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

    William Bartling was 70 years old when he entered Glendale Adventist Hospital in California in 1984. He entered the hospital for treatment of depression. At the time of his admission he was known to be suffering from emphysema and arteriosclerosis. At the time of his admission a routine physical examination revealed a tumor on his lung and a biopsy confirmed that it was malignant. The biopsy needle caused the lung to collapse and the emphysema prevented the lung from reinflating causing chronic respiratory failure. He was placed on a ventilator with a tracheotomy. In addition Mr. Bartling had an abdominal aneurysm. Although each of these conditions could individually be lethal, he was not diagnosed as terminally ill. Attempts to wean him from the ventilator were unsuccessful and he was considered to be ventilator dependent. His physicians admitted that, at best, he could only live for a year if he could be weaned from the ventilator.

    Initially Mr. Bartling attempted to remove the ventilator tubes but was unsuccessful. To prevent a successful attempt, he was placed in restraints so that the tubes could remain in place. Both Mr. Bartling and his wife asked the physicians to remove the ventilator but they refused.

    Mr. and Mrs. Bartling then filed a complaint against Glendale Adventist Hospital seeking damages for battery and the violation of Mr. Bartling's constitutional rights both state and federal. As a part of the complaint there was attached a living will executed by Mr. Bartling and his appointment of Mrs. Bartling as his attorney-in-fact in a Durable Power of Attorney for Healthcare. In the documents Mr. Bartling expressed a clear understanding of his healthcare condition, the distress he was in as a result of the continued ventilator support, the consequences (which could result in death) of the removal of the ventilator, and his unswerving desire to have the ventilator disconnected. His wife and daughter added documents which released the hospital and his physicians from all civil liability for whatever consequences might result from following his wishes. The hospital and his physicians remained steadfast in their refusal to disconnect the ventilator both because he was not considered terminally ill and because, so they contended, the religious traditions of the hospital required that life be preserved as long as the patient had cognition, even with such a poor quality and prognosis.

    The situation was complicated by the apparent vacillation of Mr. Bartling in his decisions. He said that he did not want to die but neither did he want to live on a ventilator. However, at times he seemed to be reconciled to his impending death. On the infrequent occasions when the tubes became accidentally disconnected he seemed to gesture to the nurses to reconnect them. Finally, there were reports by some of the physicians that Mr. Bartling had said that he did not want the ventilator disconnected.

    The trial court, in relying on Quinlan, ruled that only patients who are in a comatose, vegetative state or who are determined to be terminal could have ventilators disconnected.⁽²⁾ It ruled that those who are competent, and it acknowledged that Mr. Bartling was competent, cannot have their ventilators disconnected.

    The Appellate Court overturned the trial court's decision by relying on Cobbs v. Grant⁽³⁾ which took the position that adults of sound mind can determine whether to submit to medical treatments as a matter of exercising control over their own bodies. Citing other legal decisions and the recognized intent of California statutes and constitutional provisions,⁽⁴⁾ the Court concluded that the right to refuse treatment extends beyond the situations of persistent coma and terminal illness to include all patients who wish to make healthcare decisions and their authorized surrogates. The Court held that any medical intrusion into a patient's bodily integrity was the object of consent or refusal on the part of the patient.

    In addressing the expressed interest of the hospital in preserving life as part of its Christian orientation, the Court held that, if the right of the patient to self-determination is to have any meaning, it must be paramount if there is an apparent conflict between the goals of the institution and the goals of the patient. As a constitutionally grounded right, self-determination must maintain freedom of choice even if the consequences are life-threatening in spite of the religious beliefs of an institution.⁽⁵⁾

    With regard to the issue of suicide the Court, as in Quinlan, clearly stated that death resulting from the removal of a ventilator is not suicide but rather the result of the natural course of the disease. Furthermore, the Court expressed the opinion that the State's interest in preventing suicide only extends to "irrational" suicide. The refusal of treatment in cases such as Mr. Bartling's would not only not be suicide, it would not be irrational.

    Finally, the court judged that neither the physicians nor the hospital would be liable for Mr. Bartling's death if they followed his wishes. Since Mr. Bartling was directing the course of his care, he assumed the responsibility for its outcome.

    The Bartling Court enlarged the scope of considerations beyond those which were designated by Quinlan. It made it clear that any patient can refuse treatment whether in a terminal condition or not. But the situation of Mr. Bartling underscored the importance of clear thinking when addressing the issue of terminal illness. In the case of Mr. Bartling one might note that proximity in time to death may not be the best way to think about terminal illness. The severity, degeneration, and irreversibility of the disease process may be much more, or, at least, equally, telling factors. Furthermore, the Court seemed to acknowledge the importance of quality of life assessments in making a decision to terminate healthcare interventions. Even if Mr. Bartling would not be considered terminal, he concluded that his quality of life was so poor that it was not worth continuing, and that the continuance or introduction of any healthcare interventions would place his quality of life in further jeopardy.

    The Court underscored the importance of giving patients the benefit of the doubt when assessing their decisional capacity. In this it seems to be following the suggestion of the President's Commission which, two years earlier, set the standard of presuming that patients possessed decisional capacity unless it could be clearly shown that they were lacking it.⁽⁶⁾ The Court gives further emphasis to decisional capacity by asserting the right of competent patients to refuse healthcare treatment thereby dispelling the rather popular myth at the time that treatments could only be withdrawn for patients who were comatose with no chance of recovery and/or terminal. Bartling makes it clear that competent, non-terminal patients have the right to refuse treatments. This power extends to their refusals for any reason including those based upon quality of life issues.

    This decision also illustrates the role which advance directives can play in treatment refusals. Mr. Bartling developed one kind of advance directive. He specified the reason for the decisions which he was making in his advance directive and specified the direction which he wanted the treatment to take. He gave specific directions to his attorney-in-fact so that no one could question whether she were adequately representing him in the substituted judgment process. In taking this approach, Mr. Bartling was not only setting the course of his treatment but also giving credibility to his decisions. At the same time he was validating his decisional capacity. His approach to his treatment decisions influenced the Court in determining that he did possess decisional capacity and that his approach to his treatment was rational.

    The hospital's Christian commitment to preserving life was singled out for special attention by the Court. Institutional concerns about the place of patients' refusals of treatment have emerged periodically in court cases about foregoing life-sustaining treatments.⁽⁷⁾ The Bartling decision places patient self-determination above institutional beliefs. The Patient Self-Determination Act responds to this concern by requiring hospitals to state their policies on such matters "up front" at the time of admission. This presumably will give patients the opportunity to seek assistance in other institutions where the policies are more harmonious with the patients' own beliefs and wishes.

    But we may very well be seeing a collision course being set in this matter because of the secular sentiments protecting self-determination which were present in this decision. The matter comes down to whether the liberty of an individual overrides the religious commitments of an institution or vice versa. Bartling would consider that the former must prevail. However, those who sponsor institutions with particular religious commitments consider their mission commitments to supersede the personal liberty of patients, particularly because of the "conscience clauses" which appear in most advance directive legislation.⁽⁸⁾ It would seem that Cruzan in 1990 has laid this conflict to rest by grounding the right to refuse treatment in the constitutional liberty interest, thereby making a patient's liberty right paramount in our society. However, the specific issue of religious institutions' mission commitments and patients' liberty rights has not been addressed by the U.S. Supreme Court. Until that time the legal ambiguity which was described earlier prevails.

    An approach similar to Quinlan was taken to two final and related issues in Bartling. The Court stated that in such cases of conflict between patients and caregivers or institutions no prior judicial approval was necessary to resolve such conflicts. It is perfectly appropriate to resolve them at the patient's beside among the parties who are involved in the patient's care including the patient. It furthermore stated that physicians could not be held liable for homicide when they followed the wishes of the patient in these matters. The decision on both of these issues once again points to the role of the patients taking responsibility for the direction of their care. The locus of the decision should be with the patient and not displaced into a courtroom. The patient, by active participation in the decisional process, assumes responsibility for the outcome of the decision. Liability does not extend to others when they act as instruments of the patient.

2. Superior Court of Los Angeles County, No.C500735, Lawrence C. Washington, Judge.

3. Cobbs v. Grant. 8 Cal.3d 229, 242 [104 Cal.Rpts. 505, 502 P.2d 1] (1972).

4. Notably Lane v. Candura. 6 Mass.App. 377 [376 N.E.2d 1232, 93 A.L.R.3d 59] (1978) and Barber v. Superior Court. 147 Cal.App.3d 1006 [195 Cal.Rptr. 484] (1983). Cf. also the policies of the Natural Death Act (Health & Saf. Code, § 7185 et seq.).

5. It is this issue which gives rise to the concerns addressed in the Patient Self-Determination Act requiring healthcare facilities to inform patients of their policies regarding the withholding or withdrawing of life-sustaining treatments.

6. 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.: U.S. Government Printing Office, 1982, page 62.

7. In some cases, although not publicly acknowledged or practiced frequently, some religiously oriented institutions, rather than legally contest such matters, have transferred patients to other institutions where their wishes can be followed in order to avoid the dilemma which situations similar to Mr. Bartling's present. When the religiously oriented institution is the only institution in the immediate geographical area, patients' wishes are sometimes honored at the religiously oriented institution even though they may run counter to the institution's commitments. Such practices can be justified on the basis of the principles of autonomy, beneficence, fidelity, and justice due to the fiduciary pledge of the institution to meet the patient's needs and wishes in particular cases, even though the principles of the institution might be compromised in rare cases. The removal of feeding tubes in terminal patients may be an example of such situations.

8. Choice in Dying. Non-compliance provision maps. New York: Choice in Dying, Inc. 1997. Thirty-one states have non-compliance provisions allowing both healthcare institutions and individual providers to refuse to honor the provisions of a living will. Similarly, Thirty-five states have such provisions regarding healthcare agents. Fifteen states have such provisions permitting individual providers to refuse to honor the provisions of a living will. Eight states allow individual providers to refuse to comply with the instructions of a healthcare agent. Professional codes have applied the "conscience clause" approach to healthcare professionals as well. (Cf. Council on Ethical and Judicial Affairs, AMA. Code of medical ethics: current opinions with annotations. Chicago, IL: American Medical Association, 1996, Opinion 2.20)