The miracle of modern medicine means death doesn't always occur naturally. At times, it involves a decision, as it did in
the case of Terri Schiavo.
When such a decision doesn't sit well with others involved in a patient's well-being, be they family members or medical staff,
the courts may be called upon to intervene. That's precisely what happened with Schiavo last spring; Nancy Cruzan, 15 years
ago; and Karen Ann Quinlan, almost 30 years ago. All three women were in their 20s when they suffered catastrophic injuries
that put each of them into a persistent vegetative state (PVS). All became the focus of intense publicity as their cases made
their way through the courts, leaving behind lasting legal and ethical implications—and debate that is likely to linger for
years.
There are lessons to be taken from these highly visible and contentious cases, particularly for nurses—who are often at the
center of life-and-death matters that rarely end up in the public arena. It's likely to be a nurse who initially poses the
question, "Is there an advance directive?" It's often the nurse who's responsible for communicating to patients and their
families information that's relevant to end-of-life decisions. It's also the nurse who's caught in the political crossfire
when family members disagree about the course of a patient's care, says Lawrence O. Gostin, JD, an internationally recognized
scholar in law and public health.
A constitutional right to say "enough" The most recent battle arose from a 1990 incident, when Terri Schiavo, then 26, suffered cardiac arrest from extreme hypokalemia.
Her brain was deprived of oxygen for five minutes or more.1 As a result, severe hypoxic-ischemic encephalopathy developed. 2
During the years that followed, she exhibited no evidence of higher cortical function. CT scans of her brain eventually showed
severe atrophy of her cerebral hemispheres, and her EEGs were flat, indicating no functional activity of the cerebral cortex.
Although it was disputed at the time, multiple physicians found her neurologic examinations to be indicative of PVS, detailed.2
(Autopsy results released in mid-June found that Schiavo's brain had withered to half the normal size and that no treatment
could have improved her condition.1)
Unable to eat normally, Terri was kept alive by a percutaneous endoscopic gastronomy (PEG) tube, which became the source of
a bitter court battle. Her husband, Michael Schiavo, wanted it removed, insisting that his wife would not want to live under
such circumstances. Terri's parents, who believed she might one day recover, insisted that the tube feeding continue indefinitely.
After all legal avenues were exhausted, the feeding tube was removed in mid-March for a third and last time. Terri died on
March 31.
By then, what began as a private family feud had made its way not only to the courts, but also to the media, the Florida legislature,
Florida Gov. Jeb Bush, the U.S. Congress, and President Bush. The case reopened issues that many lawyers, bioethicists, and
clinicians believed were long settled—if not since the 1976 N.J. Supreme Court decision in the Quinlan case, then at least
since the 1990 U.S. Supreme Court decision in the Cruzan case.3
The Quinlan case made international headlines when the parents of Karen Ann sought to discontinue their daughter's mechanical
ventilation. Physicians had refused their request because they feared being held civilly or even criminally liable for her
death. The N.J. Supreme Court ruled that competent persons have a right to refuse life-sustaining treatment and that this
right should not be lost when a person becomes incompetent.4
The publicity surrounding the Quinlan case encouraged states to enact "living will" legislation, providing legal immunity
to doctors who honor advance directives specifying how patients would want to be treated if they became incompetent. It also
encouraged hospitals to establish ethics committees to help resolve treatment disputes without going to court.3
Fourteen years later, the "right to die" was broadened when the U.S. Supreme Court decided the Cruzan case. Nancy Cruzan,
like Schiavo, was dependent on tube feeding. However, Cruzan's family was united in believing that she would not want to be
kept alive in such a state indefinitely and requested that the tube be removed. The state of Missouri disagreed, finding that
there was insufficient evidence of Nancy's wishes to support tube removal.
The case eventually went to the nation's top court, which affirmed that surrogate decision makers have the right to refuse
unwanted medical treatment for an incapacitated patient, but also affirmed states' rights to set standards of evidence about
patients' wishes. The court made no legal distinction between tube feeding and other life-sustaining measures. After new evidence
was provided regarding Nancy's wishes, a Missouri court finally authorized removal of the tube.2
In addition to triggering another surge in living wills, the Cruzan case demonstrated the importance of appointing a healthcare
proxy—by way of a legal document that gives a loved one the authority to make decisions for a patient who becomes unable to
do so herself. All states allow this. Most explicitly grant such decision-making authority to a close relative—almost always
to the spouse first—if the patient hasn't officially appointed someone to act on her behalf.3
Nursing's role in preserving dignity Unlike Quinlan and Cruzan, however, the Schiavo case involved a family dispute. With such disagreements, the involvement of
outside experts, including social workers, ethics committees, risk managers, lawyers, and even the courts may be inevitable.
But with each step away from the immediate family, the odds that the patient's wishes will be followed decline and medical
privacy disappears, warns Susan Tolle, MD, director of the Center for Ethics in Health Care at Oregon Health & Science University
in Portland.5
To avoid that possibility, patient advocates have been urging Americans to draft a living will and appoint a healthcare proxy,
with limited success. Fewer than 30% of Americans have an advance directive.6,7 But that may be changing. Because of publicity in the Schiavo case, orders for living wills shot up to an unprecedented 6,000
a day, from fewer than 100, according to Aging With Dignity (www.agingwithdignity.org), a nonprofit group that provides the documents for $5.
"The Schiavo case made it real for everybody," says geriatrician Diane Meier, MD, director of the Hertzberg Palliative Care
Institute at the Mount Sinai School of Medicine in New York. "It became obvious to the American public that advance care planning
is not optional. This could have happened to anyone."
Beyond the heart-wrenching specifics of the Schiavo case, the controversy accompanying it raised alarms for many people about
the role religion and government play in what should be a private matter.6 Nurses and other providers were left wondering where they fit in, too.
The ANA addressed this question in a statement issued shortly after Terri Schiavo's feeding tube was removed. "Nurses are
ethically bound to assist our patients in maintaining control over their lives and to help them preserve their dignity," said
ANA President Barbara A. Blakeney, RN, MS. "The ANA believes it is the responsibility of nurses to facilitate informed decision
making for patients and families who are making choices about end-of-life care."
The ANA's Code of Ethics specifically outlines the nurse's obligation to protect the patient's right to self-determination
and the role of a designated surrogate in situations where the patient lacks the capacity to make decisions himself. (For
more on nursing responsibilities.)
The Patient Self-Determination Act of 1990 requires hospitals, long-term care facilities, and other healthcare entities to
ask patients whether they have an advance directive upon admission—and to provide information about these documents to patients
who don't.8 To ensure that advance directives make their way into the medical record, nurses should ask about them when a patient is
admitted to the unit, as well.
However, it may become necessary for nurses and physicians to do more than merely ask if the piece of paper exists, says Meier,
the geriatrician.
"It's important to do some sleuthing," Meier says. "The critical care nurse speaking with the family shouldn't be the end
of the discussion." Find out if the patient has discussed his wishes with a close friend, for example.
Still, the decision of when to switch from cure to comfort remains a wrenching one. Decisions about life-extending treatments
continue to be fraught with uncertainty and difficulty, particularly when the patient has lost decision-making capacity but
has no advance directive. Families often experience deep conflicts, and nurses may be drawn into disputes.9,10
"Part of the tragedy in Schiavo and in other cases is that families can become so divided that it's harmful to both the patient
and the family," says law scholar Gostin. "What's important here is to have a decent dying process and a decent grieving process.
Nurses play an important role in that because their first and only interest is in the patient.
"Nurses can be the peacemakers in family disputes," Gostin continues. "They are seen as honest, objective, and competent.
They can bring the family to healing and consensus."
Doing good requires that you do your homework In order to assist patients and families confronting end-of-life issues, you must first familiarize yourself with advance
directive laws in your state. The American Bar Association has a state-by-state table available on its Web site at www.abanet.org/aging/update.html.
Keep in mind, though, that advance directives are not foolproof. At least three states—California, Texas, and Virginia—explicitly
permit healthcare institutions to refuse to provide treatment known to be futile, despite the family's wishes or even the
wishes expressed by the patient in an advance directive.10 There is ethical support for these laws, because futile treatment by definition is not beneficial. Therefore, clinicians
are not obligated to provide it, explains Amy Haddad, RN, PhD, RN editorial board member and professor and interim director of the Center for Health Policy and Ethics at Creighton University
in Omaha.
Additionally, although the Supreme Court has upheld a patient's right to refuse medical treatment and food, it is up to states
to decide virtually everything else, including what to do when a patient is unable to speak and whether to make medically
assisted suicide legal, as Oregon did seven years ago.11
If there's a dispute among family members or between the family and healthcare providers, you'll need to know your institution's
policy for resolving such conflicts. This may include requesting a consultation with a social worker, patient advocate, or
the entire healthcare team, or bringing the issue to the hospital ethics committee.3,12
"Nurses are the one voice speaking as advocate for the patient, and that puts them in a position of risk," says Laurie Badzek,
RN, MS, JD, LLM, professor at the West Virginia University School of Nursing and director of the ANA Center for Ethics and
Human Rights. "The risk is that they expose themselves to some personal retribution from the physician or the family who's
asking for treatment, when the patient doesn't want it."
What happens if the conflict involves you—if, for instance, the wishes of the patient or family clash with your personal beliefs?
If that happens, the ANA's Badzek advises that you notify your supervisor as soon as possible.
"You can't develop an objection for one case. You must already have a moral philosophy and that needs to be brought forward
prior to beginning patient care, not after you have begun to care for the patient. You can't put a patient at risk."
Renewed efforts to encourage patients to prepare advance directives and assist those who are interested can enhance autonomy,
Gostin adds. You can point out that having a living will and healthcare proxy is an effective means of avoiding acrimonious
disputes like the one seen in the Schiavo case. At a minimum, advance directives can help clarify misconceptions about the
patient's wishes and values.
Nurses can also recommend counseling, ethics consultation, or mediation as needed, to help families avoid conflict and find
peace. As a patient advocate, seeing that palliative care is offered to dying patients and supporting their desire to live
their final days with a sense of control and without fear of suffering and pain are key.10 If these are the lessons learned from the tragic case of Terri Schiavo, then perhaps the struggle was worth it. RN
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REFERENCES
1. Medical Examiner, District 6, Pasco & Pinellas Counties. "Report of autopsy." 2005. http://news.findlaw.com/nytimes /docs/schiavo/61305autopsyrpt.pdf (24 June 2005).
2. Quill, T. E. (2005). Terri Schiavo—A tragedy compounded. N Engl J Med, 352(16), 1630.
3. Annas, G. J. (2005). "Culture of life" politics at the bedside—The case of Terri Schiavo. N Engl J Med, 352(16), 1710.
4. In re Quinlan, 70 N.J. 10, 355 A2d 647 (N.J. Supreme Court. Mar. 31, 1976).
5. Tolle, S. (2005). A study in what not to do. Modern Healthcare, 35(14), 22.
6. Eisenberg, D. "Lessons of the Schiavo battle." 2005. www.time.com/time/magazine/article/0,9171,1042425,00.html (20 May 2005).
7. Grady, D. (2005, Mar. 29). The best way to keep control: Leave instructions. The New York Times, p. 5.
8. American Bar Association. "Health care advance directives." www.abanet.org/publiced/practical/patient_self_determination_act.html (10 June 2005).
9. The Hastings Center. "Reform efforts in end-of-life care: An appraisal." 2005. www.thehastingscenter.org/pf/news/eoldecadepf htm (19 May 2005).
10. Gostin, L. O. (2005). Ethics, the Constitution, and the dying process: The case of Theresa Marie Schiavo. JAMA, 293(19), 2403.
11. Kornblut, A. (2005, Apr. 1). A next step: Making rules to die by. The New York Times, p. 18.
12. GeronurseOnline.org. "Advance directives." 2005. www .geronurseonline.org/index.cfm?section_id=22&geriatric _topic_id=2&sub_section_id=28&page_id=29&tab=2 (10 June 2005).
How you can help with end-of-life issues As a nurse, you can play a role in helping patients—and families—avoid the kinds of end-of-life battles that the nation witnessed
in the Terri Schiavo case. The following are some key considerations, endorsed by Nurse Competence in Aging, an alliance of
the ANA, the American Nurses Credentialing Center, and the John A. Hartford Foundation Institute for Geriatric Nursing at
New York University:
- Ask all competent adult patients if they have a living will or a designated healthcare proxy. Talk to patients, regardless
of age, gender, religion, socio-economic status, diagnosis, or prognosis, about advance directives and advance care planning—if
they're willing. If necessary, get an interpreter.
- Remember that even patients who have been determined to lack the capacity to make other decisions may still be able to designate
someone they trust to help make their medical decisions—a healthcare proxy.
- Respect the patient's right not to complete an advance directive.
- Reassure patients that you will not abandon them or provide substandard care if they elect to formulate an advance directive.
If the patient has a living will or a healthcare proxy, make sure:
- The document is readily available—with a copy in the medical record.
- The attending physician and other members of the healthcare team are aware of the advance directive and familiar with the
wishes expressed.
- The document has been reviewed recently by the patient, attending physician, and healthcare proxy—and reflects the patient's
current wishes and preferences.
Adapted from: Ramsey, G., & Mitty, E. (2003). Advance directives: Protecting patient's rights. In M. Mezey, T. Fulmer, I.
Abraham, & D. A. Zwicker (Eds.), Geriatric nursing protocols for best practice (2nd ed.) (pp. 265 – 291) New York: Springer Publishing Co.
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A clinical look at PVS The vegetative state is a paradoxical state of "wakeful unresponsiveness," with eyes open but no awareness. The patient has
no language function, exhibits no clinical signs of pain or suffering, and cannot interact with other people, but does have
sleep/wake cycles and a functioning hypothalamus and brain stem, with variable preservation of cranial nerves. When the vegetative
state continues beyond 30 days, it can be described as "persistent."1,2
Unlike brain death, which has clinical determinants including the absence of brain stem reflexes and cerebral motor responses
to pain and is accepted as a legal form of death, a diagnosis of persistent vegetative state (PVS) relies on clinical judgment
and experience rather than objective markers alone.3 What's more, neurologists and rehabilitation specialists have long known that some severely brain-damaged patients are responsive
and sometimes able to track objects and follow simple commands. In 2002, a panel of experts established a new diagnosis on
the basis of these reactions: the minimally conscious state (MCS). Researchers know little about how to draw a person out
of a MCS, which itself can last a lifetime. Patients are considered to have emerged from MCS only when they can consistently
communicate.1,4
Our emerging knowledge about the nature of brain injury and recovery has made it more difficult to decide whether to withdraw
life-sustaining therapy from patients with severe brain injuries. Experts point out, however, that ambiguities disappear when
patients have been unresponsive for very long periods.5
Patients with the kind of injury suffered by Schiavo—caused by anoxia—virtually always remain unresponsive if they have not
regained awareness in the first months after the injury. The window of opportunity for a diagnosis of MCS closes within three
months of oxygen-deprivation brain damage, according to Joseph J. Fins, MD, chief of the medical ethics division of New York-Presbyterian
Hospital/Weill Cornell.4
For patients with PVS, withdrawal of nutrition and hydration generally results in death in about two weeks. For Schiavo—and
others with PVS—research has shown that the potential for pain or discomfort is nonexistent because higher functions, including
consciousness and the ability to feel pleasure or pain, were destroyed years ago when she suffered the prolonged loss of oxygen
to her brain.4
Sources:
1. Fins, J. J. (2005). Rethinking disorders of consciousness: New research and its implications. Hastings Center Report, 35(2), 22.
2. The vegetative state: Differential diagnosis and treatment issues. (2005, May 11). NTI News, p. 9.
3. Jacqueline Sullivan, J., Seem, D. L., & Chabalewski, F. "Determining brain death." 1999. www.aacn.org/aacn/jrnlccn.nsf/0/5ebf8de743ead0fa8825674e005a8950?OpenDocument (10 June 2005).
4. Schwartz, J. (2005, Mar. 25). Neither starvation nor the suffering it connotes applies to Schiavo, doctors say. TheNew York Times. p. 14. 5. Vedantam, S., & Weiss, R. (2005, Mar. 22). Medical, ethical questions largely decided, experts say. TheWashington Post. p. A6.
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