Why Palliative Care Makes Sense for Outpatients with Advanced Heart Failure

Aim is to complete care with symptom management, decision-making help

In August 2015, Cleveland Clinic created an outpatient palliative care service embedded within its heart failure clinic. The innovative program for patients with advanced heart disease — one of only a handful in the U.S. — has been welcomed by cardiologists and patients alike.

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“The experience has been an eye-opener,” says Cleveland Clinic heart failure and heart transplant cardiologist Eiran Gorodeski, MD, MPH. “Our behavior has changed. We have become more attuned to the way we talk to patients and what we talk about.”

The outpatient program was a natural outgrowth of the inpatient palliative care program initiated when Cleveland Clinic was approved to use LVADs as destination therapy for patients with advanced heart failure.

“As we became more involved with symptom management for inpatients, it was clear we needed a way to follow up and ensure ongoing symptom management after they went home,” says Krista Dobbie, MD, the board-certified palliative medicine physician who runs the program.

A focus on symptom management

Patients are referred by their cardiologists based on the perceived need for palliative services. During its first 12 months, the outpatient palliative service provided care for 71 patients in 160 encounters. Of these patients, three were heart transplant recipients, 20 had LVADs and 48 had symptomatic heart failure without advanced interventions.

The patients’ primary complaints were the following:

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  • Fatigue
  • Pain
  • Dyspnea
  • Depression
  • Anxiety
  • Drowsiness
  • Lack of appetite
  • Nausea
  • Constipation

The high prevalence of pain was a surprise to the cardiologists. “Pain is not something heart failure docs usually ask about or view as a priority,” says Dr. Gorodeski, who also serves as Director of Cleveland Clinic’s Center for Connected Care.

Assistance with decision-making

Dr. Dobbie does not provide care for any aspect of heart failure or other cardiac disease. Rather, she manages pain and other symptoms — using opiates, antidepressants, laxatives, antineuropathic drugs, anxiolytics or other medications, as required — while also helping patients think through their medical treatment goals and assisting them with complex medical decision-making.

“A primary aspect of my job is to listen to patients and help them achieve their goals at the end of life,” Dr. Dobbie says.

A key part of that is helping patients make difficult decisions — a responsibility made easier when a patient is referred early to palliative care. “It’s important for us to develop a relationship with the patient,” she explains. “It makes it so much easier to talk about the patient’s wishes before his or her disease worsens.” She adds that asking patients what they feel is the hardest aspect of living with heart failure leads to a natural discussion about what they would like to do when their disease becomes too burdensome.

Such planning can never be predicted or taken for granted. One patient told Dr. Dobbie he wanted to die in the hospital because he knew the nurses well and felt they would take the best care of him. “But most patients want to die at home,” she says. “Sometimes we need to discuss how to make this a reality and put services in place to ensure that patients can die at home.”

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Dr. Gorodeski and his cardiologist colleagues were surprised to hear that many patients are reluctant to tell them when they’ve had enough intervention. They will, however, open up to Dr. Dobbie. “They say, ‘I don’t want to let down my cardiologist, but I know my body is failing and I don’t want to do this anymore,’” she says. At this point, most patients can be smoothly transitioned to hospice without hospitalization.

Building the service

With heart disease remaining the nation’s No. 1 cause of death, the need for more outpatient palliative cardiology clinics is assured. Cleveland Clinic’s goal is to continue to expand palliative medicine services to its regional hospitals and include a variety of patients with advanced illness.

“You don’t need the palliative medicine physician managing heart failure,” Dr. Dobbie says. “You need a provider managing the symptoms of heart failure and helping patients plan for their advanced illness. Our outpatient palliative cardiology clinic grew as a result of our inpatient consult service. It is this continuity of care that enables better quality of life and improved patient experience at the end of life.”