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Paul B. Bascom, MD, discusses responding to requests for physician-assisted suicide.
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Paul B. Bascom, MD, discusses responding to requests for physician-assisted suicide.
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>> This is Christopher Muth, Editor at JAMA, and I'm interviewing Dr. Paul Bascom, who wrote a chapter entitled Responding to Requests for Physician-Assisted Suicide in JAMAevidence Care at the Close of Life. Thank you for joining us today, Dr. Bascom. Can you please tell us a little bit about yourself? >> I'm a palliative care physician. I was among the first group of palliative medicine physicians certified in this country back in the 1990s. I was a hospice medical director and the founder and director of the Oregon Health and Sciences University Palliative Medicine and Comfort Care Team, which first began in 1996.
>> In the chapter that you wrote for Care at the Close of Life was first published in 2002 and then updated in 2009. But I think a lot has changed over the past ten years or so with the issue of medically-assisted dying, including the language that we use to talk about it. So first off, can you please explain what is meant by physician aid-in-dying, and explain in a general way what the process actually involves? >> Physician aid-in-dying refers specifically to a legal process that was first established in Oregon by a citizen initiative first passed in 1995 and then upheld by the courts and re-upheld by another public vote in 1997.
Aid-in-dying specifically describes the ability of a terminally ill patient with less than six months to live to request of their physician a prescription for a lethal dose of medication, typically a barbiturate that a patient can take at a time of their own choosing by their own hand to bring about or hasten the end of their life. It's different than euthanasia in that euthanasia involves the physician directly administering an injection in order to bring about the end of life whereas an aid-in-dying, the patient must ingest the medication voluntarily by their own hand.
The legal requirements are that the person has a terminal illness, which is documented by an attending physician and by a consulting physician, and that they are evaluated for depression and any other condition that might have impacted the particular request. >> When we talk about aid-in-dying, I've noticed the terms or the phrases used are different. I'm not sure if they've changed over time or not, but are there certain phrases that are generally recommended or phrases that should generally be avoided?
>> My belief is that the words we use often reflect our politics, and the words that are chosen to describe it reflect a person's underlying political stance either for or against, and my desire is to create words or use words that are neutral and don't reflect a particular advocacy position. For example, to call it physician-assisted suicide is quite a specific way to label the process in a negative way since we can all agree that suicide is a horrible act and really unacceptable.
Contrariwise, the use of death with dignity to me tends to diminish all of the other deaths, the 99% of other deaths that don't involve this process by presuming, perhaps unintentionally, that dignity only exists when this process is followed. So I tend to stay away from the words death with dignity. So that's what was written in the legislation.
But aid-in-dying tends to be neutral but also tends to overlook all the other ways physicians and hospice workers aid patients in their last days. The organizations in Oregon involved in this work have tended to move toward the word hastening since it implies that the death is imminent and what is happening is a changing of the time frame of the death rather than a specific suicide, for example. >> I see. And so you have mentioned your involvement in Oregon very early on.
Can you talk a little bit about what changes have taken place over the past ten years or so in the United States with regard to physician aid-in-dying? >> Well, let me talk first about the experience in Oregon, which we're now at 20 years, and I would say that the experience has been quite consistent from year to year, the state of Oregon Public Health Department publishes an annual review listing the numbers of patients that have obtained prescriptions, the percentage of these that received a prescription and used it to bring about the end of their life, the various motivations, the diseases, diagnoses, insurance status, family status, and those markers, those results have remained quite stable over the years.
For the first 10 or 15 years was a gradual increase in the number of patients that received prescriptions, but even that has leveled off in the last few years. A number of other states have begun to put these processes into place, some by citizen initiative such as the state of Washington, others by state legislation. Recently, California has begun a process to allow this to go forward, but that is still incomplete and in limbo at the moment.
It does seem to have dropped off the map some in terms of a national area of controversy compared to the other issues that our country is grappling with and are foremost in the minds of people and in the political debate, this one does not seem to be nearly as intense a source of discussion as it was 20 years ago. >> And how common is physician aid-in-dying currently? >> In Oregon, as I said, the data are quite consistent and steady year to year.
One issue that was highlighted in the article that you won't find in the state official database is the frequency with which patients consider the option or that they might at some point hypothetically want to exercise this option, and that number is probably still around 10%, and then perhaps around 1% of people that are terminally ill will make a specific request of their physician for medicine to hasten or bring about the end of their life.
The actual percentage of people that receive a prescription is on the order of 0.2% or 2 per 1,000. And then of those, about a third die without using the prescription, and so the total numbers are still in the order of around 1 or 2 in 1,000. >> And then getting into some of the details on the more individual level, you had mentioned there's a requirement that the patient has a prognosis of six months or less and has been diagnosed with a terminal condition, and I'm assuming those are still in effect.
>> Correct. >> But then what are some of the more individualized reasons why a patient might consider a medically assisted death? >> The issues also my experience and also reported in our state database have also remained quite consistent that first of all it skews very strongly to certain diseases, and ALS, for example, though the total numbers are low, probably on the order of 1 in 10 patients with ALS that seek to control the end of their life through this process.
With malignancy, it might be on the order of 1 or 2%. There's some pulmonary diseases. And interestingly, cardiovascular diseases are quite underrepresented for reasons that aren't quite clear from either a cultural perspective or a nature of the disease process. The reasons for which people request this remain primarily around the issues of control, the desire to not be in a dependent state, or to not lose control of one's bodily functions or one's being during those last days and weeks of terminal illness.
>> I see. >> Some people have a specific concern about pain though, in my experience, those are the people that are reassured through the promise of good palliative care and good hospice care that their physical suffering will be attended to and can be attended to successfully. So as the gentleman in the article, who was used in the article to highlight these points, he was a gentleman with ALS that was fearful of respiratory distress and suffocation and made is his request for medication to bring about the end of his life.
And in that circumstance, once he was reassured that the hospice team in place would be capable of giving him whatever medication he needed for his physical suffering, then that alleviated his concerns, and he died without further pursuing request for medical aid-in-dying. >> That sort of touches on the next question I was going to ask, which was just when a patient does inquire about aid-in-dying, what are some of the initial questions that a physician might follow up the request with to explore why the patient might be considering this?
>> Again, the first advice is to not respond from a place of political position either in favor or support. Knowing that many, many people will ponder this opportunity but wonder if it might be suitable for them will even make a specific request, most of those people are exploring and trying to make sense of what's coming, and most of those people will have needs that can be met without this use of medically assisted death or medication to control the moment of dying.
So the issue is to understand what the expectations are, how they imagine that their end of life will come about, what specific concerns, fears do they have? Do they have particular goals they want to have happen and to create a kind of a common understanding for that person about what the trajectory of disease is likely to be and what are the challenges and opportunities that will present itself during that phase, and then once that process is established then was the discussion of whether or not having access to medication makes sense given those goals.
>> And then, if a patient is interested in having access to medication, what are the next steps? Are there formal processes in place for screening for depression and other things? Or how does it evolve? >> It depends on the health system with which the patient is affiliated. Some health systems are secular and have their own internal processes. The Catholic health systems and other religious health systems, according to their own institutional ethical beliefs, do not participate in that phase.
And there are public advocacy organizations that have arisen to help patients navigate that process of finding a physician that can participate, having these necessary evaluations for depression, confirming the terminal illness, and then identifying a pharmacy that can dispense the medication for it. >> I see. >> But, again, I think that the broader message is that there are many people that will make this request and will wonder if this is something that they're interested in.
And only a very small number then will proceed. And so the important message is that when a patient makes that request, it's an opportunity for a very broad conversation. It opens the door to have a very in-depth conversation about all kinds of issues. And at the end of that in-depth conversation, it may be the path forward to make a referral or for the physician who is willing to participate to continue that process towards the medical aid-in-dying, but in the large majority of those cases, the conversation will be fruitful helpful for the patient, and they will identify other solutions or other options for their particular concerns.
>> Yes, I think that's an important point because when the patient makes a request, even if the physician is part of a healthcare system or is morally opposed him or herself to physician aid-in-dying, it still seems like there's still a lot of important work to be done just exploring the upcoming thoughts and expectations about death. >> Correct. >> Can you give even some more sort of concrete examples of questions or broad topics that might be explored with a patient?
>> The questions are what do you envision? How do you expect the process to go? What have you been told? What have you experienced so far? What are your greatest fears? Who are the people around you? Where do you want to be? What are the things that are most important to you at this phase? It's important also to ask what the person's expectation is of what the death with dignity law in each jurisdiction if it's allowed -- what that allows for.
Many people still, after all this time, believe that euthanasia is one of the options that's allowed by law or that something can be administered at a time when they're no longer capable of making their own decisions. >> Do you have any other thoughts or anything else you wanted to share with our listeners? >> The message of the article, which in re-reading it, I think, is still as accurate and useful now as it was more than 15 years ago, which is that a request for medication to hasten death should be the beginning of a conversation, should open the door to a conversation and to respond based on one's personal opinions either yay or nay and move the process forward quickly or to shut the door quickly is to miss an important opportunity to improve the care of that particular patient.
>> Thank you, Dr. Bascom, for taking the time to speak with us. You've been listening to Chapter 30, Responding to Requests for Physician-Assisted Suicide from JAMAevidence Care at the Close of Life. This is Christopher Muth, Editor at JAMA with this JAMAevidence podcast. [ Music ]
Segment:0 .
>> This is Christopher Muth, Editor at JAMA, and I'm interviewing Dr. Paul Bascom, who wrote a chapter entitled Responding to Requests for Physician-Assisted Suicide in JAMAevidence Care at the Close of Life. Thank you for joining us today, Dr. Bascom. Can you please tell us a little bit about yourself? >> I'm a palliative care physician. I was among the first group of palliative medicine physicians certified in this country back in the 1990s. I was a hospice medical director and the founder and director of the Oregon Health and Sciences University Palliative Medicine and Comfort Care Team, which first began in 1996.
>> In the chapter that you wrote for Care at the Close of Life was first published in 2002 and then updated in 2009. But I think a lot has changed over the past ten years or so with the issue of medically-assisted dying, including the language that we use to talk about it. So first off, can you please explain what is meant by physician aid-in-dying, and explain in a general way what the process actually involves? >> Physician aid-in-dying refers specifically to a legal process that was first established in Oregon by a citizen initiative first passed in 1995 and then upheld by the courts and re-upheld by another public vote in 1997.
Aid-in-dying specifically describes the ability of a terminally ill patient with less than six months to live to request of their physician a prescription for a lethal dose of medication, typically a barbiturate that a patient can take at a time of their own choosing by their own hand to bring about or hasten the end of their life. It's different than euthanasia in that euthanasia involves the physician directly administering an injection in order to bring about the end of life whereas an aid-in-dying, the patient must ingest the medication voluntarily by their own hand.
The legal requirements are that the person has a terminal illness, which is documented by an attending physician and by a consulting physician, and that they are evaluated for depression and any other condition that might have impacted the particular request. >> When we talk about aid-in-dying, I've noticed the terms or the phrases used are different. I'm not sure if they've changed over time or not, but are there certain phrases that are generally recommended or phrases that should generally be avoided?
>> My belief is that the words we use often reflect our politics, and the words that are chosen to describe it reflect a person's underlying political stance either for or against, and my desire is to create words or use words that are neutral and don't reflect a particular advocacy position. For example, to call it physician-assisted suicide is quite a specific way to label the process in a negative way since we can all agree that suicide is a horrible act and really unacceptable.
Contrariwise, the use of death with dignity to me tends to diminish all of the other deaths, the 99% of other deaths that don't involve this process by presuming, perhaps unintentionally, that dignity only exists when this process is followed. So I tend to stay away from the words death with dignity. So that's what was written in the legislation.
But aid-in-dying tends to be neutral but also tends to overlook all the other ways physicians and hospice workers aid patients in their last days. The organizations in Oregon involved in this work have tended to move toward the word hastening since it implies that the death is imminent and what is happening is a changing of the time frame of the death rather than a specific suicide, for example. >> I see. And so you have mentioned your involvement in Oregon very early on.
Can you talk a little bit about what changes have taken place over the past ten years or so in the United States with regard to physician aid-in-dying? >> Well, let me talk first about the experience in Oregon, which we're now at 20 years, and I would say that the experience has been quite consistent from year to year, the state of Oregon Public Health Department publishes an annual review listing the numbers of patients that have obtained prescriptions, the percentage of these that received a prescription and used it to bring about the end of their life, the various motivations, the diseases, diagnoses, insurance status, family status, and those markers, those results have remained quite stable over the years.
For the first 10 or 15 years was a gradual increase in the number of patients that received prescriptions, but even that has leveled off in the last few years. A number of other states have begun to put these processes into place, some by citizen initiative such as the state of Washington, others by state legislation. Recently, California has begun a process to allow this to go forward, but that is still incomplete and in limbo at the moment.
It does seem to have dropped off the map some in terms of a national area of controversy compared to the other issues that our country is grappling with and are foremost in the minds of people and in the political debate, this one does not seem to be nearly as intense a source of discussion as it was 20 years ago. >> And how common is physician aid-in-dying currently? >> In Oregon, as I said, the data are quite consistent and steady year to year.
One issue that was highlighted in the article that you won't find in the state official database is the frequency with which patients consider the option or that they might at some point hypothetically want to exercise this option, and that number is probably still around 10%, and then perhaps around 1% of people that are terminally ill will make a specific request of their physician for medicine to hasten or bring about the end of their life.
The actual percentage of people that receive a prescription is on the order of 0.2% or 2 per 1,000. And then of those, about a third die without using the prescription, and so the total numbers are still in the order of around 1 or 2 in 1,000. >> And then getting into some of the details on the more individual level, you had mentioned there's a requirement that the patient has a prognosis of six months or less and has been diagnosed with a terminal condition, and I'm assuming those are still in effect.
>> Correct. >> But then what are some of the more individualized reasons why a patient might consider a medically assisted death? >> The issues also my experience and also reported in our state database have also remained quite consistent that first of all it skews very strongly to certain diseases, and ALS, for example, though the total numbers are low, probably on the order of 1 in 10 patients with ALS that seek to control the end of their life through this process.
With malignancy, it might be on the order of 1 or 2%. There's some pulmonary diseases. And interestingly, cardiovascular diseases are quite underrepresented for reasons that aren't quite clear from either a cultural perspective or a nature of the disease process. The reasons for which people request this remain primarily around the issues of control, the desire to not be in a dependent state, or to not lose control of one's bodily functions or one's being during those last days and weeks of terminal illness.
>> I see. >> Some people have a specific concern about pain though, in my experience, those are the people that are reassured through the promise of good palliative care and good hospice care that their physical suffering will be attended to and can be attended to successfully. So as the gentleman in the article, who was used in the article to highlight these points, he was a gentleman with ALS that was fearful of respiratory distress and suffocation and made is his request for medication to bring about the end of his life.
And in that circumstance, once he was reassured that the hospice team in place would be capable of giving him whatever medication he needed for his physical suffering, then that alleviated his concerns, and he died without further pursuing request for medical aid-in-dying. >> That sort of touches on the next question I was going to ask, which was just when a patient does inquire about aid-in-dying, what are some of the initial questions that a physician might follow up the request with to explore why the patient might be considering this?
>> Again, the first advice is to not respond from a place of political position either in favor or support. Knowing that many, many people will ponder this opportunity but wonder if it might be suitable for them will even make a specific request, most of those people are exploring and trying to make sense of what's coming, and most of those people will have needs that can be met without this use of medically assisted death or medication to control the moment of dying.
So the issue is to understand what the expectations are, how they imagine that their end of life will come about, what specific concerns, fears do they have? Do they have particular goals they want to have happen and to create a kind of a common understanding for that person about what the trajectory of disease is likely to be and what are the challenges and opportunities that will present itself during that phase, and then once that process is established then was the discussion of whether or not having access to medication makes sense given those goals.
>> And then, if a patient is interested in having access to medication, what are the next steps? Are there formal processes in place for screening for depression and other things? Or how does it evolve? >> It depends on the health system with which the patient is affiliated. Some health systems are secular and have their own internal processes. The Catholic health systems and other religious health systems, according to their own institutional ethical beliefs, do not participate in that phase.
And there are public advocacy organizations that have arisen to help patients navigate that process of finding a physician that can participate, having these necessary evaluations for depression, confirming the terminal illness, and then identifying a pharmacy that can dispense the medication for it. >> I see. >> But, again, I think that the broader message is that there are many people that will make this request and will wonder if this is something that they're interested in.
And only a very small number then will proceed. And so the important message is that when a patient makes that request, it's an opportunity for a very broad conversation. It opens the door to have a very in-depth conversation about all kinds of issues. And at the end of that in-depth conversation, it may be the path forward to make a referral or for the physician who is willing to participate to continue that process towards the medical aid-in-dying, but in the large majority of those cases, the conversation will be fruitful helpful for the patient, and they will identify other solutions or other options for their particular concerns.
>> Yes, I think that's an important point because when the patient makes a request, even if the physician is part of a healthcare system or is morally opposed him or herself to physician aid-in-dying, it still seems like there's still a lot of important work to be done just exploring the upcoming thoughts and expectations about death. >> Correct. >> Can you give even some more sort of concrete examples of questions or broad topics that might be explored with a patient?
>> The questions are what do you envision? How do you expect the process to go? What have you been told? What have you experienced so far? What are your greatest fears? Who are the people around you? Where do you want to be? What are the things that are most important to you at this phase? It's important also to ask what the person's expectation is of what the death with dignity law in each jurisdiction if it's allowed -- what that allows for.
Many people still, after all this time, believe that euthanasia is one of the options that's allowed by law or that something can be administered at a time when they're no longer capable of making their own decisions. >> Do you have any other thoughts or anything else you wanted to share with our listeners? >> The message of the article, which in re-reading it, I think, is still as accurate and useful now as it was more than 15 years ago, which is that a request for medication to hasten death should be the beginning of a conversation, should open the door to a conversation and to respond based on one's personal opinions either yay or nay and move the process forward quickly or to shut the door quickly is to miss an important opportunity to improve the care of that particular patient.
>> Thank you, Dr. Bascom, for taking the time to speak with us. You've been listening to Chapter 30, Responding to Requests for Physician-Assisted Suicide from JAMAevidence Care at the Close of Life. This is Christopher Muth, Editor at JAMA with this JAMAevidence podcast. [ Music ]
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