- Email: [email protected]
Coyle and colleagues respond
To the Editor: I. Coyle N. A~e~llart J, Foley KM,
~~)rtetkoy WK.
character of t~rltk~l~alilllness in IIPk’~tdv~ttt~~tlc;1ttcer patient: pain and other syt~ptonlsdurittg the last four weeks of life. J Pain Symptom Mnnage 1990;5:83-93. 2. Walsh ‘I’D. Continuing CitE in it tnedical center. ‘Ihe Clt?v&md Clinic ~ot~~~~~~t~~tl~ Palliative CillV .%rvice. J Pain Symptom M~tttage ~~~9~)~5:2~3-27S. 3. Twynross KG, Ventitfk~dda V, eds. The contit~uing care of terminal cancer patients. oxford: Pergitmott, 1980.
We ~elco~~~ the o~~ort~~~ty
to respond to Dr. Several of relevant to clinical practice and research in palliative care. Dr. Glare, Ms. Krech, and Dr. Walsh first note some tr.ethodological problems with our survey. We i~ck~ow~ed~~ that our results suffer from the usual difficulties inherent in a retrospective survey. We view these resttlfs as preliminary data in ueed of confirnxition through follow-up prospc”:tivc surveys. Nonetheless, we
Glare, Ms. Krecb, and Dr. palsy. the issues they raise are particularly
believe tlMt
lhk! &tit
ilR! W0Fthy
of ~~~~~t~~~~
the ~~~~~(~~~ we ~~~1~~~~s~~~~ in our lqxr it4Ti~t~* It
7. Miller KU, Walsh TD. Psychosocial aspects of palliative care in advanced cancer. J Pain Symptom Manage 1991 ;G:24-29. 8. Reuben D, Mor V, Hiris J. Clinical symptoms and le~~g~~lof survival in ~ttienls with terttlitt~tl CiLI1~C~. Arch Intern Med 19~M:l4S:l5S~l59~. 9. Norton WS, Lack SA. Control of symptoms other than pain. In: Twycross KC;, Ventafridda V, cds. The continuing care of terminal cancer patients. Oxford: ~crgam~n, 19SO:lG9-17~, 10. Wail ‘1’D. Oral morphitte pain. Pain 19H4;lH:I-1 I.
in rhrottir
cancer
11. Walsh ‘I’D, Saunders CM. Oral tttorpltine for relief of chronic pain from cancer. N En!;1 J Ned 19~1;3~5:1417* 12. World Health ~rg~tiii~;ttit~n, Cancer Rtitt Relief Geneva: WHO. 1986.
Profpnl.
13. Mount LJM. Narcotic analgesics. In: ‘l’wyct’oss KG, Venlafridda V, cds. The continuing care of tertninal cancer patients. Oxford: l’ergatnott, 1980: 102-104. 14. Walsh TD. Common misunderstandings about the use of morphine for chronic pain in advanced cancer. CA 1985;35:lti4-169. 15. ‘I‘wycross KG. Strong ~9~4;3:10~133.
analgesics.
Clitt Ortcol
16. Hoskin PJ, Hanks GW. The managetnent of symptoms in advanced cancer: experience in a hospital-based continuing care unit. J Roy Sot Med 1988;81:341-344.
for
and re-
/)CIt)W.
is certainly frtte th;tt the prev;de~e
r;ttes WC
rcpttrted !i)r the various symptoms were clil’lCr* ent ~IWII IIWS~ tkwibed in earlier ~~u~~ic~~tiotts. C)IH data ~iocut~~erlted sy~~l~tot~~s that were volumeered by the patient, and hence, were distressing enough to be mentioned. Although we agree that symptom prevalence may have been higher if data were available from the larger sample (on+half of the patients were excluded because they were lost to follow-us or died after being followed for less than I t-no in the program), it is also true that studies employing a symptom checklist, such as the National Hospice Organization study, are likely to identify a higher prevalence than those, like ours, thitt rb’cord only s~)(~rltilr~e~~tlsly ~les~~ribed sytl~l~t~)~~ts. ‘I’his difi&encc may have clinical significance,
since volunteered symptoms probably reflect those that are in need of therapy, at least in the setting of a supportive care program that enc~~urages communic~ttion betweer~ patient and clinician. In this regard, it is nor surprising that all patients had pain when referred into the program, but only 35% and 54% identified pain as a problem at the two data collection points0 Pain in the remainder of the patients was adequately controlled and no longer an overriding problem for them. Similarly, the 4%~‘7% prevalelice of constipation is again not surprising given our aggressive treatment of this symptom, and indicates that this symptom continues to be a problem for a stnall minority of patients. We do not accept 6ha6 our patietlt~. w~~~~~~ we called a “subgroup of difficult to manage advanced cancer palictlls,” are ty~9iCkllOf’ the patients referred to our palliative care service.
They
represent
only 5%
of patients referred to our Pain Service and are referred for the specific reasons outlined in our paper. As noted. many of these patients chose to remain in active therapy until close to death, and that in itself makes them a special population. We do perceive these patients as special cases, difficult to assess adequately x.4 problematic from a treatment perspe&ve. Studies of palliative care populations,
such as those cited by Dr. Glare,
MO, Krech, and Dr,
pr0blem pEllients>
Walsh, do nor describe these
Finally, we must admit that we are confused about the reference to a nurse coordinated model. The Supportive Care Program is a model of collaborative practice among nurse, physician, and social worker; there is strong ongoing physician input. In such a model, the rather chauvinistic remark about nurses (in a “nurse coordinated model the anal&&c LIPproach be simple”), has releIf the patient is challenging, as were the pAnta we ~~~~s~.~~~~e~, dn i~~~~r~~sc~p~it~~~ry team may be the best model of care. In this model, ilS well as others in which physicians play a lesser role, lhe nurse may have tht‘ expertise tlWCSSi4ry 10 make all rlinisnl d&&ma wirh respect IPI sympfom con&. The aul tnrrs point Qul the tTti\lty in;rdquaries of out’ dm, and we ccmwr rhnl our repan raiws twre
yuestians ham ii mwm.
N~~i~~~l~~l~ss~
WC rhmughr
it was important to describe a pipulation &dying cancer patients who, in CXMIWiiSt to the comments by Dr. Glare, Ms. Kreeh, and Dr. Walsh, are not typical palliative care patients hut are, father, represemalive of a c~~~~ll~l~~~n~ subgroup seldom discussed in the palliative care liter&tr. We do not believe that it is helpful for authorities to suggest that “established rwarmm guidelines” ;~ro?inviolate, or that problem ciises da not exist because every patient does weli when rhe!x guidelines are applied, We ;tgrec that there are enormous gaps in Ihe literilture, ad this bcr, combined with our recognition of the remarkable variability that characterizes these patients, inhibits us from the type at doctrinaire comments expressed by Dr. Glare, Ms. Krech, and Dr. Walsh. We agree that more systematic:rcxarch is needed in this population, but we also continue 10 believe that clinical descriptions that define the spectrum af patient problems and trealment approaches have value,
Nessa Coyle, RN Jean Adelhardt. RN Kathleen M. Foley. MD i4t4d RUSselI K. Portenoy,
Pain Service Memorial Sloan-Kettering New York. NY
MD Cnncer Center
~~)rtetkoy WK.
character of t~rltk~l~alilllness in IIPk’~tdv~ttt~~tlc;1ttcer patient: pain and other syt~ptonlsdurittg the last four weeks of life. J Pain Symptom Mnnage 1990;5:83-93. 2. Walsh ‘I’D. Continuing CitE in it tnedical center. ‘Ihe Clt?v&md Clinic ~ot~~~~~~t~~tl~ Palliative CillV .%rvice. J Pain Symptom M~tttage ~~~9~)~5:2~3-27S. 3. Twynross KG, Ventitfk~dda V, eds. The contit~uing care of terminal cancer patients. oxford: Pergitmott, 1980.
We ~elco~~~ the o~~ort~~~ty
to respond to Dr. Several of relevant to clinical practice and research in palliative care. Dr. Glare, Ms. Krech, and Dr. Walsh first note some tr.ethodological problems with our survey. We i~ck~ow~ed~~ that our results suffer from the usual difficulties inherent in a retrospective survey. We view these resttlfs as preliminary data in ueed of confirnxition through follow-up prospc”:tivc surveys. Nonetheless, we
Glare, Ms. Krecb, and Dr. palsy. the issues they raise are particularly
believe tlMt
lhk! &tit
ilR! W0Fthy
of ~~~~~t~~~~
the ~~~~~(~~~ we ~~~1~~~~s~~~~ in our lqxr it4Ti~t~* It
7. Miller KU, Walsh TD. Psychosocial aspects of palliative care in advanced cancer. J Pain Symptom Manage 1991 ;G:24-29. 8. Reuben D, Mor V, Hiris J. Clinical symptoms and le~~g~~lof survival in ~ttienls with terttlitt~tl CiLI1~C~. Arch Intern Med 19~M:l4S:l5S~l59~. 9. Norton WS, Lack SA. Control of symptoms other than pain. In: Twycross KC;, Ventafridda V, cds. The continuing care of terminal cancer patients. Oxford: ~crgam~n, 19SO:lG9-17~, 10. Wail ‘1’D. Oral morphitte pain. Pain 19H4;lH:I-1 I.
in rhrottir
cancer
11. Walsh ‘I’D, Saunders CM. Oral tttorpltine for relief of chronic pain from cancer. N En!;1 J Ned 19~1;3~5:1417* 12. World Health ~rg~tiii~;ttit~n, Cancer Rtitt Relief Geneva: WHO. 1986.
Profpnl.
13. Mount LJM. Narcotic analgesics. In: ‘l’wyct’oss KG, Venlafridda V, cds. The continuing care of tertninal cancer patients. Oxford: l’ergatnott, 1980: 102-104. 14. Walsh TD. Common misunderstandings about the use of morphine for chronic pain in advanced cancer. CA 1985;35:lti4-169. 15. ‘I‘wycross KG. Strong ~9~4;3:10~133.
analgesics.
Clitt Ortcol
16. Hoskin PJ, Hanks GW. The managetnent of symptoms in advanced cancer: experience in a hospital-based continuing care unit. J Roy Sot Med 1988;81:341-344.
for
and re-
/)CIt)W.
is certainly frtte th;tt the prev;de~e
r;ttes WC
rcpttrted !i)r the various symptoms were clil’lCr* ent ~IWII IIWS~ tkwibed in earlier ~~u~~ic~~tiotts. C)IH data ~iocut~~erlted sy~~l~tot~~s that were volumeered by the patient, and hence, were distressing enough to be mentioned. Although we agree that symptom prevalence may have been higher if data were available from the larger sample (on+half of the patients were excluded because they were lost to follow-us or died after being followed for less than I t-no in the program), it is also true that studies employing a symptom checklist, such as the National Hospice Organization study, are likely to identify a higher prevalence than those, like ours, thitt rb’cord only s~)(~rltilr~e~~tlsly ~les~~ribed sytl~l~t~)~~ts. ‘I’his difi&encc may have clinical significance,
since volunteered symptoms probably reflect those that are in need of therapy, at least in the setting of a supportive care program that enc~~urages communic~ttion betweer~ patient and clinician. In this regard, it is nor surprising that all patients had pain when referred into the program, but only 35% and 54% identified pain as a problem at the two data collection points0 Pain in the remainder of the patients was adequately controlled and no longer an overriding problem for them. Similarly, the 4%~‘7% prevalelice of constipation is again not surprising given our aggressive treatment of this symptom, and indicates that this symptom continues to be a problem for a stnall minority of patients. We do not accept 6ha6 our patietlt~. w~~~~~~ we called a “subgroup of difficult to manage advanced cancer palictlls,” are ty~9iCkllOf’ the patients referred to our palliative care service.
They
represent
only 5%
of patients referred to our Pain Service and are referred for the specific reasons outlined in our paper. As noted. many of these patients chose to remain in active therapy until close to death, and that in itself makes them a special population. We do perceive these patients as special cases, difficult to assess adequately x.4 problematic from a treatment perspe&ve. Studies of palliative care populations,
such as those cited by Dr. Glare,
MO, Krech, and Dr,
pr0blem pEllients>
Walsh, do nor describe these
Finally, we must admit that we are confused about the reference to a nurse coordinated model. The Supportive Care Program is a model of collaborative practice among nurse, physician, and social worker; there is strong ongoing physician input. In such a model, the rather chauvinistic remark about nurses (in a “nurse coordinated model the anal&&c LIPproach be simple”), has releIf the patient is challenging, as were the pAnta we ~~~~s~.~~~~e~, dn i~~~~r~~sc~p~it~~~ry team may be the best model of care. In this model, ilS well as others in which physicians play a lesser role, lhe nurse may have tht‘ expertise tlWCSSi4ry 10 make all rlinisnl d&&ma wirh respect IPI sympfom con&. The aul tnrrs point Qul the tTti\lty in;rdquaries of out’ dm, and we ccmwr rhnl our repan raiws twre
yuestians ham ii mwm.
N~~i~~~l~~l~ss~
WC rhmughr
it was important to describe a pipulation &dying cancer patients who, in CXMIWiiSt to the comments by Dr. Glare, Ms. Kreeh, and Dr. Walsh, are not typical palliative care patients hut are, father, represemalive of a c~~~~ll~l~~~n~ subgroup seldom discussed in the palliative care liter&tr. We do not believe that it is helpful for authorities to suggest that “established rwarmm guidelines” ;~ro?inviolate, or that problem ciises da not exist because every patient does weli when rhe!x guidelines are applied, We ;tgrec that there are enormous gaps in Ihe literilture, ad this bcr, combined with our recognition of the remarkable variability that characterizes these patients, inhibits us from the type at doctrinaire comments expressed by Dr. Glare, Ms. Krech, and Dr. Walsh. We agree that more systematic:rcxarch is needed in this population, but we also continue 10 believe that clinical descriptions that define the spectrum af patient problems and trealment approaches have value,
Nessa Coyle, RN Jean Adelhardt. RN Kathleen M. Foley. MD i4t4d RUSselI K. Portenoy,
Pain Service Memorial Sloan-Kettering New York. NY
MD Cnncer Center