Navigating End-of-Life Care: Lessons from a Daughter's Tragic Experience
2025.05.30
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, we’ll highlight key insights from Maggie's experience and offer
practical advice for your situation.
First, know that an advance
directive (also called a Health Care Power of Attorney) 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 illustrates the importance of advocacy. 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 we’ll show you how to get our 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 agent. This crucial first step
involves clearly outlining your wishes for end-of-life care in a thorough Life
& Legacy Plan. When you work with us to create your Life & Legacy Plan,
we 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 us, we 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 our
Life & Legacy Planning process includes regular reviews of your plan, allowing
us to update it as 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.
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.
Click here to schedule a
complimentary 15-minute consultation to learn more:
https://calendly.com/myachorlaw/15min
This article is a service of Attorney John F. Koenig, Anchor
Law, Life and Legacy Planning, LLC, a Personal Family Lawyer® Firm. We don’t
just draft documents; we ensure you make informed and empowered decisions about
life and death, for yourself and the people you love. That's why we offer a
comprehensive Life & Legacy Planning Session™, during which you will get
more financially organized than you’ve ever been before and make all the best
choices for the people you love. You can begin by calling our office today to
schedule a Life & Legacy Planning Session™.
The content is sourced from Personal Family Lawyer® for use
by Personal Family Lawyer® Firms, a source believed to provide accurate
information. 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.
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