Lawrence P. Ulrich, Ph.D.

From Manuscript;
The Patient Self-Determination Act: Meeting the Challenges in Patient Care
© 1998 Lawrence P. Ulrich, Ph.D.

    The Patient Self-Determination Act explicitly recognizes the right of competent adults to refuse treatment. The law promotes this right by not only acknowledging it but also by insuring that patients know about the right. Until recent years it has generally been assumed by caregivers that patients knew about their right in this regard. However, because of the kind of language used in talking with patients, for example, only offering different treatments, and the limited scope of conversations with them, patients often presumed that they had to select some sort of treatment. All too often they did not infer that no treatment for a particular condition was a legitimate therapeutic approach. With the Patient Self-Determination Act this erroneous presumption on the part of patients should no longer occur.

    The right to refuse treatment is based on the right of thoroughgoing self-determination which lies at the heart of democratic institutions.(1) It is a political right which has been accepted in healthcare as the right of individuals to be free from any kind of touching to which they do not give consent.(2) It has also been interpreted by some courts as grounded in a fundamental right to privacy guaranteed by the U.S. Constitution in its 1st, 4th, 5th, 9th, and 14th amendments. We saw how this right was applied in chapter 2 in Quinlan,(3)Bartling,(4) and Brophy.(5) In Cruzan we saw how the right to refuse treatment has been interpreted as a less rigid constitutional right, namely, as a liberty right, based only on the 14th amendment.(6) The U.S. Supreme Court has also reaffirmed this right in its decision on physician-assisted suicide: "Everyone, regardless of physical condition, is entitled,if competent, to refuse unwanted lifesaving treatment."(7)

    To have a right means that, if someone has a right, then another individual or organization has a duty to perform some action to help that individual obtain what the right guarantees or to refrain from doing something so that the person can enjoy what the right guarantees.(8) The former is called a positive right and the latter is called a negative right.(9) For example, if an individual has a right to Medicare reimbursement for a healthcare service, then the government has the duty to pay for the service. This is called a positive right because it requires an action on the part of the one holding the duty.(10) On the other hand, If an individual has a right to the integrity of her body in such a way that she cannot be touched without consenting to it, then caregivers have the obligation to refrain from touching her without her consent. This is called a negative right because it imposes on others the duty not to perform an action.(11)

    While the preponderance of the Patient Self-Determination Act confers no new substantive rights on patients, it does confer one significant new positive right for patients. It asserts that patients have the right to know that they can consent to or refuse treatment, what the hospital policies are regarding limiting treatments, and the stipulations of local state laws regarding advance directives. Therefore, it imposes on healthcare institutions the obligation to engage in an action, namely, to inform patients about their right to refuse treatment, etc. The Patient Self-Determination Act itself does not confer upon patients the right to refuse treatment nor the right to sign or draft and advance directive. They already have those rights (conferred by states in the case of advance directives).

    Having a right sets a minimal standard for behavior in our society. However, we often do much for individuals beyond the power of their having a right simply because we desire to promote their welfare. And so it is with the Patient Self-Determination Act. In chapter 5 it was noted that healthcare institutions need not go beyond merely notifying patients of their rights. However, the mission dimension of the institution may call it to further actions such as assisting patients in understanding their rights and helping while they go through the decision-making process as they exercise their rights. If institutions decide not to assist patients in making decisions relative to the rights granted by the Patient Self-Determination Act they are still fulfilling their basic obligations under the law. There is still a question, however, of how seriously the institution wishes to promote patient dignity because mere notification may do little to promote that dignity.

    It could surely seem paradoxical to many patients that they will come to a healthcare facility seeking treatment for a disease or injury and one of the first things they hear is that they have the right to refuse treatment. The notification may very well cause wonderment, dismay, or anxiety. Perhaps the first question the interviewer will encounter will be something like: "Why would I want to refuse treatment when I came here to get well?" This would be an opportune moment to educate both patients and their family members not only for the immediate hospital stay but for future stays as well. The limits of healthcare interventions are not an inappropriate topic for patients to consider. While the Patient Self-Determination Act does not require such a discussion, nonetheless it would certainly aid in accomplishing the intent of the law, namely, to help patients become more reflective consumers of healthcare.(12)

    One of the reasons for refusing treatment might be that a patient is terminally ill and a particular treatment will not succeed in its attempt to cure. A terminal illness or condition, resulting from disease or injury, is one which is irreversible and causes progressive deterioration. The result is that the patient will die from the condition and even the use of life-sustaining treatments will only postpone the moment of death.

    Life-sustaining treatments, then, are those which, within the context of a terminal illness or condition, only prolong the dying process. They frequently provide little, if any, comfort for the patient or improvement in her quality of life. Thus, some patients, wishing to practice the virtues of acceptance and detachment, may refuse life-sustaining treatments because prolonging the dying process does not fit into their goals for living and dying. On the other hand, some patients may wish life-sustaining treatment because it fits into their values and goals to delay the process of dying. Obviously, this is an intensely personal choice.(13) But it can only be a choice if the patient knows that she does have the right to refuse treatment.

    One of the key questions, then, that patients must ask themselves when approaching the matter of exercising their right to refuse treatment is: "What benefit is the treatment for me?" Benefits come in a variety of forms. Complete recovery from a disease is one form of benefit as are the remission of a disease process or the improvement of one's quality of life. Returning an already impaired patient to a previous level of functioning or to gain for her a minimally decent quality of life are other benefits. Helping a patient to regain consciousness so that she will be able to interact with her environment and those who care for her is a particular benefit to be considered. To maintain a permanently unconscious patient in a minimal biological state so that she remains a merely metabolizing body may be a benefit for some but its beneficial character is highly questioned by many.(14)

    Upon consideration of those possible benefits which a patient might enjoy, each patient must look at her particular condition and decide whether the treatments being considered have a decent probability of achieving a particular benefit. If they do not, then refusing treatment may be the appropriate option. Once again the patient's value context becomes important in making this decision. For a patient may very well decide that a particular quality of life is not minimally decent for her or that the continuance of a merely biological existence does not fit into her assessment of her finitude and the practice of her virtues within that context.(15)

    There is a variation to refusing treatment on the basis of its yielding no benefit. This involves refusing treatment based upon the weighing of the benefits of the treatment against the burdens which the treatment imposes upon the patient. In this approach, treatment can be refused even if it provides benefits. The deciding factor is whether the treatment also imposes burdens upon the patient which the patient finds too difficult to bear. If the patient finds this to be the case then the refusal of the treatment is considered morally appropriate. For example it might be perfectly appropriate to refuse CPR even though it might restore the heartbeat if the resulting prospect is languishing for two weeks in an intensive care unit with death at the end of that period. In this context it must always be remembered that patients can refuse treatments for any reason.(16) They can do so even on a whim. They do not need a "good" reason for doing so.(17) Therefore, caregivers and families cannot impose their criteria for a "good" reason on the patient. The patient's preference stands on its own merit. This weighing of benefits and burdens is supported by considerations of both autonomy and beneficence.

    The weighing of benefits against burdens involves a whole cluster of considerations. Many of these considerations relate to their place in the patient's value context. Again, the third level of informed consent is shown to be central to good decision-making.(18) Patients will have to consider not only whether the proposed treatment will achieve its therapeutic goal, that is, is not futile, but also whether the goal is worth accomplishing and how the goals of the treatment will fit into the patient's lifestyle goals.

    A decent identification of the burdens of an intervention will also have to be estimated. It will be important to determine whether the burdens will be tolerable when compared to the benefits of the intervention. For example, patients select surgery because, in spite of the severe discomfort and disability which often accompanies surgery, the long term benefit makes the short term difficulties worth enduring. In some cases, however, the burdens may be considered so heavy as to minimize any benefit which might accompany the intervention. Thus, the patient will have to determine how the burdens fit into her lifestyle goals just as she determined how the benefits would fit.

    The patient with decisional capacity will be the morally appropriate person to do the weighing because it is the patient who will, in the last analysis, bear the full impact of the burden. When the patient is suffering from incapacity, then the patient's authorized surrogate is charged with the task. Weighing benefits against burdens is a very delicate process and one which requires as much clarity as possible regarding the values of the patient and the best interests of the patient as she determines them.

    In summary, the process of communicating with individuals so that they can share in the responsibility for healthcare decisions, particularly those which will result in treatment refusals, requires fidelity to the canons of informed consent. Patients must be given accurate information which includes an understanding of their rights, a realistic assessment of their conditions, and what they can expect from treatment interventions. The information must be given in language which they can understand. Before they come to a decision they should be given the opportunity to incorporate the information into the values which guide their lives. It is essential that individuals have a chance to explore their feelings as they are considering a decision and be supported in the decisions which they make.(19) Conversations about these important healthcare decisions should occur frequently so that individuals can monitor their situations and reconsider previous decisions in light of changes in their conditions or their additional experiences.

    The Patient Self-Determination Act uses the right to refuse treatment as its pivotal point. Information about all the other stipulations of the law revolve around this fundamental right. For this reason, if for no other, special attention must be paid to conversations which will be held with patients on this topic. The quality and extent of the conversations must be a matter of serious concern. Unfortunately, the emphasis in healthcare practice has focused on the more dramatic and tangible issue of advance directives. Effective programs need to be grounded in the underlying right to refuse treatment.

    Throughout this section we have seen the enormous complexity and gravity involved in decisions to refuse treatment. Such decisions cannot be made in a casual or automatic manner. They require extensive reflection which entails setting the information in the value context of the patient. Since patients are often inarticulate about their own value contexts and their applications, considerable assistance is often necessary for them to identify their values and place them into perspective. While not requiring this assistance, the spirit of the Patient Self-Determination Act encourages it. Patients who receive this aid will benefit greatly from the implementation of the law while others, left to their own devices, may be left to flounder in this most difficult of healthcare decisions.

1. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making health care decisions: the ethical and legal implications of informed consent in the patient-practitioner relationship. Washington, D.C.: US Government Printing Office, 1983, pages 44-47.

2. Schloendorff v. Society of New York Hospital. 211 N.Y. 125, 105 N.E. 92 (1914).

3. In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976).

4. Bartling v. Superior Court. 163 Cal.App.3d 186; 209 Cal.Rptr. 220 (1984).

5. Brophy v. New England Sinai Hospital, Inc. 398 Mass. 417, 497 N.E.2d 626 (1986).

6. Cruzan v. Director, Missouri Department of Health. 110 SCt. 2841 (1990).

7. Vacco v. Quill. 117 S.Ct. 2293 ad 5 (1997).

8. Hart HLA. Are there any natural rights? In Melden AI. Human rights. Belmont CA: Wadworth Publishing Co., 1970, pages 64-67.

9. Feinberg J. Social philosophy. Englewood Cliffs, NJ: Prentice-Hall, Inc., 1973, pages 59-60.

10. Minogue B. Bioethics: a committee approach. Boston, MA: Jones and Bartlett Publishers, 1996, page 112.

11. Ibid.

12. The interviewer will have to be well-trained in discussing the issues raised by the Patient Self-Determination Act. It would not be sufficient to simply assign the task to someone who has only clerical duties. Some healthcare training would be essential for productive conversations on these matters. (Cf. Oleson KJ et al. A quality improvement focus for patient rights: advance directives. J Nurs Care Qual 1994;8:52-67.)

13. This point has been underscored in the context of physician-assisted suicide by the Ninth Circuit Court of Appeals. (Cf. Compassion in Dying v. Washington. 79 F.3d 790 (9th Cir. 1996).) Cf. also Ethics Committee of the Society of Critical Care Medicine. Consensus statement of the society of critical care medicine's ethics committee regarding futile and other possibly inadvisable treatments. Crit Care Med 1997;25:887-891.

14. Council on Scientific Affairs and Council on Ethical and Judicial Affairs, AMA. Persistent vegetative state and the decision to withdraw or withhold life support. JAMA 1990;263:426-430. Most of the courts which have addressed the issue of life-sustaining treatments for patients in a persistent vegetative state have considered the continuance of life in such a state to be nonbeneficial. The only court to consider life in a persistent vegetative state to be a benefit to the patient has been the Supreme Court of Missouri in the case of Nancy Cruzan. (Cf. Cruzan, by Cruzan v. Harmon, 760 S.W.2d 408 (Mo. en banc 1988).)

15. In spite of attempts to "objectively" assess the quality of a patient's life, it still remains largely a subjective factor and one about which patients must continue to make personal decisions. (Cf. Konopad E et al. Quality of life measures before and one year after admission to an intensive care unit. Crit Care Med 1995;23:1653-1659.)

16. Davis NA. The right to refuse treatment. In Beauchamp TL. Intending death: the ethics of assisted suicide and euthanasia. Upper Saddle River, NJ: Prentice Hall, 1996, pages 109-130.

17. Note again the U.S. Supreme Court's statement: "Everyone, regardless of physical condition (italics mine), is entitled, if competent, to refuse unwanted lifesaving medical treatment." (Cf. Vacco v. Quill. 117 S.Ct. 2293 ad 5 (1997).)

18. Cf. above, chapter 6, section 3, page 20.

19. Ivey AE, Authier J. Microcounseling: innovations in interviewing, counseling, psychotherapy, and psychoeduction. 2nd edition. Springfield IL: Charles C. Thomas, 1978, pages 80-83.