The document discusses various laws and issues related to end-of-life medical decisions and patient autonomy. It outlines the Patient Self-Determination Act, which aims to ensure patients' advance medical directives are followed. It also describes the Virginia Health Care Decisions Act and key concepts like terminal conditions and persistent vegetative states. It notes issues courts have addressed around patient and surrogate refusal of treatments, as well as state interests that can limit patient autonomy.

1. THE PATIENT SELF-DETERMINATION ACT VIRGINIA HEALTH CARE DECISIONS ACT HAD 611 Karen N. Swisher, MS, JD

2. MEDICAL SCIENCE IS MY SHEPHERD; I SHALL NOT WANT . IT MAKETH ME TO LIE DOWN IN HOSPITAL BEDS; IT LEADETH ME BESIDE THE MARVELS OF TECHNOLOGY; IT RESTORETH MY BRAIN WAVES; IT MAINTAINS ME IN A PERSISTENT VEGETATIVE STATE FOR IT’S NAME SAKE. YEAH, THOUGH I WALK THROUGH THE VALLEY OF THE SHADOW OF DEATH, I WILL FIND NO END TO LIFE; FOR THOU ART WITH ME; THY RESPIRATOR AND HEART MACHINE THEY SUSTAIN ME. THOU PREPAREST INTRAVENOUS FEEDING FOR ME. IN THE PRESENCE OF IRREVERSIBLE DISABILITY; THOU ANOINTEST MY HEAD WITH OIL MY CUP RUNNETH ON AND ON AND ON AND ON. SURELY COMA AND UNCONSCIOUSNESS SHALL FOLLOW ME ALL THE DAYS OF MY CONTINUED BREATHING; AND I WILL DWELL IN THE INTENSIVE CARE UNIT FOREVER A MODERN PSALM by Robert Fraser

3. What do we Know about Dying in America ? 80% die in a hospital most die in moderate to severe pain many die bankrupt paying for medical care most do not have living wills, DNR, medical power of attorney many are alienated from the medical system physicians are not trained to provide comforting care

4. WHAT DO WE KNOW ABOUT DOCTOR/PATIENT COMMUNICATION? doctors don’t listen to their patients doctors don’t talk about bad news patients don’t retain much information physicians are overly optimistic regarding prognosis physicians recommend treatments they would not take themselves physicians have only 20% firm clinical trial data to support what they do

5. THE RIGHT TO REFUSE MARGINALLY EFFECTIVE MEDICAL TREATMENTS most of these cases involve the typical right to die issues terminal ill patients, or their families seek legal intervention when they believe that continued medical treatments no longer benefits the patient and the patient wants to die naturally hospital administration/physicians refuse to discontinue aggressive treatments the general rule is that patients have the right to refuse all medical treatments even if refusal means death of a patient

6. OTHER ISSUES WHICH COURTS HAVE ADDRESSED IN REFUSAL CASES patient competence treatment modality (feeding tube, respirator) surrogate disagreements on treatment plan who pays for unwanted and marginally effective medical treatments physician’s duty to disclose statistical life expectancy data for marginally effective medical modalities

7. PATIENTS WHO REFUSE MEDICALLY INDICATED TREATMENT patients may refuse because of the cost of medicine

8. patients are afraid of pain . Half the patients who died in the hospital had moderate to severe pain at least half the time during their last few days nothing…shall prohibit the administration of medication or the performance of any medical procedure deemed necessary to provide comfort care or to alleviate pain, including the administration of excess dosages of pain relieving medications.

9. OTHER REASONS PATIENTS REFUSE INDICATED TREATMENTS against religious beliefs, Jehovah Witnesses cultural difference minority status undue influence of family members guilt

10. PATIENT AUTONOMY & INFORMED CONSENT Courts uphold the right of a patient to consent to or refuse any medical treatment Jay Katz wrote in The Silent World of Doctor and Patient, “disclosure and consent, except in the most rudimentary fashion, are obligations alien to medical thinking and practice...The function of disclosure historically was to get patients to agree to what the doctors wanted”.

11. STATE INTERESTS THAT LIMIT PATIENT AUTONOMY the preservation of life the protection of innocent third parties the prevention of suicide the maintenance of the ethical integrity of the medical profession and allied health care workers

12. PRESERVATION OF LIFE When we balance the State’s interest in prolonging a patient’s life against the rights of the patient to reject such prolongation, we must recognize that the State’s interest in life encompasses a broader interest than mere corporeal existence. In certain, thankfully rare, circumstances the burden of maintaining the corporeal existence degrades the very humanity it was meant to serve. (Brophy v. New England Sinai Hospital)

13. PROTECTION OF INNOCENT THIRD PARTIES Court allowed a mother to forgo blood transfusions that would save her life “ We must not assume from her choice that this mother was not considering the best interests of her children. As a parent however, she must consider the example she sets for her children, how to teach them to follow what she believes is God’s law if she herself does not. The choice for her cannot be an easy one, but it is hers to make. It is not for this Court to judge the reasonableness or validity of her beliefs...the law must protect her right to make that choice.”

14. A CHILD’S RIGHT TO REFUSE MEDICAL TREATMENT Courts routinely do intervene to require treatment for children whose parents deny consent for life saving medical intervention for religious reasons. Courts use the following analysis: determine whether any reasonable parent might withhold consent if one might, the court will defer to the wishes of the parent if no reasonable parent would refuse consent the court will order treatment

15. STATE INTEREST IN THE PREVENTION OF SUICIDE Most courts consider the motives of patients in refusing unwanted medical treatment as a way to ameliorate physical pain and suffering and not an intent to commit suicide. Most states have now removed their criminal sanctions for suicide although penalties remain for aiding and abetting suicide.

16. PRESERVING THE INTEGRITY OF THE MEDICAL PROFESSION “ Even if doctors were exhorted to attempt to cure or sustain their patients under all circumstances, that moral and professional imperative, at least in cases of patients who are competent, presumably would not require doctors to go beyond advising the patient of the risks of foregoing treatment and urging the patient to accept the medical intervention. If the patient rejected the doctors advice, the onus of that decision would rest on the patient, not the doctor. Indeed, if the patient’s right to informed consent is to have any meaning at all, it must be accorded respect even when it conflicts with the advice of the doctor or the values of the medical profession as a whole.”

17. PATIENT SELF-DETERMINATION ACT Provide all adult patient/residents with written information about their rights under state law to make healthcare decisions Maintain written policies and procedures regarding patient’s right to make medical decisions Document in the patient’s medical record whether he/she has an advance directive Ensure compliance with advance directives, consistent with state law Provide staff and community education on advance directives

18. Provides a mechanism for surrogates to make medical decisions on behalf of a patient incapable of making his/her own decisions Provides a suggested format for a living will and medical power of attorney Provides that physicians obtain informed consent Provides a mechanism for resolving conflict between patient/physician wishes VIRGINIA HEALTH CARE DECISIONS ACT

19. “Terminal condition” means a condition caused by injury, disease or illness from which, to a reasonable degree of medical probability a patient cannot recover and (1) the patient’s death is imminent or (2) the patient is in a PVS TERMINAL CONDITION

20. “ Persistent vegetative state” means a condition caused by injury, disease or illness in which a patient has suffered a loss of consciousness, with no behavioral evidence of self-awareness or awareness of surroundings in a learned manner, other than reflex activity of muscles and nerves for low level conditioned response, and from which, to a reasonable degree of medical probability, there can be no recovery PERSISTENT VEGETATIVE STATE

21. “ Incapable of making an informed decision” means the inability of an adult patient, because of mental illness, mental retardation, or any other mental or physical disorder which precludes communication or impairs judgment and which has been diagnosed and certified in writing by his attending physician and a second physician or licensed clinical psychologist after personal examination of such patient, to make an informed decision about providing, withholding or withdrawing a specific medical treatment or course of treatment because he is unable to understand the nature, extent or probable consequences of the proposed medical decision, or to make a rational evaluation of the risks and benefits of alternatives to that decision. For purpose of this article, persons who are deaf, dyspasic or have other communication disorders, who are otherwise mentally competent and able to communicate by means other than speech, shall not be considered incapable of making an informed decision. INCAPABLE OF MAKING AN INFORMED DECISION

22. SURROGATE DECISION MAKING Person specified in living will a guardian or committee the spouse an adult child a parent an adult brother or sister any other blood relative

23. WHEN FAMILY MEMBERS DISAGREE If two or more of the persons listed in the same class…with equal decision-making priority inform the attending physician that they disagree as to a particular treatment decision, the attending physician may rely on the authorization of a majority of the reasonably available members of that class

24. SURROGATE DUTIES Must determine religious beliefs and basic values of patient Must inform patient that someone else is making the decision Must base decision on patients' values and beliefs if known If not known, on the patient’s best interest Must make a good faith effort to ascertain risks, benefits, alternatives to treatment

25. DUTY TO TRANSFER PATIENT 54.1-2987 Va law requires that “attending physician who refuses to comply with advance directive or the treatment decision of person shall make a reasonable effort to transfer the patient to another physician”. Physician shall also attempt to transfer patient demanding treatment that is medically or ethically inappropriate.

26. Medically unnecessary treatment not required...Nothing in this article shall be construed to require a physician to prescribe or render medical treatment to a patient that the physician determines to be medically or ethically inappropriate. However, in such a case, if the physician’s determination is contrary to the terms of an advance directive of a qualified patient or the treatment decision of a surrogate, the physician shall make a reasonable effort to transfer the patient to another physician. MEDICALLY UNNECESSARY TREATMENT

27. LIFE-PROLONGING PROCEDURES “ Life prolonging procedure: means any medical procedure, treatment or intervention which (1) utilizes mechanical or other artificial means to sustain, restore or supplant a spontaneous vital function, or is otherwise of such a nature as to afford a patient no reasonable expectation of recovery from a terminal condition (2) when applied to a patient in a terminal condition, would serve only to prolong the dying process. The term includes artificially administered hydration and nutrition.

28. PAIN MANAGEMENT Nothing in this act shall prohibit the administration of medication or the performance of any medical procedure deemed necessary to provide comfort care or to alleviate pain, including the administration of excess dosages of pain relieving medications

29. ETHICAL DILEMMAS & ADVANCE DIRECTIVES Federal law provides for an “inopportune” time to approach the subject Language in most forms using words “withhold” & “withdraw” foster a sense of abandonment that patients and physicians should not wish to promulgate Forms are legal documents rather than clinical protocols Forms focus on treatment modalities rather than treatment plan

30. LEGAL DILEMMAS & ADVANCE DIRECTIVES State laws vary Forms mislead public about its rights to make medical decisions Forms are ambiguous Forms circumvent informed consent process Difficult to understand causing a disportional impact on minority people Surrogates do not always represent wishes of patient

31. THE FUTURE Reform the laws Change medical education Reform physician payments strengthen informed consent process Develop values histories Emphasize treatment plans over treatment modalities

32. The Naturalness of Dying The medicalization of dying is a pernicious trend that runs counter to several powerful societal changes and results in wasteful and bad medical care. It deprives the dying of their autonomy, leading to questions such as “Whose death is this?”- questions that will be asked with more vigor as the generation that grew up in a culture of narcissism reaches seniority .