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Sarah E. Harrington, MD, discusses the role of chemotherapy at the end of life.
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Sarah E. Harrington, MD, discusses the role of chemotherapy at the end of life.
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>> This is Christopher Muth, Fishbein fellow in Medical Editing at JAMA. And I'm interviewing Dr. Sarah Harrington, who wrote a chapter entitled The Role of Chemotherapy at the End of Life and JAMA Evidence Care at the Close of Life. She wrote this chapter along with Dr. Thomas Smith. Thank you for joining us today, Dr. Harrington. Can you please tell us about yourself? >> Sure. My name is Dr. Sarah Beth Harrington. And I'm an associate professor of medicine at the University of Arkansas for Medical Sciences. And I'm the division director for the Division of Palliative Medicine here at U of A Mass [phonetic].
>> Okay, great. Thank you. Being diagnosed with cancer and treated with chemotherapy are major life events for patients. The words cancer and chemotherapy are often associated with a host of ideas and emotions, ranging from feelings of hope and a desire to beat the cancer to feelings of shock or perhaps even despair. Because each patient's situation is different, it's important to identify the goals of chemotherapy treatment. And you discuss in your chapter the distinction between palliative chemotherapy and curative chemotherapy.
Can you please explain the difference between palliative chemotherapy and curative chemotherapy for our listeners? >> Curative chemotherapy in the simplest terms is treatment for chemotherapy with the intention to result in the cure of the cancer. And palliative chemotherapy, on the other hand, is chemotherapy given in the non-curative setting to optimize symptom control, to improve quality of life, and sometimes to improve survival. >> Okay, great. And so what makes the role of palliative chemotherapy at the end of life such a complex issue?
>> So it is a complex issue. This is certainly true. The complexity comes in with how to know which patients will best benefit from late palliative chemotherapy. You know, there are many late-stage cancers were patients can very much be benefited from palliative chemo. For example, stage IV non-small cell lung cancer many patients are on what we call biologic. And we have lots of data that shows that some of this palliative chemo can help with shortness of breath, can help with pain associated with the cancer, and can buy as much as a few months of time with very few side effects.
You know, so for those patients that may not to be at the very end of life, you know, the palliative chemotherapy can absolutely help their quality of life and their survival. You know, I think the complexity of the difficulty comes in when we are looking at a very end of life. And I'll use the term end-of-life chemotherapy. So that's chemotherapy given close to death. And we actually know that end-of-life chemotherapy does not improve longevity or symptom control. And so when we're talking about patients that may only have a few weeks or even a few months to live, that's when it becomes a very complex issue with which patients can best benefit from chemotherapy, and which ones will have adverse side effects.
You know, I use, kind of, some of the language of more harm than good chemotherapy at the end of life, can have bad side effects. Patients can have infections, and even life shortening complications. So just differentiating between palliative chemotherapy and end-of-life chemotherapy can be inherently difficult for clinicians. >> Yeah, I would imagine so. And I think the studies that were cited in your chapter suggested that a significant number of patients receiving chemotherapy either don't get clear information about the prognosis, or don't seem to fully understand it.
>> That's exactly right. >> Can you talk about some of the reasons for either miscommunication about the prognosis or the barriers to communication that occur between physicians and patients in these types of discussions? >> Sure. I think there are two parts to this. One is prognostication in cancer. And really prognostication in a lot of diseases is just inherently difficult. It's difficult to know which patients may only have a few months versus six- or seven-months, and that can be a very different recommendation for those patients depending on prognosis.
So prognostication is hard. The second thing is, you know, when you're a patient or family member of a patient who's just been diagnosed with advanced cancer, the emotional distress level goes way up. You know, I work with some excellent oncologists who are fantastic communicators. And I know that patients and families in their distress can sometimes walk away from a conversation understanding and remembering only pieces of that conversation. You know, I've had patients that may be only take away ten percent of what I just said.
So it's not that the information wasn't shared, it's just the patient didn't either hear it or understand it. So, you know, I tell my trainees when we are talking about communication is it often takes multiple conversations to break through some of those barriers with patients and families. You know, sometimes it's hard for patients to hear bad news, you know, and sometimes it's difficult for physicians to give bad news. And we're not trained to navigate those conversations very well. You know, I've also found that patients prefer to receive news and information in a number of ways.
You know, I've got some patients that want every detail that I can give them. They're the patients that say, you know, give it to me straight, doc. And, um, they want every detail that I have. I have other patients that they don't want to know anything. But they give me permission to talk to their families. And then I have patients that are somewhere in the middle, they just want to know big picture but not really details and not a lot of details regarding prognostication. So, you know, I find that it takes some skill and practice to navigate how to do those conversations with those different types of patients.
It was a really interesting study by Jane Weeks in the New England Journal of Medicine in 2012, and they surveyed over 1,000 patients with incurable stage IV lung or colon cancer receiving palliative chemo. And then they interviewed the patients after the visit, and ask them did they think the chemo might cure them. And 69 percent of the lung cancer patients and 81 percent of the colorectal patients thought that the chemo was curable, despite being told that it was not. So I think there's just lots of levels here about why the information doesn't translate well sometimes.
But I think a lot of it is difficulty with communication. And then patients may be needing a few conversations to really understand what's going on. >> Okay, thank you. When making decisions about palliative chemotherapy, it seems that patient values and preferences are also certainly important to consider. What can clinicians do to help elicit these preferences and values and help patients decide whether or not to choose palliative chemotherapy? >> I think first a foundation of trust is really essential.
And spending time developing a relationship with patients and their family is really invaluable. You know, the best way for me to figure out a patient's goals or hopes is just to ask. And so asking questions about what is the patient's hope for, you know, what concerns them the most, what are their biggest fears, what are their goals, you know, how do they, how do you want to spend your time, and how do they define quality of life. All of those are really important questions and are integral parts of having that relationship and getting to know your patient's values.
And then once I know my patient's values, you can frame any intervention or treatment -- And this is true for things, you know, outside of chemo. Around those goals, and discuss the benefits and burdens of treatment options. And then that's how you really exercise a truly shared decision-making with patients and families. I also think it's important for clinicians to be aware that the patients have very different values. You know, I have some patients that would be okay suffering a great deal with toxic treatments if it meant an extra two weeks of life.
You know, I have other patients that say, no thanks, I'd rather not be sick, spend time in the clinic or hospital, and I'd rather spend some time at home, even if that meant I had two weeks left. I mean, these are very, kind of, individual values. And I think you have to be able to recognize and respect those. The other thing to think about, I was looking at a couple of more recent studies since the paper came out, and Alexi Wright and their group and the Coping with Cancer study came out with a paper in the British Medical Journal in 2014.
And they investigated the association with receipt of palliative chemo and the place of death for adults with advanced cancer. And they found that those receiving chemo in the last month or two of life majority in the last two months before they died they had a much higher rate of dying in the hospital, receiving CPR or mechanical ventilation or both at the very end of life. And those patients were less likely to die at home or in their preferred location of death. If they were referred to hospice it was very, very late, you know, in the last week of life.
And even with the small group there were no different in survival rate. So I think part of the broader conversation between clinicians and patients has to do with if you had a choice where would you want to be, you know, at the end of life. Would you rather be home? What would be your preferred location? If you had a choice. And sometimes starting there and talking about values and framing some of the conversation around that can be helpful. But I think, thinking about the broader implications of palliative chemo when making these decisions about treatment has to include things like end-of-life care and potential harm.
>> I think those are very good points. I think admittedly it's going to be an individualized choice for each patient. But are there certain indicators that might say when a patient or their family should begin to consider stopping chemotherapy and transitioning to hospice care? >> Absolutely. I'll first say that there's not a lot of evidence right now when you look at the literature and studies with, you know, are there some very object of things to look for. But I can tell you that it starts with a very honest conversation between patients and their clinicians, and what expectations we can have with the chemotherapy.
So what are the expectations? Is it that the tumors will shrink? Is it that the tumors will be stable? Is it that the chemo will help you with better symptoms? And, you know, what are some objective things to look for? Will a patient feel better? How will it affect my quality of life? So, you know, when we meet with patients if the chemo is no longer achieving for them those goals then it's time to reevaluate the treatment.
But that conversation about, kind of, starting and stopping always starts with what are the expectations, and let's continue to reevaluate those. So in a practical sense, you know, what I do in my palliative care clinic we talk a lot about functional status. And sometimes that's a very good marker for some patients and families. I usually start having the hospice conversation much, much earlier than when we actually need it. So when we start talking about hospice care in our clinic it's very much an upstream conversation.
So I usually approach it as a down the road option. So at some point down the road you may not tolerate your chemo, or it may not be achieving for you a better quality or a longer life. And at that point we need to, kind of, get our heads together and talk about hospice care, and making our focus about quality of life and symptom management. And, you know, at some point down the road you may be too weak or tired to come to clinic. And at that point that might be our cue for me to bring folks to you, you know, with hospice care instead of you coming to us.
So sometimes what I can do is start the down the road conversation. As of yet no one has gotten mad at me for a down the road conversation. And so having those conversations upstream then when it gets to the point of the patient can't come to clinic, they are too weak, or the chemo is not achieving what we hoped it would, then we've already started that conversation. And making that switch to focus more on comfort is not such a dichotomous, abrupt thing for patients and families. >> Yes, it seemed like thinking of hospice as an option, sort of, throughout the course of care was one of the points of emphasis in the chapter.
>> Absolutely. >> Can you talk about some of the misconceptions about palliative care? I think it sounds like you explained it quite nicely to your patients. But it seems that both clinicians and patients may have misconceptions. And how does that impact of these conversations in general? >> Sure. So misconceptions still persist, unfortunately. But I think we're making some progress over the last few years. The biggest misconception is that palliative care is the same thing as hospice, or that palliative care is end-of-life care and it doesn't have a place prior to end-of-life.
What we do know is that palliative care works best when it is upstream. And it's not an either/or phenomenon. So patients can receive relative chemo and radiation and have concurrent care with their oncologist and see a palliative care clinician for symptom management, taking care of the whole patient, having these difficult conversations. And by aggressively managing symptoms and taking care of the whole patient, we know that when it's done early and it's done well it can lead to improved outcomes. So depression scores can go down, quality of life scores can go up, pain and symptoms are better managed.
And, you know, after the Temel study we've thought a lot about how early palliative care can even improve length of life and improve survival. So, you know, I think the goal to have upstream palliative care is standard of care for patients with a serious illness like cancer really should be our goal. And that's what we are continuing to work towards. >> Great. You mentioned the Temel study? Is that, was that one of the studies in the article? >> I believe that came out after the article. So this was a study by Jennifer Temel and her group at Harvard at Mass General looking at concurrent palliative care.
And they took a group of stage IV non-small cell lung cancer patients. And half of the group received usual oncology care. The other half received the usual oncology care plus a visit with a palliative care team at least once a month. And they looked at things come outcomes such as depression scores, quality of life scores, aggressiveness of care at the end of life, and found that the palliative care group did better symptom management-wise, had less aggressive care at the end-of-life, or less likely to die in an ICU.
And, oh, by the way, they lived almost three months longer than the group that had the usual oncology care without concurrent palliative care. So I think we're starting to see palliative care is having some really significant benefit to patients with a serious illness. I think some of that could be that patients, if they feel better they're better functioning. If they are not spending their last two weeks in the hospital getting chemo then they may actually live longer. So I think that the idea that palliative care is somehow associated with a shorter survival, I think that study and other studies that are coming will disprove that.
>> Is there anything else you'd like to tell our listeners about the role of chemotherapy at the end-of-life? >> You know, I think, I don't want to go away from this podcast saying that all palliative chemo is bad and inappropriate, because I don't think that that's true at all. I think for a lot of patients they can benefit from palliative chemotherapy. What I'd like to really emphasizes that the idea that the choice to start chemotherapy should not be the end of decision-making and should not be the end of discussion.
And, you know, I would recommend that patients and their oncologists have regular discussions of the efficacy of chemotherapy, advance care planning, and exploration of the benefits and timing of hospice care. This should be a longitudinal conversation over time. >> Thank you, Dr. Harrington, for taking the time to speak with us. >> Thank you very much. >> You've been listening to Chapter 22, The Role of Chemotherapy at the End of Life from JAMA Evidence, Care at the Close of Life. This is Christopher Muth, Fishbein fellow in Medical Editing at JAMA with this JAMA Evidence podcast.
Segment:0 .
>> This is Christopher Muth, Fishbein fellow in Medical Editing at JAMA. And I'm interviewing Dr. Sarah Harrington, who wrote a chapter entitled The Role of Chemotherapy at the End of Life and JAMA Evidence Care at the Close of Life. She wrote this chapter along with Dr. Thomas Smith. Thank you for joining us today, Dr. Harrington. Can you please tell us about yourself? >> Sure. My name is Dr. Sarah Beth Harrington. And I'm an associate professor of medicine at the University of Arkansas for Medical Sciences. And I'm the division director for the Division of Palliative Medicine here at U of A Mass [phonetic].
>> Okay, great. Thank you. Being diagnosed with cancer and treated with chemotherapy are major life events for patients. The words cancer and chemotherapy are often associated with a host of ideas and emotions, ranging from feelings of hope and a desire to beat the cancer to feelings of shock or perhaps even despair. Because each patient's situation is different, it's important to identify the goals of chemotherapy treatment. And you discuss in your chapter the distinction between palliative chemotherapy and curative chemotherapy.
Can you please explain the difference between palliative chemotherapy and curative chemotherapy for our listeners? >> Curative chemotherapy in the simplest terms is treatment for chemotherapy with the intention to result in the cure of the cancer. And palliative chemotherapy, on the other hand, is chemotherapy given in the non-curative setting to optimize symptom control, to improve quality of life, and sometimes to improve survival. >> Okay, great. And so what makes the role of palliative chemotherapy at the end of life such a complex issue?
>> So it is a complex issue. This is certainly true. The complexity comes in with how to know which patients will best benefit from late palliative chemotherapy. You know, there are many late-stage cancers were patients can very much be benefited from palliative chemo. For example, stage IV non-small cell lung cancer many patients are on what we call biologic. And we have lots of data that shows that some of this palliative chemo can help with shortness of breath, can help with pain associated with the cancer, and can buy as much as a few months of time with very few side effects.
You know, so for those patients that may not to be at the very end of life, you know, the palliative chemotherapy can absolutely help their quality of life and their survival. You know, I think the complexity of the difficulty comes in when we are looking at a very end of life. And I'll use the term end-of-life chemotherapy. So that's chemotherapy given close to death. And we actually know that end-of-life chemotherapy does not improve longevity or symptom control. And so when we're talking about patients that may only have a few weeks or even a few months to live, that's when it becomes a very complex issue with which patients can best benefit from chemotherapy, and which ones will have adverse side effects.
You know, I use, kind of, some of the language of more harm than good chemotherapy at the end of life, can have bad side effects. Patients can have infections, and even life shortening complications. So just differentiating between palliative chemotherapy and end-of-life chemotherapy can be inherently difficult for clinicians. >> Yeah, I would imagine so. And I think the studies that were cited in your chapter suggested that a significant number of patients receiving chemotherapy either don't get clear information about the prognosis, or don't seem to fully understand it.
>> That's exactly right. >> Can you talk about some of the reasons for either miscommunication about the prognosis or the barriers to communication that occur between physicians and patients in these types of discussions? >> Sure. I think there are two parts to this. One is prognostication in cancer. And really prognostication in a lot of diseases is just inherently difficult. It's difficult to know which patients may only have a few months versus six- or seven-months, and that can be a very different recommendation for those patients depending on prognosis.
So prognostication is hard. The second thing is, you know, when you're a patient or family member of a patient who's just been diagnosed with advanced cancer, the emotional distress level goes way up. You know, I work with some excellent oncologists who are fantastic communicators. And I know that patients and families in their distress can sometimes walk away from a conversation understanding and remembering only pieces of that conversation. You know, I've had patients that may be only take away ten percent of what I just said.
So it's not that the information wasn't shared, it's just the patient didn't either hear it or understand it. So, you know, I tell my trainees when we are talking about communication is it often takes multiple conversations to break through some of those barriers with patients and families. You know, sometimes it's hard for patients to hear bad news, you know, and sometimes it's difficult for physicians to give bad news. And we're not trained to navigate those conversations very well. You know, I've also found that patients prefer to receive news and information in a number of ways.
You know, I've got some patients that want every detail that I can give them. They're the patients that say, you know, give it to me straight, doc. And, um, they want every detail that I have. I have other patients that they don't want to know anything. But they give me permission to talk to their families. And then I have patients that are somewhere in the middle, they just want to know big picture but not really details and not a lot of details regarding prognostication. So, you know, I find that it takes some skill and practice to navigate how to do those conversations with those different types of patients.
It was a really interesting study by Jane Weeks in the New England Journal of Medicine in 2012, and they surveyed over 1,000 patients with incurable stage IV lung or colon cancer receiving palliative chemo. And then they interviewed the patients after the visit, and ask them did they think the chemo might cure them. And 69 percent of the lung cancer patients and 81 percent of the colorectal patients thought that the chemo was curable, despite being told that it was not. So I think there's just lots of levels here about why the information doesn't translate well sometimes.
But I think a lot of it is difficulty with communication. And then patients may be needing a few conversations to really understand what's going on. >> Okay, thank you. When making decisions about palliative chemotherapy, it seems that patient values and preferences are also certainly important to consider. What can clinicians do to help elicit these preferences and values and help patients decide whether or not to choose palliative chemotherapy? >> I think first a foundation of trust is really essential.
And spending time developing a relationship with patients and their family is really invaluable. You know, the best way for me to figure out a patient's goals or hopes is just to ask. And so asking questions about what is the patient's hope for, you know, what concerns them the most, what are their biggest fears, what are their goals, you know, how do they, how do you want to spend your time, and how do they define quality of life. All of those are really important questions and are integral parts of having that relationship and getting to know your patient's values.
And then once I know my patient's values, you can frame any intervention or treatment -- And this is true for things, you know, outside of chemo. Around those goals, and discuss the benefits and burdens of treatment options. And then that's how you really exercise a truly shared decision-making with patients and families. I also think it's important for clinicians to be aware that the patients have very different values. You know, I have some patients that would be okay suffering a great deal with toxic treatments if it meant an extra two weeks of life.
You know, I have other patients that say, no thanks, I'd rather not be sick, spend time in the clinic or hospital, and I'd rather spend some time at home, even if that meant I had two weeks left. I mean, these are very, kind of, individual values. And I think you have to be able to recognize and respect those. The other thing to think about, I was looking at a couple of more recent studies since the paper came out, and Alexi Wright and their group and the Coping with Cancer study came out with a paper in the British Medical Journal in 2014.
And they investigated the association with receipt of palliative chemo and the place of death for adults with advanced cancer. And they found that those receiving chemo in the last month or two of life majority in the last two months before they died they had a much higher rate of dying in the hospital, receiving CPR or mechanical ventilation or both at the very end of life. And those patients were less likely to die at home or in their preferred location of death. If they were referred to hospice it was very, very late, you know, in the last week of life.
And even with the small group there were no different in survival rate. So I think part of the broader conversation between clinicians and patients has to do with if you had a choice where would you want to be, you know, at the end of life. Would you rather be home? What would be your preferred location? If you had a choice. And sometimes starting there and talking about values and framing some of the conversation around that can be helpful. But I think, thinking about the broader implications of palliative chemo when making these decisions about treatment has to include things like end-of-life care and potential harm.
>> I think those are very good points. I think admittedly it's going to be an individualized choice for each patient. But are there certain indicators that might say when a patient or their family should begin to consider stopping chemotherapy and transitioning to hospice care? >> Absolutely. I'll first say that there's not a lot of evidence right now when you look at the literature and studies with, you know, are there some very object of things to look for. But I can tell you that it starts with a very honest conversation between patients and their clinicians, and what expectations we can have with the chemotherapy.
So what are the expectations? Is it that the tumors will shrink? Is it that the tumors will be stable? Is it that the chemo will help you with better symptoms? And, you know, what are some objective things to look for? Will a patient feel better? How will it affect my quality of life? So, you know, when we meet with patients if the chemo is no longer achieving for them those goals then it's time to reevaluate the treatment.
But that conversation about, kind of, starting and stopping always starts with what are the expectations, and let's continue to reevaluate those. So in a practical sense, you know, what I do in my palliative care clinic we talk a lot about functional status. And sometimes that's a very good marker for some patients and families. I usually start having the hospice conversation much, much earlier than when we actually need it. So when we start talking about hospice care in our clinic it's very much an upstream conversation.
So I usually approach it as a down the road option. So at some point down the road you may not tolerate your chemo, or it may not be achieving for you a better quality or a longer life. And at that point we need to, kind of, get our heads together and talk about hospice care, and making our focus about quality of life and symptom management. And, you know, at some point down the road you may be too weak or tired to come to clinic. And at that point that might be our cue for me to bring folks to you, you know, with hospice care instead of you coming to us.
So sometimes what I can do is start the down the road conversation. As of yet no one has gotten mad at me for a down the road conversation. And so having those conversations upstream then when it gets to the point of the patient can't come to clinic, they are too weak, or the chemo is not achieving what we hoped it would, then we've already started that conversation. And making that switch to focus more on comfort is not such a dichotomous, abrupt thing for patients and families. >> Yes, it seemed like thinking of hospice as an option, sort of, throughout the course of care was one of the points of emphasis in the chapter.
>> Absolutely. >> Can you talk about some of the misconceptions about palliative care? I think it sounds like you explained it quite nicely to your patients. But it seems that both clinicians and patients may have misconceptions. And how does that impact of these conversations in general? >> Sure. So misconceptions still persist, unfortunately. But I think we're making some progress over the last few years. The biggest misconception is that palliative care is the same thing as hospice, or that palliative care is end-of-life care and it doesn't have a place prior to end-of-life.
What we do know is that palliative care works best when it is upstream. And it's not an either/or phenomenon. So patients can receive relative chemo and radiation and have concurrent care with their oncologist and see a palliative care clinician for symptom management, taking care of the whole patient, having these difficult conversations. And by aggressively managing symptoms and taking care of the whole patient, we know that when it's done early and it's done well it can lead to improved outcomes. So depression scores can go down, quality of life scores can go up, pain and symptoms are better managed.
And, you know, after the Temel study we've thought a lot about how early palliative care can even improve length of life and improve survival. So, you know, I think the goal to have upstream palliative care is standard of care for patients with a serious illness like cancer really should be our goal. And that's what we are continuing to work towards. >> Great. You mentioned the Temel study? Is that, was that one of the studies in the article? >> I believe that came out after the article. So this was a study by Jennifer Temel and her group at Harvard at Mass General looking at concurrent palliative care.
And they took a group of stage IV non-small cell lung cancer patients. And half of the group received usual oncology care. The other half received the usual oncology care plus a visit with a palliative care team at least once a month. And they looked at things come outcomes such as depression scores, quality of life scores, aggressiveness of care at the end of life, and found that the palliative care group did better symptom management-wise, had less aggressive care at the end-of-life, or less likely to die in an ICU.
And, oh, by the way, they lived almost three months longer than the group that had the usual oncology care without concurrent palliative care. So I think we're starting to see palliative care is having some really significant benefit to patients with a serious illness. I think some of that could be that patients, if they feel better they're better functioning. If they are not spending their last two weeks in the hospital getting chemo then they may actually live longer. So I think that the idea that palliative care is somehow associated with a shorter survival, I think that study and other studies that are coming will disprove that.
>> Is there anything else you'd like to tell our listeners about the role of chemotherapy at the end-of-life? >> You know, I think, I don't want to go away from this podcast saying that all palliative chemo is bad and inappropriate, because I don't think that that's true at all. I think for a lot of patients they can benefit from palliative chemotherapy. What I'd like to really emphasizes that the idea that the choice to start chemotherapy should not be the end of decision-making and should not be the end of discussion.
And, you know, I would recommend that patients and their oncologists have regular discussions of the efficacy of chemotherapy, advance care planning, and exploration of the benefits and timing of hospice care. This should be a longitudinal conversation over time. >> Thank you, Dr. Harrington, for taking the time to speak with us. >> Thank you very much. >> You've been listening to Chapter 22, The Role of Chemotherapy at the End of Life from JAMA Evidence, Care at the Close of Life. This is Christopher Muth, Fishbein fellow in Medical Editing at JAMA with this JAMA Evidence podcast.
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Accessibility
Using forms mode, you can utilize keyboard shortcuts to make usability more efficient.
Space bar will play and pause the media.
You can press A to open the Accessibility Dialog.
This describes many other keyboard shortcuts for media controls.
Exit Clip Mode
The video is currently set-up to show just a clip from 0:00 to video end. You have requested to see a portion of the media outside of the clip.
Click OK to switch to the full media or click if you would like to stay inside the clip. You can always go back to the clip with Tools and Clip Mode