v ~ 5 No. 2 .,,prit 199o
jo,~,~ qp~.,, a.~ s,},,qxm,~a~,,,~ eJ
Original Article
Character of Termim! Illness in the Advanced Cancer Patient: Pain and Other Symptoms During the Last Four Weeks of Life Nessa Coyle, RN, Jean Adelhardt, RN. Kathleen M. Foley, MD, and Russell K. Portenoy, MD
Pain .~eroice,lk.partmmt of Neurology, Memorial SIoan-Ke~,ing Cancer Center, New York, New York
Abetmct
There is a great variability among advanced cancer patients in the experience of gymptoms and their impa~t on I~e's activities. A subgroup of di~cult patients part£'ularly tax the clinical skills and compassion of practitiouers. AIthougk the need for informafion "-.t~.at thee,,patients is evident, their ckaracteristirs have not been explored heretofore. We describe our experience with such patients, a group referred to the Supportive Care Program of the Pain Seroice at Mmorial Sloan-Ke~ng Cancer Ce~er. Premlence of pain and other symptoms, patterns of epioid use and routes of drug administration. and the prevalence of suicidal ideation and requestsfor euthanasia are discussed. J Pain Symptom Manage 1990;5:83-93. g O Words
Canter pain, palliative care, symptom control, opioids
tntrod~ Patients with advanced cancer commonly experlence multiple symW-oms?-s each of which roay adversely affect function or sense of wellbeing?.e-7 Among these symptoms, pain is the most feared, e.~'9-1s Studies have established that 60%-90% of patients with advanced disease report moderate to severe pain, an intensity sufficient to impair physical function, mood, and sociability substantially,m,14.ts Many
Addret~reprintrequeststo: NesgaCoyle, RN, Pain Ser-
vice, Department of Neurology, Memorial$]oan*Ketterin8 Hmpital, 1275 York Avenue, New York, NY 10021. Acceptedfor pub//m6on:November30, 1989. U,S.C~ncerbin ReliefCommitLee,1990 Publahedby Elsevier,NewYork,NewYork
other symptoms are also reported, however, of which asthenia is most frequent. 1'5 and these, too, can become major sources of distress for the cancer patient. The frequency, intensity, and impact of symptoms vary remarkably in the population with advanced cancer. Clinical experience suggests that there is a subgroup of especially problematic patients whose management taxes the clinical skillsand compassion of practitioners, as well as the psychologic and financial resources of the patient and family. AlthmJgh the need for information about these patients is evident, their characteristics have r~ceived little attention. We desccibe our experience with such patients, a group related to the Supportive Care Program of the Pain Service at Memorial Sloan-Kettering Cancer Center.
0885.$924/90/~.50
M ~ The Supportive Care Program was developed in 1981 to meet the needs of selected patients and their families who presented a cfinically challenging constellation of physical problems, poorly controlled symptoms, and psychologic or social dyd'unctlon. Types of patients considered for admission include throe with the following: (i) far advanced di~ase, (2) complicated pain and symptom control, ($) poor ~ d a l and family resourcas, and (4) psychologic distress. The Supporti,~ Care l~'ogram employs a nurse-conrdinated model, in which there is ongoing conaboradon among a variety of medical and nonmedical community contacts and a hnspital-based nurse, physician, and social worker. In this model, the nurse is responsible for the day-to.day management of the patient's pain and other symptoms. Expert advice is given to community health professionals working with the patient at home through follow-up offtce visits, home visits, and telephone contact available on a ~4-hr-a-day basis. The nurse acts as a liaison, ensuring that continuity of care is main~ned.lna We reviewed the records of 90 consecutive patients who had been followed by the Supportire C~'e Program for more than 4 wk prior to death during the period from June 1981 tuJuly 1987. These patients represent approximately 5% of the patients evaluated by the Pain Service and 44% ol" the ~02 patients followed by the Supportive Care Program during this period; Supportive Care Patients who were excluded comprised those without evaluable data at the selected time intervals and those with information that originated from the community nurse, rather than the patient or family. Although the patients' records were reviewed retrmpactively, data were collected prospectively through daily telephone contacts between the team nurse and patient or family. PersOnal visits at office or home were interspersed with these telephone contacts on an ad hoc basis. In each case, data were collected from the time of entry into the program until patient death, Complaints of pain and othen symptont| were tabulaled from these records at time intervals of 4 wk, $ wk, wit, arid I wk prior to death, Only those lymptoms volunteered by the patient were included, The nurse coordinator did not elicit informs-
tion about symptoms that were not spontaneously reported tint. Therefore, it is likely that the prevalence of symptoms is underrepresented, since those, that were present but not an overriding problem for the patient were not identified. Patterns of opiold use and routes of drug administration were also examined at time intei~rais of 4 wk, $ wk, 2 wk, I wk and 24 hr prior to death, Suicidal ideation and requests for euthanasia at any point during the patient's course were also reported. Pain was reported in terms of its intensity and presumed mechanism. Intensity was recorded with use of a categorical scale C'mild," ~mild to moderate," "moderate," "moderate to severe," and "severe"). The degree of interference in daily activity attributed m the pain by the patient was ~ recorded as ~mild," "moderate," or "severe." Activity level was described as bedbound or able to sit in a chair, engage in activities around the home. or leave the house. Presumed pain mechanism was labeled as so. matic, visceral, or neuropathic, with use of the following definitions: Sommic pain was described as dull, usually aching, and well local. ized. and it could be attributed to injury of a somatic structure, such as bone; visceral pain was described as a poorly localir~.cl, dull aching or cramping pain that could be attributed to a lesion affecting the viscera; and neurop~tthic pain was describc.d as an unfamiliar buroir.~ or "shooting" pain associated with evidence of neural injury. Opioid consumption was recorded in morphine equivalent milligrams for the purpose of comparing various drugs, The total daily dose of the opiold used by the patient was converted to an equianalgesic quantity of intramuscular tIM) morphine per 24 hr using a standard equivalency table3 The oral to paronteral conversion used for morphine was 3:1. Suicidal ideation was noted if patients discussed suicide as an option "somewhere in the future," with or without a specific plan. Suicidal patients were defined as those who had a specific plan with immediate intent.
P,~-'u/ts Patients ranged tn age from 93 to g~ yr. Fiftysix pat~cent of the patients were female, and 44% were male. Primary tumor sites in lung, colon, and breast accounted for two thirds of
Voi. 5 No. 2 April 1990
Character of A d z ~ , d Cancer as Termhud Illness
patients (Table !). At 4 wk prior to death, 81% of patients had a Karoofsky Performance Scale rating nf40 or below, with a further 17% having a performance rating of 50. Activity level for 77% of patients ranged from full-time in bed to full-time in bed or chair; 4% of patients were in bed continuously, while 19% of patients were able to engage in some form of limited activity outside the home. All patients were cared fcr at home, with 51 (57%) dying at home, 37 (41%) dying io the hospital, and 2 (9%) dying in an emergency room.
Pm ~d Ot,~/d~g One hundred percent of the patients included in this survey had pain, Sixty-seven percent of these had a combination of more than one type of pain: Somatic and neuropathic pain occurred together in 40% of patients. At 4 wk prior to death, the pain was described as mild to moderate in 80% and moderate to severe in 20%. Of these patients who described pain as varying between mild to moderate, 39% characterized incident pain (pain following a vohmtary act, usually movement) as a major limiting factor to activity. Among those who rated pain as moderate to severe, 94% described it as a major limitation to activity (Table 2). Patients were administered a variety of opioids and routes of drug administration during the last 4 wk of life. The two most common opioids were hytiromorphine and morphine (Table 3). A combination of opioids was adTable 1
Demogtapbica and Tumor Types of 90 Patients Treated by the SupportiveCare Program Tumor Type Lung Colon Breast
Head and neck Gynecologic Prostate Pancreas Lymphoma Sarcoma Bladder Neure Other
N (%) 23 (26) 18 (20) 18 (,~0) 9 (10) 6 (7) 3 (3l 2 (2) 2 (2) 2 (2) 3 (3) £ (2) 7 (8)
Age: median, 55 yr; ~nge, 23-82 yr. Sex: male, 40 (44%); female, 50 (56%), Fivepatients had two primary tumors.
85
ministered to 15 (17%) patients during this 4-wk peritxl. Methadone combined with a drug with a short half-life accounted for 62% of these combinations. Fifty-thee patients (59%) used more than one route of drug administration during the last 4 wk of life (Tables 4 and 5). Although the oral route was most commonly employed 4 wk before death (64%), only 19 patients (21%) could utilize this route in the last day of life, during which intermittent intramuscular or subcutaneous injections were the most common modes nfdrng administration (34%). Infusions were administered to 14% of patients 4 wk before death (subcutaneous in 9 patients and intravenoos in 4 patients) and 26% during the 24 hr prior to death (subcutaneous in 7 patients and intravenous in 16 patients). Total daily opioid consumption ranged from 7 to 35,164 IM morphine equivalent milligrams ('Fable 6). Five percent of patients used an opioid dose of greater than 900 IM morphine equivalent mg per day 4 wk before death; within 24 hr of death, this proportion in~'reased to 9%, Of these eight patients, all received the drug by continuous infusion (four by the subcutaneons route and four by the intravenous route); seven of these eight patients were maintained at home until death. ~. Thirty-seven percent of patients h,t.reased their opioid requirements by 25% or more during the last 4 w~ of life; 24% decreased their oploid consumption by this amount, and 39% maintained a relatively stable opinid dine. Twenty-four patients (27%) rapidly increased or decreased their opioid dose within the last week of life; 83% of these rapid changes occurred within the last 24 hr of life. Eighty-two patients (91%) had patterns of opioid use in the last 4 wk of life that could be categorized into one of five dis6nct groups, as follows: 1. Group I: Stable opinid use with little or no escalation. This accounted for 27 patients (30%). 2. Group 2: Stable opioid use except for (1) rapid escalation 24 hr prior to death, (2) rapid decrease in drug use 24 hr prior to death, or (3) rapid initial escalation followed by stabilization of dose. Group 2 accounted for 21 patients (23%). 3. Group 3: Zig-zag pattern of increase or de-
co~ . ,J.
]o~
ef P m ~ Sy~e~ M m r ~ t
Tebb 2
Pala identified by IPademw a Major Linddng Fnetne in Activity4 W[*.I~eforeDeath liV 1 90 Pmiems)
None
o (0) 24 (27) 17 (19) $I (.~4) 18 (20) 0 (o)
Mild Mild m moderate
Moderate Moderate to ~w:lr Severe
crease in opiold me associated with changing symptoms and medical status. This accounted for 14 patients (16%). 4. Group 4: Stepladder increase in opioid requirements with periods of stabilizadou at each plateau. Twelve patients (14%) conformed to this pattern, 5, Group 6: Bell.shaped pattern with a gradual inc~a~ in the drug, a period of stabilixndon, then a gradual decrease in opkdd intake before death. Thb accounted for eight patients (9%),
e,m~
N (%) at This Pain Severity for Whom Pain Primarily Limited Activity
N (%)
Pain Severiey
q~
Oe~ em e ~
At various dme,~, these patients spontauc,.~,ls. iy identified 44 different symptoms distressing
0 (0) 2 (8) 7 (41) 19 (61)
17 (94) 0 (0)
enough to interfere with acdvity (Tables 7 and 8). If a symptom was not volunteered, the nurse comdlnator did not attempt to elicit it. As noted, thiq approach would tend m underestimate the prevalence of symptoms. The number of symptoms volunteered per person ranged from I m 9 (Table 9). At 4 wk before death, 64 patients (71%) described three or more distinct symptoms. At this time, fatigue (58%), weakne~ (49%), dcepiuess (2.t%), and cognitive impmrment (24%) were the most prevalent symptoms. Anxiety (21%), lower extremity weakness (18%), dyspnea (17%), and nausea (12%) were lets frequent, albeit equally d i t t o i n g complaints, Although the range of symptoms were similar at 4 wk and 1 wk before
Ta~J Oplekb U*ed by padents 4 Wk Bef~e Deuth and I Wk Ik4"oreDeath (N - 90) t¢ (%)
Opioid Patientsadministereda singleopiotd Hydmmmvhene Morphine Methadone C~ymorphonemppndtoriem I~dents adminil~.,ed two opiokh Methadoneand hydromorphone Medmd,,',neand moq~hine Metlmdoneandonycndone ~henolandhydesn~rphone I~vorphenol and ~mthadone* he.ot ,nd morphine tndeRyeodone* smt oxymsrphaaemppo~P'arle* No ol~oki* *Padenton combIMtkm when mfened into ~ m ;
4 Wk Before Death
I Wk Before Death
72 (80) 2i ~3) 19 (21) 11 (12) 0 (0) 15 (17) 5 (5) S (3) 2 (2) 2 (2) I (I) I (I) I (I) 0 (0)
76 (84) 70 (~) 32 (36) 10 (I 1) I (I) 11 (12~ 4 (4) 2 (2) I (l) I (I) 0 (0) 2 (2) 0 (0) ! (I)
S (S)
s (s)
one drug ml~eqnemly dtacondnued.
VoL 5 No. 2 April 1990
C3m~ter of .4dmnc~ Cancer as Terminal Illness
Table4 N m b e r of Routes of Opioid Adminhtration Required in Last 4 Wk of Life (N ~ 90)
Nb.qmber of Routes
N (%)
1 2 3 4
37 (41) 46 (51l 6 (7) ! (I)
death, there was a shift in the prevalence of the different types (Table 7). For example, the prevalence of sleepiness increased from 24% to 57%, and the prevalence of dyspnea increased from 17% to 28% during this period.
Su/dda/l&at/on Eighteen patients (20%) acknowledged suicidal ideation (suicide discussed as an option "somewhere in the future" with or without a specific plan) at some point during their management by the Supportive Care Program; an additional four patients were suicidal, elaborating a specific plan. This information was either reported spontaneously or elicited through direct questioning by the nurse coordinator; a formal interview was not used. Four patients requested euthanasia. In each of these cases. the request was specific and spontaneous without direct or indirect prompting from the nurse coordinator. O f the 18 patients with suicidal ideation but no plan, pain varied from mild (50%) to severe (17%). All spoke of marked ovewll generalized
87
fatigue. T h e four patients with a specific suicide plan were clinically depressed; all were treated with antidepres~nt~ ~t~d funowed by the psychiatry service. Pain was rated as r~ld gb moderate in these cases. Two o f these pauents committed suicide, both of whom had a recurrent delirium. O f the four patients requesting euthag~asia, pain was rated as severe in one case and mild to moderate in three cases. The patient whr.se pain was severe was also clinically depressed. After treatment of both pain and depr~'~,sion, this individual no longer desired euthanasia. One patient with advanced lung cancer experienced an episode of acute shortness of breath and feelings of suffc~:~ttion and requested euthanasia if this symptom recurred. A third padent requested euthanasia in response m discover,/ of a new metastatic lesion, and this remained an underlying theme in her management throughout tb. last few weeks of life. The fourth patient requeseed euthanasia after progressive meningeal carc'nomatosis led to an inability to talk, hear, swallow, and walk.
D/scuss/on This group of dying patie.*~ts experienced pain and other symptoms that were ditficult to control and were often associated with concurrent deterioration of physical, psychologic, and social functioning. Patients at this end of the clinical spectrum are likely to challenge the resources of any c~inician. A detailed evallmtion
Table 5 Opioid Requirements 4 Wk and I Wk before Death and on the Day of Death (N ~ 90)
N (%l
IM Morphine EQuivalem rag/Day ~
4 Wk Before Death
I Wk Before Death
24 Hr Before Death
No opioids 7-99 100-199 200-299 300-699 7OO-899 900-1,999 2,000-5,000 8,000-|1,0~) i5,984 19,200 S5,164
3 (3) 43 (48) 19 (21) 11 (12) 9 (10) 0 (0) 2 (2) I (I) I (I) I (I) 0 (0) 0 (0)
3 (3) 37 (41) 25 (98) 7 (8) 10 (1 I) 0 (0) 2 (2) 4 (4) 2 (2) O (0) 0 (0) 0 (0)
5 (6) 45 (48) 10 (11) 9(10) 13 (14) 2 (2) I (1) 5 (6) 0 (0) 0 (0) 1 (1) I (1)
*Morphine conversion of oral:parenteral is 3: I.
~ ,
Co~ ~ d,
Jour~l of P ~ 6nd S~n~m M
~
Tttb/¢ 6 Mmna of Oploid Admlnbtestimn 4 W~ aml I Wk Befme Death and on the Day of Duth (N m 90) Jv (%) Route
4 Wk Before Death
I Wk Before Death
24 Hr Before Death
56 (62) 2 (2) , (I)
$9 (45) l (I) 2 (2)
18 (20) l (l) 2 (2)
5 (5) 9 (lO) l (l) 4 (4) o (o)
It (12) l0 (It) 5 (6) tO(It) l (I)
31 (34) 7 (8) 3 (3) 16(18) t (l)
Ond Gan,oqttomy Rectal Pa~,nteral lntenainextlM/SC SC infmlom IVbolus IV infmlom Epklurel Combined mutt,s Oral and SC OralandlV Oralaedepidamt Oralamirectal GutroMoalyandlVbolus No opto~
7 0 I 0 I 3
(8) (0) (I) (O) (I) (3)
Ta~*7 Prewdeare of Syrup;ores Volumsered by Advmced Cancer Patten~ 4 Wk mad I Wit llefom r ~ h ( s = 90l N (%)
Symptom q~
6exemltzed weakness Sle~plnm Mental haziness/ confusion Amdety Wemknett of legs Slua.tneu of breath Nausea heating Depressio~ Lmsofappetite Inabifity m sleep Weakness of upper limb Cough Beule~ initabtfitv Swollen limb Comttpation Digkahyswallowlnll Pulmoaarycongestkm Olulnm hmmtinence Dlmcuhy speaking
4 W~* Before Death
I Wk Before Death
52 (~8} 49 (~O 39 (,~3) 2~ (~4)
47 (52) St (34) 4,. (49} 5~ (37)
~ (24) 19 (21) 16 (18) 15 (17) I I (12) 8 (9) 7 (8) 7 (8) 6 (7)
25 (78) 16 (18) 15(17) 25 (28) 12 (IS) 5 (6) 4 (4) 5 (6) 5 (6)
6 (7) 5 (6)
5 (6) 6 (7)
5 4 4 S I l a 5
6 7 6 6 5 5 5 5
(6) (4) (4) (S) (I) (I) (5) (6)
(7) (6) (7) (7) (6) (6) (6) (6)
Symptoms reported by less than 5% of patients at both time intervals are not included.
5 I o l I 3
(6) (l) (0) (l) (l) (s)
4 I 0 0 l 5
(4) (1) (o) (o) (I) (6)
of their experience is needed to clarify the special problems they present and resources they require. Moreover, the findings in this group highlight the variability and range of needs observed in all patients with advanced cancer. The effort to replace anecdotal descriptions of the. dying patient with empi;-ic data in which salient symptoms are identified and, if possible, quantified, is a critical step in characterizing the services required by this group.
P~ seo~ Moderate to severe pain often limits activity. to Twenty percent of our patients continued to complain of moderate to severe pain 4 wk prior to death. These patients fell into two broad and overlapping groups: (i) throe who were comfortable at rest but had severe pain on movement, and (2) those who had tumor infiltration of a nerve plexus. Those patients who were comfortable at rest but reported moderate to severe activity-related pain did not perceive reduced mobility as an acceptable method of pain relief. The importance of activity-related pain suggests that routine pain assessment should specifically focus on this problem, as well as spontaneous pain. |s-t0 Our experience suggests that it is extremely important to set realistic goals for pain relief, lest unrealistic goals increase the level of frustration experienced b) the patient, family, and staff. For most patients, freedom from pain with activity is unrealistic,se-u and, indeed, it
VoL 5 No. 2 April 1990
Character of Advanced Cancer as Termi~d Illness
Tob~ 8 Symptoms Volunteered by Less Than 5% of Advanced Cancer Patier~t~in Last 4 Wk of Life Panic attacks Altered body sensation Fear of being harmed by others Hallucinations Swollen girth Diarrhea Decreased vision Inability m sit Mouth sores Decreased memory Nightmares Unsteady gait Burning on urination Spaciness Double vision Hiccoughs jerky movements Itch Bioatedness Bladder spasms
sient, often encouraged a sense of comroi ,~nd predictability, which is itself therapeutic. As realistic goals are set, it is similarly important to distinguish pain from other symptoms. We have often observed that the patient, family, or staff may become very enthusiastic ~bout a new pain management approach, tacitl) believing that pain relief will result in the elindnation of all symptoms. Unfortunately, the relief of pain without the relief of other symptoms may focus attention on the latter, in somr cases markedly increasing the patient's distress. Ruminations about extent of disease and prognosis may also increase. These observations -Jnderscore both the importance of a comprehensive assessment of pain and other symptoms a~.d the need to balance hope with realism.
o~o~ s ~ u ~
may be appropriate for some advanced cancer patients to remain in bed continuously if contrnl of pain is not otherwise possible. Other strategies for treating activity-related pain in our population include supplemental doses of an analgesic ("rescue doses") prior to activity, the use of relaxation or distraction, and the identification of physical techniques or orthotics to support or guard the painful part or limit painful movements. Patients benefit from information abo~tt the pattern of their pain, including the precipitants that are identified and the daily variation; reassurance that exacerba* tions of pain are common, and usually tranTable 9 Number of Symptoms Other than Pain Volunteen~ per Patient 4 Wk Before Death and ! Wit Before Death (N = 90)
(%) Number of Symptoms
4 Wk Before Death
I Wk Before Death
I 2 3 4 5 6
7 (8) 19 (21) 26 (29) 26 (29) 7 (8) 4 (4)
7 (8) 17 (19) 22 (24) 19 (21) IS (14) 6 (7)
7
I (l) 0 (0) 0 (0)
~ (3) 2 (2) I (D
S
89
The patients in this survey were administered a variety of opioid drugs. Although morphine has been suggested by the World Health Organization (WHO) as the drug of choice for severe cancer-related pain. ss this is based on its wide clinical use and availability, rather than on unique properties of the drug. Clinical experience suggests that there is remarkable variability, both within an individual and among advanced cancer patients, in the efficacy and side effects associated with the different opioids.7 The selection o f an opioid in this group o~ patients is thus largely empiric, based on the patient's previous experience with opioid drugs, tbe effe,:tiveness and side effects of the current analgesic regimen, and a variety of other factors (eg, age, medical status, and compliance). A change from one drug to another is frequently undertaken in an effort to improve analgesia or reduce side effects. The most common indications for switching opioids in our population were (i) inadequ2te pain relief with excessive side effects, usually sedation or mental cionding; (2) progressive pain leading to the need to administer an opioid comr~only used on the third rung of the so
jo,~,~ qp~.,, a.~ s,},,qxm,~a~,,,~ eJ
Original Article
Character of Termim! Illness in the Advanced Cancer Patient: Pain and Other Symptoms During the Last Four Weeks of Life Nessa Coyle, RN, Jean Adelhardt, RN. Kathleen M. Foley, MD, and Russell K. Portenoy, MD
Pain .~eroice,lk.partmmt of Neurology, Memorial SIoan-Ke~,ing Cancer Center, New York, New York
Abetmct
There is a great variability among advanced cancer patients in the experience of gymptoms and their impa~t on I~e's activities. A subgroup of di~cult patients part£'ularly tax the clinical skills and compassion of practitiouers. AIthougk the need for informafion "-.t~.at thee,,patients is evident, their ckaracteristirs have not been explored heretofore. We describe our experience with such patients, a group referred to the Supportive Care Program of the Pain Seroice at Mmorial Sloan-Ke~ng Cancer Ce~er. Premlence of pain and other symptoms, patterns of epioid use and routes of drug administration. and the prevalence of suicidal ideation and requestsfor euthanasia are discussed. J Pain Symptom Manage 1990;5:83-93. g O Words
Canter pain, palliative care, symptom control, opioids
tntrod~ Patients with advanced cancer commonly experlence multiple symW-oms?-s each of which roay adversely affect function or sense of wellbeing?.e-7 Among these symptoms, pain is the most feared, e.~'9-1s Studies have established that 60%-90% of patients with advanced disease report moderate to severe pain, an intensity sufficient to impair physical function, mood, and sociability substantially,m,14.ts Many
Addret~reprintrequeststo: NesgaCoyle, RN, Pain Ser-
vice, Department of Neurology, Memorial$]oan*Ketterin8 Hmpital, 1275 York Avenue, New York, NY 10021. Acceptedfor pub//m6on:November30, 1989. U,S.C~ncerbin ReliefCommitLee,1990 Publahedby Elsevier,NewYork,NewYork
other symptoms are also reported, however, of which asthenia is most frequent. 1'5 and these, too, can become major sources of distress for the cancer patient. The frequency, intensity, and impact of symptoms vary remarkably in the population with advanced cancer. Clinical experience suggests that there is a subgroup of especially problematic patients whose management taxes the clinical skillsand compassion of practitioners, as well as the psychologic and financial resources of the patient and family. AlthmJgh the need for information about these patients is evident, their characteristics have r~ceived little attention. We desccibe our experience with such patients, a group related to the Supportive Care Program of the Pain Service at Memorial Sloan-Kettering Cancer Center.
0885.$924/90/~.50
M ~ The Supportive Care Program was developed in 1981 to meet the needs of selected patients and their families who presented a cfinically challenging constellation of physical problems, poorly controlled symptoms, and psychologic or social dyd'unctlon. Types of patients considered for admission include throe with the following: (i) far advanced di~ase, (2) complicated pain and symptom control, ($) poor ~ d a l and family resourcas, and (4) psychologic distress. The Supporti,~ Care l~'ogram employs a nurse-conrdinated model, in which there is ongoing conaboradon among a variety of medical and nonmedical community contacts and a hnspital-based nurse, physician, and social worker. In this model, the nurse is responsible for the day-to.day management of the patient's pain and other symptoms. Expert advice is given to community health professionals working with the patient at home through follow-up offtce visits, home visits, and telephone contact available on a ~4-hr-a-day basis. The nurse acts as a liaison, ensuring that continuity of care is main~ned.lna We reviewed the records of 90 consecutive patients who had been followed by the Supportire C~'e Program for more than 4 wk prior to death during the period from June 1981 tuJuly 1987. These patients represent approximately 5% of the patients evaluated by the Pain Service and 44% ol" the ~02 patients followed by the Supportive Care Program during this period; Supportive Care Patients who were excluded comprised those without evaluable data at the selected time intervals and those with information that originated from the community nurse, rather than the patient or family. Although the patients' records were reviewed retrmpactively, data were collected prospectively through daily telephone contacts between the team nurse and patient or family. PersOnal visits at office or home were interspersed with these telephone contacts on an ad hoc basis. In each case, data were collected from the time of entry into the program until patient death, Complaints of pain and othen symptont| were tabulaled from these records at time intervals of 4 wk, $ wk, wit, arid I wk prior to death, Only those lymptoms volunteered by the patient were included, The nurse coordinator did not elicit informs-
tion about symptoms that were not spontaneously reported tint. Therefore, it is likely that the prevalence of symptoms is underrepresented, since those, that were present but not an overriding problem for the patient were not identified. Patterns of opiold use and routes of drug administration were also examined at time intei~rais of 4 wk, $ wk, 2 wk, I wk and 24 hr prior to death, Suicidal ideation and requests for euthanasia at any point during the patient's course were also reported. Pain was reported in terms of its intensity and presumed mechanism. Intensity was recorded with use of a categorical scale C'mild," ~mild to moderate," "moderate," "moderate to severe," and "severe"). The degree of interference in daily activity attributed m the pain by the patient was ~ recorded as ~mild," "moderate," or "severe." Activity level was described as bedbound or able to sit in a chair, engage in activities around the home. or leave the house. Presumed pain mechanism was labeled as so. matic, visceral, or neuropathic, with use of the following definitions: Sommic pain was described as dull, usually aching, and well local. ized. and it could be attributed to injury of a somatic structure, such as bone; visceral pain was described as a poorly localir~.cl, dull aching or cramping pain that could be attributed to a lesion affecting the viscera; and neurop~tthic pain was describc.d as an unfamiliar buroir.~ or "shooting" pain associated with evidence of neural injury. Opioid consumption was recorded in morphine equivalent milligrams for the purpose of comparing various drugs, The total daily dose of the opiold used by the patient was converted to an equianalgesic quantity of intramuscular tIM) morphine per 24 hr using a standard equivalency table3 The oral to paronteral conversion used for morphine was 3:1. Suicidal ideation was noted if patients discussed suicide as an option "somewhere in the future," with or without a specific plan. Suicidal patients were defined as those who had a specific plan with immediate intent.
P,~-'u/ts Patients ranged tn age from 93 to g~ yr. Fiftysix pat~cent of the patients were female, and 44% were male. Primary tumor sites in lung, colon, and breast accounted for two thirds of
Voi. 5 No. 2 April 1990
Character of A d z ~ , d Cancer as Termhud Illness
patients (Table !). At 4 wk prior to death, 81% of patients had a Karoofsky Performance Scale rating nf40 or below, with a further 17% having a performance rating of 50. Activity level for 77% of patients ranged from full-time in bed to full-time in bed or chair; 4% of patients were in bed continuously, while 19% of patients were able to engage in some form of limited activity outside the home. All patients were cared fcr at home, with 51 (57%) dying at home, 37 (41%) dying io the hospital, and 2 (9%) dying in an emergency room.
Pm ~d Ot,~/d~g One hundred percent of the patients included in this survey had pain, Sixty-seven percent of these had a combination of more than one type of pain: Somatic and neuropathic pain occurred together in 40% of patients. At 4 wk prior to death, the pain was described as mild to moderate in 80% and moderate to severe in 20%. Of these patients who described pain as varying between mild to moderate, 39% characterized incident pain (pain following a vohmtary act, usually movement) as a major limiting factor to activity. Among those who rated pain as moderate to severe, 94% described it as a major limitation to activity (Table 2). Patients were administered a variety of opioids and routes of drug administration during the last 4 wk of life. The two most common opioids were hytiromorphine and morphine (Table 3). A combination of opioids was adTable 1
Demogtapbica and Tumor Types of 90 Patients Treated by the SupportiveCare Program Tumor Type Lung Colon Breast
Head and neck Gynecologic Prostate Pancreas Lymphoma Sarcoma Bladder Neure Other
N (%) 23 (26) 18 (20) 18 (,~0) 9 (10) 6 (7) 3 (3l 2 (2) 2 (2) 2 (2) 3 (3) £ (2) 7 (8)
Age: median, 55 yr; ~nge, 23-82 yr. Sex: male, 40 (44%); female, 50 (56%), Fivepatients had two primary tumors.
85
ministered to 15 (17%) patients during this 4-wk peritxl. Methadone combined with a drug with a short half-life accounted for 62% of these combinations. Fifty-thee patients (59%) used more than one route of drug administration during the last 4 wk of life (Tables 4 and 5). Although the oral route was most commonly employed 4 wk before death (64%), only 19 patients (21%) could utilize this route in the last day of life, during which intermittent intramuscular or subcutaneous injections were the most common modes nfdrng administration (34%). Infusions were administered to 14% of patients 4 wk before death (subcutaneous in 9 patients and intravenoos in 4 patients) and 26% during the 24 hr prior to death (subcutaneous in 7 patients and intravenous in 16 patients). Total daily opioid consumption ranged from 7 to 35,164 IM morphine equivalent milligrams ('Fable 6). Five percent of patients used an opioid dose of greater than 900 IM morphine equivalent mg per day 4 wk before death; within 24 hr of death, this proportion in~'reased to 9%, Of these eight patients, all received the drug by continuous infusion (four by the subcutaneons route and four by the intravenous route); seven of these eight patients were maintained at home until death. ~. Thirty-seven percent of patients h,t.reased their opioid requirements by 25% or more during the last 4 w~ of life; 24% decreased their oploid consumption by this amount, and 39% maintained a relatively stable opinid dine. Twenty-four patients (27%) rapidly increased or decreased their opioid dose within the last week of life; 83% of these rapid changes occurred within the last 24 hr of life. Eighty-two patients (91%) had patterns of opioid use in the last 4 wk of life that could be categorized into one of five dis6nct groups, as follows: 1. Group I: Stable opinid use with little or no escalation. This accounted for 27 patients (30%). 2. Group 2: Stable opioid use except for (1) rapid escalation 24 hr prior to death, (2) rapid decrease in drug use 24 hr prior to death, or (3) rapid initial escalation followed by stabilization of dose. Group 2 accounted for 21 patients (23%). 3. Group 3: Zig-zag pattern of increase or de-
co~ . ,J.
]o~
ef P m ~ Sy~e~ M m r ~ t
Tebb 2
Pala identified by IPademw a Major Linddng Fnetne in Activity4 W[*.I~eforeDeath liV 1 90 Pmiems)
None
o (0) 24 (27) 17 (19) $I (.~4) 18 (20) 0 (o)
Mild Mild m moderate
Moderate Moderate to ~w:lr Severe
crease in opiold me associated with changing symptoms and medical status. This accounted for 14 patients (16%). 4. Group 4: Stepladder increase in opioid requirements with periods of stabilizadou at each plateau. Twelve patients (14%) conformed to this pattern, 5, Group 6: Bell.shaped pattern with a gradual inc~a~ in the drug, a period of stabilixndon, then a gradual decrease in opkdd intake before death. Thb accounted for eight patients (9%),
e,m~
N (%) at This Pain Severity for Whom Pain Primarily Limited Activity
N (%)
Pain Severiey
q~
Oe~ em e ~
At various dme,~, these patients spontauc,.~,ls. iy identified 44 different symptoms distressing
0 (0) 2 (8) 7 (41) 19 (61)
17 (94) 0 (0)
enough to interfere with acdvity (Tables 7 and 8). If a symptom was not volunteered, the nurse comdlnator did not attempt to elicit it. As noted, thiq approach would tend m underestimate the prevalence of symptoms. The number of symptoms volunteered per person ranged from I m 9 (Table 9). At 4 wk before death, 64 patients (71%) described three or more distinct symptoms. At this time, fatigue (58%), weakne~ (49%), dcepiuess (2.t%), and cognitive impmrment (24%) were the most prevalent symptoms. Anxiety (21%), lower extremity weakness (18%), dyspnea (17%), and nausea (12%) were lets frequent, albeit equally d i t t o i n g complaints, Although the range of symptoms were similar at 4 wk and 1 wk before
Ta~J Oplekb U*ed by padents 4 Wk Bef~e Deuth and I Wk Ik4"oreDeath (N - 90) t¢ (%)
Opioid Patientsadministereda singleopiotd Hydmmmvhene Morphine Methadone C~ymorphonemppndtoriem I~dents adminil~.,ed two opiokh Methadoneand hydromorphone Medmd,,',neand moq~hine Metlmdoneandonycndone ~henolandhydesn~rphone I~vorphenol and ~mthadone* he.ot ,nd morphine tndeRyeodone* smt oxymsrphaaemppo~P'arle* No ol~oki* *Padenton combIMtkm when mfened into ~ m ;
4 Wk Before Death
I Wk Before Death
72 (80) 2i ~3) 19 (21) 11 (12) 0 (0) 15 (17) 5 (5) S (3) 2 (2) 2 (2) I (I) I (I) I (I) 0 (0)
76 (84) 70 (~) 32 (36) 10 (I 1) I (I) 11 (12~ 4 (4) 2 (2) I (l) I (I) 0 (0) 2 (2) 0 (0) ! (I)
S (S)
s (s)
one drug ml~eqnemly dtacondnued.
VoL 5 No. 2 April 1990
C3m~ter of .4dmnc~ Cancer as Terminal Illness
Table4 N m b e r of Routes of Opioid Adminhtration Required in Last 4 Wk of Life (N ~ 90)
Nb.qmber of Routes
N (%)
1 2 3 4
37 (41) 46 (51l 6 (7) ! (I)
death, there was a shift in the prevalence of the different types (Table 7). For example, the prevalence of sleepiness increased from 24% to 57%, and the prevalence of dyspnea increased from 17% to 28% during this period.
Su/dda/l&at/on Eighteen patients (20%) acknowledged suicidal ideation (suicide discussed as an option "somewhere in the future" with or without a specific plan) at some point during their management by the Supportive Care Program; an additional four patients were suicidal, elaborating a specific plan. This information was either reported spontaneously or elicited through direct questioning by the nurse coordinator; a formal interview was not used. Four patients requested euthanasia. In each of these cases. the request was specific and spontaneous without direct or indirect prompting from the nurse coordinator. O f the 18 patients with suicidal ideation but no plan, pain varied from mild (50%) to severe (17%). All spoke of marked ovewll generalized
87
fatigue. T h e four patients with a specific suicide plan were clinically depressed; all were treated with antidepres~nt~ ~t~d funowed by the psychiatry service. Pain was rated as r~ld gb moderate in these cases. Two o f these pauents committed suicide, both of whom had a recurrent delirium. O f the four patients requesting euthag~asia, pain was rated as severe in one case and mild to moderate in three cases. The patient whr.se pain was severe was also clinically depressed. After treatment of both pain and depr~'~,sion, this individual no longer desired euthanasia. One patient with advanced lung cancer experienced an episode of acute shortness of breath and feelings of suffc~:~ttion and requested euthanasia if this symptom recurred. A third padent requested euthanasia in response m discover,/ of a new metastatic lesion, and this remained an underlying theme in her management throughout tb. last few weeks of life. The fourth patient requeseed euthanasia after progressive meningeal carc'nomatosis led to an inability to talk, hear, swallow, and walk.
D/scuss/on This group of dying patie.*~ts experienced pain and other symptoms that were ditficult to control and were often associated with concurrent deterioration of physical, psychologic, and social functioning. Patients at this end of the clinical spectrum are likely to challenge the resources of any c~inician. A detailed evallmtion
Table 5 Opioid Requirements 4 Wk and I Wk before Death and on the Day of Death (N ~ 90)
N (%l
IM Morphine EQuivalem rag/Day ~
4 Wk Before Death
I Wk Before Death
24 Hr Before Death
No opioids 7-99 100-199 200-299 300-699 7OO-899 900-1,999 2,000-5,000 8,000-|1,0~) i5,984 19,200 S5,164
3 (3) 43 (48) 19 (21) 11 (12) 9 (10) 0 (0) 2 (2) I (I) I (I) I (I) 0 (0) 0 (0)
3 (3) 37 (41) 25 (98) 7 (8) 10 (1 I) 0 (0) 2 (2) 4 (4) 2 (2) O (0) 0 (0) 0 (0)
5 (6) 45 (48) 10 (11) 9(10) 13 (14) 2 (2) I (1) 5 (6) 0 (0) 0 (0) 1 (1) I (1)
*Morphine conversion of oral:parenteral is 3: I.
~ ,
Co~ ~ d,
Jour~l of P ~ 6nd S~n~m M
~
Tttb/¢ 6 Mmna of Oploid Admlnbtestimn 4 W~ aml I Wk Befme Death and on the Day of Duth (N m 90) Jv (%) Route
4 Wk Before Death
I Wk Before Death
24 Hr Before Death
56 (62) 2 (2) , (I)
$9 (45) l (I) 2 (2)
18 (20) l (l) 2 (2)
5 (5) 9 (lO) l (l) 4 (4) o (o)
It (12) l0 (It) 5 (6) tO(It) l (I)
31 (34) 7 (8) 3 (3) 16(18) t (l)
Ond Gan,oqttomy Rectal Pa~,nteral lntenainextlM/SC SC infmlom IVbolus IV infmlom Epklurel Combined mutt,s Oral and SC OralandlV Oralaedepidamt Oralamirectal GutroMoalyandlVbolus No opto~
7 0 I 0 I 3
(8) (0) (I) (O) (I) (3)
Ta~*7 Prewdeare of Syrup;ores Volumsered by Advmced Cancer Patten~ 4 Wk mad I Wit llefom r ~ h ( s = 90l N (%)
Symptom q~
6exemltzed weakness Sle~plnm Mental haziness/ confusion Amdety Wemknett of legs Slua.tneu of breath Nausea heating Depressio~ Lmsofappetite Inabifity m sleep Weakness of upper limb Cough Beule~ initabtfitv Swollen limb Comttpation Digkahyswallowlnll Pulmoaarycongestkm Olulnm hmmtinence Dlmcuhy speaking
4 W~* Before Death
I Wk Before Death
52 (~8} 49 (~O 39 (,~3) 2~ (~4)
47 (52) St (34) 4,. (49} 5~ (37)
~ (24) 19 (21) 16 (18) 15 (17) I I (12) 8 (9) 7 (8) 7 (8) 6 (7)
25 (78) 16 (18) 15(17) 25 (28) 12 (IS) 5 (6) 4 (4) 5 (6) 5 (6)
6 (7) 5 (6)
5 (6) 6 (7)
5 4 4 S I l a 5
6 7 6 6 5 5 5 5
(6) (4) (4) (S) (I) (I) (5) (6)
(7) (6) (7) (7) (6) (6) (6) (6)
Symptoms reported by less than 5% of patients at both time intervals are not included.
5 I o l I 3
(6) (l) (0) (l) (l) (s)
4 I 0 0 l 5
(4) (1) (o) (o) (I) (6)
of their experience is needed to clarify the special problems they present and resources they require. Moreover, the findings in this group highlight the variability and range of needs observed in all patients with advanced cancer. The effort to replace anecdotal descriptions of the. dying patient with empi;-ic data in which salient symptoms are identified and, if possible, quantified, is a critical step in characterizing the services required by this group.
P~ seo~ Moderate to severe pain often limits activity. to Twenty percent of our patients continued to complain of moderate to severe pain 4 wk prior to death. These patients fell into two broad and overlapping groups: (i) throe who were comfortable at rest but had severe pain on movement, and (2) those who had tumor infiltration of a nerve plexus. Those patients who were comfortable at rest but reported moderate to severe activity-related pain did not perceive reduced mobility as an acceptable method of pain relief. The importance of activity-related pain suggests that routine pain assessment should specifically focus on this problem, as well as spontaneous pain. |s-t0 Our experience suggests that it is extremely important to set realistic goals for pain relief, lest unrealistic goals increase the level of frustration experienced b) the patient, family, and staff. For most patients, freedom from pain with activity is unrealistic,se-u and, indeed, it
VoL 5 No. 2 April 1990
Character of Advanced Cancer as Termi~d Illness
Tob~ 8 Symptoms Volunteered by Less Than 5% of Advanced Cancer Patier~t~in Last 4 Wk of Life Panic attacks Altered body sensation Fear of being harmed by others Hallucinations Swollen girth Diarrhea Decreased vision Inability m sit Mouth sores Decreased memory Nightmares Unsteady gait Burning on urination Spaciness Double vision Hiccoughs jerky movements Itch Bioatedness Bladder spasms
sient, often encouraged a sense of comroi ,~nd predictability, which is itself therapeutic. As realistic goals are set, it is similarly important to distinguish pain from other symptoms. We have often observed that the patient, family, or staff may become very enthusiastic ~bout a new pain management approach, tacitl) believing that pain relief will result in the elindnation of all symptoms. Unfortunately, the relief of pain without the relief of other symptoms may focus attention on the latter, in somr cases markedly increasing the patient's distress. Ruminations about extent of disease and prognosis may also increase. These observations -Jnderscore both the importance of a comprehensive assessment of pain and other symptoms a~.d the need to balance hope with realism.
o~o~ s ~ u ~
may be appropriate for some advanced cancer patients to remain in bed continuously if contrnl of pain is not otherwise possible. Other strategies for treating activity-related pain in our population include supplemental doses of an analgesic ("rescue doses") prior to activity, the use of relaxation or distraction, and the identification of physical techniques or orthotics to support or guard the painful part or limit painful movements. Patients benefit from information abo~tt the pattern of their pain, including the precipitants that are identified and the daily variation; reassurance that exacerba* tions of pain are common, and usually tranTable 9 Number of Symptoms Other than Pain Volunteen~ per Patient 4 Wk Before Death and ! Wit Before Death (N = 90)
(%) Number of Symptoms
4 Wk Before Death
I Wk Before Death
I 2 3 4 5 6
7 (8) 19 (21) 26 (29) 26 (29) 7 (8) 4 (4)
7 (8) 17 (19) 22 (24) 19 (21) IS (14) 6 (7)
7
I (l) 0 (0) 0 (0)
~ (3) 2 (2) I (D
S
89
The patients in this survey were administered a variety of opioid drugs. Although morphine has been suggested by the World Health Organization (WHO) as the drug of choice for severe cancer-related pain. ss this is based on its wide clinical use and availability, rather than on unique properties of the drug. Clinical experience suggests that there is remarkable variability, both within an individual and among advanced cancer patients, in the efficacy and side effects associated with the different opioids.7 The selection o f an opioid in this group o~ patients is thus largely empiric, based on the patient's previous experience with opioid drugs, tbe effe,:tiveness and side effects of the current analgesic regimen, and a variety of other factors (eg, age, medical status, and compliance). A change from one drug to another is frequently undertaken in an effort to improve analgesia or reduce side effects. The most common indications for switching opioids in our population were (i) inadequ2te pain relief with excessive side effects, usually sedation or mental cionding; (2) progressive pain leading to the need to administer an opioid comr~only used on the third rung of the so
