Introduction to Prognosis:

Cure, Control, Coexistence, Escape

After a diagnosis of cancer, a patient’s immediate concern is the question of prognosis. Decades ago, when cancer fatality was high, this concern was often posed as a single question: How long do I have? In today’s more positive world of cancer therapeutics, prognosis is no longer a question of time, but instead is one of opportunity. So, the one question becomes four: Can my cancer be cured? If not cured, can it be controlled? If it can’t be controlled, can I coexist with the cancer without treatment? If life becomes impossible, can I limit suffering and escape?

Prognosis: Cure, Control, Coexistence, Escape will organize and discuss prognosis by goal and opportunity: to cure, to control, to coexist, and to escape. The more familiar rendering of prognosis—curable, incurable, transitional, and terminal--overlaps with these terms, but refers to the cancer treatment goal rather than the global life challenge. Two of these terms, incurable and terminal, are needlessly weighty and ominous, and patients have felt branded by them or fearful of them. They are poetically very forceful terms and capture the terror an earlier era brought without capturing the modern opportunity. This book presumes that at every point and every prognostic circumstance, humans adapt in remarkable ways and, as such, is a profile of heroic human adaptation.

While framing the prognostic opportunities and profiling the heroic response is some improvement over earlier formulations, it still risks making cancer the central fact of one’s existence. I have reminded more than a few patients to “Remember, we are doing all this so you can live, not just so you can beat cancer or be a cancer hero.” Perhaps the clearest depiction of prognostic opportunity should include this ultimate goal of life, of living. If one’s life is lost in the process of diagnosis and treatment, we have not been clear and empathic enough about the goal beyond all goals.

In the table that follows, the complexity of each prognostic milestone is depicted, emphasizing the best responses possible, along with common pitfalls. When cure is possible, the treatment may be extremely aggressive and disruptive for a time, justified by the possibility of total eradication. More than a few have concluded that in the midst of side effects, the cure is worse than the disease. But the psychological goal here is hope: the patient must seize the real possibility that the cancer may never return. This hope reduces anxiety and strengthens the resolve to get through treatment. The spiritual challenge at this point is transformation to a more mature self through the experience. The opposite possibility is distortion and reduction of life to bitterness. The classic spiritual story of life disruption and transformation by an illness is the biblical story of Job. A modern counterpart, perhaps more spiritual than religious, is the story of Lance Armstrong, who was cured of Stage 4 cancer and went on to become a multiple winner of the Tour de France. His ultimate disgrace for cheating aside, this remains a staggering accomplishment in the context of the grueling treatments he survived and the ominous clinical situations he faced, including cancer which spread to the brain. His cheating and the ultimate exposure of his lies were punished in full. Yet, to face in one life a harrowing brush with death and debilitating intensive therapy permanently affecting muscle and nerve critical to an athletic career, then the grueling physical and psychological test of the Tours, and finally the utter disgrace and humiliation his cheating precipitated is so far beyond the average life challenge, it remains a testament to human resilience.

When cure is not possible, the goal is control. Arguably the greatest progress in cancer therapy in the last 30 years has been the development of treatments capable of inducing remissions short of cure.

In the past, if initial curative therapy failed, the prognosis in terms of time was limited. But in our era, a sequence of backup, non-curative treatments may buy months -or years--of quality life. As such, the order of treatment choice is from least disruptive to most disruptive, preferably with minimal side effects, allowing the patient to live with and despite cancer. Some patients in this state who have no symptoms may elect to defer therapy, taking advantage of their period without symptoms before introducing therapy that may have considerable side effects.

The psychological goal is transcendence: living above the cancer. It is not denial of cancer, for the patient is aware of the true nature of the situation and is under treatment. Instead, it is the ignoring of cancer and realizing that one has the strength to continue to complete the work of life. The negative psychological possibility is cancern (a play on the word concern), in which the continual presence of cancer becomes the singular obsession, as if one is living in a haunted body, where every ache brings the terror of progressive cancer.

The spiritual goal is enlightenment, for the patient living permanently in the presence of cancer can be fully awakened, perhaps for the first time, to mortality and the precious fragility of life. It is essentially the non-Hollywood ending, the denial of one’s fundamental desire to live a long life and the individual response to the situation. Few have written as compelling an account of this challenge as Gilda Radner did in It’s Always Something.

When patients have exhausted all therapies to control the cancer, they are in transition from therapy directed at the cancer to therapies directed at symptoms. That they no longer have meaningful options takes them beyond the control stage. Yet, many at this point are vital and may still be capable of a transcending the illness. The goal (and hope) at this transitional stage is symptom control or life without suffering. In other words, coexistence with the cancer. Some of the greatest advances in cancer therapeutics are with drugs to control symptoms. Judicious use of such drugs can buy precious time, sometimes higher quality time than during the anti-cancer treatment period.

Patients at this stage may transition from a work life to a retired life and may limit their roles in a number of ways in recognition of their symptoms. Although cancer treatments to address the whole of the cancer are no longer applicable here, if symptoms can be controlled with a focal application of treatment to shrink the cancer and alleviate a symptom, this is still appropriate.

The psychological goal here is grace, as one makes peace with life and death, in tension with bitterness and fear. The spiritual goal is divestment, as in “freely, freely you have received (life), and freely, freely give (life).” The biblical story of the patriarch Jacob represents fully conscious death and transfer of life and feelings to those who will survive him. Randy Pausch in The Last Lecture taught all who have read or heard his masterpiece the rich meaning possible when this state is faced.

When it is impossible to control symptoms without inducing extreme sedation, the patient has arrived at the final prognostic stage: escape. Decades of hospice care have increased awareness of end of life challenges. Although, years ago, the initial standard point of entry to hospice was a prognosis of six months or less, it is almost unheard of now for a patient with a prognosis of six months or less to enter the hospice stage. While some view this as a tragedy of denial, in which both patients and physicians conspire to create the illusion of hope in a hopeless situation by administering ineffective and potentially toxic therapies, the truth is complex. We live in a “good to the last drop” culture, in which the terminal state is not defined by time remaining but by function remaining. As long as the capacity for living remains, one is not terminal, nor do most patients feel terminal.

On the surface, this notion may sound controversial and out of touch with the work of Elizabeth Kubler-Ross, who did more than anyone else to map the psychological and spiritual landscape of death and dying. Yet, her axiom “to live until we die” perfectly defines the restrictive view of terminal. When life is reduced to a state of coma, with progressive loss of dignity, the ultimate goal is escape. And since the only escape is death, the actual goal is to facilitate death by active withdrawal of any therapies that may risk further loss of dignity. The goal becomes death without suffering. We are not at a point where euthanasia is morally or legally acceptable in all states, but the line between aggressively quenching all suffering resulting in respiratory suppression and death, and consciously euthanizing is a wide line in intent, but may be a blurred line when it comes to final clinical realities.

The face of death as the ultimate protector of human dignity and limiter of human suffering is still not broadly understood. For perhaps 99.9% of life, death is seen as a terrifying enemy. And for some patients, nothing can make death acceptable. Yet for many, the profound feeling of despair for a life so limited and filled with suffering can bring death to the point of being actually welcome. I recall seeing one woman, 78 years old, who had endured breast cancer for decades, just hours before her death. She had been a fighter and throughout remained certain of beating her cancer. Yet, in that last meeting, she lay with her eyes closed (they remained closed throughout) and was as clear-minded as any I have witnessed. She said simply, “Thank you, Doctor. Nothing more now. I just want to die. Truly, I just want to die. Thank you so much.” There was no bitterness, no despair. Just a turning to death as escape, with a deep and peaceful resolve.

Finally, in spite of this book’s efforts to clarify prognostic stages, doctors know that such information and categories may not necessarily be helpful. In fact, categories, even carefully defined, can be devastating. Some patients cannot live without the hope of cure and are sustained by that hope, whatever the objective prognosis or science predicts. Denial is not a psychological or character flaw for such patients. It is an effective coping strategy, and any attempt to force them to see their situation more objectively is simply not helpful until they begin to raise the issue of a negative outcome themselves. Yet, experience has taught me that the truth about broad prognostic categories is often missing in discussions between patients and doctors. Usually, however, this information is liberating.

Prognosis: Cure, Control, Coexistence, Escape is not a how–to book, but rather a series of observations on the capacity of the human spirit to adapt and even pursue life and happiness in the face of adversity. It is also the story of the grace that comes to most when that pursuit is no longer possible.

Definitions

The definitions of the four prognostic opportunities of cancer are:

1. Cure: In this situation, proven treatments are available for the complete eradication of all malignant cells from the body, and patients may live out their normal life expectancy. Embracing the hopefulness of their situation is the psychological challenge, and transformation to maturity through the experience is the spiritual goal.

2. Control: At this stage, treatment is not available that can totally eradicate the malignancy, but treatment is available that may control it. Some patients with incurable cancer may live out a normal life span and die with--rather than from-- cancer. The psychological goal is transcendence or living with, above, and in spite of the present cancer. The spiritual goal is enlightenment or full consciousness of mortality and the precious fragility of life.

3. Coexistence: Here, treatments to control the cancer become exhausted, and the goal of treatment is symptom control and control of medical problems arising from a progressing cancer. In other words, life without suffering. These patients often retire from some of life’s roles, yet may remain engaged in life--but with an acute awareness that they are approaching life’s end. The psychological challenge is to embrace the unique opportunity of conscious mortality, gracefully transferring life to those one cares about. One must look back to make peace with life and look forward to make peace with death. The spiritual goal is divestment.

4. Escape: No treatment is available that can control this stage of cancer. At this point, the patient is no longer able to transcend the cancer and carry on with meaningful life. The patient is usually semi-conscious and reduced to a limited state. The treatment goal shifts to comfort and support, with the active withdrawal of all treatments that may prolong the state of suffering. Essentially, death without suffering. The psychological challenge for the family, as much as the patient, is protection of dignity. The ultimate spiritual goal of terminal cancer is release: letting go.

Life Before Cancer

Before an illness can be life-threatening, there must be a life to threaten. What one’s life is before cancer not only defines the meaning of cancer but tends to set limits on what price one is willing to pay to get that life back. Reactions to the news of cancer can range from desperation to indifference. All seem to be traced to the opinion the patients have about their own lives before the diagnosis is given.

One of the longest and most interesting conversations I have had was with a woman with a lifelong history of severe, and at times psychotic, depression, who was diagnosed with cancer. She stated in cold, objective terms that for years she had wanted to die, and cancer would now let her die in a more legitimate way than suicide. Although she had attempted suicide in the past, she believed it was morally unacceptable. She was also quite concerned about her parents’ reaction to her situation. After a lengthy discussion, she could admit that refusal of therapy was form of suicide, but she still refused therapy. She was returned to the care of her psychiatrist and after further discussion agreed reluctantly to proceed with therapy.

One could view this as a ploy by a mentally disturbed patient and that the welcome mat she put out to cancer was evidence of psychosis. Perhaps she was trying to be unique, maybe even outlandish, in her response to the cancer to gain further attention. Yet her half-dead stare was convincing to me, and it was hard to believe that her life was anything other than a misery to be escaped.

Another less exceptional but very touching patient comes to mind as well. She was an attractive, well-preserved, 70 year-old woman, who was under treatment for lung cancer. She had undergone surgery and was receiving radiation therapy. She was refreshingly candid about life and considered suicide a perfectly acceptable option if the “quality” line she drew in her mind was crossed. In any event, she was willing to proceed with the intense treatment because there was a chance for cure, but she was quick to add that she wasn’t that desperate to live.

She related her other great life crisis to this one. She had lost her husband 30 years before and had a family to raise alone. She told me: “I remember the feeling then that I could just crumble, just go down in a heap. I also remember the feeling that I had to go on.” Now at 70, she didn’t feel as needed or as necessary to anyone. I asked about grandchildren, and she agreed she loved them but didn’t feel as necessary to them as she had to her own children.

She placed limits on the intensity of therapy and missed several sessions when she didn’t feel well. Again, I could be accused of taking her too literally-- and, in fact, she was depressed because of the cancer alone, and this rendered her whole life less meaningful--but I don’t think so. She was extremely realistic and clear: since she didn’t have to live (having no absolute responsibility), she wasn’t willing to pay any price for her life, and quality was as, if not more, important than quantity.

Another patient was a successful lawyer diagnosed with cancer, who, after the shock and tears that came with diagnosis, stated wryly, “To be honest, Doctor, I don’t have time for cancer.” He would go on again and again to prove this. After one harrowing experience – the collapse of a cervical vertebra requiring a cumbersome neck brace – he was discharged from the hospital on extremely strong pain medication. I called the next day to tell him about his low blood counts, and his wife told me I would have reach him at work. To him, cancer treatments were more like a pit stop than a disruption.

Another patient was an elderly woman with painful bone metastases who was always pleasant and appreciative. A therapist giving her treatment asked her once how she managed to stay so upbeat. “God gives me the strength I need to take care of my son,” she replied. Her son had severe multiple sclerosis and had been bedridden for years. It was unimaginable how this petite woman with tumor-riddled bones could care for anyone but herself.

Finally, life before cancer has a direct bearing on life during cancer even at the terminal stage. It is not uncommon for patients at this stage to be calm in their resolve, saying, “I’ve had a good life, and frankly, I’ve had enough.” There is great irony here. Those with rich and full lives may suffer the greatest loss and yet at the same time gain consolation from the richness of their lives. Those whose lives have been bitter or embittered may feel, in some way, they have “nothing to lose.” To end an unresolved life may be painful in the extreme, yet most patients with cancer have time to confront their demons and make peace with themselves.

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