"... food has a complex set of meanings within people's culture, families, and lives."
By Paul R. Brenner, M.Div.
Executive Director, Jacob Perlow Hospice
Dept. of Pain Medicine and Palliative Care
Beth Israel Health Care System
The end of life for most persons in American tends to be marked by isolation, alienation, fragmentation, and reductionism in care. Far too many individuals experience unrelieved pain, unaddressed suffering and dishonesty. Far too many families are left with guilt, regret and shame after an unsatisfactory death of a loved one. We need a vision of the end of life that values the time of the end of life as opportunity for human development, and a way to value the dying person as part of the human community.
Tasks to be accomplished at the end of life include achieving an appropriate closure of one's social, family and legal responsibilities, its unresolved problems, of releasing and reconciling relationships, leaving behind a legacy and blessing, achieving a satisfaction level of healing beyond cure, and ultimately, surrendering into the unknown transcendence beyond death.
Within this larger context we need first to understand that food has a complex set of meanings within people's culture, families, and lives. Food has use within religious rituals, healing activities and the provision of comfort, as well as for nutrition. Therefore the role of nutrition and hydration at the end of life is influenced by a wide-range of meanings and values.
The appropriate goal of care at the end of life involves doing everything possible to achieve the most satisfactory level of physical, emotional, spiritual and relational comfort possible. This is done by maximizing pain control, the management of uncomfortable symptoms and the easing of all distress. The focus moves away from attempting to cure the disease, because curative treatments are no longer effective and often add to suffering rather than its relief.
Within this change of the goal of care, the role hydration and nutrition play also is changed to a comfort oriented goal and achievement of a satisfactory quality of end of life experience.
In the final months of life it is part of the progression of irreversible illness that patients experience decreased food and fluid intake, changes in food tolerance and food preference, sensitivity to food odors and tastes, and weight loss. These symptoms occur, not as a result of poor nutrition and hydration, but the progression of disease as the body approaches death.
The appropriate treatment plan is to assess need, tolerance, and preference, maximize the nutritional value of what can be tolerated, and to stress the enjoyment of what can be eaten ("food as comfort") and avoid what will increase discomfort.
In addition, the side effects of analgesics to manage pain often produce side effects of nausea and/or constipation, which also need to be managed effectively. Careful attention to meticulous and careful mouth care is essential to comfort.
Two common beliefs about nutrition and hydration at the end of life, that dehydration causes discomfort and hastens death, are not supported by any scientific studies. In fact, the studies that have been done have found the opposite: patients who did not receive artificial hydration had longer survival rates than those who did, and, that at the end of life, the blood chemistry changes and terminal dehydration produces a kind of natural analgesia in the last days of life.
The automatic application of artificial hydration can also have other negative impacts upon a patient's comfort: it can exacerbate fluid accumulation if the patient is weak or has lost bladder control, it may necessitate the insertion of an indwelling catheter; with patients with bowel obstructions, it may increase vomiting or the need for a nasogastric tube; patients with respiratory problems will have increased problems with secretions; and parenteral fluids can worsen edema, cause a return of ascites, and increase fistula and wound drainage.
In assisting families, who fear that the lack of hydration or nutrition is taking the life, it is important to stress that the patient is dying because of the progression of the disease, not the lack of adequate hydration and nutrition, as well as to stress that no evidence exists to support the idea that artificial hydration increases patient comfort at the end of life.
To help insure human care at the end of life and effective clinical management of all symptoms and distress, all health professionals and family members need to be empowered by clinical evidence and the provision of compassionate and competent care.
Important Resources Include:
Source: Brenner, P. R. (1997). Clinical and ethical issues involving nutrition at the end of life. Ethics Network News, 4(3), 2-3.
https://www.angelfire.com/on/NYCLCethicsnetwork/news/f97p2and3.html
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Posted: 7/14/99
