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Hospice Patients' Bill Of Rights

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The Hospice Association of America has developed a Hospice Patients' Bill of Rights. Although hospice organizations do not have to comply, the Bill of Rights provides a guideline for the level of quality care that you should expect and demand from your hospice organization. 

Patient 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.

Dignity and Respect: Patients and their hospice caregivers have a right to mutual respect and dignity. 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; and  
  • To voice their grievances without fear of discrimination or reprisal for having done so.

Caregivers are prohibited from accepting personal  gifts and borrowing from patients or the patient's family or primary caregivers.

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 frequencyof 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 thecare, 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;and
  • 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, andfinancial circumstances and about what takes place in the home; and
  • To expect the hospice organization to release information only as consistentwith 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 payor known to the hospice organization;  
  • To be informed of any charges that will not be covered by Medicare or other payor; 
  • 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, on request, to all bills for service received, regardless of whether they are paid out of pocket or by another party; and  
  • 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 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; and  
  • To be told what to do in the case of an emergency. 

 The hospice organization shall assure that

  • All medically related hospice care is provided in accordance with physician's orders and that a plan of care, which is developed by the patient's physician and the hospice interdisciplinary group in conjunction with the patient, specifies the services to be provided and their frequency and duration; and  
  • All  medically related personal care is provided by an appropriately trained home care aide who is supervised by a nurse or other qualified hospice professional.

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