Living or Leaving: Does Palliative Care Deserve a Place at the TAVR Table?

Palliative care is not on the radar of many cardiologists and when it is, it is often an afterthought: the path taken when other treatments fail. Now there's growing interest in whether it can help ease the course of patients with severe aortic stenosis (AS) facing hard choices about whether to undergo intervention.

Some experts believe that palliative care deserves a spot on the TAVR heart team, so that patients and their families can take advantage of what it offers—psychosocial support, symptom management, shared decision-making, and advance care planning—as needed. Others, however, are concerned that palliative care might delay TAVR or even discourage good candidates from undergoing an intervention that could extend their lives and improve quality of life.

A debate on the topic, held at the recent American College of Cardiology (ACC) 2017 Scientific Session, has sparked an ongoing conversation among those who took part, Danny Dvir, MD (UW Medicine, Seattle, WA), told TCTMD.

Dvir was assigned to argue against a role for palliative care in the TAVR setting, but he says even he sees the potential for this added support in certain situations.

“Treatment of AS is a moving target now. The indications change, the patient age changes—it’s really changing all the time,” Dvir observed. “And it’s complex to understand which populations should have what, and to understand the futility. Palliative care interacts with many, many [aspects of] decision-making related to our patients.”

Obliquely at least, the 2017 TAVR decision pathway released by the ACC earlier this year endorses the use of palliative care, specifically in futile cases where the risk of intervention is likely to outweigh the risk. The expert consensus document emphasizes the importance of shared decision-making, saying it “enables an exchange about the promise of TAVR as well as the realities of advanced age, alternatives to intervention, and palliative care options.”

To TCTMD, James N. Kirkpatrick, MD (University of Washington, Seattle), co-chair of the ACC’s palliative care working group, said the approach can help patients see the “broad picture” beyond intervention. “I don’t think anybody would be suggesting . . . that this would decrease the number of TAVRs that would be done in a substantial way,” said Kirkpatrick, who helped organize the palliative care-related session at the ACC meeting. “I think it’s more about aligning patient expectations and preferences, and doing the right thing for the patient.”

In 2016, Kirkpatrick and colleagues published the results of a survey asking about palliative care in patients being considered for TAVR or ventricular assist devices. More than 300 people responded, with 88.3% saying such consultations could be helpful in the TAVR setting. Yet only 34.4% of those who cared for TAVR patients reported providing palliative care consultations “often or always for patients who were deemed ineligible” for the procedure. Among all respondents, only 10.5% said they had received formal instruction on palliative care during their training.

A Roadblock or an Extra Lane?

“Aortic stenosis is a mechanical problem,” Dvir stressed during the debate. As TAVR becomes an ever more low-risk procedure, with fewer complications and better survival, “the role of nonmechanical treatments of aortic stenosis is diminishing. It’s quite clear,” Dvir said to TCTMD.

Not long ago, in uncertain cases, the solution was to use balloon valvuloplasty “to open the valve a bit, to see if the patient feels better, and then to do TAVR,” he explained. “[Today] since there is not negligible risk with balloon valvuloplasty, and it’s not a very effective procedure, I would argue just to do the TAVR.”

Adding palliative care as another step in the process could slow things down. “If we talk about palliative care, or we talk about more discussion before we do the procedure, or more consultations needed, or more exams needed, any delay in the procedure has some [repercussions],” Dvir noted, particularly in elderly patients whose current quality of life is poor and for whom life expectancy is already limited. “We’re leaving the patient with life-threatening illness, and we want to do some more work-up,” he said. “That is not without risk.”

So “if you see a patient in clinic and you do want to involve palliative care management with that patient, I would argue that it should be performed rapidly,” Dvir urged. “We cannot wait days for another clinic visit” just for palliative care.

Ted Feldman, MD (NorthShore University HealthSystem, Evanston, IL), who told TCTMD that palliative care in TAVR is indeed rare but “also growing in awareness and use,” said Dvir’s concerns over delayed treatment are valid. “Severe symptomatic aortic stenosis is a lethal disease, and in the highest-risk patients, it has a 50% 1-year mortality. That’s 1% per week mortality. So for somebody who is ultimately likely going to be treated, waiting carries risk.”

But it’s impossible to proceed with TAVR until patients and their family members agree that it’s the best route. “The process can easily run in parallel with a TAVR evaluation, and many families are receptive to the idea that the diagnostic evaluation doesn’t preclude deciding not to go ahead with therapy,” Feldman said, adding, “There are cases where it’s just going to take time. There’s no doubt about it.”

Kirkpatrick also said that delays in care “absolutely could happen.” This is why it’s important to think carefully about how palliative care specialists enter the picture, he said. “I personally like this idea of them on the [heart] team as opposed to a one-off consult in which we don’t know what’s going to happen. There is the potential for delay when that occurs, if there’s misunderstanding [or] if there’s miscommunication. . . . But if you take steps to ensure good collaboration and communication, I think the risk of that happening is very, very low.”

Getting a Head Start

All this stands as evidence that, when dealing with AS patients for whom TAVR offers uncertain benefit, palliative care should start early, says James B. McClurken, MD (Doylestown Hospital, Doylestown, PA). McClurken, who argued in the ACC debate that palliative care in TAVR prolongs meaningful life, told TCTMD that he’s a “firm believer” in its role on the heart team.

“It actually makes decisions easier for us, and it gives us the ability to shed our hero syndrome a little bit, when we think we may not be able to bring quality of life . . . for this individual patient,” he said. “Palliative care is not abandonment of the patient, and it’s not stopping potentially aggressive management.”

Instead, McClurken explained, earlier involvement usually “carries the conversation further down the pathway of ‘what ifs.’ What if we have a complication with the procedure? What if your kidneys fail? Are we going to do dialysis? What if we have a misadventure during deployment of the valve?”

At his center, the decision to get palliative care input is made on a case-by-case basis, with 7% to 15% of patients getting it, McClurken reported. Typically, these are the high-risk or extreme-risk, inoperable cases. “It’s the uncertain-outcomes patients that we want to involve in palliative care,” he said, citing a 2014 paper in JACC: Cardiovascular Interventions that described the continuum of futility and benefit with TAVR.

Making decisions all along the way is useful, he stressed. “All that dialogue happens ahead of time, and it eliminates the hand-wringing among family members after the fact. The family members usually all want to do everything, unless the [patient] has made it very clearly known what their wishes are. And many times the family members in my experience still find great anxiety and anguish over making decisions when [the patient] is having a stormy course.”

Dealing With Uncertainty

Much deliberation is involved in handling uncertain cases, McClurken said. “We tend to err on the side of doing the procedure when we’re in doubt. But it’s extremely important to have the dialogue that we’re not sure this is going to benefit quality of life. You may well still be on the oxygen. You’re certainly not going to be able to walk any more if you’re arthritic and not walking because of that now.”

Some but not all patients then choose to proceed. With upfront input on palliative care, “at least you’ve had the conversation,” McClurken said. “And in the unfortunate circumstance where they’re not better a year later and they’re still dragging around an oxygen tank and they’ve been hospitalized twice with pneumonia or something, the palliative care connection or interaction has already started prior to the intervention. And I think that’s a good thing. I don’t view it as obstructive of care or utilization of the procedure.”

Ethics consultation, a close cousin to palliative care, can come into play when decisions are being made—by patients, their families, and their physicians—on whether to pursue treatment.

“We see a very large number of really old, end-of-life patients,” Feldman explained. “This is the so-called Cohort C group, and it’s a real problem.”

In cases where little benefit is expected, “how do you first of all decide basically to not treat somebody with TAVR in this instance, or with anything more than comfort care? In some cases it’s an easy decision, where patients have comorbidities that we all recognize defeat the value of a TAVR procedure,” Feldman said. “But there are borderline cases where we really do need a process to help patient, family, and physicians all arrive at the same place.”

When TAVR Isn’t Done

Although it’s a rare occurrence, Feldman said he sometimes sees a “patient who is totally salvageable who thinks it’s time to throw in the towel. You hear somebody who’s 73 years old and looks pretty good say, ‘Well, I’ve had a long life. I’ve got a couple of grandkids. I’m ready to just give it up and die.’ You’re looking at him and thinking, ‘Oh my god, with therapy, you’ve got a decade ahead of you of probably good-quality life.’”

McClurken shared a similar experience. “We’ve had some patients who surprised us that we thought were wonderful candidates for TAVR but had really kind of lost their will to live,” he said. One such case was a 98-year-old man with severe AS who was living independently. That patient made it clear that he was only there because his cardiologist referred him, and he didn’t want treatment. “And we educated him [as to] what it was about. He looked like a good candidate and maybe even could go home the next day. He said, ‘I’m 98. All my friends are dead. My family’s dying off.’ He wasn’t suicidal, but he just sort of lost his desire to keep living for another handful of years.” This is a scenario in which palliative care would be key, McClurken added.

Another “not unusual” circumstance occurs when doing CT angiograms of the chest and abdomen to assess the best access route for TAVR, he said. “Probably somewhere between 10% and 15% of the time we find something else [like] a renal cancer nobody knew about or a nodule in the lung that looks concerning although it’s small.” Oftentimes it’s thought that the valve disease will lead to death faster than would the tumor, McClurken noted. “But if it looks like the tumor is widespread, we obviously put the brakes on and don’t do anything. . . . That changes the course of things.”

Exactly which cases fall into the category of futile is hard to pinpoint, Dvir said. “It’s difficult to give an accurate number. Some say 10%, some will say 35% of patients undergo TAVR and do not improve clinically after the procedure. And the procedure is expensive. It’s not without cost.”

As such, this is “an ethical discussion,” he noted, adding, “If we want to make it more dedicated to the clear-cut patients that will improve after the procedure, then we can be more selective. But we may lose some patients that could’ve improved after TAVR and will never go to TAVR.”

Asked about cost, McClurken agreed: “This is not cheap at all. [TAVR] in general is utilized in individuals who we think are going to live at least another year. So their medical coexisting circumstances have to portend longevity.”

Improved quality of life, however, is itself a goal of TAVR, he said, noting that data on that are now starting to trickle in as the Society of Thoracic Surgeons/American College of Cardiology TVT Registry enrolls more patients and follows them over time. Even with those results, it’s hard to get a full understanding of how things turn out, given that ascertaining quality of life requires making sure that patients fill out questionnaires long after treatment. “A lot of them don’t. And the ones who especially don’t are the ones who have a lousy quality of life,” he commented.

In decision-making, the hard part is knowing what to do with patients who are “on the cusp” in terms of deriving quality-of-life benefit. “We’ve had a couple of people who have just really perked up” after TAVR against expectations and serve as a reminder that treatment shouldn’t be unnecessarily withheld, McClurken said.