It is hard to convince anyone that death is an experience that makes a beneficial contribution to our lives. This is a topic often overlooked in both psychotherapeutic work and in medical practice. However, caring for the elderly, the ill or the dying is an area where the subject of death simply cannot be avoided. Although we usually prefer not to think about it, death is an extremely important part of our lives.
Seneca wrote: “He who would teach people to die would teach them to live”. The experiences of numerous therapists indicate that, for people who have begun to recognise their mortality and accept the inevitability of death, life has taken on greater expression, a different perspective and authenticity with themselves and others.
There is a certain benefit that comes from awareness, a limited time of existence. After all, people with little time left tend to pay more attention to living in the ‘here and now’ instead of planning their lives in the short and long term, i.e. living more intensely in the present moment, sorting out their values, and some, although this may come as a surprise, live happier lives than before.
Whether a person is suffering from a terminal illness or is medically healthy, in order to obtain satisfaction from their life, they need to accept death. This involves not only an intellectual understanding of the fact of passing, but also a readiness to emotionally experience the feelings that the death of others and our own passing evokes in us.
How do we usually cope with our mortality?
A person who becomes aware of the impending death or the possibility of it, usually needs to experience several stages before directly confronting their illness and death. Such reactions, such as consulting multiple doctors with the same speciality or hiding the truth from the family, are natural expressions of denial and repressing the disease. Facts about the reality of the situation that reach consciousness often provoke anger. It can stem from the question “Why is this happening to me?”. This is a special time when those in contact with the patient should understand their behaviour and avoid treating such emotions as a personal attack. This topic will be further developed below.
The next stage is to negotiate, e.g., with God, an improvement in health or an extension of life in return for some specific deeds. Next, a state of depression may emerge, which manifests itself by ruminating on the loss of one’s health, former life, etc. With time comes a slow loss of interest in the outside world. This is evident when the patient wishes to meet fewer and fewer people and is less and less interested in the affairs of others. He or she is slowly experiencing what is known as preparatory grief. If, during this time, those around them accept the process of passing away, the dying person will be able to pass away in peace and acceptance.
Informing the patient
Dealing with unexpected dying usually starts with receiving information about the condition. The communication of a serious illness should only take place once the diagnosis has been confirmed. Prior communication of suspicions should be given with a clear emphasis that these are only hypotheses. It is important that, following the diagnosis, the patient is informed of what treatment options are available. Elizabeth Kübler-Ross, the late medical doctor and psychiatrist, an internationally renowned authority in the area of death and dying, emphasised that people should not be confronted with impending death when they are not ready for it. Initially, it may be safer, for example, to communicate that a person is seriously ill. In time, when the patient is ready, you can talk to them about death and dying.
Questions that cannot be answered
Even if we have a professional role in patient care, it is beneficial to get rid of the expectation that we will be able to answer all the questions of sick people. If a patient asks us a question about the reason for their illness, the carer has every right to give “I don’t know” as an answer. It may be more important to see what lies behind the question. This requires a willingness to listen to the patient and let the patient guide the conversation further.
Usually, for people who come into contact with a dying person, a big difficulty is the conversation about death itself. It often stems from the fear that we will not be able to console the ill person. We rarely realise that, in this situation, the very fact of being heard by another human being can be consoling. Elizabeth Kübler-Ross was of the opinion that, for a dying patient, simply trying to build a positive relationship with them is a better support than financial assistance or ongoing support related to where they live. Probably the most effective in helping the dying (by bringing mental relief and greater peace of mind) will be those of us who find the strength and willingness to listen to the thoughts and feelings of the ill person, while believing that the dying person does not have to suffer alone.
A major challenge for both professionals and patients’ families is to accept the feelings the patients express. A patient who demonstrates anger may be perceived as a person who breaks the prevailing norms. If he or she expresses sadness and cries, for example, it is also difficult for those around him to accept this, because we ourselves begin to feel uncomfortable. It will be helpful for both the patient and us if we learn to interpret the emotions experienced and expressed by the ill person as an expression of current needs. If a patient is crying, perhaps their need is to be noticed or to express that something has just moved them. I have repeatedly heard spontaneous comments such as:
“Don’t cry”, “You mustn’t cry, otherwise…”. Our role is to refrain from such comments and to respond to the needs behind them. Crying, for example, can mean that the patient has been deeply moved by seeing a family member, or feels lonely and needs a moment of attention. Acceptance of such patient experiences can seem threatening, as we may fear losing our sense of professionalism or feeling an overpowering sense of guilt for not being able to help the patient. The trick here is to accept this state.
It may also happen that the ill person starts to show us their wounds or the body altered by the disease. This way, they probably want to show their suffering and the seriousness of their illness. It is worth interpreting this situation as a request for compassion and to show this compassion in this situation.
I devoted the previous article to the feelings that arise in ourselves when we confront the dying of others. When talking to a person who is seriously ill, it is useful to be ready and able to talk about one’s own experiences, this enables one to be in authentic contact. Speaking honestly about feelings also applies to the negative ones. Telling the patient which of their behaviours make us feel irritated, for example, can be an opportunity to find a way to communicate further. It also provides an opportunity to avoid a situation in which the entire staff of the facility, and perhaps also the patients, are hostile towards the patient. It is worth reckoning here that the patient may in effect also share their own feelings in response to what they hear from us. It is good to consider this as natural and potentially bringing relief to the patient.
If a patient brings up the subject of death, it means that it is important to them at that moment and this should be respected. Whether the person is talking about pain, fear of dying or funeral plans, our role is to take it seriously and show them permission to talk about it. Even if, from our perspective, it is far too early to plan funeral issues.
How to make contact?
If, as carers, we happen to come into contact with a dying patient we don’t know, we can simply ask if they would like to talk to us for a while? If he or she expresses readiness, ask what he or she needs, if there is anything we can do for him or her, etc. For some patients, the need will be to hold their hand, someone else may ask to bring someone important or to leave them alone.
There are some people who, despite the fact that they are medically terminally ill, claim to have been healed by a miracle. The helper has a duty to respect the patient’s need to believe that a miracle has happened, even if medically it is not true. It is advisable here to accept that the patient interprets their situation in this way and to create opportunities for them to share his experiences, whether they concern a diagnosed terminal illness or their belief in a miraculous cure.
The experience of the helper
If, as a result of contact with dying patients, we ourselves are experiencing growing strong emotions, it is worth taking care to find a place where we can express our experiences. It doesn’t matter if it’s crying, swearing, a moment of silence or a conversation with a trusted colleague.
Anyone who comes into contact with people who are in difficult situations should be able to express their experiences. So-called retreat rooms are best used for this purpose, but if there is no such place, it can simply be a toilet. A key attitude is that the helper expresses his or her experiences and does not fear that this will make him or her more vulnerable to suffering in the future. On the contrary, it provides opportunities to deal with dying people more effectively and increases the possibility of effectively helping the ill.
Resentment directed towards us
I have already mentioned above that the situation when a sick patient reacts with resentment towards a person who is trying to help requires the professional to understand such reactions of the patient as resulting from the difficult situation the patient is in. Such reactions do not tell anything directly about us, but about the patient’s current experience. What is also helpful in such contact is to avoid communication that could make the patient feel guilty. For example, to a person who complains about having to urinate in a nappy, do not respond that there are also patients on the ward who need to be catheterised. Rather, let us say that we are aware of the patient’s anger and jealousy towards those who can use the toilet. If we add that if we were in that situation, we would also be angry, this can lead to an expression of anger that gives the patient some sense of relief. This will be free from feelings of inferiority, guilt or the feeling that the patient’s experiences are being belittled. This approach, in retrospect, results in a better well-being of the patients and in nurses being bothered less frequently if there is no clear need.
The course of coping
Like a mantra, I try to emphasise the fact that, despite a certain ordering of the phases of coping with illness or dying (denial, anger, negotiation, depression, acceptance), many patients may experience several phases in parallel or go through them in different order. The role of helpers is to remain aware that when, for example, a person who has come to terms with his or her dying begins to experience a different phase again, this may be the result of mistreating the patient. This can be led, for example, by family who, by their behaviour, induce guilt in the patient for ‘leaving them behind’.
If a patient regresses from a different phase of coping to the previous one, this is probably the result of the natural progression of the crisis as a phased phenomenon rather than a linear one (where successive elements run one after the other).
If a patient makes a comment that is surprising to us for any reason, e.g.
“I wish to die today already”, I suggest you try to normalise this reaction by saying, for example.
“Everyone feels this way sometimes” and try to find out what this is due to. The most important thing is not to depreciate the patient’s experience by saying, for example, “Please don’t say such things. You have to enjoy every day” or “Don’t blaspheme”.
It seems to be extremely difficult for helpers to deal with a patient who does not want to do anything and, for example, get out of bed and who insists that there is no point in doing so, because he or she is dying. It is valuable here to distinguish whether such reactions are the result of pathological depression (a person too soon deprived of hope no longer wants to be a burden on others) or natural separation from the outside world. In pathological depression, a psychiatric consultation and our willingness to listen to a patient talking about their feelings of meaninglessness and hopelessness can be helpful. On the other hand, if the patients separate themselves from their environment, our role is to respect this, because it is a moment in which they seek resources and peace within themselves.
Unfortunately, typical verbal communication cannot be established with every patient. This applies to patients who are difficult to contact, e.g. due to a stroke, tracheotomy or connection to a life support device. It is important that the helper tries to establish contact, e.g., by communicating through eye contact. There may be value in simply spending a little extra time with the patient and trying to interpret and respond to the signals they send.
Regardless of how the patient coped with the illness and dying, it is extremely important to be present in the dying process. Participating in this process reduces loneliness:
one of the greatest fears of dying people. For those who live on, it also gives them a chance to cope with their mortality, makes it easier to experience bereavement later, and expresses what we sometimes forget: for each of us, the greatest gift we have is the present moment.
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Montaigne, Essays, p. 55.