Complex care can be difficult for patients and their families to navigate. For many, dealing with several different caregivers is a big part of the challenge. This can be particularly difficult for people who receive care at home.
If your loved one has a complex condition, there may be a large number of health care professionals coming and going from his or her home.
Are all of these practitioners providing high-quality care? Are they communicating clearly with one another to ensure your loved one receives carefully-coordinated treatment?
Can your family member keep all of the information they’re receiving about their health and medications straight? Can you?
In this post, we’ll look at a few tips that can help you manage it all.
1) Understand your Loved One’s Complex Care Needs
Knowledge is power. It’s a cliché for a reason.
The best way to advocate for a loved one with complex care needs is to understand their health conditions. The more you know about relevant symptoms, complications, and treatments, the better positioned you are to ensure that the care they receive is appropriate.
When a person has comorbid conditions, the potential for health complications is often high. The possibility of negative drug interactions may increase with the number of medications they have to take (this is no small concern: one in five older adults is admitted to the hospital due to medication).
For this reason, it’s important for patients with complex care needs to be supported by people who are knowledgeable about their condition.
Say your mother has diabetes and COPD. How can you evaluate her care if you don’t know what thorough, considerate care should look like for someone with diabetes and COPD?
How can you volunteer relevant information to her caregivers, or encourage her to make informed health decisions?
When it comes to information that may impact treatment, communication – between those receiving care, their family members, health care practitioners, and professional caregivers – is key.
2) Talk to Your Loved One Regularly
By establishing regular, meaningful communication with your loved one, you can play a positive role in managing her or his care.
It goes without saying that by connecting face-to-face, you can offer love and support to someone close to you. But frequent communication can also help in more concrete ways.
Often, complex care means a whole lot of different treatments and medications. For the person receiving care, the involvement of a family member in the decision-making process can be a huge relief.
That said, it’s important for family members to remember that they don’t always know what’s best. The true wishes and values of the complex care patient are, in most cases, what matter most. If (for example) your father is fairly independent, you can use regular check-in sessions to encourage him to be active in managing his own care.
Not only that, but seeing him will allow you to recognize changes in his condition. Hearing about his experiences with caregivers will give you a window into his day-to-day life.
This information puts you in a better position to offer advice and general support, while ensuring you can step in if you have to.
For those who aren’t able to make all of their own decisions, face-to-face visits are just as important. They provide support and (of course) keep substitute decision-makers informed.
Unfortunately, it’s not always possible for family to visit the loved ones they support in person. But communication technologies are adapting for people with complex care needs (including those dealing with intellectual disabilities, declining mental abilities, and mobility issues).
For everyone, reaching out – through videoconferencing platforms and other digital tools – is easier and more intuitive than it’s ever been.
3) Ask Agencies & Caregivers the Right Questions
Whether you’re trying to find the home care agency that will best serve your loved one’s needs, or assess the care he or she is currently receiving, you should be asking some serious questions.
If you have the option of selecting caregivers for your family member, you’ll want to start with research. Consider what you need to know. You may want to ask some of the following questions.
- How often do you deal with patients with complex care needs?
- How do they ensure the speedy delivery of information to outside specialists and providers involved in treating your patients?
- Do you have a way of checking in with patients when their caregivers can’t be there?
- How do you plan to share health updates and developments with me?
Unfortunately, those connected to services through the government don’t always have as much choice as they might like. But case managers at government-funded agencies (such as Ontario’s CCACs) try to take patient wishes into account. As much as possible, they also aim to improve individual care based on feedback.
Complex care can be… well, complex. But it’s important to get straightforward information from attendant caregivers, nurses, and specialists on an ongoing basis. Doing so will allow you to understand the quality of your family member’s care and follow important developments in her or his condition.
4) Strengthen Connections Inside the Circle of Care
You’re looking out for your loved one. There may be other family members who are doing the same.
There are also physicians, nurses, caregivers, and (likely) specialists who share your goal.
Namely, to provide the best possible health and quality of life for the person you care about.
This happens when they – and you – share relevant health information with one another and take positive action as a result.
This is what’s known as a circle of care.
But a circle of care doesn’t always work as well as it should. Communication breakdowns can lead to delays in care, harmful treatments, accidents, drug interactions, and other hazardous events.
Unfortunately, breakdowns are of particular concern in complex care cases, since there are often many health care practitioners involved.
The good news is, many health care providers are implementing communication best practices and taking advantage of technologies that can help. The digital world offers incredible possibilities for sharing health information and managing care – all without compromising patients’ security.
Talk to the people who provide your loved one’s care about how you can stay in the loop. Because you deserve to know what’s happening.
Feature Image: sergio santos