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 health care decisions for themselves or loved ones. Our Patient's Rights section addresses the concerns of patients and their families when entering into end-of-life care. It is our hope that you will find this section helpful to you as you make this important decision.

Patient Bill of Rights

The Hospice Association of America has developed the following Hospice Patients' Bill of Rights, which is widely accepted by hospices in the United States.

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/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 payor 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

The Rights of the Dying*

What rights do we experience at the end of life?
You have the right to relief of pain, to refuse any treatment that is not consistent with your goals of care, to make your wishes made known in advance, and to have access to hospice and palliative care.

Can I still see my personal physician after being terminally diagnosed?
Yes, you may keep your doctor. Hospice will work with your physician regarding your terminal illness. Your doctor is able to bill Medicare for his oversight of your case while you are receiving hospice care.

If I don't like my hospice, can I choose another?
Yes, you can choose another hospice should you become dissatisfied with your current one.

What if I change my mind regarding hospice care?
You can choose to stop receiving hospice care at any time. You are in control of the care you receive.

Patient Rights FAQ

The right to be treated as a living human being.

The right to maintain a sense of hopefulness, however changing its focus may be.

The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.

The right to express feelings and emotions about death in one's own way.

The right to participate in all decisions concerning one's care.

The right to be cared for by the compassionate, sensitive, knowledgeable people who will attempt to understand one's needs.

The right to expect continuing medical care, even though the goals may change from "cure" goals to "comfort" goals.

The right to have all questions answered honestly and fully.

The right to seek spirituality.

The right to be free of physical pain.

The right to express feelings and emotions about pain in one's own way.

The right of children to participate in death.

The right to understand the process of death.

The right to die.

The right to die in peace and dignity.

The right not to die alone.

The right to expect that the sanctity of the body will be respected after death.

*Adapted from David Kessler's book, The Rights of the Dying, Harper Collins Publishers 1997