• E-mail
• Print
• Comment
• Font Size
• Digg
• del.icio.us
• Discuss article

Palliative Pain Management: When Both Pain and Suffering Hurt

Posted on: Friday, 15 July 2005, 03:00 CDT

Abstract / Patients with advanced cancer frequently experience intractable pain without sufficient response to a conventional pharmacological approach. One reason for refractory pain at the end of life can be the bidirectional nature of pain and suffering. Three terminally ill patients were assessed using a multidimensional palliative pain concept, including sensory, affective, cognitive, and existential components. In these patients, resistant pain did not equal insufficient eradication of the nociceptive input, but also suffering. Unrelieved emotions, depressive or anxious symptoms, delirium, difficulties communicating, or chemical coping influenced the expression of pain, illuminating the phenomenon of somatization. Palliative pain treatment integrated analgesic treatments, psychological, rehabilitative, and existential interventions, in consideration of individual expectations and outcomes. With the disciplined assessment and alternative multidisciplinary palliative approach, the quality of life of three terminally ill cancer patients with intractable pain could be enhanced, and unnecessary interventions and escalation of medications avoided.

Rsum / Les patients atteints d'un cancer avanc prouvent frquemment des douleurs irrductibles qui rpondent peine aux traitements pharmacologiques conventionnels. Une des raisons pour lesquelles cette douleur se produit en fin de vie est qu'elle est attribuable la nature bidirectionnelle de la douleur et de la souffrance. On a valu trois patients en phase terminale selon le concept multidimensionnel de la douleur en soins palliatifs incluant ses composantes sensorielle, affective, cognitive et existentielle. Chez ces patients, la douleur refractaire tait le signe que non seulement on n'avait pas russi liminer les causes de la douleur physique mais qu'on aurait d, galement, tenir compte de la douleur psychique. Les motions contenues dans les symptmes de dpression ou d'anxit, le dlire, les difficults de communication ou les ractions aux mdicaments ont influenc l'expression de la douleur illustrant bien le phnomne de la somatisation. Dans le cadre des soins palliatifs on intgre tout autant les traitements analgsiques que les interventions psychologiques, rehabilitatives et existentielles en considration des attentes et des rsultats de chacun. Ainsi nous avons adopt l'approche multidimensionnelle et multidisciplinaire des soins palliatifs et nous sommes parvenus amliorer la qualit de vie de trois patients souffrant de douleurs irrductibles, vitant de ce fait une escalade de mdicaments et nombre d'interventions inutiles.

INTRODUCTION

Pain is one of the most frequent and distressing symptom in patients with advanced cancer, and several measures have been introduced in an attempt to overcome barriers to adequate pain control (1). Educational initiatives and guidelines are provided to both health professionals (2) and patients (3). Standards of institutional pain assessment and management must be met in the United States, since fall 2001, in order to achieve and maintain hospital accreditation by the Joint Commission of Accreditation of Healthcare Organizations (4). Also, a change in national policies has increased the availability of opioids worldwide (5). Despite these and other efforts, many patients continue to suffer from intractable pain (6-9).

The expression of pain in patients with advanced cancer needs to be integrated into a broader context of overall patient distress (10), making use of a pain model allowing for factors contributing to pain other than peripheral nociception. Beecher (11) and others observed that strong emotions (soldiers) can block pain and described the "reaction component," making pain a complex and individualized phenomenon. Melzack and Wall (12) elaborated on the modulation of pain perception within the nervous system and produced the gate control theory (12). Later, the importance of psychological and cognitive factors, in addition to nociceptive input, resulting in the perception (not sensation) of pain was postulated by Melzack and Casey (13). Clinically, the importance of emotional factors associated with refractory pain syndromes has been demonstrated in studies exploring poor prognostic factors for pain control (14,15). Dame Cicely Saunders expanded the perception of pain to multidimensional suffering and named this concept "total pain" (16). A palliative approach to treating patients with intractable pain involves, therefore, consideration not only of the patient's biomedical, psychological, and psychiatric characteristics, but also of a number of social and family, as well as existential and spiritual influences (17). Neglecting these concepts may increase the likelihood of toxicity (18). However, this comprehensive concept of palliative pain relief could not been tested against standard pain care by clinical trials providing solid evidence. This lack was emphasized recently in the report from the American National Cancer Policy Board of the Institute of Medicine (Improving Palliative Care for Cancer), which states that practice guidelines for palliative and end-of-life care are in early stages of development (19).

The purpose of this contribution is to discuss three patients with refractory pain syndromes who were successfully treated using an expanded assessment and understanding of pain, acknowledging the reality at the end of life when the bidirectional nature of pain and suffering is evident. This paper aims to illustrate the effect of psychological distress on the suffering and, specifically, pain of patients with advancing incurable cancer.

CASE REPORTS

Case 1

A man in his 20s, with relapsed osteosarcoma progressing rapidly in his bones and lungs, was on hemodialysis for ifosfamide-induced end-stage renal failure, and had received a single-dose palliative radiation therapy treatment, but no systemic antineoplastic therapy. He had four pain syndromes: neuropathic pain in both legs, somatic pain in both forearms, musculoskeletal pain in the shoulder, and a sensation of chest stiffness associated with the sufentanil dose. Sertraline was continued for a pre-existing depressive adjustment disorder. He had used ecstasy (3,4-methylenedioxymethamphetamine) and marijuana recreationally. The attitude of his large caring, but paternalistic immigrant family toward him as the only son precluded disclosure of his prognosis to the patient.

The pain remained intractable (VAS 7-10 out of 10, 10 being the worst pain imaginable), despite a combination of nonsteroidal anti- inflammatory drugs (NSAIDs), gabapentin three times per day, and progressively more potent opioids. These culminated in the administration of intravenous methadone around the clock, and sufentanil per patient-controlled analgesia (PCA). The morphine- equivalent daily dose (MEDD) was 4,500 mg. He experienced repeated opioid-induced neurotoxicity such as hallucinations, confusion, and fluctuating levels of consciousness (i.e., delirium). Naloxone was given for myoclonus, resulting in a tonic-clonk seizure that required phenytoin. Diphenhydramine and lorazepam were given for nausea, confusion, and insomnia, and fluconazole for Candida stomatitis.

A pain management approach that included a continuous "palliative" multidimensional assessment, simplifying adjuvant drugs (20), replacing two NSAIDs with short-term corticosteroids (for inflammatory and neuropathic pain, nausea, and anorexia), switching from diphenhydramine and lorazepam to haloperidol (to treat delirium while avoiding sedating drugs), and rotating opioids (to reduce nonanalgetic but sedating opioid metabolites) (21) allowed for counselling of the patient and his family. Efforts were made to achieve a compassionate, protected environment in the hospital room for the counselling sessions (expressive supportive therapy) (22). The patient was able to reveal emotions such as anger, frustration from unmet dreams and plans, and grief about losing his girlfriend soon. The pain level expressed by the patient remained high for several days, even though the number and dose of analgesics could be reduced (Figure 1). Then, after one week, the pain levels dropped.

The patient was seen one to two times daily for 45-60 minutes by the palliative care physician (fellow) or advanced practice nurse (APN). The palliative care attending physician (assistant or associate professor) supervised the fellow or APN at least daily, including a personal patient visit and often a counselling session. In addition, the psychiatric APN counselled the patient once almost every day for another 30 minutes and, two to three times a week, the family members were seen for another 30 minutes. The fellow, APN, attending physician, and psychiatric APN closely shared their process with the patient and family, and performed joint visits two to three times a week. Other members of the hospital palliative care mobile team (HPCMT) included the chaplain, social worker, pharmacist, physiotherapist, and nutritionist, who saw the patients once or twice a week, upon request of the fellow, APN, or attending physician. Since the psychiatric APN emphasized spiritual issues as part of her work, the role of the chaplain in caring for this patient and family was limited.

Figure 1 / MORPHINE EQUIVALENT DAILY DOSE (MEDD) CUR\VE OF CASE 1 (ADMISSION UNTIL DISCHARGE TO HOME HOSPICE)

For each visit, a quiet and respectful setting, including sitting on the same level as the patient, was ensured. Permission for each visit was requested and the communication was oriented to the patient's actual information needs and knowledge of aspects of his illness caused mainly by his cancer disease (23).

The four persons most involved actively applied the following approaches for alleviating pain and suffering. Using communication techniques (24), they acknowledged emotions and allowed further expression of them. In echoing and mirroring, the interviewer repeats contents or meaning, respectively, of the last phrases used by the patient; in normalization, she or he explains that the patient's perceptions and emotions are normal, often helping relieve the patient's distress. Assisting the patient to attach emotions to events in real life may alleviate the emotion. For example, anxiety or anger without understanding where it comes from is often more difficult to cope with than when the patient can express why he or she is anxious or angry. The potentially painful but healing process of expressing emotions was explained and normalized. To improve understanding of this process, a metaphor of a painful incision and healing excavation of an abscess was used.

The patient was supported and guided in asking questions about potential complications of his progressing cancer and about death. He was guided to reflect on both preparing for the worst and hoping for good things to happen (hoping for the best). The metaphor of two parallel directions was used. One direction is the one of getting prepared for death, including finishing unfinished business, saying goodbye, and expressing forgiveness and love (25). His grief over abandoning his girlfriend was actively acknowledged. The other direction encompassed living his remaining time nurtured by hope and as fully as possible within his illness-related limits. A prognosis in a pseudo-exact timeframe was avoided; a timeframe was given using period estimations such as hours-to-days, days-to-weeks.

The patient's mother and girlfriend were included in the daily visits at the patient's request or with his permission. These interactions were based on a compassionate attitude toward the patient and his family, and were accompanied by reassurance of nonabandonment and continuous support, which could indeed be provided by the 24/7 service. The patient bonded mainly to the palliative care fellow and the psychiatric APN. Progress made with the patient and family was informally shared between them after most visits. The HPCMT met daily to discuss the patient, and shared personal experiences at bi-weekly supervisory meetings. In order to qualify for the multidisciplinary team, clinically experienced palliative care physicians received bedside teaching and lectures provided by the psychiatric team.

The family supported this approach after a family conference during which they received clarification of the difference between disclosing a prognosis and compassionate counselling. The approach resulted, after a week, in successful analgesic monotherapy with methadone 10 mg/q12h (a 20-fold MEDD reduction) (Figure 1) and discharge of the patient to his home.

Case 2

A woman in her 40s with relapsed breast cancer that had been widely metastatic to the bones for six years was treated with several courses of radiation therapy, hormones, capecitabine, and, most recently, 24 cycles of vinorelbine. Her bone disease continued to progress, primarily in the thoracic spine, and was accompanied by the onset of new pain. She had stable major depression treated with nortriptyline, and an anxiety disorder treated for a long time with alprazolam. She used carisoprodol frequently and delta-9-THC (marinol) rarely to relax, and zolpidem for insomnia. At the age of seven years, she had had a stroke with residual ataxia. She lived in a trailer with her disabled husband. Two teenage sons refused to accompany her to the cancer centre, mostly because of memories of their grandmother, who had died four years earlier of metastatic breast cancer.

Figure 2 / MORPHINE EQUIVALENT DAILY DOSE (MEDD) CURVE OF CASE 2 (1 MONTH BEFORE UNTIL 1 MONTH AFTER ADMISSION)

Figure 3 / SYMPTOMS* OF CASE 2 (FROM ADMISSION UNTIL DAY 12; DAY 10 SURGERY)

The patient was admitted to the emergency room with intractable pain and insomnia, despite taking 2,800 mg oral hydromorphone and 300 mg transdermal fentanyl per day (MEDD, 14,000 mg) after many weeks of increasing doses (Figure 2). She had purchased a gun locker in which to store the analgesics. Her cognition was impaired (Mini- Mental Status Questionnaire (MMSQ) score 21/28), mild myoclonus was visible, and she experienced tactile hallucinations (Figure 3). A new pain-management approach included rotating opioids, hydrating her to treat the opioid-induced neurotoxicity, stopping carisoprodol, reducing alprazolam, and increasing nortriptyline. These medication changes were carefully discussed with the patient.

Counselling allowed her to express her profound fear of dying as her mother had died, the guilt associated with her inability to look after her sons and with becoming a burden herself, her frustration at not being able to realize the dream of going fishing with her husband, and a general uncertainty about the future. She was coached to write letters to her deceased mother; this expressive writing therapy (26) she perceived to be difficult but helpful. She learned to distinguish between the hurtful sensations of suffering and localized bone pain. The bone pain was a sharp pain in the mid- thoracic spine, with radiation to the bilateral chest area. This pain increased with movement and was responsive to the opioid treatment. The other painful sensation was a pain in the heart and upper abdominal area, which she experienced at increased intensity while thinking of her mother and sons, and while writing. A daily repeated history of which pain she experienced most and at which locations finally resulted in the patient's being often able to distinguish between the two. With her consent and understanding, these two pains were treated differently. Low-dose haloperidol was prescribed for her suffering and opioids were given for the pain. The same HBPCT as described in case 1 approached the patient in a comparable way.

Within a few days, her opioid requirements dropped dramatically (intravenous methadone 10 mg/q12h and intravenous hydromorphone as needed, MEDD 400 mg), and her physical, cognitive, and emotional function improved. She was able to get out of the bed and into a wheelchair and, after 10 days, she walked around the ward with assistance. She began to recall the names of the treating team members and her MMSQ normalized (Figure 3). She began to feel guilty about not being with her children while waiting for surgery, and angry about being on the waiting list, as well as anxious about losing control over the medications for pain and relaxation. After a couple of days she was less angry with the team and her anxiety attacks were fewer, even though her anxiety levels remained high (Figure 3). Her pain levels still fluctuated between VAS values of 4/ 10 and 9/10, but with a decreasing average (Figure 3). After one week, the patient underwent posterior spinal fusion.

Case 3

A Hispanic man in his 50s with relapsed neurogenic sarcoma involving the right pelvis, sacral epidural disease, and pleural metastasis had progressive disease during third-line chemotherapy with gemcitabine. Mixed somatic/neuropathic pain syndrome of the right lower extremity and pleuritic chest pain were treated with different opioids and adjuvant drugs. Constipation was symptomatic, with nausea and vomiting. Intractable pain and opioid-induced neurotoxicity (severe sedation, hallucinations, and myoclonus), constipation, and nausea required repeated hospital admissions. Despite fentanyl 150 mg/h and morphine PCA (MEDD 500 mg/d), pain remained at VAS 7/10, and neuraxial treatment was discussed in an interdisciplinary consultation, but was not yet applied.

Changes in pain management included simplification of adjuvant and sedating drugs, hydration, short-term corticosteroids for neuropathic pain, and opioid rotation. After a few days, methadone 5 mg/q8h around the clock and 2 mg as needed was given. Methadone elixir was effective after one minute, suggesting that the patient experienced a response too quickly to be explained by pharmacological effects. Telephone and personal conversations relieved pain by more than 50%. Counselling, including of the patient's family, and expressive supportive therapy revealed a theretofore uncommunicated frustration and anger about former diagnostic delays, as well as a profound fear of progressive cancer and dying. He had no feelings of guilt, worthlessness, or suicidal ideation, but moderate anhedonia. He and his daughter learned to understand the nature of three different pain syndromes. The first two pain syndromes were neuropathic pain of the right lower extremity, and the principally somatic pain of his chest wall. The third pain syndrome was a pain in the chest area when his emotions, existential suffering, and fears were overwhelming. The same team as in case 1 followed the patient.

The patient went home conscious, taking methadone 15 mg/d (threefold MEDD reduction), and reporting an average pain of VAS 3/ 10.

DISCUSSION

These three cases illustrate that palliative pain management for patients with refractory pain in the context of advancing incurable cancer embraces a spectrum from biomedical knowledge to psychospiritual dynamics-the integration of "high tech" and "high touch". A key element in all three cases was the diagnosis and reversal of cognitive impairment (27), as well as allowing the patients to use words other than "pain" to express their concerns and emotions (28). The mul\tidimensional intervention described alleviates psychological distress and suffering (21).

In all cases it was crucial to do the "biomedical homework" by assessing and diagnosing each pain syndrome and its treatment (29- 31)-location; radiation pattern; quality; aggravating and relieving factors; presence of incident and neuropathic pain (32); pain history and temporal aspects; evidence for chronic pain (31,33,34); characteristic of the underlying disease; hypothesis of the pain mechanism; pharmacological interventions, and their interactions and side-effects (35); estimation of opioid tolerance (36); and the effect of pain on different aspects of the patient's quality of life (37). The importance of pharmacological issues is highlighted in Case 1: interactions of sufentanil and methadone with phenytoin and fluconazole; an overdose of gabapentin in renal failure; the additional pain syndrome of chest tightness, a dose-limiting side effect of high-dose sufentanil.

These three patients show that the diagnosis and treatment of risk factors for refractory pain (29) such as emotional distress, somatization (expressing emotions through physical symptoms), probably alexithymia (lack of ability to express feelings verbally), impaired cognition, and chemical coping, can be essential for pain management in this patient group.

Pain expression is often increased in patients with advanced cancer. One reason is that unidimensional rating scales for pain measure almost exclusively the affective dimension rather than the sensory dimension (38). Pain ratings will parallel the trajectory of general emotional distress. Reasons for emotional distress include:

* several short-lived emotions such as anger, demoralization, anxiety, and fear;

* psychosocial stressors such as expectancy (expectation of events which are unlikely to happen), cognitive appraisal (attempting to cope cognitively with emotions), self-efficacy (awareness that personal achievements are less possible than earlier in life), perceived control (lack of control about events, therapies, etc.), losses;

* psychiatric illnesses such as depression and anxiety; and

* existential distress (12).

For practical pain assessment, the active recognition of psychological factors influencing the experience of pain-anger, fear, abandonment, personal loss, negative memories, depression, long-standing unresolved interpersonal conflicts-may become a sentinel element for pain control. The phenomenon of psychosocial- spiritual pain amplification (39) may become a powerful trigger for a vicious cycle of increased pain expression, anxiety, escalation of opioid and benzodiazepine use, and impaired cognition.

The misattribution and/or psychological amplification of the severity of physical symptoms are features of somatization and sornatoform pain disorders. The current DSM-PV criteria for a (sornatoform) pain disorder state that the patient's pain appears to be in excess of physiologic findings; psychological factors appear to be important in the onset, severity, exacerbation, or maintenance of the pain; and the pain causes clinically significant distress or impairment of social, occupational, or other important areas of functioning. These mental illnesses are rare in the overall population and no study has found a higher frequency of patients meeting the DSM-IV classification close to end of life. However, for pain management in very sick patients with advancing cancer, it can be essential to appreciate that patients use a physical language to express suffering in all its facets (40).

Impaired cognition triggers increased symptom expression and is often caused by opioid-induced neurotoxicity (41), other medications, dehydration, malignant brain involvement, and paraneoplastic metabolic alterations (42).

An important risk factor for this vicious cycle of pain amplification is the use/abuse of alcohol or other substances to cope with life stressors, which can entail maladaptive coping (chemical coping) with psychotropic medications including opioids (43).

After improvement of cognition, psychological counselling became possible and was an important feature in management of the cases described. The counselling was an integral part of the daily rounds of 30 to 75 minutes of the palliative care hospital mobile team visiting the patients in the usual inpatient wards. Counselling was performed by either the palliative care physician or the palliative care APN under the supervision of an attending physician. In addition, almost daily, the psychiatric APN performed independent counselling sessions of 30 to 60 minutes. Most cases were discussed to draw on the synergy of the interdisciplinary team. In the cases presented, the integration of the psychiatric nursing service and the medical palliative care service was important. Case-related personal experiences were shared in the weekly team supervisory meetings, lead by a psychiatric physician and APN.

The goal of the counselling was to allow the patients to express emotional distress in order to reduce symptom expression, and to understand better their different pain and suffering experiences. Each counselling session followed the principles for breaking bad news (20). In order always to be seated, team members brought folding golf chairs. The team members were trained to identify emotions; to normalize the experience of the patient compassionately, attaching the emotion to an individual causative factor; and to assist the patient in better understanding the experience.

In two patients (Cases 1 and 3), the counselling also emphasized how to bring life to a close. Unresolved issues were respectfully discussed and patients encouraged to "finish business." The parallel ways of "preparing for the worst" and "hoping for the best" were emphasized (44). The integration of emotional issues with concerns over bringing life to a close probably allowed the patients to cope with problems that otherwise would have festered, unresolved, in the background.

These patients with advanced terminal illness and intractable pain illustrate the challenging coexistence of two well-known human realities-pain can cause suffering and suffering can cause pain-or the bidirectional nature of pain and suffering. In case 2, for example, progressive incident pain increased the patient's helplessness and frustration. She equated impending spinal cord compression with loss of physical integrity and autonomy, and became exhausted coping with the continuously perceived pain, which resulted in suffering from pain. On the other hand, four years after the death of her mother, she was still terrified of dying from breast cancer as her mother had. Guided letter writing to her deceased mother enabled her to begin taking care of unfinished business. She began to work on her concept of spiritual and familial immortality, actively reviewing what of importance she would leave behind on earth, and how she would like to be remembered. Even though she had several risk factors for symptom amplification, she was able to learn to distinguish between the sensations of tissue or bone pain and pain from suffering.

Suffering is difficult to define conceptually. It comprises perceived helplessness; the inability to cope with stressful events; and the bankruptcy of physical, psychological, and social resources. Suffering has been described as a threat or damage to the integrity of the self, and entails a disparity between what one expects of one's self and what one does or is (45). Religious values and culture influence the experience and meaning of suffering: social harmony (shamanism), karma (Hinduism), illusion of soul (Buddhism), Job's mystery (Judaism), crucifixion and God's mercy (Christianity), predestination and divine compassion (Islam), and the secular culture of Western science and medicine (46).

Pain is rarely the sole cause of suffering in patients with cancer, but severe pain alone is sufficient to cause and sustain suffering (47). The experience of pain contains both discriminative- sensory (location of the pain and how it feels) and affective (meaning of pain: motivational-affective/cognitive-evaluative) dimensions, which can be selectively influenced by psychological factors (48). Pain unpleasantness, the "primary" affective pain dimension, pertains to a short-term emotion such as distress or fear that is often linked to the intensity of the painful sensation. However, increased pain unpleasantness may be incompletely related to more intense sensation of pain. "Secondary" pain affect is determined by the perceived interference of pain with one's life (patient's mood and cognition, will to live, family relations, social life and skills, roles, sleep, appetite, spirituality, and autonomy or ability to participate in physical activity for self- care or enjoyment), the difficulty of enduring pain over time, and the implications for the future, which can be perceived as suffering (49). Uncontrolled pain can even mimic psychiatric disorders (50). Countless studies confirm the association between unrelieved pain and anxiety, depressive symptoms, and general distress (51,52). Several of the symptoms observed are similar to those in maladaptive and self-sustaining stress responses (53), and may lead to a vicious cycle of stress and disability (29), finally causing suffering.

Patients with a terminal illness sometimes report feeling pain in locations where underlying tissue damage is unlikely, suggesting that suffering can cause pain. This pain has at times been described by patients as "heartbreak pain", "fear of death", "pain where the tears emerge", "being angry", "why-me pain", "all of me is wrong", or "feeling-no-hope hurt". Dame Cicely Saunders, in the early 1960s, described the "it is all pain" as total pain, including physical symptoms, mental distress, and social and emotional problems (13). Existential or spiritual suffering can often be identified em\pirically as contributing to increased pain expression (54). Existential domains have been shown to predict variations in the quality of life of palliative care patients, using a single item scale: "Considering all parts of my life-physical, emotional, social, spiritual, and financial-my quality of life in the past two days was...very bad/excellent" (55), or within a broader construct of palliative care outcome (56). Existential suffering has not been well defined and is often taken to mean spirituality, which has been defined as "concerned with the transcendental, inspirational, and existential way to live one's life as well as, in a fundamental and profound way, with the person as human being" (57). Screening tools have been proposed for spirituality (58). The McGill Quality of Life Questionnaire includes a subscale that measures the existential domain (48). Similarly, the FACT-G includes measures of symptom distress, and a spiritual module has been developed to add on to the FACT-G (59). However, the isolated influence of existential and spiritual distress on symptom expression has rarely been described. Therefore, the screening process for existential and spiritual distress relies on the experience (dealing with unfinished business, forgiveness, symbolic immortality) of the healthcare worker. In order to respectfully tackle these issues, healthcare workers should be aware of their own limitations, have strategies to understand and handle their own emotions, and be assured they enter such encounters with a good level of comfort (60). An open, respectful communication style (avoiding statements of negotiation, incautious language, personal imagery, inappropriate reassurance, and careless positive thinking) (61), recognition of the uniqueness and autonomy of each patient, and tolerance of patients' beliefs can facilitate a rational patient assessment. By integrating established concepts of biomedicine, psychology, and spiritual care, suffering is not "medicalized", since the described approach can protect patients from misinterpretations and futile treatments, and help them achieve a better quality of life until death.

The treatment decisions for each of the several pain syndromes in the three patients described were based on a continuous multidimensional assessment, an integrative interdisciplinary treatment approach (62), and a respect for patient preferences (63). Specific treatments for localized or incident pain syndromes (Cases 1 and 2, radiation treatment) should be considered, and invasive analgesic procedures of modulation (spinal cord stimulation (64)) or ablation of the nociceptive input (neurosurgical ablation, chemical neurolysis (65)) (Case 3). In most patients with advanced, incurable illness, systemic pharmacological therapy remains a cornerstone of pain treatment (66-69). Systematic monitoring of opioid-related toxicities (33), dose adaptation (70), the use of opioid rotation (71), hydration (72), alternative routes of administration (73), and a careful patient education (74) can often relieve opioid-resistant pain syndromes (Cases 1-3). The number of available adjuvant drugs for pain control is expanding (75), but they require careful evaluation in terminally ill patients (76). Strategies to improve pain by modifying aggravating and relieving factors in daily life can be taught to patients and their families, involving rehabilitative medicine, psychotherapeutic interventions (77,78), and behavioural methods (79-81).

The integrative concept of palliative pain management has not been tested in controlled clinical trials. A prerequisite, however, would be a comprehensive cancer pain classification system in which any type of contributor to pain is incorporated. For many of the elements of palliative pain management, empirical evidence has accumulated. However, controlled clinical trials are required to test specific hypothesis of this type of pain management, entailing considerable ethical challenges in these patients close to end of life. With the use of alternative palliative approaches, including a disciplined multidimensional assessment (Table 1) and management (Table 2) by a skilled multidisciplinary team, the quality of life of patients with intractable pain may be enhanced, their lives may be prolonged, and unnecessary interventions, procedures, and escalation of medications may be avoided. Although not everybody has access to palliative care as part of the daily routine, it may be possible to implement elements of a palliative pain-management approach at many care facilities.

Table 1 / PALLIATIVE PAIN ASSESSMENT

CONCLUSION

For patients in palliative care with refractory pain, a multidimensional assessment taking into account risk factors of symptom expression, and the bidirectional nature of suffering and pain can alleviate distress. The synergistic work of an interdisciplinary team, such as the integration of the psychiatric nursing service and the medical palliative care service, may contribute substantially to the benefits achieved. Daily psychological counselling has the potential to enable the patient to express emotions in words rather than exclusively in physical language, and to integrate emotional issues with the concerns of bringing life to a close.

Date received, September 17, 2003; date accepted, January 9, 2004.

ACKNOWLEDGEMENT

Florian Strasser is supported by a grant from Swiss Cancer Research (BIL Grant KFS 950-09-1999).

Table 2 / PALLIATIVE PAIN TREATMENT

REFERENCES

1. Pargeon KL, Hailey BJ. Barriers to effective cancer pain management: a review of the literature. J Pain Symptom Manage 1999; 18: 358-368.

2. World Health Organization. Cancer pain relief: with a guide to opioid availability. 2nd edition. Geneva: WHO, 1996.

3. Cancer Pain Treatment Guidelines for Patients. National Comprehensive Cancer Network (http://www.nccn.org/patient gls/ english/ pain/index.htm) March 2000; version 1 (accessed July 14th 2002).

4. World Health Organization. New Pain Standards: a giant opportunity to change patterns of care in the US. Cancer Pain Release 2001; 14: 1-8.

5. Liliana De Lima MH, Sakowski JA, Stratton Hill C, Bruera E. Legislation analysis according to WHO and INCB criteria on opioid availability: a comparative study of 5 countries and the state of Texas. Health Policy 2001; 56: 99-110.

6. Okuyama T, Wang XS, Akechi T, Mendoza TR, Hosaka T, Cleeland CS, Uchitomi Y. Adequacy of cancer pain management in a Japanese cancer hospital. Jpn J Clin Oncol 2004; 34(1): 37-42.

7. MacDonald N, Ayoub J, Parley J, Foucault C, Lesage P, Mayo N. A Quebec survey of issues in cancer pain management. J Pain Symptom Manage 2002; 23(1): 39-47.

8. Desbiens NA, Wu AW. Pain and suffering in seriously ill hospitalized patients. J Am Geriatr Soc 2000; 48(5 suppl): S183- S186.

9. Weiss SC, Emanuel LL, Fairclough DL, Emanuel EJ. Understanding the experience of pain in terminally ill patients. Lancet 2001; 357: 1311-1315.

10. Robinson K, Bruera E. The management of pain in patients with advanced cancer: the importance of multidimensional assessments. J Pallit Care 1995; 11: 51-53.

11. Beecher HK. Measurement of Subjective Responses: quantitative effects of drugs. New York: Oxford University Press, 1959.

12. Melzack R, Wall P. Pain mechanisms: a new theory. Science 1965; 150: 171-179.

13. Melzack R, casey KL. Sensory, motivational, and central control determinants of pain: a new conceptual model. In: Kenshalo D (ed). The Skin Senses. Springfield, Illinois: Charles C. Thomas, 1968; pp. 423-429.

14. Hwang SS, Chang VT, Fairclough DL, Kasimis B. Development of a cancer pain prognostic scale. J Pain Symptom Manage 2002; 24(4): 366-378.

15. Zaza C, Baine N. Cancer pain and psychosocial factors. A critical review of the literature. J Pain Symptom Manage 2002; 24(5): 526-542.

16. Clark D. 'Total pain', disciplinary power and the body in the work of Cicely Saunders, 1958-1967. Soc Sci Med 1999; 49: 727-736.

17. Bruera E, Watanabe S. New developments in the assessment of pain in cancer patients. Support Care Cancer 1994; 2: 312-318.

18. Boisvert M, Cohen SR. Opioid use in advanced malignant disease: why do different centers use vastly different doses? A plea for standardized reporting. J Pain Symptom Manage 1995; 10(8): 632- 638.

19. Marwick C. IOM calls for improvements in palliative care. J Natl Cancer Inst 2001; 93: 1128.

20. Bruera E, Fainsinger RL, Schoeller T, Ripamonti C. Rapid discontinuation of hypnotics in terminal cancer patients: a prospective study. Ann Oncol 1996; 7(8): 855-856.

21. Indelicato RA, Portenoy RK. Opioid rotation in the management of refractory cancer pain. J Clin Oncol 2003; 21(9 suppl): 87-91.

22. Stanton AL, Danoff-Burg S, Cameron CL, Bishop M, Collins CA, Kirk SB, et al. Emotionally expressive coping predicts psychological and physical adjustment to breast cancer. J Consult Clin Psychol 2000; 68: 875-882.

23. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP: SPIKES-a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000; 5: 302-311.

24. Fallowfield L, Jenkins V. Effective communication skills are the key to good cancer care. Eur J Cancer 1999; 35: 1592-1597.

25. Penson RT, Yusuf RZ, Chabner BA, Lafrancesca JP, McElhinny M, Axelrad AS, Lynch TJ Jr. Losing God. Oncologist 2001 ; 6: 286-297.

26. Smyth JM, Stone AA, Hurewitz A, Kaell A. Effects of writing about stressful experiences on symptom reduction in patients with asthma or rheumatoid arthritis: a randomized trial. JAMA 1999; 281: 1304-1309.

27. Hennequin M, Morin C, Feine JS. Pain expression and stimulus localisation in individuals with Down's syndrome. Lancet 2000; 356: 1882-1887.

28. Maguire P, Faulkner A, Booth K, Elliott C, Millier V. Helping cancer patients disclose their concerns. Eur J Cancer 1996; 32A: 78- 81.

29. Caraceni A, Portenoy RK. An international survey of cancer pain characteristics and syndromes. IASP Task Force on \Cancer Pain. International Association for the Study of Pain. Pain 1999; 82: 263- 274.

30. Rhodes DJ, Koshy RC, Waterfield WC, Wu AW, Grossman SA. Feasibility of quantitative pain assessment in outpatient oncology practice. J CNn Oncol 2001; 19: 501-508.

31. Millan MJ. The induction of pain: an integrative review. Prog Neurobiol 1999; 57: 1-164.

32. Bruera E, Schoeller T, Wenk R, MacEachern T, Marcelino S, Hanson J, Suarez-Almazor M. A prospective multicenter assessment of the Edmonton Staging System for cancer pain. J Pain Symptom Manage 1995; 10: 348-355.

33. Woolf CJ, Salter MW. Neuronal plasticity: increasing the gain in pain. Science 2000; 288: 1765-1769.

34. Schnitzler A, Ploner M. Neurophysiology and functional neuroanatomy of pain perception. J Clin Neurophysiol 2000; 17: 592- 603.

35. Cerny N, Ripamonti C, Pereira J, Davis C, Fallen M, McQuay H, et al. Strategies to manage the adverse effects of oral morphine: an evidence-based report. J Clin Oncol 2001; 19: 2542-2554.

36. Daeninck PJ, Bruera E. Opioid use in cancer pain. Is a more liberal approach enhancing toxicity? Acta Anaesthesiol Scand 1999; 43: 924-938.

37. Radbruch L, Loick G, Kiencke P, Lindena G, Sabatowski R, Grand S, et al. Validation of the German version of the Brief Pain Inventory. J Pain Symptom Manage 1999; 18: 180-187.

38. Clark WC, Yang JC, Tsui SL, Ng KF, Bennett Clark S. Unidimensional pain rating scales: a multidimensional affect and pain survey (MAPS) analysis of what they really measure. Pain 2002; 98(3): 241-247.

39. Syrjala KL, Chapko ME. Evidence for a biopsychosocial model of cancer treatment-related pain. Pain 1995; 61: 69-79.

40. Lawlor P, Walker P, Bruera E, Mitchell S. Severe opioid toxicity and somatization of psychosocial distress in a cancer patient with a background of chemical dependence. J Pain Symptom Manage 1997; 13: 356-361

41. Ripamonti C, Bruera E. CNS adverse effects of opioids in cancer patients. Guidelines for treatment. CNS Drugs 1997; 8: 21- 37.

42. Lawlor PG, Gagnon B, Mancini IL, Pereira JL, Hanson J, Suarez- Almazor ME, Bruera ED. Occurrence, causes, and outcome of delirium in patients with advanced cancer: a prospective study. Arch Intern Med 2000; 160: 786-794.

43. Lawlor P, Walker P, Bruera E, Mitchell S. Severe opioid toxicity and somatization of psychosocial distress in a cancer patient with a background of chemical dependence. J Pain Symptom Manage 1997; 13: 356-361.

44. Back AL, Arnold RM, Quill TE. Hope for the best, and prepare for the worst. Ann Intern Med 2003; 138(5): 439-443.

45. Cassell EJ. Diagnosing suffering: a perspective. Ann Intern Med 1999; 131: 531-534.

46. Heitman E. The influences of values and culture in responses to suffering. In: Stark PL, McGovern JP (eds). The Hidden Dimension of Illness: human suffering. 1st edition. New York: National League for Nursing, 1992; pp. 81-103.

47. Strang P. Cancer pain: a provoker of emotional, social, and existential distress. Acta Oncol 1998; 37: 641-644.

48. Rainville P, Carrier B, Hofbauer RK, Bushnell MC, Duncan GH. Dissociation of sensory and affective dimensions of pain using hypnotic modulation. Pain 1999; 82: 159-171.

49. Price DD. Psychological and neural mechanisms of the affective dimension of pain. Science 2000; 288: 1769-1772.

50. Breitbart W, Payne D. Psychiatric aspects of pain management in patients with advanced cancer and AIDS. In: Chochinov HM, Breitbart W (eds). Handbook of Psychiatry in Palliative Medicine. 1st edition. New York: Oxford University Press, 2000; pp. 131-159.

51. Kelsen DP, Portenoy RK, Thaler HT, Niedzwiecki D, Passik SD, Tao Y, et al. Pain and depression in patients with newly diagnosed pancreas cancer. J Clin Oncol 1995; 13: 748-755.

52. Glover J, Dibble SL, Dodd MJ, Miaskowski C. Mood states of oncology outpatients: does pain make a difference? J Pain Symptom Manage 1995; 10: 120-128.

53. Stratakis CA, Chrousos GP. Neuroendocrinology and pathophysiology of the stress system. Ann N Y Acad Sci 1995; 771: 1- 18.

54. Chapman CR, Gavrin J. Suffering: the contributions of persistent pain. Lancet 1999; 353: 2233-2237.

55. Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med 1997; 11: 3- 20.

56. Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care 1999; 8: 219-227.

57. Spiritual Care Work Group of the International Work Group on Death, Dying, and Bereavement. Assumptions and principles of spiritual care. Death Stud 1990; 14: 75-81.

58. Puchalski C. Taking a spiritual history allows clinicians to understand patients more fully: an interview with Dr. Christina Puchalski, by Al Romer, Innovations in End-of-Life Care, 1999; 1(6). (http://www2.edc.org/lastacts/archives/archivesNov99/default.asp) (accessed January 6, 2005).

59. Peterman AH, Fitchett G, Brady MJ, Hernandez L, Cella D. Measuring spiritual well-being in people with cancer: The Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp). Ann Behav Med 2002; 24(1): 49-58.

60. Block SD. Perspectives on care at the close of life. Psychological considerations, growth, and transcendence at the end of life: the art of the possible. JAMA 2001; 285: 2898-2905.

61. Kiss A. Quality of life and psychosocial support. Support Care Cancer 1995; 3: 1-2.

62. Ahmedzai SH. Window of opportunity for pain control in the terminally ill. Lancet 2001; 357: 1304-1305.

63. Bruera E, Sweeney C, Calder K, Palmer L, Benisch-Tolley S. Patient preferences versus physician perceptions of treatment decisions in cancer care. J Clin Oncol 2001; 19: 2883-2885.

64. Kemler MA, Barendse GA, van Kleef M, de Vet HC, Rijks CP, Furnee CA, van den Wildenberg FA. Spinal cord stimulation in patients with chronic reflex sympathetic dystrophy. N Engl J Med 2000; 343: 618-624.

65. Polati E, Finco G, Gottin L, Bassi C, Pederzoli P, Ischia S. Prospective randomized double-blind trial of neurolytic coeliac plexus block in patients with pancreatic cancer. Br J Surg 1998; 85: 199-201.

66. Portenoy RK, Lesage P. Management of cancer pain. Lancet 1999; 353: 1695-1700.

67. Hanks GW, Conno F, Cherny N, Kalso E, McQuay HJ, Mercadante S, et al. Morphine and alternative opioids in cancer pain: the EAPC recommendations. Br J Cancer. 2001; 84: 587-593.

68. Pereira J, Lawlor P, Vigano A, Dorgan M, Bruera E. Equianalgesic dose ratios for opioids. a critical review and proposals for long-term dosing. J Pain Symptom Manage 2001; 22: 672- 687.

69. Cherny N, Ripamonti C, Pereira J, Davis C, Fallen M, McQuay H, et al. Expert Working Group of the European Association of Palliative Care Network. Strategies to manage the adverse effects of oral morphine: an evidencebased report. J Clin Oncol 2001; 19: 2542- 2554.

70. Mercadante S, Portenoy RK. Opioid poorly-responsive cancer pain. Part 2: Basic mechanisms that could shift dose response for analgesia. J Pain Symptom Manage 2001; 21: 255-264.

71. Mercadante S, Casuccio A, Fulfaro F, Groff L, Boffi R, Villari P, et al. Switching from morphine to methadone to improve analgesia and tolerability in cancer patients: a prospective study. J Clin Oncol 2001; 19: 2898-2904.

72. Fainsinger RL, Bruera E. When to treat dehydration in a terminally ill patient? Support Care Cancer 1997; 5: 205-211.

73. Ripamonti C, Bruera E. Current status of patient-controlled analgesia in cancer patients. Oncology 1997; 11: 373-380, 383-384, 384-386.

74. Oliver JW, Kravitz RL, Kaplan SH, Meyers FJ. Individualized patient education and coaching to improve pain control among cancer outpatients. J Clin Oncol 2001; 19: 2206-2212.

75. Ripamonti C, Dickerson ED. Strategies for the treatment of cancer pain in the new millennium. Drugs 2001; 61: 955-977.

76. Bennett G, Serafini M, Burchiel K, Buchser E, Classen A, Deer T, et al. Evidence-based review of the literature on intrathecal delivery of pain medication. J Pain Symptom Manage 2000; 20: S12- S36.

77. Smyth JM, Stone AA, Hurewitz A, Kaell A. Effects of writing about stressful experiences on symptom reduction in patients with asthma or rheumatoid arthritis: a randomized trial. JAMA 1999; 281: 1304-1309.

78. Chochinov HM, Breitbart W. Handbook of Psychiatry in Palliative Medicine. New York: Oxford University Press, 2000.

79. de Wied M, Verbaten MN. Affective pictures processing, attention, and pain tolerance. Pain 2001; 90: 163-172.

80. Lang EV, Benotsch EG, Pick LJ, Lutgendorf S, Berbaum ML, Berbaum KS. Adjunctive nonpharmacological analgesia for invasive medical procedures: a randomised trial. Lancet 2000; 355: 1486- 1490.

81. Redd WH, Montgomery GH, DuHamel KN. Behavioral intervention for cancer treatment side effects. J Natl Cancer Inst 2001; 93: 810- 823.

FLORIAN STRASSER, Oncology and Palliative Medicine, Section Oncology/Hematology, Department of Internal Medicine, Cantonal Hospital, St. Gallen, Switzerland, PAUL WALKER and EDUARDO BRUERA, Department of Palliative Care and Rehabilitation Medicine, Division of Cancer Medicine, The University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA

Copyright Center for Bioethics, Clinical Research Institute of Montreal Summer 2005

Source: Journal of Palliative Care

More News in this Category