Psychosocial Aspects of Palliative Care

Mrunal Marathe, Medical Social Worker, Patient Care Department, Cancer Patients Aid Association wrote the following article for inclusion in the Handbook of Palliative Care which is brought out at regular intervals by the Palliative Care department of Tata Memorial Hospital. The article encompasses her experiences as a counselor in the department for the past three years.

Statistical data as well as our own common knowledge indicates that cancer is becoming more and more common. A diagnosis of cancer is a nightmare that creates stress not only in the patient but also on every member of his or her family. The disease has such negative connotations that it is equated with death in most minds and associated fears, myths and misinformation only add to the trauma. As a professional medical worker in the field of palliation for the past four years, many experiences have helped me to discern certain patterns in individuals, their reactions and responses. Such observations have helped me to understand patients better and to plan the appropriate strategy to support them.

When a patient presents at an initial stage of the disease, there is hope of a cure. Faith in the doctor and the support of family members encourage the patient to fight this tough battle. But when the patient approaches us in the Palliative Care unit, there is no hope of a cure and he must be helped to accept the limits of medical science. At this critical stage, not only the patient but also his near and dear ones feel helpless and need someone that they can hold on to. They may resort to different defense mechanisms to deal with the unexpected news of terminal illness. Typically they go through several well-recognizable stages of psychological reaction before they can come to acceptance.

Anger…Fear…Denial…Bargaining…Analysis…Acceptance…

I have found that it is very important to encourage patients to vent their feelings and help them to analyze the situation they find themselves in. The topic of death is difficult to deal with and the thought of losing one's life is the ultimate fear. Where cancer and its treatment is concerned, patients experience fear related to Pain, Side effects of treatment, Process of dying, Loss of dignity, self esteem and physical independence and Leaving everything behind.

Most patients come to us with a mixture of emotions. For each the area of concern differs and it is necessary to help them find their individual solutions. To do so, one must understand their underlying compulsions such as Role in the family, Age, Burden of responsibility, Whether he is the sole bread earner, Image in society and current isolation. These factors play a vital role in deciding how he will face this difficult period in his life.

A person on his deathbed recognizes incomplete business that may now be impossible to finish. Anger results from this state of confusion and hopelessness and he may vent his feeling of frustration on the doctor, nurses and even primary caregivers such as family members. Warmth and support from a palliative counselor at this time can help him to adjust to the reality of the situation. It is the responsibility of the counselor to ensure that the patient does not regress into severe depression. When the patient runs through further stages of denial and extraneous factors to blame, the process of acceptance can finally begin. At this stage, the most important priority is to provide a peaceful, painless existence. Medical help to control symptoms and manage wounds as well as the warmth and assured support of the palliative care team helps to make the last days peaceful. The process of letting go begins and the endeavor becomes one of adding life to days rather than days to life, as was the aim until now.

To be successful in this role, the counselor should be A good listener, Accept the wishes of the patient, Compassionate, Good in verbal and non-verbal communication, Positive but not unrealistic.

These are the qualities a counselor needs to develop a good rapport with the patient based on trust. When realistic goals are set, anxiety is reduced. The importance of the quality of life rather than quantity of life must be emphasized. In this process, if the expression of negative feelings is required, they must be accepted. The patient must feel that their grief and sorrow is shared through appropriate communication, tender touch. Each person's unique reactions must be recognized and respected.

Medical science agrees that if possible, the patient should be informed about his prognosis. However, this information should not be forced on the patient who is not ready to hear it. Family members may try to hide the facts from the patient in order to protect him. As a counselor I have seen cases where all the parties involved are actually aware about the reality of the situation, but cannot discuss it amongst themselves. A counselor can play an important part in tactfully breaking such barriers and ensuring a meaningful dialogue.

Incipient suicidal tendencies must be identified and dealt with. A patient must be made to understand that death should not be chosen to provide an escape from an unpleasant life. The effect on the family members has to be highlighted.

The stress a caregiver undergoes generally goes unrecognized. Parents feel guilty when they spend time away from a sick child. Social pressure or their own conscience can force the caregiver to perform beyond their physical capability. It is very important for the counselor to address the problems of the caregiver, too. This allows them to render better care to the patient. The social worker must ensure that the immediate family members take proper respite and look after their own health.

Moving a patient to a hospice can also be a difficult decision. In India, sending a family member to a hospice is unacceptable. Social pressures ensure that all concerned are reluctant to put their own in someone else's care. Children feel that they have rejected their parents at a critical juncture. It is equally difficult to watch a child in pain, unable to do anything to help. In terminal cases, sometimes wounds require professional medical care to avoid further complications. If family members cannot be convinced to send the patient to a hospice, the best alternative is to train them on how to look after their loved one during their last stages. A home care team regularly visits the patient to educate the caregivers and helps improve quality of life.

From the point of view of the counselor, some cases can be extremely difficult to handle. They too are human beings with inbred social conditioning. They are subject to their own biases, preconceived notions, which may differ widely from the situations they are asked to counsel. As a counselor, I have interacted with numerous cases, which have helped me to realize the differences between reactions of individuals, arising from differences in their social, economic backgrounds and interpersonal relationships.

A pregnant woman was struggling to support her son who was undergoing treatment for leukemia. She had three daughters and her husband worked hard to pay for the treatment. But as soon as she delivered a healthy boy, funds suddenly dried up since there was now an heir for the family. The mother was helpless to fight on.

I have seen many cases where families are ready to sell their jewelry, house and other property to meet the expenditure involved for the treatment of a son, but rarely for a female child. The decision usually rests with the male members of the family, while the mother's duty is to nurse her child. Such a mother must be provided support and helped to accept the difficult fact.

The strength of relationships between family members can be tested during the last stages. I have witnessed the love of a brother who nursed his sister in spite of extreme poverty and lack of resources.

A daughter had disagreements with her in-laws and even her own husband in order to take care of her mother. She told me, "My parents always treated me on par with a son-giving me every opportunity to study so that today I have a comfortable lifestyle. It is therefore my duty to take care of them when they are unable to do so for themselves, otherwise how can we women demand equal rights?"

A retired army officer remains in my mind as the perfect example of a caring husband. He fought against death until the last, trying all kinds of alternative therapies, diets and consulting health care providers to ensure that his wife got all possible medical help.

On the other hand we also see cases where women have been turned out of their marital homes after being detected with cancer. Children wait for their father to die so that they can claim his job.

It is important for a counselor to remain neutral in such situations and counsel all concerned as best possible. I have been able to convince a husband to take back his wife by explaining to his family members that cancer is not a contagious disease as they had thought. Similarly, it is important to realize that financial difficulties force even loving children to behave unsympathetically.

To understand a problem completely, a counselor must avoid being judgmental. A multidisciplinary palliative care team consisting of doctor, nurse, medical social worker, which works together with clear goals and understanding of limitations is perhaps the best unit and can provide the optimum form of support to the terminally cancer patient.

This kind of experience also provides immense motivation and a means of self-growth to the palliative care worker. I personally feel a great deal of satisfaction at being able to make it easier to find the strength to face the impending loss and even after, to come to terms with the bereavement.