Patient Self-Determination Act


Article Author:
Dac Teoli


Article Editor:
Sassan Ghassemzadeh


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Sherri Murrell
Joshua Ambrosio


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Hassam Zulfiqar
Navid Mahabadi
Steve Bhimji
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Matthew Varacallo
Ahmad Malik
Mark Pellegrini
James Hughes
Beata Beatty
Hajira Basit
Phillip Hynes


Updated:
2/4/2019 9:01:12 PM

Definition/Introduction

Patient Self Determination Act (PDSA) was an amendment proposed in 1990 and functions to amend titles XVIII and XIX of the Social Security Act (Medicare and Medicaid, respectively). The PSDA mandates that hospitals, skilled nursing facilities, hospice organizations, home health organizations, and HMO's perform a number of specific actions and ensure that other certain conditions are met. Among those mentioned above, it is required that patients be informed of their right to be involved in making decisions with regard to the medical care they receive. It is also required that the patient is asked about advanced directives, and to document any wishes the patient might have with regard to the care they want or do not want. It required that no discrimination take place by any healthcare organization against any patient putting forth advanced directives. It mandates that patient advanced directives be implemented if necessary, assuming those wishes are legally valid and permissible by State law. It requires education programs including advanced directives, bioethics, patient wishes, and the concept of patient self-determination. The PDSA went further to instruct the Secretary of the United States Department of Health and Human Services to coordinate an investigative study reviewing the implementation of advanced directive decisions. PDSA also asked to create and perform projects in specific locations across the country to build awareness of patient rights in the area of advanced directives and executing advanced directives. 

As listed on the legislative portion of the 101st Congress, the bill reads as the following:

"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 REPRESENTATIVESApril 3, 1990Mr. LEVIN of Michigan (for himself, Mr. SWIFT, Mr. MOODY, Mr. MCDERMOTT, and Mr. FAUNTROY) 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)), as amended by section 6112 of the Omnibus Budget Reconciliation Act of 1989, is amended--(1) by striking `and' at the end of subparagraph (O), (2) by striking the period at the end of subparagraph (P) and inserting `, and', and (3) 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 maintain written policies and procedures with respect to all individuals receiving medical care by or through the provider-- `(i) to inform such individuals of 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 advanced directives recognized under State law relating to the provision of care when such individuals are incapacitated (such a directive in this subparagraph referred to as an `advanced directive'), such as through-- `(I) the appointment of an agent or surrogate to make health care decisions on behalf of such an individual, and `(II) the provision of written instructions concerning the individual's health care (including instructions for the disposition of organs); `(ii) to inquire periodically (and to document in the individual's medical record) whether or not the individual has executed an advanced directive and to document in such record the individual's wishes (if any) with respect to such medical care; `(iii) not to deny the initial provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advanced directive; `(iv) to ensure that legally valid advanced directives and wishes otherwise documented under clause (ii) are implemented to the extent permissible under State law, including such provisions of State law as relate to the transfer of an individual in the case of a provider which, as a matter of conscience, cannot implement the wishes of the individual; and `(v) to provide (individually or with others) for educational programs for staff, individuals receiving medical care by or through the provider, and the community on ethical issues concerning patient self determination and concerning advance directives respecting such care.'.

(b) APPLICATION TO HEALTH MAINTENANCE 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 requirements of section 1866(a)(1)(Q) in the same manner as they apply to hospitals.'. (c) Effective Dates- (1) The amendments made by subsection (a) shall apply with respect to services furnished on or after the first day of the first month beginning more than 180 days after the date of the enactment of this Act. (2) The amendment made by subsection (b) shall apply to contracts under section 1876 of the Social Security Act as of the first day of the first month beginning more than 180 days 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(a) of the Social Security Act (42 U.S.C. 1396a(a)), as amended by section 6406(a) of the Omnibus Budget Reconciliation Act of 1989, is amended-- (1) by striking `and' at the end of paragraph (52), (2) by striking the period at the end of paragraph (53) and inserting `; and', and (3) by inserting after paragraph (53) the following new paragraph: `(54) provide that each hospital, nursing facility, home health agency, hospice program, or health maintenance organization receiving funds under the plan shall maintain written policies and procedures with respect to all individuals receiving medical care by or through the provider or organization-- `(A) to inform such individuals of 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 advanced directives recognized under State law relating to the provision of care when such individuals are incapacitated (such a directive in this paragraph referred to as an `advanced directive'), such as through-- `(i) the appointment of an agent or surrogate to make health care decisions on behalf of such an individual, and `(ii) the provision of written instructions concerning the individual's health care (including instructions for the disposition of  organs); `(B) to inquire periodically (and to document in the individual's medical record) whether or not the individual has executed an advanced directive and to document in such record the individual's wishes (if any) with respect to such medical care; `(C) not to deny the initial provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advanced directive; `(D) to ensure that legally valid advanced directives and wishes otherwise documented under subparagraph (B) are implemented to the extent permissible under State law, including such provisions of State law as relate to the transfer of an individual in the case of a provider or organization which, as a matter of conscience, cannot implement the wishes of the individual; and `(E) to provide (individually or with others) for educational programs for staff, individuals receiving medical care by or through the provider or organization, and the community on ethical issues concerning patient self determination and concerning advance directives respecting such care.'.

(b) EFFECTIVE DATE- The amendments made by subsection (a) shall apply with respect to services furnished on or after the first day of the first month beginning more than 180 days 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 implementation of directed health care decisions. Such study shall-- (1) evaluate the experience of practitioners, providers, and government regulators experienced in complying with the requirement imposed by the amendments made by sections 2(a) and 3(a); and (2) investigate methods of making decisions reached by a patient or nursing home resident transferrable, so that the wishes of the patient or resident can be known and respected in other health care settings to which the patient or resident may be transferred or discharged.

(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 Congress 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 in and direct health care decisions. The Secretary shall report to Congress on the results of the project and on whether such project should be expanded to cover all the States." [1][2][3][4][5]

Issues of Concern

There were several areas of concern surrounding the passage of this amendment. At the time, individual physicians were concerned about accusations of assisting suicide if withdrawing IV fluids, feeding tubes, etc. as it was not yet certain how the law would treat any subsequent accusations toward those trying to implement the PSDA into their clinical practice. There was a concern for malpractice liability if difficulty arose in implementing patient wishes for any reason. There was concern about physicians having to adapt their own moral compass; treating patients in a way they might not have before the passage of PSDA. There was concern that other individuals, from family and friends to insurance companies, might get involved and obstruct a physician from implementing a patient's wishes or advanced directives. Over the decades, many of these concerns have been put to rest as the amendment approaches its 30th anniversary. Nevertheless, there are new concerns and complexities which arise with the dynamic status of healthcare delivery.[5][6][7]

Clinical Significance

The clinical significance of the PSDA is severalfold. It made an official stance on advanced directives and the requirement to inform patients of their rights under state laws. It empowers patients to play a role in the decision-making process of their healthcare delivery. It aimed to prevent over- and under-treatment by arriving at a patient's specific wishes and having those wishes executed if the patient is unable to dictate their wishes in realtime due to incapacitation. It sought to also permit for decreased costs by giving patients the option to elect or decline expensive critical care/ICU interventions, in the face of certain death, due to terminal illness or catastrophic injury. Approaching 30 years since its acceptance, the PSDA remains controversial in its implementation and successes. Nevertheless, the innovative amendment changed the face of healthcare for millions of people: patients, their families, and their healthcare providers alike. [8][9][10]


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Patient Self-Determination Act - Questions

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Patient Self-Determination Act - References

References

Kring DL, The Patient Self-determination Act: has it reached the end of its life? JONA'S healthcare law, ethics and regulation. 2007 Oct-Dec;     [PubMed]
Koch KA, Patient Self-Determination Act. The Journal of the Florida Medical Association. 1992 Apr;     [PubMed]
Rosenberg M, The Patient Self-Determination Act. The New England journal of medicine. 1992 May 28;     [PubMed]
La Puma J,Orentlicher D,Moss RJ, Advance directives on admission. Clinical implications and analysis of the Patient Self-Determination Act of 1990. JAMA. 1991 Jul 17;     [PubMed]
Yates JL,Glick HR, The failed Patient Self-Determination Act and policy alternatives for the right to die. Journal of aging     [PubMed]
Pope TM, The maladaptation of Miranda to advance directives: a critique of the implementation of the Patient Self-Determination Act. Health matrix (Cleveland, Ohio : 1991). 1999 Winter;     [PubMed]
Leahman D, Why the Patient Self-Determination Act has failed. North Carolina medical journal. 2004 Jul-Aug;     [PubMed]
Mccabe MA,Rushton CH,Glover J,Murray MG,Leikin S, Implications of the Patient Self-Determination Act: guidelines for involving adolescents in medical decision making. The Journal of adolescent health : official publication of the Society for Adolescent Medicine. 1996 Nov;     [PubMed]
Galambos CM, Preserving end-of-life autonomy: the Patient Self-Determination Act and the Uniform Health Care Decisions Act. Health     [PubMed]
Thobaben M,Proctor C, Patient Self-Determination Act: advocating for the patient's wishes. Home care provider. 1996 May-Jun;     [PubMed]

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