(Brett Ryder/Courtesy of Health Affairs)

Beverly prepares for her husband’s showering ritual as usual. She spreads the towels across the bed. Robert, so frail that he can barely walk, comes to lie down while she undresses him. She puts the electronic controller for his left ventricular assist device (LVAD) and two batteries inside a waterproof briefcase before zipping it up. From the rolling cart where she keeps all her supplies, she takes the plastic stretch-and-seal wrap and uses it to waterproof the bandage covering his driveline, a sterile tube leading from the LVAD battery through the skin of his abdomen and up to his heart. She puts the briefcase strap over Robert’s head and helps him into the bathroom, sitting him down in his shower chair. Beverly climbs into the shower with him so she can shampoo his hair and scrub his body.

Fifty-three years into their marriage, Robert’s heart failure is now officially considered end-stage, a diagnosis that means the heart disease no longer responds to conventional therapies such as medication or to symptom management strategies such as diet and exercise. Robert’s age — he’s 73 — and frailty render him ineligible for a heart transplant.

Robert and Beverly Stanford, who live outside Houston, volunteered to tell us their story as part of a research project we have undertaken to help patients decide whether they should undergo treatment. LVAD can save lives, but doctors don’t know how many complications might be expected for those who suffer from other conditions as well. In addition to heart failure, Robert has anemia, Barrett’s esophagus and diabetes mellitus, which places him among the sickest of patients with end-stage heart failure.

Implant, watch and wait

In 2012 Robert received his first LVAD, a device that attaches to his heart’s left ventricle and uses a tiny, continuously moving propeller to help blood flow. Doctors hoped it could help him live another year or two, maybe longer, and even improve his functionality and quality of life.

After receiving the LVAD, Robert was admitted to the hospital eight times over the course of six months. He suffered from vocal cord paralysis after prolonged intubation and tracheotomy from his LVAD surgery, and he was admitted to the hospital for postoperative gastrointestinal bleeding and hemolysis (rupture of the red blood cells), which required that a new LVAD be implanted.

The second LVAD lasted just over a year and half before the doctors discovered that Robert had pump thrombosis, or a clog in the device’s machinery. Another replacement was made, which means that Robert is now on his third LVAD.

Despite Beverly’s painstaking attempts to avoid infection, Robert’s driveline had become infected shortly before we interviewed her.

Beverly had watched with a surgeon’s precision as it grew — getting pinker and bigger, and finally turning red. A week later, it was an abscess as big as a boiled egg, fiery red on top with, as Robert put it, something oozing from the dime-size hole. The abscess resulted in two trips to the hospital before doctors brought it under control. But the threat of future complications constantly loomed over them.

Before the abscess, there had been multiple episodes of GI bleeding, and nobody could figure out what was causing them. Eventually, Beverly was taking Robert back to the hospital every week to have his blood tested and every three or four months for blood transfusions. There would be days when he could do nothing more than lie in his hospital bed and stare at the walls. At night, the nurses would hear him calling “Beverly! Beverly!” when she was not at his bedside.

Beverly grew wary of letting Robert out of her sight. They were afraid that leaving their home’s quarantined environment might set off some unforeseeable chain of events that would land them back in the hospital once more. It was also cumbersome to travel away from home with the battery pack and cleaning supplies.

Robert opted instead to spend most of his days sitting out in the yard in the shade, watching the cars go by, observing the construction of a house across the street and waving at children on their way to school. Beverly had become his full-time caregiver, meticulously managing his medications and hygiene and all of the household chores. She had suggested hiring a helper, but Robert wanted her alone to take care of him. No strangers in the house.

If they had known then . . .

Beverly’s responsibilities tripled, requiring her to clean the driveline site three times a day instead of once to keep the infection at bay, with each cleaning taking up to 20 minutes. Bathing Robert became so involved, taking up to two hours each time, that they did it only once every three days. Afterward the bedroom was littered with bandage wrappers, saline bottles, soap, antiseptic and towels to clean up.

“I am so sorry you have to do this,” Robert tells his wife when she washes him.

But Beverly replies, “I don’t mind. It’s okay. I’m just sorry that our beautiful driveline is not beautiful right now!”

Beverly tells us that she wishes someone had told her before her husband got the LVAD that all of this might happen.

But we know the uncertainty doctors confront, illustrated in the Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS), a database that tracks LVAD outcomes.

Trying to navigate the INTERMACS data is like trying to compare apples and oranges, with different studies reporting results for different types of patients — for example, those receiving LVADs as a bridge to heart transplant vs. those who will have the device until death (in which case the LVAD is known as a “destination therapy”). Similarly, different outcomes are measured by different methodologies across different settings. Even doctors are perplexed about how to interpret all the data. Without the ability to truly evaluate their risk, Beverly and Robert’s decision to move forward with LVAD therapy had been based on the hope that Robert would be one of the many patients who thrive after surgery.

In countries such as the United States with ready access to new technologies, many patients have the attitude that if something can save you, why not try it? Opting out of available treatment is often seen as giving up. And doctors might equate nonintervention on their part to failure to help a patient.

Discussing other options can be difficult. A study presented at the 2014 Quality of Care and Outcomes Research Scientific Sessions said that 52 percent of surveyed heart-failure clinicians reported feeling reluctant to discuss end-of-life options with patients, citing their own discomfort as well as the belief that patients would feel uncomfortable with the subject. Other respondents said that they didn’t want to make the family lose hope.

“You can’t stop it,” Robert tells Beverly, referring to his continuing medical complications, but she is determined. “Yes, I can!”

Unfortunately, the truth is that she can’t. She has not been able to control the infections, lesions or intermittent periods of confusion and clumsiness that Robert suffers, knocking glasses over in the kitchen and bumping into the furniture.

Would they have declined LVAD therapy if they had known then what they know now? Probably not, Beverly says. She reminds herself of their larger goal, which has not changed: Keep Robert alive. How could they have known for sure what would happen? What if LVAD therapy had both extended Robert’s life and improved his quality of life, and they had never given themselves the chance to find out?

An ethical dilemma

With very few exceptions, virtually everyone in need of an LVAD is saying yes to the therapy. When such technologies were first introduced in the late 1980s, they were reserved for patients with profound cardiogenic shock and refractory heart failure, and selection criteria focused on future transplant eligibility. Since LVADs have become available as a destination therapy, there has been a dramatic expansion of the candidate population over the past 10 years. The total number of LVAD candidates is now estimated at around 250,000 to 300,000 individuals per year in the United States alone.

Unfortunately, a sizable percentage of LVAD candidates have a high probability of experiencing significant pain and suffering after the device is implanted, with no foreseeable long-term benefits other than longevity itself. An ethical dilemma thus emerges for doctors: Should they narrow eligibility criteria to exclude patients with very high probability of complications, even if an LVAD might save their lives and if patients want one? In other words, should they refuse patients access to a promising available treatment out of a desire to help them avoid potential, but not certain, suffering?

Other options for addressing end-stage heart failure are often overlooked. Most hospitals offer information about palliative care but patients and doctors remain reluctant to discuss such care. In interviews, Robert’s cardiologists admit that they and other doctors often shy away from in-depth discussions about palliative care, relying on the hospital’s palliative care specialists to discuss end-of-life issues with patients.

If Robert and Beverly had been approached by a palliative-care specialist or if their doctor had explicitly discussed palliative care with them, they might have reached a different decision. And if Robert and Beverly had decided to move forward with LVAD therapy anyway, they might have done so with a clearer picture of all their options.

As clinical trials continue and risk-prediction models are refined, clinicians will be increasingly able to assess patients’ suffering, at present and in the future, with or without an intervention. They will be able to provide better projections of outcomes, including quality of life and longevity. In the meantime, understanding how patients and caregivers really define “benefits” can help doctors and patients to decide if LVAD therapy is likely to meet those definitions and expectations.

Flash forward half a year. It has been almost four months since Robert passed away. Beverly remembers when she felt that neither of them could carry on, dealing with the stress of tiptoeing every day around the land mine of Robert’s shaky recovery. She remembers telling him in a moment of clarity and acceptance: “We can’t expect things to be like they were, Robert. We’re just going to have to find a new normal.”

In reality, she was saying this to herself, trying to cope with the fear that things might not turn out all right after all. Their “new normal” was a tightrope walk, a suspension in limbo that tested their faith and their confidence in the decision they had made. Even now, with Robert finally at rest, Beverly wonders if they did the right thing.

Kostick is a research associate at the Center for Medical Ethics and Health Policy at the Baylor College of Medicine, in Houston. Blumenthal-Barby is an associate professor of medicine and medical ethics there. Their work was supported through a program award from the federally funded Patient-Centered Outcomes Research Institute. This article was excerpted from Narrative Matters in the August issue of Health Affairs; it can be read in full at www.healthaffairs.org.