Margaret was a patient with end stage lung disease and had been in the intensive care unit (ICU) several times. One day Margaret was once again admitted with an exacerbation of her chronic obstructive pulmonary disease (COPD) and intubated. Multiple attempts were made to wean her off the ventilator over a period of days. Each attempt to wean resulted in tachypnea, tachycardia, and severely decreased oxygen levels. Her physicians told her that they planned to do a tracheostomy and move her to a long-term care facility that managed patients on ventilators. Margaret was completely alert and competent during this time and was able to communicate with the staff. She asked her physicians if she would ever be weaned. They told her that the chances of that happening were very slim but that they could keep her alive on the ventilator. No one had ever discussed with Margaret what she would want to do if she were unable to be weaned from the ventilator. This article tells of Margaret’s struggle, and the struggle of her nurses to help her die as she wished. Margaret changed the way an entire unit felt about the practice of nursing, about dying, and about living.
QUANTITY VERSUS QUALITY OF LIFE
Margaret wrote that she wanted to come off the ventilator and be allowed to die. Her physician refused to consider this option. Her family was horrified. They could not understand why she would want to die when technology was available that would allow her to live. But to Margaret, this was not living. The technology that would enable her to live longer would not provide her with an acceptable quality of life. Being attached to a machine, unable to move, unable to enjoy the things she had always enjoyed, and knowing that her outcome was going to be death whether she remained on the ventilator or not was not an acceptable alternative for Margaret. She did not want to lose her identity and become unaware at the end of her life. To the Dutch, this is called “entluisterung” or “that gradual effacement and loss of personal identity that characterizes the end stages of many terminal illnesses.”1 She simply wanted to be removed from the ventilator and allowed to die.
The nursing staff discussed her wishes, and it was evident that Margaret was aware of her options and was competent and able to make an informed decision. Her family also discussed the situation with the staff, and they stated they simply would not allow it to happen. If means were available to keep Margaret alive, they wanted her to live as long as possible. The physician supported the family in their decision. As patient advocates, the staff felt it was their duty to support Margaret and respect her autonomy.
Decisions surrounding end-of-life care, particularly those concerning withdrawal of treatment are important issues for nurses. Sixty percent of deaths in the United States occur in hospitals and of that 60%, 75% occur after decision to forgo treatment. 2 Almost all nurses will face these types of issues at some point in their practice.
Many years ago, death was looked upon as a natural part of life, and most people died at home surrounded by loved ones. Now, “rather than being a natural life event, death is a disease to be treated and conquered”. 3 As stated by Hayden, “medical technology has so ‘improved’ life-sustaining efforts that it’s almost impossible for a patient to meet death without becoming the subject of a discussion about ‘extraordinary measures’”. 4 Sometimes it is hard for the nurse to know whether they are assisting in extending the patient’s life or merely delaying the patient’s death. With the use of technology, death sometimes “appears to be the result of a human decision rather than a natural, inevitable event”. 3 Technological advances have exceeded our ability to analyze the ethical dilemmas associated with them.
On the surface, it seems a simple thing to respect patient autonomy. After all, we all would hope that we would have control over our lives and that our wishes would be respected. However, surveys of physicians have reported that one-third have refused requests by patients for care limitations, thereby ignoring patient autonomy. 5
In identifying a situation as an ethical dilemma, certain criteria must be met. More than one solution must exist. There is no clear “right” or “wrong.” Each solution must carry equal weight. In addition, each solution must be ethically defensible. Certainly, in this case, there was more than one solution to the situation. Margaret, of course, wanted to be removed from the ventilator. The family and physician wanted her to get a tracheostomy and be transferred to a long-term care facility for the remainder of her life. Both solutions carried equal weight in that, on the one hand, a patient’s wishes were to be honored and, on the other hand, a life was to be prolonged. Both solutions were ethically defensible. To honor Margaret’s request was to respect patient autonomy. To honor her family’s request was to honor the sanctity of life. There certainly seemed to be a dilemma in that the patient’s wishes were in opposition to the wishes of her family and physicians. However, the nursing staff felt there was only one thing to do—honor Margaret’s autonomy.
FOUR ETHICAL PRINCIPLES
To resolve ethical issues, we must understand some of the basic ethical principles regarding withdrawal of treatment. The four principles to be discussed are autonomy, nonmaleficence, beneficence, and fidelity. These four principles can help guide decisions in cases such as Margaret’s.
Autonomy is derived from the Greek autos (self) and nomos (rule or governance). 6 Therefore, if someone has autonomy, he or she has freedom of choice or free will. To respect the autonomy of others means to respect their freedom of choice and to allow them to make their own decisions. This is also known as self-determination. The principle of autonomy is fundamental when discussing issues regarding patient decision making. In our society, we generally expect that individual autonomy will be respected and that we may conduct our lives as we see fit as long as our actions are not illegal. In the case of Margaret, we knew her choice. To respect her autonomy would necessitate that we remove her from the ventilator.
Nonmaleficence, according to Beauchamp and Childress, “asserts an obligation not to inflict harm intentionally” and includes “the prevention of harm and the removal of harmful conditions.”6 Controversy exists regarding the principle of nonmaleficence in cases of withdrawal of treatment from individuals, even at their request. The controversy is, just what is harm? Some feel that removing a patient from a ventilator and allowing him or her to die would constitute intentional infliction of harm. Others argue that keeping a patient on a ventilator against his or her will, thus prolonging death, is the intentional infliction of harm. It is primarily this principle that created the ethical dilemma surrounding Margaret.
Beneficence requires the provision of benefits. 6 We can provide benefit by offering treatment or by removing harmful treatment. Margaret’s family and physician believed that they were providing benefit to Margaret by maintaining her mechanical ventilation and keeping her alive. We could argue that refusing to respect Margaret’s treatment preference is medical paternalistic behavior. From Margaret’s point of view, beneficence would require moving her from mechanical ventilation because she considered this treatment harmful.
The concept of fidelity can be defined as an “obligation to live up to the patient’s reasonable expectations and trust.”6 The question to ask in this case was, “Are we living up to the trust that Margaret has in us?” Most patients trust their healthcare providers to do what is best for them and to respect their decisions. In Margaret’s view, her physician was not living up to the principle of fidelity.
Before beginning examination of an ethical dilemma, it is helpful to look at different philosophical perspectives and ethical principles. This section briefly discusses utilitarianism and deontology as they concern Margaret’s case.
Utilitarianism is a consequence-based theory with its origins derived from Jeremy Bentham (1748–1832) and John Stuart Mill (1806–1873). Utilitarianism can be defined as “the right act in any circumstance is the one that produces the best overall result, as determined from an impersonal perspective that gives equal weight to the interests of each affected party.”6 Utilitarians believe that it is the consequences that count, not intention or desires. 7 In Margaret’s case, a utilitarian view would place importance on quality of life. In cases such as this, “the principles of beneficence and nonmaleficence may lead to an abatement of medical treatment in order that the patient may be allowed to die with dignity.”8
Deontology is an obligation-based theory based on the writings of Immanuel Kant (1724–1804). This ethical theory states “some features of actions other than, or in addition to, consequences make actions right or wrong.”6 In other words, “one must never act wrongly in order to bring about good consequences, or, the ends do not justify the means.”9 Therefore, if one holds a deontological perspective, the sanctity of life would be of primary importance, and Margaret would remain on the ventilator. This view considers the “principle of beneficence to preserve life at all costs and the ultimate good is the preservation of life.”8
Utilitarianism and deontology present different views and can be interpreted differently based on the individual’s perspective. Although they do not solve ethical dilemmas, they do provide a framework for making ethical decisions. Using these theories and ethical principles, one can take a more detailed look at Margaret’s case.
Analysis of an ethical dilemma requires that certain elements be addressed in order to achieve resolution. Several models are discussed in the literature. The discussion regarding Margaret is based on the model presented in Clinical Ethics.10 Questions in four areas are addressed using this model: 1) medical indications; 2) patient preferences; 3) quality of life; and 4) contextual features. Jonsen suggests that it is necessary to review each of these topics “in order to see how the principles and the circumstances together define the ethical problem in the case and suggest a resolution.”10
This topic answers questions related to the “pathophysiology presented by the patient and the diagnostic and therapeutic interventions that are appropriate to evaluate and treat the problem.”10 We knew that Margaret had end-stage COPD with a poor prognosis. Without mechanical ventilation, she would be unable to breathe on her own. With mechanical ventilation, she could continue to live for a period of time, most likely a short period of time, but her ultimate outcome would be the same. We also knew that her condition was not curable or reversible despite any treatment available. A major question that needed to be answered in this case was, “What are the goals of treatment?” This seemed to a major issue. For Margaret, the goal of treatment (receiving mechanical ventilation) would be to recover from the exacerbation of COPD, be weaned from the ventilator, and return home. For the family and physician, the goal of treatment (receiving mechanical ventilation) seemed to be to prolong life, or to delay death and was viewed by them as a beneficent treatment. Margaret considered mechanical ventilation as harmful, or nonmaleficent. For her, the goal of treatment had not been met and was not likely to be met by continued mechanical ventilation.
Patient preferences are “based on the patient’s own values and personal assessment of benefits and burdens,”10 In this case, we were fortunate that Margaret was a competent and informed patient who was able to clearly articulate her desires. She was adamant in her wish to be removed from the ventilator and allowed to die. She had been informed of the risks involved and understood them. To abide by her wishes would be both legal and ethical. It would also honor her autonomy.
QUALITY OF LIFE
When considering quality of life, we must be careful not to impose our own value system on that of the patient. Each individual has a set of personal values that are influenced by his or her environment and culture. Nurses also have a set of professional values. In this case, because the family and physician believed that any life at all was preferable to death, then they ran the risk of imposing their values on the patient. It was just such differing values that caused conflict in this case. From Margaret’s viewpoint, she had no quality of life on the ventilator. She understood that with, or without treatment, she would never return to a normal life.
We must examine whether there are family issues that could influence treatment decisions. This was certainly true in Margaret’s case. The family was influencing treatment decisions, and going against the wishes of the patient by refusing to allow their mother to be removed from the ventilator. They did not care what her wishes were. They did not want their mother to die. They did not want to feel responsible for her death.
The physician was also dealing with issues of his own. He felt his job was to save lives and that to discontinue the ventilator would be giving up and “accepting defeat,” thus, causing Margaret’s death. He was also heavily influenced by the family and was fearful of a lawsuit.
Other factors to be considered under contextual features include financial and/or religious factors. These were not issues in this case. Another factor under consideration must be legal implications. We will discuss legal issues in another section.
Utilizing this case analysis model, we can arrive at the following conclusions regarding Margaret. First, Margaret had end-stage COPD that was neither curable nor reversible. Two, Margaret was competent and had been informed of the risks of refusing treatment; she continued to express her desire to be removed from the ventilator. Three, Margaret did not feel that she would have an acceptable quality of life if mechanical ventilation was continued. Four, Margaret wanted to be assured that medications would be available to keep her comfortable after extubation. Five, the family did not want their mother to die and wanted her kept alive by any means available. Six, the physician refused to accept the “failure” of letting Margaret die and was concerned that the family would file a lawsuit if the ventilator was removed.
It is clear from this discussion that there was one decision to be made. Should Margaret’s autonomy be respected and she be removed from the ventilator; or should the wishes of the family and physician be honored, thereby keeping Margaret on the ventilator? When looking at these options, we must ask what the consequences would be for all parties. If Margaret is removed from the ventilator, she will likely die within a short period of time. This is an acceptable option for Margaret. She feels that she will go to her “reward” and be reunited with her husband. She finds life attached to a machine unacceptable. If the second option is selected, to abide by the wishes of the family, Margaret will receive a tracheostomy and be transferred to a long-term care facility. She could perhaps live for a few months in this condition. The family would be able to visit Margaret. We cannot know if Margaret would welcome her family’s visits or resent that they have not allowed her to choose the manner in which she wanted to die. In addition, we do know that Margaret’s illness will lead to her death and that she will be unable to go home and resume a normal life.
These are the issues that ultimately were presented to and discussed with the family by Margaret’s minister and the staff. The minister had known Margaret and her family for many years. He spent hours with the family helping them deal with their feelings about death and the dying process. They also discussed some of the family members’ feelings that to remove Margaret from the ventilator would be the same as killing her.
After examining the ethical principles, we can briefly review the legal implications of withdrawing mechanical ventilation. Many nurses and physicians feel more comfortable withholding treatment than withdrawing treatment. However, there is no ethical distinction between the two. Beauchamp suggests that healthcare professionals are uncomfortable withdrawing treatment because they feel responsible for the patient’s death. 6 He also states that physicians feel that when treatment is started, they have an obligation to the patient to continue that treatment. He summarizes this issue by saying “the appropriate expectation is that caregivers will act in accordance with the patient’s best interests and wishes” and that withholding and withdrawing treatment are indistinguishable. 6 In addition, the courts have found no legal distinction between withholding and withdrawing treatment. 11 In 1990, the Supreme Court, in its landmark Cruzan decision, upheld the right of competent patients to refuse life-sustaining treatments. 12 The Patient Self-Determination Act, passed as part of the Omnibus Budget Reconciliation Act of 1990, “requires that all individuals receiving medical care must be given written information about their rights under state law to make decisions about medical care, including the right to accept or refuse medical treatment.”13 This gives the patient the right not only to refuse a treatment initially, but also to refuse treatment at any time during the course of care.
According to the President’s Commission Report on “Deciding to Forego Life Sustaining Treatment” published in 1983, “the voluntary choice of a competent and informed patient should determine whether or not life-sustaining therapy will be undertaken.”14
Nurses are bound by their Professional Code of Ethics. The Code of Ethics serves the following purposes: “1) It delineates the ethical obligations and duties of nurses; 2) It is the profession’s non-negotiable ethical standard; and 3) It is an expression of nursing’s own understanding of its commitment to society.”15 The Code of Ethics addresses several areas applicable in Margaret’s case, including the right to self-determination, primacy of the patient’s interests, collaboration, and professional boundaries. In addition, the American Nurses Association (ANA) has published several position statements that can assist in decision making when ethical dilemmas exist. In addition to those already mentioned, the ANA has issued a position statement on active euthanasia. It is stated that “honoring the refusal of treatments that a patient does not desire, that are disproportionately burdensome to the patient, or that will not benefit the patient can be ethically and legally permissible.”16 The ANA goes further to state, “there is no ethical or legal distinction between withholding or withdrawing treatments.”16
As nurses, we are humbled to be able to assist in the dying process with patients and their families. Rousseau stated, “to care for a dying person is an honor and privilege afforded few in our society.”17 Nurses are in a unique position as patient advocates to assist patients and their families through the process of death. After all, the “biomedicalization of death has deprived families of the opportunity to weave a tapestry of meaning around this event of death.”3
After discussion and collaboration with all members of the team (which included Margaret and her family), mechanical ventilation was discontinued, and Margaret died a peaceful death later that same day with her family at her bedside. She left the staff a stuffed bunny to remember her by. Our staff did not need a bunny to remind us of Margaret—we will never forget her—we need the bunny to remind ourselves why we became nurses.
1. Mappes TA, DeGrazia D. Biomedical Ethics
, 4th ed. New York: McGraw-Hill; 1996.
2. Faber-Langendoen K, Lanken PN. Dying patients in the intensive care unit: Forgoing treatment, maintaining care. Ann Intern Med. 2000; 133( 11):886–893.
3. Miller PA, Forbes S, Boyle DK. End-of-life care in the intensive care unit: A challenge for nurses. Am J Crit Care. 2001; 10( 4):230–240.
4. Hayden LA. Helping patients with end-of-life decisions. Am J Nurs. 1999; 99( 4): 24BB–24EE.
5. Dalinis P, Henkelman WJ. Withdrawal of treatment: Ethical issues. Nurs Manag. 1996; 27( 9):32AA–36AA.
6. Beauchamp TL, Childress JF. Principles of Biomedical Ethics
, 4th ed. New York: Oxford University Press; 1994.
7. Volbrecht RM. Nursing Ethics: Communities in Dialogue.
Upper Saddle River, NJ: Prentice-Hall; 2002.
8. Trnobranski PH. The decision to prolong life: Ethical perspectives of a clinical dilemma. J Clin Nurs. 1996; 5( 4):233–240.
9. Arras JD, Steinbock B. Ethical Issues in Modern Medicine
, 5th ed. Mountain View, Calif: Mayfield Publishing Co; 1999.
10. Jonsen AR, Siegler M, & Winslade WJ. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine
, 4th ed. New York: McGraw-Hill Health Professions Division; 1998.
11. Gostin LO. Deciding life and death in the courtroom: From Quinlan to Cruzan, Glucksberg, and Vacco–A brief history and analysis of constitutional protection of the “right to die.” JAMA. 1997; 278( 18):1523–1528.
12. Wolfe S. When is it time to die? RN. 1998; 61( 11):48–59.
13. American Nurses Association. Position Statements: Nursing and the Patient Self-determination Acts.
(1991, November 18). Available at: http://www.nursingworld.org/readroom/position/ethics/etsdet.htm
. Accessed March 5, 2002.
14. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983). President’s Commission Report on “Deciding to Forgo Life Sustaining Treatment.”
Available at: http://imc.gsm.com/demos/dddemo/consult/presdent.htm
. Accessed January 31, 2002.
15. American Nurses Association. Code of Ethics for Nurses.
Washington, DC: American Nurses Publishing; 2001.
16. American Nurses Association Position Statements: Active Euthanasia.
1991. Available at: http://www.nursingworld.org/readroom/position/ethics/eteuth.htm
. Accessed January 30, 2002.
17. Rousseau P. The ethical validity and clinical experience of palliative sedation. Mayo Clin Proc. 2000; 75( 10):1064–1072.