painlaw.org : Patients' Right to Palliative Care : Advocacy Steps in the Hospital

Actions within the doctor-patient relationship and the facility—an escalating ladder.

This list is a series of self-help steps for a patient or, more realistically, his or her advocate to take when pain is unchecked. If the pain is very severe, the advocate should be prepared to walk through them very quickly. Even a hour of severe pain lasts forever. Doctors and hospitals or nursing homes can be very intimidating for a family but this is a situation in which doctor does not know best. He or she can determine how best to solve the problem, but only the patient can say that the problem is solved.

As you move through this list take notes. Keep a record of the people you talk with and what they said. Advocacy while someone you love is in pain is intensely stressful. Keeping a record will help you stay focused and will make sure that your memory will be accurate if you have to file a formal complaint.

• Let the attending physician know that pain management is a priority. Let the doctor know in a non-adversarial way that you are aware that pain is very often overlooked and undertreated.
• Talk to the nurse. He/she can be an advocate for the patient. Sometimes the problem can be solved by taking a different approach to medication. For example switching from "prn" (as needed) pain doses to a patient-controlled pump or a long-acting patch may avoid peaks and valleys of pain. It sometimes helps when these suggestions come from the nurse.
• Talk with the head nurse of the unit. He or she has an important responsibility for quality care. These nurses are generally well respected. They can cover for the patient's nurse and address the doctor frankly.
• Ask for a palliative care consultation. If the hospital does not have a formal palliative care service, request a consultation with an anesthesiologist. Nursing homes rarely have palliative care doctors or teams. The patient many need to be moved to a hospital to stabilize pain, or a consulting physician may be called into the nursing home. Doctors have an ethical obligation to refer a patient for consultation without abandoning the patient when the consult is completed.
• Doctors have an ethical obligation to manage pain competently. If the patient is still in pain, find out what the hospital's procedure is for filing a patient/family complaint. Take a copy of your complaint directly to the hospital medical director's office. In your complaint let the hospital know that you consider undertreatment of pain to be medical malpractice. Tell them too that you believe the hospital has failed to meet the JCAHO guidelines for pain management. Tell them that unless the complaint is resolved quickly you will fax a copy of the complaint to the state medical board (a list of all state medical boards is located at www.fsmb.org) and to JCAHO, and then do so. You can contact JACHO either by email (complaint@jacaho.org) or by fax to the Office of Quality Monitoring, 630-792-5636. A complaint form is available. If the patient's care is paid for by an HMO, add the state insurance commissioner to your list. Follow-up with formal complaints is covered in the next section.
• If the complaint is not resolved immediately, talk with your lawyer and have him or her follow up the complaint with a telephone call. Or involve a patient's advocacy group, such as the Bazelon Center's Palliative Care Law Project (email: mbaluss@bazelon.org).
• Only someone who knows the local scene can assess the potential impact of contacting the local media. The advocate's goal should be to use all the leverage available to relieve the pain, without being counterproductive.

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