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"Medical Journeys" is a set of clinical resources reviewed by physicians, meant for the medical team as well as the patients they serve. Each episode of this journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.

Palliative care has a perception problem.

It's often associated with end of life or advanced cancer. However, cardiovascular disease actually accounts for a higher proportion of adults in need of palliative care than does cancer (38.5% vs 34%), according to the .

Patients with heart failure (HF) have a median survival of about 5 years -- on par with many types of cancer, yet patients with cancer are much more likely to be referred to palliative care.

This supportive care is vastly in heart failure, as in other cardiovascular conditions. A large analysis of community and academic hospitals published in showed that, in comparison with cancer patients, those with advanced HF had palliative care initiated later during hospitalization, at a lower Palliative Performance Scale score, and more often while in critical care. Consultations that did happen primarily addressed care planning rather than the full spectrum of physical, emotional, psychosocial, and spiritual interventions that can be encompassed by palliative care.

An called for delinking palliative care (PC) from prognosis in HF. Disease course is much less predictable than in cancer, the group wrote: "Even though patients with HF often improve temporarily with aggressive diuresis and optimization of medical management, there is a high recurrence rate of worsening symptoms with a high hospital readmission rate in advanced stages. The PC team should get involved early during the disease course for symptom management and also for a smooth and timely transition to hospice for those patients who are not candidates for cardiac transplant."

The chalked low hospice referral rates and high-intensity care at end of life up to "health care professional biases and limitations in models of care rather than patient values."

Rationale for Palliative Care in HF

While frequently misunderstood as equivalent to hospice care, palliative care is simply care focused on improving quality of life, regardless of the treatment plan or prognosis. It doesn't preclude aggressive treatments or curative therapies like heart transplantation.

Thus, palliative care for HF should start well before the last 6 to 12 months of the distressing symptoms and pain that mark the final stage of this progressive disease.

Palliative and supportive care are recommended for all HF patients, which the guidelines note should include "high-quality communication, conveyance of prognosis, clarifying goals of care, shared decision-making, symptom management, and caregiver support."

Palliative care can help ease the fatigue, dyspnea, pain, and depression that diminish quality of life for patients with advanced HF. A in the Journal of Palliative Medicine pointed to improved quality of life and symptom control but also a 42% lower risk of rehospitalization.

In the , an interdisciplinary palliative care intervention for advanced HF improved quality of life, anxiety, depression, and spiritual well-being more than usual care alone. In the ADAPT trial, a palliative telecare intervention by a nurse and social worker -- who met separately with a primary care and palliative care physician and specialists as needed -- improved 6-month Functional Assessment of Chronic Illness Therapy-General scores among HF and other chronic disease patients by 6 points compared with the 1.4-point gain with usual care.

Palliative care has also been linked to lower cost of care.

When to Initiate Palliative Care

The guidelines specifically call for palliative care consultation at multiple steps along the disease trajectory, including before discharge for HF-related hospitalizations and especially in stage D patients being evaluated for advanced therapies.

The for HF called for at least annual preparedness planning discussions with patients that cover "clinical status and current therapies, estimates of prognosis, clarification of patient values and beliefs, anticipation of treatment decisions, and advanced care directives that identify surrogate decision-makers."

"Good HF management is the cornerstone of symptom palliation," the consensus decision pathway document added. "Meticulous management of HF therapies -- particularly diuretics -- is a critical component of symptom management and should continue through end of life."

Primary care and other physicians who are not specialists in palliative care shoulder most of the responsibility of coordinating end-of-life plans after ascertaining the values and goals expressed by the patient and family. Decision support tools, such as patient education , can help patients understand their options and frame conversations about preferences.

For example, inotropes can be used for palliation but carry risks for arrhythmia and catheter-related infections. Implantable cardioverter-defibrillators can prolong life with painful shocks when not desired.

Execution of an advance care directive "can be useful to improve documentation of treatment preferences, delivery of patient-centered care, and dying in preferred place," the HF guidelines note, giving this a class 2a recommendation.

Home-based palliative care may be an option to provide continuity of care. Then as the end of life approaches, shocking devices and mechanical circulatory support may be turned off and potentially life-sustaining therapies like intravenous inotropes and renal replacement therapy may be discontinued in the transition from care focused on quality of survival into comfort-only care. Other therapies may be initiated, such as opioids for refractory dyspnea. Timely referral to hospice is recommended to improve quality of life for advanced HF patients expected to live less than 6 months.

As evidence of hope but also room for improvement, the guidelines pointed to CDC data showing an increase from 2003 to 2017 in the proportion of HF-related cardiovascular deaths occurring in hospice facilities (0.2% to 8.2%) and deaths at home (20.6% to 30.7%).

Read previous installments of this series:

Part 1: Heart Failure: A Look at Low Ejection Fraction

Part 2: Exploring Heart Failure With Preserved Ejection Fraction

Part 3: Heart Failure With Reduced Ejection Fraction: Diagnosis and Evaluation

Part 4: Case Study: Lightheadedness, Fatigue in Man With Hypertension

Part 5: Heart Failure With Preserved Ejection Fraction: Diagnosis and Evaluation

Part 6: Medical Management of Heart Failure

Part 7: Managing Heart Failure Comorbidities

Part 8: Case Study: Heart Failure Exacerbation Due to an Often Overlooked Cause

Part 9: Device-Based Therapies for Heart Failure

Part 10: Managing Heart Failure Hospitalizations

Part 11: The Latest on Managing Advanced Heart Failure