PC-HEART conducted a number of projects directed at education, collaboration between members and research:


Survey of care provided in hospice for heart failure patients: The Medicare hospice benefit allows each hospice agency to decide what services they will provide, within general guidelines. Hospice companies provide nursing, social work, spiritual and personal care and medical oversight of care. All hospice companies also must provide volunteer services. Hospice companies are responsible for providing all medications and treatments that relate to the patient’s hospice diagnosis and to managing symptoms, but they can elect to not provide certain services. For example, some hospice agencies provide radiation therapy for cancer patients and others do not.

During 2002, PC-HEART worked with the American Academy of Hospice and Palliative Medicine (AAHPM), the Population-based Palliative Care Research Network (PoPCRN), the National Hospice Work Group and the National Hospice and Palliative Care Organization (NHPCO) in an important effort to characterize and begin to improve care for persons dying from heart failure. We surveyed hospice medical directors to identify what care they provide to heart failure patients routinely, what care they are unlikely to provide, what influences decisions about the care they provide, and what expertise and education their staff have about heart failure.

We learned that the care varies between companies. In general, all companies provide basic medications but only the largest companies provide more expensive or more sophisticated treatments.

In general few hospice agencies have heart failure expertise, and about one-third provided education about heart failure to their staffs. On average they provided about 2 hours of education per year.

Most hospice agencies do not have specific plans for care of persons with heart failure.
Most hospice agencies do not have plans to manage defibrillators.
We published our findings in the Journal of Pain and Symptom Management in 2005.

A link to the article we published is here. [3]

Education about Heart Failure for Hospice Nurses

With funding from the Hospice Foundation for Northern Utah we assessed the educational needs of hospice nurses about heart failure. Then we created and delivered education to nurses from11 hospice agencies in Northern Utah.
The survey we developed showed that hospice nurses lacked confidence in the assessment of heart failure patients, and they needed knowledge about heart failure and its treatments. In contrast heart failure expert nurses lacked confidence in end of life care and they had less expertise in management of symptoms in people with heart failure. After the education the knowledge about heart failure and confidence of the hospice nurses both increased.

We published the development of the survey in Patient Education and Counseling. The paper can be accessed here. [4]
Copies of the Advanced Heart Failure Clinical Competence Survey are available here.
Permission is granted for use of the survey in pilot studies. For other uses, please obtain permission from Sarah Goodlin MD.

Analysis of a National Database of Patients Hospitalized for Heart Failure

We evaluated the Acute Decompensated Heart Failure Registry (ADHERE®) to learn what characterized patients who were discharged from the hospital to hospice care. It turns out that the rate of hospice referral from the hospital is fairly low: about 2.5% of patients hospitalized for heart failure were discharged to hospice in this study.
The rates of hospice referral vary depending on where the hospital is located.
Patients who were referred to hospice care at discharge were older than those who went home, and had the longest wait in the hospital to receive their first dose of diuretic medication. They lost less fluid weight in the hospital than other patients. Their characteristics at the time of hospital admission were very similar to those of the patients who died in the hospital. The patients who were discharged to hospice received many fewer tests and invasive procedures than the patients who died in the hospital.
We published our findings in the Archives of Internal Medicine in 2006.
A link to the article is here: [5]

What information is given to hospices at the time a person with heart failure is admitted?

The information doctors and nurses in a hospice agency have about the person can make a difference in the management they provide in hospice care. We surveyed hospice companies to learn what information they believed was important, and how easily they received the information at the time they admitted a patient with heart failure to hospice. We discovered that a lot of information that would be necessary to provide care recommended by guidelines was not provided when patients with heart failure were admitted to hospice. Also, hospice staff did not recognize some pieces of information as important. To provide good care to people with heart failure, hospice staff need to receive basic information about their heart failure and treatments.
We published our findings in Congestive Heart Failure. A link to the paper is here. [6] 

Sarah Goodlin wrote an editorial for the Journal of Cardiac Failure summarizing some of the data and what next steps should be to improve care for heart failure patients in hospice. It will be important for hospital staff, doctors and nurses caring for people with heart failure and hospice agencies to partner to improve care.
A link to the editorial is here. [7]

Ethical Issues in Care for Persons with Advanced Heart Failure

PC-HEART sponsored a conference” Ethical Issues in Care for Persons with Advanced Heart Failure” April 17-18, 2006 in Washington DC which aimed to catalyze action by health care leaders and set an agenda to address:

  • The distribution of treatments, devices and technologies and the selection of patients to receive them
  • The distribution and range of palliative care provided to patients with advanced heart failure
  • Communication and decision-making with patients about heart failure course and prognosis, and specific approaches to communicating with patients about devices and advanced therapies.
  • The distribution of care and services to patients of differing age, race and social and reimbursement structure: specifically education, interventions and treatments.


  • George Mensah MD, Centers for Disease Control,Atlanta, GA
  • Arthur Feldman MD,Thomas Jefferson University,Philadelphia, PA
  • Sandra Dunbar RN , DSN Emory University School of Nursing, Atlanta, GA
  • Sana M. Al Khatib, MD,Duke University Medical Center Durham, NC
  • Lynne Warner Stevenson MD, Harvard University, Boston, MA
  • JoAnn Lindenfeld MD, University of Colorado Health Sciences, Denver, CO
  • Richard Rodeheffer MD, Mayo Clinic,Rochester MN
  • Jack Guralnik MD Ph.D., National Institutes on Aging,Bethesda, MD
  • Leslie Francis LLD, PhD, University of Utah School of Law, Salt Lake City, UT
  • Jon Costlow,Chf Inc
  • Timothy Quill MD,University of Rochester School of Medicine,Rochester, NY
  • Amber Jones, National Hospice Work Group; Consultant, Center to Advance Palliative Care
  • James Beattie MD,National Clinical Lead, NHS Heart Improvement Programme
  • Stephen Connor PhD,National Hospice and Palliative Care Organization
  • Barbara Riegel RN PhD,University of Pennsylvania
  • John Spertus MD,Midwest Cardiovascular Institute,Kansas City, MO
  • Reva Winkler, MD, MPH, National Quality Forum, Washington, DC
  • Donald E. Casey Jr., MD, MPH, MBA, Atlantic Health System, Florham Park, NJ
  • Mary Ann Baily PhD LLD, Hastings Center,Hastings on Hudson, NY
  • Marcel Salive MD MPH, Centers for Medicare & Medicaid,Baltimore, MD
  • Patty Orr RN EdD,Vice President, Clinical Integrity, American Healthways
  • Joanne Lynn MD, Rand Corporation, Arlington, VA
  • Harry R. Moody PhD, AARP, Washington DC

The conference stimulated research and ongoing work by many of its participants.

Sana Al-Khatib MD went on to describe the Unequal distribution and disparities in use of implantable defibrillators in a series of prominent papers:

James Kirkpatrick MD sponsored two subsequent conferences as a member of the University of Pennsylvania faculty.

Sarah Goodlin, Timothy Quill and Robert Arnold wrote a paper proposing a model for communication and decision making, published in the Journal of Cardiac Failure.

The Pain Assessment, Incidence and Nature in Heart Failure Study (PAIN-HF)

The Pain Assessment, Incidence and Nature in Heart Failure Study (PAIN-HF) found that pain was common in persons with advanced heart failure. While many patients had pain intermittently, it could be severe or distressing for some patients. Many patients had pain in several places in the body. More research will be needed to understand the causes of pain in persons with heart failure. The PAIN-HF study was an important step to understand symptoms in persons with advanced heart failure. The PAIN-HF study was published in the October 2012 issue of the Journal of Cardiac Failure.

Goodlin SJ, Wingate S, Albert NM, Pressler SJ, Houser J, Kwon J, Chiong J, Storey CP, Quill T, Teerlink JR; PAIN-HF Investigators.Investigating Pain in Heart Failure Patients: The Pain Assessment, Incidence, and Nature in Heart Failure (PAIN-HF) Study.J Card Fail. 2012 Oct;18(10):776-83. PMID: 23040113

Communication and Decision Making

Two outgrowths of the conference were projects still underway to describe decision making about left ventricular assist devices, and implantable defibrillators.
These projects are under way to develop models to improve participatory decision making.

We conducted focus groups of people with heart failure and their families to learn what is important to them in making a decision about an implantable defibrillator. We combined that information with expert input and what is known about implantable defibrillators to make a tool to help people make decisions. We are testing that tool now.