PC-HEART was formed to achieve two primary goals.

PC-HEART was formed to achieve two primary goals.

1. To build the evidence base for palliative and supportive care in advanced HF through collaborative research and clinical trials including:
• Defining interventions for symptom management and to improve quality of life
• Identifying patient and family needs and how best to meet them
• Creating new communication strategies for patients and families about HF and preferences for treatment
• Understanding prognosis, frailty and likely outcomes of interventions
2. To create replicable models of care and education and test those widely through segments of the health care delivery system (hospice, hospitals, outpatient care: HF specialty practice, general cardiology, general medical practices)

To achieve these goals, we’re undertaking a variety of specific projects focused on:

• Communication: We need to learn more about patient preferences for information about heart failure and for involvement in decision-making regarding their care. Specifically we need to understand patient preferences for prognostic information, approaches to care and information about available therapies. We need to implement approaches to improve communication between clinicians and their patients. We will integrate knowledge about physician – patient communication into training for clinicians and tools to support communication with patients and their families.
• Expertise among healthcare providers: We identified knowledge and skills that nurses require to care for patients with heart failure, and created educational programs to address their needs. We need to implement the education and learn whether it improves care.

We created a survey for nurses to assess their perceived competence and their knowledge managing patients with advanced heart failure. The validation of this survey is published in Patient Education and Counseling; Volume 67, Issues 1-2, July 2007, Pages 3-10 (Goodlin SJ, Trupp R, Bernhardt P, Grady KL, Dracup K. Development and evaluation of the “Advanced Heart Failure Clinical Competence Survey”: A tool to assess knowledge of heart failure care and self-assessed competence)

The survey is posted here on the pc-heart.org website. Please contact Sarah Goodlin MD for permission to use the survey.

• Options For Care For Persons With Heart Failure Near The End Of Life: We need to identify treatments for patients with advanced heart failure in different settings and how best care can be coordinated between homecare, hospice care, the hospital and clinic settings.
• Relief of Symptoms from Heart Failure: We need to identify treatments that improve symptoms such as shortness of breath, fatigue lack of energy and pain. We need to identify when and how these treatments can be provided to patients to improve their function and quality of life. The PAIN-HF (Pain Assessment, Incidence & Nature in Heart Failure) Study funded by the Mayday Fund will identify pain, other symptoms and problems and heart failure status in 400 persons with advanced heart failure. This is the first step in understanding how to reduce distress from pain and other symptoms in advanced HF.

Comments

1. John Spertus — 17 February 2004 - 18:44

   These are terrific goals for this group. The product of your efforts will go far towards improving care for end-stage heart failure patients.



2. Erin Donaho — 24 September 2005 - 15:52

   I am delighted to have found this venue for furthering research in HF palliative care. I am Erin Donaho from the Heart Failure Center at Texas Heart Institute in Houston, and am interested in collaborating with HF centers/researchers around the United States to investigate HF palliative care— where we are now and where we want to be.



3. Sharad Jaitly — 09 April 2006 - 16:55
   HF is a rising epidemic unfortunately worldwide. We need to offer proper awareness to general population so that they can consult with cardiologists promptly and be treated. End-stage HF patients deserve compassionate dignified, right-respecting, symptom-abating care at home or hospice with clear advance directives to the caring family and doctors. Other intercurrent illnesses definetely impact on care and outcome of endstage HF patients as survival pattern and expectancy is the key that determines the palliative approach that the physician should take.

   I am noninterventional cardiologist consultant at the Palliative Care Institute of Calvary Hospital, Bronx, New York.



4. Mary Wassmann — 16 August 2007 - 11:37

   I am developing a program within our hospice which will focus specifically on end stage heart disease patients. I am trying to find models of care and best practices in symptom management literature. Is there anything available?



5. Sarah Goodlin — 30 October 2007 - 16:54

   Several organizations have developed approaches to managing symptoms in heart failure. Some examples of these are posted in the Hospice-PC Clinicians group. Any interested clinician can request membership in this group, and access these documents and tools.

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