by David Magnus and Danton Char
The woods decay, the woods decay and fall,
The vapours weep their burthen to the ground,
Man comes and tills the field and lies beneath,
And after many a summer dies the swan.
Me only cruel immortality
Consumes: I wither slowly in thine arms
(Alfred, Lord Tennyson “Tithonus” lines 1–6)
It’s fitting that the ethical challenges raised in this, our Valentine’s Day issue, resonate in a mythic love story. Eos, titan of the dawn, fell in love with a mortal man, Tithonus. Because she could not bear to lose him, she pleaded with Zeus to grant him immortal life but forgot to ask for immortal youth, so he withered, unable to die but too fragile to live. Like Eos, our two target articles suggest that the current application of two heroic cardiac interventions, the widespread use of cardiopulmonary resuscitation (CPR) and the implantation of ventricular assist devices (VAD) in patients with end-stage heart failure, may reflect a medical ethos too enamored of preserving life without giving enough mindfulness to the burden on patients and families of survivorship in a debilitated or devastated state. How do we appropriately prolong life and health, while guarding against making Eos’ mistake?
By many accounts the widespread introduction of CPR is a public health success story. In the 110 years since George Crile first successfully used closed chest compressions on a patient in surgery and demonstrated their efficacy in dogs, CPR has been standardized, has been taught to millions of health care providers and regular citizens, and systems have been put in place to track CPR outcomes and initiate data-recommended improvements. The Institute of Medicine (IOM) can point to CPR-trained communities where more than 60% of persons with out-of-hospital cardiac arrest (due to bystander-witnessed ventricular fibrillation) survive and are discharged from the hospital. A complex, coordinated network of emergency personnel and a 911 system (emergency management system, EMS) has been put in place to respond to the immense public health problem of approximately 1600 Americans per day who suffer cardiac arrest.
While outpatient use of CPR has been largely a success story, the success is not unequivocal, particularly for inpatients. Although scientific understanding of cardiac arrest and therapies continue to improve, the ability of the EMS to consistently deliver timely interventions and high-quality care is variable, with disparate survival rates throughout America. Geographic residence is a strong determinant of survival. Minorities and people of lower socioeconomic status have worse CPR outcomes compared to others. For the few communities with high post-CPR survival rates, far more have survival rates of 10% or lower. Rosoff and Schneiderman argue that too much attention has been given to CPR’s successes, and not enough information widely given about the poor (and in some of their examples, distressing) outcomes that have occurred with CPR’s widespread implementation. Though acknowledging the value of CPR, they assert that it has been inappropriately applied and propose that the medical profession has an ethical duty to inform the public through education campaigns about CPR’s limitations and the clinical indications for which it has been demonstrated to have a reasonable probability of producing favorable outcomes. How to appropriately continue to use CPR as it is researched, and as it evolves (and hopefully improves) as a technique, against the background of cardiac arrest as a public health concern, is a complex question without a clear answer.
Barg and colleagues argue that, despite the potential benefits of ventricular assist devices (VAD) for destination therapy (DT), clinicians have not adequately examined the impact VAD DT implantation has on a patient’s identity and life experience. Like CPR, VAD is a life-prolonging therapy in the case of severe heart failure. VAD DT is an established compassionate use of this cutting-edge therapy. Until VAD technology emerged, cardiac transplantation was the definitive therapy for end-stage heart failure. The supply of organs, however, remains (and likely will remain) inadequate to meet the demand for patients who would qualify for a transplant. With improvements in medical heart-failure care, there has also been a growing population of patients with end-stage heart failure who are ineligible for transplantation because of age, comorbidities, or both. The establishment of VAD technology, a robust portable mechanical circulatory support, allowed the emergence of “destination therapy.” The VAD becomes definitive treatment as long-term cardiac support in these non-transplant-candidate patients. Since the introduction of this therapy, DT VAD use has expanded to become a major part of adult mechanical circulatory support. During 2012, 40% of VAD implants in the United States were designated as DT.
In children, VADs have also begun to assume an important role in the treatment of end-stage heart failure, and pediatric VAD DT has also begun to emerge as a clinical possibility for children with end-stage heart failure who are ineligible for transplantation. Although there are accepted criteria for VAD support in adults, indications and contraindications for VAD support in children are still being established. Most pediatric VADs are placed either as bridge to transplant (the VAD is then removed at time of transplant) or as bridge to recovery (the VAD is removed after myocardial recovery is achieved). The idea of pediatric VAD DT remains controversial because, unlike in adults, no clear criteria exist yet for children. Possible indications include systemic diseases traditionally thought to be contraindications to cardiac transplantation (e.g., Duchenne muscular dystrophy or mitochondrial diseases); recent or slow growing malignancy; single ventricle; heart failure and other organ disease (a situation that might lead to bridge to multiple-organ transplant vs. DT); severe obesity; ongoing infection (secondary to poor nutrition/cardiac cachexia); diabetes with end-organ damage; cross-match incompatibility; psychiatric or other nonlethal limitations; and substance abuse or other “social” contraindications. Given the complexity of these potential pediatric VAD DT indications, it is unresolved which, if any, pediatric patients exist who have a contraindication that would prohibit transplantation but could safely tolerate VAD.
Heart failure clinicians who have been interviewed about pediatric VAD DT do express concerns, particularly centered around the end-of-life issues and the ultimate need to guide withdrawal of care implied by choosing DT. Discontinuing VAD in a child can be emotionally very difficult for providers as well as families, much more so than VAD discontinuation in the adult DT population. Similarly, with improving VAD technologies that could allow safe, long-term VAD use until suitable transplantation, and with continuing improvements in outcomes for diseases that contraindicate transplant, like muscular dystrophies, clinicians have not yet been ready to accept “destination” for all of their patients, instead viewing pediatric VAD as a bridge and longer bridge. Barg and colleagues (2017) describe patients as entering a liminal, or undefined, state of being neither sick nor healthy, with no culturally scripted role or identity once they undertake VAD. Given that children may be on a VAD for a long time, through periods of personal development (such as adolescence), how to save their life, knowing that their life and identity are inexorably changed by the preserving VAD therapy, is a complex and unresolved issue. Barg and colleagues provide needed empirical data to help frame the discussion for VAD DT.
Together, hopefully, these target articles make an argument that we should be mindful of the very human price of placing the preservation of life above all else—that though Medicine may be able to save, it may not be able to preserve health or preserve the person who was there before the heart failure or cardiac arrest.