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The Losses and Suffering of Terminal Illness

2000; Elsevier BV; Volume: 75; Issue: 2 Linguagem: Inglês

10.4065/75.2.197

1942-5546

Paul Rousseau,

Empathy and Medical Education

The losses of man are a burden to his existence.Anonymous The obligation of physicians to relieve human suffering is universal, particularly when death is imminent and the indignities of our final moments on earth consume every waking moment. This honored encumbrance transcends all other duties accorded physicians and is paramount to a dignified death. Lamentably, many physicians are ill-prepared to care for dying persons, in part because of a tangible lack of understanding of loss and suffering, fear of death and confrontation of one's own mortality, poor preparation in end -of-life care in medical and surgical training programs, and the prevalent belief that death of a patient is medical failure, the latter somehow insinuating that we will all live forever and death will remain a nebulous yet distant aberration. But we all do die, and as Nan Goldin, a noted hospice photographer, has astutely affirmed, “The only thing that separates me from the dying is time.”1Andre D Brookman P Livingston J Hospice: A Photographic Inquiry. Little, Brown & Co Inc, Boston, Mass1996: 52Google Scholar Unfortunately, the dying process can be a time of great loss and suffering. As noted by Baumeister,2Baumeister RF Meanings of Life. Guilford Press, New York, NY1991Google Scholar illness can obliterate assumptions about the world and precipitate a grievous sense of isolation, brokenness, and loss of meaning. The challenge of losses that accompany a terminal illness can devastate both the person and the person's family as they confront the confusion and anguish of approaching death. And while the losses of terminal illness are many, 4 losses are notable: physical and intellectual, social, emotional and psychological, and spiritual.3Storey P Knight CF UN1PAC Two: Alleviating Psychological and Spiritual Pain in the Terminally 111. American Academy of Hospice and Palliative Medicine, Gainesville, Fla1997Google Scholar Such losses are illustrated by a change in familial, social, and occupational status, less self-control of daily events, diminished privacy, reduced physical and sexual functioning, physical loss of a body part, spiritual frustrations, and loss of hope for the future.4Rousseau PC The physician's presence during the dying process.Clin Geriatr Med. 1998; 14: 11-12Google Scholar However, the reaction to loss is individual and manifests itself in relation to the dying person's past, personality, values, outlook on life, perceived sense of threat to self,3Storey P Knight CF UN1PAC Two: Alleviating Psychological and Spiritual Pain in the Terminally 111. American Academy of Hospice and Palliative Medicine, Gainesville, Fla1997Google Scholar religious faith and affiliations, and cultural history. Regrettably, physicians are often unable or reluctant to intervene in relieving the indignation of loss and instead relegate the person to a disease (“the lung cancer in room 24”), falsely abolishing the necessity of ministering to the individual and the losses of a terminal illness. Moreover, physicians may inadvertently abandon terminally ill persons because they feel impotent in response to impending death, further devaluing the dying person and exacerbating the incalculable losses, including the physician's own sense of loss. Physicians must acknowledge that there are no answers to many of the questions and losses of dying persons and that their mere attendance relays a sense of caring, concern, and compassion. And while discerning the meaning of life may be impossible, physicians can promise to face illness together with the dying person and accept and realize that silence and empathic listening are two of the greatest forms of communication. Also, nurses, social workers, clergy, and volunteers are valuable colleagues who can help the physician with this burdensome and difficult task and assist in assuaging the losses of death.4Rousseau PC The physician's presence during the dying process.Clin Geriatr Med. 1998; 14: 11-12Google Scholar But aside from the losses the dying person feels, family members and friends also endure losses. Such reactions to losses are part of grieving and healing during and after the death of a loved one and include physical sensations, cognitions, behaviors, and feelings.3Storey P Knight CF UN1PAC Two: Alleviating Psychological and Spiritual Pain in the Terminally 111. American Academy of Hospice and Palliative Medicine, Gainesville, Fla1997Google Scholar These familial reactions are illustrated by loneliness and a sense of helplessness, fatigue and asthenia, difficulty concentrating, social withdrawal, dreams about the ill or deceased person, appetite and sleep disturbances, and depression, mood changes, and irritability.3Storey P Knight CF UN1PAC Two: Alleviating Psychological and Spiritual Pain in the Terminally 111. American Academy of Hospice and Palliative Medicine, Gainesville, Fla1997Google Scholar Physicians can assist families with grieving and loss by listening, educating themselves and families about loss and the tasks of grief (ie, accepting the reality of the loss, experiencing the pain of the loss, adjusting to an environment without the deceased, and emotionally relocating the deceased and moving on with life), reassuring that such feelings are normal, and encouraging attendance at bereavement support groups.3Storey P Knight CF UN1PAC Two: Alleviating Psychological and Spiritual Pain in the Terminally 111. American Academy of Hospice and Palliative Medicine, Gainesville, Fla1997Google Scholar When losses are distressing and traumatic, they can destroy the integrity of the person and engender suffering. As so poignantly defined by Cassell.5Cassell EJ The relief of suffering.Arch Intern Med. 1983; 143: 522-523Crossref PubMed Scopus (35) Google Scholar, 6Cassell EJ The nature of suffering and the goals of medicine.N Engt JMed. 1982; 306: 639-645Crossref PubMed Scopus (1190) Google Scholar, 7Cassell EJ The Nature of Suffering: And the Goals of Medicine. Oxford University Press, New York, NY1991Google Scholar suffering occurs when illness threatens the intactness or wholeness of the person. Moreover, Cassell5Cassell EJ The relief of suffering.Arch Intern Med. 1983; 143: 522-523Crossref PubMed Scopus (35) Google Scholar, 6Cassell EJ The nature of suffering and the goals of medicine.N Engt JMed. 1982; 306: 639-645Crossref PubMed Scopus (1190) Google Scholar, 7Cassell EJ The Nature of Suffering: And the Goals of Medicine. Oxford University Press, New York, NY1991Google Scholar described a person or personhood as involving many aspects, including a personality and character, a past, a cultural background, various social and occupational roles, relationships with others, regular behaviors, a body, a secret life, a political being, diverse activities, a transcendent dimension, and a perceived future. When violated, these attributes contribute to suffering and the manner in which an individual exhibits suffering. Although suffering can occur in relation to any aspect of the person.5Cassell EJ The relief of suffering.Arch Intern Med. 1983; 143: 522-523Crossref PubMed Scopus (35) Google Scholar, 6Cassell EJ The nature of suffering and the goals of medicine.N Engt JMed. 1982; 306: 639-645Crossref PubMed Scopus (1190) Google Scholar, 7Cassell EJ The Nature of Suffering: And the Goals of Medicine. Oxford University Press, New York, NY1991Google Scholar most physicians interpret suffering as a physical symptom such as pain. Such misunderstanding ostensibly derives from Rene Descartes's attempt to resolve philosophical differences between science and religion, allowing science to escape the control of the church by separating mind and body.6Cassell EJ The nature of suffering and the goals of medicine.N Engt JMed. 1982; 306: 639-645Crossref PubMed Scopus (1190) Google Scholar7Cassell EJ The Nature of Suffering: And the Goals of Medicine. Oxford University Press, New York, NY1991Google Scholar Thus, the anachronistic mindbody separation assigned the noncorporeal, spiritual domain to the church and the physical domain to science. Unfortunately, such segregation diminished the concept of person and contributed to neglect of nonphysical suffering. Such suffering is all too common and can occur with destruction of several nonphysical elements of personhood, including social roles, group identification, the relationship with self, body, or family, or the relation with a transpersonal, transcendent source of meaning.6Cassell EJ The nature of suffering and the goals of medicine.N Engt JMed. 1982; 306: 639-645Crossref PubMed Scopus (1190) Google Scholar7Cassell EJ The Nature of Suffering: And the Goals of Medicine. Oxford University Press, New York, NY1991Google ScholarThe introduction of hospice in the 1970s once again focused medical care on the whole person and encouraged strategies to characterize and address physical and nonphysical suffering. However, if physicians are uncomfortable or unable to adequately manage and assess nonphysical aspects of the terminally ill person, allied health staff and clergy should be consulted to provide valuable assistance. In closing, the care of terminally ill persons is arduous for many physicians, but as physicians, we are obligated to make dying persons' final months, weeks, days, and hours as fulfilling, comfortable, and peaceful as possible. Physicians must address the concerns and symptoms of persons approaching death but understand that there are no answers for many of the questions surrounding the dying process. The mere presence of the physician, embodied in the concept of nonabandonment, will provide trust and solace for many persons and encourage consolation and may offer partial resolution of the losses and suffering that accompany the dying process. But we must remember that it is not as physicians that we meet the sufferer but rather as persons that we encounter the presence of other persons who suffer.8Gregory D English JC The myth of control: suffering in palliative cure.J Palliai Care. 1994; 10: 18-22PubMed Google Scholar