End of life: No one wants to talk about it, but we will all face it. It’s a tough topic, and we will tackle it like we tackle all tough topics on Solutionaries -- by having the difficult conversation.
Here’s why I want to talk about it. In the last year-and-a-half, I lost my mother and my father within six months of each other; My mother died from Alzheimer’s, my father from cancer. Watching my parents’ discomfort at the end of their lives made me want to explore end-of-life solutions.
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.
There are options like palliative care available to keep people comfortable at the end of their lives. It has worked for many people. But it is not always readily accessible.
There is a growing movement in the United States around dying with dignity. It basically means maintaining autonomy and avoiding suffering.
Kimberly Callinan is the Chief Program Officer with Compassion and Choices, a nonprofit organization that empowers everyone to chart their end-of-life journey.
“People want the ability to control their suffering at the end of life, but unfortunately, the issue of medical aid in dying has become very partisan,” Callinan said.
Still, medical aid in dying is becoming more common, according to Callinan.
“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,” Callinan said.
Currently, 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 adult, who has six months or less to live, and meets certain qualifications, 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. They decide when.
But what if you have a terminal illness and you live in a state that does not allow medical aid in dying? What solutions are there for you to be comfortable and not suffer at the end of life?
We’re exploring palliative care.
Nita Robbins is a nurse practitioner in palliative care for a company called Amedisys.
“Palliative care is really months and years before hospice,” Robbins said. “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.”
She is currently caring for 74-year-old Joseph Nicolella.
“Three years ago, I was diagnosed with stage 4 prostate cancer,” Nicolella said. “Which means it had already spread. It’s already in the bones. It’s already moved about, yet I had no symptoms. I was playing golf five days a week and doing my thing.”
Nicolella went through a series of radiation and chemo treatments, but nothing has worked. His doctors say he now has months to live.
“Even though I have had numerous treatments, a lot of it is related to my genetics, so it’s not a matter of these things won’t work for other people, they just didn’t work for me,” Nicolella said. “Prognosis isn’t very good right now. I would say under a year.”
We asked how it feels to say those words.
“Pragmatic. I do a lot of thinking and talking with Ellen and now with Nita. I’m being a realist that once you have this condition, the best you can do is to live a quality life for the time that you have left,” Nicolella said. “You know the end is coming. Am I happy about it? No. By myself I’m not so happy but we’ve had lots of discussions.”
What makes him emotional is thinking about his grandchildren.
“You want to see your grandchildren, no matter how pragmatic I’m afraid of it ... Sorry,” Nicolella said through tears.
One of the benefits of palliative care is it allows you to continue with aggressive treatments if you choose. You can’t do that on hospice.
Nicolella is still fighting, and recently started a new treatment and says some days aren’t great.
“Every chemo, I can only speak from my experience, has a side effect of some kind or another,” Nicolella said. “It affects blood flow. It affects nausea. It gives you diarrhea. It gives you pain. They last for either four or five days, or six months.”
“It’s hard to live through those. The last one was horrendous,” Nicolella added. “I had nausea for six or seven days, anxiety attacks, terrible, but everybody goes through it.”
And that’s where Robbins comes in.
“I’ve been doing hospice and palliative care for the last 10 years. And all I do is manage symptoms in the home,” Robbins said.
“I’m very well-versed on which opioid works for what type of pain, and I have a lot of experience in that. So when something is not working, the patient 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,” Robbins said.
“So that’s very different than trying to get a hold of the physician,” Robbins added. “Often times, patients call they leave a message, and it might be three or four days before they’re able to get to their physician. So what does that mean? It means a patient sits at home and is in pain, or they end up going to the hospital.”
One of the drawbacks of palliative care is it’s not always available everywhere outside of hospitals.
For example, Robbins’ company, Amedisys, is the only company in Lake County, Florida, and Sumter County, Florida, that sees patients in the home, which is important for many people.
“I know in the hospital they have palliative teams that go around and see patients and see families. But because there’s so few palliative providers in the area, I think that’s why people don’t know it’s a service that’s even available,” Robbins said.
Nicolella said he was not familiar with palliative care.
“I got familiar with it because my wife pursued it. And she had read about it, heard about it and contacted a couple people,” Nicolella said. “But there wasn’t anything local. I didn’t want to do it. Because it sounded, like, ‘Here’s the end,’ palliative care is going to ease me into wherever I go. But what I learned from participating is that it made my life a lot easier. It’s still degrading, but made it a lot easier.”
This article is part of “Solutionaries,” our continuing commitment to solutions journalism, highlighting the creative people in communities working to make the world a better place, one solution at a time. Find out what you can do to help at SolutionariesNetwork.com.