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Kufe DW, Pollock RE, Weichselbaum RR, et al., editors. Holland-Frei Cancer Medicine. 6th edition. Hamilton (ON): BC Decker; 2003.

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Holland-Frei Cancer Medicine. 6th edition.

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Suffering in the Patient, Family, and Physician

, MD, , MD, and , MD.

In addition to meticulous attention to symptom assessment and management, an appreciation of the suffering of the cancer patient as distinct from the patient's disease or other distressing symptoms (eg, pain) is of paramount importance. Cherney and colleagues defined suffering as “an aversive emotional experience characterized by the perception of personal distress that is generated by adverse factors undermining the quality of life.” 54 They developed a taxonomy of factors that may contribute to distress among patients, families, and physicians. It is beyond the scope of this chapter to discuss these factors at length (Tables 77-5 to 77-8).

Table 77-5. List of Factors Contributing to Patient Distress.

Table 77-5

List of Factors Contributing to Patient Distress.

Table 77-8. Contributing Factors to Physician Distress in the Care of Dying Patients.

Table 77-8

Contributing Factors to Physician Distress in the Care of Dying Patients.

Table 77-6. Factors Contributing to Distress in Family Members.

Table 77-6

Factors Contributing to Distress in Family Members.

Table 77-7. Factors Contributing to Distress Among Healthcare Providers.

Table 77-7

Factors Contributing to Distress Among Healthcare Providers.

Caring for dying patients may be particularly stressful for medical oncologists whose professional goals and intellectual energies have been spent seeking curative therapies (see Table 77-8). 55 A survey of 81 general practitioners in France found that 86% agreed that encounters with death were a cause of physician suffering. 56 In that study, the major causes of physician suffering were ending of the doctor-patient relationship (58%), feelings of uselessness (55%) and failure (38%), increased awareness of the physicians' own mortality (49%), and the presence of “questions without answers” (31%). At the bedside of the dying patient, the most commonly reported feelings noted by the physicians in the study were sadness (94%), helplessness (89%), failure (61%), disappointment (59%), and loneliness (51%). Eric Cassel explains, “suffering is experienced by persons, not merely by bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity. Suffering can include physical pain but is by no means limited to it. The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick.” 57

Barriers and Challenges for the Physician

Several challenges have been identified as especially salient to the practicing oncologist providing care for very sick and dying patients. 58 Care of cancer patients in advanced stages of the disease is time-consuming. Planning discussions of the goals of care in advance, preventing crises by appropriate communication early in the disease progression, preparing the patient and the family to expect symptoms, rather than responding to crises, and involvement of a multidisciplinary team to assess all the possible aspects of the patient's disease may improve care and save time.

1.

“Death talk.” Both social and medical models of care for the sick are usually devoid of discussion about death and dying, unless death has happened or death is imminent. Talking about dying, healthcare proxies, advance directives, and treatment preferences with the cancer patient should be incorporated into routine follow-up clinical visits.

2.

“Failure.” Failure of cancer specific treatment to achieve cure may be falsely viewed by oncologists as personal physician failure. It is critical to acknowledge that in spite of the best treatment approximately 50% of cancer patients will die from disease progression. Early, open discussions about the possibility of poor outcome, staying involved, and directing palliative care after cancer specific therapy is not effective, may alleviate the burden of treatment failure.

Cross-cultural barriers have been recognized increasingly in palliative care and pain management. Honest, but culturally sensitive discussion about end-of-life care targeted to the particular patient and the patient's cultural background is the cornerstone of successful communication with many patients. The clinician's awareness of the patient's sociocultural history and sensitivity to documented health system inequalities in access and quality of services are essential when discussing end-of-life issues. A patient's family, clergy, and other community can be important contributors to end-of-life discussions and in developing achievable goals of care.

Cassem described nine features required of physicians in the care of dying patients 59 :

1.

Clinical competence: Adequate training and experience in the management of pain and other symptoms that are widely prevalent in terminally ill cancer patients is critical. Patients have a reasonable right to expect a high level of clinical competence from the medical oncologist in the care of the dying.

2.

Compassion: Demonstrating compassion acknowledges that what is happening to the patient is of critical importance not only to the patient, but to the physician, and assures the patient that the physician will not abandon the patient in the final hours of life.

3.

Comfort: Adequate relief of physical and psychological symptoms must be provided.

4.

Communication: Talking with dying patients reaffirms their ongoing worth as living human beings and provides an opportunity to identify concerns and problems that can and should be addressed. Communication is more than verbal; a hand on the shoulder, a hand to hold, a wave, a smile, and on occasion, an embrace, communicate care and concern.

5.

Visits from children: Visits from child relatives reinforce the continuity of the personhood of the dying patient and are a potential source of significant consolation and pleasure.

6.

Family cohesion and integration: By facilitating the support of family members for one another, feelings of being a burden are mitigated, and the potential for improved relations (when necessary) can be enhanced.

7.

Cheerfulness: Dying persons have no particular desire for depressed and doleful company. At the other extreme, inappropriate flippancy or frivolity that is insensitive to the mood and situation of the patient can increase a dying person's feeling of isolation. The physician or other visitor should take the cue from the patient.

8.

Consistency and perseverance: Dying patients have a realistic fear of abandonment and isolation. Regular visits or telephone contact provide reassurance of continued support and concern. Cassem points out that patients are quick to identify those who show interest at first but who gradually disappear from the scene.

9.

Equanimity: Clinician nervousness undermines patient security. Clinicians who display composure in the presence of a dying person convey reassurance to both the patient and the family.

By agreement with the publisher, this book is accessible by the search feature, but cannot be browsed.

Copyright © 2003, BC Decker Inc.
Bookshelf ID: NBK13742

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