Under the pressure to live long

Life, in general, is taken for granted by a majority of people, to the extent of not cherishing it to its fullest. Disease, in general, and terminal illness in particular, sound like a fire alarm that warn us to look at life with renewed interest. All the unfinished and unaccomplished goals start guiding people through the illness. Reorientation of life towards longevity takes hold and objectivity is compromised. Suddenly life becomes more about longevity and only about longevity.
All measures and tools, in terms of treatment, are used without assessing their utility. As a hospice counselor, working closely with the people and families battling terminal illness, I personally feel that they all experience extreme loss of control over their otherwise smooth life with all its nitty-gritty.

Losing control over life and abrupt ending of lifespan can lead to many psychological and spiritual issues. In a hospice setup a patient’s and his or her family’s emotions are expected to undergo considerable change. These emotions are unique to every patient and his/her family. Under the scope of hospice care, these emotions are categorized under different headings like initial shock, denial, anger, bargaining and acceptance. The most interesting and expected coping mechanisms of these emotions are in a constant stage of fluidity.
As a psychologist working in a hospice, I have sometimes experienced a subtle resentment towards my profession by the families and patients. The most traditional complaint being ‘categorized’. If categorization of emotions is done with the intention of offering succor, it’s perceived as ‘being judged’. To transcend this opinion, it becomes downright essential to win their trust and confidence by being empathetic. Empathy makes us wonder why these families and people don’t become unruly in the face of terminal illness.Medical brotherhood is evolving minute by minute, ready to take up many challenges that evolve in parallel. The leeway of this evolution is to perpetuate life at any cost and in any eventuality. This medical growth has raised hopes for humanity to the extent of drawing them away from the thought of death being a natural event. This has given humanity, in general, a false sense of health security, wherein people turn reckless in their habits with the confidence of a solution from the medical fraternity.
If evolution and growth is expected to make life simpler, in reality, it’s the other way around as far as emotional well-being is concerned. Hospice patients in general become complex beings, alien to themselves and to their families. Their future looms as a larger-than-life image in front of them, spoiling their present. This is the transition point where they come under the pressure to live long, at any cost. Terminal illness is almost synonymous with death, which is accepted and denied at the same time. How much ever the proof points towards truth, the oasis of hope is so personal that it plays its own images in their minds. These images guide the path of their end days. We can look at the psychological issues from a humanitarian perspective or scientific perspective. Many times, our training as hospice counsellors shifts our focus from being a psychologist to a social worker. This is the mere effect of trying to make their life a quality filled life.

As we come from a death-denying society, we support terminal patients by giving a false sense of hope and a variety of futile alternatives. Our strength lies in postponing the thought of inevitable rather than facing it. That’s the origin of ‘denial’ for the terminally ill patients. The emotion of denial makes them resilient to face the reality with a sense of strength and facilitates the catching up on their life-backlogs. Helps in finding a new meaning in life to fight bravely. Denial keeps them close to normalcy and it acts like a shield between reality and hope. Denial has a very humorous way of making the psychologists lie to the patients, so they don’t die before their time, considering it to be a possibility. Our interactions with them have to be as per their knowledge of their disease. This can create a gap if not understood from the perspective of empathy. We,   counselors, being humans, will not be truthful all the time in our life, but we are tormented to tell the truth to these patients. Because it is expected of us to break the bad news eventually. This is when I also come under the pressure for a long life for the patients. “Why not let them think that they are going to be fine? They will have to face the inevitable later, anyway.” This can be explained scientifically as giving them time to process the information of their illness at their pace and also give us time’ to address the actual issue. As long the denial is not interfering with their decision making, addressing it can be postponed, to suit their convenience.
Denial has a way of fading away for the patient as the persistence of reality helps him/her realize that TRUTH is far from his own sense of reality. This transition point is very crucial for their emotional well-being as it marks the beginning of the course they are going to take.For the majority, denial converts to anger and it can cause emotional turbulence resulting in self harm, low self-esteem, damaged family relationships, refusal to move on and harming others. Psychology explains anger as a manifestation of fear and this anger manifests as spiritual pain and a fight with God. Anger at his/her own incapacity to overcome the situation, makes him/her fight harder for longevity by assigning blame on others like family, society, friends and God. Anger is a way to gain back control over his/her life. Interactions with these patients can connect us with the thoughts of our own mortality and experiencing the same anger is a possibility.

It’s difficult to sustain one’s life in a state of anger as it alters the sense of reality. A terminal patient cannot sustain there for a long time due to his physical issues. The truth slowly starts to seep in due to different reasons and makes him reorient his thoughts. At this moment he starts bargaining for different things like normalcy, longevity and a sense of new hope. The emotions at this transition are also set in the direction of prolongation of life. Life becomes more about achieving their goal of staying alive till a particular point of their near future. They look for a straw to hang on to, to swim the ocean of their illness. ‘If only’, is the thought that takes them through their day, and they are prepared to stretch their resources for the same. When their reasons for bargaining exhaust due to the impending reality, they finally start to acceptLiving long translates to blessings and is considered to be a socially acceptable the truth. This can weigh heavily on their emotions, for they realize it to be a point of no return. This is the point where they are not in denial, or angry or bargain. thought. As terminal illness is considered to be a penalty for unethical/unlawful deeds or a punishment from the Almighty, death by terminal illness is looked down upon, by the society. Living with the thoughts of impending death makes it harder for the patient to enjoy life. But my personal experience with these patients made me realize that psychological distress is caused not only by the thought of imminent death, but also by the way the society perceives their death. A socially accepted death usually causes relatively less emotional turmoil for the patient. The patients have the need to prove to their society and communities that their death is not for any wrong reasons. This is another major reason for them to succumb under the pressure of living a long life. Coming under the pressure to live long, many terminal patients compromise on many hard-earned aspects of their life like respect, dignity and quality. To face the knowledge of imminent death needs emotional strength and support and it cannot be forced upon the patient by anyone, just because our science advises so.
The complex emotions of the terminally ill and their choice to accept the inevitable truth decide whether they leave fighting for longevity or not. Either way it’s their choice.