Excerpt in English
Kindly translated by Anne Stottrup, psychologist and hospice volunteer, Geneva.
From ”Døden Nær – En Brugsbog i Nærvær omkring Døende” (Close to Death – How to be Around the Dying) by Liselotte Horneman Kragh. Copenhagen, Forlaget ALFA, 2011.
Just like there is no single way to be born, there is no single way to die. However, all of use follow to a certain extent the body’s ”rules of the game” when we are born and when we die. But, unlike birth, when everybody can see that now the baby has been born, a person can slide into death so imperceptibly and gradually that it might be difficult for those around the person to ascertain that now the person has died. There are, however, a number of stages in the process of dying that we may recognize when accompanying a dying person.
The most common symptoms of a person being close to dying are weakness and exhaustion. Most people will become so weak that they can do nothing, they can no longer walk, concentrate on a conversation or keep their eyes open. Most often they spend the hours sleeping or resting, and periods where they are awake get more and more infrequent. Appetite is at an absolute minimum, some people choose consciously not to eat in order not to supply the body with energy. It might be difficult for the relatives to no longer being able to care for the person by preparing food and feeding the person – food is one of the most profound ways of showing that one cares. One of the most obvious ways of showing that one is slowly retreating from the land of the living might be to stop eating. A relative should not worry that the person is starving or dying from thirst – the body is slowly closing down, and in the final stages, has no need for food or fluid.
Although nobody can say exactly when a person is going to die, there are certain signs indicating that death will most likely occur in the next few hours or days:
DIFFICULTIES SWALLOWING. When a person can no longer swallow, he or she does no longer need fluid – offer to clean the mouth with a damp cloth and moisture the lips with some lotion or balm.
Sometimes, MUCUS will develop in the mouth, the throat or the lungs, and when air passes this mucus, it produces a certain sound, a rattle. It does not necessarily mean that the dying person has difficulties breathing – and, often, by changing the position of the person onto his/her side, one may reduce this sound.
There is a CHANGE IN BREATHING – it becomes irregular, sometimes rapid, then slow, often with long intervals between inhaling and exhaling (Cheyne-Stokes breathing). Or the breathing can become very loud or very quiet, almost inaudible.
BODY TEMPERATURE MAY RISE WHILE, AT THE SAME TIME, HANDS AND FEET GROW COLD, sometimes blue in colour and with spots. THE COLD TRAVELS FROM THE FEET AND TOWARDS THE UPPER PART OF THE BODY. The nose becomes “pointed”. Some people get a very high temperature and sweat profusely, so care has to be taken to keep the person’s bed linen dry. Now and then, lips and nails will grow blue in colour. In general, these symptoms are not bothering the dying person, and no treatment is necessary.
TWITCHES – like the ones many of us experience just before we fall asleep – may occur. Nor are these symptoms bothersome or require treatment.
INCONTINENCE. As the muscles slowly cease to function, the person will lose control over urine and bowel movements. The urine may become dark with a pungent smell because the kidneys are no longer functioning.
SMELLS. As the body closes down, and the metabolism of breath, skin and bodily fluids change, unpleasant, very strong odours may occur. It might be an odour of acetone, or a sweet, pungent smell mixed with the odour of faeces - Fetor Hepaticus develops when the liver is no longer functioning well. A small table fan, an open window or perhaps incense sticks or perfumed oils may be helpful.
SHOUTS. It is not uncommon that the dying person appears to be shouting something just around the time of death. This is not so much a way of communicating as it is a sound originating deep in the body – not unlike the deep roars that a woman giving birth may produce: they are not necessarily expressions of pain, but rather “shouts of working” like when a weightlifter lifts something heavy.
SIGNS OF BEING RESTLESS, UPSET, WORRIED. The dying person grasps at the duvet cover with her/his hands, tries perhaps to everybody’s astonishment to get out of bed. The person seems to have difficulty finding a proper resting position, perhaps because of pain or difficulties breathing.
COMMUNICATION BECOMES GRADUALLY MORE DIFFICULT. The dying person appears to be in her/his own world and pays no attention to what is happening in the room. It is as if they are not listening, and their eyes may appear glassy and vacant. Sometimes, the eyes will be partially closed, whether the person is awake or asleep. However, whether a person is too weak to talk or has become unconscious, he/she can still hear. The sense of hearing is the last one to go.
The most obvious sign of death is ABSENCE OF BREATHING. However, if the breathing has been very weak or very irregular for some time, it might be difficult for the relatives to be sure that death is now a reality. Sometimes the final breath sounds like a small sigh. If the dying person is conscious, one may see a small smile or glance signaling good-bye, or see how the eyes lose their focus and close. IF THE PERSON IS SLEEPING OR UNCONSCIOUS IT MIGHT BE VERY DIFFICULT EXACTLY TO PINPOINT THE MOMENT OF DEATH. However, it often seems to be obvious very quickly that the person has “left” the body – the muscles of the face soften, the lower part of the jaw may fall down, and the eyes become less clear. If the person has been in great pain, it will often appear as if the face changes into a serene and relaxed expression after death.
After 2-6 hours, the BODY GRADUALLY BECOMES RIGID (rigor mortis lasts 24-84 hours), so if the relatives want to arrange the body in a certain way, this has to be done rather quickly, e.g. if the deceased wore dentures, these have to be fixed (possibly with some adhesive material as the gums will have changed over the last few weeks), the eyes must be closed (if they do not stay closed, small wads of cotton wool may be placed over the eye lids), if the lower part of the jaw has fallen down and the mouth is open, a folded towel may be placed between chin and chest – all these remedies are, of course, to be removed once the body has gone completely rigid. The blood will gather in the parts of the body closest to the bed, forming big dark patches (livor mortis), most pronounced 8-12 hours after death. The body will lose its body heat (algor mortis) and get colder and colder – probably one of the most significant and alienating characteristic of a dead body is the absolute absence of body heat.
THE RESTLESS AND UPSET PHASE can be difficult. In between periods of calmly resting, the dying person may suddenly appear restless and in great pain. Some people find the strength to get out of bed, falling and hurting themselves. Perhaps the restlessness and upset is partly due to the dying person being unable to make him/herself understood. You may ask “Please tell me what is happening” , or “You seem to behave differently today – how may I help”. The dying may communicate in ways that seem incoherent – ways, however, that may make sense if you try and perceive the communication in symbolic language, images, since the dying person is having experiences that only with difficulty may be expressed in traditional language. And if you just listen and try to understand what the dying person is saying, you will often be able to find the meaning behind the words. Perhaps she will say that she needs to “find her passport and buy tickets”, or she is upset because she “cannot find the road map” in order to find the way home. Or that something or other has to be organized so that the person can “go home/go away”, or that now he would like to “lie down and rest” (especially when said by a person who has been in bed for many weeks, it might be easy to dismiss this as nonsense). All this may be images referring to death as a road leading somewhere – a metaphor often used by dying people to tell the relatives that now time has come for the person to die. And that out of care for the living, it is very important for the dying person to be sure: “Do they understand? Are my relatives ready? Will they be alright after I’m gone?”
TO PROVIDE INFORMATION AND KEEP CALM. The dying person might ask for straight forward information about the physical process of dying. Short, simple and clear information may prevent a lot of anxiety, and for the relatives to acknowledge that “yes, that is where we are now”. And to stay progressively more calm as the anxiety level of the dying person rises, may be a good thing – if you start anxiously reacting to each and every movement, the panic in the room will greatly intensify. Low lights, perhaps quiet music, soft touch and warm words – or just silence – may often help to recreate a peaceful atmosphere for the dying person.
THE IRREGULAR BREATHING. It might seem unbearable to sit for long periods, listening to a person breathing, with long intervals of no breathing in between. The relatives often find it impossible to sit with a dying person, when he/she is calmed by morphine, breathing, not breathing. It produces a type of breathing that often stops for 30 or 60 seconds at a time - the relative gets up, a bit frightened, closes his book, puts down his coffee cup, bends over the silent body –
…..”has she finally…..? But no, gradually the whole thing starts over again, bubbling, wheezing, ever louder than before. It may go on for hours or days, but already after having attended the first night of exhausting performance, the relatives often beg the doctor to end it. However understandable this request is, it arises purely out of this fact: it is unbearable to witness, it is unbearable to sit at such a death bed. However, this has nothing to do with the dying person ….he left a long time ago” (from the book: “Døden skal du lide” by Bert Kreizer, Forlaget BORGEN, 1996.
AS IF THE PERSON IS REHEARSING HOW TO DIE. Now and then it seems as if the person is “rehearsing how to die”, how to leave his/her body so to speak. A hospice nurse:
One night I talked with the wife of a dying man. She had spent many hours by her husband’s bed side, who was, no doubt, dying. She told me: “It is unbelievable. Sometimes I think that he has left his body. The colour of his skin changes, I can barely hear his breathing or feel his heart beat. And then, suddenly, it is as if he has returned to his body. His cheeks regain their colour, his breathing becomes steady and strong, and I can feel his heart beating. I wish he could tell me what is happening……” This man spent many hours “coming and going”. I remember how his wife stayed with him. She told him to take all the time he needed, and assured him that he would not be alone. It was a long process for him to leave his body eventually, but she kept her promise and stayed with him until the very last moment” (from the book: “The True Work of Dying. A Practical and Compassionate Guide to Easing the Dying Process” by Jan Selliken Bernard and Miriam Schneider, Avon Books, NY, 1996, p. 78
Translated by Anne Stottrup