Palliative End-of-Life Care – a Guide for Family and Loved Ones | Muistovalkea

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 different from palliative care, although the terms are sometimes used interchangeably. Palliative care can last years; end-of-life care is care during the final weeks of life.

Forms of End-of-Life Care in Finland

Hospice

Finland has a few hospice homes, the most well-known being Terhokoti in Helsinki and Koivikko-koti in Hämeenlinna. 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

Increasingly, Finns wish to die at home. Home end-of-life care is possible when:

• A home care team is available 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 often the last sense to fade. 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."

The last sentence is particularly important. Many dying people seem to wait for permission to go. A family member's words can bring peace.

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:

1. No rush. There is no need to hurry.
2. You can stay by their side for as long as you want.
3. Call the care unit or the home end-of-life care number.
4. If death occurs at home, call the health centre on-call or home end-of-life care number. A doctor will come to confirm the death.
5. Don't call the emergency number (112) unless the death was unexpected. Resuscitation is not performed on end-of-life care patients.

After Death at Home

• A doctor confirms the death and writes the death certificate
• The deceased can remain at home for several hours – 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 do-not-resuscitate order (DNR)
• 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 together with the patient and 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

Frequently Asked Questions

What does end-of-life care mean in practice?

End-of-life care focuses on ensuring the dying person's quality of life during their final weeks. It includes pain management, symptom relief, emotional support, and supporting the family. It is provided in hospitals, hospices, or at home.

How do I know death is near?

Signs of the final days include constant drowsiness, loss of appetite, irregular breathing, cooling limbs, and declining consciousness. Nurses can help assess the situation.

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

No. Many people die just when the family member has stepped out briefly. It is common and doesn't mean you failed. Your entire presence throughout end-of-life care is what matters.

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

Sleep, eat, and move. Ask others to take turns. Use the support offered by the hospice unit. Give yourself permission to step away for a moment without guilt. All your feelings are normal – including relief and fatigue.

Is end-of-life care free?

End-of-life care is part of public healthcare. In hospitals and health centres, the normal daily care fee is charged. In hospices, fees vary. Home end-of-life care costs depend on the municipality's services. Informal carer's allowance can be applied for from the municipality.