A

dhhar

K

I

dfoehptflr

T

beTtbolpc

1d

Seminar article

Patients’ perspectives in high-risk medical decision-making

Michael Beasley, Ph.D.*Wellness/Stress Management, Montgomery County Department of Fire and Rescue Service, Rockville, MD 20850, USA

bstract

People faced with making risky treatment decisions in the context of life-threatening illness are typically well-informed about theirisease, alternative courses of action, and the odds. But they often need help dealing with the emotional and mental challenges of makingigh-stakes decisions in unfamiliar areas on an accelerated timetable at a time of personal, existential threat. Reframing the situation canelp such individuals transcend ingrained perspectives, freeing them from traditional ways of thinking and, in the process restoring theirbility to decide, fostering the courage they so desperately need, and even instilling hope in the darkest of times. © 2008 Elsevier Inc. Allights reserved.

Urologic Oncology: Seminars and Original Investigations 26 (2008) 674–678

eywords: Frames; Courage; Hope; Necrosis; Bowel; Risk; Decision

hsmwiowscpkb

taccswdw

abdup

ntroduction

Patients in high-risk medical situations who, with theiroctors, take on decision-making about treatment optionsace the most consequential of decisions in life at the worstf moments in their life. As a clinical psychologist inter-sted in behavioral concerns related to medical problems, Iave had the opportunity to work with a number of suchatients under circumstances of fear, doubt, and threat toheir lives and bodies. The observations and personal re-ections that follow are based on these professional expe-iences.

he set-up

The people I have known are typically well-informedy their doctors and by their own research. They arexquisitely aware of the risks of various medical options.his is a time in their lives defined by threat—threat to

he physical integrity and functioning capacity of theirodies, threat to the personal meanings and achievementsf their lives, threat even to the continuation of theirives. This is a moment in life of which existentialisthilosophers would say that just to decide is an act ofourage.

* Tel.: �1-301-279-1512; fax: �1-301-279-1513.

sE-mail address: Michael.Beasley@montgomerycountymd.gov.

078-1439/08/$ – see front matter © 2008 Elsevier Inc. All rights reserved.oi:10.1016/j.urolonc.2007.12.009

These patients often must gamble on options, and they doave a keen sense of identity with and ownership of thetakes. This game is about my brain, my bladder, my heart,y testicles, or my ovaries. To win or lose has to do withhether I will have memory, or walk a straight line, or have

ntercourse with my lover, or drag around a urostomy bag,r tell jokes to my grandchild. In this game, the gambler andhat is gambled are the same. The odds that matter are not

tatistical; they are one’s personal chances under specificircumstances. So it is that neither from knowing statisticalrobabilities nor from the guarantee they’ve found a “goodnife” will the patients I’ve known in these circumstanceset their hopes.

Those patients who express unqualified confidence inheir surgeon will, nonetheless, react with exclamationsbout just who it is who is actually being cut. A fire-fighteraptain told me recently of ruling out four surgeons for whatould be a career-ending procedure. All seemed good. Yet,he settled on another, not just because this surgeon cameith the highest of recommendations, but because “thisoctor got me!” The surgeon asked the captain what sheanted to be able to do in her career following surgery.Such patients have the feeling they’ve been dealt a dis-

dvantaged hand. Suddenly and involuntarily they haveeen plopped into a high-stakes gamble wherein they mustecide among competing risks in which all outcomes arencertain and no outcomes are all good, even if the medicalrocedures are all done well. At least, that’s the way the

ituation can feel. Even so, most don’t get lost in the

uuY

T

bwdmatobA

mambesojo

lg

T

ssuddrhm

M

cslmryf

vcstsrah

htcw

npBwisp

“ryiechdSlcna

S

batesmahc

tiII

675M. Beasley / Urologic Oncology: Seminars and Original Investigations 26 (2008) 674–678

nfairness of it all. They do want to think smartly and to setp the best outcome. Still, this is a tense moment in life.ou want, you need, to get it right.

he stakes

Getting it right may mean thinking clearly, on a timeta-le, about a very scary personal matter that has little to doith one’s usual areas of expertise. I may, for example,esign cargo payloads or plot trajectories for a rocket to theoon; I may spend my days placing little bottles of flowers

nd glasses of water and paper napkins and flatware on aable in preparation for the meal the next customer willrder; I may rob honey from a comb that the 5,000 bees inoxes in my back yard have diligently worked to produce.t least, that’s what I mostly did yesterday.Today, my doctor says I have to decide whether to have

y bladder or my bowels cut and, if that’s successful, to goround with hoses and bags coming out of and hanging fromy body. Today, my doctor said I may have to choose

etween my life or my dorsolateral prefrontal cortex. What-ver he actually said, that’s how it sounded. I might live, ifurgery is successful. But I just might not remember fromne moment to the next the life I’ve lived, or with whom Iust lived it, or what I do with payloads to the moon or boxesf bees, or water glasses and paper napkins.

At least, that’s how it can feel. It is a critical moment inife. You want to get it right. You want to know your doctorets you.

he players, their game

Marcia knows she will die early, but she is in a constantearch to influence severe, unremitting pain and to haveignificant medical knowledge for others resulting from hernusual case. Steve, a composite patient, is neither ready toie nor able to decide. His core psychological issue, asepicted, duplicates that of patients too large in numbers toecount. Paul, a firefighter, lived a high-risk life with aigh-risk medical situation, and was keen to choose the rightedical course to continue both.

arcia

Marcia had a steadily progressing case of osteoradione-rosis of the facial skeleton. While an infant, radium in amall vial was attached by tape to the outside of her upperip by the family physician as a way to eliminate a birth-ark. It did. Half a century later, in her middle age, a

un-of-the-mill dental procedure kicked off what would beears of constant, excruciating pain, and years of searching

or a confirming diagnosis. p

Marcia had a degree in History of Medicine from Har-ard and was a musician with perfect pitch. Her father, alock-maker in Princeton, designed the gyroscopes forpacecraft in the shuttle program. Marcia had her father’souch for precision and detail along with her artist’s creativeense. She brought into our work copies of cutting edgeesearch on effects of nuclear exposure, medical procedures,nd pain relief. She produced out of our work poetry abouter pain and artistic images of hope.

During our work, we laughed a lot. For her, there wasumor in observing the reactions of new doctors when sheold them she understood it was just a question of whetherancer would develop and kill her or whether her faceould fall off first. It turned out to be the cancer.Her pain could not be mitigated either by surgically

early severing the trigeminal nerve or by a thalamic im-lant. She was left with half a numbed face and severe pain.oth the mundane dental work and surgery to pack her jawith cadaver bone added not just more pain but more holes

n her face that would not heal. Hyperbaric chambers, goodurgical hands, and prayers were never enough to preventredicted serious loss accompanying every hoped-for gain.

Toward the end, Marcia began several meetings stating:I need hope.” Early on, I responded: “Hope of a new paineliever?” “No.” “Hope another doctor will not abandonou?” “No.” “Hope for.. (whatever)?” Looking me directlyn the eye and speaking softly, perhaps with a tinge ofxasperation yet with an air of tolerance at my slowness toatch on, she would reply: “Not hope for anything. Justope.” Marcia never said what she meant by hope. Heremeanor, however, gave clues to what she experienced.he would come into our meeting dispirited; she would

eave with a renewed spirit and an appearance of calmertitude. She seemed to have regained some sense of open-ess to the future as she smiled warmly and proclaimed inquiet voice, “I have hope now.”

teve

Steve came to see me shortly after he learned he had arain tumor. Until that moment, his dying had been a vaguewareness, at best, and decades away, at least. Now, he iserror-filled at the possibility. His immediate problem, how-ver, was not dying but deciding. A successful and re-pected mathematics professor, Steve was on the brink of aajor professional achievement. He is married to Joan, an

ccomplished physician, so he knows the score, really. Theyave two, not quite launched, mostly gratifying, intelligenthildren.

At this point, his psychological world is dominated bywo worst case scenarios: If I don’t have surgery, I’m dead,f not right now, then relatively soon. If I do have surgery,’ll be a vegetable. Either I’ll never see my kids grow up or’ll lie around, propped up, drooling on myself and unable to

lay with my grandkids.

blpshunhrtbpatbnc

rmdcltt

P

oiwasrm

MgabbTwssp

hwcs

w

igs“m

rasryRgthrbt

PnPan

W

dawmt

ccbtospmtfatmgalsswy

676 M. Beasley / Urologic Oncology: Seminars and Original Investigations 26 (2008) 674–678

On the one hand, Steve could not get past the idea ofeing dead. On the other, brain damage, though not abso-utely incapacitating, was absolutely intolerable to contem-late. His personal frame about dying had become a per-onal problem about choosing. That was how he felt, despiteis surgeon telling him the vegetable outcome was highlynlikely. The strength of his surgeon’s reassurances couldot match the level of his anxieties. That gave him the senseis surgeon wasn’t attuned to him and fed his anxieties. Theock and the hard place Steve was stuck between were hiswo ideas. They were extreme, they felt absolutely true, andoth held high anxiety for him. These two ideas made up hisersonal conceptual frame of reference about his optionsnd his future. Further, Steve was not just averse to thesewo options. He was risk-averse in general. That could note changed in the short-run. But how he construed theature of his options, how he framed his choices, couldhange.

A grace period for decision making gave Steve time toead, to reflect, and to talk about death—his. A thoughtfulan, he was also able to construct some different and

eeper meanings about being alive, even if with changedapabilities. It was not his medical options, but the under-ying assumptions of his personal frame of reference abouthe problem that changed. Today, some lengthy period ofime post-surgery, he’s alive. He is, also, not a vegetable.

aul

Paul, a firefighter on an urban search and rescue team,perated a jackhammer in the rubble of the Murrah Buildingmmediately following the Oklahoma City bombing. Heondered later whether it was the impact of the jackhammer

ction that literally cost him his bowels. Paul is athletic. Hetill has the well-sculpted body of a weight-lifter who oncean 5 miles every other day. Now he just has 25 pounds lessuscle than when this all developed.Exploratory abdominal surgery had been scheduled for a

onday. But the Saturday prior, the surgeon opened Paul’sut on an emergency basis due to severe, unremitting painnd a clearly formed diagnostic guess that something reallyad was going on inside. It turned out an “unexplainedlood clot” had led to the necrosing of the small intestine.he intestine was gangrenous. All but thirteen centimetersas removed. The cecal valve and ligament of Treitz were

pared, even though they evidenced a grayish caste at initialurgery. A second surgery 12 hours later showed theminking up.

Paul woke up 8 days later. He was aware immediately ofis urinary catheter. The first thing he asked his wife washether there was a colostomy or just a pee bag. She

onfirmed there was “just a pee bag.” “Good,” Paul re-ponded, “I can live with that.”

Paul was good at rapidly sizing up situations. This skill

as life-saving when his workplace was a burning building p

n which he intentionally remained while everyone else withood sense was running the other way. His “sizing up”eemed to me to result in this: a sense of gains that weregood enough”; losses he could live with; then, commit-ent to a course of action.Paul disdained doctors’ recommendations of disability

etirement and the suggestion he purchase a hospital bednd live on the first floor of his home. Three months post-urgery he was back on light duty, and shortly afterwards heeturned to command a firehouse and to run fire calls 7 moreears. He is currently a chief at the fire training academy.ightly or wrongly, Paul had reasoned he could as easily notet damage or infection on a fire call sweating in fullurn-out gear as playing it safe. Ten years after surgery, heas had 8 ports installed in his body, several staph infectionselated to his paraphernalia lines, and has lost his gallladder through surgery. He has turned down the option ofransplanting either intestines or both intestines and liver.

Paul’s conclusion 10 years later is still a considered one.ointing to the TPN on his belly, which delivers 1,500 cc ofutrients daily over a 6-hour period, 300 cc maximum/h,aul says he concludes with each new day that this beats thelternative. He figures he will be dead from this one day, butot now.

orking with the hand that is dealt

Writing about what I do with these patients is moreifficult than just doing it. While I respond to each person asn individual, there are some basic principles I find I amorking from with almost anyone. These principles come asuch from my background in philosophy as from my prac-

ice of psychology.Always, I want to foster a therapeutic conversation that

arries the potential of freeing the person from what psy-hologically ties him to the past. What ties one to the past cane old, unresolved issues or overwhelming anxieties, or—inhe present context—an existing personal frame about deathr changed mental or physical capacities. My sense ofomeone being free from what ties him to the past stems inart from my understanding of one concept of enlighten-ent from Eastern philosophy. To be free from the past in

his sense is to live fully in the present and to be open to theuture. My work related to this idea is an attempt to providecontext of dialogue, which can help free the person from

he limitations of how he thinks about the particulars of hisedical situation, his options, his weighing of potential

ains and losses. What ties one up can be, and frequently is,limiting personal perspective about certain realities of

ife—the way things are—or ideas about the way thingshould be. Related to this principle is an observation I readomewhere in the literature years ago, and often amend to fithatever is my present purpose: if you cannot see throughour personal perspective, you can only see through your

ersonal perspective. Some years back, a patient gave me a

scstwrptptdp

fCip“[sticmocMo

pdppaiaIethc

ptswpnltmehibw

5wtWtth

petpfoaaatrctHppladcsitcpsRct

micwtttfwtt

T

e

677M. Beasley / Urologic Oncology: Seminars and Original Investigations 26 (2008) 674–678

ingle-frame cartoon clipped from a magazine that wellaptured the idea. In the cartoon, two fish are swimmingide by side deep in the ocean, engaged in conversation. Inhe middle of their discussion one fish says to the other, “So,hat’s this water everyone is always talking about?” The

eason to ask questions, paint mental pictures, challenge theerson’s stated and underlying assumptions as I identifyhem is to help the person break out of the limits of hisersonal perspective. If I can help free the person from whaties him to the past, there is a good chance of facilitatingecision-making better fitted to the present realities andotential outcomes of his high-risk situation.

Further, I link the notion of courage with the possibilitiesor hope in any person’s particular set of circumstances.ourage has been defined with respect to such existentialist

ssues as death, anxiety, and meaninglessness with thehrase, “in spite of.” A person finds the courage to livedespite” or “in spite of” that which threatens his existence1]. I see my work as helping a patient in his personaltruggle to actually act, to decide despite the specific threatso his life, to his capabilities in life, to the continued mean-ngfulness of his life. A good reframe about a patient’s risksan alter his estimation of potential gains. Courage to actay not be unrelated to hope about a perceived change in

dds between potential gains and losses. Hope can alsoome despite a truly awful medical picture or certain death.y job sometimes is to help build hope around outcomes

ther than a cure or personal survival.From experience I have learned that the kind of personal

resence I establish in my time with a patient makes aifference in our working relationship. I know that a “goodresence,” whatever that means for a given situation, willromote at the least an emotional atmosphere of calmnessnd safety. For someone who may be experiencing fear,nternal chaos, doubt, and pain, that atmosphere is essential,long with the sense I create that my presence is solid, thatcan be counted on to “be there” for the person in an

nduring way. One practical significance of this setting ishat if we are meeting to make something good actuallyappen, the chances are increased that we will remain fo-used on the tasks at hand.

I want the patient to tell me about himself. I want him toaint me a picture of his pain and his dilemma. His pictureells me who he is, what is important to him, his under-tanding of what is happening in him, what may happen andhat he wants from me. I want him to talk about theossibilities and probabilities of outcomes. Through thisarrative account, I can get a graphic sense of his psycho-ogical state that is a direct effect of his appraisal—cogni-ive and emotional—of potential threat. A patient will telle his story with specific emphases in order to have an

ffect on me, to have me get it about the problem and getim with respect to how powerfully this impacts his life andts personal meanings. I was deeply affected when Marciarought visual aides: mirror-imaged head/face diagrams

ith her pain pattern detailed in bright reds and pinks; a s

-inch screw bolt or a picture of barbed wire to indicatehat the pain felt like; actual photographs of necrosing

issue and holes in her mouth and nostrils. I was affected.hat I do now that I did not do earlier in my career is to let

he patient see, if it is true, that they touch me. In this wayhe patient can feel less alone in the experience and moreopeful about professional care and caring.

I regard my ability to get a handle on how any particularatient thinks as the key to producing change. In all myxperience I cannot recall a patient laying out for me how hehinks. Specifically, however, how he is thinking about thisroblem in his life at this time has much to do with how herames the nature of the threat and how that drives his levelsf anxiety. To the patient, his psychological state may looknd feel like an anxiety problem. He may be highly anxiousbout potential outcomes; he may have paralyzing levels ofnxiety about the anxiety. Steve, for example, knew he hado unlock his mind before indecision and the passage of timeesulted in decreased options and, quite realistically, deadlyonsequences. He could not decide; anxiety seemed to behe problem. But Steve did not have an emotional problem.e had a thinking problem [2]. What I mean by a thinkingroblem ranges from the limitations and egocentrism of aerson’s world-view and personal perspectives on particularife concerns to distortions of logic, unrealistic assumptions,nd extreme negative cognitions. I can diagnose an anxietyisorder, suggest the patient take Xanax, and direct him toalmly rediscuss his options and odds with his surgeon asoon as the medication allows. What I have observed clin-cally, however, is that the emotions wane as the manner ofhinking shifts. The patient, for example, may be thinking inatastrophic terms. Adrenalin is pumping to arouse the bodyhysiologically to face the danger that is imagined. But audden reappraisal of the threat level can occur cognitively.elief is obvious. The reduction in anxiety is palpable. Itertainly looks as if a well-timed, realistic reframe can throwhe switch controlling the secretions in the HPA axis [3].

In the end, I look for the patient to come to personallyeaningful terms with his dying or his potential loss. This

s so whether or not he actually dies from the medicalondition or suffers the feared loss or change. I find thathen this shift in thinking occurs, the weight of the poten-

ial loss does not seem so great, the tendency to give ex-reme weight to unlikely outcomes subsides, and the abilityo focus on potential gains is enhanced. Becoming moreriendly with the idea of one’s dying is more than a home-ork assignment for therapy. Changes in meanings and in

hinking generally lead to changes in emotional states. I findhat helpful for making big decisions in high-risk situations.

o gamble

There are several aspects of some patients’ psychologicalxperiences about which I have not commented: rage, de-

pair, guilt, sense of abandonment, blame, helplessness,

sulDa

ltpdmtsnwd

mpcwTctd

itpsosf

foh

R

[

[

[

[

[

678 M. Beasley / Urologic Oncology: Seminars and Original Investigations 26 (2008) 674–678

uicidality, loss of control, loss of independence, loss ofsual identity or sense of self or bodily image, loss of trust,oneliness and isolation, and embarrassment, to name a few.ecisions are often made in the context of these feelings

nd self-perceptions.Those aspects I did discuss were selected because they

end themselves to influence by professionals working withhe patients in a decision-making context. For example,atient risk-taking can ride on trust and hopefulness engen-ered with the sense the doctor “gets me,” a subjectiveeasure of a sort that, beyond technical competence, par-

icular care will be taken for my well-being, specifically. Aseen with Steve, catastrophizing [4] tends to wane as new,on-absolute, personal conceptual frames develop; other-ise, the initial assumptions can become the greatest hin-rance to the decisions the patient needs to work toward.

Paul measures net gain and loss of actual and potentialedical outcomes with admirable facility from a “working”

ersonal frame of reference that seems fitting for eachoncrete situation. However, many of the persons withhom I have worked are focused strongly on potential loss.heir anxiety is about the threat of that loss; their panic [5]omes from their personal appraisal that neither they norheir doctors have the control or the capability to prevent

isastrous loss. On a number of occasions, I have been

mpressed with the power of a simple reframe of their oddso dissolve a near state of panic. The new frame, for exam-le, might be, “Based on your account of what your doctorsay, it seems to me there is reason to regard your odds ofverall gain as at least as great as your odds of loss.” That’still 50/50. Medical professionals are in a unique position torame the picture realistically with a focus on the positive.

Finally, Marcia’s story suggests that the moment ofound hope that keeps you in the game does not have to bef the everything-will-be-all-right variety. Sometimes “justope” is good enough to gamble on.

eferences

1] Tillich P. The courage to be. New Haven (CT): Yale University Press,1952. p. 3.

2] Beck A, Emery G. Thinking disorder in clinical anxiety. In: Anxietydisorders and phobias: a cognitive perspective. New York: BasicBooks, 1985. pp. 31–4.

3] van der Kolk B, McFarlane A, Weisaeth L. Traumatic stress: theeffects of overwhelming experience on mind, body, and society. NewYork: Guilford Press, 1996. pp. 222–3.

4] Burns D. Checklist of cognitive distortions. In: When panic attacks.New York: Broadway Books, 2006. p. 16.

5] Beck A, Emery G. Panic disorder. In: Anxiety disorders and phobias:

a cognitive perspective. New York: Basic Books, 1985. pp. 107–14.