Changes in quality of life for patients who require transplantation or permanent artificial organ support begin with the onset of serious organ dysfunction. These changes, which initially are almost universally negative, greatly affect close family members as well as the patient. To the extent that alternate therapies are available, transplantation appears preferable to chronic artificial organ support in allowing the patient to return to work, to school, or to similar self-selected activities. There is some evidence that transplant and artificial organ patients may describe their subjective well-being more positively than would be anticipated from objective data. There is also evidence, at least for hemodialysis patients, that this satisfaction is time-limited. The right to choose death over life dependent on a machine is being exercised by some alert patients as well as by family members and attending physicians when the patient is not competent. Little data is available regarding the long-range impact of transplantation or artificial organ support on members of the patients' families, but in the author's experience one characteristic predominates. To the extent that the life-extending therapy can be forgotten, or is non-intrusive, for days or weeks at a time, as can be the case with transplantation, family functioning returns to normal. The adjustments needed to cope successfully with the stresses of the acute phase are completed. To the extent that reminders and uncertainties of the therapy are chronically present, family interaction continues to center upon (or is designed to avoid) the patient. The family's resilience and capacity to maintain its integrity diminish with each new stressful event.
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http://dx.doi.org/10.1017/s0266462300002634 | DOI Listing |
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