We hope you have enjoyed the information from our Aging in America conference presentation on “A Better Approach to Eldercare Planning“. An important aspect of that planning process is healthcare planning. With National Healthcare Decisions Day coming up on April 16th, it is a great time to reflect on the importance of healthcare planning and its key components.
To frame the issue, here are a few interesting facts from the National Healthcare Decisions Day website:
- Less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record.
- Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.
- Having a living will was associated with lower probability of dying in a hospital for nursing home residents and people living in the community.
- Patients and families are often not fully informed of the relevant risks and potential benefits of artificial nutrition and hydration.
Did you know? The Federal Patient Self-Determination Act requires all Medicare-participating healthcare facilities inquire about and provide information to patients about advance directives (states also mandate such requirements for various healthcare entities, such as home healthcare and senior care providers, under their regulations). Yet, as we can see from the statistics above (and our anecdotal evidence as patient advocates, working with clients and healthcare providers day in and day out), this is just a small step in the right direction. Many gaps and misunderstandings remain in this complex process of healthcare planning and decision making.
Though this is a complex topic, there are some key steps you and your family can take. Here are some tips from our advocates about both advance care planning and decision making:
- Get the key legal documents in place. Execute advance directives such as a living will and healthcare surrogate (also known as healthcare power of attorney). A durable power of attorney, though it covers finances and other practical decisions, is also a vital part of this planning process as these types of decisions often interrelate. Make sure to keep these documents in a handy place and provide copies to loved ones who are involved in your care. Get copies on the records with your healthcare providers.
- Talk about it. In reality, the conversations should come first. Sharing what you wish with your decision makers is vital to help them do their job should they have to act on your behalf. Talking with others can also help you work through your beliefs and priorities. This is not a single conversation, of course, but an ongoing one. The parameters and the way you feel will likely change. There are some great resources at the National Healthcare Decisions Day website (check “resources for family conversations”). Our geriatric care managers include advance care planning as one component of our comprehensive assessment, to find out the status of client’s legal documents and also offer help with these conversations. However, the patient advocacy extends over time as the client’s health changes. The advocate can not only encourage and mediate conversations, but help ensure clients and families have the information they need to think through the options and consequences.
- As mentioned above, asking the right questions is a vital part of the decision making process. If your family has prepared as mentioned, having the right information at the time of the decisions is the next step. This means asking healthcare providers to explain risks and benefits and asking for help when you don’t feel you really understand the prognosis and realities. When you are ill (or the worried family member), it can be difficult to process the information. The medical terminology is confusing to begin with and the decisions are often made under pressure. This is one reason why hospitals have developed resources like palliative care teams and ethics committees. This is the area where most families find huge benefits to having an independent advocate by their side as well. When you are diagnosed with a chronic disease or even in the initial stages of facing a more acute condition, gathering the right information up front can help you get the right plan in place and anticipate some of the future decisions.
- Know where to turn for resources. The National Healthcare Decisions Day website is a great place to learn more, and the web can also be a good place to research your loved one’s condition or a specific procedure or treatment. However, the web is also full of junk and can be a very scary place when you look up a condition (just try typing in some minor symptoms and see the potential diagnoses the web holds for you!). Seek out the recognized disease-specific organizations and experienced healthcare entities for legitimate information (your healthcare providers can often tell you the sources they’d trust). This also means putting together a healthcare team that is best for you…both in expertise and in personality. You need to have good partners in your care who work cooperatively (this means you too!). Your Aging Wisely care manager can help you build this medical team, as well as serve as a liaison to ensure coordinated care.
- Take a moment to revisit your goals, prognosis and plan. Everything can be so rushed when there is a medical emergency or urgent situation. Sometimes this will just be necessary, but it is also important at some point to pause and think about things (and ask those questions). We hear from adult sons and daughters time and time again who say, “I didn’t realize Mom was having all these tests and treatments. When we talked about what was going on, she didn’t really understand why. It went against everything she wanted.” The elderly parent is often spending most of their time in a doctor’s office, undergoing treatment or tests. Sometimes, this is the reality of fighting a condition, but many times it is because no one stopped to evaluate the situation. Your medical providers generally want to do what is best for you and comply with your wishes, but in this fast-paced system this sometimes requires an “advocacy pause” to think through the plan moving forward.
Need help with patient advocacy in Florida? Our award-winning* team is here to help! Call us at 727-447-5845 or contact us online for SOLUTIONS WHEN YOU NEED THEM!