Now that we’ve recognized the patient whose illness is approaching the terminal phase, and hence who may not respond well to aggressive curative care, what should we do with them?
Bad: Admit them, intubate them, line them up, write your note, go to bed.
Better: Admit them, line them up, consult Palliative Care, maybe make the patient a DNR after discussion with the family, write your note, go to bed.
Best: Have an honest discussion with the patient or their representative about what this admission is likely to hold. Once a shared mental model of the current situation is achieved, you can come up with a realistic plan that best serves the patient’s interests.
Successfully executing this last maneuver requires adroit communication with a distressed human being during one of the most difficult moments of their life. One misstep can capsize the whole endeavor, not only making the discussion futile, but potentially poisoning your future relationship as well—forcing a different provider to start later from scratch.
Start by reading our tips on family interaction, then with those tools in hand, let’s build our encounter.
The patient: who is the person in the bed?
As Hippocrates said, it’s more important to know what sort of person has the disease than to know what sort of disease the person has. Before the topic of diseases is placed on the table, you need to understand the patient. Ask open-ended questions; keep your mouth shut. If you don’t have the time, make the time. This isn’t an RSI.
Our patient histories typically go back to when the symptoms first began, but you need to know more than that. Since you’ll inevitably start by focusing on most acute changes, I recommend a reverse chronological pyramid. Start with the newest events and then explore backwards, broadening your questions as the clock rewinds.
- Start by asking about the patient’s admitting complaint.
- Next, ask about how they’ve been doing prior to the acute period, over the recent weeks, months, and years. How has their disease been progressing? How is their level of function?
- Finally, learn about who they were before their illness began. Who are they and what was their life about? What did they love to do, what was important to them, what made them happy?
Besides unlocking important insights into the patient’s values, this last question can pay dividends for you, too. Viewing patients as nothing more than a bag of assorted disease is a fast-track to burnout. When you learn that the “CHFer” is actually Mary Jones, a retired World War II nurse who loves to knit, argue, and repair old bicycles, it helps transform your work from “flesh mechanics” back into human healing. And that just might save you.
The disease: What matters to people?
Now that you understand who you’re treating, it’s time to talk about their disease.
When providers try to discuss the “big picture” with patients and families, the two sides often end up speaking different languages, and then wonder why they can’t agree. Communication starts with understanding.
As providers of critical care, we think in terms of interventions: we want to discuss drugs, tests, and treatments, their expected benefits, and their potential risks. But often, those aren’t what’s most important to patients. (What do many of them say when we consent them for basic procedures like a central line? “Do whatever you have to do.” It’s not about the details.)
Patients care about outcomes. They often feel that what happens in the hospital, whether good, bad, or ugly, is less important than what comes after. If there’s a good chance of a positive outcome, they’re willing to take a ride on the bull; if not, they’d rather pass.
What does this mean to you? It means that you should build a mental model that incorporates your understanding of both the chronic course of the patient’s disease and their superimposed acute critical illness, and then help the patient to share that understanding. This not only means describing how their current admission fits into the larger picture, it may mean explaining the nature of their chronic illness itself—something that may never have been done, particularly if this is one of the first times they have experienced major complications.
Don’t focus on specific interventions at this stage, if ever. Focus on building the mental model. Not only do many families ultimately not care about nitty-gritty details—like needles being painful or whether ribs get cracked during CPR—it’s manipulative to dwell on them, because we only emphasize those macabre aspects when we’re trying to push people towards a palliative route. The sole importance of interventions lies in how they might alter the later quality of life, such as the implications of a tracheostomy or a life on dialysis.
When working through third parties, such as family members, try to remind them that while their help is invaluable, their role is actually not to share their own wishes—it’s to channel the patient’s wishes. They just happen to know the patient better than you, and so are more likely to understand what they might want.
The plan: Make recommendations
Once you’ve come to an accord about the patient and their circumstances, it’s time to use your training and judgment to do something very potent: present some recommendations.
You can simply ask what they’d like to do, but that’s an unfair question, like asking a patient how deep to place their endotracheal tube. While the plan will be subject to discussion, you’re the expert here, so offer your expertise. Suggest a course that fits your understanding of the patient’s goals of care and then invite them to share their questions or comments.
Making it happen: A method
Look like you know what you’re doing. Be professional and present yourself well. Maybe throw on a lab coat. Per usual, gather all of the information needed to understand the acute picture.
THE INFORMATIONAL STAGE
Delve further into the patient’s recent history and their identity as a person. Listen more than you speak.
Broach the topic of goals of care and explain why the “default” of full curative management may not be the most appropriate route.
Offer recommendations and come up with a plan.
Consider this patient encounter. An 86-year-old woman is being admitted for pneumonia and sepsis, and you’re now meeting her family. Key moments are bolded.
YOU: Hi there, I’m So-and-so. I’m the physician assistant for the ICU, and I’m here seeing Ms. Smith.
PATIENT FAMILY: Hi. I’m GREG, her son. [shakes hands]
YOU: Well, the ER called us to see if we could bring her up to the ICU. I’ve been looking everything over. Are there any questions I can answer for you?
GREG: Well, uh, sure. Can you tell me what’s going on? I mean, I don’t know much.
YOU: Sure, I’d be happy to. Let’s find a quiet spot. [You bring him into a quiet, private room.] What’s your understanding so far about what’s happening?
GREG: They said she has some kind of pneumonia. Uh… is she going to be okay?
YOU: Okay. I’m going to tell you what I think is happening right now, but I’d love to get some more information first. Could you tell me a little bit about how things have been going lately, before she started to have the trouble breathing?
GREG: Oh, well… uh… she’s not been doing that well. Nothing really specific, but… she doesn’t really talk anymore. Sometimes she grunts a little. Most of the time I don’t think she recognizes us. Uh, she only really walks now from the bed to the chair, but we have to help her even for that, and she’s fallen three or four times the last few months.
YOU: [Nods and waits.]
GREG: Uh… she hardly eats now, we have to really force her, and sometimes she gets this wet cough afterwards that makes me wonder if she’s having trouble with her swallowing. She’s probably lost twenty or thirty pounds this year. [He stops talking.]
YOU: So she’s still living at home?
GREG: Yes, my wife and I moved in with her last year to help out when she started having more trouble.
YOU: How has that been going?
GREG: Eh… at first it was okay. But now she needs a lot of help, like practically doing everything for her, just to go to the bathroom, or get dressed, or eat a meal… we’ve been taking turns staying at home, but it’s hard. It’s hard. It’s starting to feel like she needs more help than we know how to give her.
YOU: I understand. Now, she’s been diagnosed with dementia, is that right?
GREG: Yes, Alzheimer’s, a few years ago.
YOU: And it sounds like you’re saying that over this past year in particular, things have started to get worse.
GREG: Yes, I think so. Well, I guess it started before that, but the falls, the… the just not doing anything… is more recent.
YOU: Okay, Greg. What about if we go further back? Ten, twenty years ago? What was she like before all of this began?
GREG: Oh… she was much different. Very active, very social, a million friends. She would go on walks every day around town, sometimes for miles and miles, visiting all kinds of people. She loved to chat, chat, chat.
YOU: Did she work?
GREG: Oh, yes, she was a secretary at the electrical company for over twenty years. After she retired she volunteered with a bunch of different community groups. She actually started her own charity that raises money to vaccinate kids in Africa. Her church still runs it.
YOU: And she was married?
GREG: Yes, almost fifty years! My dad died about five years ago. They lived in that house their whole lives.
YOU: Got it. Well, Greg, if it’s okay, I’d like to talk a little about what seems to be going on today, and then we can discuss out how we’re going to handle it. All right?
GREG: Yes, sure.
YOU: The truth is, I’m really worried about your mom. She’s very, very sick. She does appear to have pneumonia; based on its appearance and what you’re telling me, this is probably what we’d call “aspiration pneumonia.” You or I depend on the coordination of muscles in our throat to swallow food and secretions without them going down the wrong way and ending up in our lungs, but some people, particularly those with advanced dementia, can lose that ability. They end up sucking down material into their lungs that doesn’t belong there, which can turn into the lung infection we pneumonia. Her difficulty breathing, her fevers, her low blood pressure are probably due to that. Because of everything that’s going on, they’ve asked us to bring her to the ICU.
YOU: I’m really very worried about her breathing. She’s getting antibiotics, but in cases like this, some people need to have a breathing tube placed until the infection can resolve. She may also need a deep IV placed so we can give her medicine to keep her blood pressure up.
GREG: Okay, I mean, do whatever you need to do.
YOU: Absolutely. Now, Greg, I just described some of what’s happening today, but to understand it we need to look at the bigger picture, too. Your mother is here because of this infection, but I think she probably has the infection because of her dementia.
YOU: As you probably know, dementia is a progressive disease that has no cure. It’s characterized by slow, gradual loss of mental function, sometimes so slow you hardly notice, but over time the changes can become very severe. Early on, it’s often only memory that’s lost, but when it becomes more advanced, people start to lose some of their more basic functions, like the ability to talk and swallow.
GREG: Yes, we’ve certainly seen that.
YOU: The thing is this, Greg. The problems we’re starting to see in your mother tend to indicate that the disease is reaching a very advanced stage. Not eating, staying in bed, not talking, falling more often, difficulty swallowing—these often signal to us that a person with dementia is beginning to approach the end of their life.
GREG: [long pause]
GREG: Uh… are you saying she’s dying?
YOU: Yes and no. Is she going to die in the next few days or weeks? That’s very difficult to say; I hate to try and make predictions like that, because we’re often wrong. But would it surprise me if it happened? Not at all. [pause] I think what’s more important than the exact time is to recognize that dementia is a terminal disease. In other words, eventually everyone does die from it. It doesn’t stop their heart, but it takes away so many of the body’s basic functions that they develop medical complications that kill them. For instance, they can’t swallow or cough, so they get pneumonia. Or they become weak and start to fall, which can be very dangerous for the elderly.
GREG: So what does that all mean?
YOU: What it means is that we should take this all into account when we plan how to best help her. The issues that led to the pneumonia… they’re not going to get better. Unfortunately, we don’t have any way to stop or reverse dementia. If she were 25 and healthy, we would probably place a tube down her throat now and put her on the breathing machine. I’d insert that line to support her blood pressure, and we’d bring her to the ICU to give her really aggressive treatment. But there are other options as well.
GREG: How’s that?
YOU: Well, I told you that she seems to be approaching the end of her natural life. When that happens, we can sometimes prolong a person’s life with aggressive medical treatment, but usually not by very much. Often we just end up prolonging their dying process, and many people wouldn’t want that. For instance, if it’s possible to live for three months longer with every medical effort, but that entire time will be spent in the hospital, not everyone would choose that. Some people would! But it’s a personal choice.
YOU: In her case, if we do everything I said, she’s going to have a very difficult time. It will probably be quite hard to get her off of the breathing machine, and even if we do, the chances are good this process would repeat itself, because she’ll continue to aspirate. Most likely, she’ll end up needing what’s called a “tracheostomy,” or a surgical breathing tube in the neck, which will let us place her on the breathing machine whenever we need, and make it easier to suction secretions out of her lungs, since she’s not coughing them up on her own. Along with that, she might need a surgical feeding tube placed in her abdomen, since she’s having difficulty eating normally. She will almost certainly not be going home, but probably to a facility that can give her more advanced care. And it’s very possible that she simply won’t survive this hospital admission no matter what.
GREG: I don’t think she’d want all of that… but what else could we do?
YOU: Well, the alternative would be to continue to care for her, and do everything we can to help her, but rather than trying to “cure” her problems—which will be very difficult—we’d focus instead on making her comfortable, and optimizing her quality of life. We wouldn’t do things like the breathing tube that will prolong this process her body has entered. Instead, we’ll give her medicines so that she doesn’t have any discomfort, or anxiety, or feel like she’s short of breath. Once arrangements are made, she may even be able to go back home, or perhaps to a comfortable sort of facility that specializes in this kind of care.
GREG: And then… she’d die?
YOU: She will eventually die either way. I can’t give you an exact guess as to how long. If we focus on comfort, yes, it’s possible that she would die sooner, although not certain; sometimes people actually live longer when we aren’t subjecting them to so much medicalization!
GREG: I see.
YOU: So I guess what I’m saying is that I’m hoping you can help with this decision, because you know your mom, and I’m only meeting her today. I don’t know what she would want. If we treat her like a young person, and throw every test and treatment at her, that may give her the best chance of the longest life. However, it also may mean a lot of difficult, painful medical care. Even with all of that, it may not be successful, and no matter what, she’s not going to leave the hospital any better than she was before the fall. In fact, even if everything goes extremely “well,” she’s almost certainly going to be doing worse, and it sounds like she was already having a hard time. Recovering from all of this is a tremendous task even for young, healthy people. But in the end, some people would want to go through that process for the chance to get back to what they had before they came to the hospital, and others wouldn’t. So Greg, if your mom could talk to us now, what do you think she might say?
GREG: [Pauses; wipes away a couple tears. You hand him some tissues.] I don’t think she’d want to… to be kept alive on life support, and all of that. She used to say sometimes that if she couldn’t do anything but lie around like a vegetable, she’d rather be dead. I… but I don’t want to just… kill her.
YOU: I definitely don’t want that either. We have to remember that her disease is what’s making her sick; our only decision is how we choose to respond to it. And no matter what, I want you to know that we’ll be giving her every bit of help we can, with all the resources, specialists, and medicines we have to offer. It’s just a question of whether our goal is to prolong her life or make her comfortable, because we’ve reached a point where we can’t do both very well.
GREG: Okay. She’d want to be comfortable. I think… that’s definitely what she’d want.
YOU: All right, Greg. Then I’m going to make a few suggestions about how we proceed from here, and I’d like you to tell me what you think about them, okay?
YOU: I think we won’t do the breathing tube or any life support of that kind. No big, invasive procedures. We also won’t go too crazy getting a lot of tests or giving a lot of medicine that are meant to treat her problems. Instead, we’ll start her on some medications that relieve her work of breathing and help her relax. I think we’ll still bring her to the ICU for now, because we can give her a lot of attention there to make sure we’re controlling those symptoms. But I’m going to ask the case managers to get involved, and our Palliative Care team will come talk to you soon; they’re the specialists in this type of care towards the end of life. She may be able to leave the ICU soon to one of the regular private rooms in the hospital, and hopefully soon after that, she can go back home or to a specialized hospice facility. I’m also going to put down an order that if her heart or her breathing were to stop, we won’t push on her chest or place a breathing tube, which will probably be unlikely to benefit her. Instead, we’ll just take that as a sign that it’s her time.
GREG: Okay, I see. So… you don’t really know… how long… I mean, my sister and I should be here.
YOU: Honestly, if her breathing gets much worse, it’s possible that she will pass within the next day or two. But it’s also possible it will take weeks or months. That’s not in our hands. If it looks like it might be soon, we can definitely give you a call.
GREG: Okay. All right. Thank you.
After this discussion, you would follow your hospital protocol for making the patient a Do Not Resuscitate/Do Not Intubate with “comfort care” only. You’d go through the chart, discontinuing all orders that don’t serve to improve comfort. This includes medications, lab studies, diagnostics—everything.
Sometimes there’s hesitation about discontinuing life-prolonging orders that seem “benign,” i.e. not uncomfortable and generally without side effects. While these should be handled on a case-by-case basis, in general, it’s still reasonable to stop them.
Instead, opioids should be started for air hunger, benzodiazepines for anxiety if needed, and adjunctive medications for other symptoms (such as scopolamine for secretions). Specific approaches, such as boluses vs. drips and nursing protocols, are often institution specific; in general, start with modest doses, but don’t be afraid to escalate aggressively, titrating to comfort.
Disposition is also institution-specific. Some facilities have dedicated hospice beds. Otherwise, it’s often still appropriate to start with a brief ICU stay while everything gets situated; good palliative care can require a lot of attention.
Not all encounters will go this smoothly. In many cases, families will need more time to come to terms with what you’re saying; in those cases, aim for modest achievements (such as DNR status), and return later to continue the discussion. In other cases, resistance is stronger, and decisions will only be possible after a “trial” of ICU care for days or weeks have demonstrated futility. In that case, don’t bash your head against the wall at the time of admission—but it’s still best to lay the seeds. Frequent, repetitive family meetings with a consistent message are always the best approach.
Finally, the key points to remember for your next palliative care admission:
- Understand the admitting diagnosis, then the recent baseline, and finally the patient behind the disease.
- Help patients and families recognize the natural history of the chronic condition, and how this acute admission falls into that.
- If there are signs of poor prognosis, make it clear that the patient seems to be dying. Don’t try to prognosticate in days or months, but do prognosticate in terms of quality of life and general course.
- Recommend a path forward, including a focus on comfort care if it seems appropriate to you. Engage in a shared decision making process with the patient. Involve your consultants, but don’t depend on them to do this for you, especially not so early on.
Finally, try and remember that while these admissions aren’t our most exciting, they are right at the heart of what we do, and are often “harder” than offering curative care. If you can’t do the palliative care admission, or worse, simply choose not to bother—you’re not doing critical care.