Hospice Patients Alliance: Consumer Advocacy

Clinging to the Original Hospice Mission - Part Two:

Removal of Regular Medications in the Terminally Ill

Hospice patients (and their families) often question whether or not the patient should continue to receive medications for illnesses which are unrelated to the patient's terminal illness. This scenario is quite common, and hospice staff often care for patients with complex clinical conditions. For example, a patient with lung cancer may also have heart disease or high blood pressure, or both. In many cases, a patient may have three or even four conditions simultaneously and still not be actively dying. Should the patient continue these medications when they enter hospice? To get right to the heart of the matter, the answer is "yes," the patient should be allowed to continue the regular medications even when in a hospice.

Hospices Must Provide Medications for Related Conditions

The uniform federal hospice regulations state that "medical supplies and appliances including drugs and biologicals, must [emphasis added] be provided as needed for the palliation and management of the terminal illness and related conditions.1 This means that the hospice must supply medications to relieve the symptoms related to the terminal illness. However, the hospice does not have to pay for medications which are unrelated to the terminal illness. A hospice will not pay for such medications.

What is important to note is what the regulations do NOT state. The regulations do NOT state that a hospice can prevent a patient from receiving their regular medications. What does this mean to the hospice professional dealing with a patient on the front lines who just happens to have a treatable non-terminal disease? The hospice professional, in consultation with the physician, must assess the patient's clinical situation at the time and intervene in such a way so as to stabilize the patient's non-terminal illnesses while honoring the patient's wishes regarding his care.

Regular medications are often used in this way to manage chronic illnesses and maintain a stable medical condition. The purpose of the original hospice mission is to relieve distressing symptoms in the dying while neither hastening death nor seeking to cure the terminal illness (which is non-cureable by definition). The twisting of the meaning of hospice care comes when one changes "not seeking to cure the terminal illness" to "not seeking to prolong life." Patients do not wish to hasten their death just because they have a terminal illness which may take months or even years to take their lives. For this reason, they will wish to continue their regular medications for chonic medical conditions unrelated to the terminal illness.

Regular Medications May be Stopped At Active Phase of Dying

While a patient newly diagnosed with a terminal illness will continue to receive their regular medications for illnesses which are unrelated to the terminal illness, there may come a time when a patient (and/or his representative) may decide to forego treatment for a chronic non-terminal illness. This may occur when taking the regular medications causes the patient distress or no longer is effective, Or, in some cases, the medication may no longer be necessary. For example, a patient with high blood pressure who becomes dehydrated will not need blood pressure medications. (Patients who truly are dying naturally decrease their intake of food and fluid, thereby reducing their fluid volume in their blood with a consequent blood pressure drop.)

When a patient enters the very, very end active phase of dying2 , most hospice staff will normally only administer medications which directly relieve distressing symptoms such as pain, shortness of breath, respiratory congestion, and so on. A patient who is imminently dying may be unable to swallow, but medications may be given by different routes such as oral drops, gastro-intestinal tubes, patches, ointments, suppositories, injections or intravenously. Stopping the regular medications prematurely will certainly adversely affect the health of the patient. For this reason, the patient's family and/or representatives need complete information about their loved ones condition.

Right to Informed Consent

A health care professional's license requires that they diligently work to meet the health care needs of the patient, including the right to complete and accurate information on all aspects of treatment and accurate information about the patient's actual condition. The regulations also state that the hospice staff must provide full informed consent about hospice services.3 Hospice staff may not use deception to imply that the regulations have requirements that do not exist. If a patient has a chronic illness that is manageable, the nurse or doctor is obligated to explain what treatment options are available, that regular medications may be continued, even though the patient has a terminal illness.

Reimbursement Issues Influencing Hospice Decision-making

What hospice adminstrators are looking at, of course, is the amount of money spent per patient for all services required for that patient during the year and the reimbursement amount they receive. Hospice administrators know that there is a cap or limit on the reimbursement amount.4 In some situations, a patient may be enrolled in a hospice and receive services for a period of time which is long enough to "use up" the services which could be paid for by the reimbursement cap. Some hospices do not wish to continue to provide services after the reimbursement cap is reached, and therefore, they act in ways which will hasten the patient's death or they seek to discharge the patient from the hospice.

Sometimes they send the patient to a hospital or nursing home in an effort to minimize the hospice's expenditures for services which are no longer going to be reimbursed. The hospice then may refuse to re-enroll the patient on various pretexts. These types of situations have been directly reported to the Hospice Patients Alliance. In addition, the United States Office of Inspector General has warned the public about hospice practices which are intended to financially benefit the hospice agency while harming the patient.5

Role of Hospice Staff in Protecting Patient

It is clear that there may be conflicts between an ethical hospice professional and pressures brought from some hospice administrators seeking to minimize hospice expenditures. Hospice staff need to remember that hospices often receive millions of dollars in donations from the public and that the purpose of such donations is specifically to provide additional funding for situations where the patient's need for services exceeds the cap on regular reimbursement from the health insurance provider, whether Medicare, Medicaid or private insurance.

Ethical staff need to protect the patients and act in the best interests of the patient. Where inappropriate removal of regular medications from the patients is being promoted by hospice administrators, and hospice administrators continue along these lines even after thorough discussion, these practices need to be protested, within state and national hospice organizations and also reported to hospice patient advocacy organizations. The future of the hospice industry rests within the hands of the hospice professionals all across our nation.

Premature Denial of Access to Regular Medications is Imposed Death/Euthanasia

As many families and patients recognize, some hospice professionals act as if the patients they serve should die fairly soon. Hospice staff may exert pressure upon the patient and/or family to remove regular medications from the patient, thereby destabilizing the patient and hastening death. All sorts of rationales are given, such as, "it is cruel to force the patient to take such medications when they are dying," or "the patient has a terminal illness; these medications should not be given in that case," thereby, directly mis-informing the patient and family about their situation. There is no rule that regular medications be removed and any attempt to remove them without the patient's approval is a violation of the patient's rights and a violation of the hospice professional's license.

What happens in some situations is the hospice staff may leap illogically to the conclusion that because patients at the very, very end, when death is absolutely imminent, stop their regular medications, therefore hospice patients should stop these medications earlier. The application of such illogical, careless clinical judgment only serves to degrade the standards of care within the hospice industry and directly harms patients.

The last moments, hours, days and even months a patient has to live, however long they may be, are precious to both the patient and the family. Taking that precious time, that life, away unnecessarily and sometimes intentionally, is a violation of the standards of care and the trust placed by the patient in the hospice professionals. A decision to deny regular medications for manageable chronic conditions must be recognized for what it is: a decision to impose death prematurely upon the patient who otherwise would live longer, even though suffering from a terminal illness.

Need for Patient Advocate at the bedside

Hospice patients need advocates at their bedside to protect them. Patients suffering from a terminal illness need to appoint a trustworty person as their health care representative to make decisions for them, if the patient should lapse into a coma. Advanced directives which appoint a trusted family member or friend to serve and protect the patient should be filled out in order to assure that a patient's wishes for treatment are honored. Family members and trusted friends need to evaluate the situation confronting their loved one and decide based upon what is best for the patient and what would honor the patient's wishes.

Patients and/or their authorized representative for health care decisionmaking must realize that they have the right to elect treatment or to decline treatment. If a hospice professional wrongly denies access to regular medications which the patient wishes continued, the patient has the right to appeal that decision to nursing supervisors, the attending physician or the hospice management. As a last resort, the patient has the right to refuse further services from such a hospice and transfer services to another hospice which will honor the patient's right to receive regular medications.6 If the physician is denying access to regular medications, the patient has the right to terminate the services of that physician and choose another physician who will honor the patient's right to these medications. In all circumstances, it is imperative that family members be vigilant about meeting the needs of the patient and honoring his wishes!

1 - Condition of participation--Medical supplies.
     42 CFR ch iv. part 418 Sec. 418.96

2 - See: Signs and Symptoms of Approaching Death

3 - Condition of participation--Informed consent.
     42 CFR ch iv. part 418 Sec. 418.62

4 - Hospice cap amount
     .42 CFR ch iv. part 418 Sec. 418.309
      The hospice cap amount is calculated using the following procedures:
      (a) The cap amount is $6,500 per year and is adjusted
      for inflation or deflation for cap years that end after October 1, 1984,
      by using the percentage change in the medical care expenditure
      category of the Consumer Price Index (CPI) ...."

5 - Medicare Advisory Bulletin on Hospice Benefits
      Federal Register: 11/2/95 vol 60, No. 212 pp. 55721-55722

6 - Change of the designated hospice.
     42 CFR ch iv. part 418 Sec. 418.30

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