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Goodfellow Symposium 2007 Total pain – physical, psychological and spiritual Professor Rod MacLeod THE CONCEPT OF TOTAL PAIN The concept of total pain has been well established since Cicely Saunders began talking about pain in the 1960’s. One of the difficulties, however, is that most health professionals are trained predominantly to deal with the physical aspects and perhaps more recently, psychological aspects of pain. It is often difficult to identify spiritual and social let alone other dimensions of pain from the way that we are trained. The importance of the multi-disciplinary approach is emphasized by the inability of one person to identify all these aspects of an individual. It is important also to remember that any symptom may have a number of different dimensions to it – ‘total’ breathlessness and ‘total’ nausea, are well established. Who hasn’t been breathless with excitement or anticipation; who hasn’t been sick with fear or worry? One of the difficulties that we face in palliative care is that the focus may be often on the pain rather than the person. We are well accustomed to dealing with nociceptive and neuropathic mechanisms and psychological processes. Physical components, social isolation, family distress, and spiritual loss, can all be addressed by the multi-disciplinary team. These components often lead to a perception of pain, but isn’t the real problem our attempt to alleviate suffering? Suffering is something which we can all identify. Suffering is something which is unique to each of us. I would contest that all suffering can be relieved. I believe it to be part of the human condition. We can certainly alleviate some aspects of suffering, but as will be seen later, there are some things that cannot be fixed. PHYSICAL PSYCHOLOGICAL TOTAL PAIN SOCIAL SPIRITUAL PHYSICAL PAIN NOT DIRECTLY RELATED TO CANCER We are all comfortable, I think, with the physical aspects of pain. Much of palliative care is concerned with cancer and cancer pathology and we are well used to dealing with that. Just because you have cancer, it doesn’t mean to say that you are protected from non-cancer pathology. Bunions, haemorrhoids, indigestion, tension headaches – all will produce pain and if not addressed, will go untreated. Much of the therapy that we offer people is painful. It is perhaps easy to forget how painful surgery may be or radiotherapy, even chemotherapy can produce pain. The debility that goes with long term ill-health can allow us to feel the pain more acutely. NEUROPATHIC MECHANISMS PSYCHOLOGICAL PROCESSES PAIN NOCICEPTION PHYSICAL COMPONENTS SOCIAL ISOLATION FAMILY DISTRESS SPIRITUAL LOSS SUFFERING ANGER One of the aspects of palliative care which is difficult to adjust to is the concept of anger producing pain. Much has been made of the “chronic niceness” of hospice staff. It is perhaps difficult to express anger with those who are caring for you but bureaucratic bungling, delays in diagnosis and treatment and the unavailability of doctors are all just causes for anger. The ultimate failure, therapeutic failure, is enough to create anger within us all. Modern medicine creates the belief that we can cure most things. The reality is that there are still many things that are unresolved and at the end of life, people are often angry about the process that they have been through in an attempt to cure their disease. Allowing this anger to be expressed can alleviate some of the distress that anger causes. ANXIETY AND FEAR We all have anxieties and fears; we all worry about our family, about finances and about the future. Many of us will worry about the process of dying, the potential loss of control and the increase in suffering or even the blackness of death. Talking to spiritual counselors and other carers can often alleviate these problems, but a fear that is more difficult to alleviate is the fear of losing dignity. As the body weakens, it is often hard to understand how one can remain in control. Many of the things which are “done” to people who are dying, by necessity, are undignified. Many of us fear our own inappropriate speech, delirium or incontinence. SADNESS One of the most difficult concepts to get across to many is that death is almost always sad. Sadness is something that cannot be alleviated by medication. Sadness results from various losses; loss of independence, loss of our future, and loss and change in our roles within society. We may remain a father, a brother, a son, a friend, but when sick, those roles will necessarily change. The helplessness which goes with chronic illness and weakness is frightening. The disfigurement that brings sadness is not the gross changes of an amputation or a mastectomy but the subtle changes in skin texture or colour, the loss of weight, the greying or thinning hair. SPIRITUAL UNREST/DISTRESS Finally, in this picture comes the problem of spiritual unrest. Spiritual care in any setting is not easy to define and is often subjective, arbitrary and personal. It is generally assumed to include an individual’s beliefs, values, sense of meaning and purpose, identity, and for some people religion. It may also encompass the emotional benefits of informal support from relatives, friends, religious groups and more formal pastoral care. For many, existential questions about the human condition can be ignored during many phases of life but are brought into acuity at the end of life. Because of the intensely personal nature of spirituality it may be tricky to identify specific issues for individuals but the concepts of hopelessness and lack of understanding are perhaps easier to identify with. We all have secrets; we all have an element of guilt within our lives that may come to haunt us at the end of our life. Allowing these fears to be expressed and some of that hopelessness and helplessness to be verbalised, can relieve some of the spiritual distress that contributes to pain. This then is one further aspect, one other dimension of the totality of pain. DEBILITY HELPLESSNESS THERAPY SIDE EFFECTS NON CANCER PATHOLOGY LOSS GUILT of independence of future of roles LACK OF UNDERSTANDING CHRONIC FATIGUE AND INSOMNIA CANCER SPIRITUAL UNREST HELPLESSNESS DISFIGUREMENT PHYSICAL SADNESS TOTAL PAIN ANGER BUREAUCRATIC BUNGLING DELAYS in diagnosis in therapy UNAVAILABLE DOCTORS THERAPEUTIC FAILURE ANXIETY FEAR of dying of pain or suffering of death WORRY about family about finances about future LOSS OF DIGNITY ASSESSING PAIN Pain is not a universal symptom. Three-quarters of patients with advancing cancer will experience pain which of course means that one-quarter will not. Of those that have pain, one-fifth will have only one pain. One third will have four or more pains; this is important to remember when making the assessment. So what to do with the pain that you have identified? TREATING PHYSICAL PAIN The WHO analgesic ladder is now well established as the most effective means of treating cancer pain. It is self-explanatory. The rules of the ladder are that wherever possible, medication should be given by the mouth, by the clock, for the individual. When one reaches the maximum dose of the first step, move on to step two. There is a tendency to miss out this step and move straight to strong opioids. This should be avoided. The advent of the ingestion of opioids is a frightening phenomenon for most people. Most people’s perception of morphine is that it indicates the end. The introduction of opioids by the use of codeine or dihydrocodeine or the addition of tramadol is often a useful way to help people grow accustomed to this change in their life. Slow release preparations are available and can be titrated to an individual’s pain. However, once the maximum dose of the weak opioids is reached morphine should be started without delay. Once again it is important to give the drug by the mouth, by the clock, if possible. Morphine is a four-hourly drug and should be titrated using four-hourly preparations. Once a stable dose is reached, then a long-acting preparation such as M-Eslon can be utilised. M-Eslon is a 12-hourly drug. PRINCIPLES OF ANALGESIC USE The Analgesic Ladder STEP THREE STEP TWO STEP ONE STRONG OPIOIDS morphine oxycodone fentanyl methadone WEAK OPIOIDS & NSAID codeine dihydrocodeine tramadol SIMPLE ANALGESICS & NSAID paracetamol ibuprofen aspirin ALWAYS REMEMBER Co-analgesics Specific therapies (radiotherapy, surgery,chemotherapy,hormone) If the dose of morphine is not sufficient, the correct way to proceed is to increase the dose of long-acting not to reduce the time interval between doses. Only a tiny proportion of patients require long-acting opioids at a shorter time interval than 12 hours. For all intents and purposes, long-acting opioids should be given twice a day. The dose should be increased until the opioid sensitive pain is alleviated. The potential now to utilize differing opioids in New Zealand has increased. Oxycodone is relatively new to New Zealand and is a real alternative to morphine. It seems to have more effectiveness for neuropathic pain and so is particularly useful if there is a mixed pain picture. It has great oral bioavailability than morphine so should be given in lower milligram doses (about half). It is formulated in normal release (oxynorm) and continuous release (oxycontin) preparations. Liquid and parenteral preparations are available but currently have a part charge. Fentanyl is another real alternative – particularly useful as it is a transcutaneous preparation and therefore useful when the oral route is compromised. It is available in fixed doses that are particularly useful when pain is stable –currently no immediate release preparation of fentanyl is available in New Zealand. Methadone is a difficult drug to use in the community and specialist advice should be sought about introducing it. It is another opioid that is valuable in the management of mixed pain, where there is thought to be a neuropathic element. Always remember to consider the use of co-analgesics such as non-steroidals, steroids, anti-convulsants, anti-depressants and possibly anti-arrhythmics, for the relief of opioid semi-responsive pain such as neuropathic pain. Remember too, to employ specific therapies (radiotherapy, surgery, chemotherapy or hormone therapy) to aid in the quest for analgesia. The following list indicates the commonest pains of a group of patients admitted to an inpatient hospice. It can be seen that not all of these are directly related to the malignant process itself. Commonest pains Bone Visceral Neuropathic Soft tissue Immobility Constipation Myofascial Cramp Oesophagitis Degeneration of the spine There are obviously other factors which affect the pain threshold. It is easy to identify things other than pharmacological agents which can change the perception of pain. FACTORS AFFECTING PAIN THRESHOLD Threshold Lowered Discomfort Insomnia Fatigue Anxiety Fear Anger Sadness Depression Boredom Mental isolation Social abandonment FACTORS AFFECTING PAIN THRESHOLD Threshold Raised Relief of other symptoms Sleep Sympathy Understanding Companionship Creative activity Relaxation Reduction in anxiety Elevation of mood Analgesics It is important to employ all of these factors in an attempt to change the pain threshold – analgesics are just one part of a total approach to pain management. Failure with opioids is often related to one of the following: 1. Opioids are often under prescribed because of fears that: • tolerance will rapidly develop • addiction will be a problem • there will be depression of respiration • the patient may use the drug for suicide • the relatives may use the drug for euthanasia • the opioid will be stolen by or sold to an addict 2. Neurolytic procedures are not employed 3. Inadequate attention is paid to insomnia. 4. Impaired absorption of the drug due to gastric pathology, etc. 5. Renal function has not been assessed. With meticulous attention to detail, it is possible to reduce pain in almost all cases. Over 90% of cancer pain can be alleviated. Meticulous attention to detail is the hallmark of good palliative care and with that detail employed by a multi-disciplinary team, pain as a major symptom should be alleviated for the vast majority of people with advancing disease. R D MacLeod/Auckland/4.04