The Initial Shock

When a person is first diagnosed with cancer, his or her world falls apart and death comes foremost to mind. “How long will I be able to live? Will my cancer be cured? Will I be suffering in pain” are some of the unavoidable, torturous, questions. Yet, just as passengers in a plane about to crash would pray that it will not crash, the patient prays for the best case scenario, not the worst.

This apprehensive state of mind is not as measurable by the doctor as is a blood pressure reading. Cancer patients, at first diagnosis, live in the immense hope that their doctors will do the best for them. They may not be able to comprehend the attendant financial burdens and other complications that will soon follow. The doctor’s responsibility on the other hand has to extend beyond the medical, into the aspects of how the illness is going to affect wider areas of their patients’ lives.

Rio, 42 years old, was diagnosed with advanced renal cell carcinoma. He was treated at a private hospital with oral chemotherapy medication. After just two months of treatment he was referred to the surgeon at the government hospital for feasibility of surgery. His case was brought up for discussion at the multi-disciplinary clinic. At the discussion the surgeon explained that surgery was not feasible and that the patient should continue to be on the same oral drug to which he was responding well. However his referring doctor explained that he referred the patient to the government hospital was because the patient could not afford to buy the drugs anymore as they were expensive. He said that the patient had not told him about his financial situation at the first consultation.

In this particular case, the patient, still reeling from the diagnosis of cancer, thought about starting his treatment immediately at a private hospital. He probably did not even think about the effect on his finances. The doctor, maybe in his haste to start treatment, may have overlooked asking the patient about his financial situation. Helping a patient work out the cost of treatment and inquiry into available insurance coverage is part of the process of planning treatment and buffering the shock of the diagnosis. Doctors must view the disease and the person as single entity, not separate.

Communication

Patients and their family members have every right to ask questions to get clarification and to expect that their physician will listen and try to answer their questions. Practice of such communication is the key to a good doctor-patient relationship.

Given that doctors work on a tight schedule, if there is no time to cover all bases at a current appointment, new appointments can always be made to address leftover issues and doubts. It is crucial that the patient finds a doctor who is willing to listen, makes eye contact and is happy to answer questions. A doctor who does not make eye contact may give the perception of disinterest in the patient’s questions and predicaments.

Patients can ease their anxiety and help themselves and the doctor a great deal, by preparing a list of questions they wish explanations on, and inform the doctor that they are going to ask some questions during their visit.

It would be good to organize the questions around issues such as treatment choices, medications, side effects, meals and food choices and help at home. The doctor may not know the answers to all the questions the patients have on their lists but he or she will be able to refer the patients to the appropriate person/s depending on each patient’s needs. Thus the patients can ensure they leave the doctor’s office feeling confident that they know what they are to do regarding medications and general care. If questions remain, they will know who they should contact next. It is also a good idea for patients to save this list of questions to refer to when they organize their thoughts for their next appointment.

Many parts of the world with culturally diverse societies, it is natural that the questions posed by the patients will be very much colored by their cultural and religious backgrounds, beliefs and habits. In this context doctors have to understand these cultures and incorporate that understanding into their handling of patients and their families. Ultimately this cultural empathy leads to building the trust that is crucial in a doctor- patient relationship and in turn helps doctors make decisions which are right for the patients.

Do We Need To Suffer Pain?
Pain

Our concept of pain is mainly physical. The first question that arises in a cancer patient’s mind, after the question of death is, “Will I have pain?”, “Will I die in pain?” The anticipation of a painful death is painful in itself.

Medical science has moved forward in leaps and bounds in terms of pain management for the terminally ill, but images of poor pain

control of the past are so ingrained in the minds of the public that for them cancer and pain go hand in hand. Pain is not absent in cancer and it will not go away with a couple of Panadol tablets. Hence pain management is also a vital part of cancer management. It is the right of a patient to receive good pain management.

Pain relieving drugs are not only for the dying but are meant to be used at any time during the entire trajectory of the illness. Unfortunately many doctors and patients still associate drugs with addiction. However addiction is defined as the craving for a drug to achieve euphoria, drug seeking in the absence of physical discomfort and the manipulation of prescribers to obtain drugs. There are numerous clinical studies that demonstrate that patients who receive narcotics for pain treatment under the supervision of experienced doctors do not become addicted. Those who do not have their pain treated usually end up making frequent hospital visits, seeking pain relief narcotics. This behavior is termed “pseudo addiction”, its features being that the patient is in pain and that the behavior is caused by negligence on the part of the health care providers. The result is manifest by the economic cost of patients making frequent visits to the doctor and taking up time that could be used to see more patients, the stress placed on the doctors, the emotional cost on the families and the retrogressive enforcement of the view that cancer is all about pain.

Obviously, there is more than one type of pain. We have been referring to the physical pain caused by the tumor or tumor-spread which is termed metastases. There is also psychological and spiritual pain.

The International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.” (1979)*

People with long term pain frequently display psychological disturbance with elevated scores in the phobic triad of hysteria, depression and hypochondriasis. Some investigators have argued that neuroticism causes acute pain to turn chronic but clinical evidence points to the reverse, i.e. to chronic pain causing neuroticism. When long term pain is relieved by therapeutic intervention, scores on the phobic triad and anxiety fall often to normal levels. Self-esteem, which is often low in chronic pain patients, also shows improvement once pain has been resolved.

Spiritual pain refers to the spiritual and emotional kinds of suffering commonly experienced by persons with life-limiting diseases. Spiritual pain manifests in the form of restlessness, dreams’ nightmares and at times even refusal to take medication. To get through such pain, one would need the services of a psychologist or counselor.

Since psychological and spiritual pain co-exist with physical pain, there is lack of awareness of their existence once the physical pain is under control. When doctors are not alert to this it can often lead to poor pain management. Next story is a case in point.