Hospice Patients Alliance: Consumer Advocacy

Problems and Complaints About Hospice:
What To Do

While we all hope that you won't encounter any problems in hospice care, the reality is that problems can and do occur. Any problems you encounter which arise out of the hospice care being provided should be mentioned promptly to the RN case manager assigned to your loved one's case. Clear communication about what the problem is can go far to resolve many problems. Most hospice staff are extremely dedicated and caring and will do whatever they can to help you.

Problems with symptom management and pain control should be immediately called in to the RN case manager. If it is after regular office hours, then you should call the hospice's on-call nurse for advice. Sometimes a little information on how the physician allows you to adjust the medications being given will help you know how to deal with a situation that arises. Sometimes certain medications may need to stopped, while others may need to be given without fail on a regular basis every few hours.

The hospice is required to make an RN available to come out at any time to assist you and your loved one if needed for symptom management or pain control. Hospices have nurses "on-call" whose job is to visit patients after hours and over night if necessary. They are experienced in dealing with the types of crises that can occur in terminal illnesses. Do not be hesitant to call. The hospice will give you a telephone number which you can call at any time after regular office hours for assistance.

If you find that your loved one is still in pain or experiencing distressing symptoms, even after clearly communicating with your RN case manager or attending physician, then you need to speak with the hospice's Medical Director yourself. The Medical Director is authorized to intervene on behalf of your loved one and give medical orders for medications or treatments if necessary. You also have the right to change physicians if necessary to get the care that is necessary to maintain your loved one's comfort and relief from distressing symptoms. If the hospice Medical Director does not intervene, you can speak with the hospice's manager directly. In any case, should all these attempts fail, federal law guarantees you the right to change to another hospice of your choice. 1

It is important that you write down any complaints you have about a hospice. Writing it down will help clarify the issues. Always remember to include the dates, names of persons involved, the hospice ID/case # for your loved one, and any relevant information. Clearly list the problems which occurred. Complaint about a hospice can be sent to the hospice's management for feedback. In addition, if the problems appear to be due to poor management, negligence or even intentional management policy, you should make a written complaint to your State's Bureau of Health Systems or Department of Health Services (names vary from State to State).

See the "State by State Address Directory of Licensing Offices" for making a complaint to your State's administrative offices. It is extremely important that you mail your complaint by U.S. Certified and Return Receipt mail: ?in writing, dated, signed and with a return address and phone number so they can contact you for more information if necessary. You can include the hospice's own patient ID # for your loved one to help the State locate the correct medical record. It is wise to send complaints by certified/return receipt U.S. mail so that you have a record that the State received your complaint and you can prove it if necessary. You may use the complaint form at this website if you wish: Click here to see the complaint form. You can print this form out and use it to send to the appropriate government agency in your state.

If within one month you don't receive any confirmation from the State itself that they received your complaint, directly telephone the Department which inspects and surveys hospices to see if they received your complaint. Your persistence can help improve hospice care for other patients and families. You may be reluctant to go to the trouble of making a complaint, but not making a complaint is the reason so many problems continue to exist! By officially making a complaint, you will be helping to stop these problems in the future. We urge you to voice your concerns in writing and let other people know. Health care will only improve if you and others speak up. You can make an important differerence.

If you believe that services were not provided to you which should have been provided, this can also be included in a complaint to the State. Because hospices are reimbursed on a per-diem basis, meaning they get paid for every day your loved one is in the program, they are obligated by law to provide all services you need for the care and treatment related to the terminal illness. If you needed or have requested certain services which you know were appropriate and the hospice still failed to provide that service, health care fraud may be occurring and should be reported to the regional U.S. Office of the Inspector General and U.S. Attorney's office for your area. (See the section on Links to Report Fraud).



The Code of Federal Regulations at 42 CFR 418.30 states "An individual or representative may change, once in each election period, the designation of the particular hospice from which hospice care will be received." [emphasis added]

If you have questions about hospice, we hope that you will take the time to visit the hundreds of pages at our website, read our Guide to Hospice Careand visit our resources and links section (with hundreds of vital resources listed).

Hospice Patients Alliance affirms that all human life is inherently valuable and that the role of hospice nurses, physicians and all other staff is to alleviate suffering and provide comfort for the sick and dying without sanctioning or assisting their suicide. A death with dignity allows for a natural death in its own time, while doing everything possible to assure relief from distressing symptoms. Hospice Patients Alliance works hard to promote quality hospice care throughout the USA. If you would like to support our mission, we hope you will consider supporting our mission through a donation. Hospice Patients Alliance is a 501(c)(3) charitable nonprofit corporation and your donations are deductible to the full extent allowed by law.

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