Tag: Jessica Zitter

The need to support caregivers

Rick Tash is the primary caregiver of his wife, Bambi Fass, who is dying of cancer. (still)

A new short film by Dr. Jessica Zitter and Kevin Gordon gives an intimate look at the toll involved in caring for a loved one at the end stages of their life.

Zitter happened upon palliative care, she said, before “anyone even knew how to spell the word ‘palliative,’” after she had “finally realized I’d been feeling a lot of burning walls of stress in the way that I had been practising medicine.”

A physician in Northern California, Zitter said, “I’d been treating patients like objects on a conveyor belt, instead of as people, and then began to practise, for the next two decades, palliative care and critical care at the same time, providing me with a strange vantage point within the world of medicine.

“I was inspired to write and share stories about what’s going on in hospitals, and about how we’re treating the seriously ill among us … and I also continue practising medicine.”

Zitter at first opted to educate the public via books, but then she encountered the power of film. “I realized, all these messages I’m trying to get across to people – about medical culture and about what we want to think about differently – they’d lend themselves so well to film, to show the experience of the patient. If a picture is worth 1,000 words, I realized that a movie is worth much more than 1,000 pictures.”

photos - Dr. Jessica Zitter and Kevin Gordon are directors of the short film Caregiver: A Love Story
Dr. Jessica Zitter and Kevin Gordon are directors of the short film Caregiver: A Love Story. (photos from Jessica Zitter)

In the 24-minute Caregiver: A Love Story, the audience meets a woman Zitter met at synagogue, Bambi Fass, and Fass’s husband, Rick Tash. Fass was dying of cancer and Zitter offered palliative care, but was refused, until Fass’s condition became dire.

“She called me and she was extremely sick and had deteriorated,” Zitter told the Independent. “She said she needed help and, that day, we got her into hospice care. She was so, so sick and in so much pain and suffering. That day, her life turned around for the better. All of a sudden, she was living again.”

That is when Zitter asked Fass if she would be willing to be filmed. “She replied, ‘I want to help someone else … if you want to write about me or anything.’ She knew about my book. That’s when we got a film crew. I thought the film would be about her, an amazing woman. What I didn’t realize then is that it would actually end up being about her husband as the main focus. I thought he was just going to be the guy who opens the door for the hospital, but he ended up being a central character.”

Fass had sat a few rows in front of Zitter at their synagogue. “She had a long braid of hair,” recalled Zitter. “I’d always see it from behind. I didn’t know her really, but I did wonder…. She was very, very sick…. I knew she was, because she had brain metastasis. She was vivacious and funny. She was staring her death in the face and she still had a sense of humour. She was a hero, a really fascinating character.”

It took almost two years to put the movie together and to fully grasp the importance of sharing it with the world.

“I never realized – the invisible public health crisis, family caregiver burden – how much this story needed to be told,” said Zitter. “The original intention I had for this film was to show how, once you make the right decision, everything will be OK…. I then realized how naïve that message was. It’s not that easy. You can make decisions that feel like they’re going to be the right choice for the patients, but will it be the right choice for the family as a whole? We have to be much more holistic when we think about our patients. It really needs to include our families as well.

“Even in a loving, caring and organized community like ours, we aren’t necessarily focusing on and supporting the family caregivers among us,” said Zitter. “And there are a lot of family caregivers – rising numbers – with very little support. An organized community has been unable to attend to this man [Tash] who is deteriorating in front of our eyes, because they don’t know what to do with him. We’re not primed to think about caregiver burden as an urgent task.”

Zitter found that her synagogue had no committee to assist family caregivers, and her hospital community was also not paying attention to caregivers.

“They’re an invisible workforce that we don’t pay attention to,” said Zitter. “We don’t attend to them, we don’t think about them, we don’t identify them, we don’t include them in the conversation. But they’re a huge part of our workforce … and we’re just ignoring them.”

Zitter’s hope is that people from various communities, including synagogues, churches and mosques, will watch this movie and then establish a workshop for family caregivers and identify ways to support caregivers. To that end, she has created a keynote message and an hour-long program to raise awareness of this crisis and do something about it.

“The best place to start is at caregiveralovestory.com,” she said. “You can go on the website and see public screenings that are coming up and other ways to watch the film yourself, whether bringing it to your organization or watching it privately.”

Currently, Zitter is working on a film about deathbed spirituality and prayer, as well as on a movie about Ethan Sisser, a Jewish Buddhist.

“Ethan was an amazing, amazing guy,” said Zitter. “He died about two or three months ago. He has a community following on social media. A lot of young people were just so moved by the way he viewed his death and the bravery and beauty of his final days…. We’re making a film about him, which will be beautiful and, hopefully, you’ll see that soon.”

Rebeca Kuropatwa is a Winnipeg freelance writer.

Teaching about death

Dr. Jessica Zitter has both written a book and a movie about death and dying. (photo by Rikki Ward Photography)

Dr. Jessica Zitter, who works as an attending physician at a public hospital in Oakland, Calif., struggled with her job’s protocols for years. Until the day a nurse opened her eyes to the possibility that there was a better way, one that involved more compassion in the treatment of patients.

Zitter comes from a long line of doctors.

“They were into the art of medicine,” she said of the mentors she had when she first began her studies. “By that, I mean the art of surgery and intervening, and of doing things in a very precise way. There was something about that that I found heroic, and I wanted to be part of that world.

“So, I went to medical school – pulmonary and critical medicine – which I thought of as the most heroic of the specialties. I went on to start to focus on the machines, technologies, protocols and things that were part of the trade of being a pulmonary critical care physician. I tried to really perfect them … [thinking that,] if I use these perfectly, I’ll be able to help a lot of people.”

But, as she went along, she started to think differently. At first, she suppressed the feeling. “It was truly uncomfortable,” she said. “It caused me a lot of suffering.”

Zitter was using techniques and protocols on people who were not going to benefit from them, knowing full well that they would not benefit from them. Not only was she following her training, but she also wanted to please her patients – give them mainly good news and information about various procedures, instead of telling them the whole truth about their condition.

“I didn’t want to tell them, ‘Hey, I don’t think you’ll survive,’” said Zitter. “I didn’t want to say that because it’s too sad. I would communicate about things that were more practical like, if this happens, we will try this.”

A pivotal moment

Zitter’s approach changed after an encounter in the intensive care unit with a nurse from the family support team, called Power to Care.

“One day, I was about to put in a line [catheter] into someone who was really, really sick and likely dying, and the woman who headed that family support team was standing in the doorway watching…. I was about to put the needle in and she put her hand up to her face and she said, ‘Call the police,’ on a pretend telephone…. She said, ‘Call the police. They’re torturing a patient in the ICU,’” said Zitter. “And that was my epiphany moment. All these moments, I had this doubt. This was like a relief – you’re right, I am torturing the patient. What the heck? There was a clarity there that was really powerful.

“But, the sad truth is that I still put that needle in. I still put that catheter in that woman. The force of what I call the end-of-life conveyor belt is so powerful … not only the conveyor belt itself, but the drive to ‘protocolize,’ heaping on treatments … the culture in the hospital. It’s hard to break out. It’s hard to stop and take a pause, and say, ‘Wait a minute. What the heck?’”

The intervening nurse, Pat Murphy, in some ways became Zitter’s mentor on what it meant to be a doctor.

“I came to it late and from a place of profound dissatisfaction and moral distress, and I was just extremely lucky that I happened to be in one of four hospitals where this movement was starting to take hold,” Zitter told the Independent.

“And, I happened to have been open to it,” she added. She was able to get over her “human defence of not wanting to look stupid or like I didn’t understand … and to be able to say, ‘OK. Teach me.’

“I feel lucky that those two things were in check at that time,” said Zitter. “Not to say that I wasn’t filled with shame and embarrassment about what I’d been doing all that time, but the psychology…. Once you admit there’s a problem, then find a way to fix it.”

After years of immersing herself in this new paradigm, Zitter felt ready to share what she had learned. She published a book about it, called Extreme Measures: Finding a Better Path to the End of Life, in 2017.

As she was writing it, Zitter realized that, if a picture can impart a thousand words, maybe a movie would be able to convey even more. So, she put together a 24-minute documentary, Extremis.

Of the award-winning film, Zitter said, “It really shows the issues that come up in an ICU…. There is also a discussion guide that goes with it, so people can watch it and then come away from it with some lessons learned.

“This movie reaches a wide audience about really advanced care planning,” she said. “A lot of synagogues are using it, medical schools and nursing schools.”

Death education

Zitter was asked to teach sex education at both of her daughters’ schools.

“I want them to be able to make the best decisions they can make about their bodies and their health, and to be empowered to live the best they can,” she said.

But what about death education?

Extremis came out in late 2016. “It was nominated for the Oscars and a lot of my kids’ friends were watching it. And all these kids were really blown away by the movie and they were having a positive response to it,” said Zitter. “It made me think, ‘Why the heck aren’t we teaching kids about death? Why aren’t we having a conversation in high school, just like with sex ed?’ So, a friend of mine designed ‘death ed.’ We did it in her kids’ and my kids’ schools. It was really impactful.”

Zitter would love to see such a class in every school in the United States and Canada, along with other heath education classes, so everyone can have the opportunity to learn about a range of issues and discuss them.

Both the teachers and the students appreciated the lesson on death education, said Zitter. “There were no negative responses. Although some kids cried, and it was terrifying at first, they would then say, ‘That was sad, but I’m OK.’

“I was like, ‘It is sad that we are all going to die.’ But, you know what? It’s really good for these kids too, [because] it’s part of life. If we pretend no one’s going to die and don’t let our kids go to funerals, etc., we aren’t doing anyone a service.”

So far, Extremis has been translated into 90 languages and has been shown in 160 countries.

“We’ve got to tell people what’s actually happening and try to understand,” said Zitter. “I use myself as a prime example…. Why was I putting that catheter into a woman I knew was dying? What are these factors that are propelling me to do things that don’t make sense to me? The idea is to be more conscious of it, aware of it, and change it.”

For more information about the movie and the book, visit jessicazitter.com. The film trailer can be found on YouTube.

Rebeca Kuropatwa is a Winnipeg freelance writer.