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Barb's Story, Part 1 - WCAX.COM Local Vermont News, Weather and Sports-

Barb's Story, Part 1

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BURLINGTON, Vt. -

Patients reaching the end of life face many choices about how they want to live their final days. A Burlington woman wanted to share her story of trying to navigate those decisions hoping it could help others.

Barb Bardin reached out to us knowing her story is unique. Her choices may not be ones others would make, but she also knew what she was going through is all too common, a terminal diagnosis with time running out.

"I always ask the question how long? And it was three to five years," said Barb.

It wasn't supposed to be this way.

"Going into year 3, I really don't think I'll make it to the end of year 3," said Barb.

Barb knew ovarian cancer was going to kill her. How soon was the question?

When the Burlington business owner invited us to follow her through the end of her life, she had thought she had a few months to live. But suddenly the timeframe was cut to weeks. She rushed to UVM Medical Center April 1.

"Just couldn't breathe, so obviously I can't keep anything down and it's just more of the symptoms of getting closer to what's coming," said Barb.

What's coming is what the 63-year-old fought since her diagnosis with surgery and several rounds of chemo. But the prognosis for stage 3 ovarian cancer patients is not good and Barb's cancer had advanced.

"I tell patients with stage 3 ovarian cancer that they are treatable but not curable," said Dr. Cheung Wong, UVM Medical Center gynecologic oncology director.

Wong says the symptoms that first led to Barb's diagnosis are classic and frustratingly vague.

Feeling bloated, feeling pelvic pressure only eating a little but feeling full. Some women have urinary symptoms. Dr. Wong says about 80 percent of patients are first diagnosed already at stage 3, meaning the cancer spread out of the ovaries and into the abdomen. According to the American Cancer Institute, just 45 percent of women survive five years past diagnosis. It is the fifth most deadly cancer for women killing about 14,000 in the U.S. each year according to Centers for Disease Control and Prevention.

For Barb, chemo offered hope at first. But the cancer kept coming back and she stopped. Now, she gets sick every time she eats or drinks despite being hungry and thirsty. And there's a lot of pain from fluid building up in her mid-section.

Palliative Care Nurse Practitioner Lauren Bailey: How's your nausea now? 

Barb: It's fine, she gave me some meds.

Wong ordered a cat scan to see how the cancer had grown and how much time is left.

Barb: I was pushing and asking what does this mean? Is this truly the beginning? 

Bailey: Yeah. 

Barb: That's what they see.

Barb had already been busy planning for her death. A stay in the hospital this winter convinced her.

"I have my trust in order. I have my little, my little ashes box made. I have my party planned," said Barb.

A post death celebration and she arrived at the hospital this time making progress on another plan to end her own life. Work she started during that earlier stay with questions for the hospital's palliative care team.

"You were getting info on physician aid in dying," said Bailey.

Barb had decided to take a lethal dose of medication when the time seemed right.

Barb: Just to be able to make the decision yourself, you know? 

Reporter Kristin Kelly: And that doesn't scare you? 

Barb: Ohhh, it certainly does. But i have to be brave about it. I mean I don't really have a lot of options. And this is a good option.

Two years ago, Act 39 made it legal for terminally ill Vermont residents to get a prescription.

Wong had already signed off agreeing Barb was within six months of death and that she was of sound mind. Barb had filled out a written request signed by two witnesses agreeing her choice is voluntary. Under law she cannot have help taking the medication. But the law also requires an independent consultation with a second doctor at least 15 days after the first.

She's supposed to go to his office the next day, now she hopes he can make a house call to the hospital.

"In this situation I want to take care of myself, and just be with my family, and my dear sweet brother. This is the hardest, the biggest challenge, I've ever had to face," said Barb.

The next day, friends are gathering and Barb is working on her obituary.

"Just take care of my loose ends," said Barb.

The scan found cancer is covering her intestine, that's what's preventing her from keeping food or water down. And doctors say that and the fluid buildup will only get worse.

"It is very Barb to want to be in control or take control of herself," said Teresa Pete, Barb's friend. 

Barb built her career on being in charge and having a good time. She owned the catering company, "Let's Pretend," arranging lavish spreads, creative themes or just political ones.

"When the sun is out we're styling," said Barb back in June 2003.

She sold that business after launching another 12 years ago, the restaurant Splash at the Burlington boathouse.

"Somebody who is so full of life and here we are," said Andi Higbee, Barb's friend. 

Talking about how she wants to say goodbye.

"When you're in rough shape and you have no recourse and you know you're going to go, why not go out on top," said Barb.

That was the plan. Physically she was in a downward spiral, but she still didn't have the prescription and she worried about Montpelier.

"I want to get my hot little paws on this before the legislature changes anything," said Barb.

This session lawmakers were weighing whether to let some patient protections in Act 39 expire or take action to essentially maintain the law as is.

"What hope is there that all at risk Vermonters will be protected," said Guy Page from the Vermont Alliance for Ethical health care. 

But opponents wanted to revisit the law in its entirety. Raising concerns about vulnerable patients potentially getting pushed into taking their own lives and about the lack of data tracked by the state.

The Health Department only knows that 11 patients have gotten approval for lethal prescriptions over the last two years. Not whether they've actually taken the meds or what happened to the pills if they chose not to use them. Anecdotally, people involved in end of life care believe four people have died using Act 39.

"The only purpose of this law is to end in someone's death. To not know any of the circumstances of that death is frightening," said Lynne Cleveland Vitzthum from the Vermont Center for Independent Living. 

But lawmakers voted to keep Act 39 as an option for patients.

"It does give them control and she can say enough is enough," said Wong. 

Wong is used to tough conversations with patients and working with them through end stage cancer. But Barb was the first patient to ask him about Act 39.

"It does surprise me because I think there are a lot of patients who think about it.  And a lot of patients who will actually make comments like 'if I'm going to go I'll just use x or y.' I think that this story and Barb's story will actually bring this to light and maybe this topic will be less tabooed," said Wong. In part it is our fault as physicians, because many of us may not feel comfortable talking about it, because you're right, we are told we need to treat the patient, but death and dying is a part of life.

Kelly: Sounds like the weekend wasn't so great? 

Barb No not at all, nope. I'm having a real hard time. 

Six days into her hospital stay, Barb's symptoms have gone from bad, to better to much much worse. It's a common collision of advancing cancer, painkillers, anti-nausea meds and their side effects. For her care team it's a complex balancing act. And for Barb, it's a rough ride.

"I'm suffering, I've got to go, I want to go. I can't live like this, it's just, it's I look at the clock and I go, another day, of what? Being absolutely miserable and in pain. I don't want to be this, I don't want to be this," said Barb.

That second doctor gave Barb the lethal prescription. Her brother Dave found a single pharmacy in the state able to fill it and he paid the $5,000 for the pills. Vermont law requires private insurance to cover end of life medication like any other drug.

But Barb needs to get home to take the capsules. No hospital or hospice care facility in the state allows patients to use Act 39 on-site. And the dose of barbiturates prescribed is so large, she must take 100 capsules. She says even if she mixed the powder inside with liquid, she couldn't keep it down. For weeks, Barb hasn't been able to eat or drink without vomiting.

"I go to have a bit of water and I can't keep it down, nothing, and what am i going to do? Starve to death," said Barb.

Barb resisted at first, but then agreed to a procedure to drain fluid from her abdomen. It could provide pain and nausea relief for a while. 

"She's at a crossroads because she may believe she may not have a choice to act upon her plan," said Dave Bardin, Barb's brother.

The hope is it works and buys her time to go home.

We will continue Barb's Story Tuesday night at 6 p.m. Another reason Barb asked us to follow her was to raise awareness about ovarian cancer. The symptoms are vague, but Barb's doctor says women often notice them for a while before getting checked out. He says if your symptoms persist for three months, see a doctor. He also said it's important for doctors to listen to their patients and take those vague symptoms seriously.

Related Story:

Barb's Story, Part 2

Links:

Ovarian cancer:
http://www.nlm.nih.gov/medlineplus/ovariancancer.html
http://www.cancer.gov/types/ovarian

End of life planning, advance directives:
 http://healthvermont.gov/vadr/
 http://www.vtethicsnetwork.org/

Act  39:
http://healthvermont.gov/family/end_of_life_care/patient_choice.aspx
http://www.compassionandchoices.org/what-we-do/eolc-resource-center/

Hospice and palliative care:
http://vnavt.com/
http://www.hpccv.org/

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