When a physician hands out a terminal diagnosis, it is often devastating to the patient and family. There are so many things we may have wanted to do, to share, to say, to experience...and now, in a moment all of that has changed. There are regrets, dashed hopes and dreams. In some cases, the patient is elderly and has lived a long and full life; sometimes it is easier to accept in such a case, but not always. Even then, there is often much grief and sadness. Out of fear of death, some families and patients can deny the imminence of death all the way up till the very end.

In the midst of a terribly upsetting confrontation with our own mortality and the death of our loved ones, patients and families must make numerous decisions about:

• what type of health care the patient wants,

• where the patient is to live,

• who will help take care of him or her,

• what efforts will or will not be made to revive him or her,

• is a Will made out?,

• how will we deal with being alone?

• what type of funeral arrangements should be made,

• what will happen after the death of our loved one,

• will we need to move to another home?

• how will the family manage financially, and so on.

For many, it really is quite overwhelming to deal with the impending death of a lifelong family member. Religious faith can help soften the blow, but it is still difficult. When patients and families turn to hospice, they are quite often desperately seeking answers to very urgent questions. The hospice has an ethical and legal obligation to meet the needs of the patients and families: that is the mission of hospice...to work from the heart in a spirit of compassion. Hospices should be providing counseling and information necessary to assist the patient and family make all the decisions necessary to deal with the terminal illness.

Because patients and families most often do not know the laws governing hospice care, unethical hospice administrators could arrange for hospice staff to mislead them about any aspect of hospice, and the patient or family would not know if what they were told was the truth or not. We trust health care staff, nurses, doctors, and counselors...licensed to serve professionally, and we believe they would never lie or deceive us...of course. When patients and families find out that they have been deceived by health care professionals, outrage is an understated description of how they feel.

But more often than not, the hospice staff are misled by administrators who feed them misinformation about the regulations, and then the staff do not realize that any fraud or exploitation is going on...even though their instinct tells them something's just not right. Once hospice staff are misinformed about the standards, it is easy for hospice administrators to have the staff do the "dirty work" for them. If the agency is caught by the police or government inspectors, they blame the staff and deny any official involvement by the agency administrators.

Because it is common for patients and families to be caught up in the emotional upheaval of the moment, hospices can easily manipulate families or patients into facilities against their will, or simply not provide certain services which the family or patient is not aware of, even though needed. Some rogue hospices sorrowfully tell the patient that they can't provide private-duty around-the-clock nursing, even when the law requires the hospice to provide continuous nursing care in a crisis. These rogue hospices then refer the patients to private duty nursing agencies owned by the hospice itself and charge the patient for services already being reimbursed by Medicare, Medicaid, or private insurance...or the hospice may bill at the routine home care level of care to government and have the patient pay for the continuous private duty nursing care (another form of double-billing).

Why patients and families are vulnerable is not difficult to understand. But why hospices would exploit the very patients and families they serve, that is intolerable as well as illegal. Those hospices which provide quality hospice care cannot understand the fraud that occurs in other hospices. Most staff are so dedicated and caring. But certain hospice administrators are white-collar criminals who happen to have entered hospice administration as an opportunity for self-aggrandizement and high pay. Knowing what services should be provided will help you avoid being exploited.

All material copyright of Hospice Patients Alliance ("HPA") unless otherwise credited.