PATIENTS' RIGHTS:

A 100- YEAR JOURNEY TOWARD AUTONOMY IN

HEALTH CARE DECISION MAKING

 
RUTHMARIE SHEA

 

NEISWANGER INSTITUTE FOR BIOETHICS AND HEALTH CARE POLICY

STRITCH SCHOOL OF MEDICINE

LOYOLA UNIVERSITY CHICAGO

 

© 2006

 

 Abstract:  A review of the legal literature supports the finding that federal and state courts throughout the country have been following a consistent pattern in recognizing individual rights of self-determination in health care decision making for almost 100 years. The right to self-determination in the medical context derives from several sources, the most predominant being the autonomy interest that is generally believed to inhere in all competent persons. Mental incompetence is not an uncommon event, however, and can be anticipated to occur with illness, degenerative changes thought to be associated with aging, and with the process of active dying. Between life and death a period of decisional incapacity is foreseeable, something for which a prudent person might reasonably plan. It is during this period of time, when the person is no longer in full possession of his or her decision-making capacity that the law seeks to respect the former autonomy of the patient. Mechanisms for respecting patients' desires have been set in place by every state in the union. Observational data suggests, however, that only 9% to 20% of the population employs the methods necessary to insure that their health care decisions will be carried out at life's end. It is speculated that advance healthcare decision making mechanisms are poorly understood by the public, and avoided out of fear of the unknown. Increased understanding of patients' rights, by both health care providers and health care recipients, may result in greater utilization of advance health care planning devices. This article explores the development of judicial recognition of existing rights of competent individuals to make health care choices while competent and incompetent. 

 

 1. Competent Patients Have a Right to Autonomy in Healthcare Decision-making

 

Universal respect for the decision- making rights of patients is a relatively new development in the history of medicine. Traditional codes of medical ethics never recognized an obligation on the part of the physician to inform patients of their condition or prognosis. (1) Physicians were taught to spare their patients' unnecessary fear, to instill hope in them, and to make their medical decisions for them. (1) This medical model, now disfavored, is referred to as Paternalism. (1)

 

Since the time of Hippocrates the physician-patient relationship was an inequality. The physician was the superior, learned professional and the patient was the hapless, uninformed inferior. Today the relationship has evolved into a mélange a trois, comprised of: physician-patient-attorney. The new medical model more closely approximates equality. Patients themselves created the tripartite team approach. Patients evidenced their desire for a greater role in the medical decision making process by initiating lawsuits against their physicians. The law of torts was the initial vehicle through which these causes of action were brought. One commentator has observed,"Tort law has probably had a greater impact on doctor-patient relations in this country than virtually any other branch of the law." (2) It might also be observed that law has had a greater impact on the practice of medicine in the last century than has science.

 

Oddly enough, the classic intentional tort of battery was the foreparent (3) of modern day patient autonomy. Actions in tort brought about judicial recognition that patients are people with the right of self-determination. Self-determination, or autonomy as it is also known, is best preserved in circumstances where patients are fully informed of the facts and circumstances of their case, and are thereby enabled to come to a reasoned decision regarding the care they want to receive. 

 

2. All Patients' Have a Right to be Free From Assault and Battery

 

The practice of medicine necessarily entails significant touching of the body of another. Battery is an unconsented touching of another. Therefore, it is prudent for a health care provider to obtain consent in advance of any touching of any patient. "Consent" is not a global concept.  A patient who has consented to be touched for one purpose may, nevertheless be battered by a physician, or other health care provider, when touched in a manner or for a purpose for which no consent has been obtained.  This principle was first recognized in American case law in 1914, in Schloendorff v New York Hospital. (4) Prior to Schloendorff, hospitals were immune from lawsuits because of the Charitable Immunity Doctrine.  Injured plaintiffs were barred from suing hospitals for negligence, at that time, because hospitals were legitimately charitable institutions. Unlike today, their financial resources were limited and largely derived from charitable contributions of the public. Under the circumstances, draining hospitals of their limited financial resources by defending negligence lawsuits, was thought to be against public policy.  Those patients who took advantage of the charity were deemed to have waived any cause of action against the hospital for negligence. Schloendorff was a case of first impression. The court, outraged by the abuse of power that absolute immunity created, sua sponte, recharacterized the cause of action from one in negligence, to one in trespass—for which there was no charitable immunity defense. Trespass to the body was judicially construed as assault, and later battery.

 

The egregious facts of the case may well have contributed to the courts' re-characterization of the cause of action and resultant remedy. This patient had consented to one procedure—an exam, but was subjected involuntarily to another—surgery, to which she had not consented. The Court intervened, and restated the complaint for Plaintiff, the "wrong complained of is not merely negligence. It is trespass," (4) the court said.

Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient's consent, commits an assault, for which he is liable in damages". (4)

 

  Trespass to body, the functional equivalent of assault  (5) and battery were utilized to heighten the adverse consequences for one who undertook an action upon a patient's body without the patient's prior consent to the particular action undertaken. This unconsented touching can happen in an operating room as well as in an exam room.

 

It has been asserted that battery, in the medical context, takes place when something happens to the patient other than what the patient expected. (2) This may be a bit of an oversimplification. A more empirical description might be that:  battery is what takes place when a patient is touched in a manner materially different from what the patient anticipated, or in a manner that was not disclosed at all. (6)

 

4. All Competent Patients' Have a Right to Receive Information Adequate

To Give Fully Informed Consent

 

In a classic case, Canterbury v. Spence,  (7) a post-op laminectomy patient accidentally fell out of bed thereby causing himself permanent paralysis. Although the surgeon who performed the laminectomy was in no way responsible for the fall, it was determined that the surgeon never mentioned the possibility of post-surgical paralysis if a fall were to occur.  The Court held that the patient's consent to surgery was not fully informed, and hence, was inadequate. (7) The novelty in Canterbury is that the essential causal relationship need not be found between the surgery and the injury, as had always been required prior to this case. What was new, in 1972, was that causality could be found between the "uninformed" consent and the ultimate harm-- even though the harm was not occasioned by the surgery. (7)

 

 Informed consent is not easily capable of precise definition. (7a) It must include all the relevant facts requiring disclosure. (8) The list of relevant facts, requiring disclosure, has been growing since Canterbury v Spence  (7) The physician's duty to disclose continues to expand as subsequent case law develops. One thing, however, is certain. To give a consent that is fully informed, one must be mentally competent to understand what it is one is consenting to or refusing to consent to. (8)

 

Informed consent should include disclosure of the following: diagnoses, nature and purpose of the proposed intervention, risks and outcomes associated with the intervention and their likelihood of occurring. (8) The probabilities of outcome should be expressed in terms of national statistics, (8) as well as in terms of the physician's own performance data. Specific performance data of the physician seeking consent includes: disclosure of the physician's own rate of success, error and complications with the intervention. (8) The physician's level of experience is to be disclosed to the patient, revealing the number of times the physician has performed the precise procedure under consideration. (8) Case law indicates that reliance upon similar experiences is misbegotten and the physician would do well to disclose the precise nature of the prior medical experience to which he or she refers. Not so, however in Michigan. Recently, the Court of Appeals in the State of Michigan has held that disclosure of the physician's failure rate with a procedure is immaterial to a patient's ability to give informed consent. ( 9a) In this rather awkward two to one decision, the appellate panel has decided that a physician's numerical success rate is statistically unrelated to future medical malpractice. This entirely evades the more compelling standard that it is the patient's right to decide whether he or she is willing to take that risk. The Michigan court has decided, as a matter of law, that success and failure rates are not necessary to be communicated to the patient in order for him or her to give an informed consent. This state of the law is final, in Michigan, until such time as a higher court overrules it.

 

Recently, the American Medical Association has required additional disclosures to patients when financial incentives are available to physicians to under-treat those patients covered by managed care contracts. (10)  This inexhaustive compilation of required disclosures illustrates the heightened involvement of the legal system in setting the standard of care for the medical community. Public policy, expressed through courts and legislatures, with the exception of Michigan stated above, strongly supports an environment that fosters obtaining fully informed consent from patients who are autonomous in their health care decision-making.

 

 A Patient Who Is Competent to Give Consent is Competent to Withhold Consent

In 1976 the Supreme Court of New Jersey held that a right to refuse to consent also existed at law.  This follows logically from the notion that since a patient has the right to give consent a patient also has the right to withhold consent and thereby to refuse treatment: In Re Quinlan, (11) and Bouvia v Superior Court (12).  The Michigan Court of Appeals held, similarly, in Rosebush v Oakland County Prosecutor  (13) that " the logical corollary of the doctrine of informed consent is that the patient generally possesses the right not to consent, that is the right to refuse medical treatment and procedures. (13)

 

 Competent persons may make their own health care decisions whether they are or appear to be reasonable, wise, or conventional. (14) The fundamental right to privacy, and respect for personal autonomy require that, in most cases, the decisions of mentally competent patients are binding. (14) The courts, seeking to preserve the autonomy of mentally competent persons, insure free choice, not necessarily wise choice. (14)

 

This is not the case, however, with incompetent patients, because by definition a mentally incompetent patient cannot be autonomous, therefore, there is no autonomy for the court to preserve. (13) Mental incompetence is state of decisional incapacity. It may be permanent, or temporary.  Surely one is incompetent to make informed decisions while anesthetized, while comatose, or while under the influence of sedation. Severe pain, fear, duress, or other factors may influence a person's capacity to make decisions. Illness, especially the profound conditions associated with active dying can give way to a sudden decisional incapacity, in a recently competent person.

 

Significant advances in the technology of medicine in recent years, have created the ability to bring the clinically dead back to life. Death can now be postponed by the application of technological interventions. One problem frequently associated with this putative progress is that the "life" preserved bears little resemblance to the life formerly led.  Many individuals have come to the conclusion that they do not want their lives artificially prolonged, attached to tubes and devices which merely forestall death when they have no reasonable hope of recovery. When it is their time, they want to go. American culture, as a whole, however, still touts the ideal of "fighting" death; as if death is not inevitable.

 

These competing attitudes give rise to strongly divergent points of view about what constitutes an appropriate response to illness, suffering, and death. Further compounding the problem, is the potentially adversarial position between the hospital and its caregivers and the deceased persons survivors, who are frequently termed "Plaintiffs".

 

There is a potential conflict of interest between what is beneficial to the patient, and what is in the best interests of the health care industry. Exhaustive testing, painful procedures, intensive medical and nursing care render results with which to document diagnosis, prognosis and treatment.  They do not ease the transition of the patient into death. As a practical matter, the need to practice defensive medicine, the need of hospitals for the lucrative income testing provides, the need to train medical students and residents may all factor into the caliber and intensity of end- of -life treatment in the hospital setting. It is not all about what is in the best interests of the patient. Frequently it's about documenting the chart for the jury.

 

The American Medical Association's Code of Ethics attempts to limit useless procedures and unnecessary treatment being imposed upon dying people. The Code imposes an ethical obligation upon physicians to refrain from interventions that prolong life when the interventions become futile. (15) The Ethical Code is not enforceable at law, however, and one physician's interpretation of futility may not coincide with what the patient would consider futile, if he were capable of considering at all. The Code provides that a physician is not ethically obligated to deliver care that will not have a reasonable chance of benefiting the patient. (16) The code also prohibits physician-assisted suicide. (17) The withholding or withdrawing of life-sustaining medical treatment is generally left to the discretion of the patient, or the patient's surrogate decision maker when necessary. (18)

 

 Our legal system has historically taken a dim view of physicians who directly cause the death of a patient. Disconnecting respirators may lead to criminal charges under some circumstances, but not others. Legal clarity was needed to insulate physicians from potential criminal liability, and at the same time to respect the legitimate desires of autonomous patients. The state legislatures responded to this need by passing laws aimed at assuring that the patient's end- of- life medical care would be in keeping with their prior expressed wishes, while providing protection for physicians who follow the patient's legal directions.

 

Patients Have a Right to Advance Directives for Health Care

" In the most elementary sense, an advance directive is a declaration (oral or written) by a person with decisional capacity of the types of medical treatment which they would or would not wish to receive during some future period of decisional incapacity." (19) Persons are deemed incompetent, incapacitated, or lacking treatment decision- making capacity when they are unable to care for themselves or for their property. (20) All fifty states have some form of advance directive statute. (20) Surveys show that only between 9% and 20%, of Americans have executed any advance directives. (20)

In the absence of advance directives, health care personnel have no choice but to treat aggressively until treatment becomes medically futile. This may create fear, pain, hardship, and even false hope for the patient. With advance directives the right to demand or refuse lifesaving treatment is not lost because of the incompetence of the patient. Rather, the surrogate they previously appointed will exercise their rights. The surrogate decision maker should be person familiar with the patient's beliefs, value system, and desires. Ideally, medical decision- making should occur in the clinical setting, and need not be brought to the Court unless there is disagreement or other substantial reason. (13)

An Advance Directive may be a written statement, comparable to a Will that states exactly what the patient wants to be done and not done when incapacitated. It may also be a written appointment of a surrogate decision maker, giving a specified person Durable Power of Attorney for Health Care decision-making. There are two separate, mutually exclusive, standards for surrogate decision-making. If the surrogate knows the patients wishes, based upon evidence the patient expressed while competent, the surrogate must substitute her judgment for that of the patient and do that which the patient would have chosen had she been able to. This is known as the Substituted Judgment Standard. (21) If the surrogate does not know the wishes of the patient, because the patient never expressed them or never was competent, the appropriate standard is the Best Interest Standard. Under this standard, the surrogate chooses what appears to be, given all the attendant circumstances, in the best interests of the patient. (21)

Living Wills are falling into disfavor. Empirically, these have been too broadly stated to be of great benefit. One cannot foresee every possible complication of dying, let alone the potential medical interventions available. (20) Living Wills can be subject to conflicting interpretations. (20)

The Durable Power of Attorney for Health Care appears to be more flexible. This document is the product of statutory law, (20) and details the patient's desires in general, while at the same time appointing a surrogate decision maker, or Patient Advocate, to respond to the situation-specific circumstances which occur during incapacity.  The designated Patient Advocate is someone who knows and understands the patient's desires and value system. Generally, copies are given to all treating physicians and are brought to the hospital at the time of admission. (20) This approach encompasses the best points of the Living Will, by outlining with some precision what care is wanted and what is not, but covers the gap of unanticipated situations by providing a Patient Advocate to speak, on behalf of the patient, under the Substituted Judgment Standard. (21)

Advance Directives do have drawbacks. They are somewhat complicated to construct and to interpret. They are poorly understood by the public and too easily revocable. There is no clear mechanism in place to determine when incompetence triggers the advocacy role of the surrogate or the implementation of the Living Will. The applicability of Advance Directives in the homecare setting is unclear. Resort to the courts may still be necessary for a legal finding of mental incapacity. Finally, less than 20% of the population is using Advance Directives, leaving the autonomous decision-making rights of 80% of Americans unprotected. Increased education of the public and health care providers will be necessary to protect the legal interests of all.

                                     REFERENCES

 

1.         Mappes TA, Degrazia D. Biomedical ethics. 5th ed. Boston; McGraw
            Hill; 2001.

2.         Menikoff J. Law and bioethics: an introduction. Washington, D.C.; Georgetown University Press; 2001.

3.         Gender neutral language thought to be coined by the author.

4.         Schloendorff v. The Society of the New York Hospital, 105 N.E.
  (1914).

5.         By definition, however, the tort of assault cannot be perpetrated upon an anesthetized person, as there can be no apprehension while anesthetized.

6.         Common examples of this type of non-consented touching include circumstances in which patients are examined in a manner they never anticipated, and therefore never consented to: a minor male assents to a "sports physical" although he does not know, and is not informed that this includes a rectal exam of the prostate, and a manual exam of the testicles; a female consents to a PAP smear anticipating a vaginal exam only and is subjected to an unannounced rectal exam. In situations like these there is no prior disclosure to the patient of the extent of the physical invasion of the examination, and therefore no opportunity for the patient to give or withhold informed consent. These batteries continue to occur in health care settings due to health care providers' longstanding misunderstanding of the process of obtaining informed consent.

7.         Canterbury v. Spence, 464 F.2d 772, 150 U.S. App. D.C. 263 (1972), cert denied.

7a.       Numerous state courts have defined or attempted to define the amount of consent that is necessary under the circumstances. There is no universally accepted standard and this poses a significant hazard for health care providers. One potentially troubling aspect of Canterbury v Spence, and its progeny, is that courts frequently require disclosure of the dangers "inherent in and potentially involved with" the treatment or procedure.  It is at least conceivable that scientific research may eventually reveal all dangers that inhere in a procedure or activity, leading to a finite number of dangers. It is logically intuitive, however, that every danger "potentially involved with" a procedure could never be identified or quantified. Dangers potentially involved with any activity or state of being are infinite, and therefore incapable of calculation, expression, or disclosure. Exposure to medical malpractice liability, under this broad, vague, "involved with" standard, therefore, may be infinite as well.  

8.         Parsi K. Bioethics and the law. Informed consent and research [PowerPoint presentation and video lecture] Neiswanger Institute for Bioethics and Health Policy, Stritch School of Medicine, Loyola University Chicago; 2002.

9.         Johnson v Kokemore, 545 NW2d 495 (1996).

9a.       Wlosinski v Cohn, Court of Appeals, State of Michigan December 20, 2005, LC 2001-033241-NH, on Appeal from Oakland County Circuit Court. The Trial Court's decision was vacated and remanded for new trial. According to the court, " [A] physician has no duty to disclose to a patient the physician's success rates for a particular medical procedure". The court went on to hold that "Dr. Cohn's success rate could not, as a matter of law, taint the patient's consent."  Among other errors, the Court mistakenly believed that only raw data was available to it and the jury, which would preclude any stratification of risk in previously unsuccessful surgeries performed by Dr. Cohn.

10.       AMA Code of Ethics Opinions 2.07, 8.13.

11.       In Re Quinlan, Sup Ct New Jersey, 355 A.2d 647 (N.J. 1976).

12.       Bouvia v Superior Court, 225 Cal Rrtr, 297 ( Cal Ct App 1986).

13.       Rosebush v Oakland County Prosecutor, 195 Mich. App. 675, 491 N.W.2d  633 (1992).

14.       Lane v Candura, 6 Mass App 377; 376 NE2d 1232 (1978).

15.       American Medical Association, Ethics Opinion E-2.037

16.       American Medical Association, Ethics Opinion E-2.035

17.       American Medical Association, Ethics Opinion E-2.211

18.       American Medical Association, Ethics Opinion E-2.20

19.       Rich BA, Strange bedfellows. New York: Plenum Publishers; 2001.

20.       Fraleigh AS, An alternative to guardianship: should Michigan statutorily allow acute-care hospitals to make medical treatment decisions for incompetent patients who have neither identifiable surrogates nor advance directives? 76 U. Det. Mercy L Rev.1079, Summer 1999.

 

             Ruthmarie Shea Atallah R.N., B.S., B.S.N., M.A., J.D.
             Post Graduate Certificate Health Care Ethics & Public Policy,
             Loyola University 2006 Nurse-Attorney,
             Health Care Ethics Consultant