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Nathan E. Goldstein, MD, discusses how to talk to patients with limited life expectancy.
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Nathan E. Goldstein, MD, discusses how to talk to patients with limited life expectancy.
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>> This is Ed Livingston, Deputy Editor for JAMA Clinical Reviews and Education. We have a two-part podcast regarding palliation for head and neck cancer. The discussion is about Chapter 18 of the JAMAevidence text "Care at the Close of Life." I'm speaking with Nathan Goldstein of the Mt. Sinai School of Medicine and the Hertzberg Palliative Care Institute. This is a complex topic and one that many physicians find vexing, so we divided this podcast into two sections. In this, the first podcast, Dr. Goldstein and I discuss how to talk to patients with cancer, who have a limited life expectancy.
In the second part of the podcast we discuss issues specific for palliative care of head and neck cancers. Dr. Goldstein, could you tell us a little bit about yourself and where you work? >> Sure, I am a palliative care physician and a geriatrician, and I work at the Mt. Sinai Health System in New York City, and I'm the chief of the division of palliative care at Mt. Sinai Beth Israel. >> This particular chapter is about head and neck cancer. Can you tell us, from your perspective as a palliative care physician, what's unique about this cancer as compared to some of the others you deal with?
>> Sure. I think when we think about solid tumors you know we think about a group of diseases for which we could offer lots of treatments for, but in general the trajectory is one of sustained function, and then once folks get to a period of time where they have advanced disease they begin to rapidly lose function over time as they are proceeding to end of life. The thing that makes head and neck cancer both different, and in some ways more complicated, is it's actually a relapsing and remitting disease.
So the classic patient with a head and neck cancer is a patient who will have an occurrence of disease and have either local treatment, which could be surgery and/or radiation. And then the disease will either go into remission or be quiescent for a while, and then at some point these diseases often recur. So rather it's months later or in other cases years later. And we see this sort of pattern of the disease relapsing and remitting, relapsing and remitting.
Often with more aggressive advanced local disease until at some point folks end up with metastatic disease. >> So head and neck cancers are somewhat heterogeneous. Could you tell us about the various forms of head and neck cancer and the various ways it presents? >> Yes, so head and neck cancer actually is a series of -- it's a catch-all term for a diverse group of primary malignancies that include malignancies of the oral cavity, the oropharynx, the larynx, the sinuses, and the skull base.
And so when we talk about head and neck cancer, depending on its primary origin, patients can have different symptoms. So sometimes it can be pain in the mouth. It can be a new lesion they notice in the mouth. It can be a new lesion noticed by a physician or a dentist. It can present as pain in the neck, difficulty swallowing, and for folks who have more advanced disease, it can actually present as shortness of breath or airway compression. So depending on exactly where the primary is and at what point it is presenting in their disease, it both has different symptoms and different presentations.
>> So along the way a patient probably has one of the symptoms you just referred to, sees their primary care clinician who probably refers them to an ENT physician who does a biopsy, makes the diagnosis. If it's a really bad tumor they probably go on to oncology and they get treatment. And if it's really, really bad it comes to palliative care. So where along that sequence do you like to have the patients referred to you?
>> Right, so palliative care is specialized medical care for people with serious illnesses, and the goal is to improve the quality of life for both the patient and the family. Palliative care is appropriate at any age and at any stage in a serious illness and can really be provided together with curative and disease-directed treatments. When we think about it in terms of head and neck cancer, in general, we like to meet these patients earlier on in their disease course. Now if folks have a single lesion that will be treated with topical agents, then in general, we may not need to see them.
But as patients have either recurrence or more aggressive disease or progressive disease that will require procedures that will have either morbidity or risk of mortality, that's when we need to see them. So we think of head and neck cancers on a continuum. I'm always happier to see patients earlier so we can form a better relationship with them, but in general, we tend to see patients when they're later in their course not because they're dying, not because of nothing to offer them, but because they're going to have significant symptoms and may need some help making decisions.
That's one of the things that makes head and neck cancer so different. For example, we will see many patients in the hospital with significant symptoms, who are undergoing active treatments and possibly curative treatment but will have either a large surgical procedure or may have significant symptoms from either chemotherapy or local radiation. And we will work with either the primary oncologist or the primary head and neck surgeon or both to provide control of symptoms.
>> So I'm a general surgeon, and I've dealt with this quite a bit -- not head and neck cancer necessarily but other kinds of cancers, and there's a general tendency to call in palliative care towards the bitter end when you're going to hospice and you're looking for kind of the terminal end of life planning. Is that what you tend to run into in your practice? >> Unfortunately, we do tend to see that palliative care is called either late or very late or very, very late. Now palliative care is on a spectrum with hospice.
Hospice is really for patients who are dying. Palliative care is for patients with serious illness at any point in their illness, the goal of which is to improve quality of life and symptom control. I actually think that head and neck cancer is such a great example of how palliative care can partner with a solid tumor oncologist and head and neck surgeon to provide symptom control so patients can do well and get out of the hospital.
The classic patient that I think of is a patient with either local or regional recurrence, who is having significant symptoms, who needs pain control, control of anxiety and depression, clarification of goals of care, but at the same time as the surgeon is planning on taking them to the operating room. So I can think of many cases where we're called not because the patient is dying, not because we can't offer more things for them, but we know it's going to be a long road.
We know that they're going to have significant symptoms, pain pre-op, pain post-op, residual pain, issues around the field of radiation, side effects from chemotherapy. The goal is always the same. The goal is to get them into a lasting remission if not cure, but we're going to partner with the head and neck surgeons and the oncologists to assure that symptoms are controlled so patients can get through their treatments.
>> So I tell you, you have my vote because both my mother and brother died of cancer. And from my own experience from the patient's perspective what I learned was that no matter how well prepared you are things get very hectic and confusing as you approach the end. So I think it's really a great idea -- I think it's really a good idea to get palliative care involved early in the course you can develop a plan, even if you're not executing that plan, because you really need to have a plan in place.
Because no matter how well prepared you are, things do get very, very crazy towards the end. Is that consistent with what you would like for your referrals. >> Absolutely. I mean one of the core tenants that we think about in palliative care is the idea of hope for the best, plan for the worst. So when we talk about communicating with patients and families, you know, the image people have is that palliative care is the grim reaper. We only come in when patients are at the end of life, and that's really not true.
So what we will come in and say, and again, in head and neck cancer it's a great example, we are here to help you. We are here to help your family. We are here to partner with your surgeon and your oncologist to make sure your symptoms are controlled and you have the best quality of life as you're going for either curative or treatment to get your disease in remission. A certain percent of patients won't do well, so we need to have a scary conversation for just a few minutes about what happens if you're one of those patients that don't do well.
So that way if your family has to make difficult decisions, they'll at least know what you want. Because I really hope you're going to get better and we're going to partner with everyone else in your team to make sure you get the best care you can and that we control your symptoms. But sometimes things don't always go well, and it's really helpful for the medical team and your family to know what you want if things don't go well, even though I know that can be a really scary conversation.
>> So that kind of leads into the next thing I really wanted to ask you about because I, in my career, was always admittedly terrible at talking to patients about dying. I always felt very uncomfortable with that conversation. How do you approach your patients in terms of your conversations? What do you tell them when you're discussing end-of-life planning? >> So I'd like to actually start by telling you what we don't do because there is this image that palliative care in the world goes into patients' rooms, walks in, and says, hi, I'm Dr. Goldstein, you're dying of your cancer.
In fact, we never do that. The first thing that we do is we walk in and we ask patients what they know about their illness and what they want to know. And then we can use that information to really titrate the guidance that we give them. So I will ask patients what they understand about their illness, what their hopes are, and how much information that they'd like to know. We also ask who else they want to be involved in the conversations because these can often be scary conversations.
Once we -- and then we ask them questions about where they think their illness is going to go and what the purpose of the treatments are. And then we begin to explain where they have a good understanding and where we might need to clarify some understanding. In terms of telling patients that their disease may not be curable or that they may die of their illness, that's never where we start. But it is certainly a conversation that we have often where we have to explain to patients that their illness is advanced or progressing despite medical treatment.
Whenever I tell patients that, the first thing I do is pause, let that sit for a while, and ask them how they're reacting to it and what their thoughts are. I'll say things like, are you surprised by that? Is it what you thought we were going to say? Is it something that you knew was happening and you just didn't want to talk about? Those kinds of questions. And then we can go on to have a conversation about what that means. And again, we always let the patient guide us. Sometimes I have patients who don't want to hear anything else and sometimes I have patients who will really immediately go on to ask questions about things like life expectancy and where they might want to be for their final weeks or months.
So one of the core elements that we do is in palliative care when we talk about where patients are on this trajectory is really listen. Listen to both what they're saying and what they're asking and more importantly what they're not asking and what they're not asking and what they're not saying to us. >> So one of my experiences is the patient who says nothing and along the way is also really not accepting their diagnosis or their prognosis.
And you get the sense when you're talking to them that they just -- it just is not sinking in that they're going to die of their disease and they don't want to deal with it, they don't want to talk about it. I've had that experience many times in my career with these patients, and it's very much a one-way conversation and you know you're not really getting through to them, and you know they're not really being realistic about the disease. How do you approach that scenario? >> So one of the things that we find in conversations with patients with serious illness is that we're actually having two simultaneous conversations.
We're having a cognitive conversation and an emotional conversation. And physicians in particular, though in general in the world of medicine, we are not good with the emotional conversation. So we will want to have a conversation, you know, the cancer is back, the cancer is progressing, the chemotherapy isn't working. This is what's going to happen. This is what your prognosis is. This is what your life expectancy is. And we continue to give patients cognitive information.
At the same time, there's an emotional element to these conversations that we are not good about checking in with. For example, we rarely say things like I've just given you some news that may be unexpected. What are you feeling about that? We can say things like this must be really difficult to hear. We may ask things like does this match what your understanding is of your illness?
And really responding to their emotions. I will give you a very concrete example. If a patient says to me, "Dr. Goldstein, I'm worried the cancer is back," the answer to that question should never be, well, we'll get a CAT scan to see if it's progressed. The answer to that question should always be "tell me more about what you're worried about." Because until I understand what their concern is, it's very hard to give them the information they're looking for.
And that's where we can see a mismatch. Right? When the patient says to me, "Dr. Goldstein, I'm worried the cancer is back," I don't know if that means I'm worried I'm going to die, I'm worried I'm going to be in pain, I'm worried I'm not going to make it to my son's graduation. Each of those actually requires a different answer, and if I assume they're asking one question when actually they're asking another, no matter what information I give them I'm not going to "move them forward in the conversation" because I haven't quite figured out what it is they're worried about or what they're asking.
Many times what we see, and in palliative care we're called for patients in denial. And as it turns out, many times patients understand what's happening; they either don't want to talk about it or they don't want to talk about it right then. In medicine we assume that in 30 minutes a patient should be able to go from the idea that we're going to cure their cancer to not only can we not cure their cancer and that they're dying but we want them to be thinking about hospice.
And when they can't make that tremendous frameshift in 30 minutes, we assume they're in denial when, in fact, we know it can take many, many conversations before patients actually begin to understand how sick they are and where they are in their point in their illness. >> So that's really very helpful. I was -- you were talking, I was thinking really what a physician should be thinking about is goals, expectations, and fears -- GEF or something like that.
Is that -- does that capture what you're -- >> I think that's right. I mean, you know, what we ask patients is what are you hoping for? What are you afraid of? And sometimes we ask what is the fate worse than death? Because when you ask patients what are your goals for your medical care, the answer is always the same. I want to get better. Right?
>> Right, yeah. >> The question I hear all the time is do you want everything done? And I have never had a patient and family say to me, you know what, Dr. Goldstein, you're really busy today, you don't need to do everything for us. Right? Patients and families always want everything done. And so we have to reframe how we're asking that question. >> That's really important because as a surgeon we're the ones who get called to execute that everything, and sometimes that's what -- you're exactly right.
That's what patients are asked and they say yes. And then when you come and talk to them about surgery and they understand what that's all about, they say no, that's not what I want. >> Right. So let me give you some -- one problem is that question most often gets asked first in the emergency room. Right? And so you have a patient who is in pain or short of breath but regardless is scared. And when you say do you want everything done? What they -- they don't know what that means, but they do know that the state they're in now is not one that's acceptable to them or not tolerable.
I mean that's why they came to the emergency room in the first place because something was wrong. And then we say do you want everything done, and they just want to feel better right. And that's actually a different question. So then they say yes I want everything done and then that becomes perpetuated throughout their entire hospital stay. Right? Because no one sits down and says, well, you know, when they asked you in the ER did you want everything done, what exactly did you mean by that? Another great example is we say, you know, if your heart were to stop do you want us to try and restart it?
You know, most patients are going to say yes to that. They're going to say, yeah, my heart's pretty important. I think you should restart it. However, when we ask the question like this, well, given how advanced your cancer is it's very, very, very unlikely that we can restart your heart if it stops. And if we can restart your heart, it's very, very, very, very unlikely that you'll come back to being the person that you are now that could interact with your family in a meaningful way.
Given that, what are your thoughts about what we should do when your heart stops? Then they'll say, well, if I can't interact with my family in a meaningful way, or if we say it's very, very, very unlikely you'd ever come off a breathing machine and you might end up living in a nursing home attached to a machine unable to interact with your family in a meaningful way, you may get a very different answer than the question of "do you want us to restart your heart if it were to stop." And I think that's a great example of where, instead of focusing on treatments, we focus on outcomes and then we'll get very different answers from what patients and families may want.
>> So essentially you're saying you need a very specific conversation about very specific events, treatments, and outcomes and not sort of a general, as you said, not general "do you want everything" because everybody does. So your advice is to be specific, is that correct? >> Well, I think we need to be specific about what is important to patients. So for example, when a patient says to me "my goal is to be able to interact with my family in a meaningful way," then I could say, well, given how advanced your cancer is if your goal is to be able to interact with your family in a meaningful way, if you get so sick your heart were to stop it's unlikely we can restart it.
It's unlikely that -- and if we can restart it, it's unlikely that you'll end up in a state where you can care for yourself, be independent, and interact with your family in a meaningful way. Then once we know what their hopes are we can tailor treatments to that. I do have patients who say to me all the time, "Dr. Goldstein, it's in God's hands, another day is another day, quality of life for me as -- is another day where my heart is beating." That may not be what I want for me, that may not be what I would want for my family, but it does make medical decision making in that patient much clearer and helps me understand how to approach conversations with that patient about what will or won't get them to their goals.
>> That's really very helpful. Let me switch gears a little bit. So how do you approach a conversation about hospice? And I ask because when my mother was dying of cancer hospice was presented to me as -- in a very, very awkward way and it was -- we were told the insurance company will pay for everything, but you're not allowed to have any testing or any new medications. She could continue getting the treatments if she wanted, but basically we're told they're very few options for dictating any care.
And that was a very unappealing conversation and unappealing choice, and we elected not to do it and this was in her last few weeks. So how do you explain hospice to people? >> When I talk about hospice, it's never where I begin the conversations. I really begin these conversations by figuring out what patients want and where they are in their illness. Now, right, because I think of two different groups of patients. I think about patients for whom we have treatments available that may have some benefits, but patients may elect not to have them.
They may say I've had enough, for whatever reason, I don't want any more treatments, I just want to focus on comfort and quality of life. And then there's another group of patients for whom I may not have options at all and where I will say, you know, unfortunately, given how advanced your disease is, we don't really have any options to cure or treat your disease. That could be for cancer or heart failure or end-stage lung disease, regardless of what the disease is. And then the conversation that we were to have is what's important to you?
And when the importance is quality -- quality of life and comfort and symptom control, that's when we can introduce hospice. And when I introduce hospice, I talk about hospice being both a philosophy and an insurance benefit that essentially provides a package of services for folks who are nearing the end of their lives. I explain that hospice can be delivered in many settings. Hospice can be delivered at home.
Hospice can be delivered in a hospital setting. And hospice can be delivered in a facility or a nursing home. And it gives -- depending on what patients want, how much family support they have, and where they want to spend their final days or weeks of life, hospice will provide a package of services, a safety net, if you will, to keep them in that environment and keep their symptoms controlled. In general, hospice does not have patients come back to the hospital unless it's to focus on intense symptom control.
Patients going on hospice must be willing to forego treatments aimed at curing their disease or at prolonging life and must be willing to focus on comfort. >> Yeah, that's very helpful because I am -- that -- SO I appreciate your indulging me and deviating from head and neck cancer in general because obviously I've struggled with this my whole career. And I think what you just said to us about how to speak to patients is extremely helpful.
So thank you for that. This is Ed Livingston and I've been speaking with Dr. Nathan Goldstein from the Mt. Sinai School of Medicine. Please listen to the second part of this podcast where Dr. Goldstein and I discuss specific issues related to the palliation of head and neck cancer. Our full set of JAMAevidence podcasts can be found at JAMAevidence.com. Please also listen to the JAMA Clinical Reviews podcast which can be found in the iTunes store and in Stitcher.
Segment:0 .
>> This is Ed Livingston, Deputy Editor for JAMA Clinical Reviews and Education. We have a two-part podcast regarding palliation for head and neck cancer. The discussion is about Chapter 18 of the JAMAevidence text "Care at the Close of Life." I'm speaking with Nathan Goldstein of the Mt. Sinai School of Medicine and the Hertzberg Palliative Care Institute. This is a complex topic and one that many physicians find vexing, so we divided this podcast into two sections. In this, the first podcast, Dr. Goldstein and I discuss how to talk to patients with cancer, who have a limited life expectancy.
In the second part of the podcast we discuss issues specific for palliative care of head and neck cancers. Dr. Goldstein, could you tell us a little bit about yourself and where you work? >> Sure, I am a palliative care physician and a geriatrician, and I work at the Mt. Sinai Health System in New York City, and I'm the chief of the division of palliative care at Mt. Sinai Beth Israel. >> This particular chapter is about head and neck cancer. Can you tell us, from your perspective as a palliative care physician, what's unique about this cancer as compared to some of the others you deal with?
>> Sure. I think when we think about solid tumors you know we think about a group of diseases for which we could offer lots of treatments for, but in general the trajectory is one of sustained function, and then once folks get to a period of time where they have advanced disease they begin to rapidly lose function over time as they are proceeding to end of life. The thing that makes head and neck cancer both different, and in some ways more complicated, is it's actually a relapsing and remitting disease.
So the classic patient with a head and neck cancer is a patient who will have an occurrence of disease and have either local treatment, which could be surgery and/or radiation. And then the disease will either go into remission or be quiescent for a while, and then at some point these diseases often recur. So rather it's months later or in other cases years later. And we see this sort of pattern of the disease relapsing and remitting, relapsing and remitting.
Often with more aggressive advanced local disease until at some point folks end up with metastatic disease. >> So head and neck cancers are somewhat heterogeneous. Could you tell us about the various forms of head and neck cancer and the various ways it presents? >> Yes, so head and neck cancer actually is a series of -- it's a catch-all term for a diverse group of primary malignancies that include malignancies of the oral cavity, the oropharynx, the larynx, the sinuses, and the skull base.
And so when we talk about head and neck cancer, depending on its primary origin, patients can have different symptoms. So sometimes it can be pain in the mouth. It can be a new lesion they notice in the mouth. It can be a new lesion noticed by a physician or a dentist. It can present as pain in the neck, difficulty swallowing, and for folks who have more advanced disease, it can actually present as shortness of breath or airway compression. So depending on exactly where the primary is and at what point it is presenting in their disease, it both has different symptoms and different presentations.
>> So along the way a patient probably has one of the symptoms you just referred to, sees their primary care clinician who probably refers them to an ENT physician who does a biopsy, makes the diagnosis. If it's a really bad tumor they probably go on to oncology and they get treatment. And if it's really, really bad it comes to palliative care. So where along that sequence do you like to have the patients referred to you?
>> Right, so palliative care is specialized medical care for people with serious illnesses, and the goal is to improve the quality of life for both the patient and the family. Palliative care is appropriate at any age and at any stage in a serious illness and can really be provided together with curative and disease-directed treatments. When we think about it in terms of head and neck cancer, in general, we like to meet these patients earlier on in their disease course. Now if folks have a single lesion that will be treated with topical agents, then in general, we may not need to see them.
But as patients have either recurrence or more aggressive disease or progressive disease that will require procedures that will have either morbidity or risk of mortality, that's when we need to see them. So we think of head and neck cancers on a continuum. I'm always happier to see patients earlier so we can form a better relationship with them, but in general, we tend to see patients when they're later in their course not because they're dying, not because of nothing to offer them, but because they're going to have significant symptoms and may need some help making decisions.
That's one of the things that makes head and neck cancer so different. For example, we will see many patients in the hospital with significant symptoms, who are undergoing active treatments and possibly curative treatment but will have either a large surgical procedure or may have significant symptoms from either chemotherapy or local radiation. And we will work with either the primary oncologist or the primary head and neck surgeon or both to provide control of symptoms.
>> So I'm a general surgeon, and I've dealt with this quite a bit -- not head and neck cancer necessarily but other kinds of cancers, and there's a general tendency to call in palliative care towards the bitter end when you're going to hospice and you're looking for kind of the terminal end of life planning. Is that what you tend to run into in your practice? >> Unfortunately, we do tend to see that palliative care is called either late or very late or very, very late. Now palliative care is on a spectrum with hospice.
Hospice is really for patients who are dying. Palliative care is for patients with serious illness at any point in their illness, the goal of which is to improve quality of life and symptom control. I actually think that head and neck cancer is such a great example of how palliative care can partner with a solid tumor oncologist and head and neck surgeon to provide symptom control so patients can do well and get out of the hospital.
The classic patient that I think of is a patient with either local or regional recurrence, who is having significant symptoms, who needs pain control, control of anxiety and depression, clarification of goals of care, but at the same time as the surgeon is planning on taking them to the operating room. So I can think of many cases where we're called not because the patient is dying, not because we can't offer more things for them, but we know it's going to be a long road.
We know that they're going to have significant symptoms, pain pre-op, pain post-op, residual pain, issues around the field of radiation, side effects from chemotherapy. The goal is always the same. The goal is to get them into a lasting remission if not cure, but we're going to partner with the head and neck surgeons and the oncologists to assure that symptoms are controlled so patients can get through their treatments.
>> So I tell you, you have my vote because both my mother and brother died of cancer. And from my own experience from the patient's perspective what I learned was that no matter how well prepared you are things get very hectic and confusing as you approach the end. So I think it's really a great idea -- I think it's really a good idea to get palliative care involved early in the course you can develop a plan, even if you're not executing that plan, because you really need to have a plan in place.
Because no matter how well prepared you are, things do get very, very crazy towards the end. Is that consistent with what you would like for your referrals. >> Absolutely. I mean one of the core tenants that we think about in palliative care is the idea of hope for the best, plan for the worst. So when we talk about communicating with patients and families, you know, the image people have is that palliative care is the grim reaper. We only come in when patients are at the end of life, and that's really not true.
So what we will come in and say, and again, in head and neck cancer it's a great example, we are here to help you. We are here to help your family. We are here to partner with your surgeon and your oncologist to make sure your symptoms are controlled and you have the best quality of life as you're going for either curative or treatment to get your disease in remission. A certain percent of patients won't do well, so we need to have a scary conversation for just a few minutes about what happens if you're one of those patients that don't do well.
So that way if your family has to make difficult decisions, they'll at least know what you want. Because I really hope you're going to get better and we're going to partner with everyone else in your team to make sure you get the best care you can and that we control your symptoms. But sometimes things don't always go well, and it's really helpful for the medical team and your family to know what you want if things don't go well, even though I know that can be a really scary conversation.
>> So that kind of leads into the next thing I really wanted to ask you about because I, in my career, was always admittedly terrible at talking to patients about dying. I always felt very uncomfortable with that conversation. How do you approach your patients in terms of your conversations? What do you tell them when you're discussing end-of-life planning? >> So I'd like to actually start by telling you what we don't do because there is this image that palliative care in the world goes into patients' rooms, walks in, and says, hi, I'm Dr. Goldstein, you're dying of your cancer.
In fact, we never do that. The first thing that we do is we walk in and we ask patients what they know about their illness and what they want to know. And then we can use that information to really titrate the guidance that we give them. So I will ask patients what they understand about their illness, what their hopes are, and how much information that they'd like to know. We also ask who else they want to be involved in the conversations because these can often be scary conversations.
Once we -- and then we ask them questions about where they think their illness is going to go and what the purpose of the treatments are. And then we begin to explain where they have a good understanding and where we might need to clarify some understanding. In terms of telling patients that their disease may not be curable or that they may die of their illness, that's never where we start. But it is certainly a conversation that we have often where we have to explain to patients that their illness is advanced or progressing despite medical treatment.
Whenever I tell patients that, the first thing I do is pause, let that sit for a while, and ask them how they're reacting to it and what their thoughts are. I'll say things like, are you surprised by that? Is it what you thought we were going to say? Is it something that you knew was happening and you just didn't want to talk about? Those kinds of questions. And then we can go on to have a conversation about what that means. And again, we always let the patient guide us. Sometimes I have patients who don't want to hear anything else and sometimes I have patients who will really immediately go on to ask questions about things like life expectancy and where they might want to be for their final weeks or months.
So one of the core elements that we do is in palliative care when we talk about where patients are on this trajectory is really listen. Listen to both what they're saying and what they're asking and more importantly what they're not asking and what they're not asking and what they're not saying to us. >> So one of my experiences is the patient who says nothing and along the way is also really not accepting their diagnosis or their prognosis.
And you get the sense when you're talking to them that they just -- it just is not sinking in that they're going to die of their disease and they don't want to deal with it, they don't want to talk about it. I've had that experience many times in my career with these patients, and it's very much a one-way conversation and you know you're not really getting through to them, and you know they're not really being realistic about the disease. How do you approach that scenario? >> So one of the things that we find in conversations with patients with serious illness is that we're actually having two simultaneous conversations.
We're having a cognitive conversation and an emotional conversation. And physicians in particular, though in general in the world of medicine, we are not good with the emotional conversation. So we will want to have a conversation, you know, the cancer is back, the cancer is progressing, the chemotherapy isn't working. This is what's going to happen. This is what your prognosis is. This is what your life expectancy is. And we continue to give patients cognitive information.
At the same time, there's an emotional element to these conversations that we are not good about checking in with. For example, we rarely say things like I've just given you some news that may be unexpected. What are you feeling about that? We can say things like this must be really difficult to hear. We may ask things like does this match what your understanding is of your illness?
And really responding to their emotions. I will give you a very concrete example. If a patient says to me, "Dr. Goldstein, I'm worried the cancer is back," the answer to that question should never be, well, we'll get a CAT scan to see if it's progressed. The answer to that question should always be "tell me more about what you're worried about." Because until I understand what their concern is, it's very hard to give them the information they're looking for.
And that's where we can see a mismatch. Right? When the patient says to me, "Dr. Goldstein, I'm worried the cancer is back," I don't know if that means I'm worried I'm going to die, I'm worried I'm going to be in pain, I'm worried I'm not going to make it to my son's graduation. Each of those actually requires a different answer, and if I assume they're asking one question when actually they're asking another, no matter what information I give them I'm not going to "move them forward in the conversation" because I haven't quite figured out what it is they're worried about or what they're asking.
Many times what we see, and in palliative care we're called for patients in denial. And as it turns out, many times patients understand what's happening; they either don't want to talk about it or they don't want to talk about it right then. In medicine we assume that in 30 minutes a patient should be able to go from the idea that we're going to cure their cancer to not only can we not cure their cancer and that they're dying but we want them to be thinking about hospice.
And when they can't make that tremendous frameshift in 30 minutes, we assume they're in denial when, in fact, we know it can take many, many conversations before patients actually begin to understand how sick they are and where they are in their point in their illness. >> So that's really very helpful. I was -- you were talking, I was thinking really what a physician should be thinking about is goals, expectations, and fears -- GEF or something like that.
Is that -- does that capture what you're -- >> I think that's right. I mean, you know, what we ask patients is what are you hoping for? What are you afraid of? And sometimes we ask what is the fate worse than death? Because when you ask patients what are your goals for your medical care, the answer is always the same. I want to get better. Right?
>> Right, yeah. >> The question I hear all the time is do you want everything done? And I have never had a patient and family say to me, you know what, Dr. Goldstein, you're really busy today, you don't need to do everything for us. Right? Patients and families always want everything done. And so we have to reframe how we're asking that question. >> That's really important because as a surgeon we're the ones who get called to execute that everything, and sometimes that's what -- you're exactly right.
That's what patients are asked and they say yes. And then when you come and talk to them about surgery and they understand what that's all about, they say no, that's not what I want. >> Right. So let me give you some -- one problem is that question most often gets asked first in the emergency room. Right? And so you have a patient who is in pain or short of breath but regardless is scared. And when you say do you want everything done? What they -- they don't know what that means, but they do know that the state they're in now is not one that's acceptable to them or not tolerable.
I mean that's why they came to the emergency room in the first place because something was wrong. And then we say do you want everything done, and they just want to feel better right. And that's actually a different question. So then they say yes I want everything done and then that becomes perpetuated throughout their entire hospital stay. Right? Because no one sits down and says, well, you know, when they asked you in the ER did you want everything done, what exactly did you mean by that? Another great example is we say, you know, if your heart were to stop do you want us to try and restart it?
You know, most patients are going to say yes to that. They're going to say, yeah, my heart's pretty important. I think you should restart it. However, when we ask the question like this, well, given how advanced your cancer is it's very, very, very unlikely that we can restart your heart if it stops. And if we can restart your heart, it's very, very, very, very unlikely that you'll come back to being the person that you are now that could interact with your family in a meaningful way.
Given that, what are your thoughts about what we should do when your heart stops? Then they'll say, well, if I can't interact with my family in a meaningful way, or if we say it's very, very, very unlikely you'd ever come off a breathing machine and you might end up living in a nursing home attached to a machine unable to interact with your family in a meaningful way, you may get a very different answer than the question of "do you want us to restart your heart if it were to stop." And I think that's a great example of where, instead of focusing on treatments, we focus on outcomes and then we'll get very different answers from what patients and families may want.
>> So essentially you're saying you need a very specific conversation about very specific events, treatments, and outcomes and not sort of a general, as you said, not general "do you want everything" because everybody does. So your advice is to be specific, is that correct? >> Well, I think we need to be specific about what is important to patients. So for example, when a patient says to me "my goal is to be able to interact with my family in a meaningful way," then I could say, well, given how advanced your cancer is if your goal is to be able to interact with your family in a meaningful way, if you get so sick your heart were to stop it's unlikely we can restart it.
It's unlikely that -- and if we can restart it, it's unlikely that you'll end up in a state where you can care for yourself, be independent, and interact with your family in a meaningful way. Then once we know what their hopes are we can tailor treatments to that. I do have patients who say to me all the time, "Dr. Goldstein, it's in God's hands, another day is another day, quality of life for me as -- is another day where my heart is beating." That may not be what I want for me, that may not be what I would want for my family, but it does make medical decision making in that patient much clearer and helps me understand how to approach conversations with that patient about what will or won't get them to their goals.
>> That's really very helpful. Let me switch gears a little bit. So how do you approach a conversation about hospice? And I ask because when my mother was dying of cancer hospice was presented to me as -- in a very, very awkward way and it was -- we were told the insurance company will pay for everything, but you're not allowed to have any testing or any new medications. She could continue getting the treatments if she wanted, but basically we're told they're very few options for dictating any care.
And that was a very unappealing conversation and unappealing choice, and we elected not to do it and this was in her last few weeks. So how do you explain hospice to people? >> When I talk about hospice, it's never where I begin the conversations. I really begin these conversations by figuring out what patients want and where they are in their illness. Now, right, because I think of two different groups of patients. I think about patients for whom we have treatments available that may have some benefits, but patients may elect not to have them.
They may say I've had enough, for whatever reason, I don't want any more treatments, I just want to focus on comfort and quality of life. And then there's another group of patients for whom I may not have options at all and where I will say, you know, unfortunately, given how advanced your disease is, we don't really have any options to cure or treat your disease. That could be for cancer or heart failure or end-stage lung disease, regardless of what the disease is. And then the conversation that we were to have is what's important to you?
And when the importance is quality -- quality of life and comfort and symptom control, that's when we can introduce hospice. And when I introduce hospice, I talk about hospice being both a philosophy and an insurance benefit that essentially provides a package of services for folks who are nearing the end of their lives. I explain that hospice can be delivered in many settings. Hospice can be delivered at home.
Hospice can be delivered in a hospital setting. And hospice can be delivered in a facility or a nursing home. And it gives -- depending on what patients want, how much family support they have, and where they want to spend their final days or weeks of life, hospice will provide a package of services, a safety net, if you will, to keep them in that environment and keep their symptoms controlled. In general, hospice does not have patients come back to the hospital unless it's to focus on intense symptom control.
Patients going on hospice must be willing to forego treatments aimed at curing their disease or at prolonging life and must be willing to focus on comfort. >> Yeah, that's very helpful because I am -- that -- SO I appreciate your indulging me and deviating from head and neck cancer in general because obviously I've struggled with this my whole career. And I think what you just said to us about how to speak to patients is extremely helpful.
So thank you for that. This is Ed Livingston and I've been speaking with Dr. Nathan Goldstein from the Mt. Sinai School of Medicine. Please listen to the second part of this podcast where Dr. Goldstein and I discuss specific issues related to the palliation of head and neck cancer. Our full set of JAMAevidence podcasts can be found at JAMAevidence.com. Please also listen to the JAMA Clinical Reviews podcast which can be found in the iTunes store and in Stitcher.
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