Although Lessons from Joan is not a “how to” book, I am aware that some reading this book are, as Joan and I were, engaged in responding to their own or a loved one’s life-threatening illness. Drawing on Joan’s and my experiences, these appendices present lessons and selected tools for negotiating cancer or other life-threatening illnesses.
Appendix A briefly summarizes lessons for negotiating the health care system and for living well with cancer or other life-threatening illnesses. Two essays-one authored by Joan’s sister Catherine Fernbach and myself, and the other by my daughter, Johanna-are included because they illustrate these lessons.
Lessons For Negotiating The Health Care System
Experience is often the best teacher, even if you are not seeking knowledge. Unfortunately, Joan and I were taught quite a bit during our thirty-two months of negotiating the health care system. Since each person’s experience is unique, what may have worked for Joan or me is not necessarily right for others. Still, I summarize some practical lessons here, thinking they may be beneficial to some.
Understand that you are in a marathon, not a sprint. When a cancer diagnosis is made, the tendency is to want to do something about it. Right away! But as we learned, it was important to take time to understand treatment options, to select an oncologist, to seek second and third opinions, to collect our emotions, to put supports in place for our children and ourselves.
Take time to explore carefully treatment choices. Get second and third opinions. Especially during initial diagnosis, it’s important to take a deep breath and not rush into treatment without being sure that necessary diagnostic information is complete. Try to keep as many options open as possible. Understand that outstanding physicians may not always have the knowledge that highly specialized docs at regional cancer centers have. As was the case for us, a surgeon like Dr. Fong, who may perform 150 liver surgeries annually, may be able to do liver surgeries that excellent general surgeons would not consider possible. Understanding this, knowledgeable and secure physicians welcome the insights and suggestions of other reputable specialists. If your treating doctor is not open to second or third opinions, then you may want to find another doctor.
Information is your friend, especially good information presented in ways you can hear. It is difficult to hear that you have cancer, or that you are no longer in remission, or that there is a “suspicious” finding. Waiting for test results is difficult as they may confirm suspicions of a major health problem. For many of us, these are periods of great anxiety and fear. In the face of such information, ignorance may seem like bliss. But lack of information robs you of opportunities to effectively treat a disease, limits choices about how to use your time, takes away opportunities to share some of life’s most intimate moments with those you love.
There are many ways of gathering information-from health care providers, from others who have walked down similar paths, from the Internet (see appendix B) and research journals. Assess what information you need to make good choices. Assess how you would like that information given to you. Do you want to receive test results as soon as possible (for example, a “cold” read from a radiologist right after a CT scan)? Do you want to know the survival data or not? Think about whether you might benefit from gathering information available on the Internet. Talk with your health care providers. Be clear about your needs. Be clear that while information is your friend, it may not always be correct.
You are not a statistic. The data that yield estimates of survival time, progression-free survival, or reoccurrence are based on past research. The data refer to averages. You are not an average; you are a person. No one can predict how long you will live or what the outcomes of an intervention will be. You may (or you may not) find knowledge of survival data useful to your decision making. But, no matter what, do not treat yourself or allow yourself to be treated as a number.
Learn to ride the “roller coaster.” In the world of cancer, at least the part of that world that we inhabited, we learned that things are often not as bad as they at first seem. Conversely, often they are not as good as they might appear. Expect many ups and downs.
Bite your tongue, cool your heels, keep your eye on the target. Before Joan’s illness, I was much quicker to anger when kept waiting for long periods of time for an appointment or when faced with inconsiderate treatment. Now that the stakes were high, however, I learned to pick and choose my battles carefully. I also recognized that physician schedules are not easily maintained. The extra time an oncologist gives to a patient at a crucial time or that a surgeon spends to complete surgery may throw off their schedules. Sometimes you or a family member are that patient that needed the extra time.
In most situations, it is not going to help you (or the person you love) to be defined as a problem. There are, of course, times when you need to be assertive or take a strong position. Rule of thumb: think it through and, to the extent possible, be measured in your response.
Consider participating in clinical trials. Before making treatment decisions, be sure to explore whether you might benefit from a clinical trial. Learn about available trials, the promise of the interventions being studied, and relative risks. Remember, just as there may be risks associated with participation in a trial, there may also be risks associated with bypassing the opportunity to participate.
Don’t assume that health care providers “don’t care.” Or that biomedical researchers are not concerned about their patients and others suffering from disease. It’s easy to stereotype health care providers, especially researchers, as cold and unfeeling. No doubt some are. But mostly they are human, like you and me. Some are emotionally distant, often a means to defend against the pain that comes when a patient does not do as well as they hoped. Some nurses may appear rushed, even brisk, not having enough time to fully engage the physical and emotional needs of patients. Unfortunately, they often are rushed not because of a lack of concern but due to the extraordinary pressures on nurses in today’s managed care environment. Truth is, most would rather have more time for patient care. As for people involved in research, while they are committed to caring for individual patients in their studies, the source of their commitment often comes from deep desire to find ways to ameliorate, cure, or prevent harmful diseases.
The trade-off between treatment and quality of life may not always be what you anticipate. Avoid dichotomous thinking about the implications of treatment. Aggressive interventions do not necessarily compromise quality of life. Doing nothing may actually compromise quality. Or there may be compromises, and, assessed against the alternatives, you may deem them acceptable.
Keep good records and communicate. Maintain a running record of your illness history, from diagnoses through treatments. Encourage health care providers to be in contact with each other and to share information. (See appendix B for examples of tools we used.)
Bring an extra set of ears to critical meetings with health care providers. Under the best of circumstances, it is difficult to absorb medical information, and it’s even harder when the information you are taking in raises your anxiety. If you are in the midst of diagnosis or critical treatment decisions, it is often beneficial to ask someone you trust to join you at critical meetings, to listen, to take notes, to be a little more dispassionate than you might be.
Be tenacious. Gather information. Contact people who may be of assistance to you or your loved one. Assume that you can access needed treatments. More often than not, where there is a will, there is a way. And as they say, “You can gather more bees with honey than with vinegar.”
Consider using an advanced directive or health care proxy. Everyone bears the risk of being in a position in which they are unable to give verbal directions about the type of treatment they want or do not want. Whether young or old, healthy or ill, having a will in effect is always a good idea. Similarly, regardless of health status, it is a good idea to have an advanced directive about the type of care you would like and/or designating someone as your proxy in the event you are unable to give expression to your views. Also, you should be familiar with the implications of and your own feelings about the use of “Do Not Resuscitate” (DNR) orders.
Have someone stay with you at the hospital. Hospitals are busy places. They are also lonely places. No matter how good the care, it’s often helpful to have someone to run errands, to keep track of scheduled medications, to keep you company, to advocate on your behalf if necessary.
Do not hesitate to say “thank you.” It is important for health care providers to understand that patients and families value what is being done for them. Joan was very appreciative of care provided at Crouse and intended to write a note of appreciation, an intent that led her sister Catherine Fernbach and I to give expression to Joan’s and our appreciation in a letter to the Syracuse Post-Standard:
“Health Care That Worked To The End”
Eric Kingson and Catherine Fernbach
Our family understands how important competent health care is for patients and their family members living with a life-threatening disease. And, as the 15-part newspaper series “Living with Dying in America” highlights, we also understand how needed and valued compassionate end-of-life care is, by those who die and family members who live on.
Joan Fernbach Kingson was diagnosed with metastatic colon cancer in October 1998. She underwent several major surgeries and many chemotherapies in Syracuse, New York, at Memorial Sloan-Kettering Cancer Center in New York City and at the University of Massachusetts Medical Center in Worcester, Massachusetts. She did not receive the 5, 10 or 30 extra years that she sought, but she did receive the two most important years in her and our lives, time that was very well cherished and used. And six months past her death, while we remain very sad, we are immensely grateful for the type of care she received from the beginning to the end of her cancer.
You learn a lot when you spend as much time as we have in health care settings with someone you love.
We saw highly committed and extraordinarily busy medical researchers, oncologists, surgeons, nurse practitioners and others listen carefully to their patients and communicate with respect. You learn the importance of trusting dedicated oncologists such as Syracuse’s Tony Scalzo and Sloan-Kettering’s Nancy Kemeny. You learn that highly skilled surgeons can be very human in their interaction with patients and families; that aggressive experimental interventions can improve quality of life; that little kindnesses of secretaries, physicians, nurses and parking lot attendants matter.
We saw, firsthand, how hard nurses and nurses aides work. Seven or eight patients (sometimes 10 on weekends) assigned to a nurse or nurse’s aide may not sound like much to the layperson or, sadly, to those financing our health care systems. But when you have patients with complex needs, the responsibility is-as Joan would say-“daunting.”
We saw care that reflects deep respect for the dignity of patients and family. Like Joan, at some point during our lives, nearly all of us will be challenged to accept the help of family, friends and “strangers” with the most personal types of care. Joan did not feel diminished, and could accept-sometimes even enjoy-this care because it was given freely and with respect.
After a thirty-one day admission, Joan died in room 4005 at Syracuse’s Crouse Hospital, comfortably and without fear, in the arms and hearts of family and friends. She received the finest care possible from “Four-South’s” nurse-practitioner, nurses, nurses’ aides, chaplains, social worker, maintenance staff, secretaries and volunteers. And, as was always the case during her 32-month illness, the oversight and care from physicians, nurses and other medical professionals was first rate, in every way.
Joan truly was not afraid of dying. Given the progression of the cancer, she saw death as a release from, as she put it, “this bag of bones” and as a welcomed transition to a different place.
A few days before dying, she asked that all treatment, including hydration and nutrition, be stopped and that things only be done to keep her pain free and comfortable. Rather than go home to die, she chose to stay in Crouse Hospital. She was and our family is thankful for a health care system that worked for her. And we greatly appreciate that Crouse Hospital allowed room 4005 to be her and our last home together.
We lost someone we deeply love. Days, weeks and now months have past. Reflecting on her illness and last month, we recognize that this loss was made immeasurably easier by the type of care Joan received, especially at the end of her life.
Eric Kingson lives in Syracuse, New York, and is Joan’s husband. Catherine Fernbach lives in Somerville, Massachusetts, and is Joan’s sister. Joan Fernbach Kingson, MED, BSN, was a child-life educator and taught about working with children and families in health care settings.
Lessons For Living Well With Cancer
Cancer and other life-threatening illnesses, uninvited teachers, leave those they visit with new understandings of what’s important and at the core of the human experience. I’ll discuss some of these lessons now, ending with a speech by our daughter, Johanna, where she passed on to students at her high school what she learned from how her mom handled her illness.
Self-help is good, but don’t blame yourself. The self-help literature is replete with suggestions for preventing, warding off, curing, and learning to live with many illnesses. Joan and I read some of the books on dealing with cancer. They were often helpful. And I believe Joan’s walking and positive approach to living in spite of the cancer added time to her life. Such activities certainly added quality.
However, some self-help approaches imply that not only can you cure your illness but that it is somehow “your fault” if you do not. Joan greatly resented and rejected this message. As she might say, “Look, you can live well, exercise, eat lots of broccoli, and have a good outlook and still die from cancer!” She was similarly clear when told that she “failed chemo.” “No,” she would say, “Chemo failed me.”
You can control the little things, and they matter. Truth is, many of the big things in life are out of your control. You may not be able to prevent your company from closing or cancer from striking. But you can control your responses to such events. And, as my cousin Jim Kramon mentioned, there are many little things in life you can control: taking time with your loved ones, looking up to enjoy passing clouds on a warm summer day, or going to a baseball game, play, or concert . . .
Learn to accept care from those you love. It’s a gift to you and to them. Learning to give, to care for others, is an important part of our development as human beings. As infants, we depend entirely on others. By adulthood, more often than not, we give more than we receive as parents, as members of our community. Some people, like Joan, excel at giving to others but have difficulty accepting the care of others. Over the course of her illness-and without loss of strength, dignity, or humanity-Joan learned to accept, even at times enjoy, the care of health care providers, family, and friends. Her comfort and grace in accepting care with appreciation was a gift that brought her closer to her caregivers.
Take care of yourself and your family. No surprise: being confronted with a life-threatening illness is extraordinarily stressful. Whether you are diagnosed with such an illness or giving care to someone who is, find ways to care for yourself and those you love. Embrace small pleasures, pace yourself, develop good relationships with health care providers, and “don’t sweat the small stuff.” Find humor wherever you can. You and those around you need it more than ever. Humor and laughter may not cure cancer, but they can give expression to and reinforce a healthy spirit. Accept and acknowledge the concern of family and friends. And consider seeking professional support for you and your family from chaplains, therapists, and other counselors.
Kindnesses-large and small-matter to you and matter to others. Simple kindness, like humor, gives expression to and reinforces the human spirit. The nurse who kissed Joan’s forehead in advance of a feared procedure or the physician who gave Joan his tie as she neared death touched us in special ways. Joan’s capacity to get outside her pain, to move beyond her anxiety, and to engage with interest the concerns of some of the nursing students, aides, and others giving care-even as she approached death-touched others deeply. Life-threatening illnesses challenge the understandings and rhythms of our lives. Kindness, given and received, provides the opportunity to transcend human suffering and find meaning in the capacity of the human spirit to endure.
Leave a videotape, letter, or other message for those you love. As someone who lost his father at age thirteen, I have often hoped, even as an adult, to find a note from him: some advice about life, some stories of importance to him . . . In contrast, I have deeply appreciated my mother’s forethought in leaving a long letter for her sons. And Joan’s eloquent video good-bye is part of her treasured legacy to our family. Consider leaving a message for those you love. By the way, you don’t have to be ill or proximate to death to do this.
Do not underestimate the effects on kids of a parent’s illness. As I look back on this time and think about how threatening and ultimately devastating the loss of a parent is, I wish we had better prepared Aaron and Johanna for the depth of the loss they would experience. We, especially Joan, tried. But we were also invested in maintaining some normality to their high school years, maybe too invested. And, while not keeping any information from them, we did not want to rob them or ourselves of the hope that we might have many years in front of us. No suggestions for others here, just the observation that no matter which route is chosen, the pain and sadness that children must bear when a parent dies runs very deep.
Recognize some special “opportunities” that are a by-product of cancer. No, I am not suggesting that cancer and other life-threatening illnesses are gifts: just that they provide opportunities and insights you would not normally have. There are potential advantages of having the blinders of everyday life-the fantasy that keeps awareness of our impermanence at bay-ripped away by a cancer diagnosis. Everyone born goes down life’s path to death. Some arrive there sooner than others. Some live better because they recognize the limitations that life brings. Cancer can provide people with the opportunity to reflect on the meaning of their lives, to renew their commitments, to grow in ways never expected, to have time to repair relationships, to say full good-byes to those they love. Growth and learning and teaching do not stop with a cancer diagnosis, not even with death’s approach. Joan learned much in her thirty-two months of cancer, especially about how loved and worthy of love she was. She taught much to our family and others-about dying, living, and courage, about the endurance of the human spirit.
Living in hope trumps fear. Fear is not an unreasonable response to a cancer diagnosis, especially advanced cancer. Mark Twain observed that he spent much of his life worrying about things that never happened. Similarly, living in too much fear-even when reality-based-can ruin the time you have, time that may stretch out to decades.
In the course of Joan’s cancer, we learned to live in hope. Living in hope is not synonymous with blind denial, with sticking one’s head in the sand. Hope, as Gussie Sorensen first suggested, evolved over the course of the illness, from hope for a cure, to hope for remission for extra time, to hope for a “good” death. Joan’s appreciation of her walks, our children, her friends and books were expressions and outgrowths of the hope. My pleasure in her smile, her humor, and courage part of the hope. And hope drove our faith in good lives for our children and the permanence of our union. There was still much fear, but we learned that living in hope gave us much life, more than we could ever have expected.
Johanna’s Talk to Her High School
Johanna gave this speech in March 2002 before an assembly of students at her high school as part of a fundraiser for Camp Good Days and Special Times, a camp for kids and families that have experienced cancer.
My mother was diagnosed with colon cancer in September of ’98. Given the severity of her diagnosis, it seemed unlikely that she would live beyond six months. My mother made the choice not to focus on what had happened to others with similar diagnoses but to instead approach this battle as an individual. It was this attitude that allowed her to live much longer than any physician could have predicted. I would often hear her say, “I am doing my darndest to buy whatever time I can as long as I can maintain a high quality of life.” It was in her last years that she derived the most meaning from her life and was able to deeply touch the lives of so many.
My mother was able to accomplish so much in her last years because she chose to spend them living rather than dying despite her failing body. Her ability to teach, love, and provide for others, while simultaneously struggling with fears incomprehensible to most, is what made her truly remarkable. She did not shut out or withdraw from the world, though at times that seemed like the easiest escape. Instead she chose to open herself up and share her struggle with so many. Her incredible strength gave her the ability to expose her weaknesses to others, which, believe me, was one of the hardest things she was faced with in her lifetime. For those of you who don’t know my mother, she was a person who was always giving and, at times, she was annoyingly unselfish. She learned to allow people to take care of her and was able to accept this help. For someone who was so proud and independent, this did not come easy. I can honestly say that caring for my mother was the most rewarding experience of my life, and I am so grateful to her for giving me this opportunity.
I want to share with you all a passage that my mother wrote in her diary shortly after she was diagnosed. “I am learning so much about how many people really respect who I am and how I’ve lived my life, including people I really respect. I want to fight for time to love and respect what they are responding to in myself, from within myself. [I want] to use that strength and centeredness without question, reserve, or lack of confidence.” This reminded me that she was not remarkable for having cancer but for choosing to live as she did with that cancer. She is an example that while we cannot control the amount of time we are given, we do have full control over what we chose to do with the time we have.
Throughout my mother’s illness, there were so many people who helped my family in an endless number of ways. Every person was and is appreciated, and their kind gestures meant
a great deal. I know that it can be very awkward to approach someone who is dealing with a trauma or who is grieving a loss. People often worry about saying the wrong thing or about not being able to find the perfect words. Well, there are no magic words to take away somebody’s pain, but showing your support and telling someone you are there for them, whenever needed, provides a comfort and sense that you will stick by them and share their hard time. This may be exactly what that person needs to hear. All of my friends are and were so won-derful to me, and I am forever grateful to them.
If you are ever faced with befriending a person through a difficult time, whether it be cancer or a different challenge, it will help for you to know that it is people’s kind gestures and support that are remembered. Though you may not think a person wants you to bring up their situation, it is more important for them to know you are there and will remain present in their life no matter what. My mother would often write about how different people related to her. She wrote about one of her physicians that “he helped me simply by being who he is.” I believe that we can all learn from her example. No matter what life brings, there are always choices. My mother has taught me to embrace the challenges that life brings, because good can come from even the toughest of situations.
Eric Kingson
