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Back to Introduction and Background Conceptions of Suffering

Role of Hospice, Palliative Care
Conceptions of Suffering

• Suffering as Fragmentation of Personhood
• Suffering as Broken Stories
• Suffering as a Challenge to Meaning
• Suffering as Total Pain
• The Broad Perspective on Suffering

Elements of End of Life Experience

Conceptions of Suffering

What does it mean to suffer? As a medical profession, and as part of a health care system, we must have a conceptual framework within which to work, study, and teach if we are to have a hope of relieving suffering. This is similar to other aspects of medicine—for each disease, each condition for which human beings seek assistance from the health care professions, there is a conceptual framework to investigate, understand, and intervene.

Suffering as Fragmentation of Personhood

• In an attempt to understand suffering in a way that would permit further study, understanding, and inform clinical care, Cassell outlined a conceptual framework for suffering

• He pointed out that "bodies do not suffer, only persons do"

• Persons are unique and do not experience a disease in the same way

• Persons suffer when their personhood is threatened

• Elements of what it means to be a person include having:

• A past
• A present
• An anticipated future
• A private life
• A role
• A transcendent dimension

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Suffering as Broken Stories

• Brody has built on the concept that personhood requires a past, present, and future by noting that human lives are, in a sense, stories

• Our story is our sense of self, and as we face dying, our story comes to closure. In so doing our story transforms into our legacy

• So often, when the patient comes to a physician, the emotional subtext of the patient’s complaint can be heard as, "Doctor, my story is broken. Can you fix it?"

• Much suffering by patients facing the end of life can be understood in this perspective

• The future looks different from before
• The present is consumed with new physical degeneration
• The patient’s private life is challenged by many new transitions, as is his or her usual role
• The transcendent dimension may take on a new meaning

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Suffering as a Challenge to Meaning

• Suffering is a challenge to meaning

• Facing the end of life may challenge our usual sources of meaning
• Loss of meaning is a form of suffering

• Meaning usually must be found in new ways when death approaches

• As you consider what you would list as the things that give you the most meaning and value in your life, think about how the prospect of disease might affect those

• Byock has described the nature of opportunity brought by suffering and facing the end of life

• These same aspects apply to a child who is dying. In addition to the suffering of the child who is seriously ill, the parents and siblings suffer as they face the loss of this child, and their shared sense of the future

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Suffering as Total Pain

• The experience of illness and suffering is not unique to each individual

• In listening to patients with advanced illness describe what their needs and expectations of the medical profession and health care system were for care, Cicely Saunders, founder of the modern hospice movement, conceptualized suffering as "total pain" and as having 4 elements

• Physical pain
• Psychological (emotional) pain
• Social (including practical) pain
• Spiritual pain

• As you reflect on the things that you value most, and those that would be most important to you in the face of a life-threatening illness, most of them probably fit into these 4 categories

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The Broad Perspective on Suffering

• All of the conceptions of suffering described here have one thing in common; they take a very broad perspective from which to view human existence

• As health care providers, it is important that we have a comprehensive framework from which to work if we are to relieve suffering and enhance quality of life

• Well-intentioned efforts that are too narrow in scope will miss the target

Example 1

Example 2

Example 3

• A physical complaint must always be given the physician’s attention, both in its own right and its related dimensions

• While each aspect of human existence is an integral part of who we are, undue focus on any once aspect may be detrimental (e.g., undue focus on a patient’s social disconnection, may distract a clinician from attending to physical needs)

• Based on the conceptions of suffering discussed above and a commitment to the broad perspective of human existence, this plenary will consider the elements of the health care system that may be able to relieve suffering and enhance quality of life

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