Before 4 October, 2018 Maria Clara Restrepo E.
Supporting the dying process of a terminal patient is possible with a little passion, love and understanding.
Medical Advisor Héctor Echeverri Tobón – Anesthesiologist and expert in palliative care
During the last moments of their lives, the terminally ill often wish to be surrounded by their loved ones, as this company helps ease their pain and improve their wellbeing. But as the anesthesiologist and palliative care specialist, Héctor Echeverri Tobón, explains, “It is strange because families often act as if the patient’s disease was contagious. In an attempt to escape this difficult time – when it is most necessary to address and discuss the reality of the ensuing death – they try to spend the least time possible with them, leaving them feeling isolated.”
This behavior is justified by the enormous gap between life and death that our western culture has created, one that has generally led to few wanting to talk about death, to the point in which it becomes invisible. It is important to address the issue through different scenarios, however, so that when it occurs without warning, everyone is prepared to welcome it, and deal with the ensuing grief.
“The impressive emotional impact that hits when we discover that death is near, triggers a series of physical and mental processes not just in the patient but in the loved ones that surround the patient. When you can accept death, grief comes much easier. The easiest pain to manage is physical pain, but the emotional aspects of pain are more difficult to heal,” Dr. Echeverri states.
When there are not enough resources for there to be an interdisciplinary team of specialists that can provide support for this process through palliative care, family members will be needed that are willing to learn about how to deal with this phase of life that the individual will experience. This can help prevent mistakes from affecting the unity of the family and prevent bringing unnecessary suffering upon the patient. All you need to provide this support is love and understanding, the best form of support there is.
Reaching an agreement
Choose the family member who will act as the mediator between the patient and their loved ones. If there is a healthcare professional in the family, this person can help guide the process.
The terminal patient is not in the conditions to serve as the receptionist in a waiting room, so it is important to find a place where the patient feels comfortable and safe. At home, patients can be more comfortable and can more freely express how they feel.
If the patient is at home, place them in the room closest to the bathroom; put the bed in the center of the room to allow entry and mobility on both sides; ideally, choose a room that has a window to establish a connection with the outdoors; and make sure plenty of liquids are available, that they have access to a bell, and that chairs are set out for visitors. Use something to freshen the air and try to obtain the same fragrance that the person used throughout their entire life.
Allow the individual to choose the person who will change their diapers and bathe them.
The suggestion is for the family itself to establish shifts for their care.
The stages of a terminally ill patient
These phases* do not always occur in the same order, sometimes the patient spends more time on one or reverts back to another. In their own way, the family also experiences this same process. Normally, phases progress in this order: denial, anger, bargaining, depression and acceptance.
When they first hear the news, patients and families often have the same reactions: “It can’t be,” “There must be a mistake,” or “Why me?” This is a useful defense mechanism that allows the mind to gradually adjust and assimilate to reality. It is critical for the person that is ill and the person supporting them to talk openly about the disease, and how serious it is, truthfully; and instead of asking “Why?” ask “What for?”
This phase is brief. Here, the patient tries to negotiate with the whole world such as doctors or priests, in order to obtain a second opportunity – bargaining – in exchange for making different promises. The most common form of bargaining includes making a radical life change: becoming more religious, donating to the poor or donating their body to science – all of this in exchange for more time to attend the wedding of their daughter or the birth of their grandchild, for example. Generally, these promises are secret or are shared with people who are very close.
While the patient can direct their anger at fate, more commonly, they will direct it towards family members, nurses and doctors. They can become aggressive because for them, everything has come to an abrupt stop (work, future plans, life goals, vacations, and family). It is important for the person supporting them to put themselves in the shoes of their loved one so that their responses and attitudes do not lead to arguments. This person should learn to listen to the patient and even accept their anger, even if it is unjust or irrational, as this will bring relief to the patient and help them better accept the process.
If the patient has had time and support to experience all these phases, they will finally reach this phase, which is also the most difficult for the patient and their family. In this phase, they are no longer angry or depressed about their future. They will most likely have expressed how they feel, shown their detachment and will be prepared for their death. During this part of the process, the patient is almost indifferent and devoid of emotions; it is as if their pain has disappeared and silence has become their way of communicating. The people supporting them will need to be available at this phase to provide them peace of mind and encourage them to let go.
Reactive: After dealing with hospitals, surgeries, chemotherapies or radiation therapies, the patient becomes weak and can no longer deny they have this condition. Anger and rage are replaced by a feeling of physical loss (amputations, changes in weight), psychological loss (losing independence), and financial loss (selling their belongings to be able to cover the cost of the treatment, for example). At this stage, the family must implement strategies to raise their spirits, encourage optimism and help them to keep fighting.
Preparatory: This is related to the pain that the terminally ill patient goes through in preparation for their death. It is rooted in the imminent loss of all that the person loves (emotionally).
Family plays an important role here because it can either make things easier or more complicated. Only the patient who has overcome their fears and anxieties will find acceptance and die in peace. The person sleeps for long periods of time and is in an evasive state of sleep to relieve pain. Cycles come to an end.
* These phases are described in further detail in the book Morir sin miedo y sin dolor (“Dying without fear and pain”) by Héctor Fabio Echeverri.