When we talk about the "needs of the sick person" we need to enter a dimension of need not only at the individual level but also at the level of the systems in which the sick person is inserted and therefore the needs of a family, a network of friends, a healing network etc. We therefore believe it is important to take into consideration in this article the needs of the cancer patient's family in the end of life phase.
We imagine the family as an organized structure characterized by the coordination of different structures (the components) with its own identity and specificities. Like all systems, the family also survives thanks to the maintenance of its homeostatic balance and as such undergoes the changes of each of its individual components. The illness of one of the family members threatens his equilibrium and the family system will put in place the defensive reactions towards the disease threat. But what can be the needs and reactions of a family that undergoes one of the most demanding phases of the care path of their loved one, or the end of life phase?
Unfortunately, sometimes there comes that moment when the patient and his family hear those terrifying words: "the progression is clearly visible ... we hoped and we did everything we could to prevent it from happening ..." Leaving the room confusion, daze, fears, despair , anger accompany the people involved in this sentence.
Often for the patient it is only a confirmation of his forebodings .. because patients are sometimes the first to realize their state, even without undergoing examinations. In that circumstance it is said aloud!
Cancer upsets everything:
- all daily life is centered on the disease: the days are built around the sick family member. The dialogues, the relationships almost constantly speak of illness.
- planning changes: the family can no longer think long-term but their choices are linked to the here and now.
- social interactions change: fewer social exchanges both because more assistance must be provided to the patient, and because the desire for contact with others is lower due to the influence of the diagnosis on mood.
- The disease affects the economic balance: tickets, medications, further specialist medical visits requested by the patient, travel and accommodation expenses. Work commitment decreases if not forced to stop it altogether.
Everyone has needs and every need is important, you do not always have the opportunity or the courage to grasp them or simply do not authorize yourself to do so. At this stage, everyone's needs are different from those that arise in the other stages of the disease. Often they add up or intertwine, other times they are veiled or confused and then leave room for emotional experiences that constantly change.
Family members hardly surrender to the sentence. The pain leads them to react by swinging between exhibiting massive anger at the operators because they may not have done enough !, trying desperately to instill optimism in their loved one, come on! On! We do not Surrend! Let's see .. in the meantime, let's continue the treatments !, look for intimate moments to despair.
In these cases the operator cannot explain, he must not justify, he must not try to make people understood .. he can only welcome, act as a container, understand, accompany ...
What can you do?
Indulge in pain so that you can channel despair into it: the need to despair
Often family members fight despair by all means as they fear not to hold up or to collapse in the most delicate moment. Yet the more despair is fought, the more it takes up space inside and out… people who cry in secret, who make up all the excuses to justify red eyes or even people who run away. It is too difficult to face the death of your loved one directly, escaping is the only way out!
- What can we suggest then to a family member devastated by the sentence? Well! in these cases the most therapeutic suggestion is precisely to indulge in the moments of pain, go through them, live up to the last tear. Every day they should devote space to the need to despair, armed with pen and paper describe their despair, worry, anger .. straight away .. without rereading! because throwing out can only help them to dedicate themselves in the most appropriate way to their loved one. The great Pessoa in one of his verses wrote: "I write to lower the fever of feeling". No phrase turns out to be magical or comforting enough to soothe the pain, but we can use the pain itself as a vehicle to find strength, the one none of us think we have: accompanying loved ones in the last weeks of life.
Knowing to orient yourself: the need to know
- Not knowing what lies ahead for a person is one of the hardest things to manage. Generally knowing creates a greater illusion of control, of management. It avoids making you feel lost and allows you to face fears differently.
The family member should subsequently be informed about what will happen: how to move from now on, what treatments he will do for the moment, what symptoms to consider alarming and how to control them, how to activate palliative care (treatments aimed at alleviating suffering intended not only as physical pain, but also psychological, social, spiritual), the possibility of the hospice (residential health facility dedicated to the hospitalization of patients in an advanced stage with rapid evolution of oncological and non-oncological disease), to understand what treatments will be administered and to be reassured of the the fact that the family member will not suffer, knowing who to contact, addresses of the structures. It is difficult to collect this information but necessary as it guides us in the darkness of a path such as the end of life phase.
Choosing time to save time: the need to take time
- Family members can take the time to understand what are also the priorities to be organized .. those in those most irritating moments ... paperwork to be fixed, life to be reorganized, things to finish. The person in these phases would like to be able to put himself on standby .. stop everything .. do not waste time on annoying things! However, this should only be granted for a short time after which they should be guided to resume that tiring path. It may be helpful to list things that need to be sorted out in order of importance. Pinning up already means getting organized… already having an order will allow you to stay on course, not to get lost in this painful chaos. We cannot establish how much time you have to be able to use it well or to go into action ... it is important to know that they are there and you can start from the smallest and least demanding of the things listed.
"If he expected to know before speaking he would never open his mouth”HF Amiel: the need to speak
Facing a speech, the simplest, exchanging two lines, saying I love you may seem like the hardest thing to do. Words freeze, run away and think and rethink and then erase them before uttering them. Yet the need to speak, to say or to reiterate, to clarify or to apologize is one of the strongest but most difficult needs to satisfy. We are afraid of suffering or making people suffer, we fear the questions or the answers to be given.
"One cannot not communicate" reminds us of the axiom of communication (Watzlawick, P., Beavin, JH, Jackson, DD (1967). Pragmatics of human communication. Rome: Astrolabe, 1971).
How to make an instrument of it?
Saying something doesn't mean being prepared. It cannot be in these cases! Make feel! With words or with behavior! It does not matter to create a space for "confession" but it is important to communicate our affections, our esteem, our gratitude .. if I could have told him ... he is an uncomfortable companion for our life. You can create opportunities for sharing, you can read books, comment on films or listen to music. We can remember together… Doing something together is already talking!
Pray not to get lost: the need for faith
We have often had to answer a question that patients and family members ask us:
"You doctor, you believe in God"?
It happens to find yourself immersed in anger and take it out on yourself for having lost all that time in believing in the existence of the good that protects, of the God who saves and that the good always have a special place somewhere. It also happens, in the most difficult moments, to have found a place, a small space that supports when everything around collapses. For many people this refuge is prayer and faith. And we, in any case, answer like this:
If praying is important to you and makes you feel better, keep doing it! It is not important to have the certainty of the existence or not of God ... sometimes we dialogue with ourselves, with friends or enemies and we believe it can also be done with one's God for those who have it.
“Those who suffer from cancer want the curtain of commiseration that surrounds them to be broken, they do not accept the fearful exorcism of those who never want to use the word 'tumor' and fall back on 'the ugly evil'; does not ask for mercy, and not even the unbearable hypocrisy of those who say "courage" and secretly conjure them, they just want the understanding of a common feeling because the tumor is experienced - by those who have it - as a "social" disease, something that does not belong only to the patient but is part of a wider psychological and emotional dimension, which also goes beyond the family circle. " (Mimmo Candito, in La Stampa, 2015)
Dr. Eleonora Campolmi (Official Psychotherapist of the Strategic Therapy Center)
Dr. Lindita Prend, (Official Psychotherapist of the Strategic Therapy Center)
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