The Relationship of Pain and Symptom Management to Patient Requests for Physician-Assisted Suicide Kathleen M. Foley, MD
Studies of public attitudes about cancer dem“mtrate that pain is one of rhe roost feaxd consequences. In one survey. 69% of cancer patients reported that they would consider committing suicide if their pain was not adequately treated.’ Unconrrolled pain has also been reported 1” be an important contribudng factor in a variety of studier that have assessed cancer patients who are ar risk for suiAde.2a I” a 1988 survey of California physicians, 57% of those responding reported that they had
!xen asked by terminally ill patients to hasteo dcaalh. Persistent pain and terminal illness were the primary reasons for such requests for physician-assisted suicide.* These concerns of padents are nor “ogrounded. Prevalence studies of cancer pain reveal that one-third of cancer patients in active therapy. and two-thirds of parients with far-addvaoced disease, have significant pain. requiring the use of analgesics.““’ Studies from le World Health Organizaalioo’s (WHO) Caocer and Palliative Care Unit show rhat 4.5 million padems from developing and developd countries die each year with uncontrolled pain.“.” In the last I5 years, the management of the cancer padent with pain has evolved to include a comprehensive body of knowledge. The pain
syndromes that occur in this patient population. and the appropriate diagnostic and thempeudc approaches to assess and manage them have been identified.” Several studies have determined the psychological factors that contribute :o the pain complaint and the degree fo which psychiiogigl distress (suIferiogj contributes and influences the pain complam:.‘4~‘5 The :ypes of patients with cancer pain have also been identifiedand clear distinctions have been made between the psychological factors in padems with acme postoperative pain, who receive a cotalive surgical procedure, and the patient with chronic pain fmm far-advanced disease. How the meaning of pain influences the patient’s psychological state and coping style, and how these factors influence the choice of treatmen: strategies has also been better defined. Methoddogies :o assess pain and other symp :oms have bea developed that have allowed for improved commmdca:ion between the caredver and the oaden:, and omvide a simdified &mmunica:io~ system to ;Lescribe pain &ensitv. oaio relief. and osvcholoeical distress.” C&&en:ly. sophi&:ed pharmacologic methodologies, that allow for measurement of analgesic drugs in body fluids and correlation of lhese levels with patient’s pain relief. have led to the elaboration of scientitic guidelines for the use of analgesic drugs in this patient population.“” Notwithstanding these advances, however, numerous reports have documented that cancer patients are inadequately treated for their pain and have delineated some of the barriers to patients obtaining appropriate pain ma&ernen~‘~~ They include lack of koowledm by health care pro&ssionals in the use of ph&& cologic approaches :o cancer pain management; a fear of addiction by physicians, patients. and families; and the presence of restrictions in the health care system tba: interferes with the delivery of effective pain management. For the iart 16 years, the Pain Research Program a: kf=motii Sloan-Kettering Cancer Cellter. has evaluated and rreared cancer patients with pain and has conrribured to thii now erteosive, albeit incomplete, body of knowledge about cancer pain. Working closely with psychooncologists who have developed scientific approaches :o the evaluadon and treatment of patients with psychological complications of
’
-
cancer, we have gained a broader appreciation of the various aspects of pain and psychological distress that occur in this population. In this setting. we have seen the pain and suffering tha: such patients and families endure and we repeatedly have seen how existing barriers prevent patients from receiving adequate symptom contml and cancer pain management. We frequently see patients referred :o our Pain Clinic who have considered suicide as an option. or who request physician-assisted suicide because of uncontrolled pain. We commonly see such ideatioo and requests dissolve with adequate control of pain and other symp. tams. using combinations of pharmacologic, neumsurgical. anesthetic, or psychological ap. proaches. At the present time. there are few highly trained physicians in cancer pain maoagemeo: or psychooncology whose main interest is :o place a high priority on pain managemen:, symptom control, and psychological support for these patients with far-advanced disease. National and international orgaoizations like the American Pain Society. the International Association for the Study of Pain, the American Society of Hospice Physicians. and the Intermtiooal Psycbo.Oocology Society have all only been formed in the ks: 5-15 years. lmplementsdon of this expertise io the care of this population of patieou thmugh training and education of physicians as well as the education of pa:ieo:s sod families is the firs: step in providing patients with access to care that will facilitate their choice of options. Therefore, any debate that focuses on the needs of the dying patient. and their options for care at the end of life mw: recognize that there is an expanding bcdy of knowledge and a small but growing number of trained clinicians who have addressed the special needs of this population and have developed guidelines for the evaluation and treaimen: of pain, other symptoms, amI psychological dirmss.2’w23
Barriers to Effective Cancer Pain Maqpent L.mkof Know* The World Health Organization, the American Medical Association, the American College of Phyriciam, and the American Pain Society
have sun~ested the roncem that all health care professionals need to lead how to manage pain wmotoms in Datients with cancer.“~‘*~*‘~?‘.” To dare, there are no formal education programs for medical students or house staff. and medical board examinations do not include questions that address these issues of cancer pain management. Few cdncercenters or major medical teaching programs have experts in cancer pain to facilitate such educational programs. This lack of education of physicians has impacted on care for lids pr+e!xion of patients. The majority of dying cancer patients are cared for by primary care physicians and nurses who have not been exposed to broad educatiomd programs to develop and foster their knowledge about pain management or symptom control in terminally ill cancer patienrr. The development of hospice programs throughout the United States, outside of the established medical setting. reflects the enomwus need for such medical care and expertise that. to date, has not been fully integrated into medical education or medical care programs. In the New England Jmmd o/Mcdicinr article supporting physician-assisted suicide, the panel pointed out that education about symptom control, specifically pain management, was sorely needed and should be fostered by nonphammceudcal organizations.‘5 To date, it is to the credit of the pharmaceuriral industry that drugs. drug formulations, and broad educational programs directed at physicians. nurses, and other health care professionals have at least attempted to remedy a problem that none of the tnijor cancer o&&ations had considered a t~rioritv in the l9gOs. It is only recently that I;oth tde National Cancer Institute and the American Cancer &ie:y have considered cancer pain education on their priority list for the next IO years. I
.
Few of Add& Further compounding this lack of knowledge about pain assessnunt and treatment are attitudinal factox that have been clearly demonstrated to prevent patients from receiving ridequate man~gemeni with opioid drugs. Several studies have demonstrated that fear of addiction is an oveniding concern for physiciws, patients, and families. Opioid drugs are the mainstay of therapy for the patient with cancer and pain, ye, these same drugs that are so effective in relieving pain are also drugs abuser’
by addicts who rake them for mood effects. There is a very clear distinction between the use of these drugs for medical purposes, that is. pain r&l: and for recreational purpaes. Of note. more than 85% of cancer patients report dysphoria rather that] euphoria following the administration of these drugs.“’ More imporvastly. caner patients are reluctant to take even small doses of opioida because of this overwhelming (ear. Recent studies have shown that the medical we of thex drum is safe and does not cause psychological I dependence or addiction.Y”“7~Yq Cancer oatients receivinr these drugs may become ph&ally dependent upott the dlug. that is. the drug most be withdrawn slowly to prevent signs and rymptoms of withdrawal. This state is very different from addiction or psychological dependence which is a behavioral pattern of drug use characterized by continual craving for the opioid with compulsive drug-seeking behavior and an ovemhelming involvement in drug procurement and use. The chmnic use of opioidr in cancer pain patients has pnwided a natural experiment to study the aspects of physical and psychological dependence in a medical setting. Such studies have shown that it is possible for patients to be physically dependent without evidence of psychological dependence or addiction. Concurrent with this fear of addininn on the part of physicians and patients is a concern by both, more commonly physicians, that pain control is a lorm on euthanasia. This was mmt poignamly debated in the JAMA piece, “It’s Over Debbie,” and the furor of let& and anicles that followed.“” Treatment of pain is never a form of Its intent, iis goal. and the conditions in which physicians and patients interact are directed to the management of symptoms. In this article, a hospitalired dying cancer patient with pain is given an intravenous dose of morphine by a fatigued and overworked resident who hardly knows the patient. The patient. as described in the article, was receiving totally inadequate pain managemetn, and the dose ofdrug given would be unlikely to kill her. The patient died from a respi&ry arrest. What this article captured was the desrnir of a physician who decided that death for the patient was a better option than symptom control without any clear discussion of the patient’s options for treatment and without any attempt to provide better control of pain or management of
euthanasia.
psychologic dim.%% In far:, respiratory depre;sion is not a significant limiting factor in the management of patients with pain because with repeated doses, tolerance develops to this effect. allowing for adequate treatment of patients with estalating doses without respiratory cornpromisc.)’ The opioid drugs are commonly used to treat a variety of symptoms in patients with far-advanced disease who are actively dying. Morphine is used to treat the dyspnea associated with acute respiratory distress and to provide sedation in rhe patient with severe pain and anxiety prior to death. In the appmpriate use of opioid drugs in this patient population. the intent is always to treat the symptom of pain and/ or suffering. Its intent is never to kill the patient. However, confusion exists in the minds of patients as well as physicians about the role of these drugs in the care of the dying patient. An open discussion among patienu and families is critical to dispel cooceros and fears as well as to provide an open dialogue for the appropriate care of not only pat”. but tine more global aspects of psychological diexress or suffering. This fex and confusion about opioid drugs is only part of the greater issue of ambivalence that families, patients, and physicians have when a patient is dying. The ambivalence on the part of the patient, family, or the physician focuses on their desire to prolong life versus the need to alleviate suffering. It is difficult to define treatment plans for a patient in which the goals of therapy are to prolong life rather than to alleviate suffering. The risk&en&u of any approach are viewed very differently for the patient with acute postoperative pain than for the actively dying patient. LGstence
of Rrshicliau
in the
Health
care system At the current time, there are inadequate pro. visions for medical support of pain managemeni rymptoom control, and pychological distress for cancer patients. either in the hospital or at home. Control of pain is not considered a reason for admission to hospital and terminally ill patients cannot be admitted for this purpose alone. There are inadequate community resources and expertise to manage cancer patients with pain at home. Provisions to pay for high technological care for cancer patients are lack-
ing, yet studies show that prior to death. cancer pain patients will require at least two different routes of dros adm&istration to obtain adequate relief. The increasing use of subcutaneotts. intravenous, epidural, and intrathecal routes of drug administration has facilitated patients discharge fmm hospital to borne. The high cost of pumps, drugs. and home care sopervision on a 24.hr basis makes this cam only available to a limited oumber of patients who have appropriate health care coverage. By rationing pain management on a financial ‘basis, patients are being forced to consider death as their only option. Another barrier is the kgal restrictions placed on narcotic prescriptions. In New York Stare, physicians tow complete special triplicate prescription forms; federal laws require each physician to have a special license to prescribe oarcotics. In New York City, only about IO%ZO$ of tbe pharmacies will even cany khedule 11 drugs. such as morphine, hydromorphone. and methadone. that are commonly used to treat padents with pain and cancer. In New Jersey, patients can receive only 120 tablets per prescription, even though they may require ‘ZOOor 300 tablets a month for adequate pain control. Strict regulations prevent pharmacists from dispen&w these drws on an etner~encv basis and ihese &trictive fe&xes further support the patient‘s fear that these drugs are “dangerous” for them?’ Although the discussion of these issues has focused on the oocer vatient in the United States, similar and even~gtvater restrictions to the availability of opioids exist for cancer patients in developed and developing countries. Because Holland has been used as an example of one country that provides options for the termication of life for the patient with faradvanced disease, it is also useful to focus on Holland to learn what is the level of knowledge of physickans who are managing pain and other symptoms in cancer patients at home. What options do Dutch pgtientr. have and to what extent can they seek ottt pain expertise before requesting physician-assisted suicide? Dr. Charles Vecht. a neuroa~ologist and pain expert, has spoken out against physicianassisted suicide in Holland, demanding better education of health care professionals and patients in pain management and symptom conI
I
pmgram. The org&adoo-of health care in Holland limits. in oart. the abilitv of the oatient to seek out care from other than their family physician if their symptoms are not adequately treated. Padeno must be referred to other physicians by their rreadng physician. Although hospice care programs exist. they are available for only a limited number of patients. Themfore. before we consider the Dutch aperience as a model of physician-assisted suicide. detailed assessment of the physicians’ knowledge base in the care of terminally ill patients as well as patients’ options for sophisticated palliative care is critical to determine iI_they are, in faa. offering all possible trearment options to patients. The current Dutch experience suppordng physician-assisted suicide has been an impetus to the WHO Expert Panel on Cancer Pain and Palliative Care that met in July of 1990 to issue the following recommendation which states: “Governmenrs should insuw rhar they have dsvoted specific attention to ihe needs of their citizens for cancer pain relief and palliative care prior to considering legislation regarding eutbanasia.“‘P This rtiommendation supports the coostroct that before considering options for death. govemmenrs should look at their medical care system and their provisions for adegoare win relief and svmptom contml. As p& of’ its global can& care program. rhe WHO Cancer and Palliative Care Unit ha, rcquested that governments accept a cancer p*in relief policy a6 pan of their national legislation to insure that cancer patients receive adequate treaunent for their pain. It has also requested that health legislators develop programs to provide palliative care for padents with faradvanced disease.
,
Im@actof Pain on Qrda$
.
of Life
These barriers represent the external forces that have interfered with patients receiving adequate treatmenr. However, there are specific aspects of pain that, in part, also act as internal barriers or factors. Penisrent pain interferes with parienu’ quality of life and this. in turn. influences a patient’s choice about suicide or physician-assisted suicide. From a series of studies, there is evidence to suggea that pain
ap&rr;o
parientr and that pain relief improve quality of life.5,‘““‘*.w,“’ One common statement made by patients is that their pain is so wvere Ihal they are unable to begin to deal with the issue of monalirv. inrerlerine with their ability to develop coping mechaois& to deal with the dying process. In eying to *ease apart dlc aspecu oi pain that influence a padent’s quality of life. the pain’s actual. as well as perceived, chronicity is an imporuot factor. Pdliems cm endure periods of PCUIPpainful illness. However. when it persists. when it appears not to improve, and when the patiem begins to believe that there is no pain relief available, p&ems express sigoifiana degrees of helplessness and hopekssoess. Fishman and colleagues directly assessed patients’ intensity of pain. degree of pain relief. and mwd. and compared these resula LOa series of sophisticated psychological tests that evaluated anxiety, depression, and coping stvles.” Fishman learned that oatients can tolerate almost any intensity of piio if they perceive that oain relief is oorsible. The decree to which patients obtain bain relief much more closely influences their mood than does the pain’s intensity. This obrervadon is particularly important lxcause b focuses on the fan that patients’ mwd disorders are enormously influenced by the actual and perceived belief of pain relief. When patien:s are told that there is no way to treat their pain. when patients perceive that there is no hope for adequate treatment of their pain, psychological distress becomes markedly exacerbared and in uro. leads patients to consider various options. such as suicide or requests for physician-assisted suicide. Tbis psychological distress is alsoconfounded by the meaning of pain for each individual patient. For padents who are in acdve therapy (for example, patients undergoing bone marrow transplant), the promise of a cure often means tolerating signilicant amoums of pain. For those patients who are told that there is no primary therapy Tar their tumor. or that all therapies have failed to adequately treat their nonor, pain is equated with dying. In our experience. the majority of padents typically minimize their pain symptoms as they deal with all the other issues t&led to the treaunent of their disease.
When the treatment of their disease fails, they focus on the treatment of this symptom as a new priority. Clatifying the meaning of the pain far the patient can help to understand its impact on the !evel of psychological distress in the patient.
P.ychAgid Fackns and Suicia%R&h Thus,the meaning of pain, its chronicity,
and the lack of pain relief all contribute to the patient’s psychological morbidity. It is also important to recognize that psychological and mood disturbances sxem to be au essentia! cofactor in raising the risk of suicide in cancer pain patients. It is well recognized that the thoughts of suicide occur quite frequently in the setting of advanced cancer. Yet, there is cmmoversy about the degree of suicidal ideation in such pa. dents. Some authors. such as Silvetfarb, have suggested that suicidal ideation is limited to those who are significantly depressed, reporting rhat only 9 of I46 breast cancer patients had suicidal thoughts.8 From studies at Memorial Sloan-Kettering Cancer Center, suicidal risk evaluation ac. counted for 8.6% of psychiatric consttltatiot~s usually requested by staff in response to a pa. t&t verbalizing suicidal wishes.% In 185 cancer patients with pain, we reported that suicidal ideation occurred in 17% of the study population.’ The majmity of these patients reported suicidal ideation without intent to act. Of note. the suicidal ideation was not directly related to pain intensity, but was strongly related to the degree of depression and mood disturbance. In this group of patients, pxceptions of pain relief had more do with aspects of hopelessness they had to do with the patient’s perception of pain intensity. Table 1 from Dr.
than
to
%bfcl Cancer Suickk Vtdnembily
Factors
Breitbart’s studies identifies scone of the factors that make cancer patients vulnenble to suiEidal ideation?’ All of these factors should be considered in assessing the suicide potential cd an individual patient and in providing a framework for intetwmicm in orderto pm&L alternatives to suicide. These additional factors inclttdin~ pain. delirium, depression. and fatigue, cati more commonly with far-advanced discau. Depression is a factor in over 50% of all suicides and cancer patients are at 25 times greater risk for depression than is the general population. Data from the Psychiatry Service at Memorial Sloan-Kettering Cancer Center show that in suicidal cancer patients, one-third had a maim depression. and more thm half bad an adj&ment disorder, usually a.wciated with depressed ot anxious and depressed mood.‘5 Hopelerrne~s is the key variable linking depression to suicide and is a significantly better predictor of completed suicide than depression alone. In studies from Sweden. the incidence of suicide was signilicantly greater in cancer patients who were offered no further ueatment and no further mntact with a health care system.‘,‘” Another mtnm~n factor associated with suicide is the presence of delirium. Data fmm Memorial Sloan-Kettering Cancer Center have shown that approximately 20% of suicidal cancer patients had an organic brain syndrome at the time of their psychiatric evalttati~n.‘~ The presence of a mild delirium with a loss of impulse control can commonly set the stage for patients to act out suicidal thoughts, pxticukwly in a patient who is already depressed and wiously ill. Delirium may augment the patient’s sense of helplessness- and loss of control. Control relates to both the exhmne lass of control induced by symptoms or deficits due tocancer or its treatment, as well as to an excessive need on the part of atte padents to be in control of all aspects of living and dying. PhysicaI symptum~ and sians induced bv tbe cancer or c&& treatment~such as pat-a&esis. panpkgirt, loss of bowel and bladder control. amputation, inability to eat or swallow, all demonstrate to the patient their inability to control their bcdily functions. EDiscdes of confusion or hallttcination front th; opioid drugs are very distress. ing to ptients who perceive that they are losing control of their minds. These symptoms and
I
.
signs increase the risk of suicide, particularly in patients who are already psychologically dis rreacd?” The preexisting prychological history of the patient is critical in evaluating all these factors because personality disorders with wlf-deotrwtive behavior drastically tncwase the risk of stdtide. A history of alcohol abuse is second only to affective illness as an associated factor in as many as SO% of suicides. A family history or a prior suicide attempt both inlioence again the vtdnerahility factors for an individual patient with painandcancer. Lastly. fatigueon the part of the patient. as well a3 on the pari of the physician, and family, increws the risk&suicide in the cancer patiem5 With advances in cancer treatment, increased surviul is accompanied by increased complications, hospitalizations, and expctue. Symptom control has become a prolonged process with frequent advances and setbcb. The dyicq prwess can become extremely long and arduous for all concerned. Limited patient resources limited physician input, fataiiy financial concerns. frmtil~ fatigue. and psychiatric disturbances in the familv can all lead the patients to think that it wottlti be better for everyone. if dtey were dead. These aspects of exhaurtion and fatigue appear to be the crowning blow to the patient and family, who have previously coped relatively well hut become overwhelmed by poorly controlled pain and the depletion of financial resources. Breitbart has outlined the assessment of sttitide risk and the appropriate interventions (IIble 21. To date, there is a lack of sophistication by h<h care pmfessionalr in ttnbrstanding these vulnerability factors as well as in providing appropriate interventions. He has advised that the goal of intervention should be to provide effective management of cancer patients’ psychological distress, pain. and other symptoms as an alternative to suicide. However, this goal is not widely shared by all health care professionals. In fan, some view suicide or voluntary euthanasia as rational alternatives for those already dying and in distress. They view suicidal ideation or a request to hasten death in a cancer patient as a rational act that is unencumbered by psychiatric disturhance.J’~s8 Rational suicide is an oxymoronic statemettt. The data accumulated to date indicate that a
Establish rappon with an empathetic approxh Obtain patient’s utxdrtstmding ol illnsrr and prcwnt Iymp*oms Ass31 mental status (intmtal control) Asses vulnerability vatiablcr: pain cmtrol Aasrss rvppln system eaterna, mntml, Obtain history uf prior emotional problems or prycbiatric dirden Obtain tsmily birtory Re-zord prior ruiride threats. attempts Asscrr suicidal thinking. intent. plans
Evaluate need lor one-to.one nurse in haapital or companion at home; formulate t:eatmettt plan. immediate and long wrm
significant percentage of patients, more than the majority. have significant psychiatric morbidity influencing their requests for death. If the majority of physicians caring for patients with cancer and pain or psychiatric complications of cancer have not been educated in there vulnerability factors and approaches to treatment. then what optiotts might patients have if their only medical resottrcc~~ do not place a high priority in treating this disorder? The development of various types of condnuing care programs to manage patients with faradvanced disease and cancer has helped to provide a level of expertise to community phy sicians as well as to patients and Fttmilies in dealing with these issues. Hospital and home-based hospice programs, hospital-bwed plliative care programs and varying types of supportive care and continuing care pro~raros have been created but are insuBicient to meet the increasing number and medical care needs of this patient population. Of interest, Canada, Australii, England. and Denmark, as examples, have all integrated palliative care services into their medical care system. At Memorial Sloan-Kettering Cancer Center, we have developed a program of continuing care referred to as the Supportive Care Program in order to provide better management of pain and other symptoms in patients at home and to begin to study the problems that influence a propriate care for this population of patients. V9 From our studies now in over 310 patients. it has become apparent that pain and psychological distress are only two of the many symptoms
that must be addressed in the care of this pap ulatio” of patients. In fact, patients have upwards of 20 symptoms that interfere with the quality of their life on a day-by-day basis. These are listed in Table 5. Each of these needs ap propriate symptom control and there is a growing and emerging literature deal with better symptom management for this group of patients. In short, there is a growing expertise in the managettzent of patients with advanced diseases. Such expertise can provide patients with options for treatment and there is a need to balante these treatment options with requests for tennii&on of life. In developing strategies for the care of patients with far-advanced disease, certain principles need to be adopted by health care providers. specihcally physicians. Physicians most treat their patients with unconditional positive regard. They most see as their responsibility the ttcatment of a patient’s pair+ symptoms, and psychological distress that commonly coexists in advanced illness. Physicians must be trained in
to
nbk
Revdence
3
of symptoms “olunt_
ky Advanced
Cmeer Pllienu 4 Wk and I Wk Reforr Lkath IN = 99)
References 1. Levi” DN. Cleeland CS. Dar R. Public attitudes towards cancer pain. Cancer 1985:56:2337-2339.
N (?b)
S”motom Fatigue
Pain
Gmeralilcd weakness Sleepiness Mental kazine*sIomfurion Anxiety wkZk”esS of kg Skortwss of breath Natlxa Decrearad hearing DePESSio” Loss of appetite Inability to sleep W’c&“es” of upper limb Co”Sk Reatksrnesslinitability Swollen limb ConstiPatio” Difficulty wallowing Pulmonary congestion Dizziness lnw”li”c”cc Dirncuky speaking Svurcc: Ref. 5.
these approaches, and medical education needs to be adapted to meet these broader educational demands. Cancurrently. psychological distress and fatigue in physicians. patients. and family need to be addressed, and approaches. surh as respite care and team managettwt. should be introduced into the health care system. Physicians must set the goals of therapy with patients and families. For the dying patient, the goal of therapy should be to alleviate suffering. Ambivalence in goal setting by the patient or the family “takes the physician’s mle more dilFtcult. Physiciatx should have open discossions with patients and families about these goals, and the patient’s requests for treatment or no treatment. The need for symptom control until death should be assessed early on in the course of treatment. Any debate that focuses o” options for termination of life for patients with far-advanced disease should first focus on assessing the availability of continuing care for such pal tients. Adquate pain relief. control of swptams. and &atttie”t of psychologic di;tr&s clearly alter patients’ requests to renninate lie.
4
1
2. Helig S. The San Francisco Medical Saietyeuthanasia survey. Results and analysis. San Franciwo Medicine 1988:61:24-34. 3. Rolund C. Suicide and cancer: 1. Demographic and swial ckarartcrbtts of cancer patients who cornmitted suicide in Swede” I973-,976. J Psychosoc Onrol 19&x5:3: 17-39. 4. Bolund C. Suicide and omcer: IL Medical and cam farlors in suicides by cancer patients in Swede”. 1972-1976. J Psyckosw Oncol ,985:9:31-52. 5. Coyle N. Adelkardt J. Foley KM. Ponenoy RK. Character of temdnal illness in the advanced cancer patient: pain and other ~ymptomsduring the last four weeks of life. J Pain Symptam Manage 19+9:5:8343. 6. Louhivuori KA. Hakama M. Risk of suidde among ca”cer patients. Am J Epidemiot 1979.109: 3w3. 7. Saltzburg D, Breitban W. Firkma”. Lt. Stiefel F, Holland J. Foley KM. The relationship of pain and deprwion tu suicidal ideation in cancer patients. Amer Sac Cli” One 1989:8:1215. 8. Silberfarb PM, Maurer LH. Cmntkamcl CS. Psychosocial aspffb of neoplsrtir disease. I: functional status of breast cancer patients during differes
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25. Wanmr SH. Rdcrman 1X). Ad&vein $1. Cmrc,, CK. Casem EH. Crr,,fwd RE. Hoot EW. Lu R. Moene,CG. SaSm P.Skme A. J. &phyri&n’s rerpunribilitg towrrd bqxknly ill patientr. N Eng,J Med ,98Y:YPI,:“44-“49.
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26. Haude RW, Waknrtein SL, Beaver WT. Clinical mc.asurc~ncn~olpain. In: Aealgctics. C. drbevcnr. cd. Ncr York Academic Pras. ,!%5. 27. Pork-r J, ,Jirk H. Addicrion rare in padents treated wnb nawxirs. N Eng, J Med. 1960:302:123. 28. Porlenoy KS. Chronic apioid tbempy in nonmalignant pain. J Pain Sympmm Manage 1990:5:S46. 29. Kelieving patient pain in a rrgukted environ. mrst: a nwdird dilemma far the ,990’s. I Pain Syl”pl”m wnage IwI:l(r”pp,,:I-6% ” 30. It’s over. Debbie (kuerr 1988:259:‘LO9~098.
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31. Foley KM. Clinkal mletance loopioidr. In: Barbaum AL Besran JM. eds. ‘Towards a new pharmacatherapy ol pain. Dahletn Konkrenze”. Chichester: John Wiley &Sons Ltd., ,W,;,R,-204. 32. km,, BR. Wisdon C. Wend C. Qualily oflifeas an wtwmr variable in management OScancer pain. Cancer 19S9;63(rupp,):232,-2327. 33. Shipper H. Levh M. Measuring the qualily OS life al caa~cer padents: the runcrional living indexcancer: development and valiiarion. J Clin Onto, 19w2:47zGw3. 34. Breitban W. Suicide Oncolwgy ,12:,:49-w
in
cancer
padems.
35. Breirban W. Cancer pain and suicide. In: Foley KM, BoniraJJ. Vuntrfridda Y. cds. Advances in pain ~~arcb and therapy. New YarL: Rilven Press. 1990:39%412. 2,. American Pain Society: Principles or analgesic use in the weatment of acute pain and chronic cancer pain. A rancise guide to medical practice. 2nd edition. Sk&k. Illinois. Amelican Pab, Society. ,989. 22. Health and Public Policy Committee. American College of Physicians. Drug therapy for severe chronic pain in terminal illness. Ann Intern Med 1983:99:870-873. 23. McGivney WT. Cook
CM.
The care 01 padents
36. Breitbar: W. Psychiatric mrnagement 01 cancer pain. Cancer ,9889:63:23X-2312. 37. Siegel K. Radonal suicide: consideradons for the clinician. Psychiatr Ann 198&34:77-83. 38. Siegel K. Tucked P. Radonal suicide and rbe terl&ally ill ca_r patient. Omega ,984;,5:263-269. 39. Coyle N. A model olcandnuby ofcare for cancer padems with chronic pain. hfcd Clin North Am 1937;71:259-270.
Studies of public attitudes about cancer dem“mtrate that pain is one of rhe roost feaxd consequences. In one survey. 69% of cancer patients reported that they would consider committing suicide if their pain was not adequately treated.’ Unconrrolled pain has also been reported 1” be an important contribudng factor in a variety of studier that have assessed cancer patients who are ar risk for suiAde.2a I” a 1988 survey of California physicians, 57% of those responding reported that they had
!xen asked by terminally ill patients to hasteo dcaalh. Persistent pain and terminal illness were the primary reasons for such requests for physician-assisted suicide.* These concerns of padents are nor “ogrounded. Prevalence studies of cancer pain reveal that one-third of cancer patients in active therapy. and two-thirds of parients with far-addvaoced disease, have significant pain. requiring the use of analgesics.““’ Studies from le World Health Organizaalioo’s (WHO) Caocer and Palliative Care Unit show rhat 4.5 million padems from developing and developd countries die each year with uncontrolled pain.“.” In the last I5 years, the management of the cancer padent with pain has evolved to include a comprehensive body of knowledge. The pain
syndromes that occur in this patient population. and the appropriate diagnostic and thempeudc approaches to assess and manage them have been identified.” Several studies have determined the psychological factors that contribute :o the pain complaint and the degree fo which psychiiogigl distress (suIferiogj contributes and influences the pain complam:.‘4~‘5 The :ypes of patients with cancer pain have also been identifiedand clear distinctions have been made between the psychological factors in padems with acme postoperative pain, who receive a cotalive surgical procedure, and the patient with chronic pain fmm far-advanced disease. How the meaning of pain influences the patient’s psychological state and coping style, and how these factors influence the choice of treatmen: strategies has also been better defined. Methoddogies :o assess pain and other symp :oms have bea developed that have allowed for improved commmdca:ion between the caredver and the oaden:, and omvide a simdified &mmunica:io~ system to ;Lescribe pain &ensitv. oaio relief. and osvcholoeical distress.” C&&en:ly. sophi&:ed pharmacologic methodologies, that allow for measurement of analgesic drugs in body fluids and correlation of lhese levels with patient’s pain relief. have led to the elaboration of scientitic guidelines for the use of analgesic drugs in this patient population.“” Notwithstanding these advances, however, numerous reports have documented that cancer patients are inadequately treated for their pain and have delineated some of the barriers to patients obtaining appropriate pain ma&ernen~‘~~ They include lack of koowledm by health care pro&ssionals in the use of ph&& cologic approaches :o cancer pain management; a fear of addiction by physicians, patients. and families; and the presence of restrictions in the health care system tba: interferes with the delivery of effective pain management. For the iart 16 years, the Pain Research Program a: kf=motii Sloan-Kettering Cancer Cellter. has evaluated and rreared cancer patients with pain and has conrribured to thii now erteosive, albeit incomplete, body of knowledge about cancer pain. Working closely with psychooncologists who have developed scientific approaches :o the evaluadon and treatment of patients with psychological complications of
’
-
cancer, we have gained a broader appreciation of the various aspects of pain and psychological distress that occur in this population. In this setting. we have seen the pain and suffering tha: such patients and families endure and we repeatedly have seen how existing barriers prevent patients from receiving adequate symptom contml and cancer pain management. We frequently see patients referred :o our Pain Clinic who have considered suicide as an option. or who request physician-assisted suicide because of uncontrolled pain. We commonly see such ideatioo and requests dissolve with adequate control of pain and other symp. tams. using combinations of pharmacologic, neumsurgical. anesthetic, or psychological ap. proaches. At the present time. there are few highly trained physicians in cancer pain maoagemeo: or psychooncology whose main interest is :o place a high priority on pain managemen:, symptom control, and psychological support for these patients with far-advanced disease. National and international orgaoizations like the American Pain Society. the International Association for the Study of Pain, the American Society of Hospice Physicians. and the Intermtiooal Psycbo.Oocology Society have all only been formed in the ks: 5-15 years. lmplementsdon of this expertise io the care of this population of patieou thmugh training and education of physicians as well as the education of pa:ieo:s sod families is the firs: step in providing patients with access to care that will facilitate their choice of options. Therefore, any debate that focuses on the needs of the dying patient. and their options for care at the end of life mw: recognize that there is an expanding bcdy of knowledge and a small but growing number of trained clinicians who have addressed the special needs of this population and have developed guidelines for the evaluation and treaimen: of pain, other symptoms, amI psychological dirmss.2’w23
Barriers to Effective Cancer Pain Maqpent L.mkof Know* The World Health Organization, the American Medical Association, the American College of Phyriciam, and the American Pain Society
have sun~ested the roncem that all health care professionals need to lead how to manage pain wmotoms in Datients with cancer.“~‘*~*‘~?‘.” To dare, there are no formal education programs for medical students or house staff. and medical board examinations do not include questions that address these issues of cancer pain management. Few cdncercenters or major medical teaching programs have experts in cancer pain to facilitate such educational programs. This lack of education of physicians has impacted on care for lids pr+e!xion of patients. The majority of dying cancer patients are cared for by primary care physicians and nurses who have not been exposed to broad educatiomd programs to develop and foster their knowledge about pain management or symptom control in terminally ill cancer patienrr. The development of hospice programs throughout the United States, outside of the established medical setting. reflects the enomwus need for such medical care and expertise that. to date, has not been fully integrated into medical education or medical care programs. In the New England Jmmd o/Mcdicinr article supporting physician-assisted suicide, the panel pointed out that education about symptom control, specifically pain management, was sorely needed and should be fostered by nonphammceudcal organizations.‘5 To date, it is to the credit of the pharmaceuriral industry that drugs. drug formulations, and broad educational programs directed at physicians. nurses, and other health care professionals have at least attempted to remedy a problem that none of the tnijor cancer o&&ations had considered a t~rioritv in the l9gOs. It is only recently that I;oth tde National Cancer Institute and the American Cancer &ie:y have considered cancer pain education on their priority list for the next IO years. I
.
Few of Add& Further compounding this lack of knowledge about pain assessnunt and treatment are attitudinal factox that have been clearly demonstrated to prevent patients from receiving ridequate man~gemeni with opioid drugs. Several studies have demonstrated that fear of addiction is an oveniding concern for physiciws, patients, and families. Opioid drugs are the mainstay of therapy for the patient with cancer and pain, ye, these same drugs that are so effective in relieving pain are also drugs abuser’
by addicts who rake them for mood effects. There is a very clear distinction between the use of these drugs for medical purposes, that is. pain r&l: and for recreational purpaes. Of note. more than 85% of cancer patients report dysphoria rather that] euphoria following the administration of these drugs.“’ More imporvastly. caner patients are reluctant to take even small doses of opioida because of this overwhelming (ear. Recent studies have shown that the medical we of thex drum is safe and does not cause psychological I dependence or addiction.Y”“7~Yq Cancer oatients receivinr these drugs may become ph&ally dependent upott the dlug. that is. the drug most be withdrawn slowly to prevent signs and rymptoms of withdrawal. This state is very different from addiction or psychological dependence which is a behavioral pattern of drug use characterized by continual craving for the opioid with compulsive drug-seeking behavior and an ovemhelming involvement in drug procurement and use. The chmnic use of opioidr in cancer pain patients has pnwided a natural experiment to study the aspects of physical and psychological dependence in a medical setting. Such studies have shown that it is possible for patients to be physically dependent without evidence of psychological dependence or addiction. Concurrent with this fear of addininn on the part of physicians and patients is a concern by both, more commonly physicians, that pain control is a lorm on euthanasia. This was mmt poignamly debated in the JAMA piece, “It’s Over Debbie,” and the furor of let& and anicles that followed.“” Treatment of pain is never a form of Its intent, iis goal. and the conditions in which physicians and patients interact are directed to the management of symptoms. In this article, a hospitalired dying cancer patient with pain is given an intravenous dose of morphine by a fatigued and overworked resident who hardly knows the patient. The patient. as described in the article, was receiving totally inadequate pain managemetn, and the dose ofdrug given would be unlikely to kill her. The patient died from a respi&ry arrest. What this article captured was the desrnir of a physician who decided that death for the patient was a better option than symptom control without any clear discussion of the patient’s options for treatment and without any attempt to provide better control of pain or management of
euthanasia.
psychologic dim.%% In far:, respiratory depre;sion is not a significant limiting factor in the management of patients with pain because with repeated doses, tolerance develops to this effect. allowing for adequate treatment of patients with estalating doses without respiratory cornpromisc.)’ The opioid drugs are commonly used to treat a variety of symptoms in patients with far-advanced disease who are actively dying. Morphine is used to treat the dyspnea associated with acute respiratory distress and to provide sedation in rhe patient with severe pain and anxiety prior to death. In the appmpriate use of opioid drugs in this patient population. the intent is always to treat the symptom of pain and/ or suffering. Its intent is never to kill the patient. However, confusion exists in the minds of patients as well as physicians about the role of these drugs in the care of the dying patient. An open discussion among patienu and families is critical to dispel cooceros and fears as well as to provide an open dialogue for the appropriate care of not only pat”. but tine more global aspects of psychological diexress or suffering. This fex and confusion about opioid drugs is only part of the greater issue of ambivalence that families, patients, and physicians have when a patient is dying. The ambivalence on the part of the patient, family, or the physician focuses on their desire to prolong life versus the need to alleviate suffering. It is difficult to define treatment plans for a patient in which the goals of therapy are to prolong life rather than to alleviate suffering. The risk&en&u of any approach are viewed very differently for the patient with acute postoperative pain than for the actively dying patient. LGstence
of Rrshicliau
in the
Health
care system At the current time, there are inadequate pro. visions for medical support of pain managemeni rymptoom control, and pychological distress for cancer patients. either in the hospital or at home. Control of pain is not considered a reason for admission to hospital and terminally ill patients cannot be admitted for this purpose alone. There are inadequate community resources and expertise to manage cancer patients with pain at home. Provisions to pay for high technological care for cancer patients are lack-
ing, yet studies show that prior to death. cancer pain patients will require at least two different routes of dros adm&istration to obtain adequate relief. The increasing use of subcutaneotts. intravenous, epidural, and intrathecal routes of drug administration has facilitated patients discharge fmm hospital to borne. The high cost of pumps, drugs. and home care sopervision on a 24.hr basis makes this cam only available to a limited oumber of patients who have appropriate health care coverage. By rationing pain management on a financial ‘basis, patients are being forced to consider death as their only option. Another barrier is the kgal restrictions placed on narcotic prescriptions. In New York Stare, physicians tow complete special triplicate prescription forms; federal laws require each physician to have a special license to prescribe oarcotics. In New York City, only about IO%ZO$ of tbe pharmacies will even cany khedule 11 drugs. such as morphine, hydromorphone. and methadone. that are commonly used to treat padents with pain and cancer. In New Jersey, patients can receive only 120 tablets per prescription, even though they may require ‘ZOOor 300 tablets a month for adequate pain control. Strict regulations prevent pharmacists from dispen&w these drws on an etner~encv basis and ihese &trictive fe&xes further support the patient‘s fear that these drugs are “dangerous” for them?’ Although the discussion of these issues has focused on the oocer vatient in the United States, similar and even~gtvater restrictions to the availability of opioids exist for cancer patients in developed and developing countries. Because Holland has been used as an example of one country that provides options for the termication of life for the patient with faradvanced disease, it is also useful to focus on Holland to learn what is the level of knowledge of physickans who are managing pain and other symptoms in cancer patients at home. What options do Dutch pgtientr. have and to what extent can they seek ottt pain expertise before requesting physician-assisted suicide? Dr. Charles Vecht. a neuroa~ologist and pain expert, has spoken out against physicianassisted suicide in Holland, demanding better education of health care professionals and patients in pain management and symptom conI
I
pmgram. The org&adoo-of health care in Holland limits. in oart. the abilitv of the oatient to seek out care from other than their family physician if their symptoms are not adequately treated. Padeno must be referred to other physicians by their rreadng physician. Although hospice care programs exist. they are available for only a limited number of patients. Themfore. before we consider the Dutch aperience as a model of physician-assisted suicide. detailed assessment of the physicians’ knowledge base in the care of terminally ill patients as well as patients’ options for sophisticated palliative care is critical to determine iI_they are, in faa. offering all possible trearment options to patients. The current Dutch experience suppordng physician-assisted suicide has been an impetus to the WHO Expert Panel on Cancer Pain and Palliative Care that met in July of 1990 to issue the following recommendation which states: “Governmenrs should insuw rhar they have dsvoted specific attention to ihe needs of their citizens for cancer pain relief and palliative care prior to considering legislation regarding eutbanasia.“‘P This rtiommendation supports the coostroct that before considering options for death. govemmenrs should look at their medical care system and their provisions for adegoare win relief and svmptom contml. As p& of’ its global can& care program. rhe WHO Cancer and Palliative Care Unit ha, rcquested that governments accept a cancer p*in relief policy a6 pan of their national legislation to insure that cancer patients receive adequate treaunent for their pain. It has also requested that health legislators develop programs to provide palliative care for padents with faradvanced disease.
,
Im@actof Pain on Qrda$
.
of Life
These barriers represent the external forces that have interfered with patients receiving adequate treatmenr. However, there are specific aspects of pain that, in part, also act as internal barriers or factors. Penisrent pain interferes with parienu’ quality of life and this. in turn. influences a patient’s choice about suicide or physician-assisted suicide. From a series of studies, there is evidence to suggea that pain
ap&rr;o
parientr and that pain relief improve quality of life.5,‘““‘*.w,“’ One common statement made by patients is that their pain is so wvere Ihal they are unable to begin to deal with the issue of monalirv. inrerlerine with their ability to develop coping mechaois& to deal with the dying process. In eying to *ease apart dlc aspecu oi pain that influence a padent’s quality of life. the pain’s actual. as well as perceived, chronicity is an imporuot factor. Pdliems cm endure periods of PCUIPpainful illness. However. when it persists. when it appears not to improve, and when the patiem begins to believe that there is no pain relief available, p&ems express sigoifiana degrees of helplessness and hopekssoess. Fishman and colleagues directly assessed patients’ intensity of pain. degree of pain relief. and mwd. and compared these resula LOa series of sophisticated psychological tests that evaluated anxiety, depression, and coping stvles.” Fishman learned that oatients can tolerate almost any intensity of piio if they perceive that oain relief is oorsible. The decree to which patients obtain bain relief much more closely influences their mood than does the pain’s intensity. This obrervadon is particularly important lxcause b focuses on the fan that patients’ mwd disorders are enormously influenced by the actual and perceived belief of pain relief. When patien:s are told that there is no way to treat their pain. when patients perceive that there is no hope for adequate treatment of their pain, psychological distress becomes markedly exacerbared and in uro. leads patients to consider various options. such as suicide or requests for physician-assisted suicide. Tbis psychological distress is alsoconfounded by the meaning of pain for each individual patient. For padents who are in acdve therapy (for example, patients undergoing bone marrow transplant), the promise of a cure often means tolerating signilicant amoums of pain. For those patients who are told that there is no primary therapy Tar their tumor. or that all therapies have failed to adequately treat their nonor, pain is equated with dying. In our experience. the majority of padents typically minimize their pain symptoms as they deal with all the other issues t&led to the treaunent of their disease.
When the treatment of their disease fails, they focus on the treatment of this symptom as a new priority. Clatifying the meaning of the pain far the patient can help to understand its impact on the !evel of psychological distress in the patient.
P.ychAgid Fackns and Suicia%R&h Thus,the meaning of pain, its chronicity,
and the lack of pain relief all contribute to the patient’s psychological morbidity. It is also important to recognize that psychological and mood disturbances sxem to be au essentia! cofactor in raising the risk of suicide in cancer pain patients. It is well recognized that the thoughts of suicide occur quite frequently in the setting of advanced cancer. Yet, there is cmmoversy about the degree of suicidal ideation in such pa. dents. Some authors. such as Silvetfarb, have suggested that suicidal ideation is limited to those who are significantly depressed, reporting rhat only 9 of I46 breast cancer patients had suicidal thoughts.8 From studies at Memorial Sloan-Kettering Cancer Center, suicidal risk evaluation ac. counted for 8.6% of psychiatric consttltatiot~s usually requested by staff in response to a pa. t&t verbalizing suicidal wishes.% In 185 cancer patients with pain, we reported that suicidal ideation occurred in 17% of the study population.’ The majmity of these patients reported suicidal ideation without intent to act. Of note. the suicidal ideation was not directly related to pain intensity, but was strongly related to the degree of depression and mood disturbance. In this group of patients, pxceptions of pain relief had more do with aspects of hopelessness they had to do with the patient’s perception of pain intensity. Table 1 from Dr.
than
to
%bfcl Cancer Suickk Vtdnembily
Factors
Breitbart’s studies identifies scone of the factors that make cancer patients vulnenble to suiEidal ideation?’ All of these factors should be considered in assessing the suicide potential cd an individual patient and in providing a framework for intetwmicm in orderto pm&L alternatives to suicide. These additional factors inclttdin~ pain. delirium, depression. and fatigue, cati more commonly with far-advanced discau. Depression is a factor in over 50% of all suicides and cancer patients are at 25 times greater risk for depression than is the general population. Data from the Psychiatry Service at Memorial Sloan-Kettering Cancer Center show that in suicidal cancer patients, one-third had a maim depression. and more thm half bad an adj&ment disorder, usually a.wciated with depressed ot anxious and depressed mood.‘5 Hopelerrne~s is the key variable linking depression to suicide and is a significantly better predictor of completed suicide than depression alone. In studies from Sweden. the incidence of suicide was signilicantly greater in cancer patients who were offered no further ueatment and no further mntact with a health care system.‘,‘” Another mtnm~n factor associated with suicide is the presence of delirium. Data fmm Memorial Sloan-Kettering Cancer Center have shown that approximately 20% of suicidal cancer patients had an organic brain syndrome at the time of their psychiatric evalttati~n.‘~ The presence of a mild delirium with a loss of impulse control can commonly set the stage for patients to act out suicidal thoughts, pxticukwly in a patient who is already depressed and wiously ill. Delirium may augment the patient’s sense of helplessness- and loss of control. Control relates to both the exhmne lass of control induced by symptoms or deficits due tocancer or its treatment, as well as to an excessive need on the part of atte padents to be in control of all aspects of living and dying. PhysicaI symptum~ and sians induced bv tbe cancer or c&& treatment~such as pat-a&esis. panpkgirt, loss of bowel and bladder control. amputation, inability to eat or swallow, all demonstrate to the patient their inability to control their bcdily functions. EDiscdes of confusion or hallttcination front th; opioid drugs are very distress. ing to ptients who perceive that they are losing control of their minds. These symptoms and
I
.
signs increase the risk of suicide, particularly in patients who are already psychologically dis rreacd?” The preexisting prychological history of the patient is critical in evaluating all these factors because personality disorders with wlf-deotrwtive behavior drastically tncwase the risk of stdtide. A history of alcohol abuse is second only to affective illness as an associated factor in as many as SO% of suicides. A family history or a prior suicide attempt both inlioence again the vtdnerahility factors for an individual patient with painandcancer. Lastly. fatigueon the part of the patient. as well a3 on the pari of the physician, and family, increws the risk&suicide in the cancer patiem5 With advances in cancer treatment, increased surviul is accompanied by increased complications, hospitalizations, and expctue. Symptom control has become a prolonged process with frequent advances and setbcb. The dyicq prwess can become extremely long and arduous for all concerned. Limited patient resources limited physician input, fataiiy financial concerns. frmtil~ fatigue. and psychiatric disturbances in the familv can all lead the patients to think that it wottlti be better for everyone. if dtey were dead. These aspects of exhaurtion and fatigue appear to be the crowning blow to the patient and family, who have previously coped relatively well hut become overwhelmed by poorly controlled pain and the depletion of financial resources. Breitbart has outlined the assessment of sttitide risk and the appropriate interventions (IIble 21. To date, there is a lack of sophistication by h<h care pmfessionalr in ttnbrstanding these vulnerability factors as well as in providing appropriate interventions. He has advised that the goal of intervention should be to provide effective management of cancer patients’ psychological distress, pain. and other symptoms as an alternative to suicide. However, this goal is not widely shared by all health care professionals. In fan, some view suicide or voluntary euthanasia as rational alternatives for those already dying and in distress. They view suicidal ideation or a request to hasten death in a cancer patient as a rational act that is unencumbered by psychiatric disturhance.J’~s8 Rational suicide is an oxymoronic statemettt. The data accumulated to date indicate that a
Establish rappon with an empathetic approxh Obtain patient’s utxdrtstmding ol illnsrr and prcwnt Iymp*oms Ass31 mental status (intmtal control) Asses vulnerability vatiablcr: pain cmtrol Aasrss rvppln system eaterna, mntml, Obtain history uf prior emotional problems or prycbiatric dirden Obtain tsmily birtory Re-zord prior ruiride threats. attempts Asscrr suicidal thinking. intent. plans
Evaluate need lor one-to.one nurse in haapital or companion at home; formulate t:eatmettt plan. immediate and long wrm
significant percentage of patients, more than the majority. have significant psychiatric morbidity influencing their requests for death. If the majority of physicians caring for patients with cancer and pain or psychiatric complications of cancer have not been educated in there vulnerability factors and approaches to treatment. then what optiotts might patients have if their only medical resottrcc~~ do not place a high priority in treating this disorder? The development of various types of condnuing care programs to manage patients with faradvanced disease and cancer has helped to provide a level of expertise to community phy sicians as well as to patients and Fttmilies in dealing with these issues. Hospital and home-based hospice programs, hospital-bwed plliative care programs and varying types of supportive care and continuing care pro~raros have been created but are insuBicient to meet the increasing number and medical care needs of this patient population. Of interest, Canada, Australii, England. and Denmark, as examples, have all integrated palliative care services into their medical care system. At Memorial Sloan-Kettering Cancer Center, we have developed a program of continuing care referred to as the Supportive Care Program in order to provide better management of pain and other symptoms in patients at home and to begin to study the problems that influence a propriate care for this population of patients. V9 From our studies now in over 310 patients. it has become apparent that pain and psychological distress are only two of the many symptoms
that must be addressed in the care of this pap ulatio” of patients. In fact, patients have upwards of 20 symptoms that interfere with the quality of their life on a day-by-day basis. These are listed in Table 5. Each of these needs ap propriate symptom control and there is a growing and emerging literature deal with better symptom management for this group of patients. In short, there is a growing expertise in the managettzent of patients with advanced diseases. Such expertise can provide patients with options for treatment and there is a need to balante these treatment options with requests for tennii&on of life. In developing strategies for the care of patients with far-advanced disease, certain principles need to be adopted by health care providers. specihcally physicians. Physicians most treat their patients with unconditional positive regard. They most see as their responsibility the ttcatment of a patient’s pair+ symptoms, and psychological distress that commonly coexists in advanced illness. Physicians must be trained in
to
nbk
Revdence
3
of symptoms “olunt_
ky Advanced
Cmeer Pllienu 4 Wk and I Wk Reforr Lkath IN = 99)
References 1. Levi” DN. Cleeland CS. Dar R. Public attitudes towards cancer pain. Cancer 1985:56:2337-2339.
N (?b)
S”motom Fatigue
Pain
Gmeralilcd weakness Sleepiness Mental kazine*sIomfurion Anxiety wkZk”esS of kg Skortwss of breath Natlxa Decrearad hearing DePESSio” Loss of appetite Inability to sleep W’c&“es” of upper limb Co”Sk Reatksrnesslinitability Swollen limb ConstiPatio” Difficulty wallowing Pulmonary congestion Dizziness lnw”li”c”cc Dirncuky speaking Svurcc: Ref. 5.
these approaches, and medical education needs to be adapted to meet these broader educational demands. Cancurrently. psychological distress and fatigue in physicians. patients. and family need to be addressed, and approaches. surh as respite care and team managettwt. should be introduced into the health care system. Physicians must set the goals of therapy with patients and families. For the dying patient, the goal of therapy should be to alleviate suffering. Ambivalence in goal setting by the patient or the family “takes the physician’s mle more dilFtcult. Physiciatx should have open discossions with patients and families about these goals, and the patient’s requests for treatment or no treatment. The need for symptom control until death should be assessed early on in the course of treatment. Any debate that focuses o” options for termination of life for patients with far-advanced disease should first focus on assessing the availability of continuing care for such pal tients. Adquate pain relief. control of swptams. and &atttie”t of psychologic di;tr&s clearly alter patients’ requests to renninate lie.
4
1
2. Helig S. The San Francisco Medical Saietyeuthanasia survey. Results and analysis. San Franciwo Medicine 1988:61:24-34. 3. Rolund C. Suicide and cancer: 1. Demographic and swial ckarartcrbtts of cancer patients who cornmitted suicide in Swede” I973-,976. J Psychosoc Onrol 19&x5:3: 17-39. 4. Bolund C. Suicide and omcer: IL Medical and cam farlors in suicides by cancer patients in Swede”. 1972-1976. J Psyckosw Oncol ,985:9:31-52. 5. Coyle N. Adelkardt J. Foley KM. Ponenoy RK. Character of temdnal illness in the advanced cancer patient: pain and other ~ymptomsduring the last four weeks of life. J Pain Symptam Manage 19+9:5:8343. 6. Louhivuori KA. Hakama M. Risk of suidde among ca”cer patients. Am J Epidemiot 1979.109: 3w3. 7. Saltzburg D, Breitban W. Firkma”. Lt. Stiefel F, Holland J. Foley KM. The relationship of pain and deprwion tu suicidal ideation in cancer patients. Amer Sac Cli” One 1989:8:1215. 8. Silberfarb PM, Maurer LH. Cmntkamcl CS. Psychosocial aspffb of neoplsrtir disease. I: functional status of breast cancer patients during differes
treaunem regimens. AmJ Psychiatry i980:137:45& 455. 9. Foley KM. The trcatmem J Med 1985:3,3:84-95.
of cancer
pain. N Eng,
10. Lks~, RL. &eland. CS. The prewlence and severily of pain in cancer. Cancer ,982:50: ,Y,J.
Il.
World Health Organitatiun. Geneva: WHO. ,986.
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