Hospice Patients Alliance: Consumer Advocacy


Whether your loved one receives quality hospice care which meets his or her needs is up to you. You cannot assume that just because you've signed up with a hospice that "everything will be taken care of." Certainly, most patients and families expect that "everything will be taken care of," and the law requires that "everything will be taken care of." The reality today, however, is that many hospices are just like other health care provider/agencies...a business which happens to be in the business of providing health care.

When hospice is approached as a business, without respect for the standards of care, so many patients and families suffer needlessly and tragically. By being informed about the standards of care in hospice and what services should be provided, you can help protect your loved one and yourselves from exploitation. That is a major goal of our mission here at Hospice Patients Alliance.

In all aspects of health care today, you need to be informed as much as possible and assertive, in order to get the very best care you are entitled to. Making sure the hospice staff is "on the ball" and making sure your loved one is comfortable is your job. Hopefully, you won't need to intervene on behalf of your loved one, because the hospice is fulfilling its mission to provide quality hospice care. Remember that the RN case manager is the first contact for problem resolution. You can always contact the hospice's Medical Director or your own Attending Physician if problems are not being resolved in a timely manner.

Waiting weeks for action is simply not acceptable. If your loved one is in pain or suffering somehow, the hospice needs to act promptly; the Attending Physician needs to act, and if not, the hospice's Medical Director must act. Please make sure that they are contacted and that necessary changes in care are made, for your loved one's sake. As with all health care, "the squeaky wheel gets the grease." By speaking up, there's a much better chance your loved one will get the care needed.

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