What does end-of-life care mean?

End-of-life care is the care of a dying person when curative treatment has been discontinued. The goal is a pain-free, dignified, and safe death. End-of-life care includes pain management, symptom relief, emotional and spiritual support, and supporting the family. It can be provided in a hospital, hospice, or at home.

How do I recognise the signs of the final days?

Typical signs include increasing fatigue and drowsiness, loss of appetite and thirst, breathing becoming irregular, limbs becoming cool and bluish, and declining consciousness. These are a natural part of the dying process and generally do not cause suffering to the dying person.

How can I support my dying loved one?

Be present. Hold their hand, speak calmly, play their favourite music. Hearing is believed to remain for a long time, so speak even if the person no longer responds. Respect their wishes. Ensure they are not in pain – inform the nurses if you suspect pain. You don't need to do anything special. Being present is enough.

Do I have to be present at the moment of death?

No. Sometimes death happens just when the family member has stepped out for a moment. Some interpret this as the dying person wanting to protect their loved one. Don't blame yourself if you weren't there. The moment of death is one moment – your entire presence during end-of-life care is what matters.

How do I cope as a family member during end-of-life care?

Hold on to your basic needs: sleep, eat, and exercise. Ask other family members and friends to take turns visiting. Use the support offered by the hospice unit – often conversation support is available for family members too. Give yourself permission to feel all emotions: grief, fatigue, relief, fear. All are normal.

Is end-of-life care free?

End-of-life care is part of public healthcare, organised by the wellbeing services county. It is not free of charge by law: inpatient care is subject to the statutory daily client fee, and hospital-at-home fees follow the wellbeing services county's price list. Most healthcare client fees count towards the annual payment ceiling. Ask the wellbeing services county or the hospice about hospice fees. Informal carer's support is applied for from your wellbeing services county.

Palliative End-of-Life Care

What End-of-Life Care Is

End-of-life care begins when curative treatment is discontinued and the focus shifts to quality of life in the final weeks or months. It doesn't mean giving up – it means shifting from fighting to caring.

Goals of end-of-life care:

Freedom from pain and symptoms as long as possible
A dignified and peaceful death
Honouring the dying person's wishes
Supporting the family before and after death

End-of-life care (saattohoito) is part of palliative care, although the terms are sometimes used interchangeably. Palliative care can last a long time, even years, whereas end-of-life care takes place close to the expected time of death, in the final days or weeks of life.

Forms of End-of-Life Care in Finland

Hospice

Finland has a few hospice homes, for example Terhokoti in Helsinki and Koivikko-koti in Hämeenlinna. Patients are usually referred to a hospice through the wellbeing services county. In hospices:

The environment is homelike
Care is available around the clock
Family members can stay overnight and be present freely
Emotional and spiritual support is available

Hospital End-of-Life Ward

Many hospitals have end-of-life care wards or beds:

Specialised staff
Pain management and symptom medication readily available
Visiting hours are usually flexible for end-of-life patients

End-of-Life Care at Home

Many people wish to die at home. Home end-of-life care is possible when:

A hospital-at-home or other care team can be reached around the clock
The family member has the strength and willingness to be at home
Pain management can be arranged at home
Living conditions are suitable

Benefits of home end-of-life care:

A familiar environment brings security
Family and pets around
The dying person decides their own daily routine

Challenges:

The family member's responsibility is great
Night awakenings and constant vigilance
Acute situations can be frightening

What to Expect at Different Stages

Weeks Before Death

Fatigue increases. The dying person sleeps more and more.
Appetite decreases. This is natural – don't force eating.
Withdrawal. The dying person may want fewer visitors.
Spiritual questions. Life's meaning, fears, forgiveness come to the surface.
Clear moments. Sometimes the dying person rallies unexpectedly – this is called "terminal lucidity".

Days Before Death

Consciousness declines. The dying person may be confused or unresponsive.
Breathing changes. Irregular, pauses, rattling (the "death rattle").
Limbs become cool and bluish. Circulation weakens.
Restlessness. Sometimes the dying person is restless – nurses can help with medication.
Thirst disappears. Moistening the mouth with a small amount of water or lemon swabs is sufficient.

Final Hours

Breathing becomes more sparse. Long pauses between breaths.
Cheyne-Stokes breathing: Breathing accelerates and slows in waves.
Eyes may remain open or half-open.
Skin becomes pale or mottled.
Unresponsiveness. The dying person may not respond to speech or touch.

Important to remember: The death rattle and breathing changes often sound distressing to the family member, but they generally do not cause suffering to the dying person. Ask the nurses if you are worried.

How to Be Present for the Dying Person

Speak

Hearing is believed to remain for a long time. Speak to your loved one even if they no longer respond:

"I'm here. You're not alone."
"I love you."
"Thank you for everything."
"You can go. We'll be okay."

Many family members find the last sentence important. The words can bring peace both to the dying person and to the family member.

Touch

Hold their hand
Stroke their forehead or arm
Moisturise their lips
Brush their hair

Touch communicates presence even when words no longer reach.

Create a Peaceful Environment

Quiet the surroundings: turn off the television, silence phones
Play soothing music or the dying person's favourite music
Reduce lighting
Limit visitors if the dying person seems restless
Ventilate the room if needed

Let Silence Be

You don't need to talk all the time. Silent presence is just as valuable. You can sit nearby, read a book, or simply be. The dying person feels your presence.

The Moment of Death

When Death Occurs

Death is often peaceful. Breathing stops. The heart stops. The face relaxes.

What to do:

No rush. There is no need to hurry.
You can stay by their side for as long as you want.
Inform the care unit: on a ward, tell the nurse; at home, call the hospital-at-home or home end-of-life care number.
If death occurs at home, follow the instructions agreed in advance. Death is always confirmed by a doctor, and the care unit will tell you how this is arranged.
You do not need to call the emergency number (112) for an expected death that has been agreed with the care unit. The end-of-life care decision includes a decision not to resuscitate. If the death is unexpected, call 112.

After Death at Home

A doctor confirms the death and writes the death certificate
The deceased does not have to leave home immediately – there is time for goodbyes
The funeral home collects the deceased when the family is ready
A loved one died – what do I do explains the next steps

Emotions at the Moment of Death

At the moment of death, you may feel:

Relief – the suffering is over, and that is a completely human feeling
Emptiness – shock and unreality
Sadness – even though the death was expected
Peace – if the death was beautiful and peaceful
Guilt – "could I have done something differently"

All of these feelings are normal. Feeling relief doesn't mean you didn't love them.

The Caregiver's Wellbeing

During end-of-life care, the family member's own needs easily fall by the wayside. But an exhausted family member cannot support the dying person.

Physical Basic Needs

Sleep. Ask someone else to take turns at night.
Eat. At least something, regularly. Ask friends to bring food.
Move. Even a short walk outside helps.
Shower. It sounds obvious, but in a crisis, basics are forgotten.

Mental Wellbeing

Give yourself permission to grieve now. Grief often begins before death – this is called anticipatory grief.
Talk to someone. A friend, pastor, crisis worker – anyone you can open up to.
Write. A diary or notes help organise the experience.
Ask for help. Hospice units often offer support for family members too: conversation support, peer groups, and pastoral care.

Permission to Step Away

You don't need to be present 24/7. You can:

Go home to shower and sleep
Go to work if it helps you cope
Spend time with children
Do something that feels good – without guilt

The dying person understands. And if they no longer understand, the nurses are taking care of them.

Children and End-of-Life Care

Should Children See the Dying Loved One?

Yes, if the child wants to and is prepared. Keeping children away can cause more fear than being present.

How to prepare a child:

Tell them how the dying person looks: "Grandma sleeps a lot. She is thin and may look different."
Tell them what sounds they might hear: "Grandma breathes loudly. It sounds intense, but it doesn't hurt her."
Give the child a task: bringing a drawing, holding a hand, putting on music
Designate a safe adult to be with the child who can leave if the child wants out

How to talk about death with children provides more tools.

Living Will and End-of-Life Care Decision

Living Will

A living will is a person's own declaration of will about what kind of care they want or don't want at the end of life. It may include:

A wish not to be resuscitated (the do-not-resuscitate decision is made by a doctor)
Wishes for the place of end-of-life care (home, hospice, hospital)
Pain management wishes
Wishes for emotional and spiritual support

End-of-Life Care Decision

The end-of-life care decision is made by a doctor in agreement with the patient or, if the patient is unable, together with the family. The decision means:

Curative treatment is discontinued
Focus shifts to symptom relief
Resuscitation is not performed
The care plan is updated

An end-of-life care decision does not mean stopping care. It means changing the direction of care.

After Death

The First Days

After end-of-life care, the family member may experience conflicting emotions: relief, emptiness, purposelessness. When caregiving ends, identity can be lost.

Give yourself time. Don't rush to "normal".
Funeral arrangements can bring structure to the days – funeral planning.
Ask for help with practical matters. A loved one died – what do I do is a good starting point.
Grief groups can be particularly valuable after end-of-life care because the experience is intense.

Long-Term Effects

The end-of-life care experience has lasting effects:

In addition to grief, trauma symptoms may occur, especially if the death involved suffering
Positive effects: deeper understanding of life, decreased fear of death, experience of closeness
Sometimes the hospice experience inspires a desire to help others – volunteering in end-of-life care

Palliative End-of-Life Care: a Guide for Family and Loved Ones