Lurching Painfully Toward Meaningful Palliative Care

The history of palliative care in the United States could hardly be characterized as pain free. In the roughly 30 years since its introduction at a handful of U.S. institutions, it has been underfunded, ill focused, and widely misunderstood, not only by the patients whom it is intended to help, but also by the professionals who would seemingly be in the best position to relieve their suffering.

Although most cancer hospitals now host inpatient consultative palliative care teams, for example, they are summoned, on average, a week before a patient’s death, according to a recent survey (JAMA 2010:303:1054-61). That’s hardly aligned with the concept of integrating palliation – attention to relieving pain and suffering – from the day a patient is diagnosed with a serious disease.

Instead, the term palliative care remains, for many, confused with hospice care and is relegated to the same taboo topic list.

In fact, the survey published in JAMA demonstrated that few cancer centers specifically integrate palliation in outpatient clinics throughout a patient’s treatment course, or make it the focus of training and research.

Is it time to do just that?

A provisional clinical opinion issued earlier this year by the American Society of Clinical Oncology (ASCO) highlighted "strong evidence" of a survival benefit for patients with metastatic non-small cell lung cancer who received palliative care at the time of initial diagnosis, based on a powerful and widely publicized phase III randomized controlled trial (J. Clin. Oncol. 2012:30:880-7).

ASCO’s expert consensus panel overrode the reservations of the Supportive and Palliative Care Editorial Board of the National Cancer Institute’s Physician Data Query cancer database, and argued that palliative care should be considered "early in the course of illness for any [emphasis added] patient with metastatic cancer and/or high symptom burden."

To be sure, the evidence is scanty for just how that objective should be carried out.

And no wonder, considering that less than 1% of the National Institutes of Health budget is devoted to palliative care, despite the potential of such care to improve quality of life, to reduce undignified and futile interventions, to save billions of dollars, and perhaps even to extend overall survival (not to mention survival days that are worth living).

Still, the ASCO panel bravely provided a thoughtful and practical "working list of components" to be considered and studied, which included "a frank discussion of the prognosis (with a reasonable forecast of survival) and curability; explicit discussion of the medically appropriate goals of treatment; use of a standardized symptom assessment tool ... with symptom management based on the answers; screening for distress ... psychosocial assessment and support; and involvement of hospice early in the remaining lifetime of patients with a life-ending illness..."

Although I welcome this list, I wonder why the same approach should not be extended to all patients who are diagnosed with cancer and other life-threatening or life-altering diseases, and not only to those with metastatic cancer.

Evidently, some patients agree, including blogger Hollye Jacobs, a registered nurse who was recently diagnosed with breast cancer and who specifically sought out a palliative care specialist when she assembled her oncology treatment team.

"Whoa. Whoa. Whoa," she wrote to followers of her blog, The Silver Pen. "Are you wondering, ‘Why palliative care?’ Most people hear the phrase ‘palliative care’ and think ‘buy the plot ... she must be dying.’

"We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief," she wrote.

Ms. Jacobs, who broadly defined symptomatic relief to include fatigue, anxiety, shortness of breath, depression, nausea, and constipation, also turned to a palliative care specialist to coordinate her care and help her maintain a clear focus on the quality of her life.

In a recent letter to the editor in the Journal of Clinical Oncology, three medical oncologists argue that the best primary palliative care providers are oncologists like themselves. The creation of a new consultative specialty in palliation, they worry, might compromise the physician-patient relationship and have an unintended "fragmenting effect ... [potentially] increasing the complexity of care and, in some health care environments, actually increasing costs" (J. Clin. Oncol. 2012:30:2801-2).

"In a disease such as ovarian cancer, in which relapsed patients can live for years, and lung cancer, which has an improved survival with newer therapeutics, the physician-patient relationship is a rich and dynamic one because both the doctor and patient confront the trauma of multiple episodes of disease progression and the difficult decision to stop chemotherapy and transition to hospice care," wrote Dr. Mark A. Hoffman of Long Island Jewish Medical Center, and his associates.

"Overdelegating palliative care ... would deprive us of the opportunity to participate in the richest dimensions of the care of our patients," they continued.

What a refreshing position, and one that I think offers promise as a launching pad for discussion.

Informed by research, we’ll discover over time how best to deliver palliative care, when, and by whom. The important thing is that it happens, and soon, before more patients needlessly suffer in a blind and sometimes futile pursuit of "the cure."

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

The history of palliative care in the United States could hardly be characterized as pain free. In the roughly 30 years since its introduction at a handful of U.S. institutions, it has been underfunded, ill focused, and widely misunderstood, not only by the patients whom it is intended to help, but also by the professionals who would seemingly be in the best position to relieve their suffering.

Although most cancer hospitals now host inpatient consultative palliative care teams, for example, they are summoned, on average, a week before a patient’s death, according to a recent survey (JAMA 2010:303:1054-61). That’s hardly aligned with the concept of integrating palliation – attention to relieving pain and suffering – from the day a patient is diagnosed with a serious disease.

Instead, the term palliative care remains, for many, confused with hospice care and is relegated to the same taboo topic list.

In fact, the survey published in JAMA demonstrated that few cancer centers specifically integrate palliation in outpatient clinics throughout a patient’s treatment course, or make it the focus of training and research.

Is it time to do just that?

A provisional clinical opinion issued earlier this year by the American Society of Clinical Oncology (ASCO) highlighted "strong evidence" of a survival benefit for patients with metastatic non-small cell lung cancer who received palliative care at the time of initial diagnosis, based on a powerful and widely publicized phase III randomized controlled trial (J. Clin. Oncol. 2012:30:880-7).

ASCO’s expert consensus panel overrode the reservations of the Supportive and Palliative Care Editorial Board of the National Cancer Institute’s Physician Data Query cancer database, and argued that palliative care should be considered "early in the course of illness for any [emphasis added] patient with metastatic cancer and/or high symptom burden."

To be sure, the evidence is scanty for just how that objective should be carried out.

And no wonder, considering that less than 1% of the National Institutes of Health budget is devoted to palliative care, despite the potential of such care to improve quality of life, to reduce undignified and futile interventions, to save billions of dollars, and perhaps even to extend overall survival (not to mention survival days that are worth living).

Still, the ASCO panel bravely provided a thoughtful and practical "working list of components" to be considered and studied, which included "a frank discussion of the prognosis (with a reasonable forecast of survival) and curability; explicit discussion of the medically appropriate goals of treatment; use of a standardized symptom assessment tool ... with symptom management based on the answers; screening for distress ... psychosocial assessment and support; and involvement of hospice early in the remaining lifetime of patients with a life-ending illness..."

Although I welcome this list, I wonder why the same approach should not be extended to all patients who are diagnosed with cancer and other life-threatening or life-altering diseases, and not only to those with metastatic cancer.

Evidently, some patients agree, including blogger Hollye Jacobs, a registered nurse who was recently diagnosed with breast cancer and who specifically sought out a palliative care specialist when she assembled her oncology treatment team.

"Whoa. Whoa. Whoa," she wrote to followers of her blog, The Silver Pen. "Are you wondering, ‘Why palliative care?’ Most people hear the phrase ‘palliative care’ and think ‘buy the plot ... she must be dying.’

"We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief," she wrote.

Ms. Jacobs, who broadly defined symptomatic relief to include fatigue, anxiety, shortness of breath, depression, nausea, and constipation, also turned to a palliative care specialist to coordinate her care and help her maintain a clear focus on the quality of her life.

In a recent letter to the editor in the Journal of Clinical Oncology, three medical oncologists argue that the best primary palliative care providers are oncologists like themselves. The creation of a new consultative specialty in palliation, they worry, might compromise the physician-patient relationship and have an unintended "fragmenting effect ... [potentially] increasing the complexity of care and, in some health care environments, actually increasing costs" (J. Clin. Oncol. 2012:30:2801-2).

"In a disease such as ovarian cancer, in which relapsed patients can live for years, and lung cancer, which has an improved survival with newer therapeutics, the physician-patient relationship is a rich and dynamic one because both the doctor and patient confront the trauma of multiple episodes of disease progression and the difficult decision to stop chemotherapy and transition to hospice care," wrote Dr. Mark A. Hoffman of Long Island Jewish Medical Center, and his associates.

"Overdelegating palliative care ... would deprive us of the opportunity to participate in the richest dimensions of the care of our patients," they continued.

What a refreshing position, and one that I think offers promise as a launching pad for discussion.

Informed by research, we’ll discover over time how best to deliver palliative care, when, and by whom. The important thing is that it happens, and soon, before more patients needlessly suffer in a blind and sometimes futile pursuit of "the cure."

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

The history of palliative care in the United States could hardly be characterized as pain free. In the roughly 30 years since its introduction at a handful of U.S. institutions, it has been underfunded, ill focused, and widely misunderstood, not only by the patients whom it is intended to help, but also by the professionals who would seemingly be in the best position to relieve their suffering.

Although most cancer hospitals now host inpatient consultative palliative care teams, for example, they are summoned, on average, a week before a patient’s death, according to a recent survey (JAMA 2010:303:1054-61). That’s hardly aligned with the concept of integrating palliation – attention to relieving pain and suffering – from the day a patient is diagnosed with a serious disease.

Instead, the term palliative care remains, for many, confused with hospice care and is relegated to the same taboo topic list.

In fact, the survey published in JAMA demonstrated that few cancer centers specifically integrate palliation in outpatient clinics throughout a patient’s treatment course, or make it the focus of training and research.

Is it time to do just that?

A provisional clinical opinion issued earlier this year by the American Society of Clinical Oncology (ASCO) highlighted "strong evidence" of a survival benefit for patients with metastatic non-small cell lung cancer who received palliative care at the time of initial diagnosis, based on a powerful and widely publicized phase III randomized controlled trial (J. Clin. Oncol. 2012:30:880-7).

ASCO’s expert consensus panel overrode the reservations of the Supportive and Palliative Care Editorial Board of the National Cancer Institute’s Physician Data Query cancer database, and argued that palliative care should be considered "early in the course of illness for any [emphasis added] patient with metastatic cancer and/or high symptom burden."

To be sure, the evidence is scanty for just how that objective should be carried out.

And no wonder, considering that less than 1% of the National Institutes of Health budget is devoted to palliative care, despite the potential of such care to improve quality of life, to reduce undignified and futile interventions, to save billions of dollars, and perhaps even to extend overall survival (not to mention survival days that are worth living).

Still, the ASCO panel bravely provided a thoughtful and practical "working list of components" to be considered and studied, which included "a frank discussion of the prognosis (with a reasonable forecast of survival) and curability; explicit discussion of the medically appropriate goals of treatment; use of a standardized symptom assessment tool ... with symptom management based on the answers; screening for distress ... psychosocial assessment and support; and involvement of hospice early in the remaining lifetime of patients with a life-ending illness..."

Although I welcome this list, I wonder why the same approach should not be extended to all patients who are diagnosed with cancer and other life-threatening or life-altering diseases, and not only to those with metastatic cancer.

Evidently, some patients agree, including blogger Hollye Jacobs, a registered nurse who was recently diagnosed with breast cancer and who specifically sought out a palliative care specialist when she assembled her oncology treatment team.

"Whoa. Whoa. Whoa," she wrote to followers of her blog, The Silver Pen. "Are you wondering, ‘Why palliative care?’ Most people hear the phrase ‘palliative care’ and think ‘buy the plot ... she must be dying.’

"We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief," she wrote.

Ms. Jacobs, who broadly defined symptomatic relief to include fatigue, anxiety, shortness of breath, depression, nausea, and constipation, also turned to a palliative care specialist to coordinate her care and help her maintain a clear focus on the quality of her life.

In a recent letter to the editor in the Journal of Clinical Oncology, three medical oncologists argue that the best primary palliative care providers are oncologists like themselves. The creation of a new consultative specialty in palliation, they worry, might compromise the physician-patient relationship and have an unintended "fragmenting effect ... [potentially] increasing the complexity of care and, in some health care environments, actually increasing costs" (J. Clin. Oncol. 2012:30:2801-2).

"In a disease such as ovarian cancer, in which relapsed patients can live for years, and lung cancer, which has an improved survival with newer therapeutics, the physician-patient relationship is a rich and dynamic one because both the doctor and patient confront the trauma of multiple episodes of disease progression and the difficult decision to stop chemotherapy and transition to hospice care," wrote Dr. Mark A. Hoffman of Long Island Jewish Medical Center, and his associates.

"Overdelegating palliative care ... would deprive us of the opportunity to participate in the richest dimensions of the care of our patients," they continued.

What a refreshing position, and one that I think offers promise as a launching pad for discussion.

Informed by research, we’ll discover over time how best to deliver palliative care, when, and by whom. The important thing is that it happens, and soon, before more patients needlessly suffer in a blind and sometimes futile pursuit of "the cure."

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