Hospice Patients Alliance: Consumer Advocacy


Some Patients Under-Medicated for Pain

There can be no doubt that the use of narcotic medications for pain is well-accepted in the medical community. Such medications have been used successfully to control pain and keep a patient comfortable. However, it is well-known that certain patients have died in extreme pain, even when some pain medications were given. The question remains: "why?" "Why should any patient suffer extreme pain when medical science has the tools to relieve pain effectively?"

While medical science, in general, has the "tools" to relieve most painful situations, it is certain that some physicians are more expert than others in the application of those tools to the relief of pain. In other words, there is an "art" to medical skill as well as the "science" of medicine. There are many reasons why a physician may not order the administration of adequate pain medications.

Physicians Are Individuals With Their Own Beliefs About Pain

Hospice nurses are advocates for their patients. They call physicians on a regular basis to request changes in medical orders to relieve their patient's pain. It is no secret among hospice nurses that certain physicians routinely refuse to order adequate medications. The comments heard from these physicians vary, but are infuriating and often insensitive in the extreme. Certain physicians personally believe that "pain is part of dying," "there is virtue in suffering," "it is not the physician's role to relive pain," and "if a person has a terminal illness, pain is a necessary component of the dying process."

No hospice will tell you that there are physicians in your own community who routinely, always fail to provide the needed pain medications to keep your loved one comfortable! It is disgraceful that many terminally ill patients die in severe pain needlessly, and, that the hospices fail to intervene in many cases, to assure that the needed pain medications are given. While it is safe to say that most hospice nurses almost always call the physician for orders for the patient's pain, it is also safe to say that many hospice nurses' request for adequate pain medications are ignored by certain physicians who routinely refuse to prescribe what is necessary. In these cases, the hospice Medical Director is legally required to intervene to make sure that the patient's pain is properly relieved.

If you have a physician who under medicates his patients for pain, you most likely have no way of knowing that, unless you've heard from other patients who had pain and were treated by that physician. The hospice nurses may lose their job if they tell you their honest opinion about the physician you have. You need to be extremely sensitive to "hear" what a nurse may be trying to tell you about a physician's orders. (Some physicians may not like to hear this, but it is the fact...nurses are advocates for their patients, and the physicians should also be, but are not always what the patient wants, needs and is entitled to.)

Hospices Are Businesses Which Compete for Patients & for
The Money Generated By "Getting a Patient" Enrolled in the Hospice

Why would a hospice fail to intervene when the physician refuses to prescribe the needed medications for pain??? The obvious answer to this question is the same as what is wrong with most of the health care system: health care agencies often violate standards of care in order to save money or to bolster their financial status. While you may not look upon your loved one as a "source of revenue," hospices and other health care agencies do see patients as a "source of revenue."

No hospice will tell you that it is a business, with a bottom line, and the hospice may not always do what is right for your loved one! Of course there are many hospices that will do what is right for your loved one. The problem is that some hospices do not do the right thing! Payments are made to the agencies for services billed, and bills can only be submitted if there are patients in whose name the bills are made out. Physicians are referral sources for patients; patients are sources of revenue, therefore, hospices must not "offend" the physicians who are referring the patients. Why? Because there are other hospices, and the physician can choose to refer his patients to another hospice or to a home health care agency and to no longer refer to that hospice. Hospices compete with one another for patients, and some of them prefer to "please" the physician rather than advocate for the patient and "step on the toes" of the physician.

While it may seem inconceivable that hospices may ignore the needs of the dying for pain relief, but that is the reality...the well-kept secret scandal. It also may seem inconceivable that one doctor is so important to a hospice, as a referral source for dying patients. It must be remembered that most physicians work within "group practices" which may be quite large, numbering from two or three physicians up to ten or more physicians. If one physician is so offended by a hospice "challenging" his or her medical judgment about the needs of the patient, he or she may choose to no longer send any patients to the hospice, and even more significant, the physicians' group practice can jointly decide to send their patients elsewhere. A large group of physicians can "make" or "break" a hospice's dominance of the "hospice market" in your community! Hospice administrators know this and have instructed their staff to not offend the physicians. Sometimes the hospices choose to accept inadequate orders for pain medications, even though they know the physician routinely under medicates his or her patients!

Some Physicians Are Ignorant About the Proper Use of Pain Medications

It is well-known that medicine now is so specialized that no one individual can be expert in all areas of the practice of medicine. Specialties in hospice or "palliative" medicine are especially useful for the effective management of your loved one's pain. Specialties in "pain management" is also especially useful for the effective management of your loved one's pain. Many of those physicians who have specialized training in "palliative" medicine are often hospice Medical Directors. Physicians with specialization in pain management are often employed in "Pain Management Clinics" within acute-care hospital settings. Your doctor may not have this specialized training! You need to question your physician about his or her philosophy of treating pain. Not having the specialized training available, some physicians "do not know" the effective use of certain medications for pain management. "Not knowing" is not a "sin," but if the physician fails to provide needed medication, because he doesn't know, that is a disgrace. It is a violation of your loved one's rights if the physician fails to provide the needed medications and fails to seek advice if he doesn't know how to properly relieve your loved one's severe pain.

You need to consult with the hospice Medical Director or another physician who knows how to care for the dying in pain, and who is willing to order the needed medications. Do not wait too long before insisting on speaking with the Medical Director of the Hospice. If you don't get satisfaction there, then contact other physicians who may be willing to take the case and order the needed pain medications.

Physicians May Fear Prosecution for Prescribing Narcotics

While it may be incomprehensible to you, some physicians do not order adequate pain medications because they believe, falsely, that they will be prosecuted by the government for prescribing narcotics to the terminally ill. It is necessary for physicians and nurses to adequately document the patient's pain in the medical chart, however, many physicians who order adequate narcotic medications for pain are never questioned by the government or medical authorities. The source of some physicians' fear about prescribing narcotics may exist within the patient's own family. Some physicians fear a lawsuit from a family member which might allege that the physician over-medicated the patient and therefore the patient died, when in actuality, the patient died simply because of the terminal illness.

Many people do not understand the use of narcotic medications for pain, do not understand the symptoms which arise as a part of a terminal illness, and do not understand that the illness itself may be the cause of the patient's death. There are symptoms such as lethargy, non-responsiveness and confusion which are part of the dying process, which may be confused with side-effects of the narcotic medications used for pain. If the patient is actively dying and also receiving pain medications, some family member may blame the physician for the patient's death, wrongly.

Some Physicians Routinely Over-Medicate Their Terminally-Ill Patients

While some physicians do not provide their patients with enough medication to control their pain, other physicians are so aggressive in their treatment of the terminally ill that they knowingly "push" their patients over the edge to death, even though the patient is not ready to die, not willing to die at that time, and simply asking for adequate pain relief. Physicians may "help" a patient to die more quickly than he or she would naturally do, when the patient is willing to die or unwilling to die. Different opinions about voluntary assisted suicide have been raging across the country.

Dr. Kevorkian of Michigan is one example of a physician who believes in the practice of "euthanasia" or "assisted suicide." Dr. Kevorkian's point seems to be that people should have the right to die, by unnatural means, whenever they wish to do so. He has obviously assisted many persons in dying, by providing the mechanisms and medications for them to die. Whatever your point of view about assisted suicide and euthanasia, hospice, meaning the hospice philosophy and the hospice's proper role, is not in the business of performing "assisted suicide" at all. Hospice is about helping the patient and family to be comfortable, relieving symptoms, and respecting the patient's and family's wishes.

However, over-medicating a patient, against his or her will, does happen. Over-medicating a patient, with the patient's consent, also does happen! You, as the family/caregiver, need to be alert and watchful to see that your loved one's wishes are honored, and that pain is controlled. There is a very fine line which needs to be reached where the patient is comfortable, yet adverse side-effects are avoided. Some physicians do act as if they believe they have the right to make decisions for the patient about the patient's care. Doctors are not licensed to make the patient's own decisions for them! Doctors are not God! Hospice nurses must advocate for the patient's own wishes, and the physician is required by the standards of care to act in accordance with the patient' own wishes.

No hospice will tell you about the doctors who have over-medicated patients' pain, in the mistaken belief that a patient in pain is better off dead, than suffering yet alive. The sad fact is that some physicians have pushed their patients over the edge, but these physicians are in the minority. Most physicians are quite sensitive to the needs of the patient and work as hard as they can to help the patient remain comfortable. We must condemn the actions of those physicians who violate their patient's wishes, but we must also clearly state that there are many physicians who are greatly dedicated servants of the public.

Some Physicians Fear the Adverse Side-Effects of Narcotic Medications

Narcotic medications, like all medications, may have serious side-effects, in some patients, in some circumstances. Serious side-effects from narcotics are easily avoided by skilled and knowledgeable physicians. Yet, even common over-the-counter medications can have serious side-effects. With narcotic medications, the common side-effects are more serious than over-the-counter medications. This is the reason that narcotics are considered "controlled substances" which have special legal controls about their distribution and availability to the community. Because of the possible serious side-effects from narcotic medications, it is important that you make sure to get an Attending Physician who is knowledgeable about the use of narcotics, hospice and helping the terminally ill.

"Respiratory depression" is a major side effect of narcotics. In respiratory depression, the patient's breathing becomes slower, with a weaker breathing effort, and if the "respiratory depression" is extreme, the patient's breathing could actually stop. The cessation of breathing may be for very short periods of time, after which the patient again begins to breathe, called "apnea." On the other hand, breathing could stop permanently, resulting in the patient's death. How does a physician know how much medication to order? There are standard protocols or accepted standards of practice which guide a physician in the prescribing of narcotic medications. There are standard methods for increasing or adjusting the dosage of medications, and for changing from one narcotic medication to another.

When a physician follows the standard protocol for adjusting the pain medication, respiratory depression is rarely experienced. Your hospice nurse and your attending physician can explain the protocol for adjusting the medication if you have questions about respiratory depression. In addition, if the patient's breathing becomes too slow, the dosage is usually reduced or even held completely, until the patient gets used to the medication.

Lethargy or profound sleepiness may be a common side-effect of narcotics. If the patient is still taking liquids, it may be helpful for the patient to have "caffeine-containing" drinks such as coffee, black tea or certain other beverages. These drinks are stimulants which can help the patient become more alert. Of course, you must consult your hospice nurse and physician about what should be done in your particular case, if the patient is too lethargic. It may be that other medications are making the patient sleepy, but it could be that the patient is actually "pre-actively dying" or "actively dying." If your loved one is "pre-actively dying" or "actively dying," the lethargy is likely simply a natural part of the dying process. Many patients begin to sleep more as they come closer to actually dying.

Constipation is a common side-effect of narcotic medications. When constipation occurs in the terminally ill patient, it can cause abdominal pain which is unrelated to the pain resulting from the disease. Some cases of constipation can progress into a full-blown blockage of the intestinal tract, or "impaction." Impaction of the large intestine is a medical emergency and can result in death. It must be carefully managed and treated to remove the blockage, if the patient is not already at the point of death. If the patient is not actively dying, your attending physician will order medications or treatments to relieve the constipation or impaction. Your hospice nurse will administer enemas to relieve the impaction; mineral oil based enemas can soften the material blocking the intestine and with subsequent enemas, the blockage can be removed. Hospice nurses are expert in managing the side-effects which occur in the terminally ill, and especially in conjunction with the use of narcotic medications.

Nausea and Vomiting may be a common side-effect of narcotic medications. When a patient suffers from a terminal illness, he or she may have nausea and vomiting as a result of the disease. On the other hand, medications themselves may cause nausea and vomiting. If the patient has severe pain, the physician may have no choice but to order narcotic medications for pain relief. If the patient then experiences nausea and vomiting, the physician will normally order a medication to control or suppress the nausea and vomiting...an "anti-emetic" medication. These medications can be quite effective, but must be given regularly as needed to keep the nausea and vomiting from returning.

You will need to always be aware of what medications your loved one is taking, and whether or not your loved one's symptoms are a sign he or she is close to dying, or a side-effect of a medication. Review of the medications being given should consider what common side-effects those medications have and whether or not the medications are causing those symptoms. Sometimes a change of medication can relieve the patient's symptoms. For example, one narcotic may be less likely to cause nausea and vomiting, or one anti-emetic may be more effective than another. Certain laxatives may be more effective than others. Changes in medication are common in care for the terminally ill and should be expected. They are part of providing appropriate and sensitive care for the dying.

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