Patients: Just Say "Ouch!"

What You Can Do About Pain

Taking Your Complaint Beyond the Hospital

Studies confirm that far too many Americans die in pain in our hospitals and nursing homes, and that many patients who are not terminally ill suffer unnecessarily from a painful disease or condition. Physicians have an ethical, moral and legal obligation to manage pain or to refer the patient to another doctor who is competent and willing to do so. Nonetheless, reality often intrudes. This document is a self-help guide for patients and their family, friends and advocates on what to do when if doctors or nurses refuse to acknowledge and treat pain.

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.

What You Can Do About Pain

What to Do If Doctors or Nurses Refuse to Acknowledge and Treat Pain

Beginning at the bedside, you, as a patient's advocate, can take a sequence of steps to enforce the right to pain management.

If the pain is very severe, you will need to move quickly through the list. Even an hour of severe pain seems to last forever. Doctors and hospitals or nursing homes can be very intimidating, but in this situation, doctor does not always know best. A physician can determine how best to solve the problem, but only the patient can say that the problem is solved.

As you move through the following 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.

1. Let the attending physician know that pain management is a priority, according to the Education for Physicians on End-of-Life Care Project (EPEC) Participants Handbook.
   • Tell the doctor that you have heard that pain is very often overlooked and undertreated and ask what his or her plan is for pain management.

   • By requesting pain management, you are not "telling the doctor how to practice medicine." Excuses such as "he'll become an addict" or "morphine will depress his respiration" or "I'll lose my license" are outdated myths. If the response to your request is such an excuse, you may not be able to change the doctor's mind, nor is that your responsibility. You will just have to get busy as an advocate.

2. Talk to the nurse. He or she can be an advocate for the patient. Get the nurse to acknowlege and record the pain. Ask what strategies sometimes work for patients who are hurting. For example, if the patient is yo-yoing from comfort to pain because the pain medication is short-acting, the nurse can suggest to the doctor switching to a longer-acting medication or a patient-controlled pump.

3. Talk with the head nurse of the unit. He or she has an important responsibility for quality care. These nurses are generally well-respected in the hospital. They can "cover" for the patient's nurse and address the doctor frankly.

4. Ask for a palliative care consultation. Doctors have an ethical obligation to consult with a specialist in pain management if they cannot successfully relieve pain (or will not try). Under the American Medical Association's Ethical Standard E-8.04, a doctor who cannot adequately treat pain, or whose patient believes he or she cannot adequately treat pain, is obliged to obtain an outside consultation. The patient may also ask to be referred to a consultant. Under Ethical Standard E-8.041, a doctor may not abandon a patient simply because the patient asks for a second opinion. If your doctor appears insulted by a request for an outside consultation or delays a referral, you have a problem doctor.
   • Many hospitals do not yet have a formal palliative care service, but all hospitals have at least one anesthesiologist. These specialists are trained in pain management, although their education concentrates more on procedures than on pharmacological relief of pain. A consultation may be helpful.

   • 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.

5. 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. Write out a short statement that tells management what the problem is and take a copy directly to the hospital medical director's office. Be sure to keep a copy.
   • In your complaint let the hospital know that you consider undertreatment of pain to be medical malpractice.

   • Also state that you believe the hospital has failed to meet the standards for pain management of the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). Say that unless the complaint is quickly resolved you will fax a copy of the complaint to 1) the state medical board and 2) JCAHOBand then do it. The Federation of State Medical Boards has a list of the state boards and JCAHO complaint forms are available online. 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.

6. 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-advocacy group such as the Bazelon Center's Palliative Care Law Project.

7. The media are excellent attention-getters, but only someone who knows the local media and the community can decide whether publicity would help or hurt. Your goal as an advocate is to use all the leverage available to relieve the pain.

Taking Your Complaint Beyond the Hospital

Unless you get a prompt response to your complaint, taking your complaint to professional organizations may be the lever you need. It's also a public service because you can be almost certain that others have also suffered unnecessarily.

1. If the patient is a participant in an HMO, go beyond the hospital to the HMO's patient omsbudsman. Phone in the complaint to protect your loved one and then follow up in writing. All managed care plans have employees who are paid to listen to concerns and to help and improve care. The hospital should be able and willing to provide a contact number. Although it is easy to be cynical about managed care, your HMO is no less responsible that any other care facility for pain management. Some states, including California and Florida, mandate pain care or referral to experts.

2. If the patient's care is provided or paid for by an HMO, you can also contact the state HMO regulator, usually the state insurance commission. All states have employees who monitor managed care quality and assist patients in making complaints. See a list of state HMO regulatory authorities and contact information. HMOs really do not like to have to deal with regulators.

3. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has established and publicized pain assessment and management requirements that will be part of the organization's review of every accredited hospital and nursing home. Although the pain management standards are not yet incorporated into JCAHO's scoring, they will be used in JCAHO's 2001 surveys. Other JCAHO standards relating to patients' rights also require hospitals and nursing homes to respond to and resolve patient complaints quickly. Complaints are easily made by writing or emailing JCAHO. Click here to learn how. Be sure to make it clear that you have two complaints: the failure to treat pain and the failure to resolve your complaint quickly.

4. If the patient is Medicare-eligible, file a complaint with the Fiscal intermediary (the insurance company that actually audits and pays the bills submitted by your doctor and hospital on behalf of Medicare) and with Medicare's federal administrator, the Center for Medicare and Medicaid Services (CMS--until recently called the Health Care Financing Organization or HFCA). See list of regional offices and information on how to file a Medicare complaint. You can initiate your complaint by telephone to the regional office but should follow up in writing. The Medicare Manual on Fraud and Abuse (which includes malpractice and substandard care paid for by Medicare in some circumstances) makes it clear that "work it out with the provider" is not an acceptable response to a complaint.

5. File a complaint against the doctor with the state medical licensure board.
   • You can obtain the contact information for your state's medical board from the Federation of State Medical Boards.

   • Complaints about nurses who do not respond to requests for pain care or who do not follow doctors' pain management orders can be made to the state board that licenses nurses. State nursing boards with active websites usually post information about making complaints or post a form complaint that can be submitted on line. The National Council of State Boards of Nursing provides contact information and website links for nursing licensure in each state.

   If the need is immediate, make your complaint first by telephone. But be sure to follow up with a written complaint that references your initial telephone report and the name of the state board contact with whom you talked. Complaints do not have to be elaborate, but a clear summary of the facts involved is important. Identify the name of the doctor, name of the facility, patient condition, and efforts already made to resolve the complaint.

   It is very important for medical boards to hear about undertreatment of pain. Boards have been quick to censure doctors for prescribing "too many" opioids. Pain patients, by and large, have been the losers. They need to understand the flip side.

6. Consult an attorney about medical malpractice (civil negligence) and tort claims for intentional infliction of severe emotional distress. These claims are either filed with local courts or, in some states, resolved by mandatory arbitration.

The Palliative Care Law Project believes that care will improve rapidly when hospitals, nursing homes and managed care companies begin to recognize that failing to treat pain is a potential liability. Until recently, these claims have been difficult because of concerns that the "standard of care" for pain and symptom management were poorly defined. That time has passed. Clear standards are now available from many sources, notably JCAHO, the AMA, EPEC and professional specialty boards.

Source:

http://www.painlaw.org/nontreatment.html