Editor's Note: The following consultation report is based on a real clinical dilemma that led to a request for an ethics consultation. Some details have been changed to preserve patient privacy. The goal of this column is to address ethical dilemmas faced by patients, families and healthcare professionals, offering careful analysis and recommendations that are consistent with biblical standards. The format and length are intended to simulate an actual consultation report that might appear in a clinical record and are not intended to be an exhaustive discussion of the issues raised. In this case, analysis and recommendations were sought from two ethics consultants.
Dorthea is a 69-year-old woman who was well and active until about five years ago when she developed diabetes. She was admitted to the hospital 18 months ago with recurrent fainting and was found to have an intermittent transient heart block.[1] She reluctantly consented to insertion of a permanent pacemaker.
Three months ago her kidney function was found to be diminished to about 10% of normal, probably caused by her diabetes. It was expected that she would soon require dialysis. However, her kidney function has since improved so that dialysis will not likely be needed for some time. She has since said she would refuse dialysis even if it were needed, and she has refused treatment of her profound anemia. She did consent to a colonoscopy last month to see if she had cancer (malignant change was found in one small area, presumably cured). She is now asking that her pacemaker be turned off so that she can die.
The ethics consultant met with the patient and two of her daughters. Dorthea says she wants to die now because (a) she misses her husband who died three years ago after 45 years of marriage; they were very close, did everything together, and she says she can’t live without him; (b) she can’t stand to live in their home (memories), but refuses to move; and (c) she wants to “set her children free.” She has resisted attempts by her three daughters who have encouraged treatment, including grief counseling, and have even offered for her to live with them. She has guns in her home and knows how to use them, but she says she is unwilling to take her own life. She is an inactive Methodist. She says her only pleasure is having her children, grandchildren and great-grandchildren visit, but she feels her misery is also making them miserable.
The patient says she was told when the pacemaker was inserted that it could be shut off whenever she didn’t want it. It is her impression that she will die quickly without it, however, her cardiologist expects this would not be the case. Though she demonstrates no intrinsic rhythm when the rate of the pacer is turned down to 30 beats/minute on testing, most patients do develop some rhythm after several seconds of not beating at all. Thus she might not die, but could suffer symptoms of congestive heart failure with an unknown outcome. She says she is miserable, is not eating (though her weight is down only 5-10 pounds), and cannot care for herself or her home, but she doesn’t want treatment for her anemia or her grief. When asked, she said she did not have the colonoscopy last month in order to protect her life. The only reason she consented to the procedure was that she hoped it would show she had cancer that would end her life.
Her daughters have run out of ideas for helping her, and are now supportive of her request. They believe “she wants quality of life over quantity of life,” but they recognize that she is refusing treatment which could enhance her quality. They realize she has not dealt with her grief, but are convinced that she never will.
The patient’s primary care physician requests an ethics consultant to address the question of whether this patient’s pacemaker may be shut off.
This 69-year-old patient is dealing with many of the issues impacting chronic illness in our current health care system—a medical organization that has much to offer, variability in function of the organ systems as the body ages, the profound loss of a loved one, ambivalence, indecision, and depression. In addition the patient apparently has a supportive family structure that offers appropriate care and assistance as well as joy. However, as is common with many elderly patients with chronic illness, this patient does not wish to be a burden to her family.
A patient is generally allowed to make her own treatment decisions if she appears to have 1) knowledge of the medical issues, 2) decisional capacity to make a healthcare decision, and 3) the ability to make a decision without coercion. With respect to her decisional capacity, the family and physicians need to be assured that Dorthea understands (and can express her understanding of) the medical situation, and that she is able to weigh the various aspects of the decision to be made. In the current situation, the patient appears to satisfy these criteria, though it is not yet clear whether she understands the outcome of stopping the pacemaker. It is reasonable to assume that she understands that refusal of dialysis (if needed) and refusal of blood transfusions (which would probably improve her well-being) will ultimately lead to a terminal event.
Since pain and mental illness can significantly affect decisional capacity, it is imperative that these issues be addressed in any patient. In this case, whereas the issue of depression may not be adequately treated from a medical and psychiatric perspective, it has certainly been appropriately addressed from a family and social perspective. Furthermore, the family is clearly attempting to offer the patient care and concern in addition to allowing her to engage in medical decision-making that is free from coercion. There is some question whether she was coerced into accepting the pacemaker in the first place by being told that it could always be removed at her request. Pain does not seem to be an issue at the present time for this patient.
Many believe that a pacemaker may be regarded as any other medical treatment, and it may be treated as any other medical life-sustaining treatment (given the parameters outlined above). Using this reasoning, turning a pacemaker off may be ethically justified if 1) continued treatment is inconsistent with patient goals, 2) death is imminent from either cardiac or non-cardiac medical complications, and 3) the patient is refusing or has refused other forms of life-sustaining treatment. However, others believe that, because of implantation into the chest cavity and the necessary wiring to an internal section of the heart, an implanted pacemaker becomes an integral part of the cardiovascular system, similar to an aortic graft or a cardiac valve replacement. Using this latter conceptualization, it becomes ethically problematic to render a pacemaker non-functional. Thus, many cardiologists are reluctant to turn off a pacemaker if a patient is not imminently dying.
In this case, the pacemaker is providing stimulation for the heart to continue beating. However, if it is turned off, the patient may not die; her heart may continue to beat on its own. Her cardiologist predicts that without artificial pacing, the patient’s cardiac condition will deteriorate and she may suffer from considerable cardiopulmonary complications.
Patients have a right to refuse any treatment, even life-sustaining treatment. It may rarely be ethically permissible to force some treatment on unwilling patients who are a danger to themselves or others. Though a patient may be involuntarily hospitalized to prevent suicide, only rarely is it felt justified to seek court authorization to enforce antidepressant medication. When a patient refuses effective and nonburdensome life-prolonging treatment, it is critical to understand the reason behind the request, and then to try to address that reason before considering acceding to the request.
There is no moral or legal difference between withholding and withdrawing a treatment. Thus it is permissible to stop a ventilator or dialysis if it is (a) no longer achieving its purpose, (b) causing intolerable symptoms, or (c) merely sustaining life with an intolerable quality. While it would be permissible for a patient to refuse pacemaker insertion, it is an unresolved question whether it is permissible to shut off a pacemaker which is sustaining life without causing intolerable symptoms. Some would argue that it is permissible because it is artificial technology, comparable to a ventilator. Most would argue that it is not permissible because the pacemaker, once inserted, becomes part of the person, and shutting it off is akin to assisting in a suicide.
In this case, the patient has not allowed her reasons for refusal to be addressed. In addition, her request, if followed, would probably not achieve her goal of being quickly dead and might even cause her greater physical distress for an unknown period of time.
The patient’s primary physician explained the likely outcome of stopping the pacemaker. He then told Dorthea and her family that he couldn’t consider stopping the pacemaker until she had had full treatment for her depression and her anemia. Two weeks later she consented to nursing home admission and beginning an antidepressant. Her appetite and mood improved, and inexplicably, so did her kidney function. She stopped asking about turning off the pacemaker.
[1] Heart block is a dysfunction of the electrical conduction pathway in the heart. It can lead to a slowing of heartbeat, and occasionally to temporary stopping for several seconds. Treatment may require the use of medication or a pacemaker.
This case study, used by permission, originally appeared in Ethics & Medicine: An International Journal of Bioethics Volume 24 Issue 1, Spring 2008.
