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Overcoming the False Dichotomy of Curative vs. Palliative Care for Late-Stage HIV/AIDS: Peter A. Selwyn, MD, MPH, discusses the false dichotomy of curative vs palliative care for late-stage HIV/AIDS.
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Overcoming the False Dichotomy of Curative vs. Palliative Care for Late-Stage HIV/AIDS: Peter A. Selwyn, MD, MPH, discusses the false dichotomy of curative vs palliative care for late-stage HIV/AIDS.
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Segment:0 .
>> I'm Joan Stephenson, editor of JAMA's Medical News and Perspective section. Today I have the pleasure of talking with Dr. Peter Selwyn about overcoming the false dichotomy of curative versus Palliative Care for late stage HIV AIDS. This is a topic covered in Care at the Close of Life in a chapter coauthored by today's guest. Welcome to the podcast, Dr. Selwyn, and please introduce yourself to our listeners. >> My name is Peter Selwyn and I'm a professor and chairman of Family and Social Medicine at Albert Einstein College of Medicine and Montefiore Medical Center in the Bronx New York, and Director of the Palliative Care Program at Montefiore Medical Center.
>> Dr. Selwyn, what are some other challenges specific to HIV AIDS as a chronic disease? >> I think there have been remarkable changes, as everyone is aware, in the last couple of decades with the treatment and clinical course of HIV disease. And now, even though people are still dying from AIDS in many parts of the world, and even here, there are new issues in Palliative Care and end of life care that really relate to the new manifestations of HIV as a chronic disease. In which, people are living longer, they're more vulnerable in fact, to certain co-morbidities than other kinds of chronic disease, problems that, in fact people use to never live long enough to experience.
And so, in some ways, the clinical landscape and the kinds of decisions about treatment interventions, or if anything more complex that they were in the earlier days when things were much more desperate, yet also in some ways more straight forward perhaps. >> What is the false dichotomy in caring for patients with HIV AIDS? And what makes caring for patients with AIDS different from caring for patients with other incurable diseases, such as some cancers? >> I think the false dichotomy, which is probably true for many conditions but particularly for AIDS, is that there's no logical distinction between treatments that may be directed at relieving symptoms or improving quality of life, and those that may be aimed at reversing the underlying disease course for HIV.
In fact, the most dramatic intervention that you can have that approves quality of life and relieves symptom burden, is to have people on effective antiretroviral therapy, and that's been shown very clearly, both here and in many parts of the developing world. And even here, when people do have access to anti-retrovirals there may be times, even at the end of life, when the patients are dying being their HIV is so advanced, or the virus is so resistant that it can't be effectively treated with anti-retrovirals, and yet at the same time, there might be an intervention that can be focused on a disease specific issue, such as oral candidiasis, or the bacterial pneumonia, or something where treating the infection may actually improve people's symptoms and quality of life, and ability to live or die with the disease.
So, it doesn't really make sense to parse it out into some sort of binary approach where you treat the disease until you have no other treatment options, and then you just focus on palliative or end of life care. There's really, you have to play between both palliative and curative interventions all the way through the disease course. >> How has determining prognosis for patients with late stage HIV AIDS changed since the beginning of the AIDS epidemic? >> Well, it's more difficult now, and in fact the kinds of prognostic schemes and frameworks really have not been developed or standardized in any way to catch up with how the epidemic has changed.
It used to be that simply with some basic information, like the person's CD4 count, their viral load, or not even the viral load, but their CD4 count, their level of the immune suppression, how many and what types of opportunistic infections they had had in the past. You could predict fairly readily, at least the general prognosis, you know, within, you know, weeks or months, or longer. And now, all of it really hinges on whether people have had or can have, or in some ways are still potentially able to benefit from a trial of adequate anti-retroviral therapy.
And there are many things they could impact on that, in terms of whether the person is able to adhere because of other reasons, like psychosocial issues, or other underlying social determinants, or whether they're a drug infectious disease, or drug interactions. So, there's lots of things that play into that, and sometimes, unless you really are able to get whether the person still is potentially able to benefit from therapy, any discussions about prognosis are really premature or even can be misleading. I've had a number of patients referred for essentially hospice care for end stage AIDS so called, and in fact they've never really had an adequately managed and supervised trial of anti-retroviral therapy, and have, you know, miraculously returned to a much higher level of functioning.
So, I think there are some schemes and some approaches now that have been looking at other things in addition to, or even instead of some of those standard markers, like functional status and other potential surrogates. But, in some ways, they're some more complex calculation or estimation than it used to be. >> Can you please explain the potential benefits and risks of continuing with highly active anti-retroviral treatment in late stage HIV? >> Well, the benefits may be, and this has not been definitively proven but it's certainly consistent with evidence as it exists and clinical practice, that anti-retrovirals may have a beneficial effect on things like HIV and telepathy, or dementia, some of the cognitive changes, perhaps some of the constitutional symptoms, the fatigue, weight loss, perhaps renal function and some other things.
So, even for some people who may be, you know, very late stage who may not be at the point where their prognosis is affected, something like for example the brain disease, it's been suggested it may still continue to benefit, and there are different factors that may impact on that. So, there's some ways in which, even though anti-retrovirals is a very future-directed therapy, more in month to years, than weeks to months, where it may have some benefit. At the same time, you know, the risks may be ongoing drug toxicity for some people, where it may be difficult for them to tolerate medications in the last days and weeks of life, it may not be that relevant, it may just be noxious without adding to quality of life or survival.
And also, for some people it can create a kind of confusion in terms of what the real underlying approach and goals of care may be, where it may seem as if things are, so going along as usual and the patients taking their anti-retroviral, then everything is fine, and meanwhile, they're dying. So, it can have symbolically, meaning that if people are dying, for some it's very important, they want to continue no matter what, for others it may make things sort of confusing or ambiguous. It's worth at least, considering there tends to be a default in AIDS care, which is, once you start the treatment you just continue it, but I think just in the same way that people shouldn't have that approach to cancer chemotherapy, I think it's reasonable to have a similar, at least thoughtful approach, weighing the potential risks and benefits for anti-retrovirals.
>> How can clinicians assist the caregivers of patients with AIDS? >> Well, something that's very unique, or at least unusual about HIV AIDS compared to other life threatening illnesses is that, even though it's not always the case, it is often the case that family members and other caregivers, particularly spouses or partners, may themselves be affected by HIV AIDS, in terms of having the infection themselves, potentially even the one who's the caregiver having been the person who transmitted it to the one who's more sick and dying.
So, there are lots of very complicated dynamics that can impact on what happens when this is literally a disease that affects families, not only by the burden of disease, but by people having, in fact, the same condition, which can spread through, obviously intimate contact. So, I think that's something to always keep in mind, even though it's not always the case, but certainly that's in the background in everything that that implies. In addition, because of this new phase of prolong survival, many people have been caregivers for many, many years, even decades, and so when someone is coming to the end of life or is having a very complicated course with all these other co-morbidities over a period of years, if not more, the cumulative burden to caregivers can just grow and their own stresses, their own physical and emotional health can really come into play, whether or not, you know, they themselves may be HIV infected.
So, I think having support available and ongoing connection, and really sort of helping to encourage caregivers to take care of themselves and to deal with their own unfinished business in a sense, or their own health and well being, is really critical, because otherwise people may end up, you know, for what might seem like good reasons, or just because it's sort of the-- you know, the norm, focusing all their attention on the person who's sick over such a long period of time, and then they just end up being completely depleted or not cared for, and that can really be, you know, very depleting over time.
>> Is there anything else you would like to tell our listeners about caring for patients with late stage HIV AIDS? >> Yeah. I think it's important to restate that this is still a very stigmatized illness, and you know, we're not at the point yet in the sort of history of this where people feel comfortable talking to other people often about the fact that this is their diagnosis. I've had patients with AIDS who ironically and almost tragically seem to be relieved when they get a secondary diagnosis of cancer, because that means that they now have something that they can die from that's more sort of socially acceptable in a way, which is really very striking when you think about it, but that's, I think, still the context in which some people are living.
And so, issues that involved families and stigma, and vulnerability, and people being disenfranchised, I think those are all very much in the four when working with patients with AIDS. Likewise, it's just having to do with substance use, and sexual orientation as it may affect family dynamics, or family of origin versus current family, I mean those are all important and frequent. And the fact that the people, again, are living in this much more in a way, complex kind of trajectory now, where they may be dying of AIDS, they may be dying of something completely different, they may be dying of something that is developing in parallel to AIDs but not really AIDS itself.
So, it's very common now that people are fully controlled with the anti-retrovirals, their CD4 count is normal, their immune function is normal, their viral load is suppressed, and yet they're dying of liver failure from hepatitis C. Which years ago, no one lived long enough to get sick from, to die from. So, that kind of irony of having to navigate the late stages of this new kind of complex co-morbid frailty over many years is an important kind of construct that people may not be as familiar with or may not be as sensitive to. >> Thank you, Dr. Selwyn, for this discussion of overcoming the false dichotomy of curative versus palliative care for late stage HIV AIDS.
Additional information about this topic is available in Care at the Close of Life. This has been Joan Stephenson of JAMA, talking with Dr. Peter Selwyn about curative and palliative care for people with late stage HIV AIDS for JAMA evidence.
Segment:0 .
>> I'm Joan Stephenson, editor of JAMA's Medical News and Perspective section. Today I have the pleasure of talking with Dr. Peter Selwyn about overcoming the false dichotomy of curative versus Palliative Care for late stage HIV AIDS. This is a topic covered in Care at the Close of Life in a chapter coauthored by today's guest. Welcome to the podcast, Dr. Selwyn, and please introduce yourself to our listeners. >> My name is Peter Selwyn and I'm a professor and chairman of Family and Social Medicine at Albert Einstein College of Medicine and Montefiore Medical Center in the Bronx New York, and Director of the Palliative Care Program at Montefiore Medical Center.
>> Dr. Selwyn, what are some other challenges specific to HIV AIDS as a chronic disease? >> I think there have been remarkable changes, as everyone is aware, in the last couple of decades with the treatment and clinical course of HIV disease. And now, even though people are still dying from AIDS in many parts of the world, and even here, there are new issues in Palliative Care and end of life care that really relate to the new manifestations of HIV as a chronic disease. In which, people are living longer, they're more vulnerable in fact, to certain co-morbidities than other kinds of chronic disease, problems that, in fact people use to never live long enough to experience.
And so, in some ways, the clinical landscape and the kinds of decisions about treatment interventions, or if anything more complex that they were in the earlier days when things were much more desperate, yet also in some ways more straight forward perhaps. >> What is the false dichotomy in caring for patients with HIV AIDS? And what makes caring for patients with AIDS different from caring for patients with other incurable diseases, such as some cancers? >> I think the false dichotomy, which is probably true for many conditions but particularly for AIDS, is that there's no logical distinction between treatments that may be directed at relieving symptoms or improving quality of life, and those that may be aimed at reversing the underlying disease course for HIV.
In fact, the most dramatic intervention that you can have that approves quality of life and relieves symptom burden, is to have people on effective antiretroviral therapy, and that's been shown very clearly, both here and in many parts of the developing world. And even here, when people do have access to anti-retrovirals there may be times, even at the end of life, when the patients are dying being their HIV is so advanced, or the virus is so resistant that it can't be effectively treated with anti-retrovirals, and yet at the same time, there might be an intervention that can be focused on a disease specific issue, such as oral candidiasis, or the bacterial pneumonia, or something where treating the infection may actually improve people's symptoms and quality of life, and ability to live or die with the disease.
So, it doesn't really make sense to parse it out into some sort of binary approach where you treat the disease until you have no other treatment options, and then you just focus on palliative or end of life care. There's really, you have to play between both palliative and curative interventions all the way through the disease course. >> How has determining prognosis for patients with late stage HIV AIDS changed since the beginning of the AIDS epidemic? >> Well, it's more difficult now, and in fact the kinds of prognostic schemes and frameworks really have not been developed or standardized in any way to catch up with how the epidemic has changed.
It used to be that simply with some basic information, like the person's CD4 count, their viral load, or not even the viral load, but their CD4 count, their level of the immune suppression, how many and what types of opportunistic infections they had had in the past. You could predict fairly readily, at least the general prognosis, you know, within, you know, weeks or months, or longer. And now, all of it really hinges on whether people have had or can have, or in some ways are still potentially able to benefit from a trial of adequate anti-retroviral therapy.
And there are many things they could impact on that, in terms of whether the person is able to adhere because of other reasons, like psychosocial issues, or other underlying social determinants, or whether they're a drug infectious disease, or drug interactions. So, there's lots of things that play into that, and sometimes, unless you really are able to get whether the person still is potentially able to benefit from therapy, any discussions about prognosis are really premature or even can be misleading. I've had a number of patients referred for essentially hospice care for end stage AIDS so called, and in fact they've never really had an adequately managed and supervised trial of anti-retroviral therapy, and have, you know, miraculously returned to a much higher level of functioning.
So, I think there are some schemes and some approaches now that have been looking at other things in addition to, or even instead of some of those standard markers, like functional status and other potential surrogates. But, in some ways, they're some more complex calculation or estimation than it used to be. >> Can you please explain the potential benefits and risks of continuing with highly active anti-retroviral treatment in late stage HIV? >> Well, the benefits may be, and this has not been definitively proven but it's certainly consistent with evidence as it exists and clinical practice, that anti-retrovirals may have a beneficial effect on things like HIV and telepathy, or dementia, some of the cognitive changes, perhaps some of the constitutional symptoms, the fatigue, weight loss, perhaps renal function and some other things.
So, even for some people who may be, you know, very late stage who may not be at the point where their prognosis is affected, something like for example the brain disease, it's been suggested it may still continue to benefit, and there are different factors that may impact on that. So, there's some ways in which, even though anti-retrovirals is a very future-directed therapy, more in month to years, than weeks to months, where it may have some benefit. At the same time, you know, the risks may be ongoing drug toxicity for some people, where it may be difficult for them to tolerate medications in the last days and weeks of life, it may not be that relevant, it may just be noxious without adding to quality of life or survival.
And also, for some people it can create a kind of confusion in terms of what the real underlying approach and goals of care may be, where it may seem as if things are, so going along as usual and the patients taking their anti-retroviral, then everything is fine, and meanwhile, they're dying. So, it can have symbolically, meaning that if people are dying, for some it's very important, they want to continue no matter what, for others it may make things sort of confusing or ambiguous. It's worth at least, considering there tends to be a default in AIDS care, which is, once you start the treatment you just continue it, but I think just in the same way that people shouldn't have that approach to cancer chemotherapy, I think it's reasonable to have a similar, at least thoughtful approach, weighing the potential risks and benefits for anti-retrovirals.
>> How can clinicians assist the caregivers of patients with AIDS? >> Well, something that's very unique, or at least unusual about HIV AIDS compared to other life threatening illnesses is that, even though it's not always the case, it is often the case that family members and other caregivers, particularly spouses or partners, may themselves be affected by HIV AIDS, in terms of having the infection themselves, potentially even the one who's the caregiver having been the person who transmitted it to the one who's more sick and dying.
So, there are lots of very complicated dynamics that can impact on what happens when this is literally a disease that affects families, not only by the burden of disease, but by people having, in fact, the same condition, which can spread through, obviously intimate contact. So, I think that's something to always keep in mind, even though it's not always the case, but certainly that's in the background in everything that that implies. In addition, because of this new phase of prolong survival, many people have been caregivers for many, many years, even decades, and so when someone is coming to the end of life or is having a very complicated course with all these other co-morbidities over a period of years, if not more, the cumulative burden to caregivers can just grow and their own stresses, their own physical and emotional health can really come into play, whether or not, you know, they themselves may be HIV infected.
So, I think having support available and ongoing connection, and really sort of helping to encourage caregivers to take care of themselves and to deal with their own unfinished business in a sense, or their own health and well being, is really critical, because otherwise people may end up, you know, for what might seem like good reasons, or just because it's sort of the-- you know, the norm, focusing all their attention on the person who's sick over such a long period of time, and then they just end up being completely depleted or not cared for, and that can really be, you know, very depleting over time.
>> Is there anything else you would like to tell our listeners about caring for patients with late stage HIV AIDS? >> Yeah. I think it's important to restate that this is still a very stigmatized illness, and you know, we're not at the point yet in the sort of history of this where people feel comfortable talking to other people often about the fact that this is their diagnosis. I've had patients with AIDS who ironically and almost tragically seem to be relieved when they get a secondary diagnosis of cancer, because that means that they now have something that they can die from that's more sort of socially acceptable in a way, which is really very striking when you think about it, but that's, I think, still the context in which some people are living.
And so, issues that involved families and stigma, and vulnerability, and people being disenfranchised, I think those are all very much in the four when working with patients with AIDS. Likewise, it's just having to do with substance use, and sexual orientation as it may affect family dynamics, or family of origin versus current family, I mean those are all important and frequent. And the fact that the people, again, are living in this much more in a way, complex kind of trajectory now, where they may be dying of AIDS, they may be dying of something completely different, they may be dying of something that is developing in parallel to AIDs but not really AIDS itself.
So, it's very common now that people are fully controlled with the anti-retrovirals, their CD4 count is normal, their immune function is normal, their viral load is suppressed, and yet they're dying of liver failure from hepatitis C. Which years ago, no one lived long enough to get sick from, to die from. So, that kind of irony of having to navigate the late stages of this new kind of complex co-morbid frailty over many years is an important kind of construct that people may not be as familiar with or may not be as sensitive to. >> Thank you, Dr. Selwyn, for this discussion of overcoming the false dichotomy of curative versus palliative care for late stage HIV AIDS.
Additional information about this topic is available in Care at the Close of Life. This has been Joan Stephenson of JAMA, talking with Dr. Peter Selwyn about curative and palliative care for people with late stage HIV AIDS for JAMA evidence.
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