Talking End-of-Life Care and ‘Extreme Measures’ with Dr. Jessica Zitter

Dr. Zitter at Highland Hospital in Oakland, CA (Photo by Pat Mazzera)

In the decades she’s spent working in intensive care units across the U.S., Dr. Jessica Nutik Zitter has seen a lot of patients’ final moments.

Some have been painful, long and drawn out, while others have been what she describes as “beautiful deaths” in which the patient is surrounded by family, cocooned in love during their last days.

But far too often, it’s other people who dictate how a patient dies—whether well-meaning but ill-informed family members or doctors who see the patient in his or her last hours.

We recently sat down with Dr. Zitter to talk about her new book, "Extreme Measures: Finding a Better Path to the End of Life", and to hear her advice on how people can start planning for end-of-life care.

Why You Need an End-of-Life Care Plan

A “collective tendency to ignore death” on the part of both patients and medical professionals leads to “tremendous suffering,” Zitter says.

Oftentimes patients facing death have never discussed their wishes for end-of-life care, and don't know about different options available to them -- such as hospice care or palliative care -- that would allow them to die in their own homes rather than in a hospital, hooked up to machines.

With no end-of-life care plan in place, many patients get funneled onto what the doctor calls the “end-of-life conveyor belt,” in which they’re intubated, catheterized and kept alive with the aid of machinery, often unaware that they’re dying. This can cause people to undergo significant pain and suffering while unable to communicate their treatment preferences. And without a plan, the dying patient's end-of-life care decisions are left up to the their next of kin or all too often, to doctors.

According to the Centers for Disease Control and Prevention (CDC), about a third of the 2.5 million people who died in the U.S. in 2010 did so in hospitals, despite studies showing that most Americans would prefer to die at home.

“I think the way people are dying in America is a public health crisis, and I know that we can do better,” says Zitter. In her book, the doctor and palliative care expert writes about case after case of patients in their final days, many of them caught in the aforementioned conveyor belt.

It’s a state of affairs that isn’t expected to improve anytime soon with an aging baby boomer population and a system in which both patients and doctors are ill-equipped to talk openly about the realities of death and the various end-of-life options available to those with a terminal illness, Zitter says.

Her book features some of the most heartbreaking cases she’s encountered over the course of her career, as well as ways individuals and families can avoid the so-called end-of-life conveyor belt and prepare for a “good death.”

Dr. Zitter offers the following advice for people who are just beginning to think about end-of-life care.

1. Accept that you’re going to die.

Our culture is death-phobic and aging phobic. From the days of yore, we’ve had this fantasy of eternal youth and eternal life. The fact is, now, in our modern world, we can enact that fantasy.

Accept that death is a part of our reality. There’s no magic pill – we can do a lot in the ICU, but we can’t fight death – it happens. So you have to be able to accept that, and when it actually happens you have to be receptive to it. You can’t ignore it, deny it, or not want your doctor to tell you the bad news. You want to really understand that you will ultimately die and when you start to die, you want that information.

2. Prepare for death.

You need to have done your homework. There are so many personal preferences that only you can know, and if you don’t think about them, clarify them and present them to the people around you and your healthcare team, how can they possibly know?

There are many different resources to do it – and I have a lot of them in my book –for eliciting and understanding your own preferences and then communicating them. There are games, there are documents, there’s all sorts of stuff.

You want this preparation step to be a fully fleshed out, [with] deep nuanced conversation over years, which will change as you get sick and as you progress through your life.

You have to do the brave and courageous work of preparing.

3. Communicate with loved ones and your doctors.

Communication is a two-way street. Patients don’t want to hear bad news. There are studies that show that people think doctors who break bad news are not as nice as doctors who break good news. There’s data on this. Patients want doctors with good news, and doctors want to be liked too. I’m not blaming anybody – I’m not blaming the patient or the doctor – I’m talking about the dynamic. It’s a problem – we aren’t wanting to hear the truth. And I get it. I don’t want to hear the truth either, but in this case the stakes are just too high not to hear the truth.

But you as a healthcare consumer can ask for the truth. You can say, “Doc, I’m not sure I want to hear this, but I need you to tell me what you’re thinking, and I understand that you may not be 100 percent certain.”

We know that when people do have these conversations...patients choose differently. They choose to use much less technology and they die better, according to their surrogates, and they don’t really live any shorter.

And people can have really beautiful deaths if they’re prepared, so the communication piece is really important going both ways. Both from the patient to their family members in this repetitive way of really fleshed out conversation and the patient getting information from their doctor and being really open to it – and from the doctor actually being willing to give the patient information. It’s a really complex system and right now, it’s not happening.

4. Collaborate on an end-of-life care plan.

"Collaborate" means you cannot expect the care plan to be driven by one doctor in this hierarchical system that we’ve been using for so long. The patient and the family have critical pieces of information, and you cannot make a healthy care plan unless you know it.

We’ve got to be collaborating, patients and physicians together as a group, in order to really come up with what the best thing is for each person. And if we continue this current system where the doctor’s driving, the patient is in the backseat and everyone’s coming along for the ride including nurses and social workers, and it’s just left up to this one doctor, the doctor’s not going to be able to do what the doctor needs to do. It’s just too hard to do as one person.

This needs to be more collaborative, with lots and lots of smart people and lots of information is flowing and most importantly, the patient is at the center of the whole thing.

We’re not doing it that way right now, but it’s doable, we can get to a better place. We all need to collaborate and step into this together.

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"Extreme Measures" can be found on Amazon.com.