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Case:

Mr. C, a 68 year old widower with an implantable cardioverter-defibrillator (ICD) placed five years previously, was admitted to the hospital after his ICD discharged several times in one day. Each discharge was associated with severe pain, loss of consciousness, and heightened anxiety about experiencing future discharges. Evaluation of the ICD firing confirmed refractory ventricular tachyarrhythmias consistent with Mr. C.’s end-stage heart failure. Trials of anti-arrhythmic medications proved unsuccessful. The frequency of ICD discharges could not be reduced without deactivating the device (which would cause imminent death), yet leaving the ICD active would prolong Mr. C’s suffering.

When his primary medical team informed him about his medical condition and prognosis, Mr. C showed ambivalence about deactivating his ICD. He clearly stated to his health care team that he “did not want to live under these circumstances” and that “shutting off this pacemaker may be the best thing for me.” However, he did not like being left alone for fear his heart would stop and no one would be available to resuscitate him. His primary medical team consulted the Palliative Care Team (PCT) to discuss end-of-life options and goals with the patient and family. The PCT treated Mr. C’s anxiety with clonazepam and relaxation training, “supported” his ambivalence, and assisted with his discharge planning.

As the PCT continued working with Mr. C, it became apparent that Mr. C experienced tremendous remorse for “what I put my family through 20 years ago after my wife died.” Although his family openly stated that all was forgiven, Mr. C could not accept their reassurances – “I wish I could make it up to them.” The PCT initiated an intervention where Mr. C talked about his family members one at a time, and he described his happiest memory, what he appreciated, and what he loved about each one. His thoughts were written down, and the family was trained to continue the exercise until all family members were done. Mr. C was discharged with home hospice, and his family completed the PCT intervention at home. The day after Mr. C finished his individualized sentiments, he requested to have his ICD turned off. A representative from the ICD manufacturer came to Mr. C’s home and deactivated the ICD. Mr. C died two hours later in the comfort of his home and surrounded by his family.

Discussion:

ICDs are used to treat people at risk for sudden death due to ventricular tachycardia or ventricular fibrillation. They deliver an electrical charge to the myocardium during an arrhythmic event, and the “shock” allows the ventricle to resume a normal rhythm1. ICDs allow many people to enjoy a prolonged life without significant compromise to quality of life, but in cases of end-stage heart disease ICDs can cause significant physical suffering simply by doing their “job” - repeatedly normalizing arrhythmic events. Patient quality of life is further compromised by the severe anxiety associated with the fear of receiving a future shock2.

For patients with end-stage heart disease, deactivating the ICD can be a sound medical, ethical, and legal decision for them - albeit a difficult one. For Mr. C, his ambivalence about turning off his ICD was driven by his need for reconciliation with his family. Once this was achieved he calmly and peacefully made his decision to die. His case suggests that end-of-life decision making can be difficult for patients, and they may need time and guidance in completing their relationships with their loved ones before they can make the medical decision that is best for them.

ICDs can be deactivated in different ways depending on the urgency of the situation. In cases requiring immediate action (e.g., a patient is actively dying of end-stage cancer and his ICD fires causing the patient to go into convulsions), pacemaker magnets placed over the device deactivate it within seconds. In less urgent cases, the manufacturer and/or the electrophysiology service can assist with ICD deactivation. For patients at the end-of-life, turning off an ICD is similar to withdrawing a ventilator: the patient (or surrogate) has elected for comfort measures in lieu of aggressive medical care.

References:

1. Braun, TC, Hagen, NA, Hatfield, RE, Wyse, DG (1999). Cardiac pacemakers and implantable defibrillators in terminal care. Journal of Pain and Symptom Management, 18, 126-131. (No open access PDF)

2. Dunbar, SB, Warner, CD, Purcell, JA (1993). Internal cardioverter debrillator device discharge: Experiences of patients and family members. Heart Lung, 22, 494-501. (Open access PDF)

3. Quill, TE (1996). A midwife through the dying process: stories of healing and hard choices at the end of life. Baltimore, MD: Johns Hopkins University Press.

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Case:

Mary was a 58 year-old woman who was admitted to the hospital for management of a wound infection. Her past medical history included severe peripheral vascular disease, and she subsequently had bilateral, above-the-knee amputations. Her stumps were very necrotic, and did not respond well to antibiotic therapy. To further complicate her story, a routine imaging scan found suspicious lesions on both her lung and liver. This finding was highly suspicious for metastatic cancer since she also had a smoking history, significant weight loss and decreased appetite. Mary’s primary physician encouraged her to pursue a cancer workup, but she refused. She also decided that she did not want to pursue any other aggressive medical therapies that may prolong her life. Her only goal was to go back to her apartment where she could die in peace. The palliative care service was asked to become involved to help with discharge planning.

Since Mary previously lived alone, this was going to be a very difficult task. During her hospital stay, she became increasingly delirious, and it was clear that she would not be able to return home. We attempted to contact all of her relatives to recruit help. No one was able to take responsibility for her care at home, even with hospice assistance. So we attempted to make her hospital stay as pleasant as possible while these complicated issues were sorted out. We recruited a volunteer to sit with her several times per week to keep her company. Her delirium and agitation improved with the use of antipsychotics. Her pain had also improved after careful titration of her opiate and adjuvant medications. We also paid for a beautician to visit her here in the hospital. Mary was ultimately discharged to a local skilled nursing facility. To ensure continuity, our medical student on service wrote a letter to the attending physician there. We included some of the details of the care that we provided. We suggested that it would be very appropriate to provide Mary with some “luxuries” that would normally be contraindicated in her care such as milkshakes or ice cream.

Discussion:

Patients who do not have family or caregivers can create very challenging situations for hospital staff. Under usual conditions, palliative care extends the focus of care to family and friends of the dying patient. Family members are encouraged to create a home like environment in the hospital. Family photos, favorite music, or a blanket from home can make a hospital stay more pleasant. Patients that are alone often miss the comforts of home. According to Ferrell & Coyle, 2001, the discipline of palliative care provides physical, psychological, social and spiritual support to help the patient adapt to the anticipated decline, associated with advanced, progressive, incurable disease. Palliative care also alleviates isolation through a commitment to non-abandonment, ongoing communication, and sustaining relationships. The role of the volunteer and the medical student in this case was crucial. Volunteers are an integral part of the hospice and palliative care philosophy and approach. Beyond extending the available personnel, volunteers put a truly human, non-professionalized face on the provision of care.

References:

1. Ferrell, B.R., and Coyle, N. Textbook of Palliative Nursing. 2001. Oxford University Press, New York, 684.

2. Mount, B.M. Volunteer support services: A key component of palliative care. Journal of Palliative Care, 1992, 8(1):59-64. (no open access pdf)