Q.1 I/my family member has cancer. Does that mean that I/he/she will die soon? Ans. That is not true. Of course, cancer is a disease where life is at risk, but almost 1/3 of all cancers patients are cured. It is possible to ensure a comfortable period of survival in some patients who cannot be cured. It is also important to remember that different cancers have different outcomes. Moreover, various factors such as stage of the disease, the general condition of the patient, etc., also determine the course of the disease. In short, every individual has his/her own prognosis and there is no reason to believe that all cancers mean early death. It is best to discuss the prognosis of the disease with the treating oncologist. Q.2 What is palliative care? Ans. Palliative care is 'care beyond cure'. It involves the total care of the patient and his/her family when the disease is no longer responsive to curative treatment. The goal is to provide physical, psychological, spiritual and social support to the person in order to enable him/her to have a qualitative and comfortable life in the last stages of his/her disease. Q.3 What is home based palliative care? Ans. Home based palliative care is care that is offered by a multi-disciplinary team of professionals trained in Palliative care at the home of the patient. Q.4 What is a hospice? Ans. A hospice is a facility where patients who cannot be looked after at home, and are at a terminal stage of their illness are brought in and administered palliative care as in-patients. Q.5 Which organisations offer Palliative care in Delhi? Ans. In Delhi there is a hospice for people with terminal cancer, as well as a free home care programme run by CanSupport which looks after patients with advanced cancer in their homes. Should you need any further information, kindly contact the CanSupport office at Kanak Durga, Basti Vikas Kendra, Sector 12, R.K. Puram, New Delhi-110022. Tel.: 26102851, 26102859, 26102869. Email: cansup_india@hotmail.com Q.6 Should a patient with cancer be told about his/her disease? Ans. Most patients who are sick want to know more about their illness. Due to a change in the attitude of family members, frequent visits to the hospital and to the cancer department, most patients have a fair idea of the nature of their illness. It is generally believed that revealing the diagnosis would make the patient lose hope. On the contrary, most people feel more confident and in control when they know what they are facing. However, it is important to cautiously probe how much the patient already knows and desires to know regarding his illness. Addressing the patient's questions and fears often helps in reinforcing trust between the patient and the caregivers. Assistance from a health professional may be helpful in breaking the diagnosis and discussing the prognosis with the patient. Q.7 Is it true that cancer means unbearable pain? Is death due to cancer painful? Ans. A large number of patients with cancer have pain as it advances. With appropriate treatment, however, pain can be alleviated, almost completely, in up to 90% of patients. With the availability of strong analgesics like opioids (codeine/morphine), at the terminal stage pain too can be relieved to a great extent. Q.8 How is cancer pain controlled? Ans. Cancer pain can be alleviated by different drugs as well as by non-medical methods depending upon the cause and nature of the pain. Drugs generally give adequate relief provided they are taken in the right dose and at the right time. The drugs commonly used to control pain are analgesics (paracetamol, diclofenac, nimesulide, codeine, buprenorphine, morphine, etc.), Antidepressants, anticonvulsants, antispasmodics, musele relaxants, corticosteroids, etc. also help in controlling pain. Q.9 What is the role of morphine in the management of cancer pain? Ans. Morphine, a narcotic, is a very effective drug, which is used to control severe cancer pain. The dose is adjusted according to individual requirements. Morphine when used for controlling pain does not cause addiction. Some people may experience an initial drowsiness or nausea and vomiting which settle down within a week. Constipation is an often encountered side effect but it can be easily controlled with the appropriate use of laxatives. Morphine is not a freely available drug and can be dispensed only under a license. You should contact the treating physician regarding the availability of morphine. It is very essential to follow the doctor's prescription meticulously while taking morphine. Q.10 Apart from medicines, what are the other measures that can help reduce pain? Ans. Massage sore spots like neck and shoulder muscles, give back rubs and foot massages. Use of warm bath or compresses or cool cloths help to relax muscles and relieve pain. Play relaxing music, use meditation or prayer to distract the patient from thinking about being uncomfortable and to help him/her relax. Encourage deep breathing exercises to relax tight muscles and reduce tension. Allow the patient to participate in family chores and activities, whenever possible, to distract him/her from pain. it is to be remembered that pain is not merely a physical phenomenon. It has a psychological and emotional component too. These may be responsible for the persistence of pain despite aggressive pharmacological treatment. Hence, it is very important to share the patient's worries, fears and anxieties. Q.11 My relative with cancer has a reduced appetite. What should I do? Ans. Anorexia (reduced appetite) is a common symptom in advanced cancer. It may have a variety of causes, dyspepsia, constipation, sore mouth, pain, unappetizing food, too much food offered etc. There may be causes such as altered taste, dryness of mouth, and, cachexia caused by cancer which are less response to treatment. Consult the doctor for evaluation and treatment of any of the remediable causes. Cancer cachexia (severe weight loss) which is responsible for anorexia and for the progressive weakness faced in over 50% of patients with advanced cancer does not co-relate with the amount of food ingested and is usually not responsive to drug treatment. Corticosteroids and progestogens have been used with little benefit. As a caregiver, simple measures may be taken to make the patient feel more at ease. - Do not think "they must eat or they will die". Emphasis should be on allowing the patient to decide the type and amount of food he/she wants to eat. Do not force feed the patient. - Adjust diet to counter taste changes. Give smaller helpings of food at more frequent intervals. - If the patient can only take liquids, vary the diet with juices, curd, coconut water, soups, etc. to made it more interesting. Q.12 Are there any dietary restrictions for a patient with advanced cancer? Ans. Unless otherwise advised by the doctor, there are no dietary restrictions. Allow the patient to eat whatever he/she desires. Try to introduce variation in the diet. Q.13 What can be done to overcome sleeplessness? Ans. Insomnia (sleeplessness) is a frequently encountered symptom but can be controlled using simple measures. Insomnia caused by pain, anxiety, depression, breathlessness etc. can be overcome by treating the underlying cause. Ensure that the patient has a comfortable mattress to sleep on. Adjust posture to suit the patient's comfort. A glass of warm milk at bedtime can be of benefit. Avoid stimulating drinks like tea/coffee/alcohol before bedtime. The patient's room should be away from loud noises. If required, sedatives may be prescribed after consultation with the doctor. Concerns regarding the disease and its outcome, decreased self-esteem, feeling of being dependant, loss of role in the family, financial insecurity, worry about the family, fear of the future etc. also contribute to insomnia. Discuss with the patient his/her fears and anxieties and encourage him/her to share feelings. Q.14 Can radio therapy/chemotherapy help in controlling symptoms of advanced cancer? Ans. Radio therapy and chemotherapy can be of benefit in certain situations. These will need to be carefully assessed by the treating team. While radio therapy can help alleviate pain, bleeding, spinal cord compression, difficulty in swallowing, etc. chemotherapy can help to temporarily improve the quality of life in certain cancers. It is best to discuss this with the treating doctor/palliative care team. Q.15 Should I rush my relative with terminal cancer to the hospital if his/her condition begins to deteriorates? Ans. In the advanced incurable stage of cancer when the patient is receiving palliative care which is characterised as terminal, it may not be beneficial to rush the patient to hospital. The process involved in shifting such a patient to the hospital, the use of invasive procedures, keeping the patient isolated in the ICU, use of life supporting equipment like ventilators, etc., increase suffering without significantly altering the course of the disease. Unlike many other curable diseases, where such measures might be beneficial, in the terminal stage of the cancer, patient's comfort requires greater consideration. Distressing symptoms can usually be taken care of at home with help from the palliative care provider. However, patient preference should be respected. Most patients prefer familiar surroundings during the terminal stage of their life. Q.16 How do I recognise that death is approaching? Ans. A number of changes occur that indicate that death is approaching. Breathing usually slows down, some pauses between breaths may last longer than a minute. He/she might appear to be in a state of very deep sleep. He/she may or may not awaken during this period. Breathing may turn noisy due to secretions collecting in the throat. There will be less movement, an observable loss in strength and reduced awareness and interaction with the surroundings. The person may start hallucinating or become restless and disoriented. He/she will urinate very little, will be too weak to move and will be unable to eat or swallow. However, these are general symptoms and not all might appear in all patients. Q.17 How can I take care of my relative near the time of death? Ans. 1. Do not panic. 2. Continue giving narcotics and pain medicines in as prescribed even if the patient appears to be in a coma. 3. Ask the doctor what pills can be stopped so that the least number of pills need to be given. Ask if any pills can be crushed and mixed in a small amount of liquid or in soft substances such as jam & honey, to make them easier to swallow. Enquire about alternative means of administering a medicine if the patient cannot swallow. There are tablets that dissolve under the tongue or medication can be given as a rectal suppository or by injection. 4. In case of breathlessness, loosen clothing prop up the patient, allow air to blow across the face and chest (a table fan may be used) and encourage slow breathing and relaxation. 5. If there has been no bowel movement during the last 4-5 days, give a rectal suppository/enema to make the bowels move. 6. Moisten lips with cool water. 7. If the eyes are dry/sticky, clean the eyes with clean cool water two to three times a day. 8. Massage the hands, fingers, wrists, legs to keep the joints moving. 9. Expect less amount of urine as compared to when the patient was better. 10. Change underpants/diapers frequently if the patient cannot control bowel movements or the passage of urine. Expose the genital areas to air for at least ½ hr each day to keep the area as dry as possible. Change the patient's posture every ½ hr to prevent formation of bed-sores. Holding the person's hand can be very comforting and meaningful at this time. It is important to continue to talk and offer reassurance even though the person appears to be slowly withdrawing. Simply saying "I'm here and I'll be with you" offers great support and comfort.