The Terri Schiavo saga
Ethical and legal aspects and implications for clinicians
Paul S. Mueller
Division of General Internal Medicine, Mayo Clinic, Rochester, MN, United States
KEy WoRds ethics, life support care, withholding treatment, enteral nutrition, palliative care
AbsTRACT On March 31, 2005, Terri Schiavo (born December 3, 1963) died – the final complication of a cardiac arrest on February 25, 1990. Her death was preceded by the withdrawal of artificially administered hydration and nutrition through a feeding tube. Prior to her death, Terri’s saga was the focus of in‑ tense medical, ethical, and legal debates in the United States (US) and elsewhere. These debates were characterized by confusion about the facts, ethical principles, and laws relevant to the case. Much of the confusion revolved around a number of ethical and legal questions including: Is it ethi‑ cally and legally permissible to withhold or withdraw life‑sustaining treatments from patients who do not want the treatments? Is withholding or withdrawing life‑sustaining treatments the same as physician‑assisted suicide or euthanasia? Is artificially administered hydration and nutrition a medical treatment or mandatory care akin to bathing? What were Terri’s values, preferences, and goals regard‑ ing life‑sustaining treatments? In this article, the medical, ethical, and legal data related to the case and the aforementioned ethical and legal questions raised by it are reviewed. Finally, the clinical implications of the saga, such as the need for clinicians to be more proactive in educating patients about their rights related to making health care decisions, end‑of‑life care options, and advance care planning (e.g., completing an advance directive) are discussed. Notably, given that the Schiavo saga occurred in the US, this article is written from a US perspective.
Correspondence to: Paul S. Mueller, MD, MPH, FACP , Division of General Internal Medicine and Program in Professionalism and Bioethics, Mayo Clinic, 200 First Street SW, Rochester, MN 55905, USA, phone: +1‑507‑284‑0155, fax: +1‑507‑284‑5889, e‑mail: firstname.lastname@example.org Received: July 29, 2009. Accepted: July 29, 2009. Conflict of interest: Dr. Mueller is a member of the Boston Scientific Patient Safety Advisory Board and is an Associate Editor of Journal Watch General Medicine (neither of these are relevant to this article). Pol Arch Med Wewn. 2009; 119 (9): 574‑581 Copyright by Medycyna Praktyczna, Kraków 2009
Introduction On March 31, 2005, Terri Schia‑ vo (born December 3, 1963) died – the final complication of a cardiac arrest on February 25, 1990. Her saga was the focus of intense medi‑ cal, ethical, and legal debates in the United Sta‑ tes (US) and elsewhere. These debates were cha‑ racterized by confusion about the facts, ethical principles, and laws relevant to the case. Much of the confusion revolved around the following questions: Is it ethically and legally permissible to withhold or withdraw life‑sustaining treat‑ ments from patients who do not want the treat‑ ments? Is withholding or withdrawing life‑susta‑ ining treatments the same as physician‑assisted suicide or euthanasia? Are artificially administe‑ red hydration and nutrition medical treatments or mandatory care akin to bathing? What were Terri’s values, preferences, and goals regarding life‑sustaining treatments should she become seriously ill and unable to make decisions for POLSKIE ARCHIWUM MEDYCYNY WEWNĘTRZNEJ
herself? Who speaks for the patient when the pa‑ tient cannot? What are the duties of surrogate decision makers? What should be done if a sur‑ rogate is suspected of making decisions that are inconsistent with the patient’s health care‑rela‑ ted values, preferences, and goals or not acting in the patient’s best interest? Fortunately, a large body of data related to the Schiavo saga is available for review. A very useful website created and maintained by the Uni‑ versity of Miami provides a timeline of and links to original reports, judicial decisions, and testi‑ mony presented during the court proceedings of the Schiavo saga.1 In this article, these data and the ethical and legal aspects of the case will be reviewed. In addition, the aforementioned questions will be answered as objectively as pos‑ sible. Notably, given that the Schiavo saga oc‑ curred in the US, this article is written from a US perspective.
2009; 119 (9)
For example. the courts formally appointed Michael as Terri’s surrogate decision maker. at the age of 26 years.11. their health care‑related values.g. Key ethical and legal facts of the schiavo saga The ethical and legal facts of the Schiavo saga are de‑ scribed in detail elsewhere.Key medical facts of the schiavo saga On Febru‑ ary 25. Because Terri could not swallow water or food. Michael requested that the court authorize REVIEW ARTICLE The Terri Schiavo saga
the removal of Terri’s feeding tube. stating they would continue the feeding tube regardless of Terri’s preferenc‑ es. the Florida Su‑ preme Court. the Dis‑ trict Court of Appeals of Florida. nonmaleficence.3 The police investigation at the time of Ter‑ ri’s cardiac arrest4 and the autopsy after her death5 revealed no evidence of physical abuse. placement of a feed‑ ing tube to provide hydration and nutrition) may be at odds with the patient’s values. to avoid a treatment perceived as burdensome). and their rights of self‑determination.e. after all legal appeals were exhausted. her parents. and resolution of moral problems that arise in the care of pa‑ tients. whereas nonmaleficence refers to the duty to pre‑ vent or do no harm. Numerous treatments and therapy pro‑ grams failed to restore any cognitive or motor function.3.. indeed.14 Four prima facie principles characterize most ethical concerns in clinical practice: benef‑ icence. 1990. these principles may be at odds with each other.
Principles of biomedical ethics Clinical ethics is the identification. did not dispute Mi‑ chael’s status as Terri’s surrogate. Frequently‑asked questions asked during the schiavo saga Is it ethically and legally permissible to with‑ hold or withdraw life‑sustaining treatments? From
an ethical standpoint. that she would not want artificially administered hydration and nutrition if she were in a PVS). Robert and Mary Schindler.8 According to Florida law. In general. the courts also affirmed the default position of favoring the preserva‑ tion of life (and therefore maintaining life‑sus‑ taining treatments) in situations in which a pa‑ tient’s wishes are unknown.15 Beneficence refers to the cli‑ nician’s duty to promote the interests of patients. as a result.g.2 Despite being resuscitated. following her cardiac arrest.e. and gag reflexes. respect for patient auto nomy is the principle that underlies a patient’s right to control what is done to his or her body
. Terri Schiavo was married to Michael Schiavo. the Schindlers encouraged Michael to get on with his life and date other women.9 During this time. one principle may take priority over the oth‑ ers. prior to her cardiac arrest. Indeed. and Michael and the Schindlers lived together. and the courts affirmed Michael’s status as Terri’s surrogate. Terri manifested no meaningful recovery of brain func‑ tion. about 2 weeks after hydration and nutrition were stopped the third time. court proceedings. Michael began to believe that Terri would not recover from her PVS. Recalling that. is extreme‑ ly rare. Computed tomography of the head revealed severe brain atrophy and electroencephalography revealed no cortical ac‑ tivity. a clinician’s de‑ sire to help a patient (e. numerous petitions.. im‑ plantation of a thalamic stimulator. and goals (e. Court testimony affirmed that Michael always acted appropriately and in Terri’s best interests. respect for patient auto‑ nomy. depend‑ ing on the circumstances of a given clinical scenar‑ io. and appeals occurred. Respect for patient autonomy refers to the duty to respect patients. During 1992. and the US Supreme Court were involved in the saga multiple times. All lev‑ els of the judiciary were involved. etc.6. Ter‑ ri developed severe hypoxic‑ischemic encephalop‑ athy and never regained consciousness.12 The courts ruled that “clear and convincing” evidence of Terri’s preferences regarding life‑sus‑ taining treatments existed (i.. the relationship between Michael and the Schindlers deteriorated. All lev‑ els of the executive and legislative branches of the Florida and US governments (including the US president and Congress) were also involved.10 By 1994. Furthermore. Terri Schiavo had a cardiac arrest. Artificially administered hydration and nutrition using Terri’s feeding tube were stopped three times and re‑started twice. Terri Schiavo died on March 31. the Schin‑ dlers petitioned the court to remove Michael as Terri’s surrogate. Terri had expressed to others that she would not want to be kept alive artificially should she become seriously ill and if there was no hope for meaningful recov‑ ery11. For sever‑ al years after Terri’s cardiac arrest. The Schin‑ dlers disagreed. physical therapy.). a percutaneous endoscopic gastrostomy feeding tube was placed to provide hydration and nutrition. Addi‑ tionally.g. preferences and goals. analysis.9 Over the next 4 years. who experienc‑ es hypoxic‑ischemic encephalopathy. Michael pursued aggressive treatments for Terri (e.. age. or race). based on medical need.7 Thus. Michael Schiavo was the surro‑ gate health care decision maker for Terri. The courts and the state of Flor‑ ida accepted the diagnosis of PVS and that Ter‑ ri lacked decision‑making capacity. 2005. Notably.13 As a result. and justice.6 Nevertheless. preferenc‑ es. The reasons for this deterioration are unclear (and probably al‑ ways will be). hydration and nutrition provided through her feeding tube were stopped for the first time dur‑ ing April 2001. reflexive responses to light. She was ultimately diagnosed with persistent vegetative state (PVS) characterized by alternating periods of wakefulness and sleep. Notably.. not on patient characteristics such as gender. The cause of the arrest re‑ mains unknown. In addition. only the sa‑ lient facts will be given here. no prin‑ ciple has priority over another. meaningful cognitive or mo‑ tor recovery 3 months or more after the diagnosis of PVS has been made in a patient. Ultimately. However. At the time of her cardiac arrest. occupational therapy. Justice refers to the duty to treat patients fairly (i.
the nutritional formulas that are infused through a feeding tube must be managed by a nutritionist. 55 bioethicists submitted a brief to a Flori‑ da court. Nancy’s family. In the 1986 Bouvia23 case. it is unethical for a clinician to begin or con‑ tinue a treatment that a patient has refused. which stated: “The implicated bioethical issue is not whether elderly or disabled persons can be deprived of wanted treatment. First. Fur‑ thermore. who claimed she would not want such treatment in her current state.16 Furthermore. and the State of Missouri over whether the feeding tube could be with‑ drawn. or request the with‑ drawal of. in‑ cluding artificially administered hydration and nutrition. In fact. The Governor [of Florida] wanted to deprive Terri Schiavo of that right. was the 1990 US Supreme Court Cruzan24 decision. patients with feeding tubes can experience com‑ plications. which the judicial process has determined she would want to exercise. a life‑sustain‑ ing treatment. some states. Fourth.19 Regardless of in‑ tent. it was a medical treatment. the court made no distinction between artificially administered hydration and nutrition and other life‑sustaining treatments. about 10% of patients with percutaneous endoscopic gastrostomy feeding tubes experience complications due to the tube in the long term. the court acknowledged that in‑ dividual states may adopt clear and convincing ev‑ identiary standards for withholding or withdraw‑ ing life‑sustaining treatments if the patient is in‑ capable of speaking for himself or herself. including treatments that are life‑sustaining.29 Artificially administered hy‑ dration and nutrition are no different than oth‑ er life‑sustaining treatments that bypass other pathologies that prevent normal physiological and anatomical functions (e.15. Notably. Indeed. depositions of members of Terri’s family were
576 POLSKIE ARCHIWUM MEDYCYNY WEWNĘTRZNEJ
presented to the court which recounted state‑ ments made by Terri in which she had expressed that she would not want to be maintained on ar‑ tificial life support should she become serious‑ ly ill. The Missouri Supreme Court declared that clear and convincing evidence of the patient’s wishes must be presented before life‑sustaining treatments are withheld or withdrawn. In the 1976 Quinlan22 case. beginning or continuing a treatment that a patient has refused is illegal (constituting battery). a number of US court cases have affirmed a patient’s right to refuse. no US court has found a cli‑ nician liable for wrongful death or murder for granting an informed patient’s (or a surrogate’s) refusal of. Therefore. Nancy Cruzan. As previously noted. In fact. there are no eth‑ ical or legal differences between withholding or withdrawing treatments. given her PVS. in reference to the Schiavo case. have the right to refuse life‑sustaining treatments including artificially administered hydration and nutrition and that such a refusal is not akin to suicide. as with any treatment.g. including Florida2 5 . an unwanted treatment whether or not the patient is terminally ill.. which took place in Florida. in which the US Su‑ preme Court ruled that artificially administered hydration and nutrition are medical treatments. the New Jer‑ sey Supreme Court declared the right to privacy includes the right to refuse unwanted treatments including life‑sustaining treatments.e. the feeding tube is a relatively new technology that was de‑ veloped specifically for patients who have patho‑ logies that impair or preclude swallowing. However. have a clear and convincing standard26 .20 Notably. The US Supreme Court affirmed that competent patients have the right to refuse unwanted treatments.6
2009. the courts ruled that clear and convincing evidence of Terri’s prefer‑ ences regarding life‑sustaining treatments exist‑ ed and that she would not want. From a legal standpoint. patients may de‑ cline a treatment to which they previously con‑ sented if their health care‑related preferences and goals have changed. It is certainly true…that ‘the State has a compelling interest in ensuring that people with disabili‑ ties are not deprived of basic human rights’ … but among those basic human rights is the right to refuse medical treatment. the feeding tube that was required to sustain her was beyond the level of basic care. and whether or not the treatment prolongs life (and not using it re‑ sults in death). 119 (9)
. however.e. During the Schiavo saga. whether or not they are terminally ill.. The defini‑ tive statement in the US. or request to withdraw. there are several reasons why artificially administered hydration and nutrition are medical treatments and not ba‑ sic care (i. or request the withdrawal of. care that could have been adminis‑ tered by clinicians before the modern era such as bathing and proper bedding). but also during the Cruzan case.18.17 In the US. the California Court of Appeals de‑ clared that competent persons. In fact. who was in a PVS after an automobile accident and was sustained with artificially administered hydration and nu‑ trition through a feeding tube. long‑term artificially administered hydration and nutrition. Third. The court also affirmed the rights of incompe‑ tent persons to refuse life‑sustaining treatments through prior statements and surrogate decision makers. the matter was settled with the Cruzan decision.28. Second. in the case of Ter‑ ri Schiavo. i. From a practical standpoint. hemodialysis for kidney failure and mechanical ventilation for re‑ spiratory failure). life‑sustaining treat‑ ments. This case in‑ volved a patient..”27
Are artificially administered hydration and nutrition medical treatments or mandatory basic care? This
question was raised and debated not only during the Schiavo saga.including the right to refuse. but how to implement their fundamental right to decline life‑prolonging measures they would abhor. the court made no distinction between artificially administered hydration and nutrition and other life‑sustaining treatments.21 From a legal standpoint. placing a percutaneous endoscopic gastrostomy feeding tube requires endoscopy or a surgical pro‑ cedure.
and arduous process…In addition to feel‑ ing pangs of hunger and thirst. benefits. or request the with‑ drawal of. in cases of doubt. and other comfort measures. a new pathology is introduced (e. Representative Joe Pitts.. the cause of death is kidney failure. respect for patient autonomy is the ethical principle that underlies a patient’s right to control what is done to his or her body including the right to refuse. be mandatory. not the treatment withdrawal. or any life‑sustaining treatment. Pri‑ or research has shown that most patients do not experience significant thirst when artificially ad‑ ministered hydration is discontinued. US courts assume that patients would choose to be kept alive in exercis‑ ing their rights to privacy. In the US. when we do “medicine be‑ comes less a servant of humankind and more a master”.. the patient personally terminates his or her life using a means provided by a cli‑ nician (e. and have been applied to inter ventions that today we clearly regard as medical treatments (e. In‑ deed.
Is terminal dehydration painful? Inaccurate de‑ scriptions of the consequences of withdrawing artificially administered hydration and nutrition circulated during the Schiavo saga. does not mean that good palliative care. The in‑ tent of withholding or withdrawing a treatment is freedom from a treatment that is perceived as burdensome.g. In physician‑as‑ sisted suicide.g.. lips. From an ethical stand‑ point. not a patho‑ logical condition. lethal prescription). with‑ holding or withdrawing artificially administered hydration. Speaker. the nose bleeds because of the dry‑ ing of mucous membranes. and the victim may experience sei‑ zures.. when a pa‑ tient with kidney failure dies after refusing hemo‑ dialysis. the US Supreme Court made a clear distinction between withholding or withdrawing unwanted treatments and euthanasia: “The distinction com‑ ports with fundamental legal principles of cau‑ sation and intent. “We confirm today that a court’s default position must favor life. the cause of death is respiratory failure. hemodialysis and mechanical ventilation).”9 Clini‑ cians should ensure that patients and their loved ones understand the risks.6 Notably. disease or in‑ jury). a life‑sustaining treatment. the cause of death is the underlying pathology (e. physician‑assisted suicide and euthanasia are deliberate acts in which a person. Likewise.From an ethical standpoint. declared: “Mr. not the withdrawal of the feed‑ ing tube.g. was the cause of her death.e. death by dehydration is a painful. For exam‑ ple. As discussed previously. In fact. Rather. is the final arbiter of death.6 Nevertheless.16. her wish would have been respected. It is wrong to insist that specific medical treatments. this claim is inaccurate. On one hand.35. While the de‑ cision to withhold or withdraw a life‑sustaining treatment may lead to death. le‑ thal injection).g. and alterna‑ tives to life‑sustaining treatments and especial‑ ly the differences between water and food con‑ sumed by those who are able to eat and drink. it differs from a de‑ cision to pursue physician‑assisted suicide or eu‑ thanasia. these symptoms are easily alleviated with sim‑ ple local measures. symptom control. unwanted treatments. medical treatments are foreign to the body as evidenced by the fact that most people get along well without the treat‑ ment until they become ill or injured. artificially adminis‑ tered hydration does not necessarily relieve thirst in alert terminally ill patients. but
. he dies from an underlying fatal disease or pathology.. Had it been discov‑ ered that Terri Schiavo wanted artificial life sup‑ port. the clinician terminates the patient’s life (e.e. Ben‑ eficial as they may be. In euthanasia. In the case of Terri Schiavo. i. If her preferences had remained unknown. the artificially administered hydration and nutrition) would have been continued. bathing.36 For example. Patients should be encouraged to express verbally their values. when a patient refuses life‑sustaining medical treatment.
Is withholding or withdrawing artificially admin‑ istered hydration and nutrition the same as assist‑ ed suicide and euthanasia? Another claim made
during the Schiavo saga was that withdrawing Terri’s feeding tube was akin to physician‑assisted suicide and euthanasia. Compared to starvation and dehydration. not the treatment re‑ fusal. the skin. on the floor of the US House of Represen‑ tatives. and if they do. questions about what represents basic yet mandatory care and what represents medical treatment have sur‑ faced throughout the history of medicine. many people object to deny‑ ing patients hydration and nutrition.. and hydration and nutrition administered through a feeding tube. death by hanging. scrupulous at‑ tention to palliative care is mandatory. such as artificially administered hydration and nutri‑ tion. ago‑ nizing.”30 Representative Pitts’ statement is untrue. the intent of which is death of the patient. a new pathology is not introduced. or even the elec‑ tric chair seems humane. preferences.33 Also. In contrast. First. firing squad. such values are respected. In physician‑assisted suicide and euthanasia. when a patient with respiratory failure dies after withdrawal of mechanical ven‑ tilation. heaving and vomiting may ensue because of the drying out of the stom‑ ach lining.34 However. and tongue crack.g. drugs)..32. On the other hand. a judge during the Schiavo saga declared.31 Patients who forgo artifi‑ cially administered hydration usually experience REVIEW ARTICLE The Terri Schiavo saga
comfortable deaths. life sup‑ port (i. when a patient dies after withholding or withdrawing a treatment. in the 1997 Vacco v Quill decision. should also be withheld. her underlying pa‑ thology (PVS and resultant inability to swallow water and food). refusing or withdrawing life‑sustaining treatments is a request to avoid unwanted treatments and to die naturally. and goals regarding life‑sustaining treatments to their loved ones and clinicians and in writing as part of an advance directive (see below).
and so on). The living will allows the patient to list treatments and other actions that should or should not be implemented in spe‑ cific circumstances (e.26 Furthermore. adults have the right to com‑ plete an advance directive (AD) – written instruc‑ tions for future health care if the patient lacks decision‑making capacity. if they were to act as Ter‑ ri’s surrogate decision maker. surrogates may not know how the patient would decide. terminal illness). preferences..”37 In other words. but rather people have a right to be left alone. given the medical facts and prognosis. 5) an adult sibling. but also her spouse – the two highest ranking positions for selecting a surrogate by law in Florida – which accounts for why he was Terri’s surrogate deci‑ sion maker throughout the saga. Oregon and Washington. preferences. make decisions that would be in the best inter‑ ests of the patient.39 In these sit‑ uations. they disqualified themselves from being Terri’s surrogate decision makers.”43 Terri’s parents.. While two US states.g. In the ab‑ sence of an AD. court‑appointed surrogate. testified during court proceedings that.41 The durable power of attorney allows the patient to designate a surrogate. Terri Schiavo did not have an AD. this person may or may not be a family member. the Schindlers. there are three forms of ADs: the du‑ rable power of attorney for health care. the liv‑ ing will. a surrogate must use “substitut‑ ed judgment”. and goals40 . it is not that people in the US have a “right to die”. If it appears that a surro‑ gate is making decisions that are inconsistent with the previously expressed health care‑related values. or majority of adult siblings. 6) an adult relative. All 50 states and the District of Columbia in the US have laws that recognize ADs as an extension of pa‑ tient autonomy for preserving patient autonomy when patients lack decision‑making capacity. i. or designated a surrogate to execute an advance di‑ rective…health care decisions may be made for the patient by any of the following individuals.
578 POLSKIE ARCHIWUM MEDYCYNY WEWNĘTRZNEJ
The ethical principle of respect for patient auto nomy requires that a surrogate follow instruc‑ tions in the patient’s AD. the surrogate must use the “best interest” stan‑ dard.
What are the duties of a surrogate decision maker?
impaired decision‑making capacity. adult child. most Americans do not have ADs. he is killed by that medication… [In Cruzan] our assumption of a right to refuse treatment was grounded not…on the proposition that patients have a general and abstract ‘right to hasten death’. if one exits. the rele‑ vant Florida law states. what would he or she tell you to do?”3 Nevertheless.
Who speaks for the patient when the patient can‑ not? Clinicians frequently care for patients with
in the following order of priority: 1) judicially appointed surrogate.. which might include designating a surrogate decision maker.e.
What should be done if it is suspected that a sur‑ rogate is not acting in the best interests of the pa‑ tient? While surrogates have the authority to
make decisions for patients. followed by the spouse. and incorporate patients’ ADs into their medi‑ cal records. make decisions as closely as possible to those the patient would make if ca‑ pable. Michael not only was Terri’s court‑appointed surrogate. Terri Schiavo lived in Flor‑ ida. ethically and legally. In general.12 Hence.6 During the Schiavo saga. euthanasia is illegal throughout the US. the Patient Self‑Determination Act.if a patient ingests lethal medication prescribed by a physician. 4) a parent of the patient. In these situations. requires that health care institu‑ tions ask patients whether they have an AD. clinicians must iden‑ tify a surrogate decision maker. 2) the patient’s spouse. In the US. Terri’s parents.42 Unfortunately. in‑ form patients of their right to complete an AD. and the combined AD which has fea‑ tures of both a power of attorney and living will.e. In addition. if there is no indica‑ tion of what the patient would have chosen. but on well established [sic]. 119 (9)
. or majority of adult children.. The ideal surro‑ gate is the person who best understands the pa‑ tient’s health care‑related values.g. tra‑ ditional rights to bodily integrity and freedom from unwanted touching. a useful question to ask a surrogate is. 3) an adult child of the patient. Many states have laws that specify a hierarchy of surrogates (e. which has a specific hierarchy for establish‑ ing a surrogate in the absence of an AD.…the surrogate’s decision to withhold or withdraw life‑prolonging proce‑ dures must be supported by clear and convinc‑ ing evidence that the decision would have been the one the patient would have chosen had the pa‑ tient been competent or. Notably.”43 During the Schiavo saga. or 7) a close friend of the patient. they would insist on maintaining the feeding tube even if Terri had left written instructions to the contrary. In these situations. “If an incapacitated…pa‑ tient has not executed an advance directive. questioned the appropriateness of Michael as
2009. Florida law also states. then the physician should act to protect the patient and. and then had to return to it. have legalized physician‑assisted suicide. “Before exer‑ cising that incapacitated patient’s rights to select or decline health care. if necessary. physicians must rely on surrogates to make decisions for the patient. neither the American Col‑ lege of Physicians19 nor the American Medical Association38 endorses physician‑assisted sui‑ cide and euthanasia. and goals of the patient or is making decisions that are not in the best inter‑ ests of the patient. a federal law. the Schindlers. that the decision is in the patient’s best interest. i. the ethical principle of beneficence requires that physicians act on be‑ half of their patients.39 Likewise. “If the pa‑ tient could wake up for 15 minutes and under‑ stand his or her condition fully. seek a court‑ordered change of the surrogate. In order to achieve substituted judgment.
Accessibility verified July 26. “unless one adopts the position that sheer biological existence is what is sacred about human life. 2009. Available at: http://www6. according to one review of the case: “In our opinion.miami. The incompetent patient has the same right (as exercised through a surrogate decision maker). Christopher Hook. However.7 Furthermore.g.). the medical. there are no differences between withholding life‑sustaining treatments and withdrawing life‑sustaining treatments. a treatment she did not want – is con‑ sistent with precedence established by similar cases in the US (TAbLE ). Withholding and withdrawing life‑sustaining treatments are not the same as physician‑assisted suicide and euthanasia. 2009.7 Indeed. not on judgments on the value of her life. clinicians should ensure that these refusals or requests are informed. Lewis B. but rather a right to be left alone. 2009. 2 Thogmartin JR. When patients refuse or request the withdrawal of treatments. Another concern expressed during the Schia‑ vo saga was that withdrawing artificially admin‑ istered hydration and nutrition from Terri would result in widespread disregard of persons with dis‑ abilities and others judged to have poor quality of life. Finally. patients’ interest in advance care planning in‑ creased during and after the Schiavo saga and Terri’s death. US law. Terri Schiavo – a tragedy compounded. the answer to this question is “the patient”. Available at: http:// www6. Memo to State Attorney Bernie McCabe from pros‑ ecutors Doug Crow and Bob Lewis. preferences.pdf. countless motions. “quality of life” debate. REFEREnCEs
1 Cerminara K.miami. Goodman K. MD for his valuable input into this article. whose “sanctity” and whose “quality”? In the US. the courts consistently found that Michael acted properly as Terri’s surrogate in that he reflected her previous‑ ly expressed wishes and views about life‑sustain‑ ing treatments and acted in her best interests. There are a number of lessons to be learned from the Schiavo saga. Ethically and legally.edu/ethics/schiavo/pdf_files/022590_police_report.htm. 352. However. judicial attention. etc. Clinicians should encourage public dis‑ cussion of end‑of‑life issues and should oppose policies that mandate medical treatments for pa‑ tients who might not want them. the courts carefully considered all of the claims made by Terri’s husband and her parents.44 Clinicians should review patients’ ADs and ensure that they reflect patients’ values. Key events in the case of Theresa Marie Schiavo. First.edu/
. Patients should be en‑ couraged to engage in advance care planning by expressing their values.
her surrogate and sought court‑ordered remov‑ al of him as her surrogate. Accessibility verified July 26.
Acknowledgments The author is indebted to C. and goals. and goals verbally to their clinicians and loved ones and in writing by completing ADs. The Ter‑ ri Schiavo saga was a tragedy. some argued the Schiavo saga was essentially a “sanctity of life” vs.10
Competing ethical frameworks during the schiavo saga The guiding ethical principle throughout
the Schiavo saga was respect for patient autonomy. in the US. particularly those outlined in this article (e. and relevant US
REVIEW ARTICLE The Terri Schiavo saga Conclusions and implications for clinicians
laws. Clinicians should encourage patients to discuss end‑of‑life values. and goals. the right to engage in advance care planning by completing an AD. 5 Crow D. preferences. Report of autopsy. considerations of sanctity inevitably involve judgments of qual‑ ity”. this case shows that the judicial process works at the end of life. Artificially administered hydration and nutrition are medical treatments. Nevertheless. Available at: http://www6. However. The ethical principle of respect for patient autonomy. In fact. For example.”7 The courts based their decisions on Terri’s previously expressed wishes. Throughout a lengthy trial and evidentiary hearing. Throughout the saga. and the court deci‑ sions during the Schiavo saga affirm the prerog‑ ative of patients to make decisions about medical treatments according to their own health care‑re‑ lated values. oral ar‑ guments. and goals. Available at: http://www6.TAbLE Precedence established by landmark cases in the United States concerning the withholding and withdrawing of life‑sustaining treatments The competent patient has the right to refuse or request the withdrawal of life‑sustaining treatments regardless if the patient is terminally ill. the outcome of Schiavo saga affirmed the prima‑ cy of the individual patient’s values. clinicians and the broader health care community should be more proactive in educating patients about their rights related to making health care decisions. other ethical frameworks were in‑ voked during the saga. “the wisdom of deciding this case within the moral framework of individual auto‑ nomy…is that it portends nothing as a general policy…” for persons with disabilities. or legal scrutiny as the Ter‑ ri Schiavo case. No clinician has been held liable for wrongful death or murder for granting an informed patient’s request to withhold or withdraw life‑sustaining treatments. and numerous appeals to every avail‑ able state and federal court. legal. 16: 1630‑1633. no end‑of‑life guardianship case in US his‑ tory has generated as much high‑quality evidence.. evidence regarding Terri’s preferences and goals for artifi‑ cial life‑sustaining treatments. end‑of‑life care options. clini‑ cians and society should value and reassure our disabled communities. preferences. the final outcome of the Schiavo saga – her death following with‑ drawal of artificially administered hydration and nutrition. ethical. 4 St Petersburg Police Department incident report. the law did not fail Terri Schiavo. Accessibility verified July 26. not mandatory care.miami. Indeed. Ultimately. 3 Quill TE. the right to refuse and request the withdraw‑ al of unwanted treatments. Notably. and goals in health care decision making.edu/ethics/schiavo/timeline. how‑ ever. edu/ethics/schiavo/pdf_files/061505‑autopsy. preferences. New Engl J Med.miami. and social facts of the case are clear.pdf. The right to refuse or request the withdrawal of life‑sustaining treatments is not a “right to die”. preferences. Indeed.
et al. Available at: www. 41 Nishimura A. et al. Discontinuing an implantable cardio‑ verter defibrillator as a life‑sustaining treatment. Chicago: American Medical Association. J Gen Intern Med.pdf. Accessibility verified July 26. Accessibili‑ ty verified July 26. Arch Intern Med. Available at: http://www. Pub L 101‑508. Lawrence J. 16 Mueller PS. 156: 249‑256. 4206 and 4751 (Medi‑ care and Medicaid. 282: 1365‑1370.
27 Amicus curiae brief in support of Michael Schiavo as guard‑ ian of the person of Theresa Marie Schiavo (filed with the consent of the parties). JAMA. incapacitat‑ ed. 497 US 261 (1990). Snyder L. http://ftp. Saunders CM.90‑2908GD‑003. Congressional Record ‑ House. 349: 359‑365. 21 Gostin LO. 225 Cal Rptr 297 (1986). at 1146‑47. Churchill LR. 2009. 2005. 42 USC 1395cc(a) (I)(Q).pdf. 9.com/news/ nation/2005‑03‑24‑schiavo‑money‑cover_x. Accessibility verified July 26. 1994.law. Deciding life and death in the courtroom: from Quinlan to Cruzan. Accessibil‑ ity verified July 26. Mayo Clin Proc. March 24. 2009. 2008. Sutcliffe JM. 429 US 922 (1976). 2004. Siegler M. Patients who com‑ plete advance directives and what they prefer. 2006. Am J Cardiol. Accessibility verified July 26.html. 1994. Feud may be as much over money as princi‑ ple. Case No. 2005. 1395 mm (c)(8). Landefeld CS. Barold S. Arch Intern Med. 2003. February 11. 2003. J Gen Intern Med. Available at: http://www6. Council on Ethical and Judicial Affairs.fsu. Executive order Number 03‑201. The Terri Schiavo case: legal.edu/ethics/schiavo/pdf_files/1‑24‑01_DCA_Opinion. Kuczewski M. 1999. 1396a(a)(57).gov/statutes/index. and Vacco ‑ a brief history and analysis of constitution‑ al protection of the “right to die. Ann Intern Med. Comfort care for terminal‑ ly ill patients: the appropriate use of nutrition and hydration. 1996.htm. 34 Ellershaw JE. 1395cc(f). Winslade WJ. Luchi RJ. 2009. File No. N Engl J Med. 9 Wolfson J. miami.org/gpo. Advance care planning. Arch Intern Med. 2009. and 1396a(w) (Supp 1991). 143: 744‑748.usatoday. 32 Ganzini L. Hall WJ. American College of Physicians‑American Society of Internal Medicine End‑of‑Life Care Consensus Panel. Fleming KC. 2007. 38 American Medical Association. Ethics and Human Rights Committee. Reach and impact of a mass media event among vulnerable patients: the Terri Schiavo story. 278: 1523‑1528. 1396a(a)(58). Leffler C. 23: 1854‑1857. 31 McCann RM. 1995. pdf.edu/ ethics/schiavo/pdf_files/wolfson’s_report. 24 25 26 Cruzan v Director. Wray NP. 14 Jonsen AR. Available at: http://www6. The Terri Schiavo saga: the making of a tragedy and lessons learned. 2009. ethi‑ cal. Principles of Biomedical Ethics. Kriegsman DM. incapacitated. 350: 7‑8. Rodgman E. 105 NE 92. et al. 2009. Mueller PS.pdf. 23 Bouvia v Superior Court. December 1. 2008. Mayo Clin Proc. Snyder L. Mueller PS. Gillick MR. Discom‑ fort in nursing home patients with severe dementia in whom artificial nutri‑ tion and hydration is forgone. JAMA.
36 Meisel A. 93 (1914). 2009. 15 Beauchamp TL. 2000. 142: 560‑582.edu/ethics/schiavo/Schiavo_Controversy_Fla_Gov_ Exec_Order_No_03‑201. Goy ER. cfm?App_mode=Display_Statute&URL=Ch0765/titl0765. 11: 287‑293. Accessi‑ bility verified July 26. Ameri‑ can College of Physicians.edu/ethics/schiavo/pdf_files/021100‑Trial_Ct_Order_0200. The 2008 Florida Statutes: chap‑ ter 765. Ethical issues in geriatrics: a guide for clinicians. 2000. 42 Omnibus Budget Reconciliation Act of 1990 (OBRA‑90) (Patient Self‑Determination Act of 1990). 40 Hayley DC. 2005. Available at: http:// www6.resource. 2001: pp 7‑9.pdf. Code of Medical Ethics: Current Opinions with Annotations. 17 Quill TE. 1997. realities. 2009. H9741 (October 21. 5th ed.edu/ethics/schiavo/timeline.miami. 2009. 43 Florida Senate. Available at: http://www6. In re: Guardianship of Browning. Arch Intern Med. 37 Vacco v Quill. 80: 1449‑1460. respectively). Ethics manual. 165: 1729‑1735. Evenson LK. 283: 1061‑1063. 156: 2521‑2526. 211 NY 125. 2004. 10: 192‑197. 29 Finucane TE.edu/library/flsupct/ sc04‑925/04‑925ac55bioethicists. 35 Rhymes JA. 8 Florida Governor’s Office. 129‑30. N Engl J Med. et al.gov/re‑ cord/2003/2003_H09741. 1996. J Pain Symptom Manage. Available at: http://www. 6th ed. Cassel CK. Kirshner HS. Accessibility verified July 26.flsenate. JAMA. Seven le‑ gal barriers to end‑of‑life care: myths. McGraw‑Hill. 179 Cal App 3d 1127. 30 Starvation is an inhumane way to die. Ann Intern Med.
POLSKIE ARCHIWUM MEDYCYNY WEWNĘTRZNEJ
2009. 39 Hanson LC. 12 Excerpt of trial testimony of Father Murphy. cert denied. Childress JF.pdf. 2001. 18 Meisel A.miami. et al.miami. 2005. and medical perspectives. 22 In re: Quinlan. A report to Governor Jeb Bush in the matter of Theresa Marie Schiavo. 10 (Fla 1990). Mayo Clin Proc. Petersen NJ. 20 Schloendorff v Society of New York Hospital. 2009. Miller LL. and grains of truth. 10 Copeland L. Travis K. 74: 205‑207. 156: 1018‑1022. 2003). 6 Hook CC. Pantilat SZ. Groth‑Juncker A. 79: 554‑562. USA Today. 13 In re: guardianship of Theresa Marie Schiavo. 11 In re: the guardianship of Theresa Marie Schiavo. 2008‑2009 ed. 82: 1480‑1486. Onwuteaka‑Philipsen BD.ethics/schiavo/pdf_files/070705‑Crow‑Lewis‑to‑McCabe. Rudberg MA. 355 A2d 647 (NJ). Accessibility verified July 26. Long‑term outcomes of patients receiving percutaneous endoscopic gastrostomy tubes. 28 Rabeneck L. Accessibility verified July 26. Quill T. 1996. 44 Sudore RL.2D00‑1269. 2005.htm. 272: 1263‑1266. Withdrawing very low‑burden interventions in chronically ill patients. Legal and ethical myths about informed con‑ sent. 1996. 119 (9)
. 284: 2495‑2501. Tube feeding in patients with advanced dementia: a review of the evidence.htm Accessibility verified July 26. 521 US 793 (1997). Available at: http:// www6. 2000: p. 19 Snyder L. Missouri Dept of Health. 33 Pasman HR. Ethical and legal issues in nursing home care. JAMA. 7 Perry JE.miami. Christmas C. Dehydration and the dying patient. McCullough LB. Sussman BL. Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. Glucksberg. The use of living wills at the end of life: a na‑ tional study. Hook CC. January 24.” JAMA. 568 So 2nd 4. Oxford University Press. Clinical Ethics: A Practical Ap‑ proach to Ethical Decisions in Clinical Medicine.