Proactive palliative care increases in prominence for advanced HF management

As a chronic, progressive condition that affects an estimated 5.7 million patients aged 20 years and older, HF is among the most common reasons for hospitalization in the United States. Some patients with HF face an increasingly poor prognosis, for which the benefits of more advanced treatments may not outweigh the associated risks. For these patients, palliative care is increasingly playing a role.

“Patients with advanced HF, or HF approaching the end stage, have a prognosis which, absent salvage therapy with transplant or mechanical cardiac support, approaches that of some of the most severe cancers,” Akshay Desai, MD, MPH, from the cardiovascular division of Brigham and Women’s Hospital, told Cardiology Today. “There is an increasingly intense focus on the balance between quality of life and intensity of care in the end stage of HF.”

To this end, there has been an increased focus among HF specialists and others who care for these patients on providing them with palliative care, and not only as an end-of-life measure.

“In the past, palliative care was thought of as only needed when there were no longer any options for the patient and end-of-life decisions needed to be made,” Jeffrey Teuteberg, MD, associate professor and medical director, advanced heart failure in the Heart and Vascular Institute, University of Pittsburgh Medical Center, told Cardiology Today. “However, palliative care is more than just having goals of care discussions with the patients. It’s focused on pain and symptom management. As patients become sicker, they have more of a need for palliative care, and now we slowly introduce palliative care to begin to comanage patients with us. As patients become sicker, the palliative care team does more.”

A shift in care

The use of palliative care in patients with CVD has increased in recent years, according to Larry A. Allen, MD, MHS, medical director of advanced HF and associate professor of medicine, University of Colorado Anschutz Medical Campus, Aurora.

“Historically, hospice was developed for patients with cancer, but it is increasingly used for patients with CVD. In 2014, 14.7% of admissions to U.S. hospices had a primary diagnosis of heart disease,” Allen told Cardiology Today. “There is an increasing population of patients with progressive, symptomatic HF for whom traditional care eventually fails to maintain quality and quantity of life, and this has created a strong need for palliative care.”

Photo credit: UC San Diego Health. Reprinted with permission.

However, palliative care is not necessarily synonymous with hospice care, and it should ideally begin well before hospice, according to Eric David Adler, MD, director of cardiac transplant and mechanical circulatory support and associate professor of medicine at University of California, San Diego.

“Palliative care can be done concurrently with advanced treatment,” Adler said in an interview. “The idea is that palliative care, as a specialty, addresses pain, suffering, psychological disease, family-related problems and end-of-life planning. All of those things should go on concurrently with regular care.”

The shift toward palliative care has also been driven by awareness of the high readmission rates for patients with HF.

“The early involvement of palliative care and the kinds of services it provides can help reduce readmissions,” Adler said. “So we can think of palliative care different from hospice, as a means of reducing readmission.”

Moreover, the Joint Commission on Medicare has mandated that every center with an advanced transplant or left ventricular assist device program also offer palliative care services.

“Because of that, these centers have all had to step it up,” Adler said.

Recent evidence

The increased focus on palliative care in patients with advanced HF was evident at the Heart Failure Society of America’s Annual Scientific Meeting in September, during which two studies on the topic were selected as late-breaking clinical trial presentations.

The NIH-funded, single-center PAL-HF trial randomly assigned 150 patients with HF and elevated risk for hospitalization or mortality at 6 months to a patient-centered, multidisciplinary palliative care intervention in addition to guideline-recommended treatment or to guideline-recommended treatment with the usual care. The primary outcome was health-related quality of life, and researchers found that two of those metrics — the Kansas City Cardiomyopathy Questionnaire and the Functional Assessment of Chronic Illness Therapy-Palliative Care — were significantly improved in patients who received the palliative care intervention.

Besides yielding improvements to quality of life, palliative care can also give patients a more accurate and realistic picture of their prognosis. Although this knowledge may be difficult for patients to accept, it gives them the benefit of being able to make important decisions and plans for treatment and end of life.

The SWAP-HF trial, presented at HFSA 2016 by Desai, randomly assigned 50 patients with acute decompensated HF and more than one risk factor for poor prognosis to a social worker-led palliative care program or the usual care. At 6 months, patients in the palliative-care group were more likely to have prognostic expectations that were in keeping with those of their physicians vs. those who received usual care (94% vs. 26%; P < .001). Those in the palliative-care group were also more likely to document their advanced care preferences (65% vs. 33%; P = .02).

“There’s a disconnect between patients’ perceptions of prognosis and their physicians’ perception of prognosis,” Desai said. “What is increasingly recognized is the need to close the gap in understanding between patient expectations and the reality of their prognosis. They need to formally confront some of these complex decisions around what they actually want done, and what is the balance of risk and benefit.”

Available guidance

There are no official guidelines pertaining specifically to palliative care in patients with advanced HF, but most HF guidelines discuss palliative and hospice care to some degree. Moreover, the American Heart Association and American Stroke Association recently published a policy statement on palliative care for patients with CVD and stroke, written by Lynne T. Braun, PhD, CNP, FAHA, from Rush University College of Nursing, Chicago, and colleagues.

“These are palliative care guidelines for stroke and [CVD],” Adler, a member of the writing committee, said. “They’re not specific to HF, but they do contain a huge section on HF.”

In the section on HF, Braun and colleagues discussed the need to consider a patient’s potential for quality of life as well as extension of life.

“The likelihood of complications and changes in lifestyle and [quality of life] need to be considered within the context of the patient’s life expectancy and with the alternative of remaining on medical treatment,” the statement reads. “Patients and their families considering these surgical options will benefit from primary palliative care support from the heart transplant and mechanical circulatory support teams and specialist palliative care consultation for advance care planning, goals of care, symptom management and shared decision-making.”

A 2012 AHA scientific statement written by Allen and colleagues addresses decision-making in advanced HF, including decisions around palliative care.

“This is largely a reflection on supported decision-making more than it is a prescriptive document about what should be done,” Desai said. “It does discuss the idea of an annual HF review for every patient.”

During this annual review, the patient and clinician would discuss the patient’s stage in the disease process, how they are feeling, what their goals might be and what they might wish to do if their condition should deteriorate.

“It is an annual assessment of where patients are in their trajectory, and whether the balance of curative and palliative interventions should be adjusted,” he said.

As the knowledge of need for palliative care in HF patients increases, Teuteberg said this topic will likely be more extensively addressed in future guidelines.

“Palliative care will be more and more a part of most programs, and will eventually be encompassed into more guidelines earlier into the disease course, rather than just at its end stages,” he said.

Levels of palliative care

The need for palliative care in patients with advanced HF currently exceeds the number of palliative care specialists available to handle these cases, Adler told Cardiology Today.

“There will never be enough [palliative care physicians] because HF is just huge; it’s the most common reason for admission,” he said. “It will never be possible for us to just be dogmatic and say every patient [with HF] needs a palliative care doctor. That’s something that works in trials and doesn’t work in reality.”

A more realistic way of addressing this need, according to Adler, is to provide different tiers of palliative care based on the individual patient’s needs. The most basic level of palliative care is called primary palliative care, he said.

“Primary palliative care can be provided by someone like me; I’m not board-certified, but I know the general principles of palliative care,” he said. “This can be provided as first-line approach, similar to a primary care doctor doing palliative care.”

Adler said primary palliative care might encompass initiating end-of-life discussions with the patient, helping them make transitions or providing appropriate referral to hospice.

“You don’t need a board-certified palliative care doctor to do that,” he said.

Secondary and tertiary primary care involve more extensive and in-depth care provided by palliative care specialists.

“This is where palliative care can literally touch the patient and see the patient,” Adler said. “This would be for patients being considered for LVAD, maybe, or those dying on LVAD.”

Factors to consider

The decision to initiate palliative care should be based on various patient factors, including comorbidities, quality of life and the complexity of decision-making facing the patient, according to Desai.

“Questions a cardiologist may ask include how independent is the patient, how frail is the patient, what are the supports like and what is the infrastructure for the care of the patient,” he said. “One area in which palliative care has certainly become more important is helping to support patient decision-making around issues such as pursuing an evaluation for a [VAD] or a transplant.”

For patients who are not eligible for more advanced treatments due to age, comorbidities or other factors, palliative care can still help guide decision-making related to the progression of the disease, Desai said.

“Patients can discuss strategies for managing the disease as it approaches the end stage, the options for adjusting care preferences, their wishes regarding repeat hospitalizations vs. being managed at home and resuscitative interventions that they would or would not be willing to pursue,” he said. “Patients who have implantable defibrillators, as many of our patients do, can decide whether they might wish to make interventions to limit the potential for shocks which, as the disease advances, may be less likely to successfully bring them back to life but may lead to pain on the way to the end.”

According to Allen, it can be difficult to determine which kind of palliative care conversation to have with a patient.

“Unfortunately, predicting when an individual patient will no longer respond to oral HF therapies is often difficult until patients are extremely ill nearing death. Similarly, understanding which patients will do well after LVAD is equally difficult to predict,” he said. “This is the art of medicine, and in advanced HF, it looks like a Jackson Pollock [painting].”

For this reason, Adler said, it is useful to view palliative care as a continuum and to include the various possible outcomes and decisions in the conversation with all patients at a certain point.

“I would say patients with stage D advanced HF being considered for an LVAD or transplant, or those not eligible for these treatments, should ideally have the full range of palliative care,” he said. “Even if they don’t have problems now, they probably will in the future. In an ideal world, once those patients get referred to an advanced center, once we think they’re going to need either LVAD, transplant or hospice, that would trigger us to get palliative care involved.”

Teuteberg said it is important to remember that palliative care is not an “either/or” scenario.

“Palliative care can still play a large role in management of patient symptoms, even when we are increasing the intensity of our interventions,” he said.

Other issues that arise

Many patients with HF have an implantable cardioverter defibrillator in place to manage sudden arrhythmias and prevent sudden death. As HF progresses to the end stage, however, the lifesaving value of these devices often begins to diminish.

“The likelihood of a defibrillator successfully resuscitating a patient from a sudden death event goes down as the HF approaches the end stage. This is simply because the sicker heart responds less efficiently to the defibrillation,” Desai said. “Defibrillators are effective in helping to modulate the risk of sudden death in less sick patients with HF, but as the disease advances, the likelihood of successful shocks is less, and the likelihood of repetitive and ineffective shocks is greater.”

For this reason, Desai said, some patients may decide to deactivate the device in end-stage HF.

“This doesn’t hasten the patient’s death in any way,” he said. “It does remove a fail-safe, the defibrillator shock, and permits the possibility of sudden death without an intervening shock. The idea behind that decision is to limit the potential for painful shocks on the way to death that may not extend life, but might be uncomfortable for the patient.”

Besides the risk of causing pain to the patient at the end of life, an ICD that remains active after death may create further emotional anguish to family members, Adler said.

“For a long time, there was a push to have these conversations with patients, to make sure the devices are turned off, and rightfully so,” he said. “Otherwise, you have people who work for the pacemaker companies having to go to people’s houses and turn off the shocking defibrillator on their corpse.”

Yet, oftentimes, broaching the conversation of ICD deactivation with a patient can be equally difficult, Adler said.

“Say I recommended that someone get a defibrillator 3 months ago, and now, 3 months later, they’ve gotten worse, they’re sicker than I expected,” he said. “Now, I go to the patient or the family and say, ‘I think this should be turned off.’ This is stressful to an elderly patient. They’re thinking, ‘You told me I needed this to save my life. Now you’re saying it should be turned off? Why did I go through this?’”

As the patient’s HF becomes more severe, Allen said, an ICD does nothing to palliate the various worsening symptoms accompanying that progression.

“An ICD can abort dangerous ventricular arrhythmias that cause sudden cardiac death by emitting a high-voltage shock, but it does not improve cardiac function and, thus, does not reduce symptoms of HF or prevent hospitalization,” he said. “At some point, patients may no longer wish to avoid sudden death, or ventricular arrhythmia may only be a result of other, underlying irreversible illness. When this happens, defibrillation may no longer be desired or appropriate.”

Desai said the best time to introduce the topic of ICD deactivation is at the time of implantation.

“In practice, though, this often doesn’t happen, or it happens so remote from the time the patient actually confronts the decision to inactivate the device, they don’t remember it,” he said. “On the whole, the data would suggest that we discuss defibrillator inactivation rarely with our patients, and most patients die with an active defibrillator in place. Therefore, sometimes these patients get painful shocks right as they approach the end of life.”

Palliative care HF team

In keeping with a continuum-type approach to introducing differing degrees of palliative care, the specialists providing that care will also likely change at different points of a patient’s disease, Allen said.

“Various specialties may take a more central role in the coordination of patient care at different times in the disease span, often with transition of leadership from primary care to cardiology to palliative care,” he said.

Additionally, a palliative care team may, at different times, include a social worker, nurse practitioner and a psychiatrist/psychologist, Desai said.

“Not every cardiologist has expertise in delivery of palliative care, and not all are comfortable having these kinds of conversations with patients,” he said. “Social workers are often extremely helpful in these interactions, and we’ve leveraged that aspect to great benefit in our HF population. I would say there is probably also a focused role for psychiatry providers in this population.”

Adler said the role played by these providers often makes a big difference to patient care in ways cardiologists are not trained to do.

“In my practice, I have anecdotal experience, but I’m not trained in all these things, and they can be nuanced,” he said. “What makes the palliative care team so good is they have experience, resources and time beyond what most cardiologists can provide.”

Allen said although it is not curative, this team-based approach to palliative care can make all the difference in the life of the patient and family members.

“Shared ownership and collaboration around palliative care between primary care, cardiology and palliative care can lead to improved communication, understanding of patients’ goals and better end-of-life experiences,” he said. – by Jennifer Byrne

• References:
• Allen LA, et al. Circulation. 2012;doi:10.1161/CIR.0b013e31824f2173.
• Braun LT, et al. Circulation. 2016;doi:10.1161/CIR.0000000000000438.
• O’Donnell AE, et al. Late-breaking Clinical Trials. Presented at: Heart Failure Society of America Scientific Assembly; Sept. 17-20, 2016; Orlando, Fla.
• Rogers J, et al. Late-breaking Clinical Trials. Presented at: Heart Failure Society of America Scientific Assembly; Sept 17-20, 2016; Orlando, Fla.

• For more information:
• Eric David Adler, MD, can be reached at University of California, San Diego, 9500 Gillman Drive, La Jolla, CA 92037; email: eradler@ucsd.edu.
• Larry A. Allen, MD, MHS, can be reached at Mail Stop B130, 12631 E. 17th Ave., Academic Office 1, L15-7019, Aurora, CO 80045; email: larry.allen@ucdenver.edu.
• Akshay Desai, MD, MPH, can be reached at 75 Francis St., Boston, MA 02115; email: jyounghans@partners.org.
• Jeffrey Teuteberg, MD, can be reached at 200 Lothrop St., Pittsburgh, PA 15213; email: teutebergjj@upmc.edu.

Disclosures: Adler reports consulting for Medtronic. Allen reports consulting for Janssen Pharmaceuticals, Novartis and ZS Pharma. Desai and Teuteberg report no relevant financial disclosures.