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- Protocols for a lifetime of pain management for patients suffering constant, incurable, excrutiating, unrelenting pain
Last updated on: August 10, 2017
The current thrust to humanely identify and treat pain is uncovering a group of patients with severe, chronic intractable pain (IP). While epidemiologic surveys indicate that over 40% of the adult population has chronic, recurrent pain, mainly due to musculo-skeletal degenerative conditions, there is a sub-group of tragic individuals who suffer constant, excruciating, unrelenting pain.1,2 To separate these patients from the more prevalent chronic pain patients, these patients are commonly referred to as IP patients.2 Most states in this country have recently passed IP laws or established guidelines and standards to allow physicians to prescribe opioids and other end-stage treatments to these individuals without legal repercussions. Since IP patients always have an underlying, incurable disease or condition causing IP, their clinical management is complex and may require a specialized clinical setting. Just as renal failure or insulin-dependent diabetes require lifetime care by a cadre of specialized medical personnel, IP likewise requires similar lifetime care due to its incurable nature.
Who Is the IP Patient?
The authors define IP as “pain that is excruciating, constant, incurable, and of such severity that it dominates virtually every conscious moment, produces mental and physical debilitation and may produce a desire to commit suicide for the sole purpose of stopping the pain.” In the authors’ clinical experience, bonafide IP patients suffer profusely and are fundamentally bed- or house-bound in the absence of intense medical management.3 Table 1 presents some common characteristics of the IP patient.
A variety of traumatic and medical conditions may be the underlying cause of IP (see Table 2). Note that over half of them involve spine degeneration.
IP patients become identified as they systematically fail the usual treatments for acute and chronic pain including anti-inflammatory, mild opioid and non-opioid analgesics, antidepressants, muscle relaxants, and anti-seizure medications. They also don’t respond well to corticosteroid injections in and around the spinal column or peripheral nerves. Physical therapy, exercise, and psychological interventions have usually been to little or no avail because the pain is so profoundly uncontrolled that participation in these therapies is not possible. Potent opioid lifetime therapy is the only treatment to date that has proved to consistently control pain in these individuals. This treatment should be regarded as an end-stage or last resort due to its expense and inherent complications.
Obligation Of Documentation
The physician and ancillary clinical staff must carefully document the presence of IP on the patient’s chart. Not only do most states require documentation for legal purposes, medical management of IP is a lifetime treatment that utilizes potent medication having potentially deleterious complications. At a minimum, the documentation must include medical records that reveal the presence of an incurable, painful condition and unsuccessful treatment attempts with the usual therapies for chronic, recurrent pain. Patients, together with family members or caretakers who are required to accompany them to their appointments, need to provide a detailed history of the onset of IP and subsequent failed treatment attempts. A physical examination is directed toward identifying physical evidence of the cause of pain and neuro-muscular abnormalities that are fixed, incurable, and irremovable. IP, in an uncontrolled state, will invariably demonstrate physiologic or laboratory abnormalities, since IP causes over-excitation of the cardiovascular, autonomic, and hypothalamic-pituitary-adrenal systems. Common physical signs and symptoms include tachycardia, hypertension, mydriasis, hyperreflexia, anxiety, and depression.
Goals Of Treatment
Once the diagnosis of IP is established, both immediate and short-term treatment goals should be quickly established. Often, the undiagnosed or under-treated IP patient is so ill and bed-or chair-bound that diet, ambulation, and hygiene have been severely neglected. Some uncontrolled IP patients make frequent visits to an emergency room just to obtain a modicum of relief. Physicians should initially attempt to determine one opioid that family and patient report to be effective and prescribe this opioid in a dosage and frequency adequate enough to stop emergency room visits and allow the patient to ambulate, begin a proper diet, and attempt to return to normal activities of daily living. Physiologic abnormalities such as tachycardia, hypertension, and altered adrenal hormone concentrations should be identified and serve as biologic markers to gauge treatment effectiveness. Pain monitoring utilizing a pain scale noting severity from 0 (no pain) to 10 (severest pain) should be used to help control pain. The long-term goals are to help the IP patient become ambulatory and be able to leave home to shop, socialize, and possibly work. Psychiatric conditions, particularly depression and suicidal tendency should be treated. A good quality of life, to the extent possible with medication, is the goal — rather than an impractical one, such as withdrawal from all medication or seeking a “miracle” treatment or the elusive cure. Life extension and improved quality of life is clearly possible if IP is controlled.
Management of Baseline and Breakthrough Pain
Baseline pain is the constant, ever-present pain that is consciously perceived be the IP patient. A long-acting opioid is used to suppress baseline pain.4 The following medications are available for this task: methadone, sustained-release morphine and oxycodone preparations, and transdermal fentanyl (see Table 3). Long-acting opioid therapy is initiated at a low dose and titrated upward to achieve maximal pain suppression without sedation, bradycardia, and hypertension.
Despite the administration of a long-acting opioid, there may be breakthrough pain, which is temporary and has excruciating intensity above the baseline pain. Breakthrough pain is treated with a short-acting opioid such as hydromorphone, hydrocodone, meperidine, or oral transmucosal fentanyl (see Table 3). Sometimes breakthrough pain is so intense that it may force the suffering patient to seek emergency room treatment. Emergency, breakthrough treatment is best treated by oral transmucosal fentanyl or an opioid suppository. These preparations provide ultra-rapid breakthrough pain relief within 5 to 10 minutes and prevent emergency pain situations. Monitoring and management of opioid therapy routinely requires a monthly clinic visit. Tolerance may occur to either long- or short-acting opioids. When this occurs, a rotation to a different opioid is necessary. Opioid therapy should be continued indefinitely, including a lifetime — unless the underlying cause of IP can be markedly reduced or eliminated. Detoxification or withdrawal should not be attempted unless IP is permanently and markedly reduced, otherwise IP will simply re-emerge following detoxification and force the patient to return to a bed- or house-bound, vegetative state.
Physical Therapy and Exercise
Once opioids control IP, the patient can begin measures to strengthen his/her musculo-skeletal system and hopefully reduce pain on a permanent basis. Stretching exercises involving the afflicted anatomical structures that produce IP are essential. Patients should be taught stretching and strengthening exercises that they can practically accomplish each day for their lifetime. Weak or degenerative anatomic structures may benefit from a prosthesis, specially-fitted shoes, or walking stabilization with a cane or walker.
Family and Community Support
Patients may enter IP treatment after they have been medically and socially isolated for many months or years. The authors require a family member or caretaker to accompany the patient until the patient can mentally and physically function well enough to comply with the treatment program. Community resources should be greatly utilized. These may include psychological therapy, religious participation, vocational rehabilitation, and transportation. Local mental health resources can be invaluable. A pharmacist who is familiar with IP is essential to supply medications for lifetime management.
Considerable weight gain is a major clinical problem among many IP patients. In some, excess weight is a major, contributing factor to spinal and skeletal degeneration. Once IP develops, patients are unable to move and ambulate in a normal manner, so weight gain ensues. IP patients eat little protein in favor of sugars and starches, since pain and opioid drugs apparently alter insulin and blood glucose concentrations and cause “carbohydrate craving.” Treatment includes teaching the patient to follow a diet that maximizes protein and minimizes carbohydrate intake. Exercise must be tailored to each IP patient’s ability to ambulate and mobilize extremities. Anorexiants and other metabolism-enhancing compounds should be attempted in severe cases.
In addition to opioids, IP patients will invariably require some adjuvant medication for such problems as insomnia, muscle spasm, depression, and attention deficit. Topical analgesics are also especially helpful — with the following providing satisfactory outcomes: morphine, carisoprodal, aspirin, and dehydroepian-drosterone (DHEA).
Hormone and Neurotransmitter Replacement
This emerging aspect of IP treatment is promising. Testosterone deficiency appears very prevalent in males and females, so serum testosterone concentration should be determined. Opioids may cause gonadal suppression, and it is possible that pain, per se, may contribute to hypogonadism.5 The authors routinely determine serum pregnenolone concentration, since it is the precursor of all sex and glucocortioids, as well as being a neurotransmitter. If it is low, pregnenolone supplements are administered. Gamma-Aminobutyric Acid (GABA) is a major neuroinhibitor in spinal cord and peripheral nerves. IP may deplete these neurotransmitters, so daily supplements are a safe, inexpensive adjunct that many patients anecdotally believe assist overall pain control. Research shows that IP over-stimulates the hypothalamus-pituitary-adrenal axis, which initially causes over-secretion of pituitary and adrenal hormones, but uncontrolled, chronic IP may also cause suppression of cortisol and other adrenal hormones which may require replacement for pain control, health maintenance, and proper immune function.6
The Drug-Abusing Patient
Unfortunately some drug addicts insinuate their way into IP treatment programs by feigning pain. Others may have some legitimate pain, but exaggerate complaints to obtain opioids and other drugs. These abusers reveal themselves by such behavior as requesting early medication refills, “losing” medication, selling or sharing medication, and non-compliance with program rules. Regardless of pain severity, a patient who abuses or diverts opioid drugs or fails to follow program rules cannot be managed for a lifetime in an IP program. The authors recommend that, once identified, individuals with abusive tendencies with opioids be referred to the local methadone maintenance program for daily narcotic administration. Once their addiction or abuse is stabilized by methadone maintenance, pain treatment measures may then be instituted.
Clinic Setting for Lifetime IP Treatment
The challenge to pain practitioners is to establish outpatient, clinical settings which can provide lifetime medical management of IP. Proper treatment over the lifetime of the patient will require a number of different interventions, including medication, physical therapy, psychologic support, spiritual awareness, and palliative care.7 Table 4 summarizes the dimensions of care required for successful lifetime management of IP.
IP clinical treatment sites should be in the community where the patient resides so that patients can avail themselves of community resources. IP patients should be encouraged to join a self-help support group or, if not locally available, form their own group. Although technical, sophisticated medication and therapies are essential for IP treatment, the most important element of IP treatment is continuity of care for a lifetime.