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Managing Palliative Care

It is not how long you live, but how well you do it.

Depending on the type of primary tumour, a cancer may progress by local recurrence or spread to distant sites, often involving the lymph node and vital organs like the liver. lungs, kidneys and brain. This distant spread is known as metastasis.

When all forms of treatments, be it surgery, or various combinations of chemotherapy or radiotherapy, have failed to curtail the disease and the cancer continues to spreads unchecked, it is known as cancer progression. Any type of therapy given to the patient from this point onwards is unlikely to benefit them, since the cancer has been found to be resistant to treatment. Whatever treatment is given may cause extreme toxicity and therefore a great deal of discomfort. When toxicity outweighs the benefits, when the side-effects cause more harm to the patient than the disease per se, and the quality of life suffers, what is the answer then?

All treatments targeting the cancer are withdrawn, and the patient moves to supportive or palliative care. Here one falls back on symptomatic care and a diet to maintain the nutritional needs of the patient.

Palliative Care, Pain and Nutrition

Palliative care is a multidisciplinary approach designed to improve the quality of life in serious, life-limiting illnesses like cancer that are beyond cure. It focuses on providing supportive care to relieve symptoms like pain, depression, breathlessness, fatigue, insomnia, loss of appetite as well as spiritual problems that may arise.



Patients are generalls end of life. They need regarding the condit complete picture enal Every coordinate m end-of-life voyage. Th ents are generally unaware of what to expect at the life. They need guidance, and also the whole truth the condition of their health. Understanding the e picture enables them to make informed decisions. bordinate must be known before embarking on this life voyage. The solace provided helps the patient live their lives as completely and comfortably as possible.

One view suggests that palliative care should actually in at the time of the diagnosis of cancer and continue throughout treatment, with follow-up care and end-of-life port towards the end. Instituting early palliative care was recommended in 1990 by the World Health Organization.69 Towards the end of 1990, based on two studies on end-of-life care, an expert panel documented the problems of patients and their needs.70 These centred around communication between the doctor, the family and the caregiver, addressing emotional issues and depression, as well as fulfilling the spiritual needs of the patient.

The Need for Palliative Care

The team for palliative care should ideally comprise a doctor, a nurse, a social worker/counsellor and a priest. Such a team would be geared not only to give solace to the patient, but also to help provide extra support and guidance to the caregivers and other family members that may help them deal with any kind of eventuality. Once contact and trust have been established, periodic visits or discussions with such a im would mitigate problems like pain, improving food and dealing with depression when they arise. This of care can be provided wherever desired, be it at home, in a hospital or a hospice.

In India, a caregiver is normally a family membere,spouse parent, son, daughter, or a sibling, sometimes even a friend Who helps the individual with the activities of daily living. The impact of having a terminally-ill patient at home on the family is profound. In such a predicament, it necessary to include all members of the family, even children and keep them abreast of the situation. Understanding the gravity of the illness through discussion not only provides involvement, but also the strength to endure the outcome of the illness. Moreover, it prevents anxiety and depression from setting in, which benefits everyone.

I met a friend whose son developed problems as a result of inadequate involvement in his father's care. They were a family of four and the father was diagnosed with terminal lung cancer. The mother was the primary caregiver. The daughter was in her late teens and had assisted her mother whenever the need arose. The son, in his early teens, was unaware of the seriousness of the situation. In fact, because of his age, family and friends were overprotective and shielded him from the reality.

The father died three months after being diagnosed and the young teenager was confused and consumed with guilt at not having done enough for his father. He failed in his final exam. It took him the better part of two years and multiple visits to a counsellor to overcome his guilt. People say that death is fulfillment of life, yet a death in the family had left this boy bereft and shattered, with little comprehension of why his life had changed so completely. Including him in the discussion earlier and involving him in the care of his father may have helped him understand and ultimately, cope better with the situation.

Palliative care touches on all aspects of a person's life and illness. Problems that arise are addressed as soon as they appear. As a result, the patient feels better cared for at all times, and the caregiver gets the appropriate and necessary guidance. Studies conducted on patients with metastatic cancer have suggested a significantly better outcome, in relation to the quality of life, mood and long-time survival, when palliative care was started early on in the course of treatment 71. This holistic approach to treatment, going treating the disease, is enormously comforting to ient and the family. Even caregivers of the patients ving early palliative care fared better and had lower rates of depression.

 

Due to the numerous demands of the illness on the the recommendations for healthy eating differ from of normal individuals. Before addressing nutritional canceros, it is essential to assist with any physical symptoms wch as pain and sleeping trouble. It is also important to ognize and find solutions to social, mental and spiritual problems. Loss of appetite and nausea need attention tootheir management has been detailed earlier in this book, (see . 104-05). Once all these problems are ameliorated, it is easier to concentrate on nourishment.

Managing Pain

The threshold and tolerance for pain varies from person to person. However, once pain appears, however mild it may be, it needs immediate attention and management, and it should not be ignored. A record of the levels of pain, on a scale of 10, could be maintained by the patient before pain therapy is started. This measurement can be used as a yardstick for further pain management. Any variation in the pain, whether in the day or at night, should also be noted.

The best approach to pain care is the preventive approach: start treatment early when the symptoms are bild. If suffering is controlled, it automatically improves the quality of life. The patient eats better, sleeps well and the mood remains uplifted.

Great inroads have been made in the understanding of therapy. It is possible to keep the patient pain-free at all ith round-the-clock medication. Dosage adjustments are made whenever pain reappears. times with round-the-cloc can be introduced whe whenever pain reappears. Stronger medication introduced when needed. Many drug combinations work their magic through the different pain pathways. Barch tackled individually. The WHO ladder for cancer pain is an inexpensive and effective method for relieving cancer pain in up to 90 per cent of patients.

Managing Sleep

Apart from pain, there are many causes of sleeping disorders in patients with cancer. Attempts could be made to reduce dependence on sleep medication. One should use either natural or artificial lamps to provide light stimulation therapy. Timed light exposure helps regulate the circadian rhythm and establish a regular sleep-wake cycle. The circadian rhythm is a twenty-four-hour cycle of physical, mental and behavioural changes that are common to most living things and occur in response to light and darkness.

Other measures that also help are:
  • Deep breathing exercises for relaxation;
  • Maintaining sleep hygiene by going to bed more or less at the same time daily;
  • Not trying to sleep immediately after a heavy meal; Stimulus control by spending less time lying down in bed;
  • Stress reduction;
  • Sleep restriction procedures to limit day-time sleeping.
Managing the Daily Routine

Providing a routine to the patient, with many activities such as meeting friends and other social interactions, exercise, regular meals, and recreational activities and hobbies, gives some structure to the patient's day. These need to be factored into the time-table.

Managing Nutrition

Even though it may be short-lived, the immediate effect of the withdrawal of chemotherapy is the improvement in the patient's general condition Gradually, some of toxi effects of the treatment begin to fade away. The relief, after Garduous journey through unrelenting chemotherapy, with complications, is dramatic and welcome. The petite improves, nausea and fatigue decrease. The need the hour is to capitalize on this situation and provide all the nutritional support possible. Food acts as a survivorship intervention-its major goal is to minimize cachexia.

Cachexia

In palliative care, the main focus of nutrition is on improving the quality of life and relieving suffering. Cachexia is a wasting syndrome with extreme, progressive and persistent weight loss. It occurs in many chronic diseases as well as in cancer. It is caused by a large group of substances called cytokines. These may be proteins, peptides, or glycoproteins that are secreted by specific cells of the immune system to mediate and regulate immunity, inflammation and white blood cell formation. They are produced as a natural defence against malignancy or inflammation. However, the immunological overreach, meant to alleviate inflammation, comes back to haunt the body. These substances act as double-edged swords—initially, as helpful molecules fighting the disease; however, their overproduction for sustained periods of time can act as a signal for cachexia.

To maximize health benefits and to get the best results, nutritional changes should be introduced early in the course the disease. The philosophy here is to make every gulp and morsel count. Increasing the frequency of eight per day may be the answer. Calories and proteins should be ensure with every meal or snack be ensured with every meal or snack (owing to the ed appetite of the patient). This may entail the use six to eight per day should be ensured with decreased appetite of nutrients like fish oil, vitamins and selective nutritional supplements of proteins.

Proteins are the building blocks for the repair and maintenance of muscle mass, as well as a necessity to propping up the immune system. The protein needs patients may be double that of normal individuals. The un everyday requirement is 0.8 grams of protein per kilogram of body weight per day. This should be increased to 1.4 to 2 grams per kilogram of body weight per day.

RECOMMENDATIONS FOR INCREASING PROTEIN INTAKE
  • Add one cup of skimmed milk powder to 1 litre of full cream milk or 1 cup of evaporated milk to 2 cups of regular milk. This milk should be used for the patient's every need, including cereal, coffee, milk drink with chocolate, milkshake with banana, or even to set yogurt.
  • Add protein powder to fruit or vegetable juice.
  • Nutritional supplements such as commercial protein powders with minerals and vitamins should be used. These can be mixed in milk to provide extra proteins.
  • The patient can be fed every two hours when the intake of food is markedly reduced. To help with compliance, the day's menu should be discussed with the patient.
A Meal In a Bowl

Soups can serve as a complete meal. A soup is easy to consume and can provide for most of the nutritional needs of the patients, particularly when the loss of appetite is severe. The stock gives body to the soup and provides muchneeded proteins. The stock can be made from chicken, meat or lentils, depending on the preferences of the patients.

Meat/Chicken Stock (5 servings):
  • Wash 2 kg mutton bones with some meat on them well. A couple of marrow bones in addition give better flavour. For chicken stock, use half a medium chicken with bones in place of the mutton bones.
  • Add meat, bones and sufficient water, about 2 to 2.5 litres and bring to a rolling boil.
  • Turn down to a simmer and skim any foam that collects.
  • Now add 1 teaspoon salt, 14 medium sliced onions, 2 bay leaves, 1 small chopped turnip, a sprig of parsley and 4 to 6 peppercorns.
  • Simmer partially covered for one and a half hours. This ensures the maximum extraction from the meat.
  • Strain through two layers of coarse cloth.
  • Cool, skim off fat that forms a crust on top.
  • If greater concentration is required, simmer further to desired taste.
Lentil Stock (5 servings):
  • Wash 1 cup lentils.
  • Boil in 6 cups of water. Bring to a rolling boil.
  • Turn down to a simmer add 1 teaspoon salt, 1 small onion sliced, 1 bay leaf, 12 turnip chopped, 4-6 peppercorns, 1 teaspoon each of turmeric, cumin and coriander seed powder.
  • Simmer for half an hour. Skim off the froth.
  • Pass through a sieve.
Note:

After preparing the stock using the above recipes, one can all kinds of soups: lentil, mixed vegetable, cream of tomato/carrot/broccoli/mushroom, pumpkin or fish soup.