Getting a Grip

BY ROGER C. BONE, MD Reprinted with permission.

Unless we die suddenly through accident or heart attack, there will likely come a time when it is clear our days are numbered. What do we do then? This piece offers some practical guidelines for beginning the process of dealing with that reality. It comes from Reflections: A Guide to End of Life Issues for You and Your Family, distributed by the National Kidney Cancer Association.

A doctor who is dying shares his experience of how his family experienced the process of his terminal illness.

The English historian Arnold Toynhee wrote: "Ideally, every human being ought to live each passing moment of his life as if the next moment were going to be his last. He ought to be able to live in the constant expectation of immediate death and to live like this, not morbidly, but serenely." The inevitability of our own death is with us from a very young age. However, most individuals usually ignore or repress this knowledge. Going about life's work takes a tremendous amount of effort and standing around contemplating our mortality will not help pay the bills, rake the leaves, or lower our golf score.

I realized I was going to die on a beautiful October day in a medium-size Midwestern town. Although I am a member of the medical community, I learned of my prognosis like any other patient. My physician "got the x-rays back" and there was "bad news."

My "bad news" actually began twenty-two months earlier when an accidental fall in my home at Christmas led to the discovery that I had renal cancer. An operation for the removal of my right kidney, which contained an encapsulated tumor larger than an orange, was completely successful. I was discharged from the hospital after a week and returned to my position as President and Chief Executive Officer of the Medical College of Ohio four days later.

Nevertheless, my experience had changed me. I became more appreciative and reflective of the world around me. I shared my revelations during a speech at the Fall Convocation for incoming medical students. I advised them to balance the scientific with the humanistic. Students, like many of us, are caught up in the pressures of daily life and do not take time to savor the present much less contemplate death. I urged them to maintain close relationships with family and friends, to enjoy a Beethoven symphony, to read a good novel, and to take pleasure in a fine dinner.

But, on this October day, I learned from my physician that I had metastasis to both lungs and a positive bone scan. As a clinician and cancer survivor, I was always aware of this possibility; however, the reality was not easy to accept. There is denial, anger, and a sense of great loss.

I had to realize the observations I made to the students were still true:

1. Good health is often taken for granted; however, it is the most precious commodity one possesses.
2. One's spouse, children, family, and friends are the essential ingredients that allow one to endure a serious and unexpected illness.
3. When faced with death, one realizes the importance of God and one's relationship with God.
4. The things one does through one's life that seems so urgent are, most of the time, not so important. The day my metastasis was confirmed was, of course, very traumatic. The initial shock created anxiety and caused a flurry of activity among my business associates and office employees. What should they do?! What needed to be done and when?! Finally, I politely called a halt to all activity for the day. I told them I wanted to go home so I could simply sit and look at the river and spend time with my family.

Which is what I did.

Our house sits on a rather steep bluff and the Maumee River curves around a wide bend below us. The yard slopes gently to the edge of the bluff then descends through wildflowers and bushes to the banks of the river. Birds, squirrels and chipmunks populate this slope of land. On a quiet day, you can hear the rustling of the animals in the grasses. Occasionally, there will be a bird's song.

It was a perfect October day---the weather was sunny, the temperature measured 70 degrees, and a gentle breeze was in the air. The trees on both sides of the river were mostly green with only a hint of autumn reds and yellows. The river sparkled when stirred by the wind, and its course flowed in such a way that the sun seemed to set exactly on the water. It gave the appearance of a great fire being extinguished by the cool water.

I sat on a lawn chair and laid my suit coat and tie on the green grass beside me. At that moment, time stopped. My life-past, present, and future-was compressed into that second of time.

Time slipped past again and I looked up and saw my wife, Rosemary, standing next to my chair with a glass of lemonade for me; our daughter had just made a pitcher. I tasted the sweetness of the drink. The wind suddenly stirred the grass. A bird chirped. A small boat appeared far off in the river and became clearer as it made its way upstream.

I took Rosemary's hand and we stayed there a moment longer looking at the world passing before us.

Life has been good to me.

The American writers Thornton Wilder and Henry David Thoreau observed that most men and women lead frantic and desperate lives, seldom pausing to reflect on their activities. I am happy the initial diagnosis of renal cancer made me think anew about life and, therefore, consider the contemplative philosophies of both Wilder and Thoreau. One activity that has brought me peace is spending quiet time alone surrounded by nature similar to, I imagine, Thoreau contemplating Walden Pond.

Thoreau went to Walden Pond to search for his soul. There, in communion with nature, he found serenity and obtained fulfillment. He recognized and recorded for us a state of being in which one can come closest to the unity between nature and creation.

Thornton Wilder, nearly a hundred years later in his play, Our Town, emphasized the idea that most of us are blind to the everyday wonders of the world. The theme of his play is simple: life is short; be certain to take time to smell the roses. He pointed out that death can come quickly and without warning. When the terms of our existence are considered in this manner, the seemingly trivial things do appear more important. One moment you are young and married and the next thing you know the white-haired lady by your side is seventy and has eaten 50,000 meals with you.

However, my family and I had to get about the business of dying. There was no getting around it or avoiding it. Loved ones will be the first to provide you, the dying patient, with the most comfort. I have listed some issues you need to keep in mind when you first learn of your prognosis:

1. One or two family members will make enormous personal sacrifices to help you. Of course, a spouse will almost always accept an inordinate amount of responsibility. Do not be surprised if a daughter, a brother-in-law, or a cousin from Memphis suddenly steps forward and offers assistance. Be grateful and accept their support graciously.
2. Some family members, but especially friends, will perceive you differently, Even before you manifest outward signs of serious illness, they will behave awkwardly around you. You might consider this a patronizing attitude. It is best to ignore this change and treat them the same as you have in the past. They will come around to their normal selves when they recover from the shock.
3. Happily accept all gifts from family and friends. It makes them feel better and you might receive something you like and appreciate.
4. Don't be afraid to ask for time alone like I did when I sat gazing out over the river. We all need time to be with ourselves. Some individuals, however, become inspired and driven to fill their every waking moment as if they are trying to cram a lifetime into a few weeks or months. The frenetic pace is enjoyable at times, but only within reason. Peace and quiet can be just as gratifying and require less energy. You must remember to maintain your health by balancing social and business commitments.
5. Be your own counsel. None of us are 100% right — including our physician, our minister or other spiritual guide, our spouse, our family, our friends. It surprised me to discover that some people wanted to, in effect, "bully" me into making certain decisions once they learned I was terminally ill. This impulse may come from someone's own fear of dying. It is a response the patient must be alert to in order to diffuse the situation. A strong personality saying do this or don't do that can be hard to resist. What is important is to keep your own counsel. Consider alternatives. Ask others for advice. Make some telephone calls. Read some books.
6. Finally, slow down and ask your family and friends to slow down. There may not be a lot of time, but there is still a sufficient amount of it, in all but the most extreme cases, to think, plan, and prepare.

Nearly thirty years ago, Dr. Elizabeth Kubler-Ross wrote an enormously influential book in which she categorized the psychological changes terminally ill patients go through as they progress toward death. In On Death and Dying, Dr. Kubler-Ross delineates five stages: 1) Denial and Isolation, 2) Anger, 3) Bargaining, 4) Depression, and 5) Acceptance.

After the book's publication, this model helped family, friends, and caregivers better understand the mental states of terminally ill patients. Pediatric oncologists, ICU nurses, gerontologists, and other members of the medical community also gained important insights into the dying process. As a result, the hospice movement gained momentum and viability.

However, the "stages" theory has come under extensive criticism in the past decade. There have been an increasing number of claims that Dr. Kubler-Ross's paradigm is too neat and all-inclusive. A notable example is Dr. Sherwin B. Nuland's recent bestseller. How We Die: Reflections on Life's Final Chapter. Some patients, he asserts, never progress beyond denial. He writes, "The clamor of [the patient's] wish to live drowned out the pleadings of his wish to know."

Nevertheless, patients and their families can benefit from Dr. Kubler-Ross's discovery. There is value in having a "road map" for any trip and, as is usually the case, the final destination need not be arrived at by only one route.

The "trip" or "journey" metaphor for dying is as old as mankind. Greek mythology, for instance, depicted death as a dangerous voyage into the Hades underworld via the river Styx. The ancient Egyptians mummified the deceased and surrounded him with servants and material possessions, often including boats to aid him in his voyage to the afterlife. In Christianity, we speak of "going" to either heaven or hell. Wherever one believes he or she may end up, dying can be compared to a journey taken alone or in a crowd. It is similar to riding on a subway car during rush hour when, suddenly, everyone gets off except you.

One shocking irony about finding out you are terminally ill is that you may feel pretty healthy at the time. Although the initial diagnosis of renal cancer made me realize I was living on borrowed time, I can honestly say I was feeling as well as I have ever felt in my life when my physician told me I had metastasis of renal carcinoma. Unfortunately, as a critical care physician, I knew my good health would not last long and any treatment regimen I chose would be debilitating.

After the diagnosis, Rosemary and I traveled to a place that had been a favorite of ours in the past. The trip lasted only a week, but it was exhausting for us to get there and back. Yet, that vacation is now a special memory for us and we are grateful that we were able to go while there was still time.

Every terminally ill patient should make an attempt to do something personal and meaningful while he can. An around-the-world cruise may be out of the question. However, a visit to a favorite vacation spot, a childhood home, or, perhaps, to an old friend you have not seen in years may be feasible. These seem like such a natural and reasonable things to do. Yet, terminal patients suddenly have so many demands on themselves that such an excursion often never happens. A son or daughter who lives far away may want to come home for a couple of weeks. Or, you have treatment options, legal issues, or business demands to contend with first. Nevertheless, time away while one is still physically capable is tremendously valuable for peace of mind.

Business commitments are business commitments and require special consideration. I would like to define "business" very broadly here as any daily routine where there are continuing demands and expectations. I work as a physician and an academic administrator. In addition, I have numerous professional responsibilities, many of them related to my editorial roles on medical journals. Similarly, many terminally ill patients, young and old, create works of art, deliver newspapers, care for children, keep house, and participate in volunteer projects.

In all of these situations, there are two important factors that must be considered. First, there is the job itself that sooner or later must be done by someone else. A transition plan must be put in place. Secondly, employers and coworkers who only know you through work are usually not members of the private circle that consists of your physician, family, and friends. While they are no doubt sympathetic, their priorities may be dramatically different. You should not get upset because the position must be filled and the work completed by someone else.

The initial strategy the terminally ill patient must use in regard to work is honesty. There is no use covering up your condition for any longer than a few days at the most. Being honest is only fair to your employer, and there are practical issues to consider, such as the number of vacation and sick days you are entitled to, insurance benefits, and stock options.

I enjoy my work and find most of the tasks involved mentally gratifying. I would miss it if I suddenly retired or was forced to resign. As long as I am not impaired by either my illness or my choice of treatment, there is no reason why I should not continue pursuing my career interests.

Nevertheless, any occupation can become a difficult proposition for the person who suddenly has other important things on his or her mind. Seeking the advice of a trusted colleague or confidant at work may be a useful tactic. Use that person's judgment to determine your role and continuing viability in the organization. His or her advice may allow you to avoid any embarrassing confrontations.

It is important, however, for you to bring your career to a pleasant and satisfying conclusion. You may want to complete a special project or simply work until the end of the month. Whatever your goal, coming to closure at work is crucial for both yourself and your organization.

When my daughters were in college, the end of the academic year in the spring was always chaotic. Many parents know there are few events more hectic in life than moving their kids into or out of a dormitory room. Formal packing is seldom accomplished; there seems to be an endless number of laundry baskets of dirty clothes. Stereo speakers and tennis racquets are crammed into car trunks. There are frantic and tearful good-byes to both boyfriends and girlfriends.

Finding out the "bad news" from the "x-ray reports" is not quite the same scenario. However, there is a similar personal chaos and you suddenly feel that your life is like a car stuffed with loose ends and unpacked clothing. Like a college kid let loose for summer vacation, you may not know what is ahead but you know that the car is running and that you will soon be on your way.

The best advice is to take a deep breath, organize your thoughts, and put the car in gear.

©1997, National Kidney Cancer Association