Hospice Patients Alliance: Consumer Advocacy


Pain control is one of the central goals of hospice care. Most patients and families who use hospice services expect that the hospice will make every effort to relieve the pain which afflicts their loved one. From the legal standpoint, the federal guidelines regulating hospice require the hospice to make every reasonable effort to assure that the patient's pain is controlled. Most state laws governing hospice also make pain control a primary and required component of hospice care.

Using hospice services will, in most cases, assure that the patient receives the pain medications needed to control his pain: the hospice Interdisciplinary Team and the hospice RN case manager are focussed on making sure the patient is comfortable. The Attending Physician who orders all medications should be focussed on the same goal, and in many cases does see to it that the patient is kept comfortable. Unfortunately, for varying reasons, some physicians may not order the needed medications to adequately control the patient's pain!

In these cases, the hospice staff must intervene to protect the patient and make sure the patient gets what is needed to control pain. The hospice Medical Director, being a physician, has the authority to give medical orders and can intervene to provide the patient with the needed medications. In fact, the hospice Medical Director is required by law to make sure the patient's medical needs are met; these needs include medication for pain. 1


In most cases, physicians will begin to treat pain with what are called "over the counter" pain medications such as acetaminophen (Tylenol), ibuprofen (Motrin), aspirin or others. As a terminal disease with pain involvement continues to takes its toll, pain levels will likely increase to the point where these over the counter ("OTC") medications no longer help at all. Then, the physician will prescribe other stronger medications. Narcotic medications in combination with other medications or narcotic medications alone are commonly used to relieve pain in the terminally ill.

It is important for the patient to receive the appropriate medication for his or her condition. Different types of pain respond to different medications. If there is bone pain, one type of medication is useful, while if there's abdominal pain from spasms, other medications may be useful. Nerve pain may respond to other medications, or even surgeries for pain management. Giving more narcotic medications is helpful with certain types of pain, while in other cases, it does not "touch" the pain.

It is amazing, in the case of a patient with abdominal spasms, to see a patient's excruciating pain respond to a simple medication made to treat that problem, when a very strong dose of morphine may not provide any relief. Increasing the dose of a medication which is not appropriate does not help, and only increases the adverse side-effects which good medical management tries to avoid.

Hospice nurses work with many physicians and know which of them are adept at treating the many symptoms which arise in a terminal illness. Just as there are better surgeons available for specific operations, there are better nurses and better attending physicians available. Knowing which doctor is of the "better" quality can make all the difference between an unnecessarily terribly painful death and a peaceful and comfortable death. Some of us "choose" a physician by chance, by taking the physician assigned to us in a hospital or a referral, without looking into the physician's "record." Word of mouth references from a trusted friend or relative, about a physician who successfully treated pain in others is one of the best recommendations you can look for.

No Basis for Fear of Addiction

In the terminally ill patient's case, there is no basis for any fear about "becoming addicted" to a narcotic given for pain. Although many individuals have strong beliefs about avoiding "drugs," meaning illegal drugs such as cocaine, heroin and others, the legal use of narcotic medications for pain is totally appropriate and a welcome relief from the severe pain which plagues certain patients. Addiction is a problem for those who are not dying.

The terminally ill patient who suffers from terrible pain needs these medications to relieve that pain. Using narcotic medications for the terminally ill patient is truly compassionate and humane. It is for this purpose that such narcotic medications exist! Nobody should feel ashamed about taking such medications to ease the pain of a terminal illness, and nobody has the right to deny a patient these medications when they need them. The severity of pain some patients experience is quite mild, while others experience the most excruciating levels of pain. Modern medical science can effectively treat most pain and keep the patient comfortable. If a patient is still painful, the physician needs to be consulted immediately for adjustments or changes of medication, or for other treatments for pain.

Other Treatments for Pain

There are other things which can be done to reduce the level of pain in your loved one. Anything which causes added tension or stress should be avoided. Those interventions which help the patient to relax are definitely quite helpful. Providing an atmosphere which is in harmony with his or her wishes is important. This means that those patients who have a natural appreciation for music may be helped with calming, soothing music. There is an entire field of health care now dedicated to "music therapy" and research confirms that music, used properly, can have wonderful benefits for many patients.

For those patients who prefer silence, a quiet atmosphere should be maintained. It is distressing to note that some families argue loudly in front of the patient, apparently not caring enough to avoid disturbing him or her, even when the patient is actively dying. Such arguments certainly disturb the patient and can only add to their tension and pain.

Some patients may find massage of some sort helpful, others may simply wish to be held. The simple presence of someone who loves the patient can be extremely soothing and helpful. You can be creative to find what helps and supports your loved one's comfort. For some, a warm bath can help, while in others, the attempt to get into a bath would be too painful to even attempt. If there is any abdominal pain, it is important to make sure there is no constipation or blockage...which can be extremely painful.

There are also other medical interventions which may be helpful when your loved one experiences severe pain. If narcotic medications, given in sufficient dosages (and that is crucial here) do not relieve the pain, the route of administering the medication may be changed from oral to subcutaneous or to intravenous...or you may need to consider giving the medication epidurally. There are some physicians who even cut through certain nerves to relieve pain. The subject of pain relief is extremely vast, and if the patient is not getting relief, you need to get a "second opinion" from a physician who is an expert in treating pain in the terminally ill. If you are willing to work with your physician, and the physician is willing to work with you , then there is no need for so many patients to suffer needlessly.

Physical Signs Your Loved One May Be In Pain

Although many patients freely express their pain, it is quite common for some patients to attempt to hide their level of pain, in order to protect the family from feeling bad about the patient's suffering, or to help the patient appear "strong." Some patients believe that suffering is a normal part of life and to avoid pain is "cowardly" or "weak," while others see pain as a "purifying" force which helps them along in their religious path.

While each patient has the right to accept or refuse treatment for pain (or any medical condition), hospice philosophy embraces the idea of relieving pain and bringing comfort to the patient who desires it. Hospice nurses or doctors are not there to "force" pain medications on patients who don't want it, although it sometimes happens. The family is in a difficult situation when the patient will not or cannot communicate in words what level of pain is occurring.

It is not possible for a patient to totally "hide" his or her pain level. When pain is severe, many physical changes occur which alert the observant hospice nurse or family member about the pain levels. Not all changes occur in all patients, but some will occur in all patients. Systolic blood pressure may increase from the usual level for that patient, heart rate may increase, the rate of breathing may increase, the patient may hold his arms or legs tightly or the rest of the patient's body may be "tight." When the patient is moved or turned in bed, the patient may instinctively "guard" his position to protect certain parts of the body from pressure which would cause increased pain, above what it already is. Even if the patient cannot speak, some moaning may occur. If the patient raises his voice or calls out, it is quite likely that pain is severe.

Each one of these factors taken together can give the experienced hospice nurse a very accurate "picture" of the patient's level of pain. When medications have been ineffective to relieve the patient's pain, the nurse must contact the physician for medication orders to increase the dosage or change the medication (according to the physician's judgment). It is important for the family to attempt to get clear and unambiguous communication from the patient about his or her pain level. If this is not possible, then the physical signs of pain need to be closely evaluated.

Physicians Who Refuse to Order Adequate Pain Medication

It is likely that in any major city or metropolitan area, there are some physicians who simply do not follow the standard protocol for treating pain. It is unlikely that they are totally unaware of the standards for treating pain, especially if they've been in medical practice for several years or more. The United States Department of Health and Human Services, Public Health Department has convened conferences of experts on pain management in cancer and other diseases. Standard procedures for pain management have been clearly delineated for any physician to follow, and these standards are safe and effective for pain management.

You might be surprised to learn that there are physicians who refuse to take calls about their patients' pain levels or who ignore nurse's and family pleas for pain medication. Any physician who refuses to receive phone calls about a terminally ill patient's pain level or who consistently does not intervene as necessary to relieve the patient's pain should be immediately removed from the case! Why should a patient keep a physician who does not provide the service for which the physician was hired??? In the meantime, you can definitely request to speak directly with the hospice medical Director who is legally authorized (and obligated actually) to step in and order the needed medications for the patient's pain relief.

Be sure, the Medical Director can step in and order what's needed, even if it might "offend" the Attending Physician to have someone challenge his or her medical orders or judgment. If the Medical Director hesitates to step in and take over when the Attending Physician refuses to provide adequate care, explain that you know that the Medical Director has legal authority to do so and is actually obligated by federal law to do so. If the Medical Director still refuses to step in, and the patient continues in pain, either change Attending physicians or get a different hospice completely! You can choose hospices, and one hospice may be much more helpful than another in this situation. You can even have the hospice's own Medical Director act as the Attending physician if you can't find another physician to take over.

If the patient is unable to communicate this wish on his or her own, then the family must step in and get another physician. In this case, hopefully, the patient has filled out a "Durable Medical Power of Attorney" so that another person can legally make these decisions for the patient. The hospice is required to allow you to change physicians, and nobody has the right to tell you that you can't change physicians, at any time.

The hospice must maintain continuity of care, even if you change Attending Physicians! The terminally ill need physicians who are dedicated to the hospice philosophy of compassionate care and are willing and able to order the needed medications for pain, so that your loved one is kept as comfortable as possible. Many patients needlessly suffer excruciating pain, simply because the physician has decided not to order what is needed by the patient!


42 CFR Section 418.54 of the Federal regulations state: "The medical director...assumes overall responsibility for the medical component of the hospice's patient care program." 42 CFR Section 418.50 states "A hospice must...make...drugs...routinely available on a 24 hour basis; [and] "make...covered services available...to the extent necessary to meet the needs of individuals for care that is reasonable and necessary for the palliation and management of terminal illness and related conditions." "Palliation" is the relief of symptoms, and pain management is one of the main symptoms which hospice must focus on relieving.

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