Heart Failure Navigator: Setting a Route | Caregiver Action Network

As the caregiver for a loved one who has been diagnosed with heart failure, it can be tough to wrap your head around what that means and how you plan for the future. It can also at times be challenging to convince healthcare staff of the diagnosis, particularly in emergency room settings, where they may not be as familiar with your loved one’s diagnosis. This info will help you better understand the diagnosis and help you as a caregiver speak with your loved one’s care team.

Getting to Know Your Care Team

What do we mean by “Care Team?” There may be a number of different individuals participating in various ways in your loved one’s care. Friends, family, community members, and the health care providers treating your loved one all have important roles to play.  You are a vital part of the care team, and more often than not, the one making sure everyone is working in unison.

One of your roles as a caregiver may be to ensure all members of the care team have the information they need to best care for your loved one, including keeping them informed in cases of an emergency. You may also need to continue to ensure everyone remains aligned with your loved one’s goals.

Members of the Care Team can include:

  • You and your loved one
  • Family and friends
    • Including neighbors, church members, and other individuals in your loved one’s community.
  • Healthcare Professionals
    • Primary Care Doctors
    • Registered Nurses
    • Cardiologists
    • Cardiac Care Nurses
    • Therapists
  • Professional in-home support

Resources for Communicating with the Care Team

Creating a Care Plan

What is a Care Plan? When your loved one is discharged, your loved one’s doctors and specialists will work with you and your loved one to outline the next steps of their care.

Your loved one’s care plan will take your loved one’s individual wishes and goals into account. It may include:

  • Medications, treatments, and therapies
  • Medical equipment that may be required
  • Instructions for ongoing medical appointments and check-ins

Ask Questions. It is important you and your loved one understand all aspects of the care plan. Ask questions so you both feel comfortable with the details. You are instrumental in making sure the care plan is followed and may need to explain it to other friends or family.

Be Your Loved One’s Advocate. One of the most crucial roles you can play in the development of your loved one’s care plan is that of advocate. You have special insight into your loved one’s day-to-day life and can make sure the following questions can be answered with a “Yes!”:

  • Does this care plan factor in my loved one’s goals or wishes for their care?
  • Are all elements of the care plan feasible?
  • Do you have ”buy-in” from other members of the care team?

Know What Symptoms to Monitor

Monitoring New Symptoms

Your loved one may begin to develop new symptoms, or changes in existing symptoms. It’s important to closely monitor, as these can increase your loved one’s risk of hospitalization. Your doctor and medical team can advise which of these you may need to keep an eye on.  

  • Keeping a journal to note these changes can be useful when sharing with other members of the care team.
    • What is the symptom?
      • Labored breathing? Chest pain?
    • When did the symptom start or when did you first notice a change, and how long has it persisted?
    • Have you tried to treat this symptom with any medications?

Crisis Symptom Reporting Guide

When your loved one is in a medical crisis, your ability to observe symptoms carefully and report accurately might be, quite literally, lifesaving. But it is a challenge to function clearly in a time of crisis. Here is a list that will help you remember what to look for during a crisis. You may want to read it ahead of time, and then tuck a copy in your patient file for later reference.

  • What time did the problem start?
  • What was he/she doing when the problem began?
  • Do you know or suspect what might have caused the problem?
  • What was the first symptom that you noticed?
  • What other symptoms/complaints do you remember?
  • Did the symptoms come on abruptly or gradually?
  • Was he/she given any medication or medical treatment just before the problem started? If so, what was it?
  • Did the patient say anything about how he/she felt when the problem started and/or as it progressed? What was it?
  • Does he/she have a history of this kind of problem? If so, what was the previous diagnosis?
  • What did you do to try to help him/her between the time the problem arose and the time you arrived in the ER or the doctor’s office? Did something work well? Seem to make things worse?

Managing the Symptoms

”My dad would struggle with breathing as a result of his heart failure and after a series ER visits where all he needed was to receive an oxygen treatment, I began being able to call 911 and paramedics were able to come out and provide him with the necessary oxygen, check his vitals and we were all together able to avoid a full-blown ER visit.” 

Treatments of heart failure: There is currently not a cure for heart failure, but the co-morbidities and symptoms can be managed by medications and procedures, in addition to lifestyle changes, such as diet, limiting salt intake, and exercise. 

Medications that your loved one might receive include:

  • Beta-Adrengenic Blockers
  • Calcium Channel Blocking Agents
  • Angiotensin Converting Enzyme Inhibitors
  • Angiotensin Receptor Blockers
  • Diuretics
    • For patients with fluid volume overload mineralocorticoid receptor antagonist.

Procedures: Individuals with heart failure may need other interventions beyond medications, depending on additional medical factors.

Lifestyle Changes: Based on additional factors (obesity, hypertension, and atrial fibrillation), your loved one’s care plan may include changes in diet and exercise.