Protection for the Disabled

To: US Senate We the undersigned would like to petition the US Senate to please pass the House version of the Bill to protect the Disabled. Bill number H.R. 1151, “Incapacitated Persons Legal Protection Act”, was introduced by Rep. Dave Weldon on Mar 8th.

With Terri Schindler Schiavo's dehydration and starvation death today, we feel that this bill was the correct version to pass and needs to be resubmitted to the full Senate in honor of Terri. We want this bill voted on, so that we know where our Senators stand on this crucial matter.

A BILL To amend title 28, United States Code, to provide the protections of habeas corpus for certain incapacitated individuals whose life is in jeopardy, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

This Act may be cited as the `Incapacitated Persons Legal Protection Act of 2005'.

(1) Under the Fourteenth Amendment to the Constitution of the United States, `No State . . . shall deprive any person of life . . . without due process of law...nor deny to any person within its jurisdiction the equal protection of the laws.'

(2) Section 5 of the Fourteenth Amendment empowers Congress `to enforce, by appropriate legislation, the provisions' of the Amendment. The United States Supreme Court has held that under this section, while Congress may not work a `substantive change in the governing law' under the other sections of the Fourteenth Amendment, it may adopt remedial measures exhibiting `a congruence and proportionality between the injury to be prevented or remedied and the means adopted to that end.' Tennessee v. Lane, 541 U.S. 509, 21 (2004); City of Boerne v. Flores, 521 U.S. 507, 519-20 (1997).

(1) to facilitate balancing the acknowledged right of persons to refuse consent to medical treatment and unwanted bodily intrusions with the right to consent to treatment, food, and fluids so as to preserve their lives; and

(2) in circumstances in which there is a contested judicial proceeding because of dispute about the expressed previous wishes or best interests of a person presently incapable of making known a choice concerning treatment, food, and fluids the denial of which will result in death, to provide that the fundamental due process and equal protection rights of incapacitated persons are protected by ensuring the availability of collateral review through habeas corpus proceedings.

(a) In General- Chapter 153 of title 28, United States Code, is amended by striking section 2256 and inserting the following:

`Sec. 2256. Extension of habeas protections to certain persons subject to court orders

`(a) For the purposes of this chapter, an incapacitated person shall be deemed to be in custody under sentence of a court established by Congress, or deemed to be in custody pursuant to the judgment of a State Court, as the case may be, when an order of such a court authorizes or directs the withholding or withdrawal of food or fluids or medical treatment necessary to sustain the person's life. In a habeas corpus proceeding under this section the person having custody shall be deemed to encompass those parties authorized or directed by the court order to withdraw or withhold food, fluids, or medical treatment, and there shall be no requirement to produce at the hearing the body of the incapacitated person.

`(b) Subsection (a) does not apply in the case of a judicial proceeding in which no party disputes, and the court finds, that the incapacitated person, while having capacity, had executed a written advance directive valid under applicable law that clearly authorized the withholding or withdrawal of food or fluids or medical treatment in the applicable circumstances.

`(c) As used in this section, the term `incapacitated person' means an individual who is presently incapable of making relevant decisions concerning the provision, withholding, or withdrawal of food, fluids or medical treatment under applicable state law.

`(d) Nothing in this section shall be construed to create substantive rights not otherwise secured by the Constitution and laws of the United States or of the several States. '.

(b) Clerical Amendment- The item relating to section 2256 in the table of sections at the beginning of chapter 153 of title 28, United States Code, is amended to read as follows:

`2256. Extension of habeas protections to certain persons subject to court orders.'.

(c) Prospective Effect- The remedies specified by this Act shall be available on behalf of any incapacitated person deemed to be in custody by its terms who is alive on or after the effective date of this Act.

Below is my research into the Patient Self-Determination Act of 1990. It evidently was passed as part of the Omnibus Budget Reconciliation Act of 1990. They refer to it in part 3 and Bill H.R.5067 is listed as a related bill.

The sponsors were:
Mr. LEVIN of Michigan (for himself, Mr. SWIFT, Mr. WAXMAN, Mr. MOODY, Mr. FAUNTROY, Mr. MCDERMOTT, Ms. PELOSI, Mr. FOGLIETTA, and Mr. LEWIS of Georgia) introduced the following bill; which was referred jointly to the Committees on Ways and Means, and Energy and Commerce

It looks to me as if the hospice may have violated this law.

`(B) to document in the individual's medical record whether or not the individual has executed an advance directive;
`(D) to ensure compliance with requirements of State law respecting advance directives at facilities of the provider or organization;
`(3) In this subsection, the term `advance directive' means a written instruction, such as a living will or durable power of attorney for health care, recognized under State law and relating to the provision of such care when the individual is incapacitated.'.

When the hospice first took Terri, they were required by law to document in the individual's medical record whether or not the individual has executed an advance directive;

At the time she first entered the hospice, the case was not decided, so they should have had documentation in Terri's medical record that she did not have an advanced directive.

If they did not, then it looks like the hospice violated Federal law.
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Patient Self Determination Act of 1990 (Introduced in House)
HR 5067 IH
101st CONGRESS
2d Session
H. R. 5067
To amend titles XVIII and XIX of the Social Security Act to require providers of services and health maintenance organizations under the medicare and medicaid programs to assure that individuals receiving services will be given an opportunity to participate in and direct health care decisions affecting themselves.
IN THE HOUSE OF REPRESENTATIVES
June 18, 1990
Mr. LEVIN of Michigan (for himself, Mr. SWIFT, Mr. WAXMAN, Mr. MOODY, Mr. FAUNTROY, Mr. MCDERMOTT, Ms. PELOSI, Mr. FOGLIETTA, and Mr. LEWIS of Georgia) introduced the following bill; which was referred jointly to the Committees on Ways and Means, and Energy and Commerce

A BILL
To amend titles XVIII and XIX of the Social Security Act to require providers of services and health maintenance organizations under the medicare and medicaid programs to assure that individuals receiving services will be given an opportunity to participate in and direct health care decisions affecting themselves.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the `Patient Self Determination Act of 1990'.
SEC. 2. MEDICARE PROVIDER AGREEMENTS ASSURING THE IMPLEMENTATION OF A PATIENT'S RIGHT TO PARTICIPATE IN AND DIRECT HEALTH CARE DECISIONS AFFECTING THE PATIENT.
(a) IN GENERAL- Section 1866(a)(1) of the Social Security Act (42 U.S.C. 1395cc(a)(1)) is amended--
(1) in subsection (a)(1)--
(A) by striking `and' at the end of subparagraph (O),
(B) by striking the period at the end of subparagraph (P) and inserting `, and', and
(C) by inserting after subparagraph (P) the following new subparagraph:
`(Q) in the case of hospitals, skilled nursing facilities, home health agencies, and hospice programs, to comply with the requirement of subsection (f) (relating to maintaining written policies and procedures respecting advance directives).'; and
(2) by inserting after subsection (e) the following new subsection:
`(f)(1) For purposes of subsection (a)(1)(Q) and sections 1819(c)(2)(E), 1833(r), 1876(c)(8), and 1891(a)(6), the requirement of this subsection is that a provider of services or prepaid or eligible organization (as the case may be) maintain written policies and procedures with respect to all adult individuals receiving medical care by or through the provider or organization--
`(A) to provide written information to each such individual concerning--
`(i) an individual's rights under State law (whether statutory or as recognized by the courts of the State) to make decisions concerning such medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advance directives (as defined in paragraph (3)), and
`(ii) the written policies of the provider or organization respecting the implementation of such rights;
`(B) to document in the individual's medical record whether or not the individual has executed an advance directive;
`(C) not to condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive;
`(D) to ensure compliance with requirements of State law respecting advance directives at facilities of the provider or organization; and
`(E) to provide (individually or with others) for education for staff and the community on issues concerning advance directives.
Subparagraph (C) shall not be construed as requiring the provision of care which conflicts with an advance directive.
`(2) The written information described in paragraph (1)(A) shall be provided to an adult individual--
`(A) in the case of a hospital, at the time of the individual's admission as an inpatient,
`(B) in the case of a skilled nursing facility, at the time of the individual's admission as a resident,
`(C) in the case of a home health agency, in advance of the individual coming under the care of the agency,
`(D) in the case of a hospice program, at the time of initial receipt of hospice care by the individual from the program, and
`(E) in the case of an eligible organization (as defined in section 1876(b)) or an organization provided payments under section 1833(a)(1)(A), at the time of enrollment of the individual with the organization.
`(3) In this subsection, the term `advance directive' means a written instruction, such as a living will or durable power of attorney for health care, recognized under State law and relating to the provision of such care when the individual is incapacitated.'.
(b) APPLICATION TO PREPAID ORGANIZATIONS-
(1) ELIGIBLE ORGANIZATIONS- Section 1876(c) of such Act (42 U.S.C. 1395mm(c)) is amended by adding at the end the following new paragraph:
`(8) A contract under this section shall provide that the eligible organization shall meet the requirement of section 1866(f) (relating to maintaining written policies and procedures respecting advance directives).'.
(2) OTHER PREPAID ORGANIZATIONS- Section 1833 of such Act (42 U.S.C. 1395l) is amended by adding at the end the following new subsection:
`(r) The Secretary may not provide for payment under subsection (a)(1)(A) with respect to an organization unless the organization provides assurances satisfactory to the Secretary that the organization meets the requirement of section 1866(f) (relating to maintaining written policies and procedures respecting advance directives).'.
(c) CONFORMING AMENDMENTS-
(1) Section 1819(c)(1) of such Act (42 U.S.C. 1395i-3(c)(1)) is amended by adding at the end the following new subparagraph:
`(E) INFORMATION RESPECTING ADVANCE DIRECTIVES- A skilled nursing facility must comply with the requirement of section 1866(f) (relating to maintaining written policies and procedures respecting advance directives).'.
(2) Section 1891(a) of such Act (42 U.S.C. 1395bbb(a)) is amended by adding at the end the following:
`(6) The agency complies with the requirement of section 1866(f) (relating to maintaining written policies and procedures respecting advance directives).'.
(d) EFFECTIVE DATES-
(1) The amendments made by subsections (a) and (c) shall apply with respect to services furnished on or after the first day of the first month beginning more than 1 year after the date of the enactment of this Act.
(2) The amendments made by subsection (b) shall apply to contracts under section 1876 of the Social Security Act and payments under section 1833(a)(1)(A) of such Act as of first day of the first month beginning more than 1 year after the date of the enactment of this Act.
SEC. 3. MEDICAID STATE PLANS ASSURING THE IMPLEMENTATION OF A PATIENT'S RIGHT TO PARTICIPATE IN AND DIRECT HEALTH CARE DECISIONS AFFECTING THE PATIENT.
(a) IN GENERAL- Section 1902 of the Social Security Act (42 U.S.C. 1396a(a)) is amended--
(1) in subsection (a)--
(A) by striking `and' at the end of paragraph (52),
(B) by striking the period at the end of paragraph (53) and inserting `; and', and
(C) by inserting after paragraph (53) the following new paragraph:
`(54) provide that each hospital, nursing facility, provider of home health care or personal care services, hospice program, or health maintenance organization (as defined in section 1903(m)(1)(A)) receiving funds under the plan shall comply with the requirement of subsection(s).'; and
(2) by adding at the end the following new subsection:
`(s)(1) For purposes of subsection (a)(54) and sections 1903(m)(1)(A) and 1919(c)(2)(E), the requirement of this subsection is that a provider or organization (as the case may be) maintain written policies and procedures with respect to all adult individuals receiving medical care by or through the provider or organization--
`(A) to provide written information to each such individual concerning--
`(i) an individual's rights under State law (whether statutory or as recognized by the courts of the State) to make decisions concerning such medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advance directives (as defined in paragraph (3)), and
`(ii) the hospital's written policies respecting the implementation of such rights;
`(B) to document in the individual's medical record whether or not the individual has executed an advance directive;
`(C) not to condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive;
`(D) to ensure compliance with requirements of State law respecting advance directives; and
`(E) to provide (individually or with others) for education for staff and the community on issues concerning advance directives.
Subparagraph (C) shall not be construed as requiring the provision of care which conflicts with an advance directive.
`(2) The written information described in paragraph (1)(A) shall be provided to an adult individual--
`(A) in the case of a hospital, at the time of the individual's admission as an inpatient,
`(B) in the case of a nursing facility, at the time of the individual's admission as a resident,
`(C) in the case of a provider of home health care or personal care services, in advance of the individual coming under the care of the provider,
`(D) in the case of a hospice program, at the time of initial receipt of hospice care by the individual from the program, and
`(E) in the case of a health maintenance organization, at the time of enrollment of the individual with the organization.
`(3) In this subsection, the term `advance directive' means a written instruction, such as a living will or durable power of attorney for health care, recognized under State law and relating to the provision of such care when the individual is incapacitated.'.
(b) CONFORMING AMENDMENTS-
(1) Section 1903(m)(1)(A) of such Act (42 U.S.C. 1396b(m)(1)(A)) is amended--
(A) by inserting `meets the requirement of section 1902(s)' after `which' the first place it appears, and
(B) by inserting `meets the requirement of section 1902(a) and' after `which' the second place it appears.
(2) Section 1919(c)(2) of such Act (42 U.S.C. 1396r(c)(2)) is amended by adding at the end the following new subparagraph:
`(E) INFORMATION RESPECTING ADVANCE DIRECTIVES- A nursing facility must comply with the requirement of section 1902(s) (relating to maintaining written policies and procedures respecting advance directives).'.
(c) EFFECTIVE DATE- The amendments made by this section shall apply with respect to services furnished on or after the first day of the first month beginning more than 1 year after the date of the enactment of this Act.
SEC. 4. STUDY TO ASSESS IMPLEMENTATION OF A PATIENT'S RIGHT TO PARTICIPATE IN AND DIRECT HEALTH CARE DECISIONS AFFECTING THE PATIENT.
(a) IN GENERAL- The Secretary of Health and Human Services shall (subject to subsection (b)) enter into an agreement with the Institute of Medicine of the National Academy of Sciences to conduct a study with respect to the context in which directed health care decisions (including advance directives) are made and carried out, including the incidence and processes of decision-making about life-sustaining treatment that occur with and without advance directives.
(b) ARRANGEMENTS FOR STUDY- The Secretary shall request the Institute of Medicine of the National Academy of Sciences to submit an application to conduct the study described in subsection (a). If the Institute submits an acceptable application, the Secretary shall enter into an appropriate arrangement with the Academy for the conduct of the study within 28 days of the date the application is received. If the Institute does not submit an acceptable application to conduct the study, the Secretary may request one or more appropriate nonprofit private entities to submit an application to conduct the study and may enter into an appropriate arrangement for the conduct of the study by the entity which submits the best acceptable application.
(c) REPORT- The results of the study shall be reported to the Committees on Ways and Means and Energy and Commerce of the House of Representatives and the Committee on Finance of the Senate and the Secretary by not later than 4 years after the date of the enactment of this Act. Such report shall include such recommendations for legislation as may be appropriate to carry out further the purpose of this Act.
SEC. 5. PUBLIC EDUCATION DEMONSTRATION PROJECT.
The Secretary of Health and Human Services, no later than 6 months after the date of the enactment of this Act, shall develop and implement a demonstration project in selected States to inform the public of the option to execute advance directives and of a patient's right to participate and direct health care decisions. The Secretary shall report to the Committees on Ways and Means and Energy and Commerce of the House of Representatives and the Committee on Finance of the Senate on the results of the project and on whether such project should be expanded to cover all the States.

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