Hospice & Palliative Medicine

More than 40% of adults in the United States went without necessary medical care in 2010 due to cost, up from 29% a decade ago, according to the Commonwealth Fund’s Biennial Health Insurance Survey.

Skipping needed care such as prescription drugs, specialist visits, and follow-up treatment is even more common among moderate- and low-income groups. For example, 56% of Americans with household incomes under 200% of the federal poverty level went without necessary care last year, according to the survey, which was released on March 16.

The survey, which was conducted from July through November 2010, is based on phone interviews with a nationally representative sample of more than 4,000 U.S. adults aged 19 and older. The analysis is limited to the approximately 3,000 adults aged 19-64 years who responded to the survey.

Cost was an issue for those with and without health insurance. About two-thirds of adults who were uninsured during 2010 said they had trouble accessing care due to cost; 31% of insured respondents reported the same problem.

Preventive care also took a hit in 2010. Only half of adults surveyed reported that they were up to date on five recommended screening tests: blood pressure and cholesterol tests, mammograms, colon cancer screenings, and Pap tests. Those with lower incomes were less likely to get screened: While 65% of adults with a household income at or above 400% of the federal poverty level were up-to-date, only 36% of adults at less than 133% of the federal poverty level were.

"The survey findings paint a dire picture of the degree to which low- and moderate-income families are currently burdened by costs of care and the degree to which a severe economic crisis can affect the health security of working families," Sara R. Collins, Ph.D., vice president for Affordable Health Insurance at the Commonwealth Fund, said during a press conference to release the findings.

Dr. Collins said the controversial Affordable Care Act will help to address some of the problems highlighted in the survey by alleviating the cost burden on the lowest-income Americans. She cited the expansion of the Medicaid program and federal subsidies to purchase private health coverage, both of which begin in 2014, as ways to reduce out-of-pocket costs and improve access to care.

The Commonwealth Fund report also noted worsening trends in insurance coverage and medical debt over the last decade:

• About 28% of adults in the United States were uninsured for part of 2010, up from 24% in 2001.
• About 40% of adults reported that they had problems paying their medical bills in 2010, up from 34% in 2005.
• About 32% of Americans spent 10% or more of their household income on out-of-pocket costs and premiums in 2010. This is up from 23% in 2005 and 21% in 2001.

More than 40% of adults in the United States went without necessary medical care in 2010 due to cost, up from 29% a decade ago, according to the Commonwealth Fund’s Biennial Health Insurance Survey.

Skipping needed care such as prescription drugs, specialist visits, and follow-up treatment is even more common among moderate- and low-income groups. For example, 56% of Americans with household incomes under 200% of the federal poverty level went without necessary care last year, according to the survey, which was released on March 16.

The survey, which was conducted from July through November 2010, is based on phone interviews with a nationally representative sample of more than 4,000 U.S. adults aged 19 and older. The analysis is limited to the approximately 3,000 adults aged 19-64 years who responded to the survey.

Cost was an issue for those with and without health insurance. About two-thirds of adults who were uninsured during 2010 said they had trouble accessing care due to cost; 31% of insured respondents reported the same problem.

Preventive care also took a hit in 2010. Only half of adults surveyed reported that they were up to date on five recommended screening tests: blood pressure and cholesterol tests, mammograms, colon cancer screenings, and Pap tests. Those with lower incomes were less likely to get screened: While 65% of adults with a household income at or above 400% of the federal poverty level were up-to-date, only 36% of adults at less than 133% of the federal poverty level were.

"The survey findings paint a dire picture of the degree to which low- and moderate-income families are currently burdened by costs of care and the degree to which a severe economic crisis can affect the health security of working families," Sara R. Collins, Ph.D., vice president for Affordable Health Insurance at the Commonwealth Fund, said during a press conference to release the findings.

Dr. Collins said the controversial Affordable Care Act will help to address some of the problems highlighted in the survey by alleviating the cost burden on the lowest-income Americans. She cited the expansion of the Medicaid program and federal subsidies to purchase private health coverage, both of which begin in 2014, as ways to reduce out-of-pocket costs and improve access to care.

The Commonwealth Fund report also noted worsening trends in insurance coverage and medical debt over the last decade:

• About 28% of adults in the United States were uninsured for part of 2010, up from 24% in 2001.
• About 40% of adults reported that they had problems paying their medical bills in 2010, up from 34% in 2005.
• About 32% of Americans spent 10% or more of their household income on out-of-pocket costs and premiums in 2010. This is up from 23% in 2005 and 21% in 2001.

More than 40% of adults in the United States went without necessary medical care in 2010 due to cost, up from 29% a decade ago, according to the Commonwealth Fund’s Biennial Health Insurance Survey.

Skipping needed care such as prescription drugs, specialist visits, and follow-up treatment is even more common among moderate- and low-income groups. For example, 56% of Americans with household incomes under 200% of the federal poverty level went without necessary care last year, according to the survey, which was released on March 16.

The survey, which was conducted from July through November 2010, is based on phone interviews with a nationally representative sample of more than 4,000 U.S. adults aged 19 and older. The analysis is limited to the approximately 3,000 adults aged 19-64 years who responded to the survey.

Cost was an issue for those with and without health insurance. About two-thirds of adults who were uninsured during 2010 said they had trouble accessing care due to cost; 31% of insured respondents reported the same problem.

Preventive care also took a hit in 2010. Only half of adults surveyed reported that they were up to date on five recommended screening tests: blood pressure and cholesterol tests, mammograms, colon cancer screenings, and Pap tests. Those with lower incomes were less likely to get screened: While 65% of adults with a household income at or above 400% of the federal poverty level were up-to-date, only 36% of adults at less than 133% of the federal poverty level were.

"The survey findings paint a dire picture of the degree to which low- and moderate-income families are currently burdened by costs of care and the degree to which a severe economic crisis can affect the health security of working families," Sara R. Collins, Ph.D., vice president for Affordable Health Insurance at the Commonwealth Fund, said during a press conference to release the findings.

Dr. Collins said the controversial Affordable Care Act will help to address some of the problems highlighted in the survey by alleviating the cost burden on the lowest-income Americans. She cited the expansion of the Medicaid program and federal subsidies to purchase private health coverage, both of which begin in 2014, as ways to reduce out-of-pocket costs and improve access to care.

The Commonwealth Fund report also noted worsening trends in insurance coverage and medical debt over the last decade:

• About 28% of adults in the United States were uninsured for part of 2010, up from 24% in 2001.
• About 40% of adults reported that they had problems paying their medical bills in 2010, up from 34% in 2005.
• About 32% of Americans spent 10% or more of their household income on out-of-pocket costs and premiums in 2010. This is up from 23% in 2005 and 21% in 2001.

VANCOUVER, B.C. – Withdrawing medications at the end of life is often the right thing to do clinically, but it can make hospice patients feel abandoned, according to nurse Beverly Lunsford, Ph.D.

"People have it hammered in their heads to take their diabetes medications, their hypertension medications, and have done it faithfully for [decades]. Now you’re telling them to stop. They may have a real sense that isn’t right. Families may perceive medication discontinuation as substandard care or lack of care," said Dr. Lunsford, who coordinates the graduate program for palliative care nurse practitioners at George Washington University in Washington.

It’s important to reassure patients and families that’s not the case or, better yet, handle the situation in such a way that they don’t think so in the first place, Dr. Lunsford said at the annual meeting of the American Academy of Hospice and Palliative Care Medicine.

A review with the patient of his or her medications is a good place to start, said Dr. Robert Kaiser, associate geriatrics and palliative care professor at the university. In such "brown-bag reviews," patients bring in every medication they take, including nutritional supplements and other over-the-counter preparations. Clinicians then check whether the drugs’ original indications still apply and ask about side effects and adherence. Most hospice patients need such attention as they typically are on at least five drugs at admission to hospice, with more added for comfort care, Dr. Kaiser said.

Medication issues should also be incorporated into goals-of-care discussions, said Dr. Lunsford. When patients opt for comfort care, "you might sort out with them which medications they are taking for symptom relief and what medications they are taking for treating medical conditions" that are no longer a high priority, such as hypercholesterolemia, she said.

A patient might be more open to this discussion if a clinician points out that the person’s medical condition has changed – that he or she has lost weight, for instance – so certain drugs are less necessary. Once-tolerated doses may be too potent because of loss of kidney or liver function. Difficulty swallowing and memory loss may also make adherence increasingly burdensome, Dr. Kaiser said.

The goal is to cut unneeded medications so side effects, such as falls and confusion, and drug interactions don’t add discomfort to the dying process, he said. Picking which drugs to stop, however, is not an exact science. Life expectancy, how a drug meets care goals, and how long a drug takes to work are among some of the factors to consider.

Dr. Lunsford and Dr. Kaiser recommended several guides to withdrawing drugs at the end of life. The Medication Appropriateness Index, a 10-question tool for gauging appropriate drug use, can help, they said, as can the list of drugs and dosages to avoid in the elderly according to the Beers criteria (Arch. Intern. Med. 2006;166:605-9).

They cited other references making the point that drugs for chronic conditions may reasonably be discontinued. Statins, bisphosphonates, and cholinesterase inhibitors may be stopped in patients with advanced dementia, poor prognoses, or both, they said, and cholinesterase inhibitors and memantine may be discontinuation candidates because the evidence is marginal for their benefit in advanced dementia patients entering hospice or other palliative care (End of Life/Palliative Education Resource Center. Fast Fact and Concept #174 "Dementia Medications in Palliative Care," www.eperc.mcw.edu). Opioids, beta-blockers, clonidine, gabapentin, selective serotonin reuptake inhibitors, serotonin-norepinephrine reuptake inhibitors, and tricyclic antidepressants, among others, require tapering, said Dr. Lunsford and Dr. Kaiser, citing a recent study (JAMA 2010;304:1592-601). A drug holiday may be appropriate when there is uncertainty about withdrawing a medication, Dr. Kaiser said.

Dr. Lunsford cautioned that "many health care professionals may not feel they have the time" to decide what drugs to stop, negotiate the issue with the patient, taper doses, and monitor outcomes on subsequent visits. It’s important to do so, however, and to prevent conflict with peers by keeping them in the loop when discontinuing drugs, she said.

"You need to get them on the same page. Get the case manager involved if you’re not in direct contact with these people, or pick up the phone and [let them know] this is what your suggesting," she said.

Neither Dr. Lunsford nor Dr. Kaiser made conflict-of-interest disclosures.

VANCOUVER, B.C. – Withdrawing medications at the end of life is often the right thing to do clinically, but it can make hospice patients feel abandoned, according to nurse Beverly Lunsford, Ph.D.

"People have it hammered in their heads to take their diabetes medications, their hypertension medications, and have done it faithfully for [decades]. Now you’re telling them to stop. They may have a real sense that isn’t right. Families may perceive medication discontinuation as substandard care or lack of care," said Dr. Lunsford, who coordinates the graduate program for palliative care nurse practitioners at George Washington University in Washington.

It’s important to reassure patients and families that’s not the case or, better yet, handle the situation in such a way that they don’t think so in the first place, Dr. Lunsford said at the annual meeting of the American Academy of Hospice and Palliative Care Medicine.

A review with the patient of his or her medications is a good place to start, said Dr. Robert Kaiser, associate geriatrics and palliative care professor at the university. In such "brown-bag reviews," patients bring in every medication they take, including nutritional supplements and other over-the-counter preparations. Clinicians then check whether the drugs’ original indications still apply and ask about side effects and adherence. Most hospice patients need such attention as they typically are on at least five drugs at admission to hospice, with more added for comfort care, Dr. Kaiser said.

Medication issues should also be incorporated into goals-of-care discussions, said Dr. Lunsford. When patients opt for comfort care, "you might sort out with them which medications they are taking for symptom relief and what medications they are taking for treating medical conditions" that are no longer a high priority, such as hypercholesterolemia, she said.

A patient might be more open to this discussion if a clinician points out that the person’s medical condition has changed – that he or she has lost weight, for instance – so certain drugs are less necessary. Once-tolerated doses may be too potent because of loss of kidney or liver function. Difficulty swallowing and memory loss may also make adherence increasingly burdensome, Dr. Kaiser said.

The goal is to cut unneeded medications so side effects, such as falls and confusion, and drug interactions don’t add discomfort to the dying process, he said. Picking which drugs to stop, however, is not an exact science. Life expectancy, how a drug meets care goals, and how long a drug takes to work are among some of the factors to consider.

Dr. Lunsford and Dr. Kaiser recommended several guides to withdrawing drugs at the end of life. The Medication Appropriateness Index, a 10-question tool for gauging appropriate drug use, can help, they said, as can the list of drugs and dosages to avoid in the elderly according to the Beers criteria (Arch. Intern. Med. 2006;166:605-9).

They cited other references making the point that drugs for chronic conditions may reasonably be discontinued. Statins, bisphosphonates, and cholinesterase inhibitors may be stopped in patients with advanced dementia, poor prognoses, or both, they said, and cholinesterase inhibitors and memantine may be discontinuation candidates because the evidence is marginal for their benefit in advanced dementia patients entering hospice or other palliative care (End of Life/Palliative Education Resource Center. Fast Fact and Concept #174 "Dementia Medications in Palliative Care," www.eperc.mcw.edu). Opioids, beta-blockers, clonidine, gabapentin, selective serotonin reuptake inhibitors, serotonin-norepinephrine reuptake inhibitors, and tricyclic antidepressants, among others, require tapering, said Dr. Lunsford and Dr. Kaiser, citing a recent study (JAMA 2010;304:1592-601). A drug holiday may be appropriate when there is uncertainty about withdrawing a medication, Dr. Kaiser said.

Dr. Lunsford cautioned that "many health care professionals may not feel they have the time" to decide what drugs to stop, negotiate the issue with the patient, taper doses, and monitor outcomes on subsequent visits. It’s important to do so, however, and to prevent conflict with peers by keeping them in the loop when discontinuing drugs, she said.

"You need to get them on the same page. Get the case manager involved if you’re not in direct contact with these people, or pick up the phone and [let them know] this is what your suggesting," she said.

Neither Dr. Lunsford nor Dr. Kaiser made conflict-of-interest disclosures.

VANCOUVER, B.C. – Withdrawing medications at the end of life is often the right thing to do clinically, but it can make hospice patients feel abandoned, according to nurse Beverly Lunsford, Ph.D.

"People have it hammered in their heads to take their diabetes medications, their hypertension medications, and have done it faithfully for [decades]. Now you’re telling them to stop. They may have a real sense that isn’t right. Families may perceive medication discontinuation as substandard care or lack of care," said Dr. Lunsford, who coordinates the graduate program for palliative care nurse practitioners at George Washington University in Washington.

It’s important to reassure patients and families that’s not the case or, better yet, handle the situation in such a way that they don’t think so in the first place, Dr. Lunsford said at the annual meeting of the American Academy of Hospice and Palliative Care Medicine.

A review with the patient of his or her medications is a good place to start, said Dr. Robert Kaiser, associate geriatrics and palliative care professor at the university. In such "brown-bag reviews," patients bring in every medication they take, including nutritional supplements and other over-the-counter preparations. Clinicians then check whether the drugs’ original indications still apply and ask about side effects and adherence. Most hospice patients need such attention as they typically are on at least five drugs at admission to hospice, with more added for comfort care, Dr. Kaiser said.

Medication issues should also be incorporated into goals-of-care discussions, said Dr. Lunsford. When patients opt for comfort care, "you might sort out with them which medications they are taking for symptom relief and what medications they are taking for treating medical conditions" that are no longer a high priority, such as hypercholesterolemia, she said.

A patient might be more open to this discussion if a clinician points out that the person’s medical condition has changed – that he or she has lost weight, for instance – so certain drugs are less necessary. Once-tolerated doses may be too potent because of loss of kidney or liver function. Difficulty swallowing and memory loss may also make adherence increasingly burdensome, Dr. Kaiser said.

The goal is to cut unneeded medications so side effects, such as falls and confusion, and drug interactions don’t add discomfort to the dying process, he said. Picking which drugs to stop, however, is not an exact science. Life expectancy, how a drug meets care goals, and how long a drug takes to work are among some of the factors to consider.

Dr. Lunsford and Dr. Kaiser recommended several guides to withdrawing drugs at the end of life. The Medication Appropriateness Index, a 10-question tool for gauging appropriate drug use, can help, they said, as can the list of drugs and dosages to avoid in the elderly according to the Beers criteria (Arch. Intern. Med. 2006;166:605-9).

They cited other references making the point that drugs for chronic conditions may reasonably be discontinued. Statins, bisphosphonates, and cholinesterase inhibitors may be stopped in patients with advanced dementia, poor prognoses, or both, they said, and cholinesterase inhibitors and memantine may be discontinuation candidates because the evidence is marginal for their benefit in advanced dementia patients entering hospice or other palliative care (End of Life/Palliative Education Resource Center. Fast Fact and Concept #174 "Dementia Medications in Palliative Care," www.eperc.mcw.edu). Opioids, beta-blockers, clonidine, gabapentin, selective serotonin reuptake inhibitors, serotonin-norepinephrine reuptake inhibitors, and tricyclic antidepressants, among others, require tapering, said Dr. Lunsford and Dr. Kaiser, citing a recent study (JAMA 2010;304:1592-601). A drug holiday may be appropriate when there is uncertainty about withdrawing a medication, Dr. Kaiser said.

Dr. Lunsford cautioned that "many health care professionals may not feel they have the time" to decide what drugs to stop, negotiate the issue with the patient, taper doses, and monitor outcomes on subsequent visits. It’s important to do so, however, and to prevent conflict with peers by keeping them in the loop when discontinuing drugs, she said.

"You need to get them on the same page. Get the case manager involved if you’re not in direct contact with these people, or pick up the phone and [let them know] this is what your suggesting," she said.

Neither Dr. Lunsford nor Dr. Kaiser made conflict-of-interest disclosures.

VANCOUVER, B.C. – Within a year of implementation, mandatory palliative care screening significantly increased palliative care consults at St. John Hospital and Medical Center in Detroit.

The increased use of palliative care services saved the hospital about $700,000 in fiscal year 2008, because of shorter lengths of stay and patients opting for less-heroic care, among other factors.

As a result, St. John Providence Health System now screens patients admitted to St. John and its other four hospitals for palliative care needs, and is incorporating screening into its electronic health record (EHR) system, said nurse Elizabeth DiStefano, the system’s palliative care coordinator.

Planning for the screening program started in 2006 after hospital administrators realized that not all eligible patients were referred for palliative care consults at the five hospitals.

They decided to test-pilot mandatory screening at St. John to see if it would help, collaborating on the project with the Duke Institute on Care at the End of Life, Durham, N.C. The goal was to "increase access to palliative care," Ms. DiStefano said.

A multidisciplinary working group developed a two-page screening checklist and tested it in St. John’s 20-bed medical intensive care unit, an oncology unit, and two medical units, starting in April 2007.

After a year, they streamlined the checklist down to nine items, any one of which triggered a consult.

Mandatory screening had a significant impact. In 2006, before it was implemented, there were 444 palliative care consults; the number increased to 742 in 2007 and to 952 in 2008. The time from admission to consult dropped from about 9 days to about 6.

The success led to a systemwide rollout of palliative care screening, with the nine triggers now assessed in patients admitted to the health system’s five hospitals.

The nine triggers are:

• Code status changed to "do not resuscitate."

• Conflict about starting or stopping life-prolonging treatment.

• Discussion about goals of care or code status, and/or surrogate distress about decision making.

• A marked decrease in functional status within 2 months.

• Uncontrolled symptoms, such as pain or nausea, interfering with quality of life.

• Consideration of percutaneous endoscopic gastronomy tube placement.

• Admission from an extended-care facility with dependence for activities of daily living.

• Nonambulatory dementia with no speech, or with recurrent aspiration pneumonia.

• A patient or family request for palliative care.

The screening "identifies patients further upstream" who need services, "so it isn’t just end-of-life patients," Ms. DiStefano said.

Palliative care staffing varies at the hospitals based on size. At the 650-bed St. John Hospital, two nurse practitioners, a physician, a medical social worker, and a chaplain help with symptom management, discharge planning, advance directives, and other issues, such as spiritual and emotional needs.

Both patients and families "appreciate there’s a team effort [that looks after] the whole family, putting the whole picture together" to improve quality of life, Ms. DiStefano said.

Palliative care is cash-flow positive as well, with the savings covering the costs, and then some.

But for such a program to work, palliative care screening must be easily incorporated into existing procedures, she said.

For that reason, a mandatory field is being added to her health system’s EHR system that requires nurses to assess the nine triggers at admission, then again 5 days later. When a patient screens positive, the system sends an alert to the attending physician’s e-mail in-box asking for a palliative care referral order.

With the paper system, the triggers are assessed only at admission, and nurses call attendings when patients screen positive, she said.

Some physicians resisted palliative care during the pilot, thinking they could do a better job tending to patients’ needs themselves, or mistaking palliative care for hospice care.

One ICU doctor was reluctant to call in the palliative care team for a young patient. When asked why, he said he thought the 20-year-old patient was too young for hospice, Ms. DiStefano said.

When she explained that the team would talk to the patient and family about symptom control and quality of life, the physician became one of the team’s biggest supporters, Ms. DiStefano said.

The pilot was funded by local foundations and hospital administrators. Ms. DiStefano said she had no financial disclosures.

VANCOUVER, B.C. – Within a year of implementation, mandatory palliative care screening significantly increased palliative care consults at St. John Hospital and Medical Center in Detroit.

The increased use of palliative care services saved the hospital about $700,000 in fiscal year 2008, because of shorter lengths of stay and patients opting for less-heroic care, among other factors.

As a result, St. John Providence Health System now screens patients admitted to St. John and its other four hospitals for palliative care needs, and is incorporating screening into its electronic health record (EHR) system, said nurse Elizabeth DiStefano, the system’s palliative care coordinator.

Planning for the screening program started in 2006 after hospital administrators realized that not all eligible patients were referred for palliative care consults at the five hospitals.

They decided to test-pilot mandatory screening at St. John to see if it would help, collaborating on the project with the Duke Institute on Care at the End of Life, Durham, N.C. The goal was to "increase access to palliative care," Ms. DiStefano said.

A multidisciplinary working group developed a two-page screening checklist and tested it in St. John’s 20-bed medical intensive care unit, an oncology unit, and two medical units, starting in April 2007.

After a year, they streamlined the checklist down to nine items, any one of which triggered a consult.

Mandatory screening had a significant impact. In 2006, before it was implemented, there were 444 palliative care consults; the number increased to 742 in 2007 and to 952 in 2008. The time from admission to consult dropped from about 9 days to about 6.

The success led to a systemwide rollout of palliative care screening, with the nine triggers now assessed in patients admitted to the health system’s five hospitals.

The nine triggers are:

• Code status changed to "do not resuscitate."

• Conflict about starting or stopping life-prolonging treatment.

• Discussion about goals of care or code status, and/or surrogate distress about decision making.

• A marked decrease in functional status within 2 months.

• Uncontrolled symptoms, such as pain or nausea, interfering with quality of life.

• Consideration of percutaneous endoscopic gastronomy tube placement.

• Admission from an extended-care facility with dependence for activities of daily living.

• Nonambulatory dementia with no speech, or with recurrent aspiration pneumonia.

• A patient or family request for palliative care.

The screening "identifies patients further upstream" who need services, "so it isn’t just end-of-life patients," Ms. DiStefano said.

Palliative care staffing varies at the hospitals based on size. At the 650-bed St. John Hospital, two nurse practitioners, a physician, a medical social worker, and a chaplain help with symptom management, discharge planning, advance directives, and other issues, such as spiritual and emotional needs.

Both patients and families "appreciate there’s a team effort [that looks after] the whole family, putting the whole picture together" to improve quality of life, Ms. DiStefano said.

Palliative care is cash-flow positive as well, with the savings covering the costs, and then some.

But for such a program to work, palliative care screening must be easily incorporated into existing procedures, she said.

For that reason, a mandatory field is being added to her health system’s EHR system that requires nurses to assess the nine triggers at admission, then again 5 days later. When a patient screens positive, the system sends an alert to the attending physician’s e-mail in-box asking for a palliative care referral order.

With the paper system, the triggers are assessed only at admission, and nurses call attendings when patients screen positive, she said.

Some physicians resisted palliative care during the pilot, thinking they could do a better job tending to patients’ needs themselves, or mistaking palliative care for hospice care.

One ICU doctor was reluctant to call in the palliative care team for a young patient. When asked why, he said he thought the 20-year-old patient was too young for hospice, Ms. DiStefano said.

When she explained that the team would talk to the patient and family about symptom control and quality of life, the physician became one of the team’s biggest supporters, Ms. DiStefano said.

The pilot was funded by local foundations and hospital administrators. Ms. DiStefano said she had no financial disclosures.

VANCOUVER, B.C. – Within a year of implementation, mandatory palliative care screening significantly increased palliative care consults at St. John Hospital and Medical Center in Detroit.

The increased use of palliative care services saved the hospital about $700,000 in fiscal year 2008, because of shorter lengths of stay and patients opting for less-heroic care, among other factors.

As a result, St. John Providence Health System now screens patients admitted to St. John and its other four hospitals for palliative care needs, and is incorporating screening into its electronic health record (EHR) system, said nurse Elizabeth DiStefano, the system’s palliative care coordinator.

Planning for the screening program started in 2006 after hospital administrators realized that not all eligible patients were referred for palliative care consults at the five hospitals.

They decided to test-pilot mandatory screening at St. John to see if it would help, collaborating on the project with the Duke Institute on Care at the End of Life, Durham, N.C. The goal was to "increase access to palliative care," Ms. DiStefano said.

A multidisciplinary working group developed a two-page screening checklist and tested it in St. John’s 20-bed medical intensive care unit, an oncology unit, and two medical units, starting in April 2007.

After a year, they streamlined the checklist down to nine items, any one of which triggered a consult.

Mandatory screening had a significant impact. In 2006, before it was implemented, there were 444 palliative care consults; the number increased to 742 in 2007 and to 952 in 2008. The time from admission to consult dropped from about 9 days to about 6.

The success led to a systemwide rollout of palliative care screening, with the nine triggers now assessed in patients admitted to the health system’s five hospitals.

The nine triggers are:

• Code status changed to "do not resuscitate."

• Conflict about starting or stopping life-prolonging treatment.

• Discussion about goals of care or code status, and/or surrogate distress about decision making.

• A marked decrease in functional status within 2 months.

• Uncontrolled symptoms, such as pain or nausea, interfering with quality of life.

• Consideration of percutaneous endoscopic gastronomy tube placement.

• Admission from an extended-care facility with dependence for activities of daily living.

• Nonambulatory dementia with no speech, or with recurrent aspiration pneumonia.

• A patient or family request for palliative care.

The screening "identifies patients further upstream" who need services, "so it isn’t just end-of-life patients," Ms. DiStefano said.

Palliative care staffing varies at the hospitals based on size. At the 650-bed St. John Hospital, two nurse practitioners, a physician, a medical social worker, and a chaplain help with symptom management, discharge planning, advance directives, and other issues, such as spiritual and emotional needs.

Both patients and families "appreciate there’s a team effort [that looks after] the whole family, putting the whole picture together" to improve quality of life, Ms. DiStefano said.

Palliative care is cash-flow positive as well, with the savings covering the costs, and then some.

But for such a program to work, palliative care screening must be easily incorporated into existing procedures, she said.

For that reason, a mandatory field is being added to her health system’s EHR system that requires nurses to assess the nine triggers at admission, then again 5 days later. When a patient screens positive, the system sends an alert to the attending physician’s e-mail in-box asking for a palliative care referral order.

With the paper system, the triggers are assessed only at admission, and nurses call attendings when patients screen positive, she said.

Some physicians resisted palliative care during the pilot, thinking they could do a better job tending to patients’ needs themselves, or mistaking palliative care for hospice care.

One ICU doctor was reluctant to call in the palliative care team for a young patient. When asked why, he said he thought the 20-year-old patient was too young for hospice, Ms. DiStefano said.

When she explained that the team would talk to the patient and family about symptom control and quality of life, the physician became one of the team’s biggest supporters, Ms. DiStefano said.

The pilot was funded by local foundations and hospital administrators. Ms. DiStefano said she had no financial disclosures.

Dr. Stefan J. Friedrichsdorf has a list of "myths" about pediatric palliative care that he presents during lectures. Among them: that the death of a child in the United States is a rare event, that pediatric palliative care is just for children with cancer, and that care starts when treatment stops.

In his lectures – and in his work every day at Children’s Hospitals and Clinics of Minnesota, Minneapolis – Dr. Friedrichsdorf debunks these myths.

Photo credit: WFUBMC Photography

In January, he was one of two pediatricians who won national awards from the Hastings Center and a partnering foundation for their contributions to the broader field of palliative care. He and pediatrician Dr. Savithri Nageswaran of Brenner Children’s Hospital at Wake Forest University Baptist Medical Center in Winston-Salem, N.C., joined two geriatricians and an internist in receiving the award.

The pain and palliative care program at Dr. Friedrichsdorf’s institution is a relatively long-standing program, but pediatric palliative care is a new subspecialty and is still a relatively new area of pediatric care and of palliative medicine – one for which delivery models and educational pathways are still evolving, and one for which reimbursement is poor and regulatory barriers are challenging.

"It’s truly interdisciplinary, in that people need to really go beyond what they’ve been trained for," said Dr. Friedrichsdorf, medical director of the department of pain medicine, palliative care & integrative medicine at Children’s. "I’m nothing without my team."

Pediatric palliative care has been defined and described by the World Health Organization, the Institute of Medicine, the American Academy of Pediatrics, and other bodies as individualized, integrative care that is provided for children with life-threatening conditions. The care starts at diagnosis, continues through the trajectory of the illness, and is directed at the underlying illness and at the physical, emotional, social, and spiritual needs of the child and family.

More than 15,000 children and teens die in the United States each year from life-limiting diseases – and less than a quarter of them have cancer, according to data cited by Dr. Friedrichsdorf. Neuromuscular or neurodegenerative disorders cause a significant proportion of those deaths, followed by congenital or genetic disorders, cardiovascular disorders, and metabolic disorders.

"The vast majority of these children do not have access to pediatric palliative care in this country," Dr. Friedrichsdorf said in an interview. Data show that these children are suffering needlessly from pain, breathlessness, nausea, and vomiting.

Praised by the awards committee for "innovative symptom management, compassion, and family-centered care," Dr. Friedrichsdorf said he and his team take "an extremely aggressive approach" to managing pain and distressing symptoms in children with either life-threatening or life-limiting conditions.

He believes strong pain medications are underused in children (and one of the "myths" he debunks is that increasing doses of opioids and/or benzodiazepines causes respiratory depression and quickens death), but also that pharmacology alone is insufficient.

His department employs both pharmacology and complementary therapies such as biofeedback, massage, hypnosis, acupuncture, and acupressure. Physicians and other staff are trained in such modalities. "It’s not one or the other. It’s using the whole breadth [of therapies] at the same moment," said Dr. Friedrichsdorf, who is trained in self-hypnosis.

"We want to promise each family, if your child is suffering from distressing symptoms like nausea, pain, or dyspnea, we can usually make these symptoms go away," he said. "Our goal is for children to live as long as possible, as well as possible."

In addition to physicians and nurses, the pain and palliative care team at Children’s includes social workers, psychologists, a physical therapist, a child-life specialist, massage therapists, and advanced practice nurses.

Each of these professionals can see patients as part of a hospital-based pain and palliative care "rounding team" in the department’s pain and palliative care clinic, or for patients in the Minneapolis/St. Paul area, in the home through the department’s home-based component. The team can be called upon by anyone – a doctor, a patient, a relative or friend – for a consultation, and its members meet regularly to discuss patients.

"My physical therapist may tell me, for instance, that I need to change [a patient’s] pain medications because she sees side effects," Dr. Friedrichsdorf said.

A pilot study of pediatric palliative care teams at eight children’s hospitals, to be published soon, found that professionals in the teams had a "clear idea of what the other professionals offered to the patient and family," said Nancy Berlinger, Ph.D., deputy director and research scholar at the Hastings Center, which conducted the study with researchers at Rush University, Chicago.

A chaplain knows, for instance, how the physician and nurse are addressing the patient’s medical needs, and the physician is aware that the chaplain is supporting the parents and, in some cases, the child, she said in an interview.

"Having shared goals of care and strong communication is also important so that everything doesn’t have to be explained every time a shift changes or a patient is transferred to a different setting," she said.

"Most of these pediatric palliative care teams are fairly newly established," she noted. "There was some pediatric palliative care before then, but not necessarily with a strong team approach."

Dr. Nageswaran, who led the establishment of the first pediatric palliative care program at her hospital in 2008, said she was struck by the amount of coordination needed to provide good palliative care and by the flexibility needed to design a good program.

She and her colleagues started the program as a consult service for children who were hospitalized with complicated, often life-limiting conditions. The service used a half-time nurse coordinator, a one-quarter full-time equivalent (FTE) clinician post to be shared by a handful of physicians for rotating on-call duty, and a 1% FTE post for a physician coordinator.

"Very soon, we realized that the biggest need was to facilitate collaboration between multiple providers and to ensure sufficient continuity of care as these children transition back and forth from the hospital to home," Dr. Nageswaran said in an interview. "We weren’t achieving this with the traditional consult model where we’d see patients in the hospital and leave recommendations for the primary medical team."

In a subsequent restructuring, physician time was consolidated into a one-third–time FTE coordinator post, which Dr. Nageswaran fills herself, and funding was obtained from the federal Maternal and Child Health Bureau to add another half-time nurse coordinator who could focus on making home visits and coordinating home-based care in one local county.

The flexibility to coordinate care outside the hospital is critical, Dr. Nageswaran said. One of the 235 children cared for under the palliative care program thus far was a child with a rare genetic disorder characterized by skeletal abnormalities, urologic abnormalities, and severe neurologic impairment and seizures.

"The family wanted end-of-life care to be delivered at home, but they didn’t want to forgo medical care," Dr. Nageswaran recalled. "We went step-by-step, aligning the family’s wishes with the care the child received. We worked with the primary care doctor, the subspecialists, the home health agency, and the parents to provide medical treatment, pain and symptom management, and other care at home."

Both she and Dr. Friedrichsdorf emphasized the value of open inquiry with parents, children and families.

"Each family is unique in how they perceive illness and how they make decisions about treatment and end-of-life care," said Dr. Nageswaran. "When we meet families, we meet them without a set agenda, and we make sure we don’t impose our structure."

Similarly, Dr. Friedrichsdorf said, "When I enter a room, the first thing I say is, ‘How can I help you?’ We start with that open question." At that point, he said, surveys or other structured tools can be used to help determine needs and care plans.

One of the thorns in the field of pediatric palliative care is the unavailability of hospice services for many children, given the prognostic uncertainty of most childhood life-threatening conditions and the desire for continued treatment. Currently, most families have to forgo home-health services in order to receive hospice services.

Some states have taken action; policy reform passed in California in 2006, for instance, makes it easier for parents to utilize the Medi-Cal hospice benefit for children. A section of the federal Patient Protection and Affordable Care Act, moreover, is expected to change the Medicaid system to allow children with life-limiting conditions to receive both hospice care and curative treatment.

Another problem is poor provider reimbursement. "Physician services are reimbursed, but not enough to account for the amount of time involved," said Dr. Nageswaran. "\"And the services of nurses and social workers, who are key to pediatric palliative care programs, are not reimbursed."

She jump-started her program with a grant from the Duke Endowment, a private foundation, but now relies primarily on financial support from the hospital. Dr. Friedrichsdorf estimates that his hospital is reimbursed for only about half of its costs, and says that it relies heavily on philanthropy to make up the difference.

Philanthropy recently benefited the pediatric palliative care program at Akron (Ohio) Children’s Hospital. With $1.2 million in donations from the Haslinger Family Foundation and other leadership gifts, the hospital has created an endowed chair for its services, which began in 2002.]

One goal in the meantime, said Dr. Berlinger, is to "influence the culture of health care so that pediatric palliative care is recognized as ethically mandatory."

The $15,000 awards that Dr. Nageswaran and Dr. Friedrichsdorf received were given by the Hastings Center, a bioethics research institute based in Garrison, N.Y., in partnership with the Cunniff-Dixon Foundation, a foundation that focuses on the doctor-patient relationship near the end of life.

Pediatric Palliative Care Training

In terms of education, pediatric palliative care might be where pediatric subspecialties such as pulmonary care or neonatology were 25 years ago, Dr. Friedrichsdorf said, with an initial cadre of trained physicians having emerged.

In 2008, 47 physicians were certified in Hospice and Palliative Medicine (HPM) by the American Board of Pediatrics after taking the first American Board of Medical Specialties–recognized examination for the subspecialty. In total, 1,274 physicians were certified by various boards in the new subspecialty.

The American Board of Medical Specialties (ABMS) approved the creation of HPM as a subspecialty of 10 participating boards in 2006. Prior to 2006, board certification in hospice and palliative medicine was administered by the American Board of Hospice and Palliative Medicine but not recognized by the ABMS.

Other pediatricians have taken courses and attended educational retreats through organizations such as the Initiative for Pediatric Palliative Care, Dr. Berlinger said.

Ideally, she and Dr. Friedrichsdorf say, both educational tracks – fellowships and educational opportunities for mid-career pediatricians – will grow.

Starting in 2013, physicians who want to sit for the HPM board exam will have to have completed an Accreditation Council for Graduate Medical Education-accredited fellowship – a change that should spur the development of more fellowship programs. Children’s Hospitals and Clinics of Minnesota, Dr. Friedrichsdorf’s hospital, houses one of a handful of fellowship programs in pediatric palliative care. It has applied for ACGME approval.

Dr. Friedrichsdorf is the principal investigator of a National Institutes of Health/National Cancer Institute study on the creation and implementation of a pediatric palliative care curriculum that is slated to be offered to physicians who are in the midst of their careers and not seeking subspecialty training.

"Many professionals working in children’s hospitals are likely to care for a dying child, and need to be comfortable and knowledgeable," said Dr. Friedrichsdorf, who completed a fellowship in pediatric pain and palliative care at the Children’s Hospital at Westmead, Australia, after finishing his pediatric residency in Germany.

Dr. Stefan J. Friedrichsdorf has a list of "myths" about pediatric palliative care that he presents during lectures. Among them: that the death of a child in the United States is a rare event, that pediatric palliative care is just for children with cancer, and that care starts when treatment stops.

In his lectures – and in his work every day at Children’s Hospitals and Clinics of Minnesota, Minneapolis – Dr. Friedrichsdorf debunks these myths.

Photo credit: WFUBMC Photography

In January, he was one of two pediatricians who won national awards from the Hastings Center and a partnering foundation for their contributions to the broader field of palliative care. He and pediatrician Dr. Savithri Nageswaran of Brenner Children’s Hospital at Wake Forest University Baptist Medical Center in Winston-Salem, N.C., joined two geriatricians and an internist in receiving the award.

The pain and palliative care program at Dr. Friedrichsdorf’s institution is a relatively long-standing program, but pediatric palliative care is a new subspecialty and is still a relatively new area of pediatric care and of palliative medicine – one for which delivery models and educational pathways are still evolving, and one for which reimbursement is poor and regulatory barriers are challenging.

"It’s truly interdisciplinary, in that people need to really go beyond what they’ve been trained for," said Dr. Friedrichsdorf, medical director of the department of pain medicine, palliative care & integrative medicine at Children’s. "I’m nothing without my team."

Pediatric palliative care has been defined and described by the World Health Organization, the Institute of Medicine, the American Academy of Pediatrics, and other bodies as individualized, integrative care that is provided for children with life-threatening conditions. The care starts at diagnosis, continues through the trajectory of the illness, and is directed at the underlying illness and at the physical, emotional, social, and spiritual needs of the child and family.

More than 15,000 children and teens die in the United States each year from life-limiting diseases – and less than a quarter of them have cancer, according to data cited by Dr. Friedrichsdorf. Neuromuscular or neurodegenerative disorders cause a significant proportion of those deaths, followed by congenital or genetic disorders, cardiovascular disorders, and metabolic disorders.

"The vast majority of these children do not have access to pediatric palliative care in this country," Dr. Friedrichsdorf said in an interview. Data show that these children are suffering needlessly from pain, breathlessness, nausea, and vomiting.

Praised by the awards committee for "innovative symptom management, compassion, and family-centered care," Dr. Friedrichsdorf said he and his team take "an extremely aggressive approach" to managing pain and distressing symptoms in children with either life-threatening or life-limiting conditions.

He believes strong pain medications are underused in children (and one of the "myths" he debunks is that increasing doses of opioids and/or benzodiazepines causes respiratory depression and quickens death), but also that pharmacology alone is insufficient.

His department employs both pharmacology and complementary therapies such as biofeedback, massage, hypnosis, acupuncture, and acupressure. Physicians and other staff are trained in such modalities. "It’s not one or the other. It’s using the whole breadth [of therapies] at the same moment," said Dr. Friedrichsdorf, who is trained in self-hypnosis.

"We want to promise each family, if your child is suffering from distressing symptoms like nausea, pain, or dyspnea, we can usually make these symptoms go away," he said. "Our goal is for children to live as long as possible, as well as possible."

In addition to physicians and nurses, the pain and palliative care team at Children’s includes social workers, psychologists, a physical therapist, a child-life specialist, massage therapists, and advanced practice nurses.

Each of these professionals can see patients as part of a hospital-based pain and palliative care "rounding team" in the department’s pain and palliative care clinic, or for patients in the Minneapolis/St. Paul area, in the home through the department’s home-based component. The team can be called upon by anyone – a doctor, a patient, a relative or friend – for a consultation, and its members meet regularly to discuss patients.

"My physical therapist may tell me, for instance, that I need to change [a patient’s] pain medications because she sees side effects," Dr. Friedrichsdorf said.

A pilot study of pediatric palliative care teams at eight children’s hospitals, to be published soon, found that professionals in the teams had a "clear idea of what the other professionals offered to the patient and family," said Nancy Berlinger, Ph.D., deputy director and research scholar at the Hastings Center, which conducted the study with researchers at Rush University, Chicago.

A chaplain knows, for instance, how the physician and nurse are addressing the patient’s medical needs, and the physician is aware that the chaplain is supporting the parents and, in some cases, the child, she said in an interview.

"Having shared goals of care and strong communication is also important so that everything doesn’t have to be explained every time a shift changes or a patient is transferred to a different setting," she said.

"Most of these pediatric palliative care teams are fairly newly established," she noted. "There was some pediatric palliative care before then, but not necessarily with a strong team approach."

Dr. Nageswaran, who led the establishment of the first pediatric palliative care program at her hospital in 2008, said she was struck by the amount of coordination needed to provide good palliative care and by the flexibility needed to design a good program.

She and her colleagues started the program as a consult service for children who were hospitalized with complicated, often life-limiting conditions. The service used a half-time nurse coordinator, a one-quarter full-time equivalent (FTE) clinician post to be shared by a handful of physicians for rotating on-call duty, and a 1% FTE post for a physician coordinator.

"Very soon, we realized that the biggest need was to facilitate collaboration between multiple providers and to ensure sufficient continuity of care as these children transition back and forth from the hospital to home," Dr. Nageswaran said in an interview. "We weren’t achieving this with the traditional consult model where we’d see patients in the hospital and leave recommendations for the primary medical team."

In a subsequent restructuring, physician time was consolidated into a one-third–time FTE coordinator post, which Dr. Nageswaran fills herself, and funding was obtained from the federal Maternal and Child Health Bureau to add another half-time nurse coordinator who could focus on making home visits and coordinating home-based care in one local county.

The flexibility to coordinate care outside the hospital is critical, Dr. Nageswaran said. One of the 235 children cared for under the palliative care program thus far was a child with a rare genetic disorder characterized by skeletal abnormalities, urologic abnormalities, and severe neurologic impairment and seizures.

"The family wanted end-of-life care to be delivered at home, but they didn’t want to forgo medical care," Dr. Nageswaran recalled. "We went step-by-step, aligning the family’s wishes with the care the child received. We worked with the primary care doctor, the subspecialists, the home health agency, and the parents to provide medical treatment, pain and symptom management, and other care at home."

Both she and Dr. Friedrichsdorf emphasized the value of open inquiry with parents, children and families.

"Each family is unique in how they perceive illness and how they make decisions about treatment and end-of-life care," said Dr. Nageswaran. "When we meet families, we meet them without a set agenda, and we make sure we don’t impose our structure."

Similarly, Dr. Friedrichsdorf said, "When I enter a room, the first thing I say is, ‘How can I help you?’ We start with that open question." At that point, he said, surveys or other structured tools can be used to help determine needs and care plans.

One of the thorns in the field of pediatric palliative care is the unavailability of hospice services for many children, given the prognostic uncertainty of most childhood life-threatening conditions and the desire for continued treatment. Currently, most families have to forgo home-health services in order to receive hospice services.

Some states have taken action; policy reform passed in California in 2006, for instance, makes it easier for parents to utilize the Medi-Cal hospice benefit for children. A section of the federal Patient Protection and Affordable Care Act, moreover, is expected to change the Medicaid system to allow children with life-limiting conditions to receive both hospice care and curative treatment.

Another problem is poor provider reimbursement. "Physician services are reimbursed, but not enough to account for the amount of time involved," said Dr. Nageswaran. "\"And the services of nurses and social workers, who are key to pediatric palliative care programs, are not reimbursed."

She jump-started her program with a grant from the Duke Endowment, a private foundation, but now relies primarily on financial support from the hospital. Dr. Friedrichsdorf estimates that his hospital is reimbursed for only about half of its costs, and says that it relies heavily on philanthropy to make up the difference.

Philanthropy recently benefited the pediatric palliative care program at Akron (Ohio) Children’s Hospital. With $1.2 million in donations from the Haslinger Family Foundation and other leadership gifts, the hospital has created an endowed chair for its services, which began in 2002.]

One goal in the meantime, said Dr. Berlinger, is to "influence the culture of health care so that pediatric palliative care is recognized as ethically mandatory."

The $15,000 awards that Dr. Nageswaran and Dr. Friedrichsdorf received were given by the Hastings Center, a bioethics research institute based in Garrison, N.Y., in partnership with the Cunniff-Dixon Foundation, a foundation that focuses on the doctor-patient relationship near the end of life.

Pediatric Palliative Care Training

In terms of education, pediatric palliative care might be where pediatric subspecialties such as pulmonary care or neonatology were 25 years ago, Dr. Friedrichsdorf said, with an initial cadre of trained physicians having emerged.

In 2008, 47 physicians were certified in Hospice and Palliative Medicine (HPM) by the American Board of Pediatrics after taking the first American Board of Medical Specialties–recognized examination for the subspecialty. In total, 1,274 physicians were certified by various boards in the new subspecialty.

The American Board of Medical Specialties (ABMS) approved the creation of HPM as a subspecialty of 10 participating boards in 2006. Prior to 2006, board certification in hospice and palliative medicine was administered by the American Board of Hospice and Palliative Medicine but not recognized by the ABMS.

Other pediatricians have taken courses and attended educational retreats through organizations such as the Initiative for Pediatric Palliative Care, Dr. Berlinger said.

Ideally, she and Dr. Friedrichsdorf say, both educational tracks – fellowships and educational opportunities for mid-career pediatricians – will grow.

Starting in 2013, physicians who want to sit for the HPM board exam will have to have completed an Accreditation Council for Graduate Medical Education-accredited fellowship – a change that should spur the development of more fellowship programs. Children’s Hospitals and Clinics of Minnesota, Dr. Friedrichsdorf’s hospital, houses one of a handful of fellowship programs in pediatric palliative care. It has applied for ACGME approval.

Dr. Friedrichsdorf is the principal investigator of a National Institutes of Health/National Cancer Institute study on the creation and implementation of a pediatric palliative care curriculum that is slated to be offered to physicians who are in the midst of their careers and not seeking subspecialty training.

"Many professionals working in children’s hospitals are likely to care for a dying child, and need to be comfortable and knowledgeable," said Dr. Friedrichsdorf, who completed a fellowship in pediatric pain and palliative care at the Children’s Hospital at Westmead, Australia, after finishing his pediatric residency in Germany.

Dr. Stefan J. Friedrichsdorf has a list of "myths" about pediatric palliative care that he presents during lectures. Among them: that the death of a child in the United States is a rare event, that pediatric palliative care is just for children with cancer, and that care starts when treatment stops.

In his lectures – and in his work every day at Children’s Hospitals and Clinics of Minnesota, Minneapolis – Dr. Friedrichsdorf debunks these myths.

Photo credit: WFUBMC Photography

In January, he was one of two pediatricians who won national awards from the Hastings Center and a partnering foundation for their contributions to the broader field of palliative care. He and pediatrician Dr. Savithri Nageswaran of Brenner Children’s Hospital at Wake Forest University Baptist Medical Center in Winston-Salem, N.C., joined two geriatricians and an internist in receiving the award.

The pain and palliative care program at Dr. Friedrichsdorf’s institution is a relatively long-standing program, but pediatric palliative care is a new subspecialty and is still a relatively new area of pediatric care and of palliative medicine – one for which delivery models and educational pathways are still evolving, and one for which reimbursement is poor and regulatory barriers are challenging.

"It’s truly interdisciplinary, in that people need to really go beyond what they’ve been trained for," said Dr. Friedrichsdorf, medical director of the department of pain medicine, palliative care & integrative medicine at Children’s. "I’m nothing without my team."

Pediatric palliative care has been defined and described by the World Health Organization, the Institute of Medicine, the American Academy of Pediatrics, and other bodies as individualized, integrative care that is provided for children with life-threatening conditions. The care starts at diagnosis, continues through the trajectory of the illness, and is directed at the underlying illness and at the physical, emotional, social, and spiritual needs of the child and family.

More than 15,000 children and teens die in the United States each year from life-limiting diseases – and less than a quarter of them have cancer, according to data cited by Dr. Friedrichsdorf. Neuromuscular or neurodegenerative disorders cause a significant proportion of those deaths, followed by congenital or genetic disorders, cardiovascular disorders, and metabolic disorders.

"The vast majority of these children do not have access to pediatric palliative care in this country," Dr. Friedrichsdorf said in an interview. Data show that these children are suffering needlessly from pain, breathlessness, nausea, and vomiting.

Praised by the awards committee for "innovative symptom management, compassion, and family-centered care," Dr. Friedrichsdorf said he and his team take "an extremely aggressive approach" to managing pain and distressing symptoms in children with either life-threatening or life-limiting conditions.

He believes strong pain medications are underused in children (and one of the "myths" he debunks is that increasing doses of opioids and/or benzodiazepines causes respiratory depression and quickens death), but also that pharmacology alone is insufficient.

His department employs both pharmacology and complementary therapies such as biofeedback, massage, hypnosis, acupuncture, and acupressure. Physicians and other staff are trained in such modalities. "It’s not one or the other. It’s using the whole breadth [of therapies] at the same moment," said Dr. Friedrichsdorf, who is trained in self-hypnosis.

"We want to promise each family, if your child is suffering from distressing symptoms like nausea, pain, or dyspnea, we can usually make these symptoms go away," he said. "Our goal is for children to live as long as possible, as well as possible."

In addition to physicians and nurses, the pain and palliative care team at Children’s includes social workers, psychologists, a physical therapist, a child-life specialist, massage therapists, and advanced practice nurses.

Each of these professionals can see patients as part of a hospital-based pain and palliative care "rounding team" in the department’s pain and palliative care clinic, or for patients in the Minneapolis/St. Paul area, in the home through the department’s home-based component. The team can be called upon by anyone – a doctor, a patient, a relative or friend – for a consultation, and its members meet regularly to discuss patients.

"My physical therapist may tell me, for instance, that I need to change [a patient’s] pain medications because she sees side effects," Dr. Friedrichsdorf said.

A pilot study of pediatric palliative care teams at eight children’s hospitals, to be published soon, found that professionals in the teams had a "clear idea of what the other professionals offered to the patient and family," said Nancy Berlinger, Ph.D., deputy director and research scholar at the Hastings Center, which conducted the study with researchers at Rush University, Chicago.

A chaplain knows, for instance, how the physician and nurse are addressing the patient’s medical needs, and the physician is aware that the chaplain is supporting the parents and, in some cases, the child, she said in an interview.

"Having shared goals of care and strong communication is also important so that everything doesn’t have to be explained every time a shift changes or a patient is transferred to a different setting," she said.

"Most of these pediatric palliative care teams are fairly newly established," she noted. "There was some pediatric palliative care before then, but not necessarily with a strong team approach."

Dr. Nageswaran, who led the establishment of the first pediatric palliative care program at her hospital in 2008, said she was struck by the amount of coordination needed to provide good palliative care and by the flexibility needed to design a good program.

She and her colleagues started the program as a consult service for children who were hospitalized with complicated, often life-limiting conditions. The service used a half-time nurse coordinator, a one-quarter full-time equivalent (FTE) clinician post to be shared by a handful of physicians for rotating on-call duty, and a 1% FTE post for a physician coordinator.

"Very soon, we realized that the biggest need was to facilitate collaboration between multiple providers and to ensure sufficient continuity of care as these children transition back and forth from the hospital to home," Dr. Nageswaran said in an interview. "We weren’t achieving this with the traditional consult model where we’d see patients in the hospital and leave recommendations for the primary medical team."

In a subsequent restructuring, physician time was consolidated into a one-third–time FTE coordinator post, which Dr. Nageswaran fills herself, and funding was obtained from the federal Maternal and Child Health Bureau to add another half-time nurse coordinator who could focus on making home visits and coordinating home-based care in one local county.

The flexibility to coordinate care outside the hospital is critical, Dr. Nageswaran said. One of the 235 children cared for under the palliative care program thus far was a child with a rare genetic disorder characterized by skeletal abnormalities, urologic abnormalities, and severe neurologic impairment and seizures.

"The family wanted end-of-life care to be delivered at home, but they didn’t want to forgo medical care," Dr. Nageswaran recalled. "We went step-by-step, aligning the family’s wishes with the care the child received. We worked with the primary care doctor, the subspecialists, the home health agency, and the parents to provide medical treatment, pain and symptom management, and other care at home."

Both she and Dr. Friedrichsdorf emphasized the value of open inquiry with parents, children and families.

"Each family is unique in how they perceive illness and how they make decisions about treatment and end-of-life care," said Dr. Nageswaran. "When we meet families, we meet them without a set agenda, and we make sure we don’t impose our structure."

Similarly, Dr. Friedrichsdorf said, "When I enter a room, the first thing I say is, ‘How can I help you?’ We start with that open question." At that point, he said, surveys or other structured tools can be used to help determine needs and care plans.

One of the thorns in the field of pediatric palliative care is the unavailability of hospice services for many children, given the prognostic uncertainty of most childhood life-threatening conditions and the desire for continued treatment. Currently, most families have to forgo home-health services in order to receive hospice services.

Some states have taken action; policy reform passed in California in 2006, for instance, makes it easier for parents to utilize the Medi-Cal hospice benefit for children. A section of the federal Patient Protection and Affordable Care Act, moreover, is expected to change the Medicaid system to allow children with life-limiting conditions to receive both hospice care and curative treatment.

Another problem is poor provider reimbursement. "Physician services are reimbursed, but not enough to account for the amount of time involved," said Dr. Nageswaran. "\"And the services of nurses and social workers, who are key to pediatric palliative care programs, are not reimbursed."

She jump-started her program with a grant from the Duke Endowment, a private foundation, but now relies primarily on financial support from the hospital. Dr. Friedrichsdorf estimates that his hospital is reimbursed for only about half of its costs, and says that it relies heavily on philanthropy to make up the difference.

Philanthropy recently benefited the pediatric palliative care program at Akron (Ohio) Children’s Hospital. With $1.2 million in donations from the Haslinger Family Foundation and other leadership gifts, the hospital has created an endowed chair for its services, which began in 2002.]

One goal in the meantime, said Dr. Berlinger, is to "influence the culture of health care so that pediatric palliative care is recognized as ethically mandatory."

The $15,000 awards that Dr. Nageswaran and Dr. Friedrichsdorf received were given by the Hastings Center, a bioethics research institute based in Garrison, N.Y., in partnership with the Cunniff-Dixon Foundation, a foundation that focuses on the doctor-patient relationship near the end of life.

Pediatric Palliative Care Training

In terms of education, pediatric palliative care might be where pediatric subspecialties such as pulmonary care or neonatology were 25 years ago, Dr. Friedrichsdorf said, with an initial cadre of trained physicians having emerged.

In 2008, 47 physicians were certified in Hospice and Palliative Medicine (HPM) by the American Board of Pediatrics after taking the first American Board of Medical Specialties–recognized examination for the subspecialty. In total, 1,274 physicians were certified by various boards in the new subspecialty.

The American Board of Medical Specialties (ABMS) approved the creation of HPM as a subspecialty of 10 participating boards in 2006. Prior to 2006, board certification in hospice and palliative medicine was administered by the American Board of Hospice and Palliative Medicine but not recognized by the ABMS.

Other pediatricians have taken courses and attended educational retreats through organizations such as the Initiative for Pediatric Palliative Care, Dr. Berlinger said.

Ideally, she and Dr. Friedrichsdorf say, both educational tracks – fellowships and educational opportunities for mid-career pediatricians – will grow.

Starting in 2013, physicians who want to sit for the HPM board exam will have to have completed an Accreditation Council for Graduate Medical Education-accredited fellowship – a change that should spur the development of more fellowship programs. Children’s Hospitals and Clinics of Minnesota, Dr. Friedrichsdorf’s hospital, houses one of a handful of fellowship programs in pediatric palliative care. It has applied for ACGME approval.

Dr. Friedrichsdorf is the principal investigator of a National Institutes of Health/National Cancer Institute study on the creation and implementation of a pediatric palliative care curriculum that is slated to be offered to physicians who are in the midst of their careers and not seeking subspecialty training.

"Many professionals working in children’s hospitals are likely to care for a dying child, and need to be comfortable and knowledgeable," said Dr. Friedrichsdorf, who completed a fellowship in pediatric pain and palliative care at the Children’s Hospital at Westmead, Australia, after finishing his pediatric residency in Germany.

VANCOUVER, B.C. - People with implanted cardioverter defibrillators should be given the option of having the devices deactivated when they enter hospice care, Dr. Bernard Lee told his audience at the annual meeting of the American Academy of Hospice and Palliative Care Medicine.

When avoidance of sudden death is no longer the goal, deactivation of the devices to prevent shocking patients as their hearts fail "is ethically the right thing to do," said Dr. Lee, associate chief medical officer of hospice and palliative care at the Metropolitan Jewish Health System in Brooklyn, N.Y.

Although the issue has gotten some attention in recent years, research has shown that fewer than half of implanted cardioverter defibrillators (ICDs) are deactivated in hospice patients, said Dr. Lee (Ann. Intern. Med. 2010;152:296-9).

"We are not really doing a good job," said Dr. Michael Mencias, also of Metropolitan Jewish Health System. Even if the patient is unconscious and can’t feel the painful jolts, his or her body will jerk with each shock, alarming family members and making them feel that they didn’t make the patient’s final hours as comfortable as possible.

Often, patients and families – sometimes even providers – don’t know that ICDs can be painlessly deactivated magnetically and that doing so may prevent havoc at the end of life. And not infrequently, families have the mistaken impression that deactivation equals euthanasia or physician-assisted suicide, said Dr. Lee and Dr. Mencias.

Pacing Function Left Active

Palliative care and hospice clinicians can do better, the speakers said. A position statement from the National Organization of Hospice and Palliative Care gives tips on how to handle the issue (www.nhpco.org/files/public/NHPCO_ICD_position_statement_May08.pdf). In short, the group recommends asking all patients or families at hospice admission (or as soon as possible) whether a defibrillator has been implanted.

The group says that a health professional should then explain the potential problems if an ICD is not deactivated, and that deactivation is not likely to hasten death. When a patient has decided whether to keep the device turned on, everyone on the medical team should be so informed, says the statement.

The ICD’s detection of ventricular tachycardia or fibrillation – the function that tells the device to fire – can be deactivated either by a manufacturer’s technician or (less permanently) by a medical professional who can secure a magnet over the device. Available from ICD makers, the magnets are strong and measure a few inches across. They deactivate the sensing function, but that function returns if the magnet is removed.

When a patient’s time is short, Dr. Lee said he tries to quickly pull together a family meeting to discuss deactivation. "In worst-case scenarios, it’s done over the phone with the hospice physician and the patient or health care surrogate," he added.

For hospice patients at home, a magnet can be left with the family, with instructions on how to tape it to the chest to stop body-jolting shocks. Home-visiting nurses in Dr. Lee’s organization carry magnets in their cars in case a patient who is dying at home needs one quickly.

The application of magnets to a patient’s chest, however, is "certainly not a long-term solution for somebody who’s not actively dying," Dr. Lee said. Especially for frail patients who have lost weight, a magnet taped to the chest is uncomfortable, he added.

Deactivation Hesitation

Dr. Lee said that his organization broaches the topic of deactivation within 5 days of a patient’s admission to hospice. If the person opts for deactivation, the device’s manufacturer is called.

Often patients will have lost the card that came with their ICD, said Dr. Lee, so it’s necessary to call the various manufacturers – typically Medtronics, Guidant/Boston Scientific, and St. Jude Medical – to find out what device the patient carries. The companies will have a record.

Technicians will make house calls, if necessary, to deactivate an ICD’s sensing function in the presence of a licensed medical professional, and they can return to reactivate it if the patient changes his or her mind.

Deactivation usually requires a hospice physician’s order, said Dr. Lee. "Most physicians in the community are not comfortable writing that order."

Technicians themselves may even hesitate to deactivate an ICD. "Some of them are uncomfortable, so they will hand you the laptop and say ‘here, click on deactivate.’ We end up doing it," Dr. Mencias said.

Dr. Lee and Dr. Mencias said they have no conflict of interest.

VANCOUVER, B.C. - People with implanted cardioverter defibrillators should be given the option of having the devices deactivated when they enter hospice care, Dr. Bernard Lee told his audience at the annual meeting of the American Academy of Hospice and Palliative Care Medicine.

When avoidance of sudden death is no longer the goal, deactivation of the devices to prevent shocking patients as their hearts fail "is ethically the right thing to do," said Dr. Lee, associate chief medical officer of hospice and palliative care at the Metropolitan Jewish Health System in Brooklyn, N.Y.

Although the issue has gotten some attention in recent years, research has shown that fewer than half of implanted cardioverter defibrillators (ICDs) are deactivated in hospice patients, said Dr. Lee (Ann. Intern. Med. 2010;152:296-9).

"We are not really doing a good job," said Dr. Michael Mencias, also of Metropolitan Jewish Health System. Even if the patient is unconscious and can’t feel the painful jolts, his or her body will jerk with each shock, alarming family members and making them feel that they didn’t make the patient’s final hours as comfortable as possible.

Often, patients and families – sometimes even providers – don’t know that ICDs can be painlessly deactivated magnetically and that doing so may prevent havoc at the end of life. And not infrequently, families have the mistaken impression that deactivation equals euthanasia or physician-assisted suicide, said Dr. Lee and Dr. Mencias.

Pacing Function Left Active

Palliative care and hospice clinicians can do better, the speakers said. A position statement from the National Organization of Hospice and Palliative Care gives tips on how to handle the issue (www.nhpco.org/files/public/NHPCO_ICD_position_statement_May08.pdf). In short, the group recommends asking all patients or families at hospice admission (or as soon as possible) whether a defibrillator has been implanted.

The group says that a health professional should then explain the potential problems if an ICD is not deactivated, and that deactivation is not likely to hasten death. When a patient has decided whether to keep the device turned on, everyone on the medical team should be so informed, says the statement.

The ICD’s detection of ventricular tachycardia or fibrillation – the function that tells the device to fire – can be deactivated either by a manufacturer’s technician or (less permanently) by a medical professional who can secure a magnet over the device. Available from ICD makers, the magnets are strong and measure a few inches across. They deactivate the sensing function, but that function returns if the magnet is removed.

When a patient’s time is short, Dr. Lee said he tries to quickly pull together a family meeting to discuss deactivation. "In worst-case scenarios, it’s done over the phone with the hospice physician and the patient or health care surrogate," he added.

For hospice patients at home, a magnet can be left with the family, with instructions on how to tape it to the chest to stop body-jolting shocks. Home-visiting nurses in Dr. Lee’s organization carry magnets in their cars in case a patient who is dying at home needs one quickly.

The application of magnets to a patient’s chest, however, is "certainly not a long-term solution for somebody who’s not actively dying," Dr. Lee said. Especially for frail patients who have lost weight, a magnet taped to the chest is uncomfortable, he added.

Deactivation Hesitation

Dr. Lee said that his organization broaches the topic of deactivation within 5 days of a patient’s admission to hospice. If the person opts for deactivation, the device’s manufacturer is called.

Often patients will have lost the card that came with their ICD, said Dr. Lee, so it’s necessary to call the various manufacturers – typically Medtronics, Guidant/Boston Scientific, and St. Jude Medical – to find out what device the patient carries. The companies will have a record.

Technicians will make house calls, if necessary, to deactivate an ICD’s sensing function in the presence of a licensed medical professional, and they can return to reactivate it if the patient changes his or her mind.

Deactivation usually requires a hospice physician’s order, said Dr. Lee. "Most physicians in the community are not comfortable writing that order."

Technicians themselves may even hesitate to deactivate an ICD. "Some of them are uncomfortable, so they will hand you the laptop and say ‘here, click on deactivate.’ We end up doing it," Dr. Mencias said.

Dr. Lee and Dr. Mencias said they have no conflict of interest.

VANCOUVER, B.C. - People with implanted cardioverter defibrillators should be given the option of having the devices deactivated when they enter hospice care, Dr. Bernard Lee told his audience at the annual meeting of the American Academy of Hospice and Palliative Care Medicine.

When avoidance of sudden death is no longer the goal, deactivation of the devices to prevent shocking patients as their hearts fail "is ethically the right thing to do," said Dr. Lee, associate chief medical officer of hospice and palliative care at the Metropolitan Jewish Health System in Brooklyn, N.Y.

Although the issue has gotten some attention in recent years, research has shown that fewer than half of implanted cardioverter defibrillators (ICDs) are deactivated in hospice patients, said Dr. Lee (Ann. Intern. Med. 2010;152:296-9).

"We are not really doing a good job," said Dr. Michael Mencias, also of Metropolitan Jewish Health System. Even if the patient is unconscious and can’t feel the painful jolts, his or her body will jerk with each shock, alarming family members and making them feel that they didn’t make the patient’s final hours as comfortable as possible.

Often, patients and families – sometimes even providers – don’t know that ICDs can be painlessly deactivated magnetically and that doing so may prevent havoc at the end of life. And not infrequently, families have the mistaken impression that deactivation equals euthanasia or physician-assisted suicide, said Dr. Lee and Dr. Mencias.

Pacing Function Left Active

Palliative care and hospice clinicians can do better, the speakers said. A position statement from the National Organization of Hospice and Palliative Care gives tips on how to handle the issue (www.nhpco.org/files/public/NHPCO_ICD_position_statement_May08.pdf). In short, the group recommends asking all patients or families at hospice admission (or as soon as possible) whether a defibrillator has been implanted.

The group says that a health professional should then explain the potential problems if an ICD is not deactivated, and that deactivation is not likely to hasten death. When a patient has decided whether to keep the device turned on, everyone on the medical team should be so informed, says the statement.

The ICD’s detection of ventricular tachycardia or fibrillation – the function that tells the device to fire – can be deactivated either by a manufacturer’s technician or (less permanently) by a medical professional who can secure a magnet over the device. Available from ICD makers, the magnets are strong and measure a few inches across. They deactivate the sensing function, but that function returns if the magnet is removed.

When a patient’s time is short, Dr. Lee said he tries to quickly pull together a family meeting to discuss deactivation. "In worst-case scenarios, it’s done over the phone with the hospice physician and the patient or health care surrogate," he added.

For hospice patients at home, a magnet can be left with the family, with instructions on how to tape it to the chest to stop body-jolting shocks. Home-visiting nurses in Dr. Lee’s organization carry magnets in their cars in case a patient who is dying at home needs one quickly.

The application of magnets to a patient’s chest, however, is "certainly not a long-term solution for somebody who’s not actively dying," Dr. Lee said. Especially for frail patients who have lost weight, a magnet taped to the chest is uncomfortable, he added.

Deactivation Hesitation

Dr. Lee said that his organization broaches the topic of deactivation within 5 days of a patient’s admission to hospice. If the person opts for deactivation, the device’s manufacturer is called.

Often patients will have lost the card that came with their ICD, said Dr. Lee, so it’s necessary to call the various manufacturers – typically Medtronics, Guidant/Boston Scientific, and St. Jude Medical – to find out what device the patient carries. The companies will have a record.

Technicians will make house calls, if necessary, to deactivate an ICD’s sensing function in the presence of a licensed medical professional, and they can return to reactivate it if the patient changes his or her mind.

Deactivation usually requires a hospice physician’s order, said Dr. Lee. "Most physicians in the community are not comfortable writing that order."

Technicians themselves may even hesitate to deactivate an ICD. "Some of them are uncomfortable, so they will hand you the laptop and say ‘here, click on deactivate.’ We end up doing it," Dr. Mencias said.

Dr. Lee and Dr. Mencias said they have no conflict of interest.

SAN DIEGO – Pain management alternatives to opioids continue to evolve, according to Joseph F. Dasta, M.Sc. (Pharm.).

New options include intravenous ibuprofen, approved in June 2009; nasal ketorolac, approved in May 2010; and intravenous acetaminophen, approved in November 2010.

Nonopioid alternatives are needed because data "suggest that opioids as well as untreated pain are associated with development of postoperative delirium," said Mr. Dasta, a health care consultant who is also a faculty member at the College of Pharmacy at the University of Texas, Austin.

Most of the available agents for pain management are short acting, "which can be good and bad," Mr. Dasta said at the annual congress of the Society of Critical Care Medicine. In addition, many of the currently approved agents for pain management require intravenous administration and may cause adverse drug reactions.

Intravenous diclofenac is currently being investigated as another possible therapy, Mr. Dasta said, as are the cyclo-oxygenase-2 selective inhibitors etoricoxib and parecoxib, and the nonsteroidal anti-inflammatory drug lornoxicam.

New studies of bupivacaine, an anesthetic drug that lasts for 6-10 hours, are also underway. "Several formulations are being developed whereby bupivacaine would be instilled into the surgical site, to the operative area, and last for several days," Mr. Dasta said. "Hopefully, we’ll see some of this technology come to market."

New guidelines from the Society of Critical Care Medicine on sedation analgesia and delirium are expected to be released later in 2011, Mr. Dasta said. Topics covered related to pain will include behavioral and physiologic measures of pain, procedural and nonprocedural pain, and the role of opioids, NMDA-receptor antagonists, and other nonopioids.

Mr. Dasta disclosed that he is a paid consultant for Cadence, Hospira, and Pacira Pharmaceuticals.

SAN DIEGO – Pain management alternatives to opioids continue to evolve, according to Joseph F. Dasta, M.Sc. (Pharm.).

New options include intravenous ibuprofen, approved in June 2009; nasal ketorolac, approved in May 2010; and intravenous acetaminophen, approved in November 2010.

Nonopioid alternatives are needed because data "suggest that opioids as well as untreated pain are associated with development of postoperative delirium," said Mr. Dasta, a health care consultant who is also a faculty member at the College of Pharmacy at the University of Texas, Austin.

Most of the available agents for pain management are short acting, "which can be good and bad," Mr. Dasta said at the annual congress of the Society of Critical Care Medicine. In addition, many of the currently approved agents for pain management require intravenous administration and may cause adverse drug reactions.

Intravenous diclofenac is currently being investigated as another possible therapy, Mr. Dasta said, as are the cyclo-oxygenase-2 selective inhibitors etoricoxib and parecoxib, and the nonsteroidal anti-inflammatory drug lornoxicam.

New studies of bupivacaine, an anesthetic drug that lasts for 6-10 hours, are also underway. "Several formulations are being developed whereby bupivacaine would be instilled into the surgical site, to the operative area, and last for several days," Mr. Dasta said. "Hopefully, we’ll see some of this technology come to market."

New guidelines from the Society of Critical Care Medicine on sedation analgesia and delirium are expected to be released later in 2011, Mr. Dasta said. Topics covered related to pain will include behavioral and physiologic measures of pain, procedural and nonprocedural pain, and the role of opioids, NMDA-receptor antagonists, and other nonopioids.

Mr. Dasta disclosed that he is a paid consultant for Cadence, Hospira, and Pacira Pharmaceuticals.

SAN DIEGO – Pain management alternatives to opioids continue to evolve, according to Joseph F. Dasta, M.Sc. (Pharm.).

New options include intravenous ibuprofen, approved in June 2009; nasal ketorolac, approved in May 2010; and intravenous acetaminophen, approved in November 2010.

Nonopioid alternatives are needed because data "suggest that opioids as well as untreated pain are associated with development of postoperative delirium," said Mr. Dasta, a health care consultant who is also a faculty member at the College of Pharmacy at the University of Texas, Austin.

Most of the available agents for pain management are short acting, "which can be good and bad," Mr. Dasta said at the annual congress of the Society of Critical Care Medicine. In addition, many of the currently approved agents for pain management require intravenous administration and may cause adverse drug reactions.

Intravenous diclofenac is currently being investigated as another possible therapy, Mr. Dasta said, as are the cyclo-oxygenase-2 selective inhibitors etoricoxib and parecoxib, and the nonsteroidal anti-inflammatory drug lornoxicam.

New studies of bupivacaine, an anesthetic drug that lasts for 6-10 hours, are also underway. "Several formulations are being developed whereby bupivacaine would be instilled into the surgical site, to the operative area, and last for several days," Mr. Dasta said. "Hopefully, we’ll see some of this technology come to market."

New guidelines from the Society of Critical Care Medicine on sedation analgesia and delirium are expected to be released later in 2011, Mr. Dasta said. Topics covered related to pain will include behavioral and physiologic measures of pain, procedural and nonprocedural pain, and the role of opioids, NMDA-receptor antagonists, and other nonopioids.

Mr. Dasta disclosed that he is a paid consultant for Cadence, Hospira, and Pacira Pharmaceuticals.

SAN DIEGO – The development of hospital-acquired pressure ulcers may be unavoidable in patients who present with respiratory and hemodynamic medical problems that impede optimal oxygenation to tissues, results from a study of more than 800 patients showed.

The findings challenge the position of the Centers for Medicaid and Medicare Services that pressure ulcers in this setting are a so-called "never event," Margaret Mullen-Fortino, R.N., said at the annual congress of the Society of Critical Care Medicine.

"They are categorized as a never event because it’s believed that these are reasonably preventable through the application of evidence-based guidelines," said Ms. Mullen-Fortino, operations director of the surgical/trauma ICU at the Hospital of the University of Pennsylvania, Philadelphia. "The evidence-based guidelines include the acronym SKIN, with the S standing for surface selection such as low-air-pressure mattresses. The K stands for keep turning patients, the I stands for incontinence management, and the N stands for nutrition – making sure that patients are adequately nourished with enough protein."

However, she continued, "There is a large population of practitioners who believe that pressure ulcers are not a never event, that there are comorbidities that increase the chances of patients developing pressure ulcers. Much like a patient experiences a myocardial infarction because blood does not get to the heart muscle, we believe that pressure ulcers develop because adequate blood supply does not get to the skin, which is the largest organ in the body. Our hypothesis is that there is an association between the severity of illness and the development of pressure ulcers."

To test this hypothesis, Ms. Mullen-Fortino and her associates conducted a prospective cohort study of 824 patients who were admitted to the 20-bed surgical/trauma ICU at the Hospital of the University of Pennsylvania and to the 20-bed medical ICU at the Christ Hospital, Cincinnati, between Dec. 15, 2009, and Dec. 12, 2010. Variables assessed included age, length of stay, APACHE score, Braden score, readmission, and use of mechanical ventilation and vasopressors.

Ms. Mullen-Fortino reported that of the 824 patients studied, 221 (26.8%) developed pressure ulcers. Of these patients, 144 (65.1%) were ventilated and 67 (30.3%) required vasopressor support.

Among the entire study population, the median APACHE score was 74, with a range of 26-153. The median length of stay was 2 days, with a range of 1-91 days; the median Braden score was 14, with a range of 7-20; and the median patient age was 63 years.

All of the variables studied had a statistically significant association with the development of pressure ulcers with the exception of the use of vasopressors, "which was a surprise," Ms. Mullen-Fortino said.

She and her associates then performed logistic regression analysis that was limited to ICU length of stay, APACHE score, use of mechanical ventilation, and use of vasopressors. The Braden score was excluded "because that’s a predictive model for skin integrity, not really for severity of illness," she explained. In this analysis, only use of mechanical ventilation and vasopressors were significantly associated with the development of pressure ulcers (odds ratios of 4.55 and 2.17, respectively).

Next, the researchers intend to prospectively examine the cohort using the Sequential Organ Failure Assessment, which quantifies the severity of the patient’s illness based on the degree of organ dysfunction serially over time, "as opposed to the APACHE score, which provides you severity of illness on admission," Ms. Mullen-Fortino said. "We’re hoping to see if the progression of the severity of illness correlates with the development of pressure ulcers. The compilation of this evidence will hopefully serve to inform future policy."

In 2007, she said, more than 250,000 hospitalized patients were reported to have stage 3 and 4 pressure ulcers. The cost of treatment is about $43,000 per pressure ulcer, and the condition demands "a tremendous amount of nursing resources and time," she said.

Ms. Mullen-Fortino said that she had no relevant financial conflicts to disclose.

SAN DIEGO – The development of hospital-acquired pressure ulcers may be unavoidable in patients who present with respiratory and hemodynamic medical problems that impede optimal oxygenation to tissues, results from a study of more than 800 patients showed.

The findings challenge the position of the Centers for Medicaid and Medicare Services that pressure ulcers in this setting are a so-called "never event," Margaret Mullen-Fortino, R.N., said at the annual congress of the Society of Critical Care Medicine.

"They are categorized as a never event because it’s believed that these are reasonably preventable through the application of evidence-based guidelines," said Ms. Mullen-Fortino, operations director of the surgical/trauma ICU at the Hospital of the University of Pennsylvania, Philadelphia. "The evidence-based guidelines include the acronym SKIN, with the S standing for surface selection such as low-air-pressure mattresses. The K stands for keep turning patients, the I stands for incontinence management, and the N stands for nutrition – making sure that patients are adequately nourished with enough protein."

However, she continued, "There is a large population of practitioners who believe that pressure ulcers are not a never event, that there are comorbidities that increase the chances of patients developing pressure ulcers. Much like a patient experiences a myocardial infarction because blood does not get to the heart muscle, we believe that pressure ulcers develop because adequate blood supply does not get to the skin, which is the largest organ in the body. Our hypothesis is that there is an association between the severity of illness and the development of pressure ulcers."

To test this hypothesis, Ms. Mullen-Fortino and her associates conducted a prospective cohort study of 824 patients who were admitted to the 20-bed surgical/trauma ICU at the Hospital of the University of Pennsylvania and to the 20-bed medical ICU at the Christ Hospital, Cincinnati, between Dec. 15, 2009, and Dec. 12, 2010. Variables assessed included age, length of stay, APACHE score, Braden score, readmission, and use of mechanical ventilation and vasopressors.

Ms. Mullen-Fortino reported that of the 824 patients studied, 221 (26.8%) developed pressure ulcers. Of these patients, 144 (65.1%) were ventilated and 67 (30.3%) required vasopressor support.

Among the entire study population, the median APACHE score was 74, with a range of 26-153. The median length of stay was 2 days, with a range of 1-91 days; the median Braden score was 14, with a range of 7-20; and the median patient age was 63 years.

All of the variables studied had a statistically significant association with the development of pressure ulcers with the exception of the use of vasopressors, "which was a surprise," Ms. Mullen-Fortino said.

She and her associates then performed logistic regression analysis that was limited to ICU length of stay, APACHE score, use of mechanical ventilation, and use of vasopressors. The Braden score was excluded "because that’s a predictive model for skin integrity, not really for severity of illness," she explained. In this analysis, only use of mechanical ventilation and vasopressors were significantly associated with the development of pressure ulcers (odds ratios of 4.55 and 2.17, respectively).

Next, the researchers intend to prospectively examine the cohort using the Sequential Organ Failure Assessment, which quantifies the severity of the patient’s illness based on the degree of organ dysfunction serially over time, "as opposed to the APACHE score, which provides you severity of illness on admission," Ms. Mullen-Fortino said. "We’re hoping to see if the progression of the severity of illness correlates with the development of pressure ulcers. The compilation of this evidence will hopefully serve to inform future policy."

In 2007, she said, more than 250,000 hospitalized patients were reported to have stage 3 and 4 pressure ulcers. The cost of treatment is about $43,000 per pressure ulcer, and the condition demands "a tremendous amount of nursing resources and time," she said.

Ms. Mullen-Fortino said that she had no relevant financial conflicts to disclose.

SAN DIEGO – The development of hospital-acquired pressure ulcers may be unavoidable in patients who present with respiratory and hemodynamic medical problems that impede optimal oxygenation to tissues, results from a study of more than 800 patients showed.

The findings challenge the position of the Centers for Medicaid and Medicare Services that pressure ulcers in this setting are a so-called "never event," Margaret Mullen-Fortino, R.N., said at the annual congress of the Society of Critical Care Medicine.

"They are categorized as a never event because it’s believed that these are reasonably preventable through the application of evidence-based guidelines," said Ms. Mullen-Fortino, operations director of the surgical/trauma ICU at the Hospital of the University of Pennsylvania, Philadelphia. "The evidence-based guidelines include the acronym SKIN, with the S standing for surface selection such as low-air-pressure mattresses. The K stands for keep turning patients, the I stands for incontinence management, and the N stands for nutrition – making sure that patients are adequately nourished with enough protein."

However, she continued, "There is a large population of practitioners who believe that pressure ulcers are not a never event, that there are comorbidities that increase the chances of patients developing pressure ulcers. Much like a patient experiences a myocardial infarction because blood does not get to the heart muscle, we believe that pressure ulcers develop because adequate blood supply does not get to the skin, which is the largest organ in the body. Our hypothesis is that there is an association between the severity of illness and the development of pressure ulcers."

To test this hypothesis, Ms. Mullen-Fortino and her associates conducted a prospective cohort study of 824 patients who were admitted to the 20-bed surgical/trauma ICU at the Hospital of the University of Pennsylvania and to the 20-bed medical ICU at the Christ Hospital, Cincinnati, between Dec. 15, 2009, and Dec. 12, 2010. Variables assessed included age, length of stay, APACHE score, Braden score, readmission, and use of mechanical ventilation and vasopressors.

Ms. Mullen-Fortino reported that of the 824 patients studied, 221 (26.8%) developed pressure ulcers. Of these patients, 144 (65.1%) were ventilated and 67 (30.3%) required vasopressor support.

Among the entire study population, the median APACHE score was 74, with a range of 26-153. The median length of stay was 2 days, with a range of 1-91 days; the median Braden score was 14, with a range of 7-20; and the median patient age was 63 years.

All of the variables studied had a statistically significant association with the development of pressure ulcers with the exception of the use of vasopressors, "which was a surprise," Ms. Mullen-Fortino said.

She and her associates then performed logistic regression analysis that was limited to ICU length of stay, APACHE score, use of mechanical ventilation, and use of vasopressors. The Braden score was excluded "because that’s a predictive model for skin integrity, not really for severity of illness," she explained. In this analysis, only use of mechanical ventilation and vasopressors were significantly associated with the development of pressure ulcers (odds ratios of 4.55 and 2.17, respectively).

Next, the researchers intend to prospectively examine the cohort using the Sequential Organ Failure Assessment, which quantifies the severity of the patient’s illness based on the degree of organ dysfunction serially over time, "as opposed to the APACHE score, which provides you severity of illness on admission," Ms. Mullen-Fortino said. "We’re hoping to see if the progression of the severity of illness correlates with the development of pressure ulcers. The compilation of this evidence will hopefully serve to inform future policy."

In 2007, she said, more than 250,000 hospitalized patients were reported to have stage 3 and 4 pressure ulcers. The cost of treatment is about $43,000 per pressure ulcer, and the condition demands "a tremendous amount of nursing resources and time," she said.

Ms. Mullen-Fortino said that she had no relevant financial conflicts to disclose.

The Food and Drug Administration’s approval of immediate-release Abstral (fentanyl) transmucosal tablets provides a new option for managing breakthrough pain for adults with cancer.

Approved on Jan. 7, the drug is indicated for the management of breakthrough pain in patients aged 18 years and older with cancer, who already use around-the-clock opioid pain medication and who need and are able to safely use high doses of an additional opioid medicine.

Breakthrough pain is defined as pain that comes on suddenly for short periods of time and is not alleviated by a patient’s usual pain management plan. These patients should be considered opioid tolerant because of their current opioid medication use, according to a news release from the agency.

Immediate-release transmucosal medications, such as Abstral, are administered on the soft surfaces of the mouth, the nasal passages or throat where they dissolve and are absorbed.

The approval comes with the condition that the drug only be made available through through a Risk Evaluation and Mitigation Strategy (REMS) program, in order to minimize the risk of misuse, abuse, addiction, and overdose. Fentanyl is a schedule II opioid under the Controlled Substances Act.

The program requires pharmacies, distributors, and health care professionals who prescribe to outpatients to enroll in the program in order to prescribe, dispense, and distribute this product.

Common adverse reactions include nausea, constipation, drowsiness, and headache. Serious adverse events, including deaths, have been reported in patients with other immediate-release transmucosal fentanyl products, according to the FDA. The deaths occurred as a result of improper patient selection and/or improper dosing.

Health care professionals are encouraged to report adverse side effects or medication errors from the use of this drug to the FDA’s MedWatch Adverse Event Reporting program or by calling 800-332-1088.

Abstral is manufacturedby ProStrakan Inc.

The Food and Drug Administration’s approval of immediate-release Abstral (fentanyl) transmucosal tablets provides a new option for managing breakthrough pain for adults with cancer.

Approved on Jan. 7, the drug is indicated for the management of breakthrough pain in patients aged 18 years and older with cancer, who already use around-the-clock opioid pain medication and who need and are able to safely use high doses of an additional opioid medicine.

Breakthrough pain is defined as pain that comes on suddenly for short periods of time and is not alleviated by a patient’s usual pain management plan. These patients should be considered opioid tolerant because of their current opioid medication use, according to a news release from the agency.

Immediate-release transmucosal medications, such as Abstral, are administered on the soft surfaces of the mouth, the nasal passages or throat where they dissolve and are absorbed.

The approval comes with the condition that the drug only be made available through through a Risk Evaluation and Mitigation Strategy (REMS) program, in order to minimize the risk of misuse, abuse, addiction, and overdose. Fentanyl is a schedule II opioid under the Controlled Substances Act.

The program requires pharmacies, distributors, and health care professionals who prescribe to outpatients to enroll in the program in order to prescribe, dispense, and distribute this product.

Common adverse reactions include nausea, constipation, drowsiness, and headache. Serious adverse events, including deaths, have been reported in patients with other immediate-release transmucosal fentanyl products, according to the FDA. The deaths occurred as a result of improper patient selection and/or improper dosing.

Health care professionals are encouraged to report adverse side effects or medication errors from the use of this drug to the FDA’s MedWatch Adverse Event Reporting program or by calling 800-332-1088.

Abstral is manufacturedby ProStrakan Inc.

The Food and Drug Administration’s approval of immediate-release Abstral (fentanyl) transmucosal tablets provides a new option for managing breakthrough pain for adults with cancer.

Approved on Jan. 7, the drug is indicated for the management of breakthrough pain in patients aged 18 years and older with cancer, who already use around-the-clock opioid pain medication and who need and are able to safely use high doses of an additional opioid medicine.

Breakthrough pain is defined as pain that comes on suddenly for short periods of time and is not alleviated by a patient’s usual pain management plan. These patients should be considered opioid tolerant because of their current opioid medication use, according to a news release from the agency.

Immediate-release transmucosal medications, such as Abstral, are administered on the soft surfaces of the mouth, the nasal passages or throat where they dissolve and are absorbed.

The approval comes with the condition that the drug only be made available through through a Risk Evaluation and Mitigation Strategy (REMS) program, in order to minimize the risk of misuse, abuse, addiction, and overdose. Fentanyl is a schedule II opioid under the Controlled Substances Act.

The program requires pharmacies, distributors, and health care professionals who prescribe to outpatients to enroll in the program in order to prescribe, dispense, and distribute this product.

Common adverse reactions include nausea, constipation, drowsiness, and headache. Serious adverse events, including deaths, have been reported in patients with other immediate-release transmucosal fentanyl products, according to the FDA. The deaths occurred as a result of improper patient selection and/or improper dosing.

Health care professionals are encouraged to report adverse side effects or medication errors from the use of this drug to the FDA’s MedWatch Adverse Event Reporting program or by calling 800-332-1088.

Abstral is manufacturedby ProStrakan Inc.