Patient Rights

Many patients and families considering end-of-life care are concerned that once the decision is made to access hospice and palliative care that they will lose the power to make healthcare decisions for themselves or loved ones. Below we address the concerns of patients and their families when entering into end-of-life care by explaining the Hospice Patient’s Bill of Rights developed by the Hospice Association of America.

Patient Bill of Rights

Patients have a right to be notified in writing of their rights and obligations before hospice care begins. Consistent with state laws, the patient's family or guardian may exercise the patient's rights when the patient is unable to do so. Hospice organizations have an obligation to protect and promote the rights of their patients, including the following:

Patients and their hospice caregivers have a right to mutual respect and dignity. Hospice staff and volunteers are prohibited from accepting personal gifts and borrowing from patients, families and/or primary caregivers.

Dignity and Respect

Patients have the right:

  • to have relationships with hospice organizations that are based on honesty and ethical standards of conduct
  • to be informed of the procedures they can follow to lodge complaints with the hospice organization about the care that is (or fails to be) furnished and regarding a lack of respect for property
  • to know about the disposition of such complaints
  • to voice their grievances without fear of discrimination or reprisal for having done so

Decision-Making

Patients have the right:

  • to be notified in writing of the care that is to be furnished, the types (disciplines) of caregivers who will furnish the care, and the frequency of the services that are proposed to be furnished
  • to be advised of any change in the plan of care before the change is made
  • to participate in the planning of the care and in planning changes in the care, and to be advised that they have the right to do so
  • to refuse services and to be advised of the consequences of refusing care
  • to request a change in caregiver without fear of reprisal or discrimination

The hospice organization or the patient's physician may be forced to refer the patient to another source of care if the client's refusal to comply with the plan of care threatens to compromise the provider's commitment to quality care.

Privacy

Patients have the right:

  • to confidentiality with regard to information about their health, social and financial circumstances and about what takes place in their home
  • to expect the hospice organization to release information only as consistent with its internal policy, required by law or authorized by the client

Financial

Patients have the right:

  • to be informed of the extent to which payment may be expected from Medicare, Medicaid or any other payer known to the hospice organization
  • to be informed of any charges that will not be covered by Medicare
  • to be informed of the charges for which the patient may be liable
  • to receive this information, orally and in writing, within 15 working days of the date the hospice organization becomes aware of any changes in charges
  • to have access, upon request, to all bills for service received, regardless of whether they are paid out-of-pocket or by another party
  • to be informed of the hospice's ownership status and its affiliation with any entities to which the patient is referred 

Quality of Care

Patients have the right:

  • to receive care of the highest quality
  • to be admitted by a hospice organization only if it is assured that all necessary palliative and supportive services will be provided to promote the physical, psychological, social and spiritual well-being of the dying patient. An organization with less than optimal resources may, however, admit the patient if a more appropriate hospice organization is not available – but only after fully informing the client of its limitations and the lack of suitable alternative arrangements 
  • to be told what to do in the case of an emergency