Hospice Patients Alliance: Consumer Advocacy

Clinging to the Original Hospice Mission - Part One:

Infections in the Terminally Ill

Hospice patients (and their families) often question whether or not he or she may receive treatment for infections unrelated to the patient's terminal illness. To get right to the heart of the matter, the answer is "yes," the patient can be treated for infections even when in a hospice. To understand the issue more clearly, let's get into the regulations and ethical considerations governing the situation.

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. A hospice may request a small co-pay for each prescription, but otherwise, the hospice pays for these medications out of its per-diem reimbursement for each patient enrolled in the hospice.

What is important to note is what the regulations do NOT state. The regulations do NOT state that a hospice can deny a patient access to treatment for infection. But the regulations also do not mandate that a hospice pay for medication unrelated to the terminal illness. What does this mean to the hospice professional dealing with a patient on the front lines who just happens to have a treatable infection? What happens when the patient gets a very treatable bacterial infection of the urinary tract or respiratory system?

In many situations, an infection is directly related to the terminal illness. Just as a patient may get constipation or nausea due to a certain terminal illness, a patient may get a respiratory infection as a result or consequence of conditions created by the terminal illness. A lung cancer patient, for example, may get a respiratory infection or even pneumonia in addition to the cancer. If the patient is not dying of the cancer in the near future, imminently, why not treat the infection? If, for example, a patient who is immobilized due to a painful and terminal condition needs a urinary catheter and subsequently develops a urinary tract infection, is the infection related to the terminal condition? Yes, of course! Why not treat the patient for that infection? Hospices are required to provide medications "as needed for the palliation and management of the terminal illness and related conditions.

Right to Informed Consent

A health care professional's license requires that they diligently work to meet the health care needs of the patient. The regulations also state that the hospice staff must provide full informed consent about hospice services.2 Hospice staff may not use deception to imply that the regulations have requirements that do not exist. If a patient has an infection that is treatable, should the nurse or doctor explain what treatment options are available, even if the patient has a terminal illness? Certainly! Of course, if the patient is truly at the very, very end-stage active phase of dying where treatment for an infection would not be effective, a patient (or health care representative) may decline treatment.

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.3

Whether the cap on reimbursement is reached or not, hospice administrators wish to minimize expenditures while maximizing revenue; good business practices would require that they do so, however, when expenditures are minimized so much that they endanger or harm the patient, then the hospice has crossed the line into "rogue" hospice practices.

When Infection is Un-related to Terminal Illness

When the infection is unrelated to the terminal illness, and the hospice refuses to provide medication for the infection, but continues to provide ordinary hospice services, there is absolutely no reason that the patient cannot receive treatment for the infection. However, in that situation, the patient and/or family must pay for the medications themselves. There is nothing in the regulations that prevents the patient from getting that treatment and no hospice professional should stand in the way of the patient's right to choose treatment.

Denial of Treatment for Treatable Infection is Imposed Death/Euthanasia

When a patient has a terminal illness, they do not automatically decide to die as soon as possible. That would be an absurd belief. However, some hospice professionals act as if the patients they serve should die fairly soon. While the standard "line" about hospice is that hospices neither seek to prolong life nor hasten death, the actual basis for the saying is that a hospice is no longer seeking to cure a non-cureable disease. The hospice provides care which alleviates suffering which may occur as a consequence of that disease. No longer seeking to cure a terminal illness is not a basis upon which one may ethically deny treatment for a treatable infection.

Sloppy thinking and sloppy ethics only serve to degrade the standards of care within the hospice industry and directly harm patients. While it is natural to forego treatment of an infection in the last moments of the dying process, foregoing such treatment while the patient is still living and treatable is a much different matter.

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 treatment for a treatable infection 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.

No hospice or other agency has the right to deny treatment for a treatable infection, however there are some hospices which routinely deny such care without informing the patient or family that treatment might be provided or that in many situations, the hospice is required to provide such treatment! Although one may not wish to think about it, some hospices may make decisions based upon financial concerns rather than the welfare of the patient. 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 treatment for at treatable infection, 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 treatment for a treatable infection.4 If the physician is denying treatment for a treatable infection, the patient has the right to terminate the services of that physician and choose another physician who will honor the patient's right to treatment. 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 - Condition of participation--Informed consent.
     42 CFR ch iv. part 418 Sec. 418.62

3 - Hospice cap amount.
     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) ...."
      42 CFR ch iv. part 418 Sec. 418.309

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

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