One of the more significant revisions to the Hospice Conditions of Participation Final Rule (“Final Rule”) are the new Patient Rights provisions found at 42 CFR 418.52. These new requirements greatly expand the rights of hospice patients from the former informed consent provision, which simply required hospices to demonstrate respect for an individual’s rights by ensuring that an informed consent form was obtained from each hospice patient that specified the type of care and services provided. The new COPs, by contrast, designate certain specific patient rights and notice requirements. These new patient-focused provisions require hospices to ensure that each hospice patient has the unencumbered right to:

• Exercise his or her rights as a hospice patient;

• Have his or her property and person treated with respect;

• Voice grievances regarding treatment or care that is (or fails to be) furnished and the lack of respect for property by anyone who is furnishing services on behalf of hospice;

• Not be subjected to discrimination or reprisal for exercising his or her rights;

• Receive effective pain management and symptom control for related conditions;

• Be involved in developing his or her hospice plan of care;

• Refuse care or treatment;

• Choose his or her attending physician;

• Have a confidential clinical record;

• Be free from mistreatment, neglect or abuse, including injuries of unknown source, and misappropriation of patient property;

• Receive information about the services covered under the hospice benefit; and

• Receive information about the scope of services that the hospice will provide and the specific limitations on those services.

In addition to the specific patient rights outlined above, the hospice must ensure that all allegations involving mistreatment, neglect or abuse, including injuries of unknown source, and misappropriation of patient property by anyone furnishing services on behalf of the hospice are immediately reported to the hospice administrator, investigated in accordance with established procedures and appropriately corrected in accordance with state law. In addition, all verified violations must be reported to the appropriate state agencies within five (5) working days of the hospice’s becoming aware of the violation. Under the Final Rule, the rights of the patient may be exercised by the patient’s legal representative, who may be appointed by a court of proper jurisdiction or designated in accordance with state law.

The Final Rule also requires that hospices provide the patient or representative with verbal and written notice (“Notice”) of these patient rights during the initial assessment visit and prior to furnishing care, and obtain the patient’s or representative’s signature confirming that he or she has received a copy of the Notice. A copy of the Notice, signed by the patient or representative acknowledging receipt, must also be included in the patient’s clinical record. The verbal and written Notice must be given in a language and manner that the patient (or representative) understands. Moreover, comments in the preamble to the Final Rule provide that a hospice should make reasonable efforts to have written copies of the Notice available in languages that are commonly spoken in the hospice’s service area and ensure  that professional translators are secured to provide an objective translation of the written document. The use of family and friends for translation is acceptable only if a professional translator is not readily available because the patient speaks an uncommon language or if specifically requested by the patient.

Hospice providers should also be aware of additional hospice patient rights that may be required by state licensure laws, if any. For example, the North Carolina Hospice Licensure Act provides that hospice patients have the right to be informed of the hospice’s on-call service and the hospice’s procedures for discharge. A provider should have its Notice available in languages commonly spoken in its geographic service area and be prepared to translate the Notice into a language the patient understands, preferably through the use of a professional translator. These requirements became effective on December 2, 2008. In addition, providers should ensure that their policies and procedures demonstrate how the agency investigates and documents all allegations of mistreatment, neglect, abuse and misappropriation of patient property.

If some or all of these new requirements leave you wondering how to implement them and incorporate them into your agency’s policies and procedures, there’s help available. Many of the new COP patient rights requirements mirror similar provisions in the Nursing Home Reform Act. Accordingly, nursing home providers in particular have worked with similar regulatory requirements for years and most have well-established policies and procedures addressing these issues. So, if you’re looking for some guidance, touch base with one of your nursing home clients and ask to see its policies on patient rights issues, as a guide to developing your own.