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3.1 Preparing for death

Some questions you might use as conversation starters with your PCSE team.

  • What can we expect in the last days of life?
  • What should I say if the person I care for asks, ‘Am I dying?’
  • Will you be able to tell me when it is getting close to the time that the person I care for will die?
  • When should I call the rest of the family? What should I say to them? Could you speak to them?
  • How will I know when the person I care for has died?
  • What happens after they die? (What happens to the body? How do we arrange a funeral?)
  • What support is available to the family after the person dies?

 

Why is it important to prepare?

The last few days of a person’s life are very different – being prepared will help you get through this difficult time. Our service is available to provide support, help and understanding during this time. We can help you prepare a simple plan which deals with immediate practical issues.

Organise a local GP in advance to prepare the death certificate, especially if you have specific personal or spiritual rituals (for example, burial is required within 24 hours of death), and in case the death occurs over the weekend.

If you have any particular traditions or cultural needs, please tell the PCSE team

If you are usually alone with your loved one, you may prefer to have a close friend or relative available at short notice to be with you at this time. The deceased person may remain at home for several hours. You may like other close friends and relatives to be able to say goodbye, in addition to spending some time alone with them before they are picked up by the funeral director.

Plan to have someone available for you

The funeral director will make an appointment to discuss arrangements and costs with you, when you are ready to do so and normally within a day or two after death has occurred. You can involve friends and family as much as you wish.

Select a funeral director

Preparing for death checklist

  • Is a quick burial required?
  • If yes, have I discussed with my PCSE team?
  • Who is available to support me at short notice?
  • Record name & phone number
  • Has a GP been arranged for a death certificate?
  • Has a Funeral Director been selected?
  • Has a religious / spiritual guide been notified?

Signs that someone is dying

  • The time before death is generally peaceful
  • Please ask the PCSE team for help at anytime
  • We usually have increased contact with you during the last stages of life
  • Simply sitting with a person, holding their hand and speaking in a calm and reassuring manner brings enormous benefits, even if there is no response

‘Being with’ can be more important than ‘doing for’

The following is an overview of common physical and emotional changes prior to end of life. Not all of the changes will occur, nor will they occur in any particular order. These changes indicate that the body is preparing itself for the final stages of life. During this stage, the systems which sustain life begin to shut down, with physical, mental, emotional and spiritual changes happening over weeks or days, or may begin only hours before death.

Physical changes

 Sleeping

The person will gradually spend more time sleeping and may stop communicating and be difficult to wake up. Don’t shake the person or speak loudly; speak softly and naturally. Never assume someone cannot hear – hearing is one of the last senses to go.

Spend time with your loved one when they seem most alert.

 Fluid & food

As death approaches, there will be less need for food and drink as the person will naturally conserve energy. This is a natural process. Trying to feed someone who is unable to swallow may cause distress.

Food requirements reduce as the body shuts down:

Solids → Soft Foods → liquids → ice chips → water

Moist mouth swabs (sponge on a stick) or tiny amounts of crushed ice will help relieve feelings of thirst. Do not force food or drink at this stage. Let your loved one know it is OK not to eat at this time.

Respect and acceptance helps your loved one and you.

Your PCSE nurse can help you with mouth care.

 Restlessness

Restlessness, agitation and repetitive actions can occur in the last days or hours of life. This may be caused by low circulation, toxins or spiritual or psychological issues.

Do not try to restrain motions. Make the environment safe. Speak calmly and quietly.

Find ways to help your loved one relieve tension or fear. Things which may be helpful include:

  • Massaging hands or forehead lightly
  • Recalling a favourite place
  • Recalling a favourite experience
  • Reading something comforting
  • Playing soft and familiar music
  • Giving assurance that it is OK to let go

Call PCSE if you are concerned. Medications are available.

 Confusion & disorientation

The person may become increasingly confused about time and place and people they know. Levels of awareness may change frequently and unexpectedly. The use of a night light may help. Do not disagree with what they say. Hold their hand and reassure them.

Identify yourself by name and talk calmly and confidently to be reassuring.

Call PCSE if you are concerned about your loved one.

 Incontinence

Loss of control of urine or bowel movements can occur very close to death.

Maintain dignity and respect. Use incontinence pads and sheets to protect the person and bedding. This will help maintain comfort & cleanliness. It is a good idea to keep track of bowel movements and tell the PCSE team when they call.

It is important to keep the skin clean and dry.

 Urine output

Urine output decreases and can become dark in colour. This can be caused by lower fluid intake.

 Secretions

Saliva and mucous may increase and collect in the back of the throat, as cough or swallowing decreases. This sometimes causes a gurgling or bubbling noise known as the ‘death rattle’. This can be distressing for carers, but usually causes no harm for the person. The sound does not indicate new or severe pain.

Lift head off the bed with pillows. Turning body from side to side may help.

Call PCSE if you are concerned. Some medications can dry secretions.

 Temperature

Changes in body temperature are common, and your loved one may feel hot an clammy sometimes and cool other times. The colour of the skin on the arms, legs and underside may change as circulation slows down.

Create warmth if they appear cold and remove covers or use a light sheet when hot.

Too much heat can cause restlessness. Provide good ventilation and cool towels if necessary. Be guided by your loved one’s wishes – even if they seem odd.

 Breathing

Breathing patterns can become irregular: sometimes faster, sometimes slower. It is normal to have intervals from ten seconds to several minutes where no breathing occurs. Providing oxygen at this stage is not necessary.

Continue to support and reassure your loved one – hold their hand and speak gently. This is the time to just be with them.

Call PCSE if you are concerned.

 Emotional changes

As death approaches, people may become less interested in the outside world and details of daily life. They may become less interested with other people, wanting only a very few close. This process is part of letting go and saying goodbye.

A person may reflect on different memories or have conversations with others who have already died. They may also become delirious, which might involve agitation, hallucinations or out of character gestures or requests.

Call PCSE if you have any concerns during this time. We are available to provide support, help and understanding.

 Withdrawal

The person you are caring for may seem unresponsive, withdrawn or in an unconscious state. This might mean they are preparing for death – withdrawing from surroundings and close relationships – and might signal that they are ready to go. Hearing is thought to be the last sense that remains.

Speak to your loved one in a normal voice. Identify yourself by your name and hold their hand and say what you wish to say.

 Vision-like experiences

A person who is dying may speak or claim to have spoken to people who have already died. This does not necessarily mean that they are hallucinating, but withdrawing from this life.

Do not contradict or argue about what is said or seen. Affirm the experience – they are normal and common.

 Giving permission

Giving permission to your loved one to let go, without making them feel guilty for leaving or trying to keep them with you to meet your own needs, can be difficult. A dying person will normally try to hold on, even though it may bring discomfort, to make sure those who are going to be left behind will be alright.

Giving your loved one reassurance that it is alright to let go whenever they are ready is one of the most important things you can do for them at this time.

 Saying goodbye

A family’s ability to reassure and give the person ‘permission to die’ can help them to let go. Saying goodbye is personal and can be said and done in many different ways. It may include lying in bed with them, holding their hand or saying whatever you wish to say.

Tears are a natural part of the grieving process and you should not feel they need to be hidden or apologised for.

What happens when someone dies?

How will I know that death has occurred?

What do I do next?

When you are ready

  • You can call your PCSE team if you would like some support. We can attend the home
  • Call for a PCSE nurse or your GP to complete a verification of death
  • The funeral director will take this verification of death when they come to your home

If death happens at night, you can wait until the morning to arrange verification of death.

There is no need to bathe the person, but you may sponge away bodily fluids or perspiration

  • Remove sources of heat from the room such as heaters, electric blankets or hot water bottles
  • Straighten your loved one’s body to prevent stiffness. Replace dentures

 

When you are ready to have your loved one attended to and transferred

  • Contact the Funeral Director
  • They will liaise with the GP/doctor to obtain a death certificate (A funeral will not be able to take place if the death certificate is not available)
  • They will take your loved one and support you through the funeral arrangements

Call PCSE if you need help or advice.