- Email: [email protected]
End-of-Life Decision-Making: Myths versus Options
End. . of. .Life Decision . .Making: Myths versus Options Joanne KaUly With 20% of the deaths in America occurring in nursing facilities, the need for adequate and appropriate end-of-life care is more urgent than ever, said Kerry Cranmer, MD, CMD, of Oklahoma City in the workshop session, Crossroad
• Rinsing and good oral care were sufficient to keep most patients comfortable; • 20 patients did not experience hunger; and • 11 were hungry initially, but this feeling subsided.
cate for their patients and work to ensure that their end-of-life wishes are fulfilled. To do this successfully, physicians should address-and counter-the common myths and misperceptions about available interventions when a patient is approaching end of life.
The study suggests, said Dr. Cranmer, that "starving to death may not be the painful process" that myths suggest it is. In fact, there actually are benefits to dehydration in dying patients, he noted, including less pulmonary fluid (congestion), less pharyngeal fluid (suctioning), less tumor pressure (pain if metastatic disease), and less urination (skin breakdown).
or Dead-End: Identifying Terminality, Palliative versus Acute Care. Dr. Cranmer emphasized that physicians should advo-
COMMON MISPERCEPTIONS
Dr. Cranmer began by discussing misperceptions that tube feeding is without problems. Several studies have found that tube feeding may not provide adequate calories or protein or prevent weight loss or severe depletion of fat and lean body mass at the end of life, he said. Despite adequate nutrition, the end-of-life patient doesn't always absorb nutrition adequately. Tube feeding also has been shown to be associated with micronutrient deficiencies, and pressure ulcers are still a difficulty, Dr. Cranmer said, noting that there are several other reasons for these problems as the patient approaches the end of life: • • • • • •
Organism-wide diminution of protein synthesis. Effect of infection on protein synthesis. Effect of chronic illness on absorption. Effect of immobility on body mass. Deficits in tube-feeding formulas. Lack of voluntary increased uptake during severe need.
Dr. Cranmer also identified several risks related to tube feeding, including continued aspiration with belching, vomiting, or high gastric residual volumes, reduced pleasure in eating, and potential need for restraints to prevent patients from attempting to remove tubes. Myths about the untoward effects of withholding nutrition and hydration are also common. Yet, a study of 32 mentally competent cancer patients who asked to have nutrition and hydration withheld because of cramping, diarrhea, nausea and vomiting, and other complications revealed that: • 20 patients experienced no initial thirst; • 12 patients experienced dry mouth, but this was relieved in nine cases by good oral care; H40
End-of-Life
WHEN DOES "END-Of-LIFE" BEGIN? When the Medicare hospice benefit went into effect 20 years ago, patients with a 6-month prognosis were entitled to hospice care. In the years that followed, there was concern on the part of the government and various agencies that hospice benefits were being abused, Dr. Cranmer said. Fears of being cited for abuse led practitioners to limit their use of hospice care; today, the mean stay for hospice care is 16 days. For now, given available criteria, there is no way of knowing with a high degree of certainty when a patient will die, because the disease process alone does not determine which symptoms will eventually lead to death. However, carefully looking at symptoms will help in prognostication and in assessing when endof-life conversations might appropriately begin.
Dysphagia When a patient is no longer able to swallow, a "crossroads" decision must be made. The decision will change the entire course of treatment-and "a tum to the left or right is required!" Dr. Cranmer asserted. He stressed the value of watching for such signs as lowered protein and albumin levels and progressive weight loss to determine whether the patient is declining. At this point, patient and family education is essential and should involve a review of treatment options, including: • Percutaneous endoscopic gastrostomy. • Allowing the patient the choke to eat and drink (comfort and dignity) with full knowledge of the risks of aspiration or even death (nutritional release waiver is mandatory). • The option of having food offered, but not forced.
fever A decision regarding interventions must also be made when the patient has a fever greater than 101°F that does not SYMPOSIUM HIGHLIGHTS 2001
respond to acetaminophen and results in continued weakness, fatigue, or lethargy. In this situation, a conversation with the patient and/or family members should expose the misconceptions that antibiotics will stop repeat infections and that these drugs are without risk. Indeed, said Dr. Cranmer, some antibiotics can cause further problems, such as renal failure, diarrhea, and thrush.
be cleared up immediately-e.g., the idea that no treatment is useful, that comfort care cannot be provided in the patient's home, and that hospitalization will improve both the patient's lung disease and quality of life. As with cardiac disease, the patient and family should be informed about treatment options, including keeping the deteriorating patient comfortable at home.
Skin Breakdown
PAIN
Skin breakdown-persistent rash or irritation, breakdown of skin integrity, pressure ulcers, or venous stasis ulcersshould also prompt decision-making. The physician needs to debunk such misconceptions as "all pressure ulcers are caused by poor care" and "stage III or IV pressure ulcers will heal with the right topical treatment." Treatment discussions should begin with a determination of the skin condition's cause said Dr. Cranmer, noting that aggressive treatment of stage III and IV pressure ulcers is appropriate only if the patient is nutritionally sound. No improvement will occur with any treatment in the presence of severe malnutrition and potential nutritional improvement must be evident before treatment.
Earlier in his talk, Dr. Cranmer emphasized that pain too often is undertreated in nursing facilities, especially in residents older than 85, African American patients, persons receiving multiple medications, and those who are cognitively impaired. He referred to a recent study of pain management in nursing home cancer patients published in the Journal of the American Medical Association (1998;279:1577-1582) that showed 24% to 38% of patients had daily pain. Only 26% of patients experiencing pain received level-3 opioids; 16% received level-I opioids; and 26% received no pain medication at all. Some of the common myths that contribute to undertreatment of pain include:
Cardiac Symptoms Cardiac symptoms can also help define a patient's readiness for hospice care, Dr. Cranmer said. These symptoms include: • Evidence of dyspnea at rest or exertion despite treatment with diuretics, ACE inhibitors, or another appropriate medical regimen. • History of cardiac arrest and resuscitation. • Symptomatic arrhythmia resistant to treatment. • Evidence of echocardiogram with ejection fraction of less than 20%. Discussions with patients and family members should cover the misconceptions that no treatment will help, that comfort care cannot be provided in the home, and that hospitalization will improve heart disease and the patient's quality of life. The point should be made that hospitalization is not necessarily the best or only treatment option, and that another option is to keep the patient comfortable at home if he or she begins to deteriorate.
Lung Disease Lung disease symptoms that should prompt decision-making include: • Evidence of dyspnea at rest and exertion despite bronchodilators and appropriate medical regimen. • Hospitalizations for acute exacerbation (more than three in the last six months). • Decrease in forced expiratory volume (FEV!) greater than 40 mL/year. • Presence of cor pulmonale. • Hypoxemia on supplemental oxygen. • Hypercapnia Again, Dr. Cranmer emphasized that misconceptions must
AMDA PLENARY SESSIONS
• Pain is a normal part of aging. • Pain means that the patient is near death. • Older patients do not have as much pain as younger patients. • Patients taking opioids are at high risk of becoming addicted. Perhaps more than any other symptom, pain requires an understanding of the patient's wishes and expectations, Dr. Cranmer said. A pain evaluation should include a patient interview, intervention history, physical examination, functional assessment, and psychological evaluation.
REFINING RESULTS What constitutes good medical care at the end of life? "We need to redefine what we're doing, redefine our results, and take another look at what quality of life is. We also have to take a new look at what we were taught and how we were trained," said Dr. Cranmer. By identifying symptoms that present opportunities for end-of-life care discussions and working with patients and families to ensure that the patients' wishes are respected, physicians can redefine quality care at the end of life and enable patients to die with comfort and dignity, he concluded.
SELECTED READINGS Clinical Practice Guidelines. Columbia (MD): American Medical Directors Association (http://www.amda.com/info/cpgf). Storey P. Primer of palliative care. Glenview (IL): American Academy of Hospice and Palliative Medicine; 1996. Stuart B, Connor S, Kirubrunner BM, et al. Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases, 2nd ed. Alexandria (VA): National Hospice Organization; 1996
End-of-Life
H41
• Rinsing and good oral care were sufficient to keep most patients comfortable; • 20 patients did not experience hunger; and • 11 were hungry initially, but this feeling subsided.
cate for their patients and work to ensure that their end-of-life wishes are fulfilled. To do this successfully, physicians should address-and counter-the common myths and misperceptions about available interventions when a patient is approaching end of life.
The study suggests, said Dr. Cranmer, that "starving to death may not be the painful process" that myths suggest it is. In fact, there actually are benefits to dehydration in dying patients, he noted, including less pulmonary fluid (congestion), less pharyngeal fluid (suctioning), less tumor pressure (pain if metastatic disease), and less urination (skin breakdown).
or Dead-End: Identifying Terminality, Palliative versus Acute Care. Dr. Cranmer emphasized that physicians should advo-
COMMON MISPERCEPTIONS
Dr. Cranmer began by discussing misperceptions that tube feeding is without problems. Several studies have found that tube feeding may not provide adequate calories or protein or prevent weight loss or severe depletion of fat and lean body mass at the end of life, he said. Despite adequate nutrition, the end-of-life patient doesn't always absorb nutrition adequately. Tube feeding also has been shown to be associated with micronutrient deficiencies, and pressure ulcers are still a difficulty, Dr. Cranmer said, noting that there are several other reasons for these problems as the patient approaches the end of life: • • • • • •
Organism-wide diminution of protein synthesis. Effect of infection on protein synthesis. Effect of chronic illness on absorption. Effect of immobility on body mass. Deficits in tube-feeding formulas. Lack of voluntary increased uptake during severe need.
Dr. Cranmer also identified several risks related to tube feeding, including continued aspiration with belching, vomiting, or high gastric residual volumes, reduced pleasure in eating, and potential need for restraints to prevent patients from attempting to remove tubes. Myths about the untoward effects of withholding nutrition and hydration are also common. Yet, a study of 32 mentally competent cancer patients who asked to have nutrition and hydration withheld because of cramping, diarrhea, nausea and vomiting, and other complications revealed that: • 20 patients experienced no initial thirst; • 12 patients experienced dry mouth, but this was relieved in nine cases by good oral care; H40
End-of-Life
WHEN DOES "END-Of-LIFE" BEGIN? When the Medicare hospice benefit went into effect 20 years ago, patients with a 6-month prognosis were entitled to hospice care. In the years that followed, there was concern on the part of the government and various agencies that hospice benefits were being abused, Dr. Cranmer said. Fears of being cited for abuse led practitioners to limit their use of hospice care; today, the mean stay for hospice care is 16 days. For now, given available criteria, there is no way of knowing with a high degree of certainty when a patient will die, because the disease process alone does not determine which symptoms will eventually lead to death. However, carefully looking at symptoms will help in prognostication and in assessing when endof-life conversations might appropriately begin.
Dysphagia When a patient is no longer able to swallow, a "crossroads" decision must be made. The decision will change the entire course of treatment-and "a tum to the left or right is required!" Dr. Cranmer asserted. He stressed the value of watching for such signs as lowered protein and albumin levels and progressive weight loss to determine whether the patient is declining. At this point, patient and family education is essential and should involve a review of treatment options, including: • Percutaneous endoscopic gastrostomy. • Allowing the patient the choke to eat and drink (comfort and dignity) with full knowledge of the risks of aspiration or even death (nutritional release waiver is mandatory). • The option of having food offered, but not forced.
fever A decision regarding interventions must also be made when the patient has a fever greater than 101°F that does not SYMPOSIUM HIGHLIGHTS 2001
respond to acetaminophen and results in continued weakness, fatigue, or lethargy. In this situation, a conversation with the patient and/or family members should expose the misconceptions that antibiotics will stop repeat infections and that these drugs are without risk. Indeed, said Dr. Cranmer, some antibiotics can cause further problems, such as renal failure, diarrhea, and thrush.
be cleared up immediately-e.g., the idea that no treatment is useful, that comfort care cannot be provided in the patient's home, and that hospitalization will improve both the patient's lung disease and quality of life. As with cardiac disease, the patient and family should be informed about treatment options, including keeping the deteriorating patient comfortable at home.
Skin Breakdown
PAIN
Skin breakdown-persistent rash or irritation, breakdown of skin integrity, pressure ulcers, or venous stasis ulcersshould also prompt decision-making. The physician needs to debunk such misconceptions as "all pressure ulcers are caused by poor care" and "stage III or IV pressure ulcers will heal with the right topical treatment." Treatment discussions should begin with a determination of the skin condition's cause said Dr. Cranmer, noting that aggressive treatment of stage III and IV pressure ulcers is appropriate only if the patient is nutritionally sound. No improvement will occur with any treatment in the presence of severe malnutrition and potential nutritional improvement must be evident before treatment.
Earlier in his talk, Dr. Cranmer emphasized that pain too often is undertreated in nursing facilities, especially in residents older than 85, African American patients, persons receiving multiple medications, and those who are cognitively impaired. He referred to a recent study of pain management in nursing home cancer patients published in the Journal of the American Medical Association (1998;279:1577-1582) that showed 24% to 38% of patients had daily pain. Only 26% of patients experiencing pain received level-3 opioids; 16% received level-I opioids; and 26% received no pain medication at all. Some of the common myths that contribute to undertreatment of pain include:
Cardiac Symptoms Cardiac symptoms can also help define a patient's readiness for hospice care, Dr. Cranmer said. These symptoms include: • Evidence of dyspnea at rest or exertion despite treatment with diuretics, ACE inhibitors, or another appropriate medical regimen. • History of cardiac arrest and resuscitation. • Symptomatic arrhythmia resistant to treatment. • Evidence of echocardiogram with ejection fraction of less than 20%. Discussions with patients and family members should cover the misconceptions that no treatment will help, that comfort care cannot be provided in the home, and that hospitalization will improve heart disease and the patient's quality of life. The point should be made that hospitalization is not necessarily the best or only treatment option, and that another option is to keep the patient comfortable at home if he or she begins to deteriorate.
Lung Disease Lung disease symptoms that should prompt decision-making include: • Evidence of dyspnea at rest and exertion despite bronchodilators and appropriate medical regimen. • Hospitalizations for acute exacerbation (more than three in the last six months). • Decrease in forced expiratory volume (FEV!) greater than 40 mL/year. • Presence of cor pulmonale. • Hypoxemia on supplemental oxygen. • Hypercapnia Again, Dr. Cranmer emphasized that misconceptions must
AMDA PLENARY SESSIONS
• Pain is a normal part of aging. • Pain means that the patient is near death. • Older patients do not have as much pain as younger patients. • Patients taking opioids are at high risk of becoming addicted. Perhaps more than any other symptom, pain requires an understanding of the patient's wishes and expectations, Dr. Cranmer said. A pain evaluation should include a patient interview, intervention history, physical examination, functional assessment, and psychological evaluation.
REFINING RESULTS What constitutes good medical care at the end of life? "We need to redefine what we're doing, redefine our results, and take another look at what quality of life is. We also have to take a new look at what we were taught and how we were trained," said Dr. Cranmer. By identifying symptoms that present opportunities for end-of-life care discussions and working with patients and families to ensure that the patients' wishes are respected, physicians can redefine quality care at the end of life and enable patients to die with comfort and dignity, he concluded.
SELECTED READINGS Clinical Practice Guidelines. Columbia (MD): American Medical Directors Association (http://www.amda.com/info/cpgf). Storey P. Primer of palliative care. Glenview (IL): American Academy of Hospice and Palliative Medicine; 1996. Stuart B, Connor S, Kirubrunner BM, et al. Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases, 2nd ed. Alexandria (VA): National Hospice Organization; 1996
End-of-Life
H41