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hospice patient's rights

Patient Bill of Rights

Hospice patients have a right to be notified in writing of their rights and obligations before treatment begins and to exercise those rights. The patient's family or guardian may exercise the patient's rights when the patient has been judged incompetent. Advocate Hospice has an obligation to protect and promote the rights of their patients, including the following rights:

A Right to Dignity and Respect

Hospice patients and their caregivers have a right to not be discriminated against based on race, color, religion, national origin, age, sex, or handicap. Furthermore, patients and caregivers have a right to mutual respect and dignity, including respect for property. Advocate associates are prohibited from accepting personal gifts and borrowing from patients.

Patients have the right:

  • to have relationships with hospice staff that are based on honesty and ethical standards of conduct;
  • to be involved and receive support in the resolution of ethical issues concerning their hospice care;
  • to be informed of the procedure they can follow to report a complaint to the hospice provider about the care that is, or fails to be, furnished and about 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;
  • to be advised of the telephone number and hours of operation of the state's hospice "hot line" which receives questions and complaints about local hospice agencies, including implementation of advance directive requirements; and
  • to be offered a qualified sign/language interpreter to assist you in communicating with us.

Decision Making

Patients have the right:

  • to be notified in advance about the care that is to be furnished, the types of caregivers who will provide care, and the frequency of the visits that are proposed;
  • to be advised of any change in the plan of care before the change is made;
  • to be informed of the hospice medical diagnosis and prognosis for care;
  • 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 be informed in writing of rights under state law to make decisions concerning medical care, including the right to accept or refuse treatment and the right to formulate advance directives;
  • to be informed in writing of policies and procedures for implementing advance directives, including any limitations if the provider cannot implement an advance directive on the basis of conscience;
  • to have health care providers comply with advance directives in accordance with state law requirements;
  • to receive care without condition on, or discrimination based on, the execution of advance directives;
  • to refuse service without fear of reprisal or discrimination; and
  • to be involved in decisions to withhold resuscitation and forego or withdraw life sustaining care.

Privacy

Patients have the right:

  • to confidentiality of the medical record as well as information about their health, social, and financial circumstances and about what takes place in the home; and
  • to expect the hospice provider to release information only as required by law or authorized by the patient and to be informed of procedures for disclosure.

Financial Responsibility

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 home care provider;
  • to be informed of the 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, before the care is initiated and within 30 calendar days of the date the hospice provider becomes aware of any changes; and
  • to have access, upon request, to all bills for service the patient has received regardless of whether the bills are paid out-of-pocket or by another party.

Quality of Care

Patients have the right:

  • to receive care of the highest quality;
  • to be admitted by Advocate only if it has the resources needed to provide the care safely and at the required level of intensity, as determined by a professional assessment; and by informing the patient of any limitations so an informed decision can be made regarding service;
  • to appropriate assessment and management of pain and other symptoms; and
  • to be told what to do in the case of emergency.

Advocate Hospice shall assure that:

  • all medically related hospice is provided in accordance with physician's orders and that a plan of care specifies the services and their frequency and duration;
  • all medically related personal care is provided by an appropriately trained hospice aide who is supervised by a hospice registered nurse; and
  • patients participate in prompt and orderly transfer to other organizations or level of care and service.

Patient Responsibility

Patients have the responsibility:

  • to notify the provider of any change in their condition, (e.g., hospitalization, changes in the plan of care, symptoms to be reported);
  • to participate in and to follow the plan of care;
  • to notify the provider of any concerns about their understanding or their ability to follow the plan of care;
  • to notify the provider if the visit schedule needs to be changed;
  • to notify the provider of any changes in insurance coverage for hospice;
  • to inform providers of the existence of any changes made to advance directives;
  • to advise the provider of any problems or dissatisfaction with the services provided;
  • to provide a safe home environment for the delivery of care and services by the Advocate employee;
  • to carry out mutually agreed responsibilities; and
  • to notify Advocate when a piece of equipment is no longer needed or not functioning
  • to notify us if the caregiver can no longer meet his/her responsibilities.

Advance Directives

You have the right to make decisions about the health care you get now and in the future. An advance directive is a written statement you prepare about how you want your medical decisions to be made in the future, if you are no longer able to make them for yourself. A do not resuscitate order (DNR order) is a medical treatment order that says cardiopulmonary resuscitation (CPR) will not be used if your heart or breathing stops.

Federal law requires that you be told of your right to make an advance directive when you are admitted to a health care facility. Illinois law allows for the following three types of advance directives: (1) health care power of attorney; (2) living will; and (3) mental health treatment preference declaration. In addition, you can ask your physician to work with you to prepare a DNR order. You may choose to discuss with your doctor different types of advance directives and DNR orders. After reviewing information regarding advance directives and DNR orders, you may decide to make more than one. For example, you could make a health care power of attorney and a living will.

If you make one or more advance directives and/or a DNR order, tell your doctor and other health care providers and provide them with a copy. You may also want to provide a copy to family members, and to those you appoint to make these decisions for you.

State law provides copies of sample advance directives forms and DNR order forms.

Health Care Power of Attorney

The health care power of attorney lets you choose someone to make health care decisions for you in the future, if you are no longer able to make these decisions for yourself. You are called the "principal" in the power of attorney form and the person you choose to make decisions is called your "agent." Your agent would make health care decisions for you if you were no longer able to makes these decisions for yourself. So long as you are able to make these decisions, you will have the power to do so. You may use a standard health care power of attorney form or write your own. You may give your agent specific directions about the health care you do or do not want.

The agent you choose cannot be your doctor or other health care provider. You should have someone who is not your agent witness your signing of the power of attorney.

The power of your agent to make health care decisions on your behalf is broad. Your agent would be required to follow any specific instructions you give regarding care you want provided or withheld. For example, you can say whether you want all life-sustaining treatments provided in all events; whether and when you want lifesustaining treatment ended; instructions regarding refusal of certain types of treatments on religious or other personal grounds; and instructions regarding anatomical gifts and disposal of remains. Unless you include time limits, the health care power of attorney will continue in effect from the time it is signed until your death. You can cancel your power of attorney at any time, either by telling someone or by canceling it in writing. You can name a backup agent to act if the first one cannot or will not take action. If you want to change your power of attorney, you must do so in writing.

Living Will

A living will tells your doctor whether you want death-delaying procedures used if you have a terminal condition and are unable to state your wishes. A living will, unlike a health care power of attorney, only applies if you have a terminal condition. A terminal condition means an incurable and irreversible condition such that death is imminent and the application of any death delaying procedures serves only to prolong the dying process.

Even if you sign a living will, food and water cannot be withdrawn if it would be the only cause of death. Also, if you are pregnant and doctors think you could have a live birth, your living will cannot go into effect.

You can use a standard living will form or write your own. You may write specific directions about the death-delaying procedures you do or do not want.

Two people must witness your signing of the living will. Your doctor cannot be a witness. It is your responsibility to tell your doctor if you have a living will if you are able to do so. You can cancel your living will at any time, either by telling someone or by canceling it in writing.

If you have both a health care power of attorney and a living will, the agent you name in your power of attorney will make your health care decisions unless he or she is unavailable.

Mental Health Treatment Preference Declaration

A mental health treatment preference declaration lets you say if you want to receive electroconvulsive treatment (ECT) or psychotropic medicine when you have a mental illness and are unable to make these decisions for yourself. It also allows you to say whether you wish to be admitted to a mental health facility for up to 17 days of treatment.

You can write your wishes and/or choose someone to make your mental health decisions for you. In the declaration, you are called the "principal" and the person you choose is called an "attorney-in-fact." Neither your doctor nor any employee of a health care facility in which you reside may be your attorney-in-fact. Your attorney-in-fact must accept the appointment in writing before he or she can start making decisions regarding your mental health treatment. The attorneyin- fact must make decisions consistent with any desires you express in your declaration unless a court orders differently or an emergency threatens your life or health.

Your mental health treatment preference declaration expires three years from the date you sign it. Two people must witness you signing the declaration. The following people may not witness your signing of the declaration: your doctor; an employee of a health care facility in which you reside; or a family member related by blood, marriage or adoption. You may cancel your declaration in writing prior to its expiration as long as you are not receiving mental health treatment at the time of cancellation. If you are receiving mental health treatment, your declaration will not expire and you may not cancel it until the treatment is successfully completed.

Do-Not-Resuscitate Order

You may also ask your doctor about a do-not-resuscitate order (DNR order). A DNR order is a medical order stating that cardiopulmonary resuscitation (CPR) will not be started if your heart or breathing stops. You may sign a document directing that should your heart or breathing stop, efforts to resuscitate you will not be started. Your attending physician may also sign a DNR order.

Before a DNR order may be entered into your medical record, either you or another person (your legal guardian, health care power of attorney or surrogate decision maker) must consent to the DNR order. This consent must be witnessed by two people who are 18 years or older. If a DNR order is entered into your medical record, appropriate medical treatment other than CPR will be given to you.

What happens if you don't have an advance directive?

Under Illinois law, a health care "surrogate" may be chosen for you if you cannot make health care decisions for yourself and do not have an advance directive. A health care surrogate will be one of the following persons (in order of priority): guardian of the person, spouse, any adult child(ren), either parent, any adult brother or sister, any adult grandchild(ren), a close friend, or guardian of the estate.

The surrogate can make all health care decisions for you, with certain exceptions. A health care surrogate cannot tell your doctor to withdraw or withhold lifesustaining treatment unless you have a "qualifying condition," which is a terminal condition, permanent unconsciousness, or an incurable or irreversible condition. A "terminal condition" is an incurable or irreversible injury for which there is no reasonable prospect of cure or recovery, death is imminent and lifesustaining treatment will only prolong the dying process. "Permanent unconsciousness" means a condition that, to a high degree of medical certainty, will last permanently, without improvement; there is no thought, purposeful social interaction or sensory awareness present; and providing life-sustaining treatment will only have minimal medical benefit.

An "incurable or irreversible condition" means an illness or injury for which there is no reasonable prospect for cure or recovery, that ultimately will cause the patient's death, that imposes severe pain or an inhumane burden on the patient, and for which life-sustaining treatment will have minimal medical benefit.

Two doctors must certify that you cannot make decisions and have a qualifying condition in order to withdraw or withhold life-sustaining treatment. If your health care surrogate decision maker decides to withdraw or withhold life-sustaining treatment, this decision must be witnessed by a person who is 18 years or older. A health care surrogate may consent to a DNR order, however, this consent must be witnessed by two individuals 18 years or older.

A health care surrogate, other than a court-appointed guardian, cannot consent to certain mental health treatments, including treatment by electroconvulsive therapy (ECT), psychotropic medication or admission to a mental health facility. A health care surrogate can petition a court to allow these mental health services.

Talk to Your Family

You should talk with your family, your doctor, and any agent or attorney-in-fact that you appoint about your decision to make one or more advance directives or a DNR order. If they know what health care you want, they will find it easier to follow your wishes. If you cancel or change an advance directive or a DNR order in the future, remember to tell these same people about the change or cancellation.

No facility, doctor or insurer can make you execute an advance directive or DNR Order as a condition of providing treatment or insurance. It is entirely your decision. If a facility, doctor or insurer objects to following your advance directive or DNR order then they must tell you or the individual responsible for making your health care decisions. They must continue to provide care until you or your decision maker can transfer you to another health care provider who will follow your advance directive or DNR order.


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