Current concepts
_______________________
Prognostication of survival in hospice care Robert B. Enck, MD
The question of accurate prognosis has plagued hospice programs since the Medicare hospice benefit was enacted in 1982. The legislation provides Medicare coverage for terminally ill patients who are certified by physicians to have a prognosis of six-months or less to live. An inaccurate prognosis for survival, i.e., the patient lives more than six-months, results in a financial drain on the hospice. Shorter survivals in the range of days, which are commonly encountered, deprivethe patient and family of the true benefits of a hospice program, and are also a fmancial drain for other reasons. Indeed, as part of a national survey of non-par-
ticipating hospices, GAO indicated that one of the main concerns that led them to choose not to participate in Medicare wasthe factthatthe language required in hospice certification of terminal illnesses related to the certainty of the physician’s prognosis of death.’ As a practical matter, many patients and families need to have someestimation of survival so the patient can get his affairs in order and allow appropriate time for good-byes. Several papers published over the past few years2-7 have investigated various prognostic factors and are the subject of this review. In 1980, Yates et a12 evaluated patients with advanced cancer using the Kamofsky Performance Status measuremenL In 1948, Karnofsky and Burchenal described a numericalscale for quantifying patient’s functional status. This description, now known as the Karnofsky Performance Status Scale (KPS), ranges from 0 to 100 with the following breakdown: 100 normal, no complaints, no evidence of disease; 90— ability to carry on normal activity, minor signs or symptoms of disease; 80— normal activity with effort, some signs or symptoms of disease; 70 cares for self, unable to carry on normal activity or to do active work; 60— requires occasional assistance, but is able to care for most ofhis needs; 50— requires considerable as—
—
Robert E. Enck, MD, is past president of the Association of Community Cancer Centers, Columbus, Ohio.
The American Journal of Hospice & Palliative Care, March/April 1990 Downloaded from ajh.sagepub.com at UCSF LIBRARY & CKM on March 14, 2015
sistance and frequent medical care; 40 disabled, requires special care and assistance; 30 severely disabled, hospitalization is indicated, although death not imminent; 20— hospitalization necessary, very sick, active supportive treatment necessary; 10 moribund, fatal processes, progressing rapidly; 0—dead. Yates eta12 studied 104 patients with advanced cancer consisting of 42 female patients and 62 male patients with an average age of 57 years. KPS was collected for each patient and was —
—
—
The question of accurateprognosis has plagued hospice programs since the Medicare hospice benefit was enacted in 1982. thencompared to survival in these 104 patients. It was clear that a low KPS score was strongly correlated with death within a relatively short time. Only one of the patients with a KPS scoreless than50 survived longer than sixmonths. However, a high KPS score was not predictive of long-term survival because many ofthe patients with high initial scores died quickly. In ad-
11
dition, patient deterioration with subsequent death within a few months was predicted, to a limited degree, by a rapidly dropping KPS.
It was clear that a low KPS score was strongly correlated with death within a relatively short time. In 1985, Evans and McCarthy3 reported the results of their prognostic studies on 42 terminally ill patients. The six members of a terminal care support team in a London health district reported both the upper and the lower estimates of prognosis, in days, on 42 patients during 149 visits in addition to assessing the KPS. Using the Kamofsky score, the authors foundthat a score of 50 had a predicted survival of 24 days and those with scores of 50 or less had survivals ranging between three and 70 days. Of interest, justover half ofthe actual survivals were within the estimate limits which tended to be overly optimistic. Evans and McCarthy3 concluded that the Kamofsky score gave a closer correlation with actual survivals than estimates provided by members of the terminal care support team. In 1988 and 1989 Forster and Lynn published two papers4~discussing prediction of survival for hospice patients. In their first paper,4 the life span of 108 consecutive applications for inpatient hospice care were estimated independently by two oncologists, a general internist, an oncology nurse, and a hospice socialworker. The survival estimations were based on data in a 10-page multi-disciplinaryapplication packet. The actual median survival of the 108 patients was 3.5 ± 12.4 weeks. Over one-fourth of the patients diedwithin one week of apply-
ing for hospice care, and only a small proportionlived beyond 12 weeks. The mean age of the sample was 66.2 years. Slightly more than half were female and approximately the same proportion were white. The most common major symptoms and signs at the time of application were ambulation difficulties, anemia, and pain. The survival predictions of the five member groups exceeded the actual survival by an average of 3.4 weeks. The authors concluded that this imprecision in expert estimation of life span poses substantial problems for hospice programs and policy makers.
However, a high KPS score was notpredictive of long-term survival because many of the patients with high initial scores died quickly. In a related paper in the American Journal of Hospice Care, Forster and Lynn5 extended their prior study. The authors collected data on 48 objective patientvariables. They were particularly interested in defining objective variables that could distinguish between patients who were likely to die within either three or six months and those who were likely to live longer. These variables included: primary neoplasm, hormone treatment, congestive heart failure, pain, disoriented, lack of funds, Kamofsky Score, respiratory, sodium, admitted to hospice, not admitted to hospice, and male and female. The Kamofsky Score and indication of weakness were the only two variables by logistic regression that contributed substantially to the probability ofdying within three months. Using the sixmonth survival, there was a correlation
between females and those who had hormone treatments indicating a high probability of living beyond sixmonths. Of interest, Forster and Lynn suggested, based upon this survival analysis and their research, that definable groups of applicants to hospice experienced different survival patterns. Also, they felt that worse life expectancy was found among those with primary neoplasms involving the lung and colon, with disorientation, without congestive heartfailure orhormone treatment and with low sodium levels. Furthermore, the authors found that accurate prognostication of survival takes more precise knowledge than previously appreciated, and that accuracy may be too limited for reliable forecasts in individual patients. In 1988, Reubens et al6 reported their results, as part of the National Hospice Study, on clinical symptoms and length of survival in patients with terminal cancer. The authors examined the correlation of 14 clinical symptoms with survival. The symptoms examined were: nausea, dry mouth, problems eating or anorexia, weight loss, difficulty swallowing, constipation, dizziness, fever, shortness of breath, diarrhea, hemorrhaging, bone
The authors concluded that this imprecision in expert estimation of life span poses substantial problems for hospice programs and policy makers. pain, severe pain, and moderate or severe disorientation. Performance status was again measured using the KPS scale.
The American Journal of Hospice & Palliative Care, March/April 1990 Downloaded from ajh.sagepub.com at UCSF LIBRARY & CKM on March 14, 2015
Letters The sample frame was obtained from the National Hospice Study data set. Fifty-three percent of the study patients were female. The average age was 67 years. The KPS was assessed by trained interviewers on the basis of their observation of thepatients.
Furthermore, the authors found that accurate prognostication of survival takes more precise knowledge than previously appreciated, andthat accuracy may be too limitedfor reliable forecasts in individualpatients. The authors found that the performance status was the most important clinical factor in estimating survival time. Of the 14 clinical symptoms assessed, five were found to have independent prognostic value, namely, shormess of breath, problems eating, dry mouth, trouble swallowing, and weight loss. Reuben et al6 noted that their prediction rule appeared to be most valuable in estimating length of survival for patients in the midlevel (KPS 30-40) and high-level (KPS 50) performance status categories. In their study, 67 percent of the patients were at midievel KPS. Predicted 50 percentsurvival ranged from 36 days for patients with all five symptoms to 115 days for patients with none of the symptoms. Similarly, predicted50 percent survival forthe 17.5 percent ofthe patients in the highest KPS category was 54 days if all five symptoms were present and 172 days if none were present. For patients in the lowest KPS category (10-20), survival was poor regardless of number of symptoms present. Predicted 50 percent-survival
was 16 days if all five symptoms were present and 53 days if none of the five symptoms were present. Thus, they concluded the value of the model may be less in the severely dysfunctional terminally ifi patient. Finally, Higginsonet a17 again emphasized the importance of the Karnofsky index as a predictor of survival in terminal care. Intheir patients, there was a clear trend of shorter survival with reducing mobility. When KPS ratings fell to 50 or below, 93 percent died within three months and 99 percent with six months. In summary, basedon this reviewof the literature, the following conclusions are offered: • Prognostication ofsurvival for the terminally ifi cancerpatient is an inexact science. • Utilization of a performance scale such as the Kamofsky scale maybehelpful both inthe initial as well as the ongoing assessmentof prognosisLI References 1. GAO/HRD-89-1l1 Hospice Participation in Medicare, Executive Summary 2. Yates JW~Chalmers B, MeKegney FP: Evaluation of patients with advanced cancer using the Karnofsky performance status. Cancar 1980;45:2220-2224 3. Evans C, McCarthy M: Prognostic uncertainty in terminal care: Can the Kamofsky index help? Lancet 1985;1:1204-1206 4. Forster LE, Lynn J: Predicting life span for applicants to inpatienthospice.ArchIntern Med 1988;148:2540-2543 5. Forster LE, Lynn J: The use of physiologic measures and demographic variables to predict longevity among inpatient hospice applicants. Am J Hospice Care 1989;6(2):31-34 6. Reuben DB, Mor V. Hiris J: Clinical symptoms and length of survival in patients with terminal cancer. Arch Intern Med 1988;148:1586-1591 7. Higginsonl, WadeA, McCarthyM: Financial help for terminally ill patients. Lancet 1990;1:172
The American Journal of Hospice & Palliative Care,March/April 1990 Downloaded from ajh.sagepub.com at UCSF LIBRARY & CKM on March 14, 2015
(Continued from page 10)
The final component of grief recovery involves moving beyond loss through dealing with anniversary dates, attempting new behaviors, and assisting others through the formation of small support groups. There are an array of self-help books available today. I believe The Grief Recovery Handbook is one of those books which can truly have an impact on individuals and their grief reconciliation. Daniel Klein, PhD, MSW Northern Illinois University DeKaib, Illinois The GriefRecovery Handbook, John W.
James and Frank Cherry Harper and Row, 1988, $15.95, 175 pages Editor note: This letter was published in the September/October 1990 issue, but the author and publisher information were omitted. We are sorry for the inconvenience. Editor’s notes
We regret that Susan Silver’s contribution to the editorial in the January/February 1990 issue, “A rationale for improving hospice reimbursement” was not recognized. Susan Silver, the journal’s book review editor provided the rationale, the bulleted items. We thank her very much for providing us with this assistance with our editorial.
Due to an editing error, the meaning of a sentence in “Cancer pain in children” by Porter Storey, MD in the January/February 1990 issue was changed. On page 12, atthe bottom of the first column, “In order to raise intracranial pressure for spinal cord compression...” should read, “In order to control raised intracranial pressure for spinal cord compression...” We deeply regret this error and appreciate Dr. Storey bringing it to our attention. In order to ensure the accuracy of articles appearing in the jourani, proofs are supplied to the authors for checking,whenever possible. In order to ensurethe highest possible standards of accuracy, we urge readers and authors to bring any errors they find to our attention, particularly ones like
the one mentioned above found by Dr. Storey, which alter the intent of the author.
13
_______________________
Prognostication of survival in hospice care Robert B. Enck, MD
The question of accurate prognosis has plagued hospice programs since the Medicare hospice benefit was enacted in 1982. The legislation provides Medicare coverage for terminally ill patients who are certified by physicians to have a prognosis of six-months or less to live. An inaccurate prognosis for survival, i.e., the patient lives more than six-months, results in a financial drain on the hospice. Shorter survivals in the range of days, which are commonly encountered, deprivethe patient and family of the true benefits of a hospice program, and are also a fmancial drain for other reasons. Indeed, as part of a national survey of non-par-
ticipating hospices, GAO indicated that one of the main concerns that led them to choose not to participate in Medicare wasthe factthatthe language required in hospice certification of terminal illnesses related to the certainty of the physician’s prognosis of death.’ As a practical matter, many patients and families need to have someestimation of survival so the patient can get his affairs in order and allow appropriate time for good-byes. Several papers published over the past few years2-7 have investigated various prognostic factors and are the subject of this review. In 1980, Yates et a12 evaluated patients with advanced cancer using the Kamofsky Performance Status measuremenL In 1948, Karnofsky and Burchenal described a numericalscale for quantifying patient’s functional status. This description, now known as the Karnofsky Performance Status Scale (KPS), ranges from 0 to 100 with the following breakdown: 100 normal, no complaints, no evidence of disease; 90— ability to carry on normal activity, minor signs or symptoms of disease; 80— normal activity with effort, some signs or symptoms of disease; 70 cares for self, unable to carry on normal activity or to do active work; 60— requires occasional assistance, but is able to care for most ofhis needs; 50— requires considerable as—
—
Robert E. Enck, MD, is past president of the Association of Community Cancer Centers, Columbus, Ohio.
The American Journal of Hospice & Palliative Care, March/April 1990 Downloaded from ajh.sagepub.com at UCSF LIBRARY & CKM on March 14, 2015
sistance and frequent medical care; 40 disabled, requires special care and assistance; 30 severely disabled, hospitalization is indicated, although death not imminent; 20— hospitalization necessary, very sick, active supportive treatment necessary; 10 moribund, fatal processes, progressing rapidly; 0—dead. Yates eta12 studied 104 patients with advanced cancer consisting of 42 female patients and 62 male patients with an average age of 57 years. KPS was collected for each patient and was —
—
—
The question of accurateprognosis has plagued hospice programs since the Medicare hospice benefit was enacted in 1982. thencompared to survival in these 104 patients. It was clear that a low KPS score was strongly correlated with death within a relatively short time. Only one of the patients with a KPS scoreless than50 survived longer than sixmonths. However, a high KPS score was not predictive of long-term survival because many ofthe patients with high initial scores died quickly. In ad-
11
dition, patient deterioration with subsequent death within a few months was predicted, to a limited degree, by a rapidly dropping KPS.
It was clear that a low KPS score was strongly correlated with death within a relatively short time. In 1985, Evans and McCarthy3 reported the results of their prognostic studies on 42 terminally ill patients. The six members of a terminal care support team in a London health district reported both the upper and the lower estimates of prognosis, in days, on 42 patients during 149 visits in addition to assessing the KPS. Using the Kamofsky score, the authors foundthat a score of 50 had a predicted survival of 24 days and those with scores of 50 or less had survivals ranging between three and 70 days. Of interest, justover half ofthe actual survivals were within the estimate limits which tended to be overly optimistic. Evans and McCarthy3 concluded that the Kamofsky score gave a closer correlation with actual survivals than estimates provided by members of the terminal care support team. In 1988 and 1989 Forster and Lynn published two papers4~discussing prediction of survival for hospice patients. In their first paper,4 the life span of 108 consecutive applications for inpatient hospice care were estimated independently by two oncologists, a general internist, an oncology nurse, and a hospice socialworker. The survival estimations were based on data in a 10-page multi-disciplinaryapplication packet. The actual median survival of the 108 patients was 3.5 ± 12.4 weeks. Over one-fourth of the patients diedwithin one week of apply-
ing for hospice care, and only a small proportionlived beyond 12 weeks. The mean age of the sample was 66.2 years. Slightly more than half were female and approximately the same proportion were white. The most common major symptoms and signs at the time of application were ambulation difficulties, anemia, and pain. The survival predictions of the five member groups exceeded the actual survival by an average of 3.4 weeks. The authors concluded that this imprecision in expert estimation of life span poses substantial problems for hospice programs and policy makers.
However, a high KPS score was notpredictive of long-term survival because many of the patients with high initial scores died quickly. In a related paper in the American Journal of Hospice Care, Forster and Lynn5 extended their prior study. The authors collected data on 48 objective patientvariables. They were particularly interested in defining objective variables that could distinguish between patients who were likely to die within either three or six months and those who were likely to live longer. These variables included: primary neoplasm, hormone treatment, congestive heart failure, pain, disoriented, lack of funds, Kamofsky Score, respiratory, sodium, admitted to hospice, not admitted to hospice, and male and female. The Kamofsky Score and indication of weakness were the only two variables by logistic regression that contributed substantially to the probability ofdying within three months. Using the sixmonth survival, there was a correlation
between females and those who had hormone treatments indicating a high probability of living beyond sixmonths. Of interest, Forster and Lynn suggested, based upon this survival analysis and their research, that definable groups of applicants to hospice experienced different survival patterns. Also, they felt that worse life expectancy was found among those with primary neoplasms involving the lung and colon, with disorientation, without congestive heartfailure orhormone treatment and with low sodium levels. Furthermore, the authors found that accurate prognostication of survival takes more precise knowledge than previously appreciated, and that accuracy may be too limited for reliable forecasts in individual patients. In 1988, Reubens et al6 reported their results, as part of the National Hospice Study, on clinical symptoms and length of survival in patients with terminal cancer. The authors examined the correlation of 14 clinical symptoms with survival. The symptoms examined were: nausea, dry mouth, problems eating or anorexia, weight loss, difficulty swallowing, constipation, dizziness, fever, shortness of breath, diarrhea, hemorrhaging, bone
The authors concluded that this imprecision in expert estimation of life span poses substantial problems for hospice programs and policy makers. pain, severe pain, and moderate or severe disorientation. Performance status was again measured using the KPS scale.
The American Journal of Hospice & Palliative Care, March/April 1990 Downloaded from ajh.sagepub.com at UCSF LIBRARY & CKM on March 14, 2015
Letters The sample frame was obtained from the National Hospice Study data set. Fifty-three percent of the study patients were female. The average age was 67 years. The KPS was assessed by trained interviewers on the basis of their observation of thepatients.
Furthermore, the authors found that accurate prognostication of survival takes more precise knowledge than previously appreciated, andthat accuracy may be too limitedfor reliable forecasts in individualpatients. The authors found that the performance status was the most important clinical factor in estimating survival time. Of the 14 clinical symptoms assessed, five were found to have independent prognostic value, namely, shormess of breath, problems eating, dry mouth, trouble swallowing, and weight loss. Reuben et al6 noted that their prediction rule appeared to be most valuable in estimating length of survival for patients in the midlevel (KPS 30-40) and high-level (KPS 50) performance status categories. In their study, 67 percent of the patients were at midievel KPS. Predicted 50 percentsurvival ranged from 36 days for patients with all five symptoms to 115 days for patients with none of the symptoms. Similarly, predicted50 percent survival forthe 17.5 percent ofthe patients in the highest KPS category was 54 days if all five symptoms were present and 172 days if none were present. For patients in the lowest KPS category (10-20), survival was poor regardless of number of symptoms present. Predicted 50 percent-survival
was 16 days if all five symptoms were present and 53 days if none of the five symptoms were present. Thus, they concluded the value of the model may be less in the severely dysfunctional terminally ifi patient. Finally, Higginsonet a17 again emphasized the importance of the Karnofsky index as a predictor of survival in terminal care. Intheir patients, there was a clear trend of shorter survival with reducing mobility. When KPS ratings fell to 50 or below, 93 percent died within three months and 99 percent with six months. In summary, basedon this reviewof the literature, the following conclusions are offered: • Prognostication ofsurvival for the terminally ifi cancerpatient is an inexact science. • Utilization of a performance scale such as the Kamofsky scale maybehelpful both inthe initial as well as the ongoing assessmentof prognosisLI References 1. GAO/HRD-89-1l1 Hospice Participation in Medicare, Executive Summary 2. Yates JW~Chalmers B, MeKegney FP: Evaluation of patients with advanced cancer using the Karnofsky performance status. Cancar 1980;45:2220-2224 3. Evans C, McCarthy M: Prognostic uncertainty in terminal care: Can the Kamofsky index help? Lancet 1985;1:1204-1206 4. Forster LE, Lynn J: Predicting life span for applicants to inpatienthospice.ArchIntern Med 1988;148:2540-2543 5. Forster LE, Lynn J: The use of physiologic measures and demographic variables to predict longevity among inpatient hospice applicants. Am J Hospice Care 1989;6(2):31-34 6. Reuben DB, Mor V. Hiris J: Clinical symptoms and length of survival in patients with terminal cancer. Arch Intern Med 1988;148:1586-1591 7. Higginsonl, WadeA, McCarthyM: Financial help for terminally ill patients. Lancet 1990;1:172
The American Journal of Hospice & Palliative Care,March/April 1990 Downloaded from ajh.sagepub.com at UCSF LIBRARY & CKM on March 14, 2015
(Continued from page 10)
The final component of grief recovery involves moving beyond loss through dealing with anniversary dates, attempting new behaviors, and assisting others through the formation of small support groups. There are an array of self-help books available today. I believe The Grief Recovery Handbook is one of those books which can truly have an impact on individuals and their grief reconciliation. Daniel Klein, PhD, MSW Northern Illinois University DeKaib, Illinois The GriefRecovery Handbook, John W.
James and Frank Cherry Harper and Row, 1988, $15.95, 175 pages Editor note: This letter was published in the September/October 1990 issue, but the author and publisher information were omitted. We are sorry for the inconvenience. Editor’s notes
We regret that Susan Silver’s contribution to the editorial in the January/February 1990 issue, “A rationale for improving hospice reimbursement” was not recognized. Susan Silver, the journal’s book review editor provided the rationale, the bulleted items. We thank her very much for providing us with this assistance with our editorial.
Due to an editing error, the meaning of a sentence in “Cancer pain in children” by Porter Storey, MD in the January/February 1990 issue was changed. On page 12, atthe bottom of the first column, “In order to raise intracranial pressure for spinal cord compression...” should read, “In order to control raised intracranial pressure for spinal cord compression...” We deeply regret this error and appreciate Dr. Storey bringing it to our attention. In order to ensure the accuracy of articles appearing in the jourani, proofs are supplied to the authors for checking,whenever possible. In order to ensurethe highest possible standards of accuracy, we urge readers and authors to bring any errors they find to our attention, particularly ones like
the one mentioned above found by Dr. Storey, which alter the intent of the author.
13
