Just as it is important for patients to collaborate with their healthcare team, it is also beneficial for caregivers to be involved early on.1 An open and honest relationship with providers can help optimize the care received by the person that you care for. Heart failure (HF) is a chronic, progressive condition. By establishing a relationship early on in the disease course, caregivers, who play a critical role as the condition progresses, can easily become more involved when things get more difficult.
Caregivers and patients are critical components of the healthcare team. Doctors, nurses, therapists, and others can all benefit from good communication about how someone is doing and ways they can work together to improve health status and quality of life.1-5 The caregiver can help implement the healthcare team's instructions about living a heart-healthy lifestyle. Often, they adopt the lifestyle for everyone in the household.5 The caregiver can assist with daily activities, managing often complex medication regimens, navigating the medical system, and communicating with a variety of different healthcare professionals.5
Meet the healthcare team
It is a good idea to attend patient appointments. The more you get to know the healthcare providers and the better informed you are, the better you will be able to participate in care. Sometimes patients are uncertain or unable to ask questions to help them understand what their provider is saying.2 Whether it is a friend or a family member, having another person at each visit to support the patient can serve to reinforce the information shared at a later time.5
Keep a caregiver’s notebook. Take notes at each visit so the person you care for can just listen to what is being said. Prepare questions in advance and bring an up to date medication list with you to appointments. Share observations about any changes in symptoms, medication adherence, and general lifestyle trends with the healthcare team.2 If you can accurately report symptoms or changes in their condition to the healthcare provider, it may result in adjustments in medication, diet, and exercise which could lead to an improved treatment plan.1,5 Heart failure treatment focuses on improving heart function, delaying progression, and managing symptoms. Early intervention can slow the progression of the disease and caregivers are often the first to notice and report the changes.5
Shared decision-making
Shared decision-making for people with advanced heart failure can make the end of life process easier.2 Patients and caregivers should discuss their preferences and share them with others on the team. Setting treatment objectives early, even for the just-in-case scenario, can alleviate additional stressors later in the caregiving process. Discuss these preferences and goals and which treatments or care options are the best matches. Heart failure care teams are experienced at having these kinds of conversations with patients and their families. They can facilitate the sometimes-tough decisions that have to be made.2 Participating in the decision-making process early on can simplify the process later.
Caregivers are crucial
Caregivers play a vital role in the health of those they care for. They can assist with daily activities, managing often complex medication regimens, navigating the medical system, and communicating with a variety of different healthcare professionals. They may be involved in meal preparation, transportation, as well as providing assistance with personal care and basic activities that someone may not be able to manage for themselves.5
The practical, medical, and emotional aspects of caregiving are all topics that can be discussed with the healthcare team. Sometimes these conversations can happen alongside the patient, other times it may be easier for the caregiver to discuss matters with the providers alone. The method of communication may change as the patient's needs evolve. The more the caregiver knows about the condition of the person they care for, the better care they can provide.4