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The Right to Decide

From the Children’s Hospital Medical Center of Akron and the Rainbow Center for Pediatric Ethics at Rainbow Babies and Children’s Hospital of University Hospitals of Cleveland, Cleveland, OH.

Address reprint requests to Sarah Friebert, MD, Department of Pediatric Hematology/Oncology, Children’s Hospital Medical Center of Akron, One Perkins Square, Akron, OH 44308; email: sfriebert@ chmca.org.

HERE’S THE CASE

"SHELLEY" WAS A 19-year-old with a stage III yolk sac tumor of the ovary, metastatic to the liver at presentation. Shortly after learning of her diagnosis, she filled out a living will indicating that she wished no life-prolonging treatment (including mechanical ventilation or cardiopulmonary resuscitation) be performed if she became unable to make decisions and if her disease course changed such that the burdens of therapy outweighed the potential benefits. She also appointed her stepmother as her durable power of attorney for health care (DPOA-HC). Her stepmother agreed (at the patient’s request) to assume custody of Shelley’s 15-month-old son if she did not survive her illness.

Shelley lived at home with her son, father, stepmother, and boyfriend. When she began chemotherapy, Shelley was well aware that the potential for curing her tumor was high. However, she frequently expressed the opinion that treatment, in and of itself, was difficult. Every time she needed to return to the hospital, whether for chemotherapy or for an acute medical situation, she resisted. Her stepmother felt as though she was forcing Shelley to undergo therapy. This situation created much guilt for the stepmother and escalated tensions within the household.

Shelley received several cycles of chemotherapy, during which she experienced multiple complications. In addition to several hospitalizations for fever and neutropenia, she gained a tremendous amount of weight, to the point that she became unrecognizable as her former self to her family. She experienced profound fatigue and was frequently unable to get out of bed to participate in her own activities of daily living or to care for her child. Shelley felt that her own quality of life was unacceptably low, and she repeatedly verbalized this to her family and the hospital staff.

After 3 months of treatment, Shelley was admitted to the hospital with fever and pancytopenia. A workup revealed methicillin-resistant Staphylococcus aureus sepsis and pneumonia. Despite appropriate antibiotic and fluid therapy, her condition deteriorated. She developed respiratory failure secondary to infection. In the opinion of her medical team, she required mechanical ventilation for continued survival. At that time (before mechanical ventilation was initiated), she refused any further medical therapy and expressed the desire to return home to die, saying she had endured enough treatment and suffering.

When Shelley’s condition deteriorated, her family requested hospice services and a hospital social worker made the referral. One month earlier, the hospice agency had been contacted by an emergency room staff member who knew Shelley from several visits and felt that the family was experiencing a tremendous amount of stress. At that point, the hospice had not become involved because the medical oncologist stated that Shelley was not terminally ill and should survive her disease with appropriate treatment. With the second referral, however, the hospice program admitted her on the basis of the family’s request. The terminal diagnosis was "sepsis," with the patient expected to live less than 6 months. The medical oncologist then gave a verbal order for hospice consultation.

The hospice team made an emergency afternoon visit to the intensive care unit (ICU) within several hours of the referral. The medical oncologist and the ICU physician had both been speaking with Shelley and her family throughout that day, trying to secure informed consent for intubation and mechanical ventilation. Because the tumor had responded to therapy, they felt that her prognosis was good if she could survive this event. They had consulted a psychiatrist the previous day for an evaluation of the patient’s decision-making capacity, when it appeared likely that her clinical status would deteriorate. The evaluating psychiatrist concluded that the patient was lucid (and was not confused or impaired because of hypoxia or drugs), was of normal mental status, was not clinically depressed, was not suicidal, and was able to comprehend the consequences of her decision. Shelley’s extended family, including an aunt who was a registered nurse at a neighboring hospital, were in total agreement with her wishes and supported her desire to return home. They fully understood that she would die without further treatment, but felt that she had "been through enough" and deserved to decide for herself that "enough is enough." Shelley’s stepmother was distraught over Shelley’s decision to discontinue treatment, but she felt obligated to uphold her agreement as DPOA-HC and to honor Shelley’s wishes.

The specific goal of the hospice referral was to facilitate Shelley’s discharge home. On arrival, the hospice team (medical director and social worker) met with the family and discussed the situation. They then spent time with Shelley and determined that this was her authentic decision. They ascertained that she fully understood that she would likely die within a short period if she were to leave the ICU and that she was not making this decision out of suicidal intent or under any coercion. Although she was requiring high concentrations of oxygen, she was not hypoxic and her comprehension of the relevant clinical issues was complete. She knew that there was a risk she would die en route to her home, but declined an offer to have her son brought to the hospital before her discharge so that she could be sure of seeing him one final time.

The hospice team then spoke with the ICU physician and with Shelley’s medical oncologist by telephone. Both physicians expressed extreme discomfort with the proposed plan of care, citing the patient’s youth and the young age of her child as reasons that her decision should not be honored. They felt that her underlying disease was curable, that the hospice team should attempt to persuade Shelley to continue with intensive treatment, and that "things would work out fine in the end." They suggested that the hospice team was overstepping its bounds and that the patient should be sedated and intubated if she would not agree to intensive treatment. Finally, they insisted that the only acceptable form of discharge would be for Shelley to sign herself out of the hospital against medical advice.

In an attempt to resolve the impasse and avoid escalation of this conflict, the hospice team spent several hours in the ICU in conversation with the involved parties. The hospice team reinforced that this was an adult patient who had the right to make decisions about her own medical treatment. They emphasized that there was no evidence that Shelley was cognitively or developmentally impaired to the degree that her decision-making rights should be abrogated and that she had taken the appropriate steps to document the authenticity of her decision (DPOA-HC and living will). A second psychiatric consultation was obtained that afternoon, and the results were identical with the first report. The nursing and social work staff, while not necessarily in agreement with Shelley’s decision, were clearly in support of her right to choose her own course of action.

The ICU physician made several more attempts to change Shelley’s mind. At one particularly intense moment, the physician raised his voice and declared that Shelley had no right to deprive her young son of his mother. This action seemed to escalate the turmoil for the staff, the family, and the patient. The family’s agitation progressed to the point that they threatened to contact an attorney or simply to carry the patient out of the hospital themselves. The ICU physician attempted to prevent these possibilities through further telephone conversation with the medical oncologist.

Throughout the afternoon, the hospice team consistently supported its commitment to this adult patient’s right to choose. They reinforced the notion that although professional caregivers may disagree with the decisions that individuals or surrogates make, the principle of respect for persons supports the right of individuals to make autonomous decisions unless those decisions are directly harmful to others. To facilitate an accord, the hospice physician and the medical oncologist requested an emergency ethics committee meeting. However, the ICU physician deemed that this would be unnecessary and stated that the committee would abide by whatever was decided by the parties present.

The legal counsel for the hospital was contacted and agreed with the hospice team’s position. Specifically, they affirmed that a capable adult was making a decision weighing the benefits and burdens of her own health care and that this decision should be respected as determinative in this case. An agreement was reached whereby the care of the patient was transferred to the hospice physician, who was granted emergency privileges at the hospital.

As soon as care was transferred, the patient’s total parenteral nutrition, transfusion support, dopamine drip, and intravenous hydration were discontinued. Shelley was given morphine and lorazepam for comfort, and ambulance transport was arranged. She was discharged and returned home. A hospice nurse met the patient and family at home to ensure that comfort care would continue. Over the next 48 hours, Shelley was kept comfortable at home and enjoyed the company of her family and son. She gradually became less responsive and died peacefully at home approximately 52 hours after her discharge from the hospital.

After Shelley left the hospital, the medical oncologist arrived in the ICU to attempt to stop the transport. When this physician realized it was too late, he confronted the hospice team, stating the belief that it was the hospice medical director’s "duty as a physician" to talk Shelley out of her decision. The medical oncologist also stated emphatically that he would have intubated the patient without consent had he arrived in time.

POSTSCRIPT
Three weeks after Shelley’s death, her 15-month-old son was admitted to a nearby children’s hospital, where a malignant tumor was diagnosed. The hospice team was immediately contacted to help the family cope with this devastating situation. Shelley’s stepmother was clearly traumatized and was initially unwilling to permit the child to undergo any radiation or chemotherapy. What made this series of events particularly haunting was that the family received essentially the same information about the new diagnosis as they had about Shelley’s. Specifically, they were told that the child had a highly curable tumor and that young people tolerate chemotherapy and radiation far better than do older patients. The family was not comforted by this information, as they had heard exactly the same story at Shelley’s diagnosis. This time, however, in the case of a young child with a curable disease, unable to consent or even assent to his own treatment decisions, the hospice team reinforced that there really was no choice: the child would need to receive appropriate therapy. Through the support of the hospice and pediatric oncology teams working together, the stepmother and family were able to understand the differences between the two situations, verbalize their fears, and agree to the recommended medical treatment.

DISCUSSION

This case raises several important issues. First, the patient is unusual in that she executed a living will and DPOA-HC at the time of diagnosis. These two actions, which are both forms of advance directives, suggest that Shelley gave considerable thought to the possibility of her own mortality early in the course of her illness. The living will and DPOA-HC are not mutually exclusive, although it is unusual for young patients to have even one form of advance directive.¹ That this patient had both a living will and DPOA-HC strongly supports the conclusion that her refusal to permit intubation should be respected. Regardless of prognosis, oncologists should seek guidance from patients about their wishes for resuscitation and end-of-life care, in order that patients receive care that is consistent with their own values and wishes. Because doctors and patients are human, they generally prefer to avoid difficult discussions and delay conversations that are emotionally charged. Early discussions of advance directives provide an excellent mechanism to foster these difficult exchanges and can provide clear documentation of prior wishes when a patient is later in extremis. In this sense, Shelley was exemplary for her willingness to confront end-of-life decision-making and express her authority to make decisions.

Next, this case highlights the difference between the rights of a minor and those of a competent adult over the age of 18 who is empowered to consent to or refuse treatment for any medical condition, regardless of the percentages or odds of cure. Although caregivers may disagree with patient decisions, each person is entitled to make an individual assessment, from his or her own perspective, of the risks and benefits inherent in any disease or treatment process. Many patients pursue treatment of conditions considered incurable; for these people the choice to pursue treatment and suffer the associated consequences is worthwhile, because of their need to "leave no stone unturned" in the quest for a cure. Such patients often participate as subjects in phase I oncology clinical trials.² Other patients define quality of life differently and would draw the line between cure and comfort at another place. In the case presented here, although the cure rate for her ovarian tumor was somewhere between 75% and 90% with intensive treatment, Shelley decided that in her case the burdens of cancer treatment were not outweighed by the potential benefits. While each person can try to imagine what percentage chance for cure would justify burdensome medical treatment for himself or herself, such efforts at the use of moral imagination have limits. Until faced with the clinical and emotional context of a particular decision, it is difficult to predict the choice that one would make. Because of this, an ethical focus on who gets to make the decision takes precedence over attention to the question of what decision is best for competent adults. In pediatric ethics, the converse is true and a best-interests decision was made on behalf of Shelley’s 15-month-old son.

Another important aspect of this case is the degree to which personal beliefs and value systems influence physician judgment. Shelley’s professional caregivers, who did not agree with her decision, readily cited their discomfort with her status as a young mother who was choosing to "abandon" her child. Repeated references to daughters or other family members of nearly the same age pointed out how difficult it was to imagine one of their own in this situation, a clinical hazard of the countertransference tendency. Characteristic of "paternalism," feelings such as these are clearly motivated by a desire to protect someone who is seen as young and vulnerable, someone who reminds clinicians of their own children, grandchildren, nieces or nephews, sisters, or brothers. Beneficent paternalism has its limits. Clinicians must not confuse perceived youth with the legal or ethical definition of competency: at age 18, patients become legally competent to make their own health care decisions, unless there are extenuating circumstances such as mental illness and severely impaired judgment. This right applies even earlier for some younger patients—"emancipated minors" are those who, through early parenthood, military service, or legal emancipation from parents are presumed to be competent before age 18. Thus, even if Shelley had not been 19 years of age, she might have been presumed competent because of her status as a mother.

Respect for persons is among the highest values involved in the ethical practice of medicine. Fortunately, tough cases such as Shelley’s are relatively infrequent, but it is precisely these experiences that test the professionalism of involved clinicians. Although it may be extraordinarily difficult, professionals must be compelled by ethical duty to apply these principles consistently and fairly, regardless of whether or not the decision being made is one with which the clinician agrees. Professionalism requires that clinicians respect the subtle but important distinction between persuasion and coercion. Clinicians do have an ethical obligation to recommend a course of action and can legitimately use their clinical skills to persuade patients that the recommendation is in their own best interests. But patients and families deserve support through the decision-making process, and clinicians must also recognize the limits of their own authority. Shelley had shown consistency over time in her choices, set forth a living will, identified a DPOA-HC, made arrangements for ongoing care of her child, and decided for herself that the burdens of her disease and treatment outweighed the potential benefits.

This is not to suggest that such support does not come at a cost to the professional caregiver. Physicians are under no obligation to act in ways they find personally objectionable, or outside of their own personal ethical beliefs. Indeed, cases such as these may present a genuine moral difficulty as providers struggle to reconcile personal beliefs with professional duty. Personal disagreement with Shelley’s decision is understandable here; strong arguments were made in opposition to her choice. In such cases, clinicians should remove themselves from situations they find ethically untenable and arrange for a transfer of care so that patients and families are not abandoned at their time of greatest need. Clinicians should remember that the services of a hospice team or palliative care service can often help to facilitate difficult transitions when the goals of treatment change.

ACKNOWLEDGMENTS

E.K. is supported by grants from the Greenwall Foundation and the Rainbow Babies and Children’s Hospital Board of Trustees.

We thank David Freyer, MD, Joanne Hilden, MD, and Mary Kay Tyler, PNP, for their careful review of the manuscript. We are also indebted to Shelley’s family for graciously allowing her story to be told.

REFERENCES

1. Annas GJ: The health care proxy and the living will. N Engl J Med 324: 1210-1213, 1991[Medline]

2. Daugherty C, Ratain MJ, Grochowski E, et al: Perceptions of cancer patients and their physicians involved in phase I trials. J Clin Oncol 13: 1062-1072, 1995[Abstract]

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This Article Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Friebert, S. Articles by Kodish, E. Search for Related Content PubMed PubMed Citation Articles by Friebert, S. Articles by Kodish, E. Social Bookmarking                            What's this?