Signs that death is approaching

This article describes what tends to change in the last weeks, days and hours of life, what those changes mean, and what helps the people around the bed. It is written for families, not for clinicians. It does not sanitise. The dying body is doing one of the most ordinary things any living body does, and watching it is hard. Knowing roughly what to expect makes it less frightening.

The last weeks

The last weeks are usually slower and quieter than the days that follow. The person sleeps more — sometimes most of the day. They get tired from things that used to be easy: a short walk to the kitchen, a phone call, half a meal. Conversations become shorter. The world contracts toward the bed and the room.

Appetite falls. The person eats less, and then eats almost nothing. Many families find this the hardest change to accept, because feeding someone is one of the oldest ways of caring. In the dying phase, the body no longer needs the calories it once did, and forcing food or fluids tends to cause discomfort rather than strength. The Dutch palliative guideline (Pallialine, Richtlijn Stervensfase) is consistent on this point: in the last phase, eating and drinking are guided by what the patient still wants, not by what carers think they should have.

There may be sudden short surges of energy — a clearer afternoon, a longer conversation, a request for a favourite dish. Families sometimes read this as recovery. It is more often a brief plateau in a longer decline. It is still real; the conversation that happens then is still meaningful.

Withdrawal is also normal. The person turns inward — less interested in the news, the visitors, the household. This is not depression in the clinical sense and is not, in most cases, something to fix. It is part of the slow disengagement that the dying phase makes room for.

The last days

In the last days, the changes become more visible.

Breathing changes. The rhythm becomes irregular. There are pauses, then deeper breaths, then pauses again. This pattern is called Cheyne-Stokes ademhaling (Cheyne-Stokes breathing), and is a recognised feature of the dying phase. To a family member it can sound alarming — the long pauses are particularly hard — but it is rarely a sign of distress to the person experiencing it.

Skin changes. The skin grows pale. The hands, feet and knees become cool, sometimes mottled with a blue-purple pattern. This is the body slowing the circulation to the limbs and concentrating it in the core organs. The Dutch term is marmering (mottling).

Eating and drinking stop. The person no longer asks for food or water. The mouth becomes dry. Small mouth care — moistening the lips, a damp swab on the tongue, a little lip balm — is more comfortable than trying to give fluids the body can no longer process. Wijkverpleegkundigen (district nurses) and VPTZ volunteers are trained to do this and can show families how.

Restlessness or confusion. Some people become restless in the last days — picking at the blankets, trying to get out of bed, speaking in fragments. This is sometimes called terminal restlessness or terminal delirium. It can have many causes (pain, full bladder, medication, the dying process itself) and is one of the symptoms a huisarts (general practitioner) or hospice team can address. It does not mean the person is suffering in the way the movements suggest.

Visions and conversations the family cannot follow. People in the last days sometimes speak to relatives who died long ago, or describe places the family cannot see. In Dutch palliative literature this is described matter-of-factly as part of the dying experience, not as something that has to be corrected.

Terminal lucidity. Occasionally — and unpredictably — a person who has been confused or barely responsive becomes clear and present for a short period: recognises people, says something they wanted to say, and then returns to the previous state. This is sometimes called terminal lucidity. It is not a sign of recovery. It is a window, sometimes used, sometimes simply observed.

Withdrawal deepens. The person responds less. Eyes close more. The voice fades. The world has become very small — the bed, the room, a few people, sometimes only one.

The last hours

In the last hours, the body works through a small number of recognisable changes.

Breathing slows and changes again. The pauses get longer. Some breaths are shallow, some unexpectedly deep. The pattern can keep shifting up to the end.

The death rattle. As the person becomes too weak to clear secretions from the back of the throat, breathing can produce a rattling or gurgling sound. The Dutch term is reutelen (death rattle). It is one of the sounds families remember most, and one of the most frightening. The Dutch palliative guidance is unambiguous: reutelen is not a sign of suffocation or distress to the dying person. Suctioning rarely helps and can make things harder. Repositioning the head and shoulders sometimes quiets it. Medications that dry secretions can be considered by the treating doctor in some cases.

The skin pales further. The lips and nail beds may take on a grey or bluish tone. The hands and feet are cold. The mottling extends.

The jaw relaxes. The mouth may fall slightly open. The face softens.

Eyes. The eyes may be partially open, with a fixed or unfocused gaze. This is not a sign of awareness or its absence; it is the muscles letting go.

Hearing. The current understanding in palliative care, reflected in VPTZ training and KNMG (Royal Dutch Medical Association) guidance on the terminale fase, is that hearing tends to be one of the last senses to fade. Families are encouraged to keep speaking to the person — calmly, by name, with whatever they want to say — even when there is no visible response.

The last breath itself is often quieter than families expect. There may be a sigh, a small movement, then stillness. Some people die surrounded by everyone they love. Others, in a way that staff and volunteers see often, seem to wait until the room is briefly empty. Neither pattern is a verdict on the family.

What helps the family

There is no script. There are a few things that, in the experience of Dutch hospice teams and VPTZ volunteers, tend to make the hours easier.

• Be there, in whatever form is available. Sit. Hold a hand. Sing or read something. Silence is also a form of presence.
• Keep talking to the person, not about them. Speak to them by name. Avoid discussing them in the third person while you are in the room.
• Do not panic when the breathing changes. The pauses, the rattle, the cold hands — these are part of how the body finishes. They are not the same as suffering. If you are not sure, call the huisarts or the hospice team.
• Permit them to go. Some families find that saying out loud "you can go, we will be all right" releases something. There is no obligation to do this. There is also no harm.
• Use the support that exists. A VPTZ volunteer can sit through the night so the family can sleep. The huisarts can be called for symptom management at any hour. Hospice teams expect to be called. The mantelzorger does not have to be alone.
• Decide in advance what you will do at the moment of death. Whom to call. Whether to keep the body at home for some hours, in line with the wishes recorded earlier. There is more time than people think — there is no rush in the first hours after a death at home.

In the Personal Portal you record the wishes that govern this period — the preferred place, who should be in the room, what the family should do in the first hours after death — so the people present do not have to guess.

In the app

In the app you record what you want the last days to look like — where, with whom, with what music or silence — and what the family should do in the first hours afterwards. The wish lives where the people who will need it can find it.

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Sources

1. Pallialine / IKNL — Richtlijn Stervensfase (clinical guideline on the dying phase). https://palliaweb.nl
2. VPTZ Nederland — volunteer training materials on care in the last phase of life. https://www.vptz.nl
3. KNMG — guidance on care in the terminale fase and physician communication with families. https://www.knmg.nl