Patients’ Right to Palliative Care

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Technical expertise is available to treat 90% of all pain in terminal illness. Guidance is available to medical facilities and doctors on how to treat pain and where to get help if they're stumped. Standards implemented in 2001 by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) require accredited facilities to routinely assess and have systems in place to manage pain. Nonetheless, untreated pain is still common. Studies confirm that far too many Americans die in pain in our hospitals and nursing homes.

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 Code of Ethics of the American Medical Association states that 'physicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care.'

If pain is not being acknowledged or treated, however, the patient, or the patient's advocate — usually a family member or friend — will have to play an active and assertive role in making sure that the ethical obligation translates into comfort for the patient.

This list represents steps which the patient or patient's advocate can take when pain is uncontrolled. Although hospitals and nursing homes can be very intimidating, if the pain is very severe, the advocate should be prepared to walk through them very quickly. Even an hour of severe pain lasts forever.

  1. 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.
  2. Talk to the nurse. He or she can be an advocate for the patient. Get the nurse to acknowledge and record the pain.
  3. Talk to the head nurse of the unit. He or she has an important responsibility for quality care and can address the doctor frankly.
  4. 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 may 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.
  5. Physicians 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 or family complaint. Take a copy of your complaint directly to the hospital medical director's office.
    1. Tell them 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 and to JCAHO, and then do so. If the patient's care is paid for by an HMO, add the state insurance commissioner to your list.

    If it is necessary to move through some or all of these steps, keep a list of the people you talk with and what they say. Advocacy while someone you love is in pain is intensely stressful. Keeping a record will help you stay focused and will enable you to be accurate if you eventually have to file a formal complaint, either with the hospital or with an outside agent.


    Source: Pain and Palliative Care Reporter. The Project on Palliative Care Law of the Bazelon Center for Mental Health Law.

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