painlaw.org : Patients' Right to Palliative Care : Patients: Just Say Ouch

Medical experts estimate that doctors can relieve 90 percent of all pain in terminal illnesses. Hospitals and doctors have access to ample sources of education, standards and other guidance on how to treat pain and where to get help if they're stumped. It is unforgivable for patients still to have undertreated and untreated pain.

But they do. Here are some cases that have come to the Palliative Care Project:

1. A woman spent 18 agonizing hours before her death with only over-the-counter Tylenol7 for her pain, despite her family's pleas for a better medication. Her advance directive specified comfort care and the doctor had specifically assured the patient and her family that he would manage her care for comfort.

2. A 74-year-old man was discharged from the ICU to die of congestive heart failure only 48 hours after his left leg was amputated. His doctor prescribed no pain medication and family pleas were ignored. The hospital backed the doctor. Only the family's decision to replace the attending physician summarily with a more compassionate doctor allowed him to die in peace. That doctor was later penalized by the hospital.

3. An elderly man was admitted to the hospital on a Friday night because of intolerable post-operative pain. He received no pain medication until Monday morning, although his family and nurses pled for better care. The man died four days later of a massive stroke that the family believes was induced by stress, agitation and pain during that long interval.

4. A doctor confronted with the obvious suffering of a woman dying of cancer refused to administer pain medication. When asked why, he responded: "I have my reasons," and walked away. No pain medication was ever prescribed.

These are not unique experiences. Study after study has confirmed that far too many Americans die in pain in our hospitals and nursing homes. The same is true for patients who are not terminally ill, but who have a painful disease or condition.

This year for the first time the organization that accredits American hospitals and nursing homes is implementing requirements for assessing and treating pain. This is a big step. Every accredited hospital and nursing home should be working on meeting these standards even though they won't be "graded" on them until 2002. Hospitals will have to treat pain like a "fifth vital sign"--as important as temperature, blood pressure, pulse and respiration. When they find pain, they must treat it as effectively as possible.

Physicians have an ethical, moral, and legal obligation to manage pain or to assure that the patient is referred to another doctor who is competent and willing to do so. The American Medical Association's Ethical Standard E-2.20 states that "[p]hysicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care."

Nonetheless, reality intrudes. The patient or advocate will have to play an active and assertive role to protect the patient's right to good palliative care. It is rarely easy. Doctors are authority figures, upon whom patients are dependent for their very survival. They can be intimidating, patronizing and dismissive. If "please" fails, be prepared to press on.

<<< Previous Next >>> [ Go Up ]