Ethical Issues in the Terri Schiavo case Richard

Ethical Issues in the Terri Schiavo case Richard L. Voet, M. D. , M. A. Lisa H. Clark, M. D.

Nancy Curzan 1990 n 33 yo in a PVS after an automobile accident n After 3 years, the parents requested that the feeding tube be discontinued n Hospital insisted on a court order n A year before the accident, she indicated to her housemate that she would not want to live as a “vegetable”

Supreme Court n Cruzan is not brain dead or terminally ill n Cruzan's right to refuse treatment did not outweigh Missouri's strong policy favoring the preservation of life n her conversation with her housemate was unreliable for the purpose of determining her intent n States may require “clear and convincing evidence” n n n beyond a reasonable doubt (criminal - 99%) clear & convincing evidence preponderance of the evidence (civil - 51%)

U. S. SUPREME COURT CRUZAN v. DIRECTOR, MDH Justice Scalia “While I agree with the Court's analysis today, and therefore join in its opinion, I would have preferred that we announce, clearly and promptly, that the federal courts have no business in this field. ”

Nancy Curzan 1990 n further witnesses satisfied Missouri courts that such clear and convincing evidence of her wishes did exist n medically assisted nutrition and hydration were removed in December of 1990 n Pro-life demonstrators kept a vigil outside Cruzan’s nursing home. n Cruzan died two weeks later

Impact of the Cruzan case n State by state variation n States may insist on “clear and convincing” evidence that the patient would refuse lifesustaining treatment n Excludes “quality of life” as a consideration n Err on the side continuing treatment n Federal Patient Self Determination Act

Physician Assisted Suicide 1997 n Two cases brought before the US Supreme Court n Unanimous ruling (9 -0) that there is no constitutional right to PAS n States have an interest in preserving human life, preventing suicide, protecting vulnerable groups, protecting the integrity of the medical profession and avoiding the slippery slope to euthanasia n Withdrawal of treatment is distinct from PAS n Encouraged palliative care and adequate pain control

Terri Schiavo n February 1990 – Age 27 suffered a cardiac arrest from n n hypokalemia secondary to an eating disorder June 1990 - Court appoints Michael Schiavo as guardian; Terri Schiavo’s parents do not object November 1990 - Michael Schiavo takes Terri to California for experimental “thalamic stimulator implant” July 1991 - Terri is transferred to skilled care facility where she receives continuing neurological testing, and regular and aggressive speech/occupational therapy through 1994 May 1992 - Terri parents, Robert and Mary Schindler, and Michael Schiavo stop living together.

Terri Schiavo n August 1992 - Terri Schiavo is awarded $250, 000 in an out-of- court medical malpractice settlement n November 1992 – another malpractice trial awards Michael Schiavo about $300, 000 and about $750, 000 was put in a trust fund specifically for Terri Schiavo’s medical care n February 1993 - Michael Schiavo and the Schindlers have a falling-out over the course of therapy for Terri Schiavo; Michael Schiavo claims that the Schindlers demand that he share the malpractice money with them n July 1993 - Schindlers attempt to remove Michael as Terri’s guardian; first guardian ad litem, John H. Pecarek, states that Michael Schiavo has acted appropriately and attentively toward Terri Schiavo; the court later dismisses the suit.

Terri Schiavo n February 1994 – Terri developed a UTI, and in consultation with Terri’s physician, Michael requested not to treat the UTI and a DNR order; the nursing staff challenged the orders and Michael cancelled the request n May 1998 - Michael Schiavo petitions the court to authorize the removal of Terri Schiavo’s PEG tube; the Schindlers oppose, saying that Terri would want to remain alive. The court appoints Richard Pearse, to serve as the second guardian ad litem n December 1998 – Pearse issues his report concluding that Terri Schiavo is in a PVS with no chance of improvement; Michael Schiavo’s decision-making may be influenced by the potential to inherit the remainder of Terri Schiavo’s estate; and Terri’s prior comments to Michael were not “clear and convincing” evidence that she would want the feeding tube withdrawn

Terri Schiavo February 11, 2000 – Trial court ruling by Judge Greer Medical evidence supports a diagnosis of PVS n Terri’s comments were clear and convincing evidence that she would not wish to have life sustaining treatment if she were in a PVS n Terri’s comments did not limit or restrict the type of life sustaining treatment n n The decision was appealed and upheld

Terri Schiavo n Multiple motions and appeals n The Advocacy Center for Persons with Disabilities, Inc. files a federal court lawsuit that claims that the removal of Terri Schiavo’s PEG tube is abuse and neglect. n Political frenzy with a variety of opinions from diverse points of view n The feeding tube was withdrawn and Terri died on March 31, 2005

Ethical Decisions in Clinical Medicine Medical Condition Patient Preferences Diagnosis Prognosis Treatment options Informed consent Living will Healthcare proxy Quality of Life Contextual Features Prospects for recovery Residual impairments Burdens of treatment Religious or cultural issues Conflicts of interest Family dynamics Financial pressure

Ethical Decisions in the Schiavo Case Uncertainty, conflicts and priorities Medical Condition Patient Preferences PVS vs. MCS No living will Terri’s prior comments Who should be the surrogate Husband’s intent Quality of Life Contextual Features Sanctity of life Roman Catholic Financial conflicts of interest Family dynamics Disability discrimination Right to die advocates

Papal Allocution on Feeding Tubes “the administration of water and food, even when given by artificial means, always represents a natural means of conserving life, and is not a medical act” Pope John Paul II March, 2004

Feeding Tubes Benefit or Burden?

In 1991 81, 105 Medicare beneficiaries had claims submitted for gastrostomy insertion • In-hospital mortality • 30 day mortality • 1 year mortality • 3 year mortality 15% 24% 63% 81% – JAMA 1998; 279: 1973 -1976.

In patients with advanced dementia feeding tubes have shown: • No survival advantage. • No decreased risk of infection or pressure sores. • No improvement in functional status. – (conclusions from a complete review of literature) JAMA 1999; 282: 1365 -1370.

Burdens of feeding tubes in advanced dementia patients • Restraints are frequently required (in some studies 50%). • Self extubations are common (up to 61%). • Aspiration pneumonia occurs in about 50%. • Two-thirds require tube replacement at some point.

Conclusion of Johns Hopkins’ review • Feeding tubes for severely demented patients should be discouraged on clinical grounds because of lack of evidence of benefit. – JAMA 1999; 282: 1365 -1370.

Death by Dehydration • Decreased oral intake is part of the natural history of severe illnesses including severe dementia and metastatic cancer. • Endstage dementia patients steadily lose weight even when carefully fed and encouraged to eat and drink. • Many believe that dehydration aids comfort in the dying patient by decreasing secretions, coughs, nausea, and edema. The rising BUN and creatinine result in an altered level of consciousness that appears to be peaceful.

My Approach • Goal: Support the wishes of the patient as best as they can be determined. • Questions to be asked: – Is there a Directive to Physicians? – Is there a Medical Power of Attorney? – Who is the surrogate decision maker?

I explain: • Feeding tubes are technically feasible and an option. • They do not appear to prolong life, prevent infection or pressure sores, restore function, and they do not appear to provide comfort. • If a tube is not used, dehydration will almost certainly be a part of death. • Dehydration does not appear to be a painful pathway to death.

I explain: • Food, drink, ice chips, or moisture swabs may be offered and used as desired. • Medicines for pain and discomfort will be available. • Hospice services are an option.

Additionally: • I stress to the family that there is no absolute right or wrong. • I will support any decision they make. • I acknowledge that I have an anti-tube bias based on my background and medical knowledge and experience.