by Richard O'Boyle, Editor
When a loved one needs home care, whether due to aging or an illness or injury, your natural instinct is most likely to help as much as possible. It’s hard to see someone that you care about struggle just to manage every day activities. Yet when you don’t see improvement, or sense that your loved one is struggling or not receiving the care he or she needs, it’s tempting to take matters into your own hands.
There’s no denying that family advocacy is important to those who need home care. Some people simply cannot communicate their needs effectively, or may underplay their needs for fear of being viewed as a burden. Having someone who can not only help with the care, but also speak up when necessary, ensures that the patient receives the best quality care.
The problem is that many family members inadvertently impede the progress of care in the name of “helping. There actions lead to conflict, misunderstandings, and in some cases, setbacks for the patient. Further complicating matters is that most people aren’t aware that they are a roadblock to effective home care. They honestly believe that they are helping, and usually have the best of intentions, and don’t see their actions as a problem. It’s only when there is a bad experience that they see the problems in their behavior.
Learning to identify the behaviors that are most problematic to care providers — and avoiding them — can improve the provider-patient-family dynamic and increase the likelihood of effective care.
Impediment #1: Wanting to Control All of the Care
Many patients need their family’s help. Family members may need to be trained to help with such equipment as catheters, or in wound treatment and care. However, patients still need to see their physicians, since certain aspects of care need professional involvement. Family members, no matter how much they want to help, cannot be in charge of all aspects of their loved one’s care, and must be willing to work with the team of doctors to develop an effective care plan.
One corollary to this problem is the issue of individuals conducting their own research on treatments and insisting that the medical professionals implement their findings. They might read about an experimental treatment online, or hear about something from a friend, and demand to know why their loved one isn’t being treated that way.
While providers welcome questions and ideas, there are generally reasons for individual treatment plans. The exception, of course, is when a certain plan clearly isn’t working, and the provider is unwilling to make changes. In general, family members need to understand their role and avoid rushing to judgment based on their own reading and research.
Impediment #2: Not Communicating with Providers
Communication between the patient, providers, and family members is vital to effective care. Home care providers rely on family members to communicate with them about their loved one’s care and progress. Tools like home health care software can help ease some communication issues; if both providers and the family members have access to the patient record, they can leave and read notes or review instructions to help prevent communication breakdowns.
Family members and patients have the right to ask questions and seek clarification from health care providers on issues related to their loved one’s care. You also have a responsibility to make sure that everyone has the information they need to make the right care decisions; for example, you should know which medications your loved one is taking and any pertinent medical history that could affect care.
Don’t be afraid to speak up, but avoid being accusatory or combative. Often, communication breakdowns happen because family members make statements or use a tone that appears to question a provider’s abilities, creating an adversarial relationship. When a provider feels attacked or questioned at every turn, care could suffer.
Impediment #3: Not Following Instructions
An important part of the success of any treatment plan is following the provider’s instructions. Missing medications, failing to do exercises, or not documenting information as requested can lead to setbacks or reduce the effectiveness of a treatment plan.
That’s not to say that the occasional mistake isn’t going to happen, but your role as a partner in care requires you to follow instructions as closely as possible.
When you want to be a partner in your loved one’s care, it’s important to follow instructions and communicate, and work with providers, not against them. Advocacy is important, but when your efforts become an impediment, it’s your loved one who suffers, so understand your role and be a part of the team.