April is National Health Care Decision Day.  Are you Prepared?


Imagine being a 27 year old married woman, working as a bookkeeper in Florida and enjoying life. One early morning, you collapse in your apartment, likely from cardiac arrest. Your brain goes without oxygen for quite some time and there is no longer any brain activity; your doctors declare you are in a permanent vegetative state. For the next fifteen years, your husband and your parents are at odds every moment of every day about what you would or would not want while you lay helpless in the hospital. Should they keep the feeding tube or remove it? Would you want to live like this or would you want to die? Time, money and energy are spent on court hearings and appeals. Eventually, the President of the United States is taking action. Is this what you would want? Unfortunately, this is exactly what happened to Terri Schiavo, a now-infamous landmark right-to-die case that lasted well over a decade from 1990 until her death in 2005. But did it have to be this way? What can you do to prevent something like this from happening to your family?

April is as good as a time as any to talk about advance care planning, especially since April 16 marks National Healthcare Decisions Day. It’s a topic most people understandably don’t want to discuss, but it is one of the most important discussions you will ever have, regardless of your age.

Many people falsely believe they have “checked” this box off their to-do list, when they complete a living will at the hospital before a procedure or draft a health care power of attorney in their attorney’s office, but in reality, that is only a minimal first step. The crucial part of advance care planning is having a deep, meaningful conversation with the people who will ultimately make those decisions for you.

When it comes to advance care planning, black and white isn’t best and usually a living will is just that. It provides narrow choices that might not always work in a particular circumstance. It is also very limited in its scope of when it can be applied. Usually it is best to have a health care power of attorney where you name an agent who you trust with your health care decisions. This document can help in more instances, such as the case of a stroke where someone is temporarily unable to make decisions, but will likely make a full recovery.

Documents are important, but if it’s difficult to start the conversation about what you would and would not want, consider some help from professionals. There are some great resources available on the American Bar Association website, including an interesting quiz you can take along with your agent to see if you are on the same page. Would they make the choice you really would want them to make? Think about meeting with an experienced elder law attorney who can provide some guidance on how to approach the subject and what has worked best for his or her clients in the past. Recently, a new trend of “death cafés” are popping up where passionate and trained professionals hold informal meetings to help reduce the stigma around talking about death and dying. Some of these professionals even have their own organizations where they meet with people in their homes and talk with them through the process.

So, as April 16 approaches, I hope you take a few minutes to consider the impact of National Healthcare Decisions Day. More importantly, I hope you take the time to open up the conversation about what you would or would not want with your loved ones. For anyone who has had to make this decision, they know how agonizing it can be, especially if they do not know or understand what their loved one would ultimately want.

If you need help understanding the resources available, please feel free to reach out to the PA Link to Aging and Disability Resource Center for a listing of services available in your community. Please call our toll-free Call Center at 1-800-753-8827 or email me at mbottorf2016@gmail.com.

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