Hospice & Palliative Medicine

You know that you’ve been at a valuable meeting when you can use on Monday morning the "take-home messages" you gathered over the weekend.

 The annual conference of the American Psychosocial Oncology Society was just such a meeting, filled with valuable data and perspective on distress screening tools, survivorship guidance, and ways to integrate psychosocial care comfortably into the evolving medical model of cancer care.

But the lessons I put into play before I unpacked my briefcase were gleaned in a dynamic workshop led by Dr. John D. Wynn of the Swedish Cancer Institute in Seattle.

A psychiatrist, Dr. Wynn has long been regarded as an expert on the uneasy intersection of cancer and Axis II personality traits and disorders, having written the chapter on this topic in Dr. Jimmie Holland’s classic textbook Psycho-Oncology (New York: Oxford University Press, 2010).

Sorting through Axis II diagnoses, he frames Clusters A, B, and C as "weird," "wild," and "worried." Along the way, he challenged the accepted dogma that personality disorders are easily defined, enduring, and inflexible when research calls into question all of these notions.

To be sure, there are individuals whose ways of dealing with others and the world fall far outside the reassuring central band of "average." But labels – formal or informal –may be overused and unhelpful, he argued.

For example, "uncooperative" and "difficult" aren’t assigned codes in the DSM-IV or ICD-9, but they’re quasi-diagnoses used with great frequency in rounds, case conferences, and at the nursing station.

Dr. Wynn drove home the point that such terms are relative. Members of the treatment team are likely viewed as "difficult" by the very same patients who elicit the label from us. Consider the context, he counseled.

"Medical care encourages and reinforces dependency, passivity, and attention seeking," he explained.

While most people in society are able to adapt to the highly structured culture of Western medicine, grinning and bearing it in their new costumes (cotton gowns) and subservient patient roles, others may simply not possess that flexibility, particularly in the context of extreme fear, embarrassment, or mistrust.

Dr. Wynn argues that the people who are often diagnosed with personality disorders really have "adaptive failure" – a term he wishes would have made it into DSM-5. They have both a poor sense of self and a poor capacity for interpersonal functioning.

And this is a painful combination when it comes to coping with a life-threatening diagnosis in a strange new world, where amicability, conformity, and allegiance to the treatment plan are highly prized.

So how does all this play out in the clinic?

Dr. Wynn’s advice is to use our own reactions to such patients as diagnostic cues, tapping into our professionalism to guide our responses.

See each patient as unique and uniquely challenged by the circumstances of his or her disease, and respond based on what you see and feel, he advised.

Take extra time to listen to patients who fail to follow through with treatment, appear needy or overly-entitled, and even those who may "frighten or repel us."

Do fear, shame, or confusion lie at the heart of such behavior?

Could respect, collaboration, and limit setting put in check the most troubling interactions with such patients?

With Dr. Wynn’s conceptualization fresh in my mind, I was inspired to step back and put into context my own reactions to patients I find difficult.

I found myself more patient, more understanding, and more curious about the underpinnings of behaviors that play havoc with the treatment schedule and have the potential to bring out the worst in us all.

What particularly helps for me is to remember (and remind colleagues) that our shared enemy is cancer, not the patient. By seeing the patient as our ally in that fight, we are motivated to compassionately demystify our traditions and find creative bridges to connection with all types of people who need our care.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

You know that you’ve been at a valuable meeting when you can use on Monday morning the "take-home messages" you gathered over the weekend.

 The annual conference of the American Psychosocial Oncology Society was just such a meeting, filled with valuable data and perspective on distress screening tools, survivorship guidance, and ways to integrate psychosocial care comfortably into the evolving medical model of cancer care.

But the lessons I put into play before I unpacked my briefcase were gleaned in a dynamic workshop led by Dr. John D. Wynn of the Swedish Cancer Institute in Seattle.

A psychiatrist, Dr. Wynn has long been regarded as an expert on the uneasy intersection of cancer and Axis II personality traits and disorders, having written the chapter on this topic in Dr. Jimmie Holland’s classic textbook Psycho-Oncology (New York: Oxford University Press, 2010).

Sorting through Axis II diagnoses, he frames Clusters A, B, and C as "weird," "wild," and "worried." Along the way, he challenged the accepted dogma that personality disorders are easily defined, enduring, and inflexible when research calls into question all of these notions.

To be sure, there are individuals whose ways of dealing with others and the world fall far outside the reassuring central band of "average." But labels – formal or informal –may be overused and unhelpful, he argued.

For example, "uncooperative" and "difficult" aren’t assigned codes in the DSM-IV or ICD-9, but they’re quasi-diagnoses used with great frequency in rounds, case conferences, and at the nursing station.

Dr. Wynn drove home the point that such terms are relative. Members of the treatment team are likely viewed as "difficult" by the very same patients who elicit the label from us. Consider the context, he counseled.

"Medical care encourages and reinforces dependency, passivity, and attention seeking," he explained.

While most people in society are able to adapt to the highly structured culture of Western medicine, grinning and bearing it in their new costumes (cotton gowns) and subservient patient roles, others may simply not possess that flexibility, particularly in the context of extreme fear, embarrassment, or mistrust.

Dr. Wynn argues that the people who are often diagnosed with personality disorders really have "adaptive failure" – a term he wishes would have made it into DSM-5. They have both a poor sense of self and a poor capacity for interpersonal functioning.

And this is a painful combination when it comes to coping with a life-threatening diagnosis in a strange new world, where amicability, conformity, and allegiance to the treatment plan are highly prized.

So how does all this play out in the clinic?

Dr. Wynn’s advice is to use our own reactions to such patients as diagnostic cues, tapping into our professionalism to guide our responses.

See each patient as unique and uniquely challenged by the circumstances of his or her disease, and respond based on what you see and feel, he advised.

Take extra time to listen to patients who fail to follow through with treatment, appear needy or overly-entitled, and even those who may "frighten or repel us."

Do fear, shame, or confusion lie at the heart of such behavior?

Could respect, collaboration, and limit setting put in check the most troubling interactions with such patients?

With Dr. Wynn’s conceptualization fresh in my mind, I was inspired to step back and put into context my own reactions to patients I find difficult.

I found myself more patient, more understanding, and more curious about the underpinnings of behaviors that play havoc with the treatment schedule and have the potential to bring out the worst in us all.

What particularly helps for me is to remember (and remind colleagues) that our shared enemy is cancer, not the patient. By seeing the patient as our ally in that fight, we are motivated to compassionately demystify our traditions and find creative bridges to connection with all types of people who need our care.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

You know that you’ve been at a valuable meeting when you can use on Monday morning the "take-home messages" you gathered over the weekend.

 The annual conference of the American Psychosocial Oncology Society was just such a meeting, filled with valuable data and perspective on distress screening tools, survivorship guidance, and ways to integrate psychosocial care comfortably into the evolving medical model of cancer care.

But the lessons I put into play before I unpacked my briefcase were gleaned in a dynamic workshop led by Dr. John D. Wynn of the Swedish Cancer Institute in Seattle.

A psychiatrist, Dr. Wynn has long been regarded as an expert on the uneasy intersection of cancer and Axis II personality traits and disorders, having written the chapter on this topic in Dr. Jimmie Holland’s classic textbook Psycho-Oncology (New York: Oxford University Press, 2010).

Sorting through Axis II diagnoses, he frames Clusters A, B, and C as "weird," "wild," and "worried." Along the way, he challenged the accepted dogma that personality disorders are easily defined, enduring, and inflexible when research calls into question all of these notions.

To be sure, there are individuals whose ways of dealing with others and the world fall far outside the reassuring central band of "average." But labels – formal or informal –may be overused and unhelpful, he argued.

For example, "uncooperative" and "difficult" aren’t assigned codes in the DSM-IV or ICD-9, but they’re quasi-diagnoses used with great frequency in rounds, case conferences, and at the nursing station.

Dr. Wynn drove home the point that such terms are relative. Members of the treatment team are likely viewed as "difficult" by the very same patients who elicit the label from us. Consider the context, he counseled.

"Medical care encourages and reinforces dependency, passivity, and attention seeking," he explained.

While most people in society are able to adapt to the highly structured culture of Western medicine, grinning and bearing it in their new costumes (cotton gowns) and subservient patient roles, others may simply not possess that flexibility, particularly in the context of extreme fear, embarrassment, or mistrust.

Dr. Wynn argues that the people who are often diagnosed with personality disorders really have "adaptive failure" – a term he wishes would have made it into DSM-5. They have both a poor sense of self and a poor capacity for interpersonal functioning.

And this is a painful combination when it comes to coping with a life-threatening diagnosis in a strange new world, where amicability, conformity, and allegiance to the treatment plan are highly prized.

So how does all this play out in the clinic?

Dr. Wynn’s advice is to use our own reactions to such patients as diagnostic cues, tapping into our professionalism to guide our responses.

See each patient as unique and uniquely challenged by the circumstances of his or her disease, and respond based on what you see and feel, he advised.

Take extra time to listen to patients who fail to follow through with treatment, appear needy or overly-entitled, and even those who may "frighten or repel us."

Do fear, shame, or confusion lie at the heart of such behavior?

Could respect, collaboration, and limit setting put in check the most troubling interactions with such patients?

With Dr. Wynn’s conceptualization fresh in my mind, I was inspired to step back and put into context my own reactions to patients I find difficult.

I found myself more patient, more understanding, and more curious about the underpinnings of behaviors that play havoc with the treatment schedule and have the potential to bring out the worst in us all.

What particularly helps for me is to remember (and remind colleagues) that our shared enemy is cancer, not the patient. By seeing the patient as our ally in that fight, we are motivated to compassionately demystify our traditions and find creative bridges to connection with all types of people who need our care.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

LAS VEGAS – Hypoactive delirium is common in terminally ill patients; just as disconcerting as hyperactive, agitated delirium; and just as likely to respond to antipsychotics, according to Dr. William Breitbart, chief of the psychiatry service at Memorial Sloan-Kettering Cancer Center, New York.

Outwardly, patients with hypoactive delirium appear less distressed than do patients with hyperactive delirium, yet they report just as much distress and about half of them report delusions and hallucinations.

About 80% of terminal cancer patients become delirious in their final weeks of life, and about half of them experience hypoactive delirium in association with opioid analgesia, metabolic derangements, and organ failure.

Addressing hypoactive delirium requires diplomacy, especially in patients with hallucinations, he said. Dying patients often see dead relatives – parents, for instance, who come to accompany them to the afterlife. "For me to barrel into the room and say those are psychotic symptoms or describe these experiences as absurd would be insensitive; they are profoundly meaningful experiences to patients and families," Dr. Breitbart said at the annual psychopharmacology update held by the Nevada Psychiatric Association. Instead, he acknowledges the significance of the visions, but notes that they can rapidly change to very frightening visions. He then discusses the use of medications to avert this possible progression.

Antipsychotics help to reduce agitation, psychotic symptoms, and more subtle problems such as disorientation in these patients, Dr. Breitbart said at the conference. When the underlying metabolic problems can be addressed in cancer patients, the drugs can be used for a few weeks and this sort of short-term use is not associated with increased mortality, he said. The ultimate goal of treatment is an "upright patient who is awake, alert, and conversant with family and staff."

In the patient with imminent terminal illness, however, sometimes "the best you can achieve (with antipsychotics) is a sedated patient," he said.

Low-dose haloperidol is generally preferred; atypical antipsychotics have not proven any more effective or safer. Close monitoring for side effects – particularly prolonged QTc intervals and extrapyramidal symptoms – is essential (J. Clin. Oncol. 2012;30:1206-14).

Haloperidol and chlorpromazine work equally well in both types of delirium. Dr. Breitbart said he’ll sometimes add chlorpromazine when agitation fails to respond to haloperidol alone.

Aripiprazole may work a bit better in hypoactive patients; olanzapine may be preferred in hyperactive patients. Risperidone is another option.

"We tend not to use benzodiazepines because they worsen delirium, but if your goal is to sedate a patient, then benzodiazepines are helpful. We often use haloperidol in combination with a drug like lorazepam to help get an agitated patient under better control," he said.

Dr. Breitbart said he has no relevant financial relationships with commercial interests.

[email protected]

LAS VEGAS – Hypoactive delirium is common in terminally ill patients; just as disconcerting as hyperactive, agitated delirium; and just as likely to respond to antipsychotics, according to Dr. William Breitbart, chief of the psychiatry service at Memorial Sloan-Kettering Cancer Center, New York.

Outwardly, patients with hypoactive delirium appear less distressed than do patients with hyperactive delirium, yet they report just as much distress and about half of them report delusions and hallucinations.

About 80% of terminal cancer patients become delirious in their final weeks of life, and about half of them experience hypoactive delirium in association with opioid analgesia, metabolic derangements, and organ failure.

Addressing hypoactive delirium requires diplomacy, especially in patients with hallucinations, he said. Dying patients often see dead relatives – parents, for instance, who come to accompany them to the afterlife. "For me to barrel into the room and say those are psychotic symptoms or describe these experiences as absurd would be insensitive; they are profoundly meaningful experiences to patients and families," Dr. Breitbart said at the annual psychopharmacology update held by the Nevada Psychiatric Association. Instead, he acknowledges the significance of the visions, but notes that they can rapidly change to very frightening visions. He then discusses the use of medications to avert this possible progression.

Antipsychotics help to reduce agitation, psychotic symptoms, and more subtle problems such as disorientation in these patients, Dr. Breitbart said at the conference. When the underlying metabolic problems can be addressed in cancer patients, the drugs can be used for a few weeks and this sort of short-term use is not associated with increased mortality, he said. The ultimate goal of treatment is an "upright patient who is awake, alert, and conversant with family and staff."

In the patient with imminent terminal illness, however, sometimes "the best you can achieve (with antipsychotics) is a sedated patient," he said.

Low-dose haloperidol is generally preferred; atypical antipsychotics have not proven any more effective or safer. Close monitoring for side effects – particularly prolonged QTc intervals and extrapyramidal symptoms – is essential (J. Clin. Oncol. 2012;30:1206-14).

Haloperidol and chlorpromazine work equally well in both types of delirium. Dr. Breitbart said he’ll sometimes add chlorpromazine when agitation fails to respond to haloperidol alone.

Aripiprazole may work a bit better in hypoactive patients; olanzapine may be preferred in hyperactive patients. Risperidone is another option.

"We tend not to use benzodiazepines because they worsen delirium, but if your goal is to sedate a patient, then benzodiazepines are helpful. We often use haloperidol in combination with a drug like lorazepam to help get an agitated patient under better control," he said.

Dr. Breitbart said he has no relevant financial relationships with commercial interests.

[email protected]

LAS VEGAS – Hypoactive delirium is common in terminally ill patients; just as disconcerting as hyperactive, agitated delirium; and just as likely to respond to antipsychotics, according to Dr. William Breitbart, chief of the psychiatry service at Memorial Sloan-Kettering Cancer Center, New York.

Outwardly, patients with hypoactive delirium appear less distressed than do patients with hyperactive delirium, yet they report just as much distress and about half of them report delusions and hallucinations.

About 80% of terminal cancer patients become delirious in their final weeks of life, and about half of them experience hypoactive delirium in association with opioid analgesia, metabolic derangements, and organ failure.

Addressing hypoactive delirium requires diplomacy, especially in patients with hallucinations, he said. Dying patients often see dead relatives – parents, for instance, who come to accompany them to the afterlife. "For me to barrel into the room and say those are psychotic symptoms or describe these experiences as absurd would be insensitive; they are profoundly meaningful experiences to patients and families," Dr. Breitbart said at the annual psychopharmacology update held by the Nevada Psychiatric Association. Instead, he acknowledges the significance of the visions, but notes that they can rapidly change to very frightening visions. He then discusses the use of medications to avert this possible progression.

Antipsychotics help to reduce agitation, psychotic symptoms, and more subtle problems such as disorientation in these patients, Dr. Breitbart said at the conference. When the underlying metabolic problems can be addressed in cancer patients, the drugs can be used for a few weeks and this sort of short-term use is not associated with increased mortality, he said. The ultimate goal of treatment is an "upright patient who is awake, alert, and conversant with family and staff."

In the patient with imminent terminal illness, however, sometimes "the best you can achieve (with antipsychotics) is a sedated patient," he said.

Low-dose haloperidol is generally preferred; atypical antipsychotics have not proven any more effective or safer. Close monitoring for side effects – particularly prolonged QTc intervals and extrapyramidal symptoms – is essential (J. Clin. Oncol. 2012;30:1206-14).

Haloperidol and chlorpromazine work equally well in both types of delirium. Dr. Breitbart said he’ll sometimes add chlorpromazine when agitation fails to respond to haloperidol alone.

Aripiprazole may work a bit better in hypoactive patients; olanzapine may be preferred in hyperactive patients. Risperidone is another option.

"We tend not to use benzodiazepines because they worsen delirium, but if your goal is to sedate a patient, then benzodiazepines are helpful. We often use haloperidol in combination with a drug like lorazepam to help get an agitated patient under better control," he said.

Dr. Breitbart said he has no relevant financial relationships with commercial interests.

[email protected]

LAS VEGAS – When it comes to treating depression in end-stage cancer patients, the side effects of psychotropics can prove almost as helpful as their primary indications.

"We tend to select drugs based on the side effects we want to utilize," said Dr. William S. Breitbart, chief of the Memorial Sloan-Kettering Cancer Center Psychiatry Service in New York.

For instance, sedating, constipating medicines such as tricyclics would be work well for a depressed patient with insomnia, diarrhea, and mouth sores. However, it would make sense to avoid those side effects in a patient with constipation or one who sleeps too much because of opioid pain management, he said.

Tricyclics also have some pain-fighting ability, and antidepressants in general help with dyspnea and can, along with neuroleptics, counter steroid side effects.

Drugs such as venlafaxine, mirtazapine, citalopram, and escitalopram are favored for terminally ill cancer patients, when possible, because they have little effect on the cytochrome P450 system, and so are unlikely to interfere with the blood levels of chemotherapeutic agents such as tamoxifen, Dr. Breitbart said at the Nevada Psychiatric Association’s Annual Psychopharmacology Update conference.

In addition, excitement in psychiatry about ketamine as an antidepressant has also been extended to patients in palliative care settings. However, Dr. Breitbart said, so far, there has not been enough controlled trials to support the use of ketamine with these terminal patients.

The side effects of other psychotropics are useful, too. Mirtazapine can help patients gain weight; olanzapine can do that, has analgesic properties, and helps with nausea and vomiting. Fitful sleep can be calmed by various agents with sedating properties.

Pain, metabolic abnormalities, anemia, adrenal insufficiency, hypogonadism, and chemotherapy agents themselves are among the factors that can contribute to depression in cancer patients. Patients with pancreatic cancer have higher rates of depression than do those with other intra-abdominal or retroperitoneal cancers, as well, perhaps because they have high levels of endogenous proinflammatory cytokines, which have been linked to depression.

About 60% of patients will respond to antidepressant therapy; individual and group psychotherapy, music and relaxation therapy, and social support help, too.

Psychostimulants help improve mood, cognition, and concentration, as well. "We occasionally use combinations of psychostimulants with [selective serotonin reuptake inhibitors] to jump-start the effect of the antidepressant agent." They also potentiate the analgesic effect of opioids and counteract their sedation, "so you can achieve analgesia at higher [opioid] doses" instead of limiting them because of sedation, Dr. Breitbart said.

Rather then suppressing appetite, psychostimulants give cancer patients a better sense of well-being and improve their appetite, which may help them gain a few pounds.

It’s a challenge to identify depression in advanced cancer, because fatigue, weight loss, and other effects of cancer and its treatment mimic depression. One solution is to increase the threshold for depression diagnoses, requiring a couple more associated symptoms instead of the usual four. Also, just the simple question, "Have you been depressed most of the time for the past 2 weeks" is a great screening tool for advanced cancer patients, he said.

Dr. Breitbart said he has no relevant commercial interests.

[email protected]

LAS VEGAS – When it comes to treating depression in end-stage cancer patients, the side effects of psychotropics can prove almost as helpful as their primary indications.

"We tend to select drugs based on the side effects we want to utilize," said Dr. William S. Breitbart, chief of the Memorial Sloan-Kettering Cancer Center Psychiatry Service in New York.

For instance, sedating, constipating medicines such as tricyclics would be work well for a depressed patient with insomnia, diarrhea, and mouth sores. However, it would make sense to avoid those side effects in a patient with constipation or one who sleeps too much because of opioid pain management, he said.

Tricyclics also have some pain-fighting ability, and antidepressants in general help with dyspnea and can, along with neuroleptics, counter steroid side effects.

Drugs such as venlafaxine, mirtazapine, citalopram, and escitalopram are favored for terminally ill cancer patients, when possible, because they have little effect on the cytochrome P450 system, and so are unlikely to interfere with the blood levels of chemotherapeutic agents such as tamoxifen, Dr. Breitbart said at the Nevada Psychiatric Association’s Annual Psychopharmacology Update conference.

In addition, excitement in psychiatry about ketamine as an antidepressant has also been extended to patients in palliative care settings. However, Dr. Breitbart said, so far, there has not been enough controlled trials to support the use of ketamine with these terminal patients.

The side effects of other psychotropics are useful, too. Mirtazapine can help patients gain weight; olanzapine can do that, has analgesic properties, and helps with nausea and vomiting. Fitful sleep can be calmed by various agents with sedating properties.

Pain, metabolic abnormalities, anemia, adrenal insufficiency, hypogonadism, and chemotherapy agents themselves are among the factors that can contribute to depression in cancer patients. Patients with pancreatic cancer have higher rates of depression than do those with other intra-abdominal or retroperitoneal cancers, as well, perhaps because they have high levels of endogenous proinflammatory cytokines, which have been linked to depression.

About 60% of patients will respond to antidepressant therapy; individual and group psychotherapy, music and relaxation therapy, and social support help, too.

Psychostimulants help improve mood, cognition, and concentration, as well. "We occasionally use combinations of psychostimulants with [selective serotonin reuptake inhibitors] to jump-start the effect of the antidepressant agent." They also potentiate the analgesic effect of opioids and counteract their sedation, "so you can achieve analgesia at higher [opioid] doses" instead of limiting them because of sedation, Dr. Breitbart said.

Rather then suppressing appetite, psychostimulants give cancer patients a better sense of well-being and improve their appetite, which may help them gain a few pounds.

It’s a challenge to identify depression in advanced cancer, because fatigue, weight loss, and other effects of cancer and its treatment mimic depression. One solution is to increase the threshold for depression diagnoses, requiring a couple more associated symptoms instead of the usual four. Also, just the simple question, "Have you been depressed most of the time for the past 2 weeks" is a great screening tool for advanced cancer patients, he said.

Dr. Breitbart said he has no relevant commercial interests.

[email protected]

LAS VEGAS – When it comes to treating depression in end-stage cancer patients, the side effects of psychotropics can prove almost as helpful as their primary indications.

"We tend to select drugs based on the side effects we want to utilize," said Dr. William S. Breitbart, chief of the Memorial Sloan-Kettering Cancer Center Psychiatry Service in New York.

For instance, sedating, constipating medicines such as tricyclics would be work well for a depressed patient with insomnia, diarrhea, and mouth sores. However, it would make sense to avoid those side effects in a patient with constipation or one who sleeps too much because of opioid pain management, he said.

Tricyclics also have some pain-fighting ability, and antidepressants in general help with dyspnea and can, along with neuroleptics, counter steroid side effects.

Drugs such as venlafaxine, mirtazapine, citalopram, and escitalopram are favored for terminally ill cancer patients, when possible, because they have little effect on the cytochrome P450 system, and so are unlikely to interfere with the blood levels of chemotherapeutic agents such as tamoxifen, Dr. Breitbart said at the Nevada Psychiatric Association’s Annual Psychopharmacology Update conference.

In addition, excitement in psychiatry about ketamine as an antidepressant has also been extended to patients in palliative care settings. However, Dr. Breitbart said, so far, there has not been enough controlled trials to support the use of ketamine with these terminal patients.

The side effects of other psychotropics are useful, too. Mirtazapine can help patients gain weight; olanzapine can do that, has analgesic properties, and helps with nausea and vomiting. Fitful sleep can be calmed by various agents with sedating properties.

Pain, metabolic abnormalities, anemia, adrenal insufficiency, hypogonadism, and chemotherapy agents themselves are among the factors that can contribute to depression in cancer patients. Patients with pancreatic cancer have higher rates of depression than do those with other intra-abdominal or retroperitoneal cancers, as well, perhaps because they have high levels of endogenous proinflammatory cytokines, which have been linked to depression.

About 60% of patients will respond to antidepressant therapy; individual and group psychotherapy, music and relaxation therapy, and social support help, too.

Psychostimulants help improve mood, cognition, and concentration, as well. "We occasionally use combinations of psychostimulants with [selective serotonin reuptake inhibitors] to jump-start the effect of the antidepressant agent." They also potentiate the analgesic effect of opioids and counteract their sedation, "so you can achieve analgesia at higher [opioid] doses" instead of limiting them because of sedation, Dr. Breitbart said.

Rather then suppressing appetite, psychostimulants give cancer patients a better sense of well-being and improve their appetite, which may help them gain a few pounds.

It’s a challenge to identify depression in advanced cancer, because fatigue, weight loss, and other effects of cancer and its treatment mimic depression. One solution is to increase the threshold for depression diagnoses, requiring a couple more associated symptoms instead of the usual four. Also, just the simple question, "Have you been depressed most of the time for the past 2 weeks" is a great screening tool for advanced cancer patients, he said.

Dr. Breitbart said he has no relevant commercial interests.

[email protected]

When a cancer patient from Menomonie, Wis., reached out to the American Cancer Society’s WhatNext online network seeking treatment reassurance, a ready-made support group jumped into action.

"Anyone familiar with 5-FU [5-fluorouracil], cetuximab (Erbitux), or carboplatin? Has anyone ever worn a pump?" asked Packerbacker. "New nodule revealed metastatic cancer. ... I had cisplatin in the past and tolerated it with minor side effects. I’m still nervous, though. Wish me luck?"

Courtesy American Cancer Society

An optimistic response came from a user in New Jersey: "I received 5-FU via a pump. ... Not fun, more of a pain in the butt. It turned out to not be a big deal at all," wrote IKickedIt.

"Good luck!" wrote FreeBird in Tampa, Fla. "Dad had carboplatin and Taxol [paclitaxel] for his previous lung cancer. He did really well with it!"

Patients and family members of patients described how to wear the pump, how to shower with the pump (by using plastic wrap and a shower head from a home improvement store), and how to disguise the pump (in a "cute backpack," suggested one user). Another user wrote, "Just kept the pump on my desk."

The new network boasts more than 10,000 registered users who pose questions and offer suggestions on topics both weighty and mundane.

"For those of you who had both options available, how did you decide between a lumpectomy and a mastectomy?" asked a mom from Cincinnati.

"Best advice for a caregiver who gets a bad cold?" queried Iibcarolek from California. "First of all, take care of yourself," advised Fizztig, who recommended frequent hand washing, using hand sanitizer, protecting sneezes, and getting enough rest.

By negotiating the well-organized website, users will find categories where they can share their experience and journey. Categories include "Oh, No," "Celebration," "Decision Point," and "Procedure or Surgery."

The website is organized by diagnosis. There is also a Pinboard where users can search, browse, or post inspirational photos and videos (similar to Pinterest).

One photo on the Pinboard is of a young girl wearing a scarf on her head with the following note from bcncnabb: "People stare. You all know this. You’ve all felt it in restaurants, at the grocery store, or any other place where people don’t get it. ... But wow, what people don’t notice is the fight, the spirit, and the grace that it takes to live with cancer."

Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society (ACS), endorsed the new online tool as an "exciting" use of technology to extend the reach of both the ACS and the oncology community. "We know that people who connect with each other in times like this feel more empowered, less anxious, and can approach this crucial time in their lives feeling supported," he noted.

The website’s exchange of practical tips reminded me of a caregiver’s lament about the difficulties of managing her husband’s percutaneous endoscopic gastrostomy (PEG) tube, which even the visiting in-home nurses didn’t really understand. In the exhausting days following his discharge after surgery for esophageal cancer, she taught herself how to triple flush the tube to prevent middle-of-the-night clogs.

Today, I would refer her to WhatNext, where I’m confident she would receive (and offer) pep talks and helpful advice.

In some cases, connections formed on WhatNext have led to offline friendships. The ACS highlighted a bond formed between MGM48 and MichaelV, both of whom have prostate cancer. "We compare notes and discuss life with cancer," said MGM48. "I’m happy to have a live sounding board sometimes.

"Let’s face it, no one outside really completely gets it," he said.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

When a cancer patient from Menomonie, Wis., reached out to the American Cancer Society’s WhatNext online network seeking treatment reassurance, a ready-made support group jumped into action.

"Anyone familiar with 5-FU [5-fluorouracil], cetuximab (Erbitux), or carboplatin? Has anyone ever worn a pump?" asked Packerbacker. "New nodule revealed metastatic cancer. ... I had cisplatin in the past and tolerated it with minor side effects. I’m still nervous, though. Wish me luck?"

Courtesy American Cancer Society

An optimistic response came from a user in New Jersey: "I received 5-FU via a pump. ... Not fun, more of a pain in the butt. It turned out to not be a big deal at all," wrote IKickedIt.

"Good luck!" wrote FreeBird in Tampa, Fla. "Dad had carboplatin and Taxol [paclitaxel] for his previous lung cancer. He did really well with it!"

Patients and family members of patients described how to wear the pump, how to shower with the pump (by using plastic wrap and a shower head from a home improvement store), and how to disguise the pump (in a "cute backpack," suggested one user). Another user wrote, "Just kept the pump on my desk."

The new network boasts more than 10,000 registered users who pose questions and offer suggestions on topics both weighty and mundane.

"For those of you who had both options available, how did you decide between a lumpectomy and a mastectomy?" asked a mom from Cincinnati.

"Best advice for a caregiver who gets a bad cold?" queried Iibcarolek from California. "First of all, take care of yourself," advised Fizztig, who recommended frequent hand washing, using hand sanitizer, protecting sneezes, and getting enough rest.

By negotiating the well-organized website, users will find categories where they can share their experience and journey. Categories include "Oh, No," "Celebration," "Decision Point," and "Procedure or Surgery."

The website is organized by diagnosis. There is also a Pinboard where users can search, browse, or post inspirational photos and videos (similar to Pinterest).

One photo on the Pinboard is of a young girl wearing a scarf on her head with the following note from bcncnabb: "People stare. You all know this. You’ve all felt it in restaurants, at the grocery store, or any other place where people don’t get it. ... But wow, what people don’t notice is the fight, the spirit, and the grace that it takes to live with cancer."

Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society (ACS), endorsed the new online tool as an "exciting" use of technology to extend the reach of both the ACS and the oncology community. "We know that people who connect with each other in times like this feel more empowered, less anxious, and can approach this crucial time in their lives feeling supported," he noted.

The website’s exchange of practical tips reminded me of a caregiver’s lament about the difficulties of managing her husband’s percutaneous endoscopic gastrostomy (PEG) tube, which even the visiting in-home nurses didn’t really understand. In the exhausting days following his discharge after surgery for esophageal cancer, she taught herself how to triple flush the tube to prevent middle-of-the-night clogs.

Today, I would refer her to WhatNext, where I’m confident she would receive (and offer) pep talks and helpful advice.

In some cases, connections formed on WhatNext have led to offline friendships. The ACS highlighted a bond formed between MGM48 and MichaelV, both of whom have prostate cancer. "We compare notes and discuss life with cancer," said MGM48. "I’m happy to have a live sounding board sometimes.

"Let’s face it, no one outside really completely gets it," he said.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

When a cancer patient from Menomonie, Wis., reached out to the American Cancer Society’s WhatNext online network seeking treatment reassurance, a ready-made support group jumped into action.

"Anyone familiar with 5-FU [5-fluorouracil], cetuximab (Erbitux), or carboplatin? Has anyone ever worn a pump?" asked Packerbacker. "New nodule revealed metastatic cancer. ... I had cisplatin in the past and tolerated it with minor side effects. I’m still nervous, though. Wish me luck?"

Courtesy American Cancer Society

An optimistic response came from a user in New Jersey: "I received 5-FU via a pump. ... Not fun, more of a pain in the butt. It turned out to not be a big deal at all," wrote IKickedIt.

"Good luck!" wrote FreeBird in Tampa, Fla. "Dad had carboplatin and Taxol [paclitaxel] for his previous lung cancer. He did really well with it!"

Patients and family members of patients described how to wear the pump, how to shower with the pump (by using plastic wrap and a shower head from a home improvement store), and how to disguise the pump (in a "cute backpack," suggested one user). Another user wrote, "Just kept the pump on my desk."

The new network boasts more than 10,000 registered users who pose questions and offer suggestions on topics both weighty and mundane.

"For those of you who had both options available, how did you decide between a lumpectomy and a mastectomy?" asked a mom from Cincinnati.

"Best advice for a caregiver who gets a bad cold?" queried Iibcarolek from California. "First of all, take care of yourself," advised Fizztig, who recommended frequent hand washing, using hand sanitizer, protecting sneezes, and getting enough rest.

By negotiating the well-organized website, users will find categories where they can share their experience and journey. Categories include "Oh, No," "Celebration," "Decision Point," and "Procedure or Surgery."

The website is organized by diagnosis. There is also a Pinboard where users can search, browse, or post inspirational photos and videos (similar to Pinterest).

One photo on the Pinboard is of a young girl wearing a scarf on her head with the following note from bcncnabb: "People stare. You all know this. You’ve all felt it in restaurants, at the grocery store, or any other place where people don’t get it. ... But wow, what people don’t notice is the fight, the spirit, and the grace that it takes to live with cancer."

Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society (ACS), endorsed the new online tool as an "exciting" use of technology to extend the reach of both the ACS and the oncology community. "We know that people who connect with each other in times like this feel more empowered, less anxious, and can approach this crucial time in their lives feeling supported," he noted.

The website’s exchange of practical tips reminded me of a caregiver’s lament about the difficulties of managing her husband’s percutaneous endoscopic gastrostomy (PEG) tube, which even the visiting in-home nurses didn’t really understand. In the exhausting days following his discharge after surgery for esophageal cancer, she taught herself how to triple flush the tube to prevent middle-of-the-night clogs.

Today, I would refer her to WhatNext, where I’m confident she would receive (and offer) pep talks and helpful advice.

In some cases, connections formed on WhatNext have led to offline friendships. The ACS highlighted a bond formed between MGM48 and MichaelV, both of whom have prostate cancer. "We compare notes and discuss life with cancer," said MGM48. "I’m happy to have a live sounding board sometimes.

"Let’s face it, no one outside really completely gets it," he said.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

The past year has been quite a roller coaster ride for many of my friends and their families. Several were caught in the throes of Hurricane Sandy and spent days without power and water; many lost their homes and possessions. Others dealt with the loss of a parent or sibling (unrelated to the storm). We, as a nation, faced the unimaginable tragedy of the violent death of children at the hands of a gunman.

While we singularly or collectively grieved these losses, many of us reflected on the reality that our time here on earth is limited. And that started me thinking about death and dying and how we deal (or not) with that juncture in our lives. When it comes to dying, we are often ill prepared for this part of life’s journey. When we are young, we have the misconception (wonderful though it may be) that we are invincible and immortal. We sail through our days seemingly without a care in the world, believing that we will live forever. But, alas, at some point we face the reality of life, when we witness or experience the death of a loved one. And unfortunately, many are left with the responsibility to deal with end-of-life decisions, without ever having had the discussion of what the person wanted in regard to this process. Even as I write this, I am counseling a neighbor whose 78-year-old husband—suddenly and seriously ill—is now in a drug-induced coma. He has a chronic illness, but they never had the conversation.

There is a lot to consider—and tackling the question is difficult, because much of what needs to be identified or clarified is a sensitive subject. Many are not comfortable asking for or sharing information considered very private. But it is important that our wishes are known, so that in the event we cannot act on our own behalf, our preferences for care and treatment are respected. Moreover, we as heath care providers must embrace that Primum non nocere(First do no harm) might include not initiating treatments in an attempt to prolong life when the outcome is inevitable.

Health care providers have spent their careers dedicated to preventing or treating illnesses and eliminating suffering. Advances in technology have allowed us to prolong life. However, many of these advances do not improve the quality of life; rather, they often only delay the process of dying. It is important that we understand which and how much of these technologies our loved ones (and we ourselves) want utilized, or discontinued, when our disease or age has reached the point when it is time to realize our end is near. But the time to discuss and plan for that phase of our life must occur long before the crisis hits.

End-of-life planning is not a new concept. Since the 1980s, the Agency for Healthcare Research and Quality (AHRQ) has both funded and supported dozens of research projects on the topic of end-of-life care. The research funded by AHRQ indicates that many people have not participated in advance planning, although they are interested in and willing to discuss end-of-life care.¹ Worse yet, in many instances, researchers found that care at the end of life sometimes appears to be inconsistent with the patient’s preference to forgo life-sustaining treatment, and patients may receive care they do not want.²

In 1997, the NIH designated the National Institute of Nursing Research (NINR) as the lead institute for end-of-life research to advance the science of palliative and end-of-life care and to lead the way in addressing some of the most critical challenges in clinical care.³ This is further evidence that end-of-life care is an important topic to be discussed, and we, the health care providers, need to initiate the conversation.

The conversation is not reserved for the terminally ill; we must also discuss plans with those who have a chronic illness and even with those who are in “perfect health.” These plans, also known as advance directives, can allay many of the anxieties that patients and families have regarding what to do in the event the patient cannot speak for him- or herself, and instill confidence that the wishes of the patient will be honored.

Advance directives are not reserved for the old and infirm. All of us must plan for the unexpected—the sudden life—threatening illness or injury or freak accident—that leaves us unable to communicate what treatments we want or do not and when we want treatments discontinued. Initiating the discussion is not easy for some. For others, when we see or hear about a tragedy that leaves someone paralyzed or in a coma, we are quick to voice what we would want in a similar situation. That is the perfect lead—in to the discussion regarding our wishes. A structured process for an end-of-life discussion has been outlined by AHRQ researchers.¹ Theirs is a simple five-step plan:

1. Initiate a guided discussion.
2. Introduce the subject of advance care planning and offer information.
3. Prepare and complete advance care planning documents.
4. Review the patient’s preferences on a regular basis and update documentation.
5. Apply the patient’s desires to actual circumstances.¹
(A detailed discussion of these steps can be found at www.ahrq.gov/RESEARCH/endliferia/endria.pdf.)

Now is the time to assist friends, family members, and your patients in discussing and documenting their plans. Take the time to document your own advance directives. Let your family and your health care provider know what you want, and have it put in your health record. Review it annually, in the event that there have been changes in your family or in technology. Do not miss the opportunity to let your family know what you want.

Do you have a plan in place? Share your thoughts by emailing [email protected].

References
1. Kass-Bartelmes BL, Hughes R, Rutherford MK. Advance care planning: preferences for care at the end of life. Rockville, MD: Agency for Healthcare Research and Quality; 2003. Research in Action Issue #12. AHRQ Pub No. 03-0018.
2. Teno JM, Licks S, Lynn J, et al. Do advance directives provide instructions that direct care? J Am Geriatr Soc. 1997;45(4):508-512.
3. NIH National Institute of Nursing Research. Spotlight on end-of-life research. www.ninr .nih.gov/researchandfunding/spotlight-on-end-of-life-research. Accessed January 22, 2013.

The past year has been quite a roller coaster ride for many of my friends and their families. Several were caught in the throes of Hurricane Sandy and spent days without power and water; many lost their homes and possessions. Others dealt with the loss of a parent or sibling (unrelated to the storm). We, as a nation, faced the unimaginable tragedy of the violent death of children at the hands of a gunman.

While we singularly or collectively grieved these losses, many of us reflected on the reality that our time here on earth is limited. And that started me thinking about death and dying and how we deal (or not) with that juncture in our lives. When it comes to dying, we are often ill prepared for this part of life’s journey. When we are young, we have the misconception (wonderful though it may be) that we are invincible and immortal. We sail through our days seemingly without a care in the world, believing that we will live forever. But, alas, at some point we face the reality of life, when we witness or experience the death of a loved one. And unfortunately, many are left with the responsibility to deal with end-of-life decisions, without ever having had the discussion of what the person wanted in regard to this process. Even as I write this, I am counseling a neighbor whose 78-year-old husband—suddenly and seriously ill—is now in a drug-induced coma. He has a chronic illness, but they never had the conversation.

There is a lot to consider—and tackling the question is difficult, because much of what needs to be identified or clarified is a sensitive subject. Many are not comfortable asking for or sharing information considered very private. But it is important that our wishes are known, so that in the event we cannot act on our own behalf, our preferences for care and treatment are respected. Moreover, we as heath care providers must embrace that Primum non nocere(First do no harm) might include not initiating treatments in an attempt to prolong life when the outcome is inevitable.

Health care providers have spent their careers dedicated to preventing or treating illnesses and eliminating suffering. Advances in technology have allowed us to prolong life. However, many of these advances do not improve the quality of life; rather, they often only delay the process of dying. It is important that we understand which and how much of these technologies our loved ones (and we ourselves) want utilized, or discontinued, when our disease or age has reached the point when it is time to realize our end is near. But the time to discuss and plan for that phase of our life must occur long before the crisis hits.

End-of-life planning is not a new concept. Since the 1980s, the Agency for Healthcare Research and Quality (AHRQ) has both funded and supported dozens of research projects on the topic of end-of-life care. The research funded by AHRQ indicates that many people have not participated in advance planning, although they are interested in and willing to discuss end-of-life care.¹ Worse yet, in many instances, researchers found that care at the end of life sometimes appears to be inconsistent with the patient’s preference to forgo life-sustaining treatment, and patients may receive care they do not want.²

In 1997, the NIH designated the National Institute of Nursing Research (NINR) as the lead institute for end-of-life research to advance the science of palliative and end-of-life care and to lead the way in addressing some of the most critical challenges in clinical care.³ This is further evidence that end-of-life care is an important topic to be discussed, and we, the health care providers, need to initiate the conversation.

The conversation is not reserved for the terminally ill; we must also discuss plans with those who have a chronic illness and even with those who are in “perfect health.” These plans, also known as advance directives, can allay many of the anxieties that patients and families have regarding what to do in the event the patient cannot speak for him- or herself, and instill confidence that the wishes of the patient will be honored.

Advance directives are not reserved for the old and infirm. All of us must plan for the unexpected—the sudden life—threatening illness or injury or freak accident—that leaves us unable to communicate what treatments we want or do not and when we want treatments discontinued. Initiating the discussion is not easy for some. For others, when we see or hear about a tragedy that leaves someone paralyzed or in a coma, we are quick to voice what we would want in a similar situation. That is the perfect lead—in to the discussion regarding our wishes. A structured process for an end-of-life discussion has been outlined by AHRQ researchers.¹ Theirs is a simple five-step plan:

1. Initiate a guided discussion.
2. Introduce the subject of advance care planning and offer information.
3. Prepare and complete advance care planning documents.
4. Review the patient’s preferences on a regular basis and update documentation.
5. Apply the patient’s desires to actual circumstances.¹
(A detailed discussion of these steps can be found at www.ahrq.gov/RESEARCH/endliferia/endria.pdf.)

Now is the time to assist friends, family members, and your patients in discussing and documenting their plans. Take the time to document your own advance directives. Let your family and your health care provider know what you want, and have it put in your health record. Review it annually, in the event that there have been changes in your family or in technology. Do not miss the opportunity to let your family know what you want.

Do you have a plan in place? Share your thoughts by emailing [email protected].

References
1. Kass-Bartelmes BL, Hughes R, Rutherford MK. Advance care planning: preferences for care at the end of life. Rockville, MD: Agency for Healthcare Research and Quality; 2003. Research in Action Issue #12. AHRQ Pub No. 03-0018.
2. Teno JM, Licks S, Lynn J, et al. Do advance directives provide instructions that direct care? J Am Geriatr Soc. 1997;45(4):508-512.
3. NIH National Institute of Nursing Research. Spotlight on end-of-life research. www.ninr .nih.gov/researchandfunding/spotlight-on-end-of-life-research. Accessed January 22, 2013.

The past year has been quite a roller coaster ride for many of my friends and their families. Several were caught in the throes of Hurricane Sandy and spent days without power and water; many lost their homes and possessions. Others dealt with the loss of a parent or sibling (unrelated to the storm). We, as a nation, faced the unimaginable tragedy of the violent death of children at the hands of a gunman.

While we singularly or collectively grieved these losses, many of us reflected on the reality that our time here on earth is limited. And that started me thinking about death and dying and how we deal (or not) with that juncture in our lives. When it comes to dying, we are often ill prepared for this part of life’s journey. When we are young, we have the misconception (wonderful though it may be) that we are invincible and immortal. We sail through our days seemingly without a care in the world, believing that we will live forever. But, alas, at some point we face the reality of life, when we witness or experience the death of a loved one. And unfortunately, many are left with the responsibility to deal with end-of-life decisions, without ever having had the discussion of what the person wanted in regard to this process. Even as I write this, I am counseling a neighbor whose 78-year-old husband—suddenly and seriously ill—is now in a drug-induced coma. He has a chronic illness, but they never had the conversation.

There is a lot to consider—and tackling the question is difficult, because much of what needs to be identified or clarified is a sensitive subject. Many are not comfortable asking for or sharing information considered very private. But it is important that our wishes are known, so that in the event we cannot act on our own behalf, our preferences for care and treatment are respected. Moreover, we as heath care providers must embrace that Primum non nocere(First do no harm) might include not initiating treatments in an attempt to prolong life when the outcome is inevitable.

Health care providers have spent their careers dedicated to preventing or treating illnesses and eliminating suffering. Advances in technology have allowed us to prolong life. However, many of these advances do not improve the quality of life; rather, they often only delay the process of dying. It is important that we understand which and how much of these technologies our loved ones (and we ourselves) want utilized, or discontinued, when our disease or age has reached the point when it is time to realize our end is near. But the time to discuss and plan for that phase of our life must occur long before the crisis hits.

End-of-life planning is not a new concept. Since the 1980s, the Agency for Healthcare Research and Quality (AHRQ) has both funded and supported dozens of research projects on the topic of end-of-life care. The research funded by AHRQ indicates that many people have not participated in advance planning, although they are interested in and willing to discuss end-of-life care.¹ Worse yet, in many instances, researchers found that care at the end of life sometimes appears to be inconsistent with the patient’s preference to forgo life-sustaining treatment, and patients may receive care they do not want.²

In 1997, the NIH designated the National Institute of Nursing Research (NINR) as the lead institute for end-of-life research to advance the science of palliative and end-of-life care and to lead the way in addressing some of the most critical challenges in clinical care.³ This is further evidence that end-of-life care is an important topic to be discussed, and we, the health care providers, need to initiate the conversation.

The conversation is not reserved for the terminally ill; we must also discuss plans with those who have a chronic illness and even with those who are in “perfect health.” These plans, also known as advance directives, can allay many of the anxieties that patients and families have regarding what to do in the event the patient cannot speak for him- or herself, and instill confidence that the wishes of the patient will be honored.

Advance directives are not reserved for the old and infirm. All of us must plan for the unexpected—the sudden life—threatening illness or injury or freak accident—that leaves us unable to communicate what treatments we want or do not and when we want treatments discontinued. Initiating the discussion is not easy for some. For others, when we see or hear about a tragedy that leaves someone paralyzed or in a coma, we are quick to voice what we would want in a similar situation. That is the perfect lead—in to the discussion regarding our wishes. A structured process for an end-of-life discussion has been outlined by AHRQ researchers.¹ Theirs is a simple five-step plan:

1. Initiate a guided discussion.
2. Introduce the subject of advance care planning and offer information.
3. Prepare and complete advance care planning documents.
4. Review the patient’s preferences on a regular basis and update documentation.
5. Apply the patient’s desires to actual circumstances.¹
(A detailed discussion of these steps can be found at www.ahrq.gov/RESEARCH/endliferia/endria.pdf.)

Now is the time to assist friends, family members, and your patients in discussing and documenting their plans. Take the time to document your own advance directives. Let your family and your health care provider know what you want, and have it put in your health record. Review it annually, in the event that there have been changes in your family or in technology. Do not miss the opportunity to let your family know what you want.

Do you have a plan in place? Share your thoughts by emailing [email protected].

References
1. Kass-Bartelmes BL, Hughes R, Rutherford MK. Advance care planning: preferences for care at the end of life. Rockville, MD: Agency for Healthcare Research and Quality; 2003. Research in Action Issue #12. AHRQ Pub No. 03-0018.
2. Teno JM, Licks S, Lynn J, et al. Do advance directives provide instructions that direct care? J Am Geriatr Soc. 1997;45(4):508-512.
3. NIH National Institute of Nursing Research. Spotlight on end-of-life research. www.ninr .nih.gov/researchandfunding/spotlight-on-end-of-life-research. Accessed January 22, 2013.

The page came around 2 a.m. It had been a very busy night, with a dozen or so surgical consults from an overflowing emergency department in a large urban hospital. Most of the patients referred to the surgical service were immigrants with a limited knowledge of English. Most were elderly. And most were alone.

I was 2 months out of medical school, on call without a senior resident and with staff backup at home. I struggled to remain awake while catering to the seemingly endless pages from the ward and the emergency department. It was a rite of passage that every intern has had to endure.

The patient was an 85-year-old Cantonese-speaking woman transferred to the emergency department by ambulance from her nursing home. The accompanying note, mostly illegible, suggested that she had been complaining of abdominal pain and distention for the past 2 days and had been initially managed with laxatives.

That afternoon, however, her level of consciousness began to deteriorate and she became febrile and hypotensive, so she was transferred to our hospital. She had a history of atrial fibrillation, hypertension, and advanced Alzheimer’s dementia. She also had an accompanying "Do Not Resuscitate/No Life Support" form.

A CT scan of the abdomen arranged by the emergency department physician identified a clot in the superior mesenteric artery and extensive ischemic changes in most of her small bowel. She had a high white blood cell count, and her serum lactate was alarmingly elevated, despite several boluses of intravenous crystalloid solution. She was also becoming hemodynamically unstable.

I immediately called the staff surgeon to advocate for an emergency laparotomy. Given the patient’s multiple comorbidities and grim prognosis, we decided not to operate. The staff surgeon’s instructions were as abrupt as they were clear: "Turf her to medicine; she’s palliative."

The medical senior resident, however, would have none of it. Equally overwhelmed with consults and not in a particularly good mood, he refused to even see the patient. If she was expected to die overnight because of a surgical issue, he argued, then the surgery team was just as equipped as he to take care of her. The emergency department physician agreed, and so the patient was admitted to the surgical service for her few remaining hours of life.

What followed was agonizing for the entire surgical team. The nurses on the ward were asking some very reasonable questions that I could not answer: Do we keep titrating the patient’s oxygen to keep up with her desaturation? What do we give her for pain control? How do we manage her shortness of breath? Should we continue giving her intravenous fluids? Can you help us find her family members? Should we keep the bladder catheter in place?

I strained to remember what we had learned in our few palliative care lectures back in medical school. Intravenous fluids were OK, but oxygen was not. Or was it the other way around? Google, the ever-faithful guardian of the panicking intern, was unhelpful. I could not find a reputable online resource to help guide the management of this patient and, given the other sick patients who needed attention, I could not sit down to perform a thorough online literature search. The hospital’s switchboard was equally disappointing – there were no palliative care physicians on call, and the palliative team only accepted pages after 8 a.m., an appalling 5 hours away.

Eventually, I decided to support the patient with an oxygen mask and to continue her intravenous fluid resuscitation. I gave her plenty of narcotics and antiemetics to soothe the discomfort. We were unable to reach any family members despite several attempts. She died just after 5 a.m., without any visible signs of discomfort. It was the first death certificate I had ever signed.

Reflecting on this experience, I was upset at my inability to quickly and adequately care for this patient’s end-of-life needs. I was also angry that I had not prepared myself appropriately for that night on call, and I would have done several things differently had I had the chance.

General surgeons take immense pride in being internists who can operate. We enjoy debating antibiotic, diuretics, and anticoagulation choices with the specialists consulting on our patients, but we often simply "switch off" whenever the patient is labeled "palliative" or "end of life" – relying entirely on the palliative care team for help. And yet, we’re the ones who admit, operate on, and develop therapeutic relationships with those patients and their families. It just doesn’t seem right, but there are several reasons for this dilemma.

First, the fast pace and busy nature of any surgical service means that trainees and staff are under a lot of pressure to round as quickly and efficiently as possible and get to the operating room early in the morning. Given current trainee work-hour limitations and mandated hand-over, today’s junior staff feel this pressure all the more acutely. There simply isn’t enough time or opportunity for continuity of care. Surgical teams can’t engage palliative patients and their families in the way that dedicated palliative care teams can, and so surgical teams are often more comfortable delegating this responsibility entirely to their palliative care colleagues.

Second, there is an emotional burden to caring for palliative patients and their families. Palliation and end-of-life care imply that surgery is neither possible nor advisable any longer. It can be difficult for the surgeon to make that mental segue and assume the dual role of the psychological and medical care giver. Just as surgeons prefer that cardiologists manage their patients’ arrhythmias and nephrologists their patients’ kidney failures, they may prefer that palliative care specialists manage the emotional and medical needs of the patients on whom they can no longer operate.

Furthermore, surgical trainees have limited exposure to palliative care in the clinical setting. As the field of surgery becomes progressively more complex, palliative care training has not been at the forefront of the educational agenda. While it is taught in medical schools and in the surgical residency curriculum, there are few formalized core rotations that offer the surgical resident an insight into the clinical applications of palliative care, except for those who are particularly interested and seek such learning opportunities out in the form of an elective rotation.

The development of dedicated and multidisciplinary palliative care teams that include staff, nurse practitioners, and palliative fellows has further limited surgical resident exposure to the field. Simply put, the current medical system encourages surgical trainees to sign off on the surgical palliative patient.

This, however, isn’t good enough. Palliative care of the surgical patient needs to be a pillar of surgical training. Trainees need to be as comfortable with managing the symptoms of the dying surgical patient as they are administering fluid boluses and ordering narcotics for postoperative pain, especially late at night when there is no palliative care support.

The American College of Surgeons has responded to this challenge by developing numerous educational initiatives through its Palliative Workgroup. It has published a comprehensive surgical palliative care self-study guide specifically for residents (Surgical Palliative Care: A Residents Guide, available for free download).

There are also several regularly updated online palliative care references available either through subscription websites such as UpToDate or for free, such as the Medical College of Wisconsin’s End of Life/Palliative Education Resource Center, which offers "Fast Facts" on the management of the dying patient.

Palliative care is widely accepted today as an important clinical discipline that provides vital support to a growing proportion of the patient population. Surgical training must keep pace with this evolving reality because, at the end of the day, to be without agony and discomfort is a standard of care that every dying patient expects – not just a heroic measure that we can simply ignore.

Dr. Kayssi is a PGY IV in the general surgery program at the University of Toronto.

Dr. Easson is an ACS Fellow and assistant professor in the department of surgery and the Institute of Health, Policy, Management and Evaluation at the University of Toronto.

The page came around 2 a.m. It had been a very busy night, with a dozen or so surgical consults from an overflowing emergency department in a large urban hospital. Most of the patients referred to the surgical service were immigrants with a limited knowledge of English. Most were elderly. And most were alone.

I was 2 months out of medical school, on call without a senior resident and with staff backup at home. I struggled to remain awake while catering to the seemingly endless pages from the ward and the emergency department. It was a rite of passage that every intern has had to endure.

The patient was an 85-year-old Cantonese-speaking woman transferred to the emergency department by ambulance from her nursing home. The accompanying note, mostly illegible, suggested that she had been complaining of abdominal pain and distention for the past 2 days and had been initially managed with laxatives.

That afternoon, however, her level of consciousness began to deteriorate and she became febrile and hypotensive, so she was transferred to our hospital. She had a history of atrial fibrillation, hypertension, and advanced Alzheimer’s dementia. She also had an accompanying "Do Not Resuscitate/No Life Support" form.

A CT scan of the abdomen arranged by the emergency department physician identified a clot in the superior mesenteric artery and extensive ischemic changes in most of her small bowel. She had a high white blood cell count, and her serum lactate was alarmingly elevated, despite several boluses of intravenous crystalloid solution. She was also becoming hemodynamically unstable.

I immediately called the staff surgeon to advocate for an emergency laparotomy. Given the patient’s multiple comorbidities and grim prognosis, we decided not to operate. The staff surgeon’s instructions were as abrupt as they were clear: "Turf her to medicine; she’s palliative."

The medical senior resident, however, would have none of it. Equally overwhelmed with consults and not in a particularly good mood, he refused to even see the patient. If she was expected to die overnight because of a surgical issue, he argued, then the surgery team was just as equipped as he to take care of her. The emergency department physician agreed, and so the patient was admitted to the surgical service for her few remaining hours of life.

What followed was agonizing for the entire surgical team. The nurses on the ward were asking some very reasonable questions that I could not answer: Do we keep titrating the patient’s oxygen to keep up with her desaturation? What do we give her for pain control? How do we manage her shortness of breath? Should we continue giving her intravenous fluids? Can you help us find her family members? Should we keep the bladder catheter in place?

I strained to remember what we had learned in our few palliative care lectures back in medical school. Intravenous fluids were OK, but oxygen was not. Or was it the other way around? Google, the ever-faithful guardian of the panicking intern, was unhelpful. I could not find a reputable online resource to help guide the management of this patient and, given the other sick patients who needed attention, I could not sit down to perform a thorough online literature search. The hospital’s switchboard was equally disappointing – there were no palliative care physicians on call, and the palliative team only accepted pages after 8 a.m., an appalling 5 hours away.

Eventually, I decided to support the patient with an oxygen mask and to continue her intravenous fluid resuscitation. I gave her plenty of narcotics and antiemetics to soothe the discomfort. We were unable to reach any family members despite several attempts. She died just after 5 a.m., without any visible signs of discomfort. It was the first death certificate I had ever signed.

Reflecting on this experience, I was upset at my inability to quickly and adequately care for this patient’s end-of-life needs. I was also angry that I had not prepared myself appropriately for that night on call, and I would have done several things differently had I had the chance.

General surgeons take immense pride in being internists who can operate. We enjoy debating antibiotic, diuretics, and anticoagulation choices with the specialists consulting on our patients, but we often simply "switch off" whenever the patient is labeled "palliative" or "end of life" – relying entirely on the palliative care team for help. And yet, we’re the ones who admit, operate on, and develop therapeutic relationships with those patients and their families. It just doesn’t seem right, but there are several reasons for this dilemma.

First, the fast pace and busy nature of any surgical service means that trainees and staff are under a lot of pressure to round as quickly and efficiently as possible and get to the operating room early in the morning. Given current trainee work-hour limitations and mandated hand-over, today’s junior staff feel this pressure all the more acutely. There simply isn’t enough time or opportunity for continuity of care. Surgical teams can’t engage palliative patients and their families in the way that dedicated palliative care teams can, and so surgical teams are often more comfortable delegating this responsibility entirely to their palliative care colleagues.

Second, there is an emotional burden to caring for palliative patients and their families. Palliation and end-of-life care imply that surgery is neither possible nor advisable any longer. It can be difficult for the surgeon to make that mental segue and assume the dual role of the psychological and medical care giver. Just as surgeons prefer that cardiologists manage their patients’ arrhythmias and nephrologists their patients’ kidney failures, they may prefer that palliative care specialists manage the emotional and medical needs of the patients on whom they can no longer operate.

Furthermore, surgical trainees have limited exposure to palliative care in the clinical setting. As the field of surgery becomes progressively more complex, palliative care training has not been at the forefront of the educational agenda. While it is taught in medical schools and in the surgical residency curriculum, there are few formalized core rotations that offer the surgical resident an insight into the clinical applications of palliative care, except for those who are particularly interested and seek such learning opportunities out in the form of an elective rotation.

The development of dedicated and multidisciplinary palliative care teams that include staff, nurse practitioners, and palliative fellows has further limited surgical resident exposure to the field. Simply put, the current medical system encourages surgical trainees to sign off on the surgical palliative patient.

This, however, isn’t good enough. Palliative care of the surgical patient needs to be a pillar of surgical training. Trainees need to be as comfortable with managing the symptoms of the dying surgical patient as they are administering fluid boluses and ordering narcotics for postoperative pain, especially late at night when there is no palliative care support.

The American College of Surgeons has responded to this challenge by developing numerous educational initiatives through its Palliative Workgroup. It has published a comprehensive surgical palliative care self-study guide specifically for residents (Surgical Palliative Care: A Residents Guide, available for free download).

There are also several regularly updated online palliative care references available either through subscription websites such as UpToDate or for free, such as the Medical College of Wisconsin’s End of Life/Palliative Education Resource Center, which offers "Fast Facts" on the management of the dying patient.

Palliative care is widely accepted today as an important clinical discipline that provides vital support to a growing proportion of the patient population. Surgical training must keep pace with this evolving reality because, at the end of the day, to be without agony and discomfort is a standard of care that every dying patient expects – not just a heroic measure that we can simply ignore.

Dr. Kayssi is a PGY IV in the general surgery program at the University of Toronto.

Dr. Easson is an ACS Fellow and assistant professor in the department of surgery and the Institute of Health, Policy, Management and Evaluation at the University of Toronto.

The page came around 2 a.m. It had been a very busy night, with a dozen or so surgical consults from an overflowing emergency department in a large urban hospital. Most of the patients referred to the surgical service were immigrants with a limited knowledge of English. Most were elderly. And most were alone.

I was 2 months out of medical school, on call without a senior resident and with staff backup at home. I struggled to remain awake while catering to the seemingly endless pages from the ward and the emergency department. It was a rite of passage that every intern has had to endure.

The patient was an 85-year-old Cantonese-speaking woman transferred to the emergency department by ambulance from her nursing home. The accompanying note, mostly illegible, suggested that she had been complaining of abdominal pain and distention for the past 2 days and had been initially managed with laxatives.

That afternoon, however, her level of consciousness began to deteriorate and she became febrile and hypotensive, so she was transferred to our hospital. She had a history of atrial fibrillation, hypertension, and advanced Alzheimer’s dementia. She also had an accompanying "Do Not Resuscitate/No Life Support" form.

A CT scan of the abdomen arranged by the emergency department physician identified a clot in the superior mesenteric artery and extensive ischemic changes in most of her small bowel. She had a high white blood cell count, and her serum lactate was alarmingly elevated, despite several boluses of intravenous crystalloid solution. She was also becoming hemodynamically unstable.

I immediately called the staff surgeon to advocate for an emergency laparotomy. Given the patient’s multiple comorbidities and grim prognosis, we decided not to operate. The staff surgeon’s instructions were as abrupt as they were clear: "Turf her to medicine; she’s palliative."

The medical senior resident, however, would have none of it. Equally overwhelmed with consults and not in a particularly good mood, he refused to even see the patient. If she was expected to die overnight because of a surgical issue, he argued, then the surgery team was just as equipped as he to take care of her. The emergency department physician agreed, and so the patient was admitted to the surgical service for her few remaining hours of life.

What followed was agonizing for the entire surgical team. The nurses on the ward were asking some very reasonable questions that I could not answer: Do we keep titrating the patient’s oxygen to keep up with her desaturation? What do we give her for pain control? How do we manage her shortness of breath? Should we continue giving her intravenous fluids? Can you help us find her family members? Should we keep the bladder catheter in place?

I strained to remember what we had learned in our few palliative care lectures back in medical school. Intravenous fluids were OK, but oxygen was not. Or was it the other way around? Google, the ever-faithful guardian of the panicking intern, was unhelpful. I could not find a reputable online resource to help guide the management of this patient and, given the other sick patients who needed attention, I could not sit down to perform a thorough online literature search. The hospital’s switchboard was equally disappointing – there were no palliative care physicians on call, and the palliative team only accepted pages after 8 a.m., an appalling 5 hours away.

Eventually, I decided to support the patient with an oxygen mask and to continue her intravenous fluid resuscitation. I gave her plenty of narcotics and antiemetics to soothe the discomfort. We were unable to reach any family members despite several attempts. She died just after 5 a.m., without any visible signs of discomfort. It was the first death certificate I had ever signed.

Reflecting on this experience, I was upset at my inability to quickly and adequately care for this patient’s end-of-life needs. I was also angry that I had not prepared myself appropriately for that night on call, and I would have done several things differently had I had the chance.

General surgeons take immense pride in being internists who can operate. We enjoy debating antibiotic, diuretics, and anticoagulation choices with the specialists consulting on our patients, but we often simply "switch off" whenever the patient is labeled "palliative" or "end of life" – relying entirely on the palliative care team for help. And yet, we’re the ones who admit, operate on, and develop therapeutic relationships with those patients and their families. It just doesn’t seem right, but there are several reasons for this dilemma.

First, the fast pace and busy nature of any surgical service means that trainees and staff are under a lot of pressure to round as quickly and efficiently as possible and get to the operating room early in the morning. Given current trainee work-hour limitations and mandated hand-over, today’s junior staff feel this pressure all the more acutely. There simply isn’t enough time or opportunity for continuity of care. Surgical teams can’t engage palliative patients and their families in the way that dedicated palliative care teams can, and so surgical teams are often more comfortable delegating this responsibility entirely to their palliative care colleagues.

Second, there is an emotional burden to caring for palliative patients and their families. Palliation and end-of-life care imply that surgery is neither possible nor advisable any longer. It can be difficult for the surgeon to make that mental segue and assume the dual role of the psychological and medical care giver. Just as surgeons prefer that cardiologists manage their patients’ arrhythmias and nephrologists their patients’ kidney failures, they may prefer that palliative care specialists manage the emotional and medical needs of the patients on whom they can no longer operate.

Furthermore, surgical trainees have limited exposure to palliative care in the clinical setting. As the field of surgery becomes progressively more complex, palliative care training has not been at the forefront of the educational agenda. While it is taught in medical schools and in the surgical residency curriculum, there are few formalized core rotations that offer the surgical resident an insight into the clinical applications of palliative care, except for those who are particularly interested and seek such learning opportunities out in the form of an elective rotation.

The development of dedicated and multidisciplinary palliative care teams that include staff, nurse practitioners, and palliative fellows has further limited surgical resident exposure to the field. Simply put, the current medical system encourages surgical trainees to sign off on the surgical palliative patient.

This, however, isn’t good enough. Palliative care of the surgical patient needs to be a pillar of surgical training. Trainees need to be as comfortable with managing the symptoms of the dying surgical patient as they are administering fluid boluses and ordering narcotics for postoperative pain, especially late at night when there is no palliative care support.

The American College of Surgeons has responded to this challenge by developing numerous educational initiatives through its Palliative Workgroup. It has published a comprehensive surgical palliative care self-study guide specifically for residents (Surgical Palliative Care: A Residents Guide, available for free download).

There are also several regularly updated online palliative care references available either through subscription websites such as UpToDate or for free, such as the Medical College of Wisconsin’s End of Life/Palliative Education Resource Center, which offers "Fast Facts" on the management of the dying patient.

Palliative care is widely accepted today as an important clinical discipline that provides vital support to a growing proportion of the patient population. Surgical training must keep pace with this evolving reality because, at the end of the day, to be without agony and discomfort is a standard of care that every dying patient expects – not just a heroic measure that we can simply ignore.

Dr. Kayssi is a PGY IV in the general surgery program at the University of Toronto.

Dr. Easson is an ACS Fellow and assistant professor in the department of surgery and the Institute of Health, Policy, Management and Evaluation at the University of Toronto.

From Hollywood to Washington, care at the end of life increasingly is part of the national conversation.

As more than 70 million baby boomers (Americans born between 1946 and 1964) approach the end of their life spans, the cultural, clinical and socioeconomic impacts of end-of-life care have become high-profile topics. The French film "Amour," which depicts the challenges faced by an octogenarian couple after the wife has a series of strokes, has received an Academy Award Best Picture nomination. The Institute of Medicine will convene a panel of experts on Feb. 22-24 in Washington to examine the state of end-of-life care. The goal of the IOM Committee on Transforming End of Life Care is to produce a consensus report by 2014 to address end-of-life care. "Coordinated, expert, compassionate care for people dying from chronic diseases continues to challenge the American health care system," according to the IOM’s online announcement of the meeting.

In addition, the Coalition to Transform Advanced Care is hosting a National Summit on Advanced Illness Care on Jan. 29-30 in Washington. The Coalition includes a wide range of constituencies including the IOM, the American Heart Association, the American Academy of Hospice and Palliative Medicine, and the American Geriatrics Society, as well as insurers, health systems, patient advocacy groups, and others.

As policy issues are discussed and begin to take shape, outcomes research focused on end-of-life care will increasingly gain importance. In the area of cancer care, here are some of the highlights of such research presented at a Quality Care Symposium sponsored by the American Society of Clinical Oncology in December 2012 in San Diego.

Palliative care teams: A palliative care team formed by Dr. Allen R. Chen and his associates at Johns Hopkins’s comprehensive cancer center helped change patient and family decisions regarding end-of-life care during a 4-year period and decreased use of intensive or invasive procedures in the last 6 months of life.

The team offered inpatient and clinic consultations and didactic sessions to physicians to improve how they discuss end-of-life issues with patients, plus support for family meetings to discuss and document the goals of care, said Dr. Chen, associate professor of oncology and pediatrics at Johns Hopkins University, Baltimore.

Of the 525 oncology patients who died in the cancer center while hospitalized from 2008 through 2011, the proportion who chose to have do-not-resuscitate (DNR) orders, withdrew ICU support, or chose comfort care instead of more aggressive care increased from 81% to 95% over the course of the 4 years, a statistically significant difference, he reported.

The rate of ICU care during patients’ final hospitalizations did not change significantly, but the proportion of patients who were put on mechanical ventilation for more than 14 days decreased significantly from 10% to 5%. These earlier withdrawals of care did not increase the risk of death, Dr. Chen said – the rate of survival to discharge from the oncology ICU did not change significantly.

The investigators now are looking for ways to minimize ICU visits at the end of life, he said. The presence of advanced cancer, being on a cardiac monitor, or needing supplemental oxygen foreshadowed critical illness in patients in the study. "We want to facilitate the difficult discussion" about end-of-life care choices "before critical care is needed," he said. So far, their efforts haven’t resulted in decreased use of ICU services at the end of life.

Minimizing surgical risks: One of the first comprehensive analyses of surgical outcomes in patients with disseminated cancer found that the risk of death increases greatly with emergency surgery.

John Pesavento, a medical student at Creighton University, Omaha, Neb., and his associates analyzed preoperative and postoperative data from the American College of Surgeon’s National Surgical Quality Improvement Program database on move than 147,000 patients who underwent surgical procedures between 2005 and 2008.

Eight of the 10 most common procedures resulted in significantly higher 30-day mortality rates in the cancer patients as compared with the same surgeries in patients who did not have disseminated cancer.

Comparing patients with and without disseminated cancer, 30-day mortality rates were 21% and 15%, respectively, after exploration of the abdomen, 15% and 9% after removal of the small bowel, 11% and 6% after colon removal, 11% and 5% after colostomy, 10% and 5% after partial removal of the colon, 10% and 0.5% after cholecystectomy, 1.8% and 0.9% after repair of a bowel opening, and 1% and 0.1% after mastectomy, he reported. The most common operations in patients with disseminated cancer were partial removal of the colon (in 11%), partial removal of the liver (9%), partial removal of the intestine (5%), and abdominal exploration (5%), he reported in a poster presentation.

When done as emergency procedures, however, 7 of the top 10 surgeries led to significantly higher 30-day mortality rates for disseminated cancer patients. Death rates in patients with disseminated cancer were 44% for emergency surgery and 12% for nonemergent surgery to explore the abdomen; the respective rates were 33% and 6% after bowel-to-bowel fusion, 31% and 4% after removal of the colon, 28% and 10% after removal of the small intestine, 23% and 5% after cholecystectomy, 22% and 7% after partial removal of the colon, and 19% and 9% after colostomy.

The findings should help physicians counsel their patients with disseminated cancer to help them decide whether it’s worth undergoing surgery – especially emergency surgery – given the higher risks of death, Mr. Pesavento said.

Physicians’ attitudes and education: In a separate study, 16 urologists and four primary care physicians who were undergoing surgical training in urology were interviewed about their attitudes regarding end-of-life care for men dying of prostate cancer. They viewed current end-of-life care as shoddily organized and poorly integrated, and said that ideal outcomes should be defined by patients’ own values and preferences, Dr. Jonathan Bergman and his associates reported in a poster presentation.

The physicians said that, ideally, a multidisciplinary team would care for dying patients, but respondents varied in the degree to which they saw themselves participating, reported Dr. Bergman of the University of California, Los Angeles.

The findings suggest that physician education about end-of-life care needs improvement, and that clinicians should be guided to deliver end-of-life care that is patient-centered and congruent with patients’ values, he said.

Dying in the hospital: Among 2,621 patients with solid tumors, those who had contact with a specialist palliative care team more than a month before their deaths were less likely to die in the hospital (16%) than were patients who had later or no contact with the team (20%), J. Brian Cassel, Ph.D., reported in a poster presentation.

Dr. Cassel and his associates analyzed claims data on the last 6 months of life for 3,128 adults with cancer who had at least one contact with the Virginia Commonwealth University cancer center in Richmond between January 2009 and July 2011. The data set included patients who had solid tumors, underwent bone marrow transfer, or had other hematologic malignancies.

The findings provided a snapshot of end-of-life care at the university, where 32% of the cancer patients were admitted to the hospital within their last 30 days of life, 19% had at least one readmission during their last 6 months of life, and 15% died in the hospital. Chemotherapy was given to 11% in their last month of life, and to 7% in their last 2 weeks of life, said Dr. Cassel of the university.

The specialist palliative care team made contact with 28% of patients a median of 6-10 days before the death of patients with bone marrow transfer or other nonhematologic malignancies and a median of 25 days before the death of patients with solid tumors.

Chemotherapy at the end of life: Patients with hematologic malignancies were significantly more likely to get chemotherapy in the last 30 days of life (38%) compared with patients with solid tumors (8%), Dr. Alma Rodriguez and her associates reported in a poster presentation.

The investigators reviewed data on 7,399 patients who received care for a solid tumor or hematological malignancy at the University of Texas M.D. Anderson Cancer Center, Houston, and died between December 2010 and May 2012. Overall, 14% of patients received chemotherapy within the last 30 days of life.

Of the 1,262 patients who died in the hospital, 44% received chemotherapy within the last 30 days of life, compared with 7% of the 6,137 patients who died in other locations, reported Dr. Rodriguez, professor of medicine at the cancer center.

Chemotherapy within the last 30 days of life was 3 times more likely in patients with metastatic solid tumors, 14 times more likely in patients with nonrelapsed hematologic malignancy, and 36 times more likely in patients with historical or current relapse of hematologic malignancy.

Patients 65 years or older were 38% less likely than were younger patients to get chemotherapy within the last 30 days of life. Patients with one or more comorbidity (most frequently heart failure and coronary artery diseases) were 28% less likely to get chemotherapy within the last 30 days of life as compared with patients without comorbidities.

"As oncologists, we must communicate clearly with our patients about realistic goals of treatment and the likelihood of life-threatening complications of chemotherapy," Dr. Rodriguez said in the poster.

Outpatient palliative care: Dr. Kavitha Ramchandran and her associates at Stanford (Calif.) University studied their system’s electronic medical records to look at the use of palliative care in outpatient clinics from January through September 2012. The number of palliative care contacts with outpatient clinic patients increased from 10 in January to 45 in September. The number of physicians referring outpatients to palliative care increased from 6 in January to 21 in September, she said in a poster presentation.

More than 65% of patients who were referred for palliative care were younger than 65 years, said Dr. Ramchandran of the university. Most patients had only one visit with palliative care (41%) or two visits (23%).

The findings suggest that outpatient palliative care is a growing specialty, she suggested. The data are not mature enough to assess any impact on the quality of end-of-life care or on the efficiency of care, she added.

Dr. Chen and Mr. Pesavento reported having no financial disclosures. Dr. Ramchandran’s study was funded in part by the Stanford Corporate Partners Fund and by various Stanford departments. No financial disclosures were available for the other presenters.

From Hollywood to Washington, care at the end of life increasingly is part of the national conversation.

As more than 70 million baby boomers (Americans born between 1946 and 1964) approach the end of their life spans, the cultural, clinical and socioeconomic impacts of end-of-life care have become high-profile topics. The French film "Amour," which depicts the challenges faced by an octogenarian couple after the wife has a series of strokes, has received an Academy Award Best Picture nomination. The Institute of Medicine will convene a panel of experts on Feb. 22-24 in Washington to examine the state of end-of-life care. The goal of the IOM Committee on Transforming End of Life Care is to produce a consensus report by 2014 to address end-of-life care. "Coordinated, expert, compassionate care for people dying from chronic diseases continues to challenge the American health care system," according to the IOM’s online announcement of the meeting.

In addition, the Coalition to Transform Advanced Care is hosting a National Summit on Advanced Illness Care on Jan. 29-30 in Washington. The Coalition includes a wide range of constituencies including the IOM, the American Heart Association, the American Academy of Hospice and Palliative Medicine, and the American Geriatrics Society, as well as insurers, health systems, patient advocacy groups, and others.

As policy issues are discussed and begin to take shape, outcomes research focused on end-of-life care will increasingly gain importance. In the area of cancer care, here are some of the highlights of such research presented at a Quality Care Symposium sponsored by the American Society of Clinical Oncology in December 2012 in San Diego.

Palliative care teams: A palliative care team formed by Dr. Allen R. Chen and his associates at Johns Hopkins’s comprehensive cancer center helped change patient and family decisions regarding end-of-life care during a 4-year period and decreased use of intensive or invasive procedures in the last 6 months of life.

The team offered inpatient and clinic consultations and didactic sessions to physicians to improve how they discuss end-of-life issues with patients, plus support for family meetings to discuss and document the goals of care, said Dr. Chen, associate professor of oncology and pediatrics at Johns Hopkins University, Baltimore.

Of the 525 oncology patients who died in the cancer center while hospitalized from 2008 through 2011, the proportion who chose to have do-not-resuscitate (DNR) orders, withdrew ICU support, or chose comfort care instead of more aggressive care increased from 81% to 95% over the course of the 4 years, a statistically significant difference, he reported.

The rate of ICU care during patients’ final hospitalizations did not change significantly, but the proportion of patients who were put on mechanical ventilation for more than 14 days decreased significantly from 10% to 5%. These earlier withdrawals of care did not increase the risk of death, Dr. Chen said – the rate of survival to discharge from the oncology ICU did not change significantly.

The investigators now are looking for ways to minimize ICU visits at the end of life, he said. The presence of advanced cancer, being on a cardiac monitor, or needing supplemental oxygen foreshadowed critical illness in patients in the study. "We want to facilitate the difficult discussion" about end-of-life care choices "before critical care is needed," he said. So far, their efforts haven’t resulted in decreased use of ICU services at the end of life.

Minimizing surgical risks: One of the first comprehensive analyses of surgical outcomes in patients with disseminated cancer found that the risk of death increases greatly with emergency surgery.

John Pesavento, a medical student at Creighton University, Omaha, Neb., and his associates analyzed preoperative and postoperative data from the American College of Surgeon’s National Surgical Quality Improvement Program database on move than 147,000 patients who underwent surgical procedures between 2005 and 2008.

Eight of the 10 most common procedures resulted in significantly higher 30-day mortality rates in the cancer patients as compared with the same surgeries in patients who did not have disseminated cancer.

Comparing patients with and without disseminated cancer, 30-day mortality rates were 21% and 15%, respectively, after exploration of the abdomen, 15% and 9% after removal of the small bowel, 11% and 6% after colon removal, 11% and 5% after colostomy, 10% and 5% after partial removal of the colon, 10% and 0.5% after cholecystectomy, 1.8% and 0.9% after repair of a bowel opening, and 1% and 0.1% after mastectomy, he reported. The most common operations in patients with disseminated cancer were partial removal of the colon (in 11%), partial removal of the liver (9%), partial removal of the intestine (5%), and abdominal exploration (5%), he reported in a poster presentation.

When done as emergency procedures, however, 7 of the top 10 surgeries led to significantly higher 30-day mortality rates for disseminated cancer patients. Death rates in patients with disseminated cancer were 44% for emergency surgery and 12% for nonemergent surgery to explore the abdomen; the respective rates were 33% and 6% after bowel-to-bowel fusion, 31% and 4% after removal of the colon, 28% and 10% after removal of the small intestine, 23% and 5% after cholecystectomy, 22% and 7% after partial removal of the colon, and 19% and 9% after colostomy.

The findings should help physicians counsel their patients with disseminated cancer to help them decide whether it’s worth undergoing surgery – especially emergency surgery – given the higher risks of death, Mr. Pesavento said.

Physicians’ attitudes and education: In a separate study, 16 urologists and four primary care physicians who were undergoing surgical training in urology were interviewed about their attitudes regarding end-of-life care for men dying of prostate cancer. They viewed current end-of-life care as shoddily organized and poorly integrated, and said that ideal outcomes should be defined by patients’ own values and preferences, Dr. Jonathan Bergman and his associates reported in a poster presentation.

The physicians said that, ideally, a multidisciplinary team would care for dying patients, but respondents varied in the degree to which they saw themselves participating, reported Dr. Bergman of the University of California, Los Angeles.

The findings suggest that physician education about end-of-life care needs improvement, and that clinicians should be guided to deliver end-of-life care that is patient-centered and congruent with patients’ values, he said.

Dying in the hospital: Among 2,621 patients with solid tumors, those who had contact with a specialist palliative care team more than a month before their deaths were less likely to die in the hospital (16%) than were patients who had later or no contact with the team (20%), J. Brian Cassel, Ph.D., reported in a poster presentation.

Dr. Cassel and his associates analyzed claims data on the last 6 months of life for 3,128 adults with cancer who had at least one contact with the Virginia Commonwealth University cancer center in Richmond between January 2009 and July 2011. The data set included patients who had solid tumors, underwent bone marrow transfer, or had other hematologic malignancies.

The findings provided a snapshot of end-of-life care at the university, where 32% of the cancer patients were admitted to the hospital within their last 30 days of life, 19% had at least one readmission during their last 6 months of life, and 15% died in the hospital. Chemotherapy was given to 11% in their last month of life, and to 7% in their last 2 weeks of life, said Dr. Cassel of the university.

The specialist palliative care team made contact with 28% of patients a median of 6-10 days before the death of patients with bone marrow transfer or other nonhematologic malignancies and a median of 25 days before the death of patients with solid tumors.

Chemotherapy at the end of life: Patients with hematologic malignancies were significantly more likely to get chemotherapy in the last 30 days of life (38%) compared with patients with solid tumors (8%), Dr. Alma Rodriguez and her associates reported in a poster presentation.

The investigators reviewed data on 7,399 patients who received care for a solid tumor or hematological malignancy at the University of Texas M.D. Anderson Cancer Center, Houston, and died between December 2010 and May 2012. Overall, 14% of patients received chemotherapy within the last 30 days of life.

Of the 1,262 patients who died in the hospital, 44% received chemotherapy within the last 30 days of life, compared with 7% of the 6,137 patients who died in other locations, reported Dr. Rodriguez, professor of medicine at the cancer center.

Chemotherapy within the last 30 days of life was 3 times more likely in patients with metastatic solid tumors, 14 times more likely in patients with nonrelapsed hematologic malignancy, and 36 times more likely in patients with historical or current relapse of hematologic malignancy.

Patients 65 years or older were 38% less likely than were younger patients to get chemotherapy within the last 30 days of life. Patients with one or more comorbidity (most frequently heart failure and coronary artery diseases) were 28% less likely to get chemotherapy within the last 30 days of life as compared with patients without comorbidities.

"As oncologists, we must communicate clearly with our patients about realistic goals of treatment and the likelihood of life-threatening complications of chemotherapy," Dr. Rodriguez said in the poster.

Outpatient palliative care: Dr. Kavitha Ramchandran and her associates at Stanford (Calif.) University studied their system’s electronic medical records to look at the use of palliative care in outpatient clinics from January through September 2012. The number of palliative care contacts with outpatient clinic patients increased from 10 in January to 45 in September. The number of physicians referring outpatients to palliative care increased from 6 in January to 21 in September, she said in a poster presentation.

More than 65% of patients who were referred for palliative care were younger than 65 years, said Dr. Ramchandran of the university. Most patients had only one visit with palliative care (41%) or two visits (23%).

The findings suggest that outpatient palliative care is a growing specialty, she suggested. The data are not mature enough to assess any impact on the quality of end-of-life care or on the efficiency of care, she added.

Dr. Chen and Mr. Pesavento reported having no financial disclosures. Dr. Ramchandran’s study was funded in part by the Stanford Corporate Partners Fund and by various Stanford departments. No financial disclosures were available for the other presenters.

From Hollywood to Washington, care at the end of life increasingly is part of the national conversation.

As more than 70 million baby boomers (Americans born between 1946 and 1964) approach the end of their life spans, the cultural, clinical and socioeconomic impacts of end-of-life care have become high-profile topics. The French film "Amour," which depicts the challenges faced by an octogenarian couple after the wife has a series of strokes, has received an Academy Award Best Picture nomination. The Institute of Medicine will convene a panel of experts on Feb. 22-24 in Washington to examine the state of end-of-life care. The goal of the IOM Committee on Transforming End of Life Care is to produce a consensus report by 2014 to address end-of-life care. "Coordinated, expert, compassionate care for people dying from chronic diseases continues to challenge the American health care system," according to the IOM’s online announcement of the meeting.

In addition, the Coalition to Transform Advanced Care is hosting a National Summit on Advanced Illness Care on Jan. 29-30 in Washington. The Coalition includes a wide range of constituencies including the IOM, the American Heart Association, the American Academy of Hospice and Palliative Medicine, and the American Geriatrics Society, as well as insurers, health systems, patient advocacy groups, and others.

As policy issues are discussed and begin to take shape, outcomes research focused on end-of-life care will increasingly gain importance. In the area of cancer care, here are some of the highlights of such research presented at a Quality Care Symposium sponsored by the American Society of Clinical Oncology in December 2012 in San Diego.

Palliative care teams: A palliative care team formed by Dr. Allen R. Chen and his associates at Johns Hopkins’s comprehensive cancer center helped change patient and family decisions regarding end-of-life care during a 4-year period and decreased use of intensive or invasive procedures in the last 6 months of life.

The team offered inpatient and clinic consultations and didactic sessions to physicians to improve how they discuss end-of-life issues with patients, plus support for family meetings to discuss and document the goals of care, said Dr. Chen, associate professor of oncology and pediatrics at Johns Hopkins University, Baltimore.

Of the 525 oncology patients who died in the cancer center while hospitalized from 2008 through 2011, the proportion who chose to have do-not-resuscitate (DNR) orders, withdrew ICU support, or chose comfort care instead of more aggressive care increased from 81% to 95% over the course of the 4 years, a statistically significant difference, he reported.

The rate of ICU care during patients’ final hospitalizations did not change significantly, but the proportion of patients who were put on mechanical ventilation for more than 14 days decreased significantly from 10% to 5%. These earlier withdrawals of care did not increase the risk of death, Dr. Chen said – the rate of survival to discharge from the oncology ICU did not change significantly.

The investigators now are looking for ways to minimize ICU visits at the end of life, he said. The presence of advanced cancer, being on a cardiac monitor, or needing supplemental oxygen foreshadowed critical illness in patients in the study. "We want to facilitate the difficult discussion" about end-of-life care choices "before critical care is needed," he said. So far, their efforts haven’t resulted in decreased use of ICU services at the end of life.

Minimizing surgical risks: One of the first comprehensive analyses of surgical outcomes in patients with disseminated cancer found that the risk of death increases greatly with emergency surgery.

John Pesavento, a medical student at Creighton University, Omaha, Neb., and his associates analyzed preoperative and postoperative data from the American College of Surgeon’s National Surgical Quality Improvement Program database on move than 147,000 patients who underwent surgical procedures between 2005 and 2008.

Eight of the 10 most common procedures resulted in significantly higher 30-day mortality rates in the cancer patients as compared with the same surgeries in patients who did not have disseminated cancer.

Comparing patients with and without disseminated cancer, 30-day mortality rates were 21% and 15%, respectively, after exploration of the abdomen, 15% and 9% after removal of the small bowel, 11% and 6% after colon removal, 11% and 5% after colostomy, 10% and 5% after partial removal of the colon, 10% and 0.5% after cholecystectomy, 1.8% and 0.9% after repair of a bowel opening, and 1% and 0.1% after mastectomy, he reported. The most common operations in patients with disseminated cancer were partial removal of the colon (in 11%), partial removal of the liver (9%), partial removal of the intestine (5%), and abdominal exploration (5%), he reported in a poster presentation.

When done as emergency procedures, however, 7 of the top 10 surgeries led to significantly higher 30-day mortality rates for disseminated cancer patients. Death rates in patients with disseminated cancer were 44% for emergency surgery and 12% for nonemergent surgery to explore the abdomen; the respective rates were 33% and 6% after bowel-to-bowel fusion, 31% and 4% after removal of the colon, 28% and 10% after removal of the small intestine, 23% and 5% after cholecystectomy, 22% and 7% after partial removal of the colon, and 19% and 9% after colostomy.

The findings should help physicians counsel their patients with disseminated cancer to help them decide whether it’s worth undergoing surgery – especially emergency surgery – given the higher risks of death, Mr. Pesavento said.

Physicians’ attitudes and education: In a separate study, 16 urologists and four primary care physicians who were undergoing surgical training in urology were interviewed about their attitudes regarding end-of-life care for men dying of prostate cancer. They viewed current end-of-life care as shoddily organized and poorly integrated, and said that ideal outcomes should be defined by patients’ own values and preferences, Dr. Jonathan Bergman and his associates reported in a poster presentation.

The physicians said that, ideally, a multidisciplinary team would care for dying patients, but respondents varied in the degree to which they saw themselves participating, reported Dr. Bergman of the University of California, Los Angeles.

The findings suggest that physician education about end-of-life care needs improvement, and that clinicians should be guided to deliver end-of-life care that is patient-centered and congruent with patients’ values, he said.

Dying in the hospital: Among 2,621 patients with solid tumors, those who had contact with a specialist palliative care team more than a month before their deaths were less likely to die in the hospital (16%) than were patients who had later or no contact with the team (20%), J. Brian Cassel, Ph.D., reported in a poster presentation.

Dr. Cassel and his associates analyzed claims data on the last 6 months of life for 3,128 adults with cancer who had at least one contact with the Virginia Commonwealth University cancer center in Richmond between January 2009 and July 2011. The data set included patients who had solid tumors, underwent bone marrow transfer, or had other hematologic malignancies.

The findings provided a snapshot of end-of-life care at the university, where 32% of the cancer patients were admitted to the hospital within their last 30 days of life, 19% had at least one readmission during their last 6 months of life, and 15% died in the hospital. Chemotherapy was given to 11% in their last month of life, and to 7% in their last 2 weeks of life, said Dr. Cassel of the university.

The specialist palliative care team made contact with 28% of patients a median of 6-10 days before the death of patients with bone marrow transfer or other nonhematologic malignancies and a median of 25 days before the death of patients with solid tumors.

Chemotherapy at the end of life: Patients with hematologic malignancies were significantly more likely to get chemotherapy in the last 30 days of life (38%) compared with patients with solid tumors (8%), Dr. Alma Rodriguez and her associates reported in a poster presentation.

The investigators reviewed data on 7,399 patients who received care for a solid tumor or hematological malignancy at the University of Texas M.D. Anderson Cancer Center, Houston, and died between December 2010 and May 2012. Overall, 14% of patients received chemotherapy within the last 30 days of life.

Of the 1,262 patients who died in the hospital, 44% received chemotherapy within the last 30 days of life, compared with 7% of the 6,137 patients who died in other locations, reported Dr. Rodriguez, professor of medicine at the cancer center.

Chemotherapy within the last 30 days of life was 3 times more likely in patients with metastatic solid tumors, 14 times more likely in patients with nonrelapsed hematologic malignancy, and 36 times more likely in patients with historical or current relapse of hematologic malignancy.

Patients 65 years or older were 38% less likely than were younger patients to get chemotherapy within the last 30 days of life. Patients with one or more comorbidity (most frequently heart failure and coronary artery diseases) were 28% less likely to get chemotherapy within the last 30 days of life as compared with patients without comorbidities.

"As oncologists, we must communicate clearly with our patients about realistic goals of treatment and the likelihood of life-threatening complications of chemotherapy," Dr. Rodriguez said in the poster.

Outpatient palliative care: Dr. Kavitha Ramchandran and her associates at Stanford (Calif.) University studied their system’s electronic medical records to look at the use of palliative care in outpatient clinics from January through September 2012. The number of palliative care contacts with outpatient clinic patients increased from 10 in January to 45 in September. The number of physicians referring outpatients to palliative care increased from 6 in January to 21 in September, she said in a poster presentation.

More than 65% of patients who were referred for palliative care were younger than 65 years, said Dr. Ramchandran of the university. Most patients had only one visit with palliative care (41%) or two visits (23%).

The findings suggest that outpatient palliative care is a growing specialty, she suggested. The data are not mature enough to assess any impact on the quality of end-of-life care or on the efficiency of care, she added.

Dr. Chen and Mr. Pesavento reported having no financial disclosures. Dr. Ramchandran’s study was funded in part by the Stanford Corporate Partners Fund and by various Stanford departments. No financial disclosures were available for the other presenters.