I did the first interview for my study today. Not a lot to talk about yet--I have to listen to the recoding again, do my summary notes, and then start transcribing.
But one thing my participant said today struck me. Talking about her 100+ year old mother with breast cancer, she told me that they never thought about trying to treat it "at 104, what would be the point? What would be her quality of life?"
How affirming to see not everyone thinks any threat to life needs to be fought tooth and nail, no matter what the context.
Showing posts with label end-of-life decision-making. Show all posts
Showing posts with label end-of-life decision-making. Show all posts
Wednesday, March 25, 2009
Thursday, January 24, 2008
Communication
I actually have a nice, juicy, post on palliative sedation I've been working on, but I keep getting bogged down and distracted by things like, work, and writing my first chapter. In the mean time, I'm trying to get better at the short pithy posts.
Recent conversation during a "toxicity check" (assessment of patients ability to continue to receive chemotherapy):
NP: "If something should happen and you were unable to make your own decisions, who would you want to speak for you?"
Patient: "My wife."
NP: "And she knows what you would want? What kind of decisions you would make?"
Patient: "Oh yeah."
Patient's wife: "Oh no I don't!"*
Unfortunately, this is more the norm than the exception. I remember at the annual hospice conference last year there was a presentation of study that involved health care proxies, and the majority of the participants didn't even know they'd been named as the medical durable power of attorney until their loved one was incapacitated and they were being asked to make decisions! (apologies for not being able to cite the study or the presentation, all I can remember is that it was presented by R. Sean Morrison -- if anyone knows the study I'm talking about, please let me know!)
Think of this as a wake-up call: if you have strong thoughts about what kind of care you'd want in a life-threatening situation (and if you don't, you should start thinking about it), talk to the people people who would be making decisions for you if you can't speak for yourself. You owe it to yourself, and to them.
*I can't help but wonder if this sparked a conversation between them about this. I sure hope it did, but I'm not confident that's the case. As it wasn't my visit (I was observing E.) I didn't pursue it.
Recent conversation during a "toxicity check" (assessment of patients ability to continue to receive chemotherapy):
NP: "If something should happen and you were unable to make your own decisions, who would you want to speak for you?"
Patient: "My wife."
NP: "And she knows what you would want? What kind of decisions you would make?"
Patient: "Oh yeah."
Patient's wife: "Oh no I don't!"*
Unfortunately, this is more the norm than the exception. I remember at the annual hospice conference last year there was a presentation of study that involved health care proxies, and the majority of the participants didn't even know they'd been named as the medical durable power of attorney until their loved one was incapacitated and they were being asked to make decisions! (apologies for not being able to cite the study or the presentation, all I can remember is that it was presented by R. Sean Morrison -- if anyone knows the study I'm talking about, please let me know!)
Think of this as a wake-up call: if you have strong thoughts about what kind of care you'd want in a life-threatening situation (and if you don't, you should start thinking about it), talk to the people people who would be making decisions for you if you can't speak for yourself. You owe it to yourself, and to them.
*I can't help but wonder if this sparked a conversation between them about this. I sure hope it did, but I'm not confident that's the case. As it wasn't my visit (I was observing E.) I didn't pursue it.
Sunday, August 26, 2007
Deactivating ICDs
Here's an ethical question for you:
When is it appropriate to deactivate an ICD (implanted cardioverter-defibrilator)? To give some background: an ICD is a device that is surgically placed in the chest of a person who are at risk of sudden cardiac death due to ventricular fibrillation. Unlike a pacemaker, which uses electrical impulses to control the heart rate, the ICD "shocks" the heart when detecting an abnormal rhythm--just like the paddles used externally. From what I hear and read, the shock is a pretty nasty thing, and can cause pain, anxiety and a loss of consciousness. The issue here, is that when someone is close to death, their heart rhythm can go wacky, resulting in repeated shocks being delivered by the ICD. Turning off an ICD is not a simple matter: it is a process that requires specific skills and equipment. Theoretically, one can deactivate (temporarily) an ICD with the use of a magnet, but it is a stopgap measure--it needs to be taped to the patient's chest to keep it deactivated, and, I've read that sometimes the magnets don't work.
We currently have a patient, end-stage cancer, who also has an ICD. It has been discussed with him at least twice, and he has declined to have his ICD turned off. The problem, is that the other day, he got up unassisted (he's pretty weak) and was shocked by his ICD, causing him to blackout. Since then he has been anxious and afraid to sleep: afraid that he'll be shocked in his sleep. On Friday night, I managed to reduce his anxiety by providing him with an anti-anxiolytic and pain medicine. When I was back on Sunday afternoon, and heard in report that he was again, not sleeping and anxious, I decided to go down and talk over his options. Options seemed pretty limited: continuing to provide support and comfort via medication, conversation and presence, and, as far as I could see, also included offering to tape that big ol' donut shaped magnet onto him. The issues with the latter are multiple:
But what if he had been more awake and I less busy with another patient who was needing one-on-one care monitoring for delirium? What about the next time we have a patient in this situation? What if he/she clearly does not have decisional capacity, and, like is so often the case, has family members who disagree on the appropriate course?
This problem is not going to go away. Rather, it is most likely to come up more often as time wears on.
I did a quick lit search and found that:
When is it appropriate to deactivate an ICD (implanted cardioverter-defibrilator)? To give some background: an ICD is a device that is surgically placed in the chest of a person who are at risk of sudden cardiac death due to ventricular fibrillation. Unlike a pacemaker, which uses electrical impulses to control the heart rate, the ICD "shocks" the heart when detecting an abnormal rhythm--just like the paddles used externally. From what I hear and read, the shock is a pretty nasty thing, and can cause pain, anxiety and a loss of consciousness. The issue here, is that when someone is close to death, their heart rhythm can go wacky, resulting in repeated shocks being delivered by the ICD. Turning off an ICD is not a simple matter: it is a process that requires specific skills and equipment. Theoretically, one can deactivate (temporarily) an ICD with the use of a magnet, but it is a stopgap measure--it needs to be taped to the patient's chest to keep it deactivated, and, I've read that sometimes the magnets don't work.
We currently have a patient, end-stage cancer, who also has an ICD. It has been discussed with him at least twice, and he has declined to have his ICD turned off. The problem, is that the other day, he got up unassisted (he's pretty weak) and was shocked by his ICD, causing him to blackout. Since then he has been anxious and afraid to sleep: afraid that he'll be shocked in his sleep. On Friday night, I managed to reduce his anxiety by providing him with an anti-anxiolytic and pain medicine. When I was back on Sunday afternoon, and heard in report that he was again, not sleeping and anxious, I decided to go down and talk over his options. Options seemed pretty limited: continuing to provide support and comfort via medication, conversation and presence, and, as far as I could see, also included offering to tape that big ol' donut shaped magnet onto him. The issues with the latter are multiple:
- He is confused, and I'm not sure about his decision-making ability
- He is fairly withdrawn, and when I attempt to talk with him he pretty much shuts me out
- What are the ethics here? How confused is without capacity to make appropriate decisions? What are the ethics of doing a stop-gap measure that may, or may not work?
But what if he had been more awake and I less busy with another patient who was needing one-on-one care monitoring for delirium? What about the next time we have a patient in this situation? What if he/she clearly does not have decisional capacity, and, like is so often the case, has family members who disagree on the appropriate course?
This problem is not going to go away. Rather, it is most likely to come up more often as time wears on.
I did a quick lit search and found that:
- Deactivating ICDs is in general considered ethical if it is the patient's desire, or the desire of the patient's surrogate.
- The most discussed aspect of deactivating ICDs in the articles I read was the lack of discussion about this issue with patients before it becomes critical with a decision needed now (as in the patient is unconscious, dying and receiving repeated shocks). Sounds like so many of the end-of-life discussions that should, and don't happen (or happen too late).
- Christian Sinclair over at Pallimed has contributed to articles in health care journals about this subject at least twice. And in a bit of synchronicity, Pallimed has a new post up about heart failure and implantable devices.
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