How to Navigate End of Life Care
A Daughter's Heartbreaking Experience
As our loved ones age, it's natural to start thinking about how we can support them during their final stages of life. As Gen Xers and Millennials, many of us are finding ourselves in a new role—helping our aging parents plan for their future. Conversations about end-of-life care can be tough, but they’re more important than ever. Without a plan in place, the journey through end-of-life decisions can be confusing and painful for everyone involved. So, let’s talk about how to navigate end of life care for our loved ones.
Maggie Schneider Huston’s heartbreaking story about her father’s end-of-life care shows just how crucial it is to have everything in writing and to advocate for your loved ones. Let’s take a closer look at her experience and how we can avoid similar challenges by planning ahead.
Why You Should Care About Advance Directives (Yes, Now)
You’ve probably heard of an advance directive, but what exactly is it? Simply put, it’s a legal document where you spell out your medical care wishes if you can’t make decisions for yourself. It also names someone who can make sure your wishes are followed. Think of it as putting a plan in place before things get complicated.
Why does this matter for you? Many of us are sandwiched between caring for our own families and helping our parents navigate aging. Or, maybe you are caring for an aging spouse. Getting this type of planning done now will save a ton of stress and heartache down the road.
What’s an Advance Directive, and Why Does It Matter?
An advance directive is a legal document where you outline your wishes for medical care if you ever can’t make decisions for yourself. This document also names someone to speak on your behalf to ensure your wishes are followed. Having this document ready is a key part of planning for the future.
Now, let’s dive into Maggie’s story. Think about how you can prepare for a similar situation in your life or with your aging parents.
Maggie’s Story: When Wishes Aren’t Enough
In 2023, Maggie’s father, Terry, made sure to have his advance directive in place before a scheduled heart surgery. His wishes were clear—no machines, just comfort care if things didn’t go well. But after surgery, Terry’s health declined rapidly, and despite his wishes, his doctors weren’t on the same page.
Maggie and her siblings all knew and supported their dad’s wishes. They even gave one of his doctors a copy of his advance directive before the surgery. But after the surgery, Terry’s health went downhill fast, and things didn’t go as planned. His doctors argued that Terry could be kept alive with machines, but that’s not what Terry wanted. He repeatedly asked for hospice care instead, but the doctors didn’t listen at first.
It took Maggie and her siblings stepping in, showing the advance directive, and insisting on their father’s wishes before the doctors finally agreed to provide hospice care. Sadly, Terry passed away shortly after. While his wishes were eventually honored, the whole process was frustrating and heartbreaking for the family.
This situation shows that even with the right paperwork, you might still need to step in to make sure everything goes as planned.
How You Can Advocate for Your Parents
As Gen Xers and Millennials, we’re no strangers to standing up for what’s right—whether it's in our careers, social causes, or personal lives. That same energy can be applied when advocating for your parents’ end-of-life care. Here’s what you can do:
Know the details: Make sure you’re familiar with your parents’ advance directive and healthcare proxy. Don’t wait until an emergency to read through it.
Communicate clearly: Talk openly with doctors, nurses, and hospital staff about your parents’ wishes. If something doesn’t make sense, ask questions until it does. Don’t be afraid to ask questions.
Don’t assume anything: Just because one doctor has the paperwork doesn’t mean everyone on the team is aware. Double-check that everyone involved knows about the advance directive.
Be persistent: If it feels like your parent’s wishes aren’t being followed, don’t be afraid to escalate the issue to hospital administration or patient advocacy groups.
Document everything: Keep track of conversations, decisions, and interactions with healthcare providers. This can help if any disagreements arise later.
Build relationships: Nurses are often the ones spending the most time with patients. They can be key allies in ensuring your loved one’s care is respectful and aligned with their wishes.
Bring in extra help if needed. Don’t hesitate to consult a patient advocate, social worker, or even a lawyer if your loved one's rights are being ignored.
Advocating for someone in these situations can be emotionally draining, but it’s a crucial role in making sure their wishes are followed.
Steps to Help Your Family Avoid These Issues
It’s not just about advocating for your parents. As Gen Xers and Millennials, it’s also a smart move to start thinking about your own future. Life is unpredictable, and having your own advance directive and healthcare proxy in place can give you peace of mind, knowing that your wishes will be honored.
Here’s how you can set yourself (and your family) up for success:
Create an advance directive and healthcare proxy: It’s crucial to have a plan that outlines what treatments you do or don’t want. When you work with an estate planning attorney, you can get clear on your options, choose trusted advocates, and ensure your wishes will be respected.
Share your plan: Have open conversations with your family about your preferences. Make sure they understand why you’ve made these choices, and share copies of your advance directive with your loved ones and doctor.
Review and update: As life changes, so might your preferences. Regularly reviewing and updating your advance directive is a smart way to ensure it always reflects your current wishes.
By planning ahead, you’re not just preparing for how you’ll pass, but how you’ll live during your final days—ensuring your comfort and dignity.
We’re Here to Help
The idea of planning for end-of-life care might feel a little uncomfortable. But, it’s one of the most important things you can do for yourself and your family. When you have a solid estate plan in place, you can relax knowing your wishes will be respected, and your family won’t be left scrambling to figure things out.
At Mackintosh Law, PLLC, we work with you to create a plan to give you peace of mind and protect your family from unnecessary stress during difficult times.
Don’t wait until it’s too late—let’s create a plan that works for you and your loved ones. Schedule a complimentary 15-minute consultation to learn how we can help you prepare for the future.
This material was created for educational and informational purposes only and is not intended as ERISA, tax, legal, or investment advice. If you are seeking legal advice specific to your needs, such advice services must be obtained on your own separate from this educational material.
