Boston Globe opinion piece on decision aids for dying patients on end-of-life care options

Angelo Volandes, MD, a physician at Massachusetts General Hospital, wrote an opinion piece published in the Boston Globe today.  He tells the story of a patient dying of cancer, with whom he brought up the topic of end-of-life care options:

“For the next hour I introduced a vocabulary as foreign to her as spondee and trochee were to me. Life-prolonging treatment and CPR, ventilators and intubation, DNR and DNI — terms that she would need to learn quickly. Unfortunately, I was trying to teach her a new lexicon in the midst of the haze of nausea and hospitalization.

Dazed and confused, they looked at me blankly. Words often fail us in medicine. How could I explain these abstract ideas and treatments? Most patients think hospitals and medical interventions look like what they see on television where most survive CPR beautifully; the truth is most people with advanced incurable cancer do not do well with these interventions and often suffer at the end of life.

Finally, I tried a different approach. “Do you mind if we take a walk through the ICU?” I said.

If words failed me, perhaps seeing the intensive care unit would help. Seated in a wheelchair …Helen got a tour of the ICU, where she saw an intubated patient on a ventilator and a patient having a large intravenous line placed. Her decision-making would be informed by what she saw, instead of having to imagine what my terms really meant.

When we arrived back at her room, she looked at me and said, “Words, words, words. . . Angelo, I understood every word that you said — CPR and breathing machines, but I had no idea that is what you meant.”

I was reprimanded by the ICU staff for bringing Helen and her husband on that tour, but I was quickly forgiven. Evidently, many felt, like me, that patients deserve to be educated in order to make informed decisions about end-of-life choices.”

That was years ago when he was a medical resident.

Today, he goes on to explain, he and others use video decision aids to help people think about care options.

View the original article here

Boston Globe opinion piece on decision aids for dying patients on end-of-life care options

Angelo Volandes, MD, a physician at Massachusetts General Hospital, wrote an opinion piece published in the Boston Globe today.  He tells the story of a patient dying of cancer, with whom he brought up the topic of end-of-life care options:

“For the next hour I introduced a vocabulary as foreign to her as spondee and trochee were to me. Life-prolonging treatment and CPR, ventilators and intubation, DNR and DNI — terms that she would need to learn quickly. Unfortunately, I was trying to teach her a new lexicon in the midst of the haze of nausea and hospitalization.

Dazed and confused, they looked at me blankly. Words often fail us in medicine. How could I explain these abstract ideas and treatments? Most patients think hospitals and medical interventions look like what they see on television where most survive CPR beautifully; the truth is most people with advanced incurable cancer do not do well with these interventions and often suffer at the end of life.

Finally, I tried a different approach. “Do you mind if we take a walk through the ICU?” I said.

If words failed me, perhaps seeing the intensive care unit would help. Seated in a wheelchair …Helen got a tour of the ICU, where she saw an intubated patient on a ventilator and a patient having a large intravenous line placed. Her decision-making would be informed by what she saw, instead of having to imagine what my terms really meant.

When we arrived back at her room, she looked at me and said, “Words, words, words. . . Angelo, I understood every word that you said — CPR and breathing machines, but I had no idea that is what you meant.”

I was reprimanded by the ICU staff for bringing Helen and her husband on that tour, but I was quickly forgiven. Evidently, many felt, like me, that patients deserve to be educated in order to make informed decisions about end-of-life choices.”

That was years ago when he was a medical resident.

Today, he goes on to explain, he and others use video decision aids to help people think about care options.

View the original article here

Sleep-dependent memory consolidation in patients with sleep disorders

Sleep can improve the off-line memory consolidation of new items of declarative and non-declarative information in healthy subjects, whereas acute sleep loss, as well as sleep restriction and fragmentation, impair consolidation. This suggests that, by modifying the amount and/or architecture of sleep, chronic sleep disorders may also lead to a lower gain in off-line consolidation, which in turn may be responsible for the varying levels of impaired performance at memory tasks usually observed in sleep-disordered patients.

The experimental studies conducted to date have shown specific impairments of sleep-dependent consolidation overall for verbal and visual declarative information in patients with primary insomnia, for verbal declarative information in patients with obstructive sleep apnoeas, and for visual procedural skills in patients with narcolepsy-cataplexy.

These findings corroborate the hypothesis that impaired consolidation is a consequence of the chronically altered organization of sleep. Moreover, they raise several novel questions as to: a) the reversibility of consolidation impairment in the case of effective treatment, b) the possible negative influence of altered prior sleep also on the encoding of new information, and c) the relationships between altered sleep and memory impairment in patients with other (medical, psychiatric or neurological) diseases associated with quantitative and/or qualitative changes of sleep architecture.

Table 1. Methodological characteristics and results of the experimental studies on memory consolidation during sleep in patients with chronic sleep disorders.

Abbreviations: DM = declarative memory; NC = narcolepsy with cataplexy; NDM = non declarative memory; OSA = obstructive sleep apnoea; PI = primary insomnia; REM = rapid eye movement (sleep); REMD = REM density; SE = sleep efficiency; SWS = slow wave sleep; SPT = sleep period time; SFI = sleep fragmentation index; SOA= stimulus onset asynchrony; TST = total sleep time; WASO = wake after sleep onset.

View Within Article

Copyright © 2012 Elsevier Ltd. All rights reserved.

View the original article here

Sleep-dependent memory consolidation in patients with sleep disorders

Sleep can improve the off-line memory consolidation of new items of declarative and non-declarative information in healthy subjects, whereas acute sleep loss, as well as sleep restriction and fragmentation, impair consolidation. This suggests that, by modifying the amount and/or architecture of sleep, chronic sleep disorders may also lead to a lower gain in off-line consolidation, which in turn may be responsible for the varying levels of impaired performance at memory tasks usually observed in sleep-disordered patients.

The experimental studies conducted to date have shown specific impairments of sleep-dependent consolidation overall for verbal and visual declarative information in patients with primary insomnia, for verbal declarative information in patients with obstructive sleep apnoeas, and for visual procedural skills in patients with narcolepsy-cataplexy.

These findings corroborate the hypothesis that impaired consolidation is a consequence of the chronically altered organization of sleep. Moreover, they raise several novel questions as to: a) the reversibility of consolidation impairment in the case of effective treatment, b) the possible negative influence of altered prior sleep also on the encoding of new information, and c) the relationships between altered sleep and memory impairment in patients with other (medical, psychiatric or neurological) diseases associated with quantitative and/or qualitative changes of sleep architecture.

Table 1. Methodological characteristics and results of the experimental studies on memory consolidation during sleep in patients with chronic sleep disorders.

Abbreviations: DM = declarative memory; NC = narcolepsy with cataplexy; NDM = non declarative memory; OSA = obstructive sleep apnoea; PI = primary insomnia; REM = rapid eye movement (sleep); REMD = REM density; SE = sleep efficiency; SWS = slow wave sleep; SPT = sleep period time; SFI = sleep fragmentation index; SOA= stimulus onset asynchrony; TST = total sleep time; WASO = wake after sleep onset.

View Within Article

Copyright © 2012 Elsevier Ltd. All rights reserved.

View the original article here

Sleep disturbance interventions for oncology patients: Steps forward and issues arising

Note to users: Corrected proofs are Articles in Press that contain the authors' corrections. Final citation details, e.g., volume/issue number, publication year and page numbers, still need to be added and the text might change before final publication.

Although corrected proofs do not have all bibliographic details available yet, they can already be cited using the year of online publication and the DOI , as follows: author(s), article title, journal (year), DOI. Please consult the journal's reference style for the exact appearance of these elements, abbreviation of journal names and use of punctuation.

When the final article is assigned to an issue of the journal, the Article in Press version will be removed and the final version will appear in the associated published issue of the journal. The date the article was first made available online will be carried over.

View the original article here

Sleep disturbance interventions for oncology patients: Steps forward and issues arising

Note to users: Corrected proofs are Articles in Press that contain the authors' corrections. Final citation details, e.g., volume/issue number, publication year and page numbers, still need to be added and the text might change before final publication.

Although corrected proofs do not have all bibliographic details available yet, they can already be cited using the year of online publication and the DOI , as follows: author(s), article title, journal (year), DOI. Please consult the journal's reference style for the exact appearance of these elements, abbreviation of journal names and use of punctuation.

When the final article is assigned to an issue of the journal, the Article in Press version will be removed and the final version will appear in the associated published issue of the journal. The date the article was first made available online will be carried over.

View the original article here

21 genetic Conditions that must be reported by patients if incidentally found throughout the genome sequencing

Illustration: DNA associated histones to form chromatin. Image source: Wikipedia.

There are no established guidelines on which genetic variants should be presented to the doctors as incidental findings from the whole genome sequencing. A recent study has shown that genetic specialists agreed that disease-causing mutations to genetic conditions 21 should be reported by patients.

For adult patients

APC-associated polyposis
Fabry disease
Familial Hypercholesterolemia
Galactosemia
Gaucher disease
Glycogen storage disease type IA
Hereditary Breast and ovarian cancer
Homocystinuria
Li-Fraumeni syndrome
Lynch syndrome
Multiple endocrine neoplasia type 1
Multiple endocrine neoplasia type 2
MYH-associated polyposis
Phenylketonuria
Disease of pompe
PTEN Hamartoma tumor syndrome
Retinoblastoma
Romano-Ward (long QT syndrome)
Tyrosinemia type 1
Von Hippel-Lindau disease
Wilson's disease

For pediatric patients (child)

PTEN Hamartoma tumor syndrome
Retinoblastoma
Romano-Ward (long QT syndrome)
Von Hippel-Lindau disease

Family history collection predicts cancer risk better than 23andMe genetic testing, according to a recent study by the Cleveland Clinic:

References

Concordance and discordance exploration for return of accidental discoveries to clinical sequencing. Green RC, JS, Berry, Biesecker LG GT Dimmock DP, Evans, JP, WW, MR. Grody, Kalia S Hegde, BR, Korf Krantz I, AL McGuire, Miller, DT, Murray MF, Nussbaum RL, Plon IF Rehm HL, Jacob HJ. Genet med. Apr 2012; 4: 405-10. DOI: 10.1038/2012.21. gim. Epub 15 Mar 2012.

Genome sequencing to add new twist to doctor-patient discussions. The American Medical Association, 2012.

How to talk to patients http://goo.gl/kkW4m genetic testing

 

21 genetic Conditions that must be reported by patients if incidentally found throughout the genome sequencing

Illustration: DNA associated histones to form chromatin. Image source: Wikipedia.

There are no established guidelines on which genetic variants should be presented to the doctors as incidental findings from the whole genome sequencing. A recent study has shown that genetic specialists agreed that disease-causing mutations to genetic conditions 21 should be reported by patients.

For adult patients

APC-associated polyposis
Fabry disease
Familial Hypercholesterolemia
Galactosemia
Gaucher disease
Glycogen storage disease type IA
Hereditary Breast and ovarian cancer
Homocystinuria
Li-Fraumeni syndrome
Lynch syndrome
Multiple endocrine neoplasia type 1
Multiple endocrine neoplasia type 2
MYH-associated polyposis
Phenylketonuria
Disease of pompe
PTEN Hamartoma tumor syndrome
Retinoblastoma
Romano-Ward (long QT syndrome)
Tyrosinemia type 1
Von Hippel-Lindau disease
Wilson's disease

For pediatric patients (child)

PTEN Hamartoma tumor syndrome
Retinoblastoma
Romano-Ward (long QT syndrome)
Von Hippel-Lindau disease

Family history collection predicts cancer risk better than 23andMe genetic testing, according to a recent study by the Cleveland Clinic:

References

Concordance and discordance exploration for return of accidental discoveries to clinical sequencing. Green RC, JS, Berry, Biesecker LG GT Dimmock DP, Evans, JP, WW, MR. Grody, Kalia S Hegde, BR, Korf Krantz I, AL McGuire, Miller, DT, Murray MF, Nussbaum RL, Plon IF Rehm HL, Jacob HJ. Genet med. Apr 2012; 4: 405-10. DOI: 10.1038/2012.21. gim. Epub 15 Mar 2012.

Genome sequencing to add new twist to doctor-patient discussions. The American Medical Association, 2012.

How to talk to patients http://goo.gl/kkW4m genetic testing

 

21 genetic Conditions that must be reported by patients if incidentally found throughout the genome sequencing

Illustration: DNA associated histones to form chromatin. Image source: Wikipedia.

There are no established guidelines on which genetic variants should be presented to the doctors as incidental findings from the whole genome sequencing. A recent study has shown that genetic specialists agreed that disease-causing mutations to genetic conditions 21 should be reported by patients.

For adult patients

APC-associated polyposis
Fabry disease
Familial Hypercholesterolemia
Galactosemia
Gaucher disease
Glycogen storage disease type IA
Hereditary Breast and ovarian cancer
Homocystinuria
Li-Fraumeni syndrome
Lynch syndrome
Multiple endocrine neoplasia type 1
Multiple endocrine neoplasia type 2
MYH-associated polyposis
Phenylketonuria
Disease of pompe
PTEN Hamartoma tumor syndrome
Retinoblastoma
Romano-Ward (long QT syndrome)
Tyrosinemia type 1
Von Hippel-Lindau disease
Wilson's disease

For pediatric patients (child)

PTEN Hamartoma tumor syndrome
Retinoblastoma
Romano-Ward (long QT syndrome)
Von Hippel-Lindau disease

Family history collection predicts cancer risk better than 23andMe genetic testing, according to a recent study by the Cleveland Clinic:

References

Concordance and discordance exploration for return of accidental discoveries to clinical sequencing. Green RC, JS, Berry, Biesecker LG GT Dimmock DP, Evans, JP, WW, MR. Grody, Kalia S Hegde, BR, Korf Krantz I, AL McGuire, Miller, DT, Murray MF, Nussbaum RL, Plon IF Rehm HL, Jacob HJ. Genet med. Apr 2012; 4: 405-10. DOI: 10.1038/2012.21. gim. Epub 15 Mar 2012.

Genome sequencing to add new twist to doctor-patient discussions. The American Medical Association, 2012.

How to talk to patients http://goo.gl/kkW4m genetic testing

 

21 genetic Conditions that must be reported by patients if incidentally found throughout the genome sequencing

Illustration: DNA associated histones to form chromatin. Image source: Wikipedia.
There are no established guidelines on which genetic variants should be presented to the doctors as incidental findings from the whole genome sequencing. A recent study has shown that genetic specialists agreed that disease-causing mutations to genetic conditions 21 should be reported by patients.
For adult patients
APC-associated polyposis
Fabry disease
Familial Hypercholesterolemia
Galactosemia
Gaucher disease
Glycogen storage disease type IA
Hereditary Breast and ovarian cancer
Homocystinuria
Li-Fraumeni syndrome
Lynch syndrome
Multiple endocrine neoplasia type 1
Multiple endocrine neoplasia type 2
MYH-associated polyposis
Phenylketonuria
Disease of pompe
PTEN Hamartoma tumor syndrome
Retinoblastoma
Romano-Ward (long QT syndrome)
Tyrosinemia type 1
Von Hippel-Lindau disease
Wilson's disease
For pediatric patients (child)
PTEN Hamartoma tumor syndrome
Retinoblastoma
Romano-Ward (long QT syndrome)
Von Hippel-Lindau disease
Family history collection predicts cancer risk better than 23andMe genetic testing, according to a recent study by the Cleveland Clinic:

References
Concordance and discordance exploration for return of accidental discoveries to clinical sequencing. Green RC, JS, Berry, Biesecker LG GT Dimmock DP, Evans, JP, WW, MR. Grody, Kalia S Hegde, BR, Korf Krantz I, AL McGuire, Miller, DT, Murray MF, Nussbaum RL, Plon IF Rehm HL, Jacob HJ. Genet med. Apr 2012; 4: 405-10. DOI: 10.1038/2012.21. gim. Epub 15 Mar 2012.
Genome sequencing to add new twist to doctor-patient discussions. The American Medical Association, 2012.
How to talk to patients http://goo.gl/kkW4m genetic testing

Patients Increasingly Are Seeking Medical Information Online

information online. Almost 20% of internet users have also gone online to look for others with similar medical problems.

Sixty percent of internet users for medical information think the information is either the same or better than the information received from their own doctor. Interesting enough, of those folks using the internet for health information, almost 60% of them did not discuss this information with their doctor.

What are patients looking at exactly? First and foremost they are looking at information related to their own condition around the web. This may include diagnostic options, treatment side effects, and for second opinions. Also, they may be looking up their doctor and his/her practice specifically for reputation.

Keep in mind that any person with a computer and a website or blog may place health information on the internet. It's not extremely difficult. What can be very difficult, however, is for the average consumer to delineate fact from fiction when reading through all of this material.

Additionally, there is no standard grading reference to ensure information online is of the highest integrity.

Regardless of this possibility, the fact that so much health information is available online allows consumers to become much more educated in their condition(s). They can participate more fully in treatment decisions and become actively engaged in their outcomes, After all, knowledge is power.

Health information from national medical societies can generally be trusted, such as the American Medical Association, American Cancer Society, etc. These are safe. However, if one is looking for medical information on groundbreaking technologies such as regenerative medicine, those sites are typically conservative.

Most medical journals are available online now, however to get full text one typically needs a subscription. Abstracts, which are concise summaries of research, are readily available online so if that's all that is necessary they are everywhere.

Most practices have a website these days and the better ones will have a blog or an educational component to them. Some have animated videos or narrated ones which can provide valuable information. Most procedures are widely discussed on the internet and one may see information from doctors along with patient experiences.

Patients more and more are seeking knowledge online, and the new reality is doctors can either contribute and embrace this phenomenon, or resist and have their pateints pass them by.

This post was made using the Auto Blogging Software from WebMagnates.org This line will not appear when posts are made after activating the software to full version.

Patients Increasingly Are Seeking Medical Information Online

information online. Almost 20% of internet users have also gone online to look for others with similar medical problems.

Sixty percent of internet users for medical information think the information is either the same or better than the information received from their own doctor. Interesting enough, of those folks using the internet for health information, almost 60% of them did not discuss this information with their doctor.

What are patients looking at exactly? First and foremost they are looking at information related to their own condition around the web. This may include diagnostic options, treatment side effects, and for second opinions. Also, they may be looking up their doctor and his/her practice specifically for reputation.

Keep in mind that any person with a computer and a website or blog may place health information on the internet. It's not extremely difficult. What can be very difficult, however, is for the average consumer to delineate fact from fiction when reading through all of this material.

Additionally, there is no standard grading reference to ensure information online is of the highest integrity.

Regardless of this possibility, the fact that so much health information is available online allows consumers to become much more educated in their condition(s). They can participate more fully in treatment decisions and become actively engaged in their outcomes, After all, knowledge is power.

Health information from national medical societies can generally be trusted, such as the American Medical Association, American Cancer Society, etc. These are safe. However, if one is looking for medical information on groundbreaking technologies such as regenerative medicine, those sites are typically conservative.

Most medical journals are available online now, however to get full text one typically needs a subscription. Abstracts, which are concise summaries of research, are readily available online so if that's all that is necessary they are everywhere.

Most practices have a website these days and the better ones will have a blog or an educational component to them. Some have animated videos or narrated ones which can provide valuable information. Most procedures are widely discussed on the internet and one may see information from doctors along with patient experiences.

Patients more and more are seeking knowledge online, and the new reality is doctors can either contribute and embrace this phenomenon, or resist and have their pateints pass them by.

This post was made using the Auto Blogging Software from WebMagnates.org This line will not appear when posts are made after activating the software to full version.

Patients Increasingly Are Seeking Medical Information Online

information online. Almost 20% of internet users have also gone online to look for others with similar medical problems.

Sixty percent of internet users for medical information think the information is either the same or better than the information received from their own doctor. Interesting enough, of those folks using the internet for health information, almost 60% of them did not discuss this information with their doctor.

What are patients looking at exactly? First and foremost they are looking at information related to their own condition around the web. This may include diagnostic options, treatment side effects, and for second opinions. Also, they may be looking up their doctor and his/her practice specifically for reputation.

Keep in mind that any person with a computer and a website or blog may place health information on the internet. It's not extremely difficult. What can be very difficult, however, is for the average consumer to delineate fact from fiction when reading through all of this material.

Additionally, there is no standard grading reference to ensure information online is of the highest integrity.

Regardless of this possibility, the fact that so much health information is available online allows consumers to become much more educated in their condition(s). They can participate more fully in treatment decisions and become actively engaged in their outcomes, After all, knowledge is power.

Health information from national medical societies can generally be trusted, such as the American Medical Association, American Cancer Society, etc. These are safe. However, if one is looking for medical information on groundbreaking technologies such as regenerative medicine, those sites are typically conservative.

Most medical journals are available online now, however to get full text one typically needs a subscription. Abstracts, which are concise summaries of research, are readily available online so if that's all that is necessary they are everywhere.

Most practices have a website these days and the better ones will have a blog or an educational component to them. Some have animated videos or narrated ones which can provide valuable information. Most procedures are widely discussed on the internet and one may see information from doctors along with patient experiences.

Patients more and more are seeking knowledge online, and the new reality is doctors can either contribute and embrace this phenomenon, or resist and have their pateints pass them by.

This post was made using the Auto Blogging Software from WebMagnates.org This line will not appear when posts are made after activating the software to full version.