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The Patient's Right to Know
by Nani Ma

Nani Ma is the spiritual advisor of Ganga Prem Hospice. Living in a small ashram near to Uttarkashi, she is actively engaged in the day to day administration of the Hospice work. She works closely with the other Ganga Prem Hospice counsellors and medical team as well as interacts directly with patients and their families.

Despite the fact that it is the cancer patient who has the disease, the cancer patient who suffers and the cancer patient who undergoes the trials of surgery, chemotherapy and radiotherapy, when the cancer is no longer treatable, in some countries, including India, the prognosis is told to the family and not to the patient. The family then decides whether or not the patient should be told that his life expectancy is short and, more often than not, they decide, through affection and fear, that he should not be told and further request the oncologist not to disclose the facts to him or her.

Then begins a time of pain, turmoil and confusion for the patient as his body becomes weaker and he moves towards the death transition. The family and sometimes the doctors have entered into a well meaning but perhaps misguided agreement which is aimed at keeping up the patient's will to live and avoiding the pre-death depression to which they feel he might otherwise be subject. In fact the patient finds himself very much alone as he faces the deterioration of his physical body and the guilt feelings that arise when, despite his loved ones exhortations to get better, he knows very well that he is going downhill. He tries vainly to hide his weakness and pain in order to fulfill the apparent positive expectations of his family and friends.

The period before the death transition could be a special time for the terminally ill patient when he has an opportunity to resolve the social, emotional and spiritual issues of his life and prepare himself for what comes next. It is a time when he very much needs the loving support and co-operation of his near and dear ones to find his way comfortably towards the inevitable end. It is said that human beings can face the most terrible of situations when they can share their feelings, but the isolation of unshared experience is the most difficult emotion that anyone ever has to face.

As the disease progresses, many patients feel very distressed about how their dependents and close relatives will manage without them. They fight desperately to cling to life in order to not fail them. How much more comfortable it would be for them if their families faced the problems and fears alongside them and were able to reassure them by helping to find practical solutions to the impending difficulties. The most challenging problems become easier to manage when they are shared but with his loved ones skirting around the truth, the patient feels lonely and isolated and is afraid to broach the subject of his worries and fears with a family who on the surface does not seem to even be aware of what is happening to him.

Many patients have unfulfilled desires which have accumulated over the years and towards the end of life these desires crowd in upon the patient's mind as he lies confined to bed or the limits of his home. Sometimes the desires may be simple and easily fulfilled, sometimes he may want to meet with someone or visit some place nearby but, as he is being told by everyone that he will get better soon, he is hesitant to voice his longing and his feelings of urgency. If he does mention his wishes, he may be quickly reassured by his carers that he can do it when he is better and again he is left with the inner doubt as to whether he will actually ever be better and able to fulfill that desire. If the facts of his life expectancy were open between him and his family, it might well be possible that he could voice his yearnings and that his family and friends could arrange for some of them to be satisfied. Some desires may not be able to be fulfilled but to be able to discuss them openly with the family would be a tremendous help in assuaging the disappointments.

In the same way, when a terminally ill cancer patient finds his activities limited and his physical reach restricted, his mind may begin to dwell on guilt feelings over past deeds, resentment and anger. If he knew for certain that his life expectancy might be limited, he would almost surely want to try to resolve some of these issues. When a patient is severely limited by his physical weakness, this is a time when his loved ones can provide the practical means to help resolve his emotional problems. Even in cases where the problem cannot be resolved, a sympathetic and loving ear goes a long way in easing a troubled mind.

Last but not least are the issues surrounding the patient's spiritual life. Whilst this is entirely personal, the process of sharing feelings and practical support may play an important role in the patient's facing the death transition in a peaceful manner. The death transition involves leaving behind the physical body with all its connections and relationships. Many patients who clearly know that there is a possibility that they may leave the body soon like to strengthen their ties with a Higher Power. Such ties, whether new or old, give the patient a sense of support and refuge which they feel can help them cross over the boundary of death. Patients who have already firm beliefs in any particular religion may want to carry out practices that they feel will help them after death and in their continued spiritual journey. Others may not be following any particular spiritual path but the knowledge of their impending demise may awaken an interest in esoteric matters which explore life after death. Almost all people look forward to the future and want to know what is coming next. True holistic support will give the patient the opportunity to look into and follow his spiritual interests at this time, so that he does not regret his lack of a Higher Refuge when the moment comes to leave this life behind.

It is a paradox that, in a country like India, where the family support system is so strong, all round support is denied to the dying patient by the very people who most want to help him. The secrecy surrounding the terminal condition of the patient's illness actually reduces the possibility of fully nourishing holistic care, to a bare minimum of physical and medical support, leaving vast areas of mental, emotional and spiritual problems unattended.

Palliative care professionals who might have otherwise been able to add their expertise to the family support system find themselves severely compromised as they are inevitably drawn into the shortsighted collusion. The patient is again left unaided in the areas where he most needs help. Whilst superficially the reasons for this anomaly are to protect the patient from fear and depression and to encourage the will to live, it is often our own fear of death and change which we are not prepared to face. Instead of confronting the difficulty along with our loved one we recede into evasion of the issue and leave the patient to work his own way through his inner world of fear and uncertainty.

Perhaps the prevailing cultural system of hiding the prognosis from a patient needs to be re-examined by health care professionals as well as by social workers, who are both involved in advising families on how to proceed after prognosis. It is hoped that as the principles of palliative care and a holistic approach to supportive nursing are better understood, terminally ill patients can receive more meaningful support from all involved.

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