What Is End-of-Life Care?
/By Dr. Forest Tennant and Kristen Ogden
The Medical Board of California’s new Guidelines for Prescribing Controlled Substances for Pain are futuristic and practical. They recognize that persons who need intractable pain or “end-of-life” care may often require a non-standard medical program, so the board made these two conditions exempt from any limitations on dosage or treatment.
In our recent column on the guidelines, we clarified the meaning of intractable pain and suggested criteria for identification of the intractable pain patient who requires non-standard drugs and dosages. This column does the same for “end-of-life” care.
The California guidelines define end-of-life care as “for persons with a terminal illness or at risk of dying in the near future whether in hospice care, hospitals, long-term care or at home.” Note that this definition does not include palliative care, whose definition is frankly now in limbo, because medical textbooks define it as “symptomatic rather than curative care.” Third party payers only recognize palliative care as being in the last few months of life.
How does one identify a person who needs “end-of-life” care? California actually has a law which helps identify the person who needs end-of-life care. Such a person “is suffering from an incurable and irreversible illness that will bring about death within one year if the illness takes its normal course and the treatment is for pain control and/or symptom management rather than to cure the illness.”
In effect, this definition includes intractable pain patients who are not expected to live more than a year without treatment. Severe intractable pain, regardless of cause, if left untreated will result in malnutrition, immune deficiency, cardiac or adrenal failure, and a shorter life.
To our knowledge there are no formal criteria published for clinicians to determine when there exists high risk of death within a year. Here are criteria used and suggested by us:
Patient has a known disease that may shorten life, such as cancer, adhesive arachnoiditis, head trauma, and Ehlers-Danlos syndromes.
Pain is constant and interferes with activities of daily living as reported by a close family member. Examples are inability to eat, toileting, mobility, hygiene, and dressing.
Bed bound and immobile for many hours of each day.
Malnutrition, evidence of tissue loss, poor skin turgor (rigidity), and/or weight loss.
Family reports inability to normally read, answer questions, or socially respond.
Some alterations in normal physiologic functions such as blood pressure, pulse, and hormone levels.
We encourage clinicians to use our criteria for “end-of-life” care or develop some specific alternative criteria. Too many seriously ill intractable pain patients have been denied care until it was too late. An “end-of-life” case may begin at any age, be it 14, 40 or 80 years old.
Many, if not most “end-of-life” patients meet terminus within a year. But some persons turn things around with adequate intractable pain care and live much longer.
Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain. The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.
Kristen Ogden is a patient advocate from Virginia. Kristen and her husband Louis travel regularly to California for his intractable pain treatment and prescriptions, which are not available in their home state.
