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Keywords:

  • adaptation;
  • psychological attitude;
  • attitude toward health;
  • anxiety;
  • medical ethics;
  • interpersonal relations;
  • physician-patient relations;
  • decision

Abstract

  1. Top of page
  2. Abstract
  3. TWO KINDS OF HOPE
  4. Acknowledgements
  5. REFERENCES

BACKGROUND.

Hope is important to patients, yet physicians are sometimes unsure how to promote hope in the face of life-threatening illness.

ANALYSIS.

Hope in medicine is of two kinds: specific (hope for specific outcomes) and generalized (a nonspecific sense of hopefulness). At the time of diagnosis of a life-ending condition, the specific goal of a long life is dashed, and there may be no medically plausible specific outcome that the patient feels is worth wishing for. Yet the physician may nonetheless maintain an open-ended hopefulness that is compatible with the physician's obligation to be truthful; this hopefulness can help sustain patient and family through the turbulent period of adaptation to the unwelcome reality of major illness. As this adaptation evolves, the physician can help patients and families adapt to suffering and loss of control by selecting and achieving specific goals such as improvement of the patient's environment in hospital or hospice, pain control, and relief of sleeplessness. Thus hope for specific (but far more modest) future events can again become a positive part of the patient s emotional landscape. The authors do not propose that physicians remain upbeat no matter the circumstance, for they must respect the constraints of reality and the patients' mortality. However, physicians can provide both cognitive and affective support as patients learn how to adapt. Hope and hopefulness are both important in this process.

SUMMARY.

Hope is always important to patients. Physicians can and should promote hopefulness without endorsing unrealistic hope. Cancer 2008. © 2008 American Cancer Society.

That sick individuals need hope is widely accepted, but in a world of evidence-based medicine, there is no algorithm to show how the physician can help the patient find the right amount of the right kind of hope. Yet we believe firmly that there are better and worse ways to work with patients' hopes and argue that what we cannot prove to be true, patients and their families will tell us if we will only listen. Consider the following letter.

In June of 1982, my father lay dying in Stanford Hospital of non-Hodgkin lymphoma. It had been a very quick journey to this sudden end. He was 58 and had always been healthy, never ill, until he collapsed one morning, went to his doctor in Stockton, then to the hospital, then to the grave, all in a matter of 3 weeks. It was shocking, totally unexpected, and deeply traumatic.

His condition baffled all of his medical experts until a lung biopsy showed a rare and aggressive lymphoma. He was immediately put on chemotherapy but was already gravely ill. No one was hopeful. We knew the situation was dire, but we were not ready to give up. We were not ready to treat him as dead while he was still alive.

There was a young woman resident—we called her the Grim Reaper. I don't have to tell you what her stance on hope was. She had none and would allow us none. He was going to die; we needed to adjust. Fine, but we weren't ready yet, and was she God?

I didn't want her in his room and felt nauseated every time I saw her coming. I felt angry toward her for her position. It seemed cold and totally unnecessary. The fact that she was right in the end did not matter. It was her manner, her lack of empathy, her failure to understand our needs that bothered me.

At the same time, there was one particular young doctor—the head resident of the internal medicine team—who was extremely empathetic and understood that we needed to hold out some hope for a positive result, even if we knew that the chances of that occurring were quite small. Essentially, we agreed that ‘where there is life, there is hope.’ He more or less assured us—we were weeping, he had tears—that it was not possible to predict outcomes with medical certainty, that sicker people had recovered and left the hospital, and we were not out of our minds for holding on to some hope for a good result.

We needed very much to hear this at the time. We were not deluded. We did not hear this as meaning that it was likely that he would recover. We could see how sick he was, but we were in the middle of a nightmare and needed just a modicum of relief from the unbearable sadness of our situation. Patricia Serventi

This narrative speaks to the importance of hope at the time of an important life transition and to the suffering that physicians can cause when hope is seen as a delusion to be crushed. In this essay, we consider the nature of hope and offer some preliminary thoughts about how an understanding of hope may help physicians' daily work with patients. We begin with an exploration of 2 meanings of the word ‘hope.’

TWO KINDS OF HOPE

  1. Top of page
  2. Abstract
  3. TWO KINDS OF HOPE
  4. Acknowledgements
  5. REFERENCES

Hope may be either specific or generalized. Specific hope (or particular hope1) is the state of desiring a specific possible event or future state of affairs, which is called the hope object. Hope objects (goals2) reflect individuals' varying beliefs, value systems, and sense of possibility and vary over time as disease and treatment progress. Hope objects in the clinical context include not only prolonged life or cure but, as expressed by 1 oncologist, the hope to enjoy the color and richness of daily experience, to control pain, to be secure in the physician-patient relationship.3 Hope is distinct from faith, which, in the context of illness, is a belief that life, with its unavoidable loss and suffering, is always meaningful.

Specific hope varies along 2 dimensions: 1) desire, whose strength may range from tepid to intense, and 2) the perceived likelihood of the event occurring, ranging from very low to nearly certain.4 To qualify as a hope object, the desired event or state must be possible but not certain. The intensity of desire for a hope object is independent of the perceived likelihood of the event's occurrence, for one can strongly desire an unlikely event.

Generalized hope is described by Dufault and Martocchio as the sense that there is some future beneficial but indeterminate development that is broad in scope and is not linked to a particular concrete or abstract object.1 In Helft's words, generalized hope is simply a sense of ‘open-endedness.’5 This is what the Serventi family needed as they hoped for any pause in the onrush of disaster. These 2 distinct meanings of hope help explain how some physicians impart hope to despairing patients and families even when the chance of a good outcome is small.

Many of life's challenges can be understood in terms of the need to abandon 1 goal or hope object and find something else with which to replace it as a form of salvage.2 The adolescent whose vision is too poor to be a pilot, the man whose beloved spurns him for another, the couple who cannot conceive a child: all must abandon cherished hope objects. Each of us must accept a loss and find something new to hope for many times over our lifetime. The suddenly foreseeable extinction of our own life is among the greatest of our losses of hope, and we turn now to the interaction between patient and physician in this existential crisis.

Bad News and a Crisis of Hope

The physician, as a diagnostician, often conveys bad news. However, the physician's role in breaking bad news should not eclipse the patient's role in hearing and responding to it,6, 7 because it is the patient who must learn and grow, whereas the physician plays only a supportive role.

Patients and their loved ones normally experience the onset of life-threatening illness as an evolution, not a single event,8 beginning with the first suggestion that something is awry, continuing to diagnosis, to the patient's and family's adaptation to that diagnosis, and on to their changed lives. Yet we believe there is usually a moment at which the reality of the bad news first dawns on the patient, and that moment is often during a conversation in which the physician formally provides a diagnosis or prognosis. This conversation has at its heart 2 components, disclosure and salvage.

The physician first describes the patient's diagnosis and prognosis, steering a middle path between ‘undue bluntness or misleading optimism.’9 The patient needs sufficient information to understand the situation, at least at a basic level, and to participate in necessary decision making. Standard legal doctrine emphasizes the importance of the factual information conveyed during these discussions,10, 11 but patients place great importance on the physician's attitude and the manner in which he or she conveys this important news.12, 13

We believe that most physicians follow bad news with attempts at salvage—statements intended to reduce the impact of the bad news and help the patient and family cope with a life-altering diagnosis, such as reassurance that there are still treatments that may prolong life and control symptoms. These, in effect, are suggestions that the patient adopt new hope objects (in this example, symptom control and noncurative treatment). We believe that the physician should not expect most patients to accept these encouraging suggestions immediately; some time must pass before a patient can abandon a primary (if unconscious) hope object—continued life—and substitute an inferior but realistic hope object, such as adequate quality of life. The physician must allow time for the patient to accept these reduced hopes. To do otherwise (and this was one of the Grim Reaper's faults) may allay the physician's own anxiety and discomfort more than it serves the patient's current needs.

Physicians can help by focusing the discussion not on nebulous long-term goals but on what can be accomplished now. The physician who sets and achieves specific goals contributes to the patient's physical and emotional comfort and alleviates patient and family anger and anxiety. In the hospital, the physician can practice this ‘medicine of the possible’ by controlling pain, barring unwanted visitors, ensuring adequate sleep, keeping the room quiet, and eliminating unnecessary interruptions (eg, vital signs at midnight and 4 AM). Interventions of this kind, undertaken in response to the patient's stated needs, give patients and families a modicum of control in a setting in which loss of control otherwise seems absolute.

Some physicians eschew hopefulness and attempt to ensure that the patient and family are fully aware of the horror they face. The Grim Reaper in the introductory letter is a prototype of this model, with her toxic insistence that the family embrace the harsh reality of their dire situation. We do not know her reasoning, but her stance clearly was unwise at the outset, and she should have changed it once it became clear that she was increasing the family's suffering. No physician should appear to be death's eager attendant.

Hope and Acceptance

After receiving bad news, the patient enters a turbulent period of attempted accommodation to dramatically changed life circumstances. This period may end in denial, in anger, or in acceptance.14 We do not believe that acceptance is the only valid way to face death6 or that patients who reach acceptance are superior to those who do not; however, acceptance is often an optimal outcome for patients and their families.

The patient who reaches acceptance has integrated the illness and the limitations it imposes by establishing new priorities and finding a renewed sense of purpose.2 This process is usually a challenge that requires personal growth on the part of the patient, perhaps assisted by family, friends, spiritual advisors, and the physician. Acceptance cannot be done to, or for, the patient; the patient must do it.

The work of acceptance can be framed in terms of transition of hope objects. The prior implicit hope for a long life must be converted to an explicit hope for some extension of life; the previous freedom from discomfort must be traded in for efforts of unknown efficacy to reduce symptoms. This substitution of hope objects is indeed painful. There are some patients who accept news of a life-ending illness with equanimity, but they are unusual; most patients and most families suffer in the process. Patients who succeed not only may accept the alternative hope objects offered by the physician but may find purpose in new hope objects, such as focusing on an eternal life to come or recording a video history of their life for a grandchild to ensure a legacy that will be remembered.15

From the time of disclosure onward, we hypothesize that the physician can bolster patient and family hope by offering specific, alternate hope objects in the hope that patients and families will consider and eventually accept them and by maintaining an open-ended, hopeful attitude—although the situation is grim, there is always hope that things will turn out better than expected. Medicine is an inexact science; the timing and nature of biologic events always retain an element of unpredictability.

Here, we focus on the cognitive aspects of hope management, but we also want to emphasize the profound importance of the behavioral and affective components—of the physician recognizing and responding to the patient's emotional condition.12 When the physician forms an empathic emotional connection with the patient, it conveys an unspoken but important message of caring; the physician's steady presence is an almost physical shelter in the emotional storm that often accompanies impending death.

Promoting hope does not mean keeping patients upbeat even when things are going badly, nor does it mean preventing patients from ever experiencing sadness: The news that one has a life-threatening illness or that an existing illness can no longer be controlled provokes grief that cannot be prevented and that the physician should not dismiss or try to suppress. At some point, weeks or months down the road, most patients reach a new equilibrium in which the new condition has become the status quo, the changed expectations no longer cause grief, and the patient once again hopes for a better tomorrow. Physician awareness of the roles of hope and hopefulness may help in the journey.

Acknowledgements

  1. Top of page
  2. Abstract
  3. TWO KINDS OF HOPE
  4. Acknowledgements
  5. REFERENCES

We acknowledge the invaluable assistance of the Hope Working Group in discussing the concept of hope, including the authors of this article; Karen Brisch, JD and Kristin Van Hook, MD, MPH; the insightful comments of an anonymous peer reviewer; and the contribution of Patricia Serventi, who shared the compelling story of the care received by her father and her family during his last and only illness and who granted us permission to publish and discuss her letter.

REFERENCES

  1. Top of page
  2. Abstract
  3. TWO KINDS OF HOPE
  4. Acknowledgements
  5. REFERENCES
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