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Becoming Patient: A Path to EffectiveParticipation With Chronic TerminalCancerSandra Katzman aa Department of Foreign Studies , Osaka University , Osaka , JapanAccepted author version posted online: 18 Jul 2012.Publishedonline: 05 Dec 2012.

To cite this article: Sandra Katzman (2013) Becoming Patient: A Path to Effective ParticipationWith Chronic Terminal Cancer, Health Care for Women International, 34:1, 68-85, DOI:10.1080/07399332.2012.695830

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Health Care for Women International, 34:68–85, 2013Copyright © Taylor & Francis Group, LLCISSN: 0739-9332 print / 1096-4665 onlineDOI: 10.1080/07399332.2012.695830

Becoming Patient: A Path to EffectiveParticipation With Chronic Terminal Cancer

SANDRA KATZMAN

Department of Foreign Studies, Osaka University, Osaka, Japan

One chronic terminal lung cancer patient was purposely selected.My grounded theory findings indicated that this middle-aged,asymptomatic, otherwise healthy woman used the basic social pro-cess of asking, “How can I participate in treatment?” in order toresolve a crisis of pain. Participation involved the overarchingcondition of trust in medical personnel, and included seven over-lapping considerations: expense, disease progress, bodily feeling,explanations, plans, emotional reactions, and turning point. Thefindings provide information that may lead to smoother transitionsto changing the status of a patient.

When I was diagnosed with terminal lung cancer in 2009, my status changedfrom scholar/journalist/educator to include patient. “Professor” is my visadesignation as an expatriate U.S. citizen in Japan. An oncologist, explainingthe reason of tumor markers found during a routine mole removal, touchedmy arm gently and said, “You have lung cancer. I am sorry. You will probablydie in December 2011.” In Spring 2012, I am alive because of statisticallyunlikely good responses to chemotherapies.

Without direct experiential evidence of my terminal condition, I findthat my gloom and shock have dissipated 2 years after diagnosis. I don a redwig to cover chemo-baldness to continue teaching English debate, academicwriting, and conversation at Japanese universities in April 2012. My satisfac-tion with life in Japan now also includes expensive, end-of-life, cutting edgemedical treatment. I am not fluent in Japanese, but the doctors and nursesand medical infrastructure meet me more than half-way in communication,partly because my native English is the international language.

Received 6 October 2011; accepted 17 May 2012.Address correspondence to Sandra Katzman, Department of Foreign Studies, Osaka Uni-

versity, 23-1 Murasakino, Nishi Sendo cho, Kita ku, Osaka 603 8246, Japan. E-mail: s.katzman@stanfordalumni.org

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More needs to be written about cancer from the patient’s point of view,especially in an international setting involving a range of caregivers. Conse-quently, my experience as a sick expat may help an interdisciplinary inter-national group of women’s health scholars and practitioners.

The small private clinic that removed the benign mole referred me toKyoto University Hospital kidney specialist after finding Hepatitis C in aroutine blood test. Extensive blood tests showed tumor markers. Doctorssearched for the tumor. Asymptomatic, week after week I saw images: CTscans, MRIs, X-rays, PET-CT scans. Lung cancer specialist Young Hak Kimof the Department of Respiratory Medicine inspired my confidence with hisfluent English and straightforward explanations. Japanese national healthinsurance covers all kinds of therapy, including hospice. Hospital socialservices provided timely consultation a month after diagnosis: Japan does nothave assisted suicide; Hepatitis C precludes body donation; organ donationis possible; cremation is the norm; permission is needed for ashes to leaveJapan. At the free legal services consultation, an English-speaking lawyeroffered suggestions about writing my own will via the Internet: get adviceof U.S. and Japanese lawyers for compliance, and obtain notarization by theU.S. Embassy. A retired pathologist cousin said I am getting as good or bettercare at less cost than in the United States. The Japanese lawyer said that ifmy life exceeds my May 2014 expiry work visa, exceptions exist to stay inJapan. I decided to stay in Japan on a university professor visa, and I keepworking as long as possible and probably will die in Japan.

The National Health Ministry reimburses me from U.S. $800 to U.S. $2000for large medical expenses every few months. Because of the duration andtotal cost of my care, the maximum medical expense per month I must paythe hospital will decrease to U.S. $800 in April 2012. My individual pre-mium of about U.S. $200 is calculated according to income. As a member ofthe editorial advisory board of Health Care for Women International, I wasasked to submit an article about my cancer. As a journalist, I have reportedas a freelancer writing about medicine for Reuters Health News, AmericanChemical Society journals, and BioMedNet. My outlets have recently shifted,independent of my health status, to an energy industry newsletter and toan Asia-Pacific security website. My academic research interest has beencomputer-mediated communication (the Internet and cell phones). As a re-sult, I relish the opportunity to contribute to health communication andcancer treatment by studying my own transition.

One chronic terminal lung cancer patient was purposely selected. Mygrounded theory findings indicated that this middle-aged asymptomatic oth-erwise healthy woman used the basic social process of asking, “How canI participate in treatment?” in order to resolve a crisis of pain. Participationinvolved the overarching condition of trust in medical personnel, and in-cluded seven overlapping considerations: expense, disease progress, bodilyfeeling, explanations, plans, emotional reactions, and turning point. The

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researcher presents findings to provide information that may lead tosmoother transitions to changing to the status of a patient.

Communication was not an obvious need. I felt defeated, submissive,and accepting of the diagnosis and prognosis. When the doctor outlinedpossible interventions, I wondered why he consulted me at all. Of course,I would take his suggestion. I had the high moral road of acceptance. Iwondered if I wanted to die.

Eighteen months after simultaneous diagnosis and intervention, I feltsurprise and distrust. I needed to participate when the side effects threat-ened my ability to function. I felt furious and betrayed when I showed thedoctor my hands, and he said, “Oh, shredding fingers.” He didn’t answermy question, “Why didn’t you tell me this would happen,” but apologizedand looked pained. The nurses explained that the pharmacist should haveexplained the severity of “dermatological side effects.”

Months passed. I recognized an allergic reaction during infusion at itsonset. The doctor asked how I had known. He had told me: carboplatinmay cause an allergic reaction. Trust was restored. Better communicationfollowed, and mistakes in the communication were righted with less damageto the relationship between medical provider and patient. This is not mymother’s cancer, where late diagnosis led to death in months. This is achronic form of the disease, where communication is participatory.

WHY IS IT IMPORTANT TO CONSIDER PATIENT PARTICIPATIONIN COMMUNICATION A PROBLEM?

“It hurts,” I hear a child call in the infusion laboratory of the hospital. “I’mafraid.” My own cocktail of chemotherapy is being mixed. Especially foradults who are living with cancer, cooperation based on understanding isneeded with doctors and nurses. Participation in communication, however,can be a problem for various reasons not limited to the difficulty of under-standing medically technical concepts. Communications with doctors andnurses have practical effects for managing and healing, as well as for inte-grating changes to self-identity. Communications should include the expla-nation of graphics (doctors’ sketches, nurses’ handbooks with photos anddiagrams, CTs, x-rays, data from blood tests).

Recently, as therapies have become very expensive (Weber &Ornstein, 2011), personal, targeted, biomedical, trustworthy participatorycommunication becomes more essential and problematic. Patients’ consentand compliance alone do not suffice. The patient concludes with chagrinheard in doctors’ terminology stumbling from chemical name to trade namethat management of disease concerns not only her own pocket but also thepharmaceutical industry who holds patents and influences medical care. Inthe increasing incidents of outpatient acute adverse allergic reaction (Mundia

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et al., 2009), an instructive doctor can depend on the educated patient’s im-mediate alert to nurses in the absence of sensitivity tests (Lee, Gianos, &Klaustermeyer, 2009) that have been deemed dangerous. Bodily feeling anda sense of well-being can be located as consensus on a dimension of deathexpectation at a certain time (Glaser & Strauss, quoted in Copp, 1998) wherepatient’s prevention of chaos (Pattison, quoted in Copp, 1998) includes par-ticipation, and the theoretical approaches do not fully recognize the dyingindividual’s physical condition (Copp, 1998).

As a result of research initiated in the early theoretical frameworks ondeath and dying about how to deliver prognosis to the dying, explanationsand understanding between medical caregivers and patients have grown(Copp, 1998). With a graphic clarity similar to that of patients’ expressiverenderings (Broadbent, Ellis, Gamble, & Petrie 2006), doctors draw explana-tory sketches (Mukherjee, 2010) and patients are thereby exposed to theperception of doctors. Points of view can be discerned in drawings (Mayset al., 2011); drawings pack a wallop of connotative meaning. Despite theindication of significance apparent in bountiful varieties of communicationtechniques, the functional status of a patient’s talking about health problemstaps into factors that do not yet fit on a psychometric scale (McDonald &Zauszniewski, 2011).

Transformations of self as emotional reaction to a diagnosis of lungcancer can bring about guilt, for example. This remorse brings home themid-1960s U.S. public’s acknowledgment of the “tragedy of tobacco” in theSurgeon General’s 1964 report (Mukherjee, 2010). A patient can suffer dis-ease and defeat and disgrace decades after quitting smoking as the pre-ventative measure that drove the decline of lung cancer between 1990 and2005 (Mukherjee, 2010). Complex oncology nursing and support staff areneeded to treat the complex disease that has “a lot of psychosocial over-lay” (Mukherjee, 2010, p. 317). In mental health nursing, patient acceptanceof chronic terminal illness is considered a useful active process (McDonald& Zauszniewski, 2011). Surprise, anger, criticism, and guilt toward self andothers may be expressed or unacknowledged by the patient.

There are practical consequences to reciprocity between patient andmedical personnel regarding anticipation ranging from job plans to treat-ment decisions. Studies of death and dying include the notion of “tasks”(Copp, 1998, referencing Kalish, 1979) for practical applications as well asfor psychological stages of patients and their milieu. Knowledge about ad-verse reactions helps the doctors decide what to do (Lee et al., 2009), andsometimes the presentation is discovered by the patient and expressed ver-bally. Reciprocity also serves to relieve the patient of burden by psychologicaltransference to the medical staff (surgeon Cusman Haagensen, in Mukherjee,2010, p. 194).

A patient’s anger and pain can lead to a turning point. The cutting,or turning, point of patient’s expression of perceived miscommunication

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precipitates change. A crisis that results in change requiring strength canreestablish equilibrium (McDonald & Zauszniewski, 2011). “Suspicion aware-ness” where the terminal patient begins to distrust imbroglios of continuedhealth (Glaser & Strauss, referenced in Copp, 1998) are similar to a patient’sfeeling of betrayal from a doctor due to an uncommunicated but predictablepain; a patient accuses the doctor of withholding warning of incipient pain.Patients need to trust doctors (Weber & Ornstein, 2011) and vice versa. Apatient can become patient, and this is in the best interest.

METHOD

I used grounded theory invented by Glaser and Strauss in 1967 as explainedrecently (Stern & Porr, 2011). “The basic social psychological problem andthe basic social psychological process” (p. 79) emerged from in vivo coding.I used theoretical sampling to “legitimize” (p. 77) emerging conceptual cate-gories. As is the proper outcome in grounded theory, “The model comprisedof interdependent stages and substage strategies could account for how themain concern was continually resolved” (p. 77). In other words, the waysin which the patient avoided pain and misunderstanding resolved the mainconcern of how to take part in medical treatment.

Participants

I recruited myself as the participant who recorded identity-changing experi-ences and needed to cope with becoming a terminal cancer patient. Applyinggrounded theory would provide a process beyond journalism. I have beena journalist since 1974, and an imperative reaction to diagnosis was to writea narrative account in a science reporters’ newsletter (Katzman, 2011). I hadbecome aware of grounded theory as an editor of a doctoral thesis in 2002,and as an avid reader of Health Care for Women International, and I tookthe opportunity in 2011 to learn to do grounded theory in order to write thisarticle.

I am in otherwise perfect health, age 61 on diagnosis, age 63 after datacollection. I lecture at Japanese universities. I decided to stay in Japan formedical treatment and to continue employment. Chemotherapy has beenvery successful; the date of original prognosis of death by December 2011(see Figure 1, Treatment schedule) instead was the date of signing annualcontracts to continue teaching at two universities for the upcoming academicyear (April 2012–March 2013) on the advice of my primary oncologist. Ismoked cigarette for decades (aged 18–32), part of the population of womentargeted by advertisers in the 1960s.

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FIGURE 1 Treatment schedule of chemotherapeutic agents from first month (December2009) through October 2011.Note: aaa indicates three infusions in 1 month; the cycle alternates with Gemzar (gemcitabine)only; allergy during eighth infusion in month 20 resulted in carboplatin being withdrawn fromtreatment regimen.

Data Collection

Data gathering began with medical updates written by the author, who sentthe data by email to family and close friends about hospital treatments atKyoto University Hospital. Data were gathered from January 2010, the onsetof chemotherapy, to August 2011, the start of the third drug regimen. Asthe theory developed, a few more medical updates were written and codedduring September 2011. Requisite density was reached.

Data Analysis

Each medical update was coded sentence-by-sentence using traditional opencoding. A few of the documents, which average 500 words each, were coded,and the labeled codes were collapsed into a handful of categories. As moremedical updates were coded, each was compared with the previous sets.New categories and subcategories were added. Memos were scrawled onthe printed data as coding progressed. A layered matrix emerged, especiallybecause the participant and the researcher were the same person. Memoswere sorted and the emerging categories suggested directions beyond graph-ics to psychometrics and allergic reactions and death and dying, the topic ofthe seminal works of grounded theory. More data were collected and coded,including a tape-recorded series of memos about hours spent dealing withfingertips almost too tender for toilet tasks. The theoretical codes from thefamilies of six Cs (adapted from Glaser, 1978, 1999, in Stern & Porr, 2011)were applied, largely matching coding categories. A theory developed con-cerning the need and process of a terminally ill patient becoming a patient,and how she came to those strategies by crisis resolution of communication.

FINDINGS—THE PROCESS OF BECOMING PATIENT

It should be noted that this study took place in Japan and the participantpatient is an expatriate U.S. citizen living in Japan since 1996. The cultural

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difference between languages is not daunting, as medical providers speaksome English. All people involved in this case consider the Japanese social-ized health care and treatment at an excellent university research hospitalfortuitous. From analysis of the data, I found that “becoming patient” had anappropriate double meaning as the basic psychosocial process. The problemof communication encompasses seven major overlapping properties.

Expense/Money

Money is a means to the strategy of being a patient. Chemotherapy is fa-mously expensive. In Japan, socialized medicine pays for 80% of the in-sureds’ needs, and everyone must be insured. Some large medical expensessuch as hospitalization and expensive drugs are partially reimbursed by localhealth jurisdictions. The participant, in dire medical need and with expend-able income, did not consider money a problem until the first regimen ofchemotherapy was underway. Taking control of the disease required moremoney than was on hand:

26 March 2010: I accepted the doctor’s suggestion that the first roundof chemo be extended from four to six infusions. He changed his mindbecause of my body’s good response to chemotherapy and minimal sideeffects.

Each chemotherapy is expensive—my payment is about $U.S. 1200.Therefore, I have redeemed funds from my investments. (Patient’s med-ical update)

The patient trusted the doctor’s judgment. She was not naı̈ve and was awarethat pharmaceutical companies sometimes secretly made payments to healthprofessionals (Ornstein, Weber, & Nguyen, 2011). As treatment progressed,she got positive feedback based on the medical updates from a pathologistwho is a relative in the United States regarding medical decisions and costs.

Chemotherapy was in abeyance for a year after the first round of drugsended in May 2010 because the tumors did not grow again until March2011, and daily oral chemotherapy started with Tarceva (registered trade-mark). Like many brand-name drugs, Tarceva is “wildly expensive” (Weber& Ornstein, 2011), and the doctor introduced the patient to the suggestedintervention as having only one drawback—the price of U.S. $100 a day be-fore subtracting 80% of national copayment. Again, the patient parlayed theinformation in its emotional context into action. Participating in the surpriseelement, the patient accepted an offer of early distribution of U.S. $10,000from the trustee of an inheritance fund. The expense is only a surprisewhen expressed as the cost of a pill; infusions can be as expensive. Thepatient adopted self-interest as a viable economic trait, in accordance with

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long-established personality characteristics of confidence and agency, a ca-pacity for action.

In July 2011, the patient’s drug regimen changed to Avastin becauseTarceva had lost efficacy and shown painful side effects. “Avastin is one ofthe most expensive cancer drugs on the market” (Couzin-Frankel & Ogale,2011, p. 144). The market is huge for “an illness that can be kept at bayover the long term, rather than a lethal disease” (Couzin-Frankel & Ogale,2011, p. 143). Avastin is a “biological” interference of vascular formation.Since October 2011, the infusion of Avastin has been given every 3 weeks as“maintenance.” The tumor showed evidence of growth in February 2012, andthe most recent regimen includes toxic infusions of Docetaxel (less expensivethan Avastin) from March 2012 in addition to the maintenance infusionsof Avastin. If Avastin infusion ends, the halted blood vessels will form instrengthened capacity, the doctor explained to the patient. The patient’scopayment for each infusion of Avastin has been about U.S. $1,400. Thepatient, therefore, considers that she is “hooked” and for expense calculationstrusts the doctor’s prognosis that no matter what, death will come by 2016.Portfolio assessment by an expert bears out her calculations and allowsconsiderable financial relief.

Medicine Effect/Disease Progress

The medicine has the purpose of retarding tumor growth and holding thetumor size steady. The anticipated consequence is prolonging the life ofthe patient by preventing further spread and growth of the cancer. Thepurpose of the patient’s psychosocial strategy is participation in the medicalcourse by communicating with the doctor about the severity of side effectsand adverse reactions especially in ways that will impact treatment.

By affecting a chemical signal of the tumor, Tarceva also wrecked havocwith the formation of skinfolds around nails on fingers and toes. The patientwas shocked to learn that Tarceva treatment when effective against tumorswas continued sometimes in patients despite the side effect perionychia, lit-erally, “around the nails.” She was relieved to learn her reports of the painfulside effect swayed medical decision to stop the drug because the price oftumor control at the expense of pain would not have been acceptable.

29 June 2011: CT showed “slight increase” in the size of tumors and bloodtest also showed “very slow increase” in levels of tumor markers. “Yourdisease is slightly progressing,” the doctor said. “Therefore, Tarceva isnot as effective as possible.” Noting the painful side effects, the doctorsaid, “Tarceva toxicity is not so slight.” He recommended a change. Iam very happy to end months of escalating nail torture. Concerns aboutdying seemed very far away. (Patient’s medical update)

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As for the regimen starting in July 2011 that included carboplatin, thepatient had been administered that dust of platinum during her first regimenof chemo in 2010 and her body had tolerated it well with minor occasionalnausea. “Do whatever you did then’ [as far as diet],” the doctors advised,validating the patient’s ability to do more than merely comply.Doctors’ explanations foster reciprocal trust with a patient:

Outpatient chemotherapy/biotherapy in oncologist’s offices are beingutilized in greater numbers, increasing the risks of acute allergic reac-tions. . . . Acute allergic reactions to anticancer therapy must be antici-pated in all cases. Appropriate preventive protocols and prompt responsewill minimize the morbidity and eliminate mortality. (Mundia et al., 2009,abstract)

The patient’s alert to nurses of an acute allergic reaction allowed action:

28 July 2011: The nurses immediately stopped the infusion, took a bloodsample, called the doctor, and took photos of the reddening of my fingersand neck. The doctor ordered IV antiallergy drug, and the symptomsstopped in 5 minutes. They observed me for another 40 minutes and sentme home with antiallergic pills for 4 days. (Patient’s medical update)

Feeling pride at being at the cutting edge of medical treatment, the patientis nonetheless wary of the mysterious stuff she is accepting into her bodyby seemingly innocuous pill and by ghastly sessions of infusion. She under-stands the following:

Avastin is designed to choke off a tumor’s blood supply. This strategy,says Robert Kerbel, a cancer biologist at Sunnybrook Research institute atthe University of Toronto in Canada, was based on the theory that all solidtumors—like those in the breast, lung, and colon—need to stimulate newblood vessels to grow, a process called angiogenesis. Now, “that wholetheory is undergoing a lot of reexamination.” (Couzin-Frankel and Ogale,2011, p. 143)

After an allergic reaction to carboplatin cut that chemo from the triad of theregimen in July 2011, the patient was fearful that she had lost one of thearrows in the quiver of treatment. “Avastin’s performance varies dependingon the chemotherapy drug with which it is paired” (Couzin-Frankel & Ogale,2011, p. 143). The doctor explained, however, that carboplatin is a boosterand not responsible for the very effective action of the July regimen. Weeksof worry vanished, leaving a renewed trust in the doctor’s decisions andinclination to dismiss her own uninformed misgivings that tended to defaultto worst-case scenario.

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Bodily Feeling/Well-Being

The bodily feeling of well-being is the contradiction of palliative terminalcare. The patient knows she will die of the disease for which the doctor istreating her. The patient also knows that her well-being is not a measure ofthe efficacy of the treatment to delay tumor growth. The consensus of thesedimensions is deeply confusing and logically irresolvable. Comparing herown worries about how to be a patient, the patient wonders how anyonecan be a cancer doctor knowing death is certain at an unknown time (Glaser& Strauss, 1998, as cited in Copp, 1998). None of the current theoreticalapproaches takes full account of the dying individual’s physical condition(Copp, 1998). The patient wonders whether it is an oxymoron to consider adying patient’s progress. “Progress” is the term applied most often to the fore-gone winner; one hears of the progress of the disease. Although every clinicalvisit includes a consultation that begins, “How do you feel?” a feeling of help-lessness pervades the patient’s existence. Participation in physical senses isessential to prevent chaos. Plans to try scuba diving, continuation of regularsport of jogging, and walking along river after infusions: reporting these activ-ities to doctors and hearing the doctors subsequently refer to the activities inassessment of current therapies eases the isolation of being a terminal patient.

Explain, Understand

Language and graphics interactively cause explanations and understanding.The use of language for communication emerged as a major concern,

including terminology and languages. How to express unusual situationsrequires inventive naming, and what words can be used to voice optimismcan require a doctor’s input. For example, the cautionary and descriptivephrase for months of perionychia is alliterative, and hope is assured by adoctor in nontechnical terms:

3 September 2011: Nail pain, renamed “tender tips” by my sister, is less.I can wear dishwashing gloves and open packages of soymilk. (Patient’smedical update)

9 September 2011: Dermatologically, my nails, though not yet completelyhealed from the side effects of Tarceva, can be expected to heal “per-fectly,” says a doctor. (Patient’s medical update)

At the opposite end of the scale from euphemism is the Internet hit phrase,instantly recognized by the doctor and allowing medical response to a phe-nomenon small and difficult to see on first presentation:

28 May 2011: “Ah, shredding fingers!” the doctor remarked, readingmy record of 2 weeks of small papercut-like wounds on my fingertips.He agreed that the wounds should be covered, and told me to use a

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prescription body rash cream that I have in abundance. He had not men-tioned that side effect, although the diary has a place for skin (“derma”)issues that the pharmacist at the hospital had translated from Japaneseinto English. I had wondered for days about the source of the papercutswhen they first appeared; had I cut my finger closing the plastic bottle ofhair shampoo? Eventually, I realized that the cuts might be a side effectof the chemotherapy, and the Internet quickly answered that “shreddingfingers” was a term that matched my inquiry of “paper cuts Tarceva.”(Patient’s medical update)

Japanese language has rarely been a problem for the patient. During thefirst infusion of Gemzar, however, the nurse’s placement of hot pads did notalleviate the pain that the patient assumed, incorrectly, was due to injectionsite. Weeks later, the patient learned that the drug itself caused the pain.Evidently, the nurse could not explain in English the source of the severepain that lasted 30 minutes. At a subsequent infusion, that nurse requestedan bilingual colleague and explained that many patients complain duringGemzar infusion of severe pain that is not otherwise dangerous but cannotbe prevented. By responding with education to the communicative glitch,the nurse thereby alleviated patient anger, fear, and anxiety.

Almost 2 years after diagnosis, another welcome variety of verbal com-munication surfaced as jokes told within the patient’s family in August 2011.Humor allowed participation in the process of becoming patient, that is,cohort accepting a member’s noncrisis chronic terminal condition:

Sister: You’re supposed to be dead. I don’t think of you as even sick.(Patient’s medical update)

Cousin: You’re dying of cancer, and you’re concerned about whetheryou can play the piano! (Patient’s medical update)

A potentially abrasive interchange occurred when a doctor revealed, uponquestioning, what the patient considered missing information:

6 April 2011:

Patient: I read on the Tarceva English language website that I shouldn’teat grapefruit. True?

Doctor: Yes. Avoid grapefruit and grapefruit juice.

Patient: Oranges, lemons OK?

Doctor: Oranges and lemons OK.

Patient: So it’s not the citrus. Why not eat grapefruit?

Doctor: An enzyme affects the metabolism of Tarceva. (Patient’s medicalupdate)

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Self-sufficiency or self-empowerment emerged as a major concern. Hourssearching websites had benefit during summer days faced with Japan’s ubiq-uitous dispensing machines filled with cold tea, coffee, water, and, mostappealingly, fruit juices. Tarceva takers should eschew grapefruit juice.

Explanatory graphics include the oncologist’s sketches, medical imagin-ing techniques, data graphs, and photos. Although I was ready to modify mycategorization scheme of ideas that were not well supported (Stern & Porr,2011), I found that graphics were as essential to the patient’s understandingas verbal explanations. Indeed, the patient reports that accepting the ve-racity of the November 2009 diagnosis depended on medical images whenthe presence of a malignant tumor was denied by all her experience andonly acceptable by the oncologist’s display of graphic proof (see Figure 2,doctor’s sketch) augmented by convincing words anchored to her body bythe gentle touch of his hand (Katzman, 2011). Copp states, “Early theoreticalframeworks on death and dying made significant contribution . . . in the areaof research on communication, for instance, with studies on how to ‘breakbad news and communicate with the dying and their families” (1998, p. 389).As treatment progressed, her medical updates relied on images:

24 February 2010: The CT scans show that the primary tumor, the onein the lung, stays the same size. In other words, it is “stable.” (Patient’smedical update)

28 May 2011: The oncologist pointed to the white streaks in the lung x-rays. “The tumor masses seem to be slightly increasing.” (Patient’s medicalupdate)

FIGURE 2 A sketch of the four locations of Katzman’s malignancies drawn by Young HakKim while first explaining the diagnosis to her in November 2009: upper left lung (primarytumor), between the lungs, under the left arm, on the neck.

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In addition to providing evidence for the oncologist’s conclusions, theimages allowed the patient to clarify physiology, such as the surprisinglyhigh location of the lungs in the chest cavity and whether the aorta showedon an x-ray or CT: As Mays and colleagues relate, “Visual representationsprovide a window into themes that are not easily or comfortably expressedthrough words” (2011, p. 330).

2 August 2011: The dermatologist shows a page of photos of worse cases[of hand and foot syndrome]. “Patients talk of so much intense pain, whileyou jogged yesterday.” (Patient’s medical update)

Description of how a new drug worked was communicated to the patientby a quick sketch by the doctor:

15 September 2011: The oncologist sketches tumor growth as a circle.Red arrows pointing towards the tumor represent blood vessels supplyingthe tumor; the arrows are crossed out, representing the action of Avastin.Then he draws a few more red arrows to indicate new blood vessels tosupply tumor when Avastin is stopped. I remark that I had seen on awebsite a similar graphic, showing the regrowth of blood vessels whenAvastin is stopped. (Patient’s medical update)

As author/oncologist Mukherjee describes his own concise sketch for a pa-tient, “Induction. Intensification. Maintenance. Cure. An arrow in pencil con-necting the four points on a blank piece of paper. Carla nodded” (2010,p. 127). One of the recipients of the medical updates said the sketch cor-rected her misunderstanding. As a study of cardiology patients’ drawingsconcluded, the content of the drawings may be a useful as a method ofcorrecting misunderstandings (Broadbent et al., 2006). Like patients’ draw-ings, doctors’ drawings express emotional context. Although referring to apatients’ drawing in health-related research, the observation about the rich-ness of representation seems to the patient to apply to doctors’ drawings:“Drawing as a projective technique has been used by several disciplines toexpose motivations and perceptions about an object, situation, or condition”(Mays et al., 2011, p. 330).

The importance of communication, “talking about health problems,”needs a better metric (McDonald & Zauszniewski, 2011). The needs to planand to act are predicated on understanding. Comprehending the strangenessof chemotherapy is difficult for patients as well as for chemists. Discoveringgrounded theory helps answer the patient’s question of how to participateand what is going on in her body and mind.

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Emotional Reaction

Emotional reactions transform self-identity. Participation in the process com-municates to the self and others psychological movement. Values of the sub-sets are paired: fear and unacknowledged fear; expressed and unexpressedanger; helpless anxiety and relieved anxiety; and positive and negative sur-prise. Many aspects of the person are converted in the process of becomingpatient. The ability to solve the problem of helplessness, for example, cangovern whether the patients’ “concerns and anxiety are likely to interferewith their long-term functional recovery” (Broadbent et al., 2006, p. 913)as mental health researchers wrote of predictive drawings by patients. Theparticipant in this study described her conscious problem solving duringan emotional dilemma following an acute allergic reaction during infusionfrom which physical symptoms she was quickly resuscitated but which leftlingering anxiety:

28 July 2011: But for a couple days I had to make an effort to intervenewith alternate input when the scary allergy part began to replay in mymemory. For instance, on the train I needed to start listening to narrativepod-casts. (Patient’s medical update)

The warmth of generosity and impulse of the patient to praise nurses grewwith sufficient experience and thinking about events that had been misun-derstood. This emotion humbled the patient and allowed her to feel herselfwithin the realm of full participation as a person integrated into a sociallyfunctioning system. The cold distance of the unrelenting diagnosis disap-peared.

Surprise also contributed to the transformation of self. In some cases,others expressed the surprise, as in this dialogue:

20 January 2010: I [the patient] am one of the 20% for whom chemother-apy reduces the tumor size.

“You are lucky,” the oncologist said in agreement, adding, “I am happy.”(Patient’s medical update)

Humor evidenced the family members’ acceptance of the participant’sprognosis and the willingness to forego pity. Self-sufficiency and self-empowerment extend from the patient throughout her milieu, transforminggrief to a joyous fortitude: “Acceptance is an active process in which per-sons acknowledge their thoughts, feelings, and memories” (Hayes, 1994, inMcDonald & Zauszniewski, 2011, p. 416).

On the other hand, acceptance by the patient can bewilder her corre-spondents. For example, the patient blogged that she could “no longer deny”the terminal diagnosis, referring to having experienced a range of reactions

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from anger to denial. A friend reacted to the blog with despair; but to thepatient, “the prescriptive destination had been reached.” The patient hadread early death and dying literature, and she had experienced end of resis-tance as a positive element: “Acceptance of chronic illness is conceptualizedas the desire to take possession of one’s illness” (McDonald, Wykle, Misra,Suwonnaroop, & Burant, 2002, in McDonald & Zauszniewski, 2011, p. 416).

Anticipation/Plan

The process of becoming patient solves problems of anticipation and plan-ning, which are reciprocal. The interactive aspect of predictions applies tothe patient’s treatment plan, job status, leisure activities, and disposal of bodyand other properties after death. The participant’s experience of her oncol-ogist led her to believe that he was unusual because a “dying individual’sown perspective and values are also often unaccounted for in the currenttheories” (Copp, 1998, p. 389). The patient continues:

17 November 2010: A CT scan showed almost no change in primarytumor compared with CT scan in September 2010. Armpit lymph nodeshowed no change; no new regions of tumor in lung; liver normal. Theblood test showed tumor markers stable and liver function good.

Patient: Does this surprise you?

Oncologist: No.

Patient: Can I scuba in March?

Oncologist: Yes, very probably.

Patient: Does the prognosis change? In other words, will I live longerthan the original December 2011 prognosis of death?

Oncologist: Maybe. Congratulations. You are a very successful case.

Next check-up January 26 2011 will be a chest x-ray only. (Patient’smedical update)

The patient has been able to plan to continue her teaching activities for 3consecutive years. Each year that she asked the oncologist, the answer wasunequivocal and she learned that the doctor anticipated the question andthat he knew considerably more about prognosis than he could explain toher. Decision making by the patient and the doctor require trust, a task of“active participation” (Copp, 1998).

Turning Point

The patient’s anger, pain, and preparation precipitated action, acknowledgedby doctors and nurses. She cannot speak for the emotions of the doctors and

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nurses, who maintain a professionally steady demeanor. The cutting pointrestored the patient’s trust by forcing her participation in treatment at a criticaltime of medical emergency. The crisis of pain—chronic fingertip propelledby acute allergy—resolved through communication into acceptance of trust.

Suspicion awareness described by Glaser and Strauss was similar tothe mistrust the patient felt during an infusion. Distrust had been buildingfrom the unexplained finger pain; in addition, the pain during infusion ofthe Gemzar was as yet unexplained and the patient incorrectly blamed thenurse. Then, after 2 hours of infusion of Avastin and Gemzar, the finalinfusion started, which was carboplatin. The patient relaxed; the pain hadceased when the Gemzar was finished. Suddenly, however, she felt an acuteadverse reaction and was lifted out of confusion and blame assignment toemergency clarity:

27 July 2011: I had been told of possible allergic reaction, and so whenI felt itching that seemed to be pouring into my body from the fingertipsI alerted the nurses by pushing the call button from my reclining chairand saying with confident alarm, “Allergy!” (Patient’s medical update)

Appropriate action followed immediately, and long-term decisions weremade in the upcoming weeks to discontinue the offending chemical fromthe regimen. Participation in overcoming the grave danger was a turningpoint for the patient. Distrust and suspicion and wrong-headed assumptionsof incompetence were dispelled by action in concert.

CONCLUSIONS

Solving the psychosocial problems of becoming patient develops the theoryof that task, and is an attempt to “carry the analysis to deeper levels” (Copp,1998, p. 387).

Participatory communication verbally and graphically among patientand doctor and nurses about tumors of the lung has been “an area forfuture work to explore” (Broadbent et al., 2006, p. 913).

I undertook this study in order to lay the groundwork for developinga medically competent participatory communication that would amelioratethe psychologically damaging influences of anger and mistrust, for example,during the side effects of chemotherapy in an educated adult terminal cancerpatient.

The actions and thoughts of this patient at each stage chronologi-cally and ontologically (finance, work status, physical independence, andother categories of change precipitated by disease) represent the growth ofnegotiated meaning in the complex rapidly developing practice of chronicterminal cancer treatment. In this study, once the patient recognized that herparticipation was relevant and required, communication could play a major

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role in physical and mental equilibrium as well as aid the doctors and nursesin medical decisions about treatment.

Trust played an enormous role throughout the process of taking upthe task of participation, although violation of trust occurred perhaps as aprerequisite to assuming an active role. A powerful force driving the crisisand change of identity was the chronic debilitating finger pain side effect,enigmatic to the patient for several weeks.

Becoming patient is a process of problem solving. The expense ofmoney in chemotherapy increases proportionally with the survival of thepatient, changing her strategy for the source from readily expendable fundsto the activity of obtaining distributions. The medicinal effects as the dis-ease progresses need increasing patient communication as she struggles tomanage the side effects of the cytotoxins. Patient reports of bodily feel-ings indicate not only the success of treatment to prolong life but also arevaluable clues to the toxicity of those treatments. Explanations of the pa-tient and of the medical staff must cross the barriers of lived experienceand expert knowledge to be effective in choosing treatment, tolerating sideeffects, and achieving psychological acceptance. Emotional reactions whenacknowledged and communicated melt debilitating isolation and fear. An-ticipation and planning overcome resignation. The turning point seems todepend on the experience of pain.

LIMITATIONS

The participant in this study was the author, a highly educated asymptomatictreatment responsive terminal cancer patient. Therefore, the communicationstrategies and medical participation capabilities and needs may differ in lessinvolved or in more medically complicated patients.

FURTHER STUDIES

This study has implications for further research. Can the substantive theory,becoming patient with chronic terminal cancer, be applied to cover thepatient who is already submissively reconciled? It would be interesting tosee whether the process of becoming patient can maintain its explanatorypower in the larger context. It is unlikely that the trajectory of trust, distrust,trust regained could be generalized to nonterminal, nonchronic patients.

Some research questions that need to be studied include the follow-ing: (a) what are the most effective communication strategies at each stageto reduce the likelihood of omission of useful information, (b) how can aterminal patient believe that her participation in treatment needs to be as-serted, and (c) can this theory be applied to children? In conclusion, thefindings from this study indicate that becoming patient develops through aprocess of sometimes imperfect communication and sometimes painful and

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dangerous treatment. This discovery could enable patients and medical per-sonnel to have a new perspective, which might lead to more effective clinicalinterventions during the treatment of chronic terminal disease.

Regarding the expense of chemotherapy, a major reduction in the pricesof the essential oncology drugs is considered necessary to “really improvesurvival from cancer,” said Dr. Piot, currently the director of the LondonSchool of Hygiene and Tropical Medicine (Harris, 2011).

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Broadbent, E., Ellis, C., Gamble, G., & Petrie, K. (2006). Changes in patient drawingsof the heart identify slow recovery after myocardial infarction. PsychosomaticMedicine, 68, 910–913.

Copp, G. (1998). A review of current theories of death and dying. Journal of Ad-vanced Nursing, 28, 382–390.

Couzin-Frankel, J., & Ogale, Y. (2011). Once on “fast track,” avastin now derailed.Science, 333(6039), 143–144.

Harris, G. (2011, September 18). China and India making inroads in biotechdrugs. [Electronic version]. New York Times. Retrieved from http://www.nytimes.com/2011/09/19/health/policy/19drug.html?pagewanted=all

Katzman, S. L. (2011). Cancer in Kyoto, a first person account. ScienceWriters, 60(2),6–7, 29.

Lee, C., Gianos, M., & Klaustermeyer, W. B. (2009). Management of hypersensitivityreactions related to common cancer chemotherapy agents. Annals of Asthma,Allergy, and Immunology, 102, 179–187.

Mays, M. M., Sturm, L. A., Rasche, J. C., Cox, S. D., Cox, D. A., & Zimet, G. D. (2011).Use of drawings to explore U.S. women’s perspectives on why people mightdecline HIV testing. Heath Care for Women International, 32, 328–343.

McDonald, P. E., & Zauszniewski, J. A. (2011). Psychometric properties of a mea-sure of acceptance of long-standing health problems. Issues in Mental HealthNursing, 32, 416–432.

Mukherjee, S. (2010). The emperor of all maladies, a biography of cancer. New York,NY: Simon & Schuster.

Mundia, M., Ali, S., Ali, M. F., Devlin, D., Nezhat, F., & Mundia, A.G. (2009). Acute allergic reactions to infusion chemotherapy in outpa-tient office practice. Journal of Clinical Oncology, 27 (Suppl., abstracte20722). Retrieved from http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=32147

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Stern, P. N., & Porr, C. J. (2011). Essentials of accessible grounded theory. WalnutCreek, CA: Left Coast Press.

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