When Worlds Collide: When Research Becomes Reality

Debra Parker Oliver, MSW, PhD

My husband is positively the most wonderful man in theworld and for almost half my life he has been my best

friend and soulmate. Our life has been a fairy tale, a love story,perfect. That is, until one day last fall, when we were hit by ameteor. Our family’s world was forever changed as the love ofmy life was diagnosed with Stage IV terminal cancer. Thatday marked the beginning of a paralyzing pain and loss thatappears in moments throughout each day. At times it takesmy breath away and literally I am unsure how to manage thenext minute. I tell myself that we can do this, that we are betterpositioned than most. Yet, the privilege of my background,knowledge, and skill has only heightened my awareness ofthe tremendous struggles for caregivers and their lack ofsupport across health care settings.

My first professional job was in a volunteer hospice pro-gram in rural Minnesota, when Medicare certification wasonly a dream. I worked for 15 years as a hospice social workerand administrator in two hospices. For the past 13 years I havebeen a hospice researcher. I have written nearly 100 peer re-viewed journal articles and carried out millions of dollars offunded research focused on hospice caregiving. With thisexperience and knowledge it is fair to say few people wouldbe more prepared to face a terminal cancer diagnosis for theirloved one, at least theoretically. Additionally, I’m fortunate tobe surrounded by compassionate caring family physicians in aschool of medicine; I have a network of palliative care pro-fessionals across the world, and a research team who are myclosest friends. I am blessed to have a former student, a sea-soned palliative care social worker, who has become my un-official social worker during my darkest time. (Strange how Ihear my own words coming from her.) On top of theseblessings, my husband and I have excellent health insuranceand financial security. Most importantly, we have a loving,successful, and readily available support team of five amazingadult children along with an unending supply of love andsupport from an extended family and countless friends readyand willing to do anything they can to help. And still I was andcontinue to be unprepared for the reality of it all. In spite of allof these blessings, I am in shock, at a loss, and struggling toface it. I have often asked myself how much worse it must befor others in this situation. What if we worked at a job wherewe punched a time clock, what if we were in a strange com-munity and did not know anyone, what if we had no insur-ance, what if we had no children and few friends and family?

Despite having walked the long end-of-life journey withhundreds of people in hospice, I did not get immunity, nor has

what I’ve learned as a researcher assuaged my fears as acaregiver. My husband and I are now experiencing the on-cology prehospice experience, and recently, palliative care(only because I insisted, not because of a referral, of course).While not yet appropriate for hospice care, my husband willbe a hospice patient in the future. I find that I am not only aresearcher of caregivers, I am a caregiver. Everything I haveread, everything I have observed, and all I have witnessed as asocial worker and researcher now hits home in a way I neverexpected, it is me, it will be me. A person can read it, see it,hear it, and yet not feel it, until it is you. I am shocked, stunnedand saddened to be living my life’s work.

Blessings and a Curse

I have found that on top of the overwhelming emotionssurely felt by anyone who lives this experience, I am addi-tionally blessed and challenged with the blurring of my pro-fessional and personal roles. After years of learning how tobalance personal and professional expectations, today thereare no differences; for me they have become one. My normal,rational, thinking, problem-solving approach to life and workhas collided head on with the emotion and the meaning of allthe data I collect, all the research I review, all the interventionsI plan and test. My work began in 1980 with a passion to carefor the dying and their family members; now it will becomemy life preserver.

I’ve been asked how my work experience has impacted thejourney and caregiving experience. As one might expect it isboth a blessing and a curse. The lessons hospice families havetaught me on how to track finances, how to write downmedications, how to advocate, what to expect, all have been ablessing. I am thankful for families whose journey I haveshared and whose deaths I have been privileged to witness.Likewise, the years of explanations by hospice nurses andphysicians on the treatment of pain, and the progression ofdiseases, have mediated my fears of these things. Havingwitnessed it so many times, I know the beauty of the very endof life and the love and joy that can be experienced.

On the flip side of the equation, my realism about thecourse of the disease and the chances for any kind of curativetreatment are based on the same stories and research I havedone on the inaccuracy of prognoses and overtreatment withchemotherapy and radiation. The number one regret I haveheard from hospice patients and families is that they wishthey had found hospice sooner, regretting that the fight fortime was at the cost of quality of living. Trust is hard to come

MU Family and Community Medicine, Columbia, Missouri.

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by when as a palliative care professional you don’t witnessmuch cure, but instead witness much regret about overtreat-ment, failed attempts, and wasted time.

I face a unique fear as a result of my professional experi-ence. A fear I think that only those in palliative care can un-derstand. I fear that my husband and I will fall victim tofalse hope and optimism that is prescribed by zealous well-intentioned physicians fighting against this disease. Insteadour goal is about quality of life which allows us to makememories, accomplish final wishes, and cherish our family,without pain and as little suffering as is possible. I worry thatin an attempt to manage the disease we will make a wrongdecision or neglect to ask the right questions and end up withour final days filled with clinic visits, futile treatments, and amyriad of the resulting side effects. While thankful and sur-prised with the shrinking of cancer cells from the first round ofchemo (despite my total disbelief that it would work), I amindeed just as terrified, perhaps even more so, that when thedisease reappears and we are encouraged to go anotherround, the hell of the treatment will not outweigh the benefitsgained. My biggest fear is that we will lose precious qualitytime chasing after what medical professionals outline as lifelengthening treatment.

Finding a Way to Cope

Like so many patients and families, my husband and I havehad no formal psychosocial support in this process, no socialworker, no counselor. So, using a self-induced social workapproach I have looked to past coping experiences to find away through this situation. I quickly realize that my pattern isto turn to work; in it I have always found a diversion, a refuge,a way to focus on a bigger meaning and be thankful for myblessings. Now, more days than I care to admit, my workbrings out the emotion of my personal life, making it raw,sometimes causing suffering, often causing emotional pain.There have been days when simply sitting in my office is toopainful as I am surrounded by books and papers on thechallenges I face daily and even more so, the challenges Iknow lie ahead.

As I continue to reflect on my inventory of coping skills, Iam aware of another way I deal with stress: intellectualiza-tion. Give me a problem and I’m quick to head to the literatureand learn everything possible about it; knowledge is power,that’s why I am a Researcher. However, this time, I learn inonly minutes that any intellectualization of nasopharyngealcancer with widespread bone metastasis exacerbates the suf-fering; there is nothing comforting in the literature on thisdiagnosis. Knowledge in this case brings only fear of the re-ality of what will come. As a result, any intellectualization hashad to be done at a snail’s pace, as the mind and soul cantolerate only tiny doses of reality.

Initially, I found myself desperate for new coping strate-gies. I knew that to survive even a couple weeks I had to dosomething. I envied my husband and one daughters’ ability touse denial; I craved the ability to have some way of facingeach day. After agonizing over it, I found coping strategiesthat have saved my soul. First, I knew I had to find somethingpositive. While I don’t consider myself anything but a realist,the reality here is crippling; it brought no peace of mind, infact it hurt like hell. To combat the pain I began forcing myselfto find something to be thankful for every single day. In

hindsight, just review the list that leads this essay, it shouldhave been simple. However, in the midst of despair and fear ittruly was not easy. Making a public declaration, I committedto posting the daily thankful thoughts on Facebook. For onemoment each day I was forced to think positive and it gave mepositive energy and strength.

A second strategy came from the book Anatomy of Hope:How People Prevail in the Face of Illness,1 loaned to me by myformer student and now informal social worker. Ironically, Ihad written an article on hope years earlier,2 but I was nothaving luck finding any! In reading, I learned to find smallpieces of hope step by step. I discovered that for the first timein my life I needed to focus only on what I knew to be sure andtrue. As a chronic planner I had to throw away my tendencyand need to take control through planning. I needed to focusmy goals, plans, and life around much smaller steps. For thistime in my life, control does not come in planning, but ratherin trusting in the next step. Initially, I had to get through thefirst chemotherapy treatment. Then I had to manage threeweeks until the second treatment, and so on. When a step wastoo big to handle I broke it into smaller ones. When in despairthis strategy might only involve making it through a meeting,a single day, or the night, whatever I felt I could manage. Eventoday in the continuing drama I only take incremental stepsand break the day into hours that feel manageable. Now I livePET scan to PET scan, every three months, and my hope lies inmy newfound ability to break things down into manageablepieces.

I have also learned a very important coping technique frommy husband: the value and importance of teaching what weare learning. With this mission he is creating a legacy andopening a public dialogue, one which I have advocated formy entire professional career (www.dbocancerjourney.blogspot.com). As his partner I have been following that lead.It is not a natural thing for me to share my personal life in apublic way; after all, I am not trained to have the focus on me,but rather to focus on others.

Sharing and teaching while facing these challenges hasgiven both of us a sense of purpose, and this is why I write thispaper. As a former hospice social worker I have been privi-leged to witnesse the real world of dying and sometimes be atthe bedside of a patient; as a researcher I understand the im-portance of gathering data about caregiving; but now I feel theemotion and pain in the depths of my soul, now I have insightinto what it all means.

Lessons to Learn

I share my story in hopes that health care providers willremember there are two patients in this drama. The differencebetween the one dying and the one providing care is thatcaregivers usually are silent about their needs. Silent becausewith only a limited amount of time in a doctor’s office, thereare far too many patient issues to worry about caregiverconcerns. Silent because the emotional pain and practical fearcaregivers experience can be so great that if anyone opens thedoor, too much emotion will spill out. Despite my social workknowledge, I have a personal fear that even the best profes-sionals would have a hard time dealing with that amount ofemotion. Silent because it seems too selfish to complain orexpect attention when the person you love most in the worldis in physical distress. Silent because no one really asks, and

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no one really convinces you they really want to know howyou really are doing. Silent because there may not be anyenergy left to share after you have been awake all night cryingand trying to quietly deal with what is happening.

A Challenge to Help

As a social worker I am aware of my profession’s struggleto gain respect as a key player on the health care team, and thestruggle to interact equally with other team members. I haveinterviewed hundreds of social workers and tried in my workto show their value and to represent their skills. I have wit-nessed their diminished roles and inequitable staffing rationsand salary, which result from a medically driven health caresystem, even in hospice. I have considered myself an advocatefor the profession, demonstrating value through research.

Given this new experience, I implore health care providersacross settings to remember the principles upon which palli-ative care and hospice were built, that the ‘‘unit of care’’ is thepatient AND the family. My professional experience as well asmy research, and now this personal experience, give me causeto believe that this basic tenet has been forgotten. Variousteam members may educate, teach, demonstrate, or even re-assure; however, from my experience there is no designatedcare provider for the caregiver. Caregivers seem to get what is‘‘left over,’’ the second thoughts. I challenge health care teamsto assign someone to embrace caregivers and assess theirsuffering, listen to their pain, teach them and arm them with

coping and problem-solving strategies. Be the caregiver’sadvocate. It is a role on health care teams, even palliative careand hospice teams, that no one has embraced. My bias is that Ibelieve social workers are best equipped to focus on thecaregiver and have the potential to be a caregiver’s anchorthrough this process.

And so, for now I once again remind myself, step by step,‘Don’t practice suffering,’ ‘Let’s find hope for a good day to-day.’ I hope that someone reading this will sit down quietlywith a caregiver, brave the floodgates to release pressure,offer empathy and understanding, and offer to walk thisjourney not only with the patient, but also with the patient’ssoulmate.

References

1. Groopman J: Anatomy of Hope: How People Prevail in the Face ofIllness. New York: Random House.

2. Parker-Oliver D: Redefining hope for the terminally ill. Am JHosp Palliat Care 2002;19(2):115–120.

Address correspondence to:Debra Parker Oliver, MSW, PhD

MU Family and Community MedicineMA306 Medical Sciences Building, DC032.00

Columbia, MO 65212

E-mail: oliverdr@health.missouri.edu

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