If and when the time comes to focus on comfort care closer to the end of life for a loved one, it might be time to consider hospice care.
Priya Kumthekar, MD, neuro-oncologist at Northwestern Memorial, discusses end of life care for patients with Glioblastoma and how we will work with you and your loved ones to ensure as safe and comfortable a transition as possible.
End-of-Life Care for Patients with Glioblastoma
Featured Speaker:
As a board-certified neurologist, she received her training at the Northwestern University Feinberg School of Medicine. Currently, she sees patients with both primary brain tumors and brain metastases from other systemic cancers. She is also involved in several clinical trials for glioblastoma including the first-of-its-kind spherical nucleic acid drug injected into the brain to target cancerous brain cells.
Priya Kumthekar, MD
Priya Kumthekar, MD, neuro-oncologist at Northwestern Memorial Hospital and assistant professor of neuro-oncology, hematology and oncology at the Northwestern University Feinberg School of Medicine. She also holds a leadership role as the director of the Brain Metastases Program at Northwestern Memorial Hospital.As a board-certified neurologist, she received her training at the Northwestern University Feinberg School of Medicine. Currently, she sees patients with both primary brain tumors and brain metastases from other systemic cancers. She is also involved in several clinical trials for glioblastoma including the first-of-its-kind spherical nucleic acid drug injected into the brain to target cancerous brain cells.
Transcription:
End-of-Life Care for Patients with Glioblastoma
Melanie Cole, MS: In the wake of political figures—such as Senator John McCain, Senator Edward Kennedy, and Beau Biden—passing away from glioblastoma, you might have questions about this form of brain cancer. My guest today is Dr. Priya Kumthekar. She’s a neurooncologist at Northwestern Memorial Hospital. Dr. Kumthekar, welcome to the show. Tell us a little bit about glioblastoma. What really is it?
Priya Kumthekar, MD: So, glioblastoma is a primary brain tumor. So that’s a tumor that originates in the brain itself. It’s formed at these glial cells, or helper cells, in the brain that can overgrow and misgrow causing a really difficult to treat tumor that’s incurable.
Melanie: Is this a primary cancer or can it be secondary from something else?
Dr. Kumthekar: This is specifically a primary cancer in the brain itself.
Melanie: Who is at risk? Are there certain risk factors and is there a genetic component to this?
Dr. Kumthekar: So, the majority, the vast majority of glioblastoma patients are what we call sporadic mutations. So, they happen almost like a fluke. They're not genetically inherited. We’ve looked at various epidemiologic studies and can't really find a specific exposure that can lead to glioblastoma. The only exception to that would be prior radiation to the brain. That’s a very, very small minority of the glioblastoma patient. Typically, it’s just sort of bad luck.
Melanie: Are there some symptoms that would send up red flags? As you know, Dr. Kumthekar, people get a headache and right away they think the worst that it could be some form of brain tumor. So, are there some symptoms that would send someone to see a neurologist or a neurosurgeon in the first place?
Dr. Kumthekar: Yes. Typically, I would call these stroke-like symptoms. So, things like weakness on one side of the body or another. Headaches that don’t go away as well as seizures can be presenting symptom of glioblastoma or vision changes or speech changes. The key is that these are changes that come and stay and persist that then lead to further workup and the discovery of a brain tumor.
Melanie: Speak about treatment options available and some of the promising new therapies that might be available for glioblastoma.
Dr. Kumthekar: So, the standard of care for glioblastoma includes maximal safe surgical resection. What we mean by that is we take out as much as safely possible in the brain. Of course, there are very many structures in the brain that are vital for survival. So, we can't just cut out any parts of the brain. Depending on the tumor location, that could mean a biopsy or a complete resection of your brain tumor. So not only is that part of the treatment, but after the surgery that’s when we’re able to have a clear diagnosis. We can look at that tissue under a microscope and determine with certainty what kind of tumor that it is.
Following surgery for a glioblastoma, standard of care includes radiation and oral chemotherapy followed by further oral chemotherapy, and at times a device called tumor treatment field.
Melanie: When is it necessary to stop treatment? How do you follow this type of tumor and see that the treatments that you're using are not necessarily having the desired effect? How do you start that conversation with the patient and their families?
Dr. Kumthekar: So, we watch our brain tumor patients very closely. There are two ways that we’re really monitoring that. So, the first is clinically. We’re making sure that their symptoms aren’t changing or worsening and that they're not getting any new symptoms. So typically, we’re seeing these patients every month to make sure… Really watching them like a hawk. Then about every two months, we’re doing an MRI of their brain. So radiographically we’re following them to make sure that there’s not any tumor growth that’s happening because sometimes that can happen even in the absence of symptoms. So, we want to make sure that we’re following our patients very closely in both symptomatic nature as well as radiographic changes.
So, throughout their course when we’re watching them very closely if they're getting treatment, all of our decision making comes from really weighing risks and benefits. So frequently at the beginning of a patient’s diagnostics course, the risks are often lower, and the benefits are higher to proceed with treatment. Meaning there’s more to gain with treatment than the side effects that would be imposed on them with the therapies. Often, as patients get deeper into their disease course and later into disease course, there might come a time when the risks of therapy might be greater than the potential benefits that a therapy can offer. That inflection point can be really different from patient to patient. For some, it can be 6 to 12 months into the therapy. For some, three or four years later. It just sort of depends. Really, it’s not the time that makes us say should we do treatment or not, but rather are the risks too high for the potential benefits gained with any given therapy.
Melanie: So then, what does that discussion look like, Dr. Kumthekar, with the patient and their families? Where does hospice then come into this picture?
Dr. Kumthekar: That’s a great question. So, for starters, this is the theme that I like to bring up throughout the course of therapy to let patients know that this is generally how we’re making our decisions in their best interest and weighing these risks and benefits. Often, we keep that talk longitudinal. If risks are increasing, a patient or their family, they can express, and we can discuss what their risk tolerance is. I think it’s also important to know that that ratio of risk and benefit is different for different patients. We all are human beings. Individual and variable risk tolerance. As long as the conversation is open, honest, and we’re weighing the appropriate pros and cons, this should be a longitudinal conversation.
In terms of hospice care, which is under the umbrella of palliative care, this is something that is of course brought up in a patient’s treatment course. Palliative care, however, the larger umbrella of that, is brought in earlier. So, to kind of backup a moment from that question, often I think, we use the term palliative care and hospice care synonymously, but they're not. Palliative care is something that can typically coexist with active tumor directed treatment. The idea of it is to really concentrate on a patient’s quality of life and their symptomatic control so that they can live their best life.
Hospice care, which does fall under the palliative care umbrella, is really a philosophy more than a specific care. It’s the philosophy that we concentrate on that point not on tumor directed therapies, like chemotherapy or radiation, but rather patient comfort. So, it’s not a specific set of drugs that are given to a patient. It’s not a specific place, but rather again a philosophy.
Melanie: Once somebody is enrolled in hospice, and I'm so glad that you cleared up the difference between palliative care and hospice care. Where palliative you can still receive some restorative treatments and work with your provider. What is the difference with hospice care? Is there no more restorative treatments? Is there no more resuscitative treatments involved? Tell us a little bit about the type of providers and services involved in hospice and end of life care.
Dr. Kumthekar: Sure. So, I guess first it would depend on how you define restorative treatment. What I would say instead is there’s no tumor directed therapy at that point. Rather, it’s all patient directed towards patient comfort and basically to achieve the patient’s most optimal quality of life. What I tell my patients is when we switch gears into hospice care and fully focus on a patient’s quality of life and symptomatic management, that doesn’t change their relationship with me. I will always be their doctor regardless if we are doing specific tumor directed chemotherapies or not. Because it’s my job to best advocate for the patient. Not only when we’re doing the most aggressive treatment, but also when we’re doing purely supportive care treatment like you mentioned.
So, the relationship with the patient’s doctor should not and does not change at that moment, but rather the focus then shifts from that palliative approach to the symptomatic approach. So, there are multiple settings in which a patient can be under hospice care. Much of this is decided purely on patient preference and where they want to spend the remainder of their days and where they would be happiest. Again, everything patient centric. So, for many of our patients, that location is home.
Hospice does a fantastic job offering their services so that there are appropriate setups in the home for home safety. That could include a hospital bed or certain lifts and so forth. They also provide nursing and can come out to the house, have visits with the patient, make sure that the patient doesn’t have to move around so much and leave the home for medical visits. Some patients, and in certain clinical circumstances, hospice care is an inpatient service that’s offered. These tend to be more critically sick patients, but don’t necessarily always have to be. That is exactly as it sounds. It’s an inpatient setting where patients are delivered supportive care measures.
Melanie: Then to wrap it up Dr. Kumthekar. What should someone do if they feel like their loved one may be ready for hospice care if they suffer from glioblastoma or any condition really? So, give us your best advice about what everyone’s been seeing in the media and why people like Senator John McCain opted to end his treatment, and what you would like them to know about this type of brain tumor and end of life care.
Dr. Kumthekar: So, there are a few things that I would want to send as a message to patients out there. The first is what does the fight against cancer, or really any disease, what does it mean and what does it look like? I think it takes a lot of strength to fight cancer. Particularly a really tough disease like glioblastoma. What we don’t always focus on it that it takes a lot of strength to also say doing further treatment is not the right thing for me right now. The amount of strength and courage that it takes to say that, like Senator McCain showed, is admirable and should be applauded. I think that these are conversations that a physician should be having longitudinally with patients. So, what I would say to the patients and families out there is make sure that you keep these conversations going with your clinician. It might not be the right time right now, but often just defining what that time would look like is a really important conversation to have with your doctor. I would encourage everyone to keep these conversations going longitudinally throughout the care of a patient.
Melanie: Thank you so much Dr. Kumthekar for coming on with us today, sharing your expertise, and explaining this type of brain tumor. And when it really is the time for families to start considering treatment and starting planning for end of life care. We’re seeing so much about it. Thank you again for joining us and explaining it all so well for us. You're listening to Northwestern Medicine pod talk. For more information on the latest advances in medicine, please visit nm.org. That’s nm.org. This is Melanie Cole. Thanks so much for listening.
End-of-Life Care for Patients with Glioblastoma
Melanie Cole, MS: In the wake of political figures—such as Senator John McCain, Senator Edward Kennedy, and Beau Biden—passing away from glioblastoma, you might have questions about this form of brain cancer. My guest today is Dr. Priya Kumthekar. She’s a neurooncologist at Northwestern Memorial Hospital. Dr. Kumthekar, welcome to the show. Tell us a little bit about glioblastoma. What really is it?
Priya Kumthekar, MD: So, glioblastoma is a primary brain tumor. So that’s a tumor that originates in the brain itself. It’s formed at these glial cells, or helper cells, in the brain that can overgrow and misgrow causing a really difficult to treat tumor that’s incurable.
Melanie: Is this a primary cancer or can it be secondary from something else?
Dr. Kumthekar: This is specifically a primary cancer in the brain itself.
Melanie: Who is at risk? Are there certain risk factors and is there a genetic component to this?
Dr. Kumthekar: So, the majority, the vast majority of glioblastoma patients are what we call sporadic mutations. So, they happen almost like a fluke. They're not genetically inherited. We’ve looked at various epidemiologic studies and can't really find a specific exposure that can lead to glioblastoma. The only exception to that would be prior radiation to the brain. That’s a very, very small minority of the glioblastoma patient. Typically, it’s just sort of bad luck.
Melanie: Are there some symptoms that would send up red flags? As you know, Dr. Kumthekar, people get a headache and right away they think the worst that it could be some form of brain tumor. So, are there some symptoms that would send someone to see a neurologist or a neurosurgeon in the first place?
Dr. Kumthekar: Yes. Typically, I would call these stroke-like symptoms. So, things like weakness on one side of the body or another. Headaches that don’t go away as well as seizures can be presenting symptom of glioblastoma or vision changes or speech changes. The key is that these are changes that come and stay and persist that then lead to further workup and the discovery of a brain tumor.
Melanie: Speak about treatment options available and some of the promising new therapies that might be available for glioblastoma.
Dr. Kumthekar: So, the standard of care for glioblastoma includes maximal safe surgical resection. What we mean by that is we take out as much as safely possible in the brain. Of course, there are very many structures in the brain that are vital for survival. So, we can't just cut out any parts of the brain. Depending on the tumor location, that could mean a biopsy or a complete resection of your brain tumor. So not only is that part of the treatment, but after the surgery that’s when we’re able to have a clear diagnosis. We can look at that tissue under a microscope and determine with certainty what kind of tumor that it is.
Following surgery for a glioblastoma, standard of care includes radiation and oral chemotherapy followed by further oral chemotherapy, and at times a device called tumor treatment field.
Melanie: When is it necessary to stop treatment? How do you follow this type of tumor and see that the treatments that you're using are not necessarily having the desired effect? How do you start that conversation with the patient and their families?
Dr. Kumthekar: So, we watch our brain tumor patients very closely. There are two ways that we’re really monitoring that. So, the first is clinically. We’re making sure that their symptoms aren’t changing or worsening and that they're not getting any new symptoms. So typically, we’re seeing these patients every month to make sure… Really watching them like a hawk. Then about every two months, we’re doing an MRI of their brain. So radiographically we’re following them to make sure that there’s not any tumor growth that’s happening because sometimes that can happen even in the absence of symptoms. So, we want to make sure that we’re following our patients very closely in both symptomatic nature as well as radiographic changes.
So, throughout their course when we’re watching them very closely if they're getting treatment, all of our decision making comes from really weighing risks and benefits. So frequently at the beginning of a patient’s diagnostics course, the risks are often lower, and the benefits are higher to proceed with treatment. Meaning there’s more to gain with treatment than the side effects that would be imposed on them with the therapies. Often, as patients get deeper into their disease course and later into disease course, there might come a time when the risks of therapy might be greater than the potential benefits that a therapy can offer. That inflection point can be really different from patient to patient. For some, it can be 6 to 12 months into the therapy. For some, three or four years later. It just sort of depends. Really, it’s not the time that makes us say should we do treatment or not, but rather are the risks too high for the potential benefits gained with any given therapy.
Melanie: So then, what does that discussion look like, Dr. Kumthekar, with the patient and their families? Where does hospice then come into this picture?
Dr. Kumthekar: That’s a great question. So, for starters, this is the theme that I like to bring up throughout the course of therapy to let patients know that this is generally how we’re making our decisions in their best interest and weighing these risks and benefits. Often, we keep that talk longitudinal. If risks are increasing, a patient or their family, they can express, and we can discuss what their risk tolerance is. I think it’s also important to know that that ratio of risk and benefit is different for different patients. We all are human beings. Individual and variable risk tolerance. As long as the conversation is open, honest, and we’re weighing the appropriate pros and cons, this should be a longitudinal conversation.
In terms of hospice care, which is under the umbrella of palliative care, this is something that is of course brought up in a patient’s treatment course. Palliative care, however, the larger umbrella of that, is brought in earlier. So, to kind of backup a moment from that question, often I think, we use the term palliative care and hospice care synonymously, but they're not. Palliative care is something that can typically coexist with active tumor directed treatment. The idea of it is to really concentrate on a patient’s quality of life and their symptomatic control so that they can live their best life.
Hospice care, which does fall under the palliative care umbrella, is really a philosophy more than a specific care. It’s the philosophy that we concentrate on that point not on tumor directed therapies, like chemotherapy or radiation, but rather patient comfort. So, it’s not a specific set of drugs that are given to a patient. It’s not a specific place, but rather again a philosophy.
Melanie: Once somebody is enrolled in hospice, and I'm so glad that you cleared up the difference between palliative care and hospice care. Where palliative you can still receive some restorative treatments and work with your provider. What is the difference with hospice care? Is there no more restorative treatments? Is there no more resuscitative treatments involved? Tell us a little bit about the type of providers and services involved in hospice and end of life care.
Dr. Kumthekar: Sure. So, I guess first it would depend on how you define restorative treatment. What I would say instead is there’s no tumor directed therapy at that point. Rather, it’s all patient directed towards patient comfort and basically to achieve the patient’s most optimal quality of life. What I tell my patients is when we switch gears into hospice care and fully focus on a patient’s quality of life and symptomatic management, that doesn’t change their relationship with me. I will always be their doctor regardless if we are doing specific tumor directed chemotherapies or not. Because it’s my job to best advocate for the patient. Not only when we’re doing the most aggressive treatment, but also when we’re doing purely supportive care treatment like you mentioned.
So, the relationship with the patient’s doctor should not and does not change at that moment, but rather the focus then shifts from that palliative approach to the symptomatic approach. So, there are multiple settings in which a patient can be under hospice care. Much of this is decided purely on patient preference and where they want to spend the remainder of their days and where they would be happiest. Again, everything patient centric. So, for many of our patients, that location is home.
Hospice does a fantastic job offering their services so that there are appropriate setups in the home for home safety. That could include a hospital bed or certain lifts and so forth. They also provide nursing and can come out to the house, have visits with the patient, make sure that the patient doesn’t have to move around so much and leave the home for medical visits. Some patients, and in certain clinical circumstances, hospice care is an inpatient service that’s offered. These tend to be more critically sick patients, but don’t necessarily always have to be. That is exactly as it sounds. It’s an inpatient setting where patients are delivered supportive care measures.
Melanie: Then to wrap it up Dr. Kumthekar. What should someone do if they feel like their loved one may be ready for hospice care if they suffer from glioblastoma or any condition really? So, give us your best advice about what everyone’s been seeing in the media and why people like Senator John McCain opted to end his treatment, and what you would like them to know about this type of brain tumor and end of life care.
Dr. Kumthekar: So, there are a few things that I would want to send as a message to patients out there. The first is what does the fight against cancer, or really any disease, what does it mean and what does it look like? I think it takes a lot of strength to fight cancer. Particularly a really tough disease like glioblastoma. What we don’t always focus on it that it takes a lot of strength to also say doing further treatment is not the right thing for me right now. The amount of strength and courage that it takes to say that, like Senator McCain showed, is admirable and should be applauded. I think that these are conversations that a physician should be having longitudinally with patients. So, what I would say to the patients and families out there is make sure that you keep these conversations going with your clinician. It might not be the right time right now, but often just defining what that time would look like is a really important conversation to have with your doctor. I would encourage everyone to keep these conversations going longitudinally throughout the care of a patient.
Melanie: Thank you so much Dr. Kumthekar for coming on with us today, sharing your expertise, and explaining this type of brain tumor. And when it really is the time for families to start considering treatment and starting planning for end of life care. We’re seeing so much about it. Thank you again for joining us and explaining it all so well for us. You're listening to Northwestern Medicine pod talk. For more information on the latest advances in medicine, please visit nm.org. That’s nm.org. This is Melanie Cole. Thanks so much for listening.