Navigating End-of-Life Care: Lessons from a Daughter's Tragic Experience

In an aging society, you might find yourself facing difficult end-of-life decisions for your loved ones sooner than you expect. And when you do, you’ll realize the journey through end-of-life care is rarely straightforward. A recent and heartbreaking story published by Maggie Schneider Huston in Newsweek illustrates this fact. In this article, I’ll highlight key insights from Maggie's experience and offer practical advice for your situation. 

First, know that an advance directive is a legal document that outlines your wishes for medical care in the event you cannot make decisions for yourself. In most states, it also gives authority to a person or people you choose to act on your behalf and ensure your wishes are carried out. With that, let’s dive into Maggie’s story. As you read, consider how you might prepare for similar situations in your own life or the lives of your aging relatives.

What Happened?

Maggie’s story begins in 2023. Her mom died, and shortly after, Maggie’s father, Terry, revised his will and created an advance directive. He wanted to be entirely prepared for a planned heart surgery he was to have less than three months later. 

His advance directive reflected his desires that he’d been clear about - that he did not want to suffer when his life was coming to an end. He did not want machines to keep him alive. He only wanted to be comfortable. Maggie and her siblings understood and supported their father’s wishes. They gave one of his doctors a copy of his advance directive before the surgery. That doctor later admitted that he hadn’t read it. Terry’s other two doctors did not know he had an advance directive.

After Terry’s heart surgery, his health declined rapidly. As he was lying in the hospital bed, his doctors arguing that he could live with the assistance of machines, he told them that’s not what he wanted. He repeatedly asked for hospice care. Despite Terry’s wishes, his doctors would not order hospice care for him.

Maggie and her siblings quickly got involved and read Terry’s advance directive to the doctors. And after repeated requests, the doctors finally relented. He died shortly after. Even though Terry’s wishes were finally honored, it wasn’t without frustration and heartache for Terry and his family. 

It’s easy to see why the doctors insisted on keeping Terry alive. Their job, after all, isn’t to facilitate death but to promote life (no doubt the fear of being sued for medical malpractice was a factor, too). So it’s not a leap to think that if Terry didn’t have an advance directive, he would still be alive today, subsisting on the assistance of machines at an extreme cost to the family.

So, as Maggie's story illustrates, having an advance directive is just the first step. You also need to ensure that the advance directive is readily available and that your chosen advocates are prepared to fight for your wishes if necessary. It really helps to have a trusted lawyer by your side, as well. 

Advocating for Your Loved Ones

Maggie's experience with her father shows how important advocacy can be. If you find yourself in Maggie’s situation with a parent or other loved one, here are some strategies you can take to ensure their wishes are honored:

Be prepared to speak up and ask questions. If you don't understand something, ask for clarification. Don't be intimidated by medical jargon or feel embarrassed about asking for explanations.

Ensure that all members of the medical team have read and understood the advance directive. Don't assume that because one doctor has seen it, all of them have.

If you feel your loved one's wishes are being ignored, don't be afraid to escalate the issue to hospital administration or patient advocacy groups. Remember, you're not just a visitor - you're an essential part of your loved one's care team.

Keep a journal or log of all interactions with healthcare providers. Document who you spoke to, what was discussed, and any decisions that were made. This can be invaluable if there are disagreements or misunderstandings later.

Build relationships with the nursing staff. The nursing staff spends the most time with patients and can be powerful allies in advocating for your loved one's care.

Consider bringing in outside help if needed. This could be a patient advocate, a social worker, or even a lawyer if you feel your loved one's rights are being violated. Read on and I’ll show you how to get my help and support.

Take care of yourself during this process. Advocating can be exhausting and emotionally draining. Make sure you're eating well, getting enough sleep, and taking breaks when needed.

Your role as an advocate can be challenging, but it's crucial to ensure your loved one's wishes are respected. You can also prepare for your future so your loved ones have the support they need to advocate for you if the time comes.

How to Help Your Loved Ones Avoid Similar Outcomes

To help your family avoid the challenges faced by Maggie and her siblings, consider the following steps:

Create a comprehensive advance directive and designate a healthcare proxy. This crucial first step involves clearly outlining your wishes for end-of-life care in a thorough Life & Legacy Plan. When you work with me to create your Life & Legacy Plan, I can help you get clear on specific treatments you do or do not want, choose the right people to be your representatives, and ensure they understand and are willing to advocate for your wishes. All these considerations are critically important.

Communicate your wishes openly and distribute your advance directive. Have frank discussions with your family members about your end-of-life preferences. Ensure all relevant family members understand and respect your decisions, addressing any concerns or disagreements proactively. Once your wishes are clear, provide copies of your advance directive to your representatives, family members, and primary care physician. When you work with me, I will also maintain a copy of your advance directive. This wide distribution helps ensure your wishes are known and can be quickly accessed when needed.

Regularly review and update your Life & Legacy Plan. Life circumstances and health conditions can change, potentially affecting your end-of-life care preferences. That’s why my Life & Legacy Planning process includes regular reviews of your plan, so we can update your plan if needed. This ongoing process of review and update helps ensure that your end-of-life care plans always accurately reflect your current wishes and circumstances and that your plan will work when you and your loved ones need it to.

Finally, remember, end-of-life care isn't just about how we die - it's about how we live our final days, weeks, or months. By planning ahead and being prepared to advocate, you can help ensure that this time is as meaningful and comfortable as possible, aligned with your values and wishes. In doing so, you're providing a final act of love and respect, honoring a life well-lived right up to its very end.

How We Help You Navigate End-of-Life Care

End-of-life situations can be complex and emotionally challenging, as Maggie's story clearly illustrates. The best time to prepare for these difficult moments is now. As a Personal Family Lawyer Firm, we help you create a comprehensive Life & Legacy Plan that ensures your end-of-life wishes are respected, your loved ones are empowered to advocate for you, and your care aligns with your values when you need it most. Don't leave your end-of-life care to chance. Let us help you create a plan that works when you and your loved ones need it most.