Planning ahead
Talking with family and loved ones and letting them know about your wishes helps. The type of care you receive at home, your ability to be independent, and the impact that your care has on your family may affect the decisions and preferences you choose.
On this page:
> The last few weeks of life
> Nearing death
> Dying and the dying process
> What happens immediately after death
> Death at home
> Death in hospital or a care facility
> Funeral preparations
You may not be ready to consider this topic now, but this is here for you, your family and carers to come to later when you feel ready, should you wish.
Many people make a choice that they would prefer to die at home, where it is familiar and comforting. Many people also make the choice not to die at home. Both choices are equally valid, and this decision is yours to make. You may choose to make this decision together with your family.
You have the option to change your mind about this. It may seem a good decision to you to die at home when you are still feeling well, but your thoughts on this matter may change depending on changes to your health and your own life circumstances.
It is a good idea to talk to your family or carer about how you are feeling and check in with them to make sure that they can cope.
Additional reading:
> Dying to talk – these resources have been developed to help Australians work out what’s right for them if they were very sick or at the end of their lives.
The last few weeks of life
The last few weeks of life can be full of physical and emotional changes. If you are a carer it will help if you understand what to expect. Your role will change as the person becomes less able to do things for themselves.
As people approach the end of their life, new issues can arise. A new symptom may become apparent or an existing one may get worse. A person approaching the end of life is likely to be less able to do the things that they did before.
Keep in touch with the palliative care nurses and other health professionals to talk about what is happening. This can help you to feel less alone.
With the palliative care team in close contact with you and assisting with issues as they arise, there should not be any need for the person to be admitted to hospital. By having things in place with the palliative care team, such as after-hours contact numbers, you can avoid the need to call for an ambulance.
Death is hard, we don’t like it. We struggle to speak about it. We often wish death wouldn’t happen. Not to our family. Not to our friends. Not to those that we love. But death does happen. It happens to everyone. People we love die. People we love die too young.
Deborah Storie, Pastor, extract from 2018 memorial service
Nearing death
This can be a time when relatives and friends feel they are waiting with a sense of anticipation. You may feel like you’ve ‘had enough’. Thoughts and feelings like this are normal and very common among family members and people providing care.
Sometimes the dying process happens over a few days. This can be distressing for some people. If you are in a hospital or hospice facility, ask what they have available for visitors. Access to tea and coffee or extra chairs can make your time more comfortable.
In my experience, the moment of death, the dying itself can be easy. A letting go.
Mei, cancer nurse
As someone approaches the end of their life, they may become more drowsy, have less energy and become easily tired. They are likely to become weaker and may spend more time asleep.
They may become detached from reality or unaware of what is happening around them.
No one can give an exact answer of when someone will die. There are some common indicators that death may be near, within days or weeks.
Ask the palliative care team if you want more information or help identifying if death is close. Sometimes death may still occur without much warning, with some or many of these signs not occurring.
As he deteriorated, I knew I could give him a massage, he said it was a relief, that was how I knew I could help. And he would just close his eyes and escape his reality for however long while he was getting one, and I think that he benefited the most from that.
Andrew, carer for his father with late-stage pancreatic cancer
Dying
For many people, dying is peaceful. Each person’s death is individual, just as their life is.
The palliative care team will expect to spend more time with you in these later stages, so ask for help if you are concerned.
You can bring great benefit to a person dying, just by being there, sitting with them, holding their hand, or speaking in a calm and reassuring way.
Supporting a loved one through the late stages of their cancer journey can be difficult. There are some aspects of care that you can and will want to provide – these are comforting measures for your loved one. Wherever possible, the palliative care team – including the doctors, nurses and support staff – should be providing regular care and support.
It is hard to say what exactly will happen in the final stage of life and especially near death. The following symptoms are examples of what may happen in some people with cancer who are dying. While not all may happen, it may help you to know about them.
- Weakness – usually the patient cannot get out of bed and has trouble moving around in bed
- Needs help with nearly everything
- Less and less interest in food, often with very little food and fluid intake for days
- Trouble swallowing pills and medicines
- Drowsiness – the person may nap or sleep much of the time and may be hard to rouse or wake
- Short attention span, may not be able to focus on what is happening
- Confusion about time, place, or people
- Limited ability to cooperate with carers
What carers can do:
- help the patient turn and change positions every 1 to 2 hours, the best time to reposition is about 30 minutes after pain medicine is given
- speak in a calm, quiet voice
- if the patient has trouble swallowing pills, contact your doctor with urgency to notify them and discuss alternative medications
- try ice chips or sips of liquid with a straw
- apply cool, moist face washers to head, face, or hands.
- More sleeping during the day
- Hard to wake or rouse from sleep
- Confusion about time, place, or people
- Restless, might pull at bed linen
- May talk about things unrelated to the events or people present
- May have more anxiety, restlessness, fear, and loneliness at night
- May have a short time when they are mentally clear before going back into semi-consciousness.
What carers can do:
- plan your times with the patient when he or she is most alert or during the day or night
- remind them who you are and what day and time it is
- continue pain medication under the advice of your doctor, as this may be the cause of the change in consciousness
- if they are restless, try to find out if they are having pain
- always check with your doctor or treating team about administering medication as prescribed
- use calm, confident, gentle tones
- gentle touching, caressing, holding, and rocking are sometimes helpful and comforting.
- The patient may have less interest in food
- They may have a dry mouth
- May no longer need some of their usual medicines, such as vitamins, blood pressure medicines, and diuretics – check with the doctor or nurse
What carers can do:
- put lip balm or lubricant (like Vaseline®, pawpaw ointment) on the lips to prevent drying
- ice chips or sips of water or juice from a straw.
- Mucus may collect in the back of the throat
- This may cause a “rattling” sound with breathing that’s very distressing to hear, but it isn’t usually uncomfortable for the patient
- Secretions may thicken and build up
What carers can do:
- if the mouth secretions increase, adding humidity to the room can help
- if the patient can swallow safely, give ice chips or sips of liquid through a straw
- change the patient’s position – turning them to the side may help secretions drain from the mouth
- continue to clean the teeth and mouth with water and a soft toothbrush or foam mouth swabs
- certain medicines may help – always check with your doctor or treating team before administering medications.
- Arms and legs may feel cool to the touch as circulation slows down
- Skin on arms, legs, hands, and feet may darken and look blue or mottled (blotchy)
- Other areas of the body may become either darker or paler
- Skin may feel cold or dry or damp
- Heart rate may become fast, faint, or irregular
- Blood pressure may get lower and become hard to hear
What carers can do:
- keep the patient warm with blankets or light bed coverings.
- do not use electric blankets.
- Vision may become blurry or dim
- Pupils may stay the same size
- May have trouble closing eyelids
- Most patients can hear you even after they can no longer speak
What carers can do:
- use low wattage/lumen lights, such as a lamp, which may be better than room lights
- always assume the patient can hear you
- continue to speak with and touch the patient to reassure them of your presence.
- Breathing may speed up and slow down
- Patient may grunt while breathing
- Neck muscles may look tight to help breathe
- Mucus in the back of the throat may cause ‘rattling’ or ‘gurgling’ noise with each breath
- The patient may not breathe for periods of up 10 to 30 seconds
What carers can do:
- reposition the patient on their back, off to one side, then the other
- raising the patient’s head may give some relief – use pillows to prop the patient’s head and chest at an angle or raise the head of a hospital bed
- any position that seems to make breathing easier is OK, including sitting up with good support – a small person may be more comfortable in your arms.
- Urine may become darker and decrease in amount
- The patient may be incontinent of urine and stools
What carers can do:
- use incontinence pads, put a ‘bluey’ or a waterproof pad under them
- if the patient has a catheter to collect urine, the nurse will teach you to care for it
- bathe the patient as they can tolerate it – this could be a sponge bath or simply washing certain parts of the body.
The dying process
In the last few hours of the natural dying process, a person’s breathing becomes shallower and faster than normal. The breathing muscles become weak like all the other body muscles. When the breathing muscles are weak, extra muscles help. The person’s breathing pattern often becomes irregular with pauses. These pauses are often followed by a few fast and deep breaths. The person dies when he or she does not draw a breath again after a pause.
Immediately after a death
Immediately after a death is often a peaceful time. You, family, and friends may just want to sit with the person. You may or may not want to be alone.
Family and friends can help you during this time, sometimes just by being there.
An expected death is not an emergency. You do not need to call for the police or an ambulance. A doctor will need to come and certify the death. The palliative care team can give you more guidance on what to do.
At home, there are things that you will need to organise. Writing a list of things to do in advance, with names and phone numbers to ring can help.
Death at home
Following the death, when the family, carer or support person is ready, you will need to notify your palliative care service (if one was involved in the person’s care), your doctor, or you can directly contact a funeral director of your choice. A palliative care nurse may visit the home to support the family and carer following the person’s death.
The palliative care team providing care can give you more guidance on what to do.
Death in hospital or a care facility
If the death happens in a hospital or care facility, the staff will help you through the process and help you understand what you need to do. Staff are there to support you and are always available to answer your questions if you are unsure.
What can be done with medications that are left over after someone dies?
It is not a good idea to flush leftover medications down the toilet, as this pollutes the environment. Keeping un-needed medications at home can also present a safety issue.
It is a good idea to take leftover medications to a pharmacy, so they can dispose of the medications properly. Most pharmacies take leftover medications that you want to get rid of.
Funeral preparations
You may want to think about the kind of funeral you would like. Others prefer to leave it up to their family to plan.
Even if you don’t want to plan your funeral in detail, it is often meaningful to be involved in the planning with your family and write down some basic information such as:
- Do you want a funeral service of some other gathering?
- Do you want to be buried or cremated?
- Where would you like your remains or ashes placed?
- Who would you like to be invited, and who would you like to speak?
- Is there special music you would like played?
- Would you like flowers or would you prefer people give to a particular charity instead?
- Is there a special memory or legacy you want to share?
You may also like to contact the Australian Funeral Directors Association at www.afda.org.au for further information on prearranging or prepaying for a funeral.
