Of patients with left ventricular assist devices (LVADs), about half end up deciding to withdraw them. Shunichi Nakagawa, MD, and colleagues noticed that when the patient was the one making the request, it seemed to take longer.
“We had been seeing that it is more difficult when patients are awake and able to join the decision-making process,” says Nakagawa, director of inpatient palliative care services at Columbia University Medical Center.
Researchers collected objective data on what happened after a request for LVAD withdrawal. They studied 62 patients who underwent initial LVAD therapy from 2010-2018, and subsequently underwent withdrawal. The authors found LVAD withdrawal in awake patients with decision-making capacity was more difficult, with more palliative care consults.
Patients sometimes ask for LVAD to be withdrawn, stating they “do not want to live like this,” that there is no quality of life, and that they are suffering. “When patients make statements like that, we have to meet with the clinical team and the family,” says Nakagawa, the study’s lead author.
Ideally, all three involved parties (the patient, family, and medical team) agree what needs to be done. “Clinicians have to feel that the request makes sense, based on the patient’s medical condition,” Nakagawa says.
Time is needed to fully explore the situation. It is even possible that receiving adequate treatment for pain or depression can change things. Certain patients just need more support. “As clinicians, we don’t jump on one single statement. We have to do everything possible to help that patient first,” Nakagawa says.
Other patients may suddenly change their minds. At one point, one patient told the clinical team he wanted to stop LVAD, despite not reporting pain or shortness of breath. The next day, the patient said he had been feeling down, but was feeling better and wanted to continue.
Another patient came to the clinic to specifically request stopping LVAD. The man was clear that he did not want to continue to live with the device. “The patient was not that sick. That was very difficult and made the clinical team very uncomfortable,” Nakagawa reports.
Over the next three months, clinicians met with the ethics committee to discuss the troubling case. Most members were not comfortable accepting the request. The team believed it was too early to know for sure the patient could not experience an acceptable quality of life with the LVAD. The patient continued to clearly restate his wish to withdraw the device. He told clinicians repeatedly: “This is not your life, this is my life, and I cannot continue living this way.”
“The ethics committee finally agreed to proceed with withdrawing LVAD,” Nakagawa says.
Whatever the result, clinicians need to be sure the patient’s wishes are consistent over time. How much time depends on the situation. If a patient is in the intensive care unit on a breathing machine and dialysis, with multisystem organ failure, it is probably not necessary to wait long. “The family and the medical team would agree that patient is suffering and the request is appropriate,” Nakagawa says.
In the example of a patient at home who is not that sick, clinicians or family will be uncomfortable with the request. “We don’t want to quickly jump to the conclusion to stop LVAD,” Nakagawa says. “At the same time, the longer it takes, the more the patient’s suffering is prolonged, which is not fair to the patient.” The team needs to take enough time to deliberate, but not too much time. “We do not want to make a decision prematurely,” Nakagawa adds. “That is not a delay. That is time we need to take.”