Abstract
My first professional job was in a volunteer hospice program in rural Minnesota, when Medicare certification was only a dream. I worked for 15 years as a hospice social worker and administrator in two hospices. For the past 13 years I have been a hospice researcher. I have written nearly 100 peer reviewed journal articles and carried out millions of dollars of funded research focused on hospice caregiving. With this experience and knowledge it is fair to say few people would be more prepared to face a terminal cancer diagnosis for their loved one, at least theoretically. Additionally, I'm fortunate to be surrounded by compassionate caring family physicians in a school of medicine; I have a network of palliative care professionals across the world, and a research team who are my closest friends. I am blessed to have a former student, a seasoned palliative care social worker, who has become my unofficial social worker during my darkest time. (Strange how I hear my own words coming from her.) On top of these blessings, my husband and I have excellent health insurance and financial security. Most importantly, we have a loving, successful, and readily available support team of five amazing adult children along with an unending supply of love and support from an extended family and countless friends ready and willing to do anything they can to help. And still I was and continue to be unprepared for the reality of it all. In spite of all of these blessings, I am in shock, at a loss, and struggling to face it. I have often asked myself how much worse it must be for others in this situation. What if we worked at a job where we punched a time clock, what if we were in a strange community and did not know anyone, what if we had no insurance, what if we had no children and few friends and family?
Despite having walked the long end-of-life journey with hundreds of people in hospice, I did not get immunity, nor has what I've learned as a researcher assuaged my fears as a caregiver. My husband and I are now experiencing the oncology 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 will be a hospice patient in the future. I find that I am not only a researcher of caregivers, I am a caregiver. Everything I have read, everything I have observed, and all I have witnessed as a social worker and researcher now hits home in a way I never expected, 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, stunned and saddened to be living my life's work.
Blessings and a Curse
I have found that on top of the overwhelming emotions surely felt by anyone who lives this experience, I am additionally blessed and challenged with the blurring of my professional and personal roles. After years of learning how to balance personal and professional expectations, today there are no differences; for me they have become one. My normal, rational, thinking, problem-solving approach to life and work has collided head on with the emotion and the meaning of all the data I collect, all the research I review, all the interventions I plan and test. My work began in 1980 with a passion to care for the dying and their family members; now it will become my life preserver.
I've been asked how my work experience has impacted the journey and caregiving experience. As one might expect it is both a blessing and a curse. The lessons hospice families have taught me on how to track finances, how to write down medications, how to advocate, what to expect, all have been a blessing. I am thankful for families whose journey I have shared and whose deaths I have been privileged to witness. Likewise, the years of explanations by hospice nurses and physicians on the treatment of pain, and the progression of diseases, have mediated my fears of these things. Having witnessed it so many times, I know the beauty of the very end of life and the love and joy that can be experienced.
On the flip side of the equation, my realism about the course of the disease and the chances for any kind of curative treatment are based on the same stories and research I have done on the inaccuracy of prognoses and overtreatment with chemotherapy and radiation. The number one regret I have heard from hospice patients and families is that they wish they had found hospice sooner, regretting that the fight for time was at the cost of quality of living. Trust is hard to come by when as a palliative care professional you don't witness much cure, but instead witness much regret about overtreatment, failed attempts, and wasted time.
I face a unique fear as a result of my professional experience. A fear I think that only those in palliative care can understand. I fear that my husband and I will fall victim to false hope and optimism that is prescribed by zealous well-intentioned physicians fighting against this disease. Instead our goal is about quality of life which allows us to make memories, accomplish final wishes, and cherish our family, without pain and as little suffering as is possible. I worry that in an attempt to manage the disease we will make a wrong decision or neglect to ask the right questions and end up with our final days filled with clinic visits, futile treatments, and a myriad of the resulting side effects. While thankful and surprised with the shrinking of cancer cells from the first round of chemo (despite my total disbelief that it would work), I am indeed just as terrified, perhaps even more so, that when the disease reappears and we are encouraged to go another round, the hell of the treatment will not outweigh the benefits gained. My biggest fear is that we will lose precious quality time chasing after what medical professionals outline as life lengthening treatment.
Finding a Way to Cope
Like so many patients and families, my husband and I have had no formal psychosocial support in this process, no social worker, no counselor. So, using a self-induced social work approach I have looked to past coping experiences to find a way through this situation. I quickly realize that my pattern is to 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 my blessings. Now, more days than I care to admit, my work brings 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 too painful as I am surrounded by books and papers on the challenges I face daily and even more so, the challenges I know lie ahead.
As I continue to reflect on my inventory of coping skills, I am aware of another way I deal with stress: intellectualization. Give me a problem and I'm quick to head to the literature and learn everything possible about it; knowledge is power, that's why I am a Researcher. However, this time, I learn in only minutes that any intellectualization of nasopharyngeal cancer with widespread bone metastasis exacerbates the suffering; there is nothing comforting in the literature on this diagnosis. Knowledge in this case brings only fear of the reality of what will come. As a result, any intellectualization has had to be done at a snail's pace, as the mind and soul can tolerate only tiny doses of reality.
Initially, I found myself desperate for new coping strategies. I knew that to survive even a couple weeks I had to do something. I envied my husband and one daughters' ability to use denial; I craved the ability to have some way of facing each day. After agonizing over it, I found coping strategies that have saved my soul. First, I knew I had to find something positive. While I don't consider myself anything but a realist, the reality here is crippling; it brought no peace of mind, in fact it hurt like hell. To combat the pain I began forcing myself to find something to be thankful for every single day. In hindsight, just review the list that leads this essay, it should have been simple. However, in the midst of despair and fear it truly was not easy. Making a public declaration, I committed to posting the daily thankful thoughts on Facebook. For one moment each day I was forced to think positive and it gave me positive 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 my former student and now informal social worker. Ironically, I had written an article on hope years earlier, 2 but I was not having luck finding any! In reading, I learned to find small pieces of hope step by step. I discovered that for the first time in my life I needed to focus only on what I knew to be sure and true. As a chronic planner I had to throw away my tendency and need to take control through planning. I needed to focus my goals, plans, and life around much smaller steps. For this time in my life, control does not come in planning, but rather in trusting in the next step. Initially, I had to get through the first chemotherapy treatment. Then I had to manage three weeks until the second treatment, and so on. When a step was too big to handle I broke it into smaller ones. When in despair this strategy might only involve making it through a meeting, a single day, or the night, whatever I felt I could manage. Even today in the continuing drama I only take incremental steps and break the day into hours that feel manageable. Now I live PET scan to PET scan, every three months, and my hope lies in my newfound ability to break things down into manageable pieces.
I have also learned a very important coping technique from my husband: the value and importance of teaching what we are learning. With this mission he is creating a legacy and opening a public dialogue, one which I have advocated for my 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 a public 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 has given both of us a sense of purpose, and this is why I write this paper. As a former hospice social worker I have been privileged to witnesse the real world of dying and sometimes be at the bedside of a patient; as a researcher I understand the importance of gathering data about caregiving; but now I feel the emotion and pain in the depths of my soul, now I have insight into what it all means.
Lessons to Learn
I share my story in hopes that health care providers will remember there are two patients in this drama. The difference between the one dying and the one providing care is that caregivers usually are silent about their needs. Silent because with only a limited amount of time in a doctor's office, there are far too many patient issues to worry about caregiver concerns. Silent because the emotional pain and practical fear caregivers experience can be so great that if anyone opens the door, too much emotion will spill out. Despite my social work knowledge, I have a personal fear that even the best professionals would have a hard time dealing with that amount of emotion. Silent because it seems too selfish to complain or expect attention when the person you love most in the world is in physical distress. Silent because no one really asks, and no one really convinces you they really want to know how you really are doing. Silent because there may not be any energy left to share after you have been awake all night crying and trying to quietly deal with what is happening.
A Challenge to Help
As a social worker I am aware of my profession's struggle to gain respect as a key player on the health care team, and the struggle to interact equally with other team members. I have interviewed hundreds of social workers and tried in my work to show their value and to represent their skills. I have witnessed their diminished roles and inequitable staffing rations and salary, which result from a medically driven health care system, even in hospice. I have considered myself an advocate for the profession, demonstrating value through research.
Given this new experience, I implore health care providers across settings to remember the principles upon which palliative care and hospice were built, that the “unit of care” is the patient AND the family. My professional experience as well as my research, and now this personal experience, give me cause to believe that this basic tenet has been forgotten. Various team members may educate, teach, demonstrate, or even reassure; however, from my experience there is no designated care provider for the caregiver. Caregivers seem to get what is “left over,” the second thoughts. I challenge health care teams to assign someone to embrace caregivers and assess their suffering, listen to their pain, teach them and arm them with coping and problem-solving strategies. Be the caregiver's advocate. It is a role on health care teams, even palliative care and hospice teams, that no one has embraced. My bias is that I believe social workers are best equipped to focus on the caregiver and have the potential to be a caregiver's anchor through 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 today.’ I hope that someone reading this will sit down quietly with a caregiver, brave the floodgates to release pressure, offer empathy and understanding, and offer to walk this journey not only with the patient, but also with the patient's soulmate.