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Researchers for a quality of life working group at the mayo clinic maintain that physicians can do more for terminally ill patients to make sure their quality of life doesn’t deteriorate during their final days. Rummans and associates note that, overall, physicians may actually prolong end-of-life suffering by focusing on aggressive approaches for curing the patients’ underlying disease.1
Teresa A. Rummans, MD, Professor of Psychiatry and Psychology at Mayo University and lead author for the study, says that many physicians fail to acknowledge when the time has come to provide the patient with palliative-only care services. "Strategies that more deeply involve family and caregivers can greatly reduce patient suffering by creating a multidimensional approach that maintains the quality of life at life’s end," Rummans says.
The study observes that despite the growth of the hospice movement in the United States during the past 30 years, nearly 85% of Americans die in hospitals and nursing homes, in sharp contrast to the period before the 1900s when most died at home surrounded by their loved ones. This change has resulted in a more prolonged but less personal death, the study says.
Rummans et al define quality of life as the physical, psychological, social, and spiritual domains of health that are influenced by a person’s experiences, beliefs, expectations, and perceptions. "When we looked at the quality of life aspect in 90- to 100-year old patients, most rated it as pretty good," Rummans says. "This is in sharp contrast to what our youth-oriented culture indicates. But as people get older they find meaning in their lives just as they did when they were younger."
Enhancing the Quality of Life
William Brietbart, MD, Chief of Psychiatry Service at Sloan Kettering Memorial Cancer Center in New York City, has researched the psychiatric aspects of symptom control and palliative care for the past 16 years. Breitbart says that one of his goals in teaching and writing has been expanding concepts of palliative care from a concentration on pain and physical symptom control to include psychiatric, psychosocial, existential, and spiritual aspects of care. His series of symptom prevalence studies in AIDS patients found that of the top 10 symptoms with a prevalence rate greater than 60%, most are psychological or psychiatric in nature. "Physical pain, by contrast, often turns out to be number three or four," Breitbart says. "At the top of the list are things like anxiety, distress, irritable or sad mood, insomnia, fatigue, lack of energy, and feeling hopeless."
Breitbart says that delirium is the most common symptom associated with cancer patients in the last stages of the disease. "Up to 85% develop delirium," Breitbart says. "I don’t think the estimates of pain are that high." Whether caused by painkillers, organ failure, or other physical drivers, the delirium is a psychiatric manifestation. Patients can become confused, disturbed, or hallucinate.
Breitbart served on the panel that developed the American Psychiatric Association’s guidelines for the treatment of delirium. He says that delirium is usually reversible and treatable. "You basically ensure the patient’s safety, provide some structured environment, and discover and treat the underlying cause."
Breitbart says that depression is as treatable in cancer patients as it is in the physically healthy population, with response rates in the 60-70% range. "Recent studies show that patients who have insight into their illness—who understand their prognosis and impending death—are four times less likely to experience depression than those who deny their disease. Patients dealing with impending death are much less likely to experience depression."
One of Breitbart’s most recent studies focused on the depression, hopelessness, and desire for hastened death among terminally ill AIDS and cancer patients. He found that only 17% of terminally ill AIDS and cancer patients met the criteria for clinical depression, the same number who reported a high desire for hastened death.
Patients who were clinically depressed were four times more likely to have a high desire for death. "Every patient we studied who wanted hastened death was either clinically depressed or scored high on feelings of hopelessness," Breitbart says, "and the two act independently and synergistically."
Another finding Breitbart considers highly significant is that the less spiritual well being the patient had, the greater the desire for hastened death became. Patients with low levels of spiritual well being were about 10 times more likely to have depression than those with high levels. "You might consider spirituality as a construct made up of faith and meaning," Breitbart says. It’s not the faith element that protects patients from depression. It’s having a sense of meaning."
Adopting Hospice Principles Relieves Suffering
"Physical, psychological, and spiritual comfort: Those are the dimensions of quality of life," Rummans says. "The principles that have improved the quality of life for hospice patients must be adopted in hospitals and other [settings] so that suffering can be relieved where the vast majority of Americans continue to die."
Rummans et al’s research shows that involving the patient’s caregivers from the outset of the health problem is essential to improving quality of life. She observes that there isn’t much that can be done to improve the quality of life for a patient who is admitted and dies within a few hours. "But for someone who comes into critical care and lingers for a number of days, we can take the palliative measures that sometimes get ignored when we’re trying to save the patient."
Rummans et al found that pain control is high among these measures. Another study referenced in their paper followed more than 4000 patients at five academic medical institutions from hospital admission until death. When Rummans et al surveyed family members of the patients, they found that more than half the patients experienced inadequate pain control. Helping patients deal with feelings and spiritual concerns were also prominent: One-quarter of these patients suffered from emotional distress and nearly one-quarter experienced social abandonment and feelings of isolation.
Rummans says that critical care patients are often not given the same opportunity to make choices about their care as are patients with cancer or other long-term illnesses. "Critical care patients often find themselves in the midst of their situations very quickly," Rummans says. "Many times they don’t have time to really reflect on a lot of the issues that go into quality of life."
Rummans et al's research points out that dying patients most fear prolonged dying experiences. However, when appropriate palliative care is provided, the dying patient may well experience a sense of freedom and personal fulfillment from being able to complete life goals.
1. Rummans T, et al. Maintaining quality of life at the end of life. Mayo Clin Proc 2000;75:1305-1310.