ORLANDO, Fla. – It’s something most of us don’t want to talk about, yet, at some point we will all face it.
Death is a difficult conversation to bring up with family or close friends, but ask anyone who’s experienced the loss of a relative or spouse and they’ll likely tell you how important it is to prepare early.
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In the last year and a half, Solutionaries host Louis Bolden lost his mother to Alzheimer’s and his father to cancer within six months of each other.
In this episode, Louis explains how watching his own parents’ discomfort at the end of their lives made him want to explore end-of-life solutions.
He also sits down with a Central Florida man with terminal cancer to understand one way he is navigating complicated care and difficult conversations.
Medical Aid For Dying
Pain is common in terminal illnesses.
According to the National Institutes of Health, more than 70% of patients with advanced cancer experience severe pain.
Some states have legislated more end-of-life options and there are options like palliative care to keep people comfortable at the end of their lives.
It has worked for many people, but it’s not always readily accessible.
There is a growing movement in our country around “dying with dignity.”
“People want the ability to control their suffering at the end of life. But unfortunately, the issue of medical aid and dying has become very partisan,” said Kimberly Callahan, chief program officer with Compassion and Choices.
It’s a nonprofit organization that empowers everyone to chart their end-of-life journey.
Callahan said medical aid in dying is becoming more popular.
“And I think what you’re seeing is more and more people having personal experiences with the end of life, watching somebody that they love unnecessarily suffer right now,” she said.
Ten states and Washington D.C. have medical aid in dying legislation.
Florida, Texas, Michigan and Virginia are not among them.
But what is it?
Medical aid in dying allows a terminally ill person who has six months or less to live to request a prescription from their doctor for a lethal dose of medication.
They can self-ingest that medication to die peacefully in their sleep and avoid suffering — and they decide when.
But what if you have a terminal illness and you live in a state that does not allow medical aid and dying?
What solutions are there for you to be comfortable and not suffer at the end of life?
Palliative Care
Palliative care can come months or even years before hospice.
“It’s very different in that palliative care manages symptoms in the home — pain, shortness of breath, depression, nausea, vomiting — while a patient is still seeking aggressive treatments or aggressive therapies,” said Anita Robbins, a nurse practitioner for Amedisys Palliative Care.
She is caring for Joseph Nicolella, 74, who was diagnosed with stage four prostate cancer in 2020.*
Nicola went through a series of radiation and chemo treatments but nothing has worked. His doctor said he now has months to live.
“[I’m] pragmatic. I do a lot of thinking and talking... once you have this condition, the best you can do is to live a quality life for the time that you have when you know the end is coming,” Nicolella said.
Nicolella’s cancer treatments are physically tolling and often painful.
“I’m very well versed on which opioid works for what type of pain,” Robbins said. “So when something is not working patients can reach out to me and I can make that adjustment, whether it’s over the phone, whether it’s from my house, or whether it’s actually doing a visit in person.”
One of the drawbacks of palliative care is it’s not always available everywhere outside of hospitals.
For example, Robbin’s company, Amedisys, is the only company and Lake in Sumter counties that sees patients in the home.
It is important to know that palliative services are covered by Medicare with some out-of-pocket expenses.
*NOTE: Shortly after Louis Bolden’s interview with Joseph Nicolella was filmed, Nicolella entered hospice care. Our thoughts are with Nicolella and his family as they continue through this difficult time.
Decisions To Make Today
Bolden has advice he wishes he’d known before his parents passed away:
- Get your affairs in order now. We all think we’ll get to that later.
- Make decisions about what your priorities are at the end of your life.
- Record more videos of your loved ones. Bolden saved voicemail messages and said it’s nice to hear their voices but seeing their faces and hearing their voices is different.
If you have advice you’d like to share on this topic, go to the Solutionaries YouTube channel and leave your comments below.
Learn more end-of-life solutions including a story about how donating your body to science could help solve crimes all over the country.
Read more on ClickOrlando here.
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