Hospice Patients Alliance: Consumer Advocacy


Making a complaint about a hospice which currently is responsible for caring for your loved one or which was responsible for caring for your loved one (but did not comply with the hospice standards of care) is an important step to take in helping to improve the quality of hospice care for all patients, families and caregivers. All licensed hospices must meet the federal regulations governing participation in the Medicare program, even if the hospice is being reimbursed by a private insurance company or other source of payment ... the regulations are the same. The Centers for Medicare Services (CMS) requires all licensed hospices to meet the federal standards set forth in the Code of Federal Regulations: 42 CFR ch. iv part 418. If you have problems, speaking with the Hospice RN casemanager is the first step, then speak with the hospice's Medical Director and the Manager. You have a legal right to speak with these hospice staff. Do not allow yourself to be dissuaded from speaking with them if you have a problem which the RN casemanager cannot resolve.

Reporting Problems by Filing A Complaint

If clearly communicating with the hospice RN case manager, director, medical director or other staff does not quickly resolve the problem, then there are several ways to handle the situation. Delays more than a few days are not acceptable, because your loved one has only so much time left.

In situations where your loved one is in severe pain and proper pain medication is not being administered, then delays of even a few hours are not acceptable. If you have clearly communicated with the RN case manager, the hospice director and/or medical director and your loved one has not received the care that is needed for his or her terminal symptoms, then in these types of situations the situation needs to be corrected as soon as possible. A complaint to the following agencies is appropriate when problems remain unresolved.

  1. file a complaint with the State licensing division which inspects the hospice,
  2. file a complaint with the Joint Commision on Accreditation of Healthcare Organizations ("The Joint Commission" for short) if the hospice is The Joint Commission accredited
  3. file a complaint with the Community Health Accreditation Program ("C.H.A.P.") if the hospice is C.H.A.P. accredited.

Each of the above three agencies can and will inspect a hospice as a result of receiving a complaint in writing. However, filing a complaint alone will not bring action by the hospice, and inspectors may take weeks or months to respond! You will need to let the hospice agency know what your intentions are and that if care is not improved a complaint will be filed.

If Fraud is Occurring

Please note that if you suspect fraud is occurring (it is if the hospice is not providing services that Medicare, Medicaid or a private insurer is paying for), you can also report that health care fraud was committed. It is not helpful to report fraud to the State inspectors who investigate violations of the standards, as noted above.

Hospice committed Medicare fraud is reported to the
local U.S. Office of the Inspector General and U.S. Attorneys Office.

Hospice committed Medicaid fraud is reported to the
State Medicaid Fraud Control Units.

Hospice committed private health insurance fraud is reported to the individual fraud investigation units of the individual insurance company. If you don't know what the address is, you can call the National Health Care Anti-Fraud Association at 202-659-5955 or e-mail them at: fraud@nhcaa.org to get an address or telephone number where you can report fraud to the private insurer.

Reporting Problems with the Quality of Care to the State

If clearly communicating with the hospice on several levels does not quickly resolve the problem, then you should put a complaint into the State Licensing and Certification Division for your State. You can also place a complaint after your loved one has passed on, if you wish to prevent further problems from arising. See the State by State Directory of Addresses for Filing a Complaint.

Reporting Problems to the Joint Commission
on Accreditation of Healthcare Organizations

In addition, if the hospice is "The Joint Commission accredited" by the Joint Commission, then you should also put a complaint into the Joint Commission (tell the hospice you will be doing so...and they may hastily change their mind about refusing to provide adequate care for your loved one!). You can directly place a complaint with The Joint Commission over the Internet by accessing their website and clicking on the "General Public Menu," then clicking on "reporting a complaint" The Joint Commission's web address is: www.The Joint Commission.org. Their website offers much information about health care and standards of care. If you wish to send your complaint by mail, their mailing address is:

The Joint Commission
1 Renaissance Boulevard
Oakbrook Terrace, Illinois 60181

Reporting Problems to the
Community Health Accreditation Program

If the hospice is accredited by C.H.A.P. (the Community Health Accreditation Program), and the problems are not resolved, you can place a complaint with C.H.A.P. and they will investigate your allegations. C.H.A.P is authorized by the Centers for Medicare Services (CMS) to conduct investigations of hospices in place of State run investigations. C.H.A.P. states:

"All complaints regarding an accredited organization's [a hospice's], potential serious deviations from CHAP standards, or significant organizational changes reported to CHAP will be investigated by CHAP. Depending on the seriousness of the complaint, deviation, or change, a site visit may be made or written materials required. Allegations involving immediate and serious threat(s) to patient health and safety or involving problems that have the potential to affect the quality of care require site visits. All investigative findings will be shared with the appropriate parties (i.e. state DOH, CMS, complainant, and state license authority). "

"In an effort to assure that consumers have access to information necessary to make informed decisions regarding home care and community health services, names of organizations accredited by CHAP will be publicized, including any action taken by the Board of Review to withdraw accreditation from any organization. A short, easy-to-understand summary of the BOR report will be prepared for interested consumers which details the highlights of the accreditation visit. The complete Board of Review report will be made available to the public only upon written request."

Any complaints for C.H.A.P. investigation should be sent to their offices at:

Community Health Accreditation Program, Inc.
1300 19th Street NW, Suite 150
Washington, D.C. 20036

Need to Send Complaint by Certified Mail

Any complaints sent in should be mailed by U.S. certified/return-receipt mail clearly explaining your problem in clear, concise language, mentioning dates of problems, people or staff involved, and the name of the manager(s) at the hospice you spoke with about it.

Necessary Complaint Information

You can use the complaint form provided at this website or your own format, but we recommend that at a minimum you include all of the information listed below:

- Your full name, address and tel. number where you can be reached during the day.

- The date you write the letter, along with the Certified Mail Number given to you by the U.S. Post Office.

- The address for your State's Div. of Licensing and Certification (Complaint Division)

- The complete/full name of your loved one who is or was in hospice care, along with the hospice's own medical record/case number and the date your loved one was admitted to the hospice.

- The type of terminal illness involved.

- The names and titles/profession of the hospice managers who failed to make sure proper care was given to your loved one. If you believe that the hospice staff themselves sincerely tried to provide appropriate care, but were not allowed to do so by the hospice management, explain that in your complaint letter.

- The dates, times and circumstances when the hospice failed to provide adequate care or symptom management, etc.

- We recommend that you list each type of problem separately and number the problems. For example, if there were four problems you encountered, then state   "I am reporting four problems which I believe violate the standards of care." Then, list each problem by number. This will assist the State surveyors who read your report in clearly understanding what occurred and what to look for.

Be very specific about what shift and what date you are discussing if the problem occurred on a specific shift and time. If the care was poor throughout the time period your loved one was being cared for, state that and explain exactly what you believe was wrong with the care provided.

It is extremely helpful if you review the federal laws governing hospice and use the language of the law when describing a problem. For example, you might state, "The hospice failed to intervene to assure adequate pain control," or "The hospice failed to provide nursing care as needed..." and then explain exactly what happened. If you wish to go into detail and wish to fully understand what the state regulators look for, you also may wish to review the Hospice Survey and State Inspectors Manual (also called "HCFA Appendix M"). [Note: HCFA is now the Centers for Medicare Services. The inspectors manual is a "pdf" type file and requires the free: Adobe Acrobat Reader.] No hospice would ever show you this manual! After reviewing the law and the inspector's manual, write up your complaint, always keeping a copy of the complaint you sent in for future reference.

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