wisely. Both of them left a
biography with a reflection on their lives as they experienced firsthand World War II and the
historical changes of their native country Russia. The idea to write the biography came after their
physician told them the truth - that they had limited time to live. Their stories are an invaluable
memory for my family and future generations.

DISCLOSURE OF ACCURATE PROGNOSIS

Although it is been a while since my last research paper was written, and I was a little
nervous, I really enjoyed working on this project. First, I learned from my readings that it is
beneficial for the patient to know the truth at the end of life. Second, the process of writing this
time was not as hard as I thought it would be. From our textbook and other readings from this
class I was prepared on how to write my analysis paper. The outline and grading rubric was
really helpful as well. Writing this paper made me more passionate about the need for doctors to
inform patients with terminal cancer about the truth of their prognosis.

References

DISCLOSURE OF ACCURATE PROGNOSIS

Gawande, A. (2014). Being mortal: Medicine and what matters in the end. New York:
Metropolitan Books.
Gawande, A. & Jennings, T. (2015). Being mortal [online video]. PBS.org
Kazdaglis, G. A., Arnaoutoglou, C., Karypidis, D., Memekidou, G., Spanos, G., &
Papadopoulos, O. (2010). Disclosing the truth to terminal cancer patients: a discussion of
ethical and cultural issues. Eastern Mediterranean Health Journal, 16(4), 442-447.
Konstantis, A., & Exiara, T. (2015). Breaking Bad News in Cancer Patients. Indian Journal Of
Palliative Care, 21(1), 35-38. doi:10.4103/0973-1075.150172
Shahidi, J. (2010). Not telling the truth: Circumstances leading to concealment of diagnosis and
prognosis from cancer patients. European Journal Of Cancer Care, 19, 589-93. doi:
10.1111/j.1365-2354.2009.01100.x
Smith, T. J. & Hillner, B.E. (2010). Explaining marginal benefits to patients, when marginal
means additional but not necessarily small. Clinical Cancer Research: An Official
Journal Of The American Association For Cancer Research, 16(24), 5981-5986. doi:
10.1158/1078-0432. CCR-10-1278
Wang, D., Peng, X., Guo, C., &Su, Y. (2013). When clinicians telling the truth is de facto
discouraged, what is the familys attitude towards disclosing to a relative their cancer
diagnosis?. Supportive Care In Cancer: Official Journal Of The Multinational
Association Of Supportive Care In Cancer, 21(4), 1089-1095. doi: 10.1007/s00520-0121629-y

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