Modern life-sustaining therapies, such as total artificial hearts, extracorporeal membrane oxygenation (ECMO), and left ventricular assist devices (LVADs) pose some complex ethical questions. Still, most residency and fellowship programs do not address the ethics of these interventions specifically.
“These devices are becoming more prevalent, and residents of all stripes will see them in their patients,” says James Kirkpatrick, MD, adjunct assistant professor in the department of bioethics and humanities at the University of Washington Medical Center.
Such devices “represent the future of much of medicine, touching on the interaction of humanity with life-sustaining and life-enhancing devices,” Kirkpatrick adds. “We all need to realize the potentials and pitfalls of ‘bionic’ technologies.”
Ongoing Ethics Education
The authors of a recent paper proposed integrating the ethics of mechanical circulatory support into graduate medical education, with a focus on patient best interest, autonomy, informed consent, shared decision-making, surrogate decision-making, and end-of-life care.1 “The medical community, especially cardiology and cardiac surgery, faces difficult decisions around when to initiate therapy, on which patients, and when and how to withdraw that therapy,” says Elizabeth Sonntag, MD, the paper’s lead author.
To provide excellent care to patients who may require these therapies, clinicians need to be able to expertly navigate the ethical considerations. “It only takes caring for one patient on ECMO to think, ‘This is something we must explore further,’” says Sonntag.
Researchers were not surprised to find a lack of robust ethics programs in most residency and fellowship programs. As a pulmonary and critical care fellow at the University of North Carolina, Sonntag sees ethical issues in the ICU regularly. In teaching a medical ethics elective at the UNC School of Medicine, she sees how eager students are for an ethical analysis of complicated cases.
“In both of these arenas, I am continually, pleasantly surprised at how empowered students and trainees feel when they have the tools, language, and framework to approach challenging ethical dilemmas,” Sonntag reports.
Ethics education should not stop at medical school, but should continue in residency and fellowship training, as well as throughout a physician’s career, Sonntag offers. Ideally, she says, this should be “a collaborative effort between hospital ethicists and practicing clinicians.”
Not Enough Time
Emergency ECMO can significantly augment the circulation of patients who have suffered cardiac arrest. These devices are even available on ambulances in some settings. “There is not always a significant amount of time to consider all of the implications of starting ECMO on individual patients,” Kirkpatrick notes, adding that this includes goals of care, values, and preferences. “We are at the point that our different resuscitative measures come with very different implications.”
Patients who would be comfortable receiving shocks and chest compressions may be averse to allowing a machine to support their cardiac and pulmonary functions, even briefly. Alternatively, ECMO (and percutaneously placed left and right ventricular support devices) are used sometimes to support patients through surgery and procedures. The intent is to remove the devices afterward. “But things don’t always go as planned,” Kirkpatrick cautions. Some patients become dependent on the support devices for longer than expected. Then, ethical issues center on withdrawal of life-sustaining therapies.
“While much of this has been worked out in relation to withdrawal of ventilators, there remains significant difficulty” in the case of ECMO discontinuation, Kirkpatrick explains. Family members and clinicians sometimes object to removal. This is ethically problematic for several reasons.
“Maintaining patients on support for long periods of time consumes resources,” Kirkpatrick says. This can prevent a hospital with few machines or limited trained staff from using them for other patients.
“The hope in most of these cases is that the patient would recover or be bridged to a long-term support solution or transplant,” Kirkpatrick says. Instead, patients may suffer complications that make them poor candidates for these plans. “It is not always clear when the trajectory is toward death instead of the hoped-for outcome,” Kirkpatrick adds.
Role-Based Ethics Training
There is growing recognition that ethics should be part of all educational offerings for trainees who care for patients with these devices. What is really needed, says Kirkpatrick, “is ethics training that addresses the resident level, and a different curriculum for the fellow level.”
Each plays a different role. Residents in surgery and internal medicine will rotate through ICUs where ECMO is employed. “Residents will struggle less with decisions about when to implant, but may interface regularly with patients, families, and other clinical team members over issues related to discontinuation,” Kirkpatrick offers. (See sidebar box at the end of this article for more.)
Most of the decision-making and follow-up of LVADs will be the purview of cardiology and cardiothoracic surgery fellowships. “Fellows and other higher-level trainees must be educated about ethical issues related to indications and choices to employ the technologies, as well as decisions about discontinuation,” Kirkpatrick notes.
Even “durable” devices can wear out. “Significant ethical consideration and even moral distress may center around replacing them,” Kirkpatrick cautions.
Patients on devices may develop other diseases, like cancer or dementia, which lead to questioning whether the device should be discontinued. “Hospice services for patients with devices are generally not considered to be completely adequate in all locations,” Kirkpatrick observes. This is due to lack of training, discomfort with the devices, and insufficient resources to maintain them.
In the minds of patients and clinicians, “the idea of ‘turning off’ a device that essentially functions as a part of the heart may take on ethical overlays distinct from other organ-supporting devices,” Kirkpatrick adds.
LVADs “can absolutely improve survival and quality of life. But there are definitely tradeoffs associated with that,” says Keith M. Swetz, MD, MA, medical director of the University of Alabama, Birmingham’s Supportive Care & Survivorship Clinic.
Clinicians need to know what the patient is really willing to accept in terms of responsibility and care requirements. “We don’t do a great job helping people understand fully what they are getting into,” Swetz admits.
Some patients say that they were so sick they felt as though they did not have much of a choice. Other patients had undergone defibrillator or pacemaker implantation procedures and handled it well, saying they are willing to do what it takes. Regardless, patients do not always have all the information they need to make a truly informed decision. “It’s not just about filling out an advance directive or signing a consent for the procedure,” Swetz says.
Certain centers might work with patients with LVADs to provide education on how patients can adapt to living with the device. However, those patients tend to be the ones performing better than anyone else.
“If you see one person who’s doing great, the thought is, ‘I could do great, too.’ But for that person to be successful, a lot has gone into making it happen,” Swetz explains.
Often, the consent process is focused mainly on the implantation itself and less on long-term consequences. What is missing is an understanding of the range of symptoms or complications that can happen over time. Clinicians may not always be forthright with patients on how difficult the prospect of living with an LVAD is going to be and what range of outcomes may occur. “There is a tendency to minimize it and gloss over it,” Swetz notes. “Or, it is reviewed, and patients are too sick to take it all in.”
Reluctance to Deactivate
Consent discussions do not typically cover what happens if things do not work out as planned.2 A patient may want to deactivate the LVAD later, but find out it is not that simple. “Even though there has been analysis that this is a therapy that people can stop if they don’t want it any longer, just as they can request to have a pacemaker or defibrillator turned off, clinicians are more reluctant to do so with an LVAD,” Swetz explains. Often, this is because it results in death much more quickly for most patients.
A patient may find out later that, in fact, her clinician is not willing to turn it off. “And that was never told to them ... to me, that’s a really sticky situation,” Swetz says.
Some clinicians take the position that they will not turn the device off unless the person is dying. “I don’t think that’s something we should take lightly and not include in the consent process,” Swetz suggests. “That is poorly addressed, and is a huge gap in current care.” In a recent survey of 440 clinicians, 60% of cardiologists said they believed a patient should be imminently dying to deactivate an LVAD.3 “Some people have much more comfort and experience with this, and others less,” says Swetz, one of the study’s authors.
Good shared decision-making, conducted early, can prevent problems later. “There is less likelihood of having ethical quandaries or having people dissatisfied with the outcome because it is worked out upfront,” Swetz says.
This can prevent the need for ethics consults to answer the thorny question of whether it is right or wrong to turn off the device. “Using ethics and palliative care resources to think through some of these problems ahead of time, before we end up facing them, is the ultimate goal,” Swetz adds.
- Sonntag EA, Shah KB, Katz JN. Educating resident and fellow physicians on the ethics of mechanical circulatory support. AMA J Ethics 2019;21:E407-E415.
- Fedson SE, MacKenzie KK, Delgado ED, et al. Mapping the informed consent process for left ventricular assist devices. ASAIO J 2018;64:630-635.
- McIlvennan C, Wordingham SE, Allen LA, et al. Deactivation of left ventricular assist devices: Differing perspectives of cardiology and hospice/palliative medicine clinicians. J Card Fail 2017;23:708-712.