Doctors often take extreme measures to save patients who are dying, and who might wish to die in peace. A critical care physician discusses how doctors are learning to resist their impulses to over-treat.
- Dr. Jessica Zitter, author, Extreme Measures: Finding a Better Path to the End of Life
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Doing Too Much for Terminal Patients
Nancy Benson: Jessica Zitter wanted to be a doctor ever since she was a toddler and listened to her teddy bear’s heartbeat through her father’s stethoscope. As an adult she proudly followed in her father’s footsteps, but instead of becoming a surgeon like him, she decided to specialize in pulmonary and critical care medicine. In this environment she both witnessed and participated in extreme measures to keep patients alive.
Jessica Zitter: With all of the best intentions, which I have shared as I’ve gone through, we want to do everything we can to maximize life and to help people, and we’ve over the past almost hundred years been creating more and more aggressive treatments and technologies to keep the human body going and alive and doctors have gotten more and more specialized in our training and we’re focusing in more and more on each individual organ system or each very fancy gadget or catheter that we’re using. And we’ve unfortunately in doing that lost sight of the patient. It’s like using a microscope and not realizing that you’re touching the side of an elephant. You’re not realizing that you’ve actually got an actual being there.
Benson: Zitter is author of Extreme Measures: Finding a Better Path to the End of Life. In it she coins a chilling phrase to describe the kind of health care that dying patients receive. She calls it “the end of life conveyor belt.”
Zitter: The end of life conveyor belt is what I see as the default application of fantastic treatments that sometimes can be very helpful. But the default use of these treatments on everybody indiscriminately regardless of their prognosis of their likelihood of benefitting and so as a result, the end of life conveyor belt happens when seriously ill, terminally ill, frail elderly patients are, without any conversation, without any questioning, also put on this treatment at all costs consecutive application of treatments as each organ begins to fail and ultimately many of these people just eventually end up dying encased in a whole variety of machinery and technology.
Benson: Zitter recalls a day in the intensive care unit when she was trying to insert a needle into the neck of a dying woman who was on dialysis. At that time the hospital’s administration was trying to enhance communication in the ICU, so a communication specialist named Pat was on the unit taking notes on a clipboard.
Zitter: And Pat was there and they had won this grant that I didn’t know anything about and it was beginning of the palliative movement and we were going to try to enhance communication in the intensive care unit. And so Pat was all of a sudden all over the place telling me I wasn’t talking to this person correctly and I hadn’t informed this person of their prognosis and why was I doing this procedure when it wasn’t really going to help and this person was having pain and I wasn’t managing it and I thought she was very annoying. And I was getting ready to insert the needle into this woman’s neck and I look up and I see Pat standing in the doorway. She puts her hand up to her ear like a pretend phone and she says, “Call the police! They’re torturing a patient in the ICU!” And it was that moment that really I kind of credit as my epiphany moment.
Benson: What passed through her mind then were all the previous ten years of extreme measures making her patients suffer. And as she stood at the bedside Zitter suddenly realized she hadn’t even asked this woman whether she even wanted the catheter inserted in her neck.
Zitter: Maybe she wouldn’t wanted to have this catheter put in. Maybe she would have wanted to be allowed to die in peace. And at that moment I decided, you know what, I need to learn a different way, and I went to Pat and she became my mentor and that’s when I started myself starting to train and learn about palliative medicine. So now I practice both intensive care medicine and palliative medicine, and I feel that it has made me into a better doctor.
Benson: According to Zitter, to palliate means to cloak, to shield people from suffering.
Zitter: Palliative care doctors really learn how to manage pain and nausea and coughing and shortness of breath — any kind of symptom that you can imagine, physical symptom from disease, and then also spiritual crises and emotional distress, anxiety, depression – all of the things that come along with serious illness. It’s not just patients who are actually dying. There are many patients who benefit from palliative care who are not dying. Palliative care has a tremendous track record at improving these kinds of symptoms. When you get a palliative care team involved and somebody’s really got a lot of suffering, we have probably over a 90 percent success rate at managing and improving peoples’ quality of life so that they can go on to live the best that they can live until it is their time to die.
Benson: But what if the patient can no longer speak for him or herself? Zitter says that’s when the patient needs a surrogate decision maker.
Zitter: When patients can no longer speak for themselves it is their surrogates who get to speak in their stead and that’s why we really hope that those surrogates are really truly informed about that patient and what that patient would want in a whole variety of circumstances. But as you could imagine since we don’t talk about death as a society most of the time those surrogate decision makers have never have had a conversation and don’t know what that person would want and it’s really anybody’s guess. And a lot of times we defer to continuing to treat aggressively because the surrogate just says, “gee I don’t think they’d want this, but I’m not comfortable saying no, saying don’t keep this breathing machine in,” and so a lot of times we continue treating people aggressively because those conversations were never had and the family’s not comfortable saying, “I really feel that I know this person well enough to know that he wouldn’t have wanted this.” So it’s all about communication and clarity and getting these preferences and values out in the open.
Benson: However, Zitter says that even if a patient wants to stop extreme measures, doctors often don’t know how to de-escalate the treatment.
Zitter: De-escalation means, okay, you’ve escalated care to this level; you’ve got all sorts of things running and all sorts of drips and treatments and machines attached to the patient, and then you say, well, this patient is clearly not getting better. And the surrogate says to you, “I know my mother and she wouldn’t want to live the rest of her life on machines if she wasn’t going to get better. She just wouldn’t want that. She told me and she wouldn’t want it.” So we say okay now it’s time to say this person would prefer to be allowed to pass naturally. So then what do you do? You’ve got all these things attached to this patient, some of which are keeping her heart beating. How do you remove these things one at a time in such a way as to allow the person to die naturally? It’s so hard for us, every little thing that we remove feels like ripping off a Band-Aid and for doctors, too.
Benson: Despite that realization she says that unfortunately medical students today aren’t being taught how to de-escalate treatment, and that they need to.
Zitter: We can make things linger even when we have information from the patient or the family that this is not what the patient would want, to be propped up on these machines. And so we have to learn how to withdraw these types of treatments the same way that we so rapidly applied them. We need to withdraw them in a way that will also allow that person to achieve what was important to them.
Benson: In her book Zitter describes six steps patients and their families can take to achieve what’s most important to them and avoid that end of life conveyor belt.
Zitter: The six steps along the path are the first part of the appendix, which show you how to move yourself into a place of action and empowerment in order to get what you want. Ultimately in the current climate and the way we practice medicine now, in an ideal world it would be the patient who instructs us in what to do and a lot of times patients might disagree with what we think would be appropriate or what we would do if it were us in the bed. But we defer to that and we respect it. Hopefully that patient actually has been truly informed about what the prognosis is and what the benefits and burdens are of these particular treatments.
Benson: Intensive care in America can often be a grueling experience, especially for the dying, but according to Zitter, it doesn’t have to be. You can learn more about these six steps, our guest Dr. Jessica Zitter and her book “Extreme Measures” by visiting our web site at radiohealthjournal.net.
Our writer/producer this week is Polly Hansen. Our production director is Sean Waldron. I’m Nancy Benson.