On Frontline: Why Is It So Hard for Doctors to Talk to Patients About Death?

Screen shot 2015-02-10 at 11.13.30 PMVia PBS’ Frontline / Tim Molloy:

Dr. Atul Gawande just wanted to give a patient some hope. But he ended up saying something he would regret.

In FRONTLINE’s new film Being Mortal, Gawande remembers treating Sara Monopoli, a woman who was diagnosed with Stage IV lung cancer at 34, in the ninth month of her pregnancy. After giving birth to a healthy baby girl, Monopoli was diagnosed with a second disease: thyroid cancer.

In the film, Gawande tells Sara’s husband, Rich, that he knew she would almost certainly die of lung cancer, but he still gave the family hope that an experimental treatment might help treat both cancers. Rich surmises his family’s hope must have been infectious.

“You had joined us,” he tells Gawande. “We had our sunny disposition, hoping for the best.”

“The reason I regret it is because I knew it was a complete lie,” Gawande replies. “I just was wanting something positive to say.”

The conversation captures the dilemma suffered by doctors, families and patients with a terminal illness. The patient faces a painful decision: Whether to keep fighting a disease through every last treatment, trying to live as long as possible, no matter how painfully, or to live out the final days as well as possible.

Read more & watch video here:

“It was not so good.”

10460906_10152305021573611_7511640229892742644_o
My parents and I with my nephew at his preschool graduation in June 2014.

Earlier this evening, my very tired mom and I walked through the hallways of Hackensack Medical Center so we could meet my dad, who was being transported by paramedics, to a long term rehab facility in Fair Lawn, NJ: Maple Glen Center, a Genesis Healthcare facility.

On our way to the elevator, we encountered a super cute older gentleman who looked a lot like Fred Mertz (a character from 1950s sitcom, ‘I Love Lucy.’) He asked us who our patient was. I explained. He asked what rehab center my dad was being moved to, because his mother was in the hospital, and the facility she was in previous to her hospital admission, was “not so good.” Turns out it Care One Teaneck, which is a sister facility to Care One Wellington, where my dad was a patient in for about two and a half days before his blood pressure dropped due to dehydration and he was rushed back to the hospital. (Turns out the same happened with the cute little old man’s mom.)

This is our new reality.

This is what we have to deal with from now until my dad is well enough to come home, or goes to a place that is not home. People who have gone through the nursing home/rehab facility experience advise us to be there “at all times,” a near impossibility for my immediate family; we all work. (Today I filled out paperwork for my mother to take a leave of absence from her main part-time job, but it’s important for one of us kids to be by her side to provide her some respite.)

It’s really hard to swallow, but I have to be the stronger person. I have brothers, but I can see how this is harder for them. Two sons that always saw our dad as an active, strong, and funny guy, and how he’s a shell of the person he once was. I’m daddy’s little girl. I tell it like it is. I am there and am handling more of the being there, and paperwork of healthcare, because I must.

I cannot seem to form tears about my dad’s condition. I hold it in, save for every fourth day, when I can no longer hold it and something makes me angry to set me off. Yesterday, it was an argument with my brother about giving my aunt a ride somewhere.

I aspire to be like my mother.

I’ve always been used to her being a super strong woman who doesn’t scare easy. When I was 19, I feel asleep while I was driving and got into a terrible accident, dislocating my hip, breaking my wrist, cutting my forehead pretty deeply, and bruising my knees. I remember my dad crying in the intensive care unit, setting off my own waterworks, and my mom telling him to stop, that I’d be fine. She then grabbed by hand, gripped it, and told me to stop crying; that I’d be back to normal in no time. She was right. I was walking in less than eight weeks.

I really wish I could revert back to age 19, and my mom can once again be that warrior woman who, to this day, at age 69, works a couple of part-time jobs. It’s so hard to have a dad who looks scared and confused because we leave him at night, and a mom who is teary about her partner of 45 years (this Feb. 22!) not sleep with her at night.

It’s obvious I need to be that warrior woman. But it is tough. I may have a white collar job, and a master’s degree, but I feel I’ll never be their caliber of tough.

 

Science Daily: In U.S. First, Surgeons Implant Brain ‘Pacemaker’ for Alzheimer’s Disease

Ed. note: My dad had this surgery for Parkinson’s disease seven years ago. I’m glad they now offer it for Alzheimer’s!

ScienceDaily (Dec. 5, 2012) — Researchers at Johns Hopkins Medicine in November surgically implanted a pacemaker-like device into the brain of a patient in the early stages of Alzheimer’s disease, the first such operation in the United States. The device, which provides deep brain stimulation and has been used in thousands of people with Parkinson’s disease, is seen as a possible means of boosting memory and reversing cognitive decline.

Read more in Science Daily.

11-Year-Old Girl Fights To Find A Cure For Her Parents Diseases

Lauren Blum. Image via ABC 3/WinchesterAs many of you know, my father has Parkinson’s disease. He was diagnosed in his mid-to-late 50s.

I’ll NEVER forget the look on his face when he first told me he thought he had it. By that time, I’m pretty sure he had seen a doctor. We were eating lunch at the kitchen table and he looked at me and said his arm was trembling and he thought he might have something. I was CRUSHED but, as is my style, I showed little emotion and said, “No, you’re not sick. You’re fine. Maybe you just need to rest more.”

I didn’t want to believe it and, most of all, I wanted to aleve his fears.

He looked scared. And embarrassed. And he was right. He was soon thereafter officially diagnosed.

My dad was a very active man. He always worked two jobs. He loved to ride his ten speed bike (cycled competitively in his native Colombia) and lifted weights. Slowly, his ability to do all that would leave him. Today he spends most of his time watching soccer on TV in his bedroom.

Parkinson’s is a like a slow moving physical prison. It sucks. I wish there were a cure.

Research helps. My dad had deep brain stimulation surgery about seven years ago. While it has slowed the disease, and we are grateful for that, I read up on Parkinson’s news daily, hoping there will be a breakthrough.

Eleven year old Lauren Blum of the Winchester-area in Virginia is raising money for research– not only for Parkinson’s, which her dad has, but also for multiple sclerosis, which her mom has. The feeling of having an ill parent is hard to describe. It must be harder for someone so young! This story made me smile because of her positive attitude.

Check it out:

“Half of the money I raise goes to Multiple Sclerosis and the other half goes to Parkinson’s” says Blum. She was only a baby when her parents were diagnosed with their diseases.

“I always used to worry about were they going to die and what is going to happen. You could never really know what’s going to happen with these diseases except they can’t die. When I was younger, I didn’t understand that.”

See the video segment via ABC 3/Winchester here.

Ondatropica at Lincoln Center ‘Out of Doors’

Photo by Gina Vergel

Ondatrópica made its US debut at the Lincoln Center Out Of Doors Festival on July 27 and it was awesome, mostly because I was able to shoot photos right up front. Read Jon Pareles’ (New York Times) review of the show here.

This all-star band featured greats from the golden age of Colombian music including Michi Sarmiento, Alfredito Linares, Pedro Ramayá Beltran, Markitos Micolta and Wilson Vivero, alongside the two musicians who started this wonderful project, Will ‘Quantic’ Holland and Mario Galeano with their bands, Combo Barbaro and Frente Cumbiero.

I got to meet the very humble Quantic as he was manning the merchandise table, where I purchased the band’s self-titled debut album. I told him that his “Original Sound of Original Cumbia” and “Cartagena!” CDs mean a lot to me because my dad loves them and they help to transport him back to Colombia at a time when it’s not easy for him to visit his beloved home country.

My dad has had Parkinson’s disease for more than 10 years now and is quite immobile. He is the person who introduced my brothers and I to Colombian music as he’d blast his records every Saturday when we were growing up. It’s why my younger brother started DJing at 14. It’s why my older brother and I are insane fans of la musica de la costa. It’s why this music is in our blood.

One of the things my dad misses most in life is dancing to the wonderful music from his home country. So I was very happy to tell Quantic his CDs are on REPEAT at my parents’ home in New Jersey. He can’t quite dance; but he sure can bop to it and occasionally digs out his maracas when doing so.

Now my dad will have the opportunity to experience this new Colombian sound. Ondatrópica fuses old with new to create a progressive sound which mixes traditional Colombian styles such as cumbia, gaita and champeta with boogaloo, ska, beat-box, MCs, dub and funk. And we were quite blown away when they played a song with bits of Black Sabbath’s “Iron Man” in it!

This slideshow requires JavaScript.