Understanding what happens
Most people who provide daily care for a family member or friend in the last stages of life have never done so before. This means they may not be familiar with the experience or what is considered ‘normal’ – and be completely unprepared for it when it does happen. Death is natural and touches all of us.
Having some understanding of what to expect and the changes that may occur in the last stages of life can be reassuring. It can help you and your family and friends live each day more fully with the person you are caring for. It can allay some of your fears and provide comfort when you know that they progressing in a normal way towards their final moment. Finally, this awareness can give you some ideas about how to respond to the physiological changes that are taking place in the person you are caring for and when to get medical assistance – if a catheter becomes blocked, for example.
Planning for the unpredictable
Even when we think we are prepared for unexpected events, the last stages of life are unpredictable and crisis moments (such as a seizure, choking fit or extreme pain) can happen when someone’s health is declining. In these kinds of stressful situations it can be hard to know what to do, so be sure to have the number of someone you can contact for help – at any hour of the day or night – close by. This might be your GP, a community nurse, palliative care practitioner or family member. Our Circle of Care model will help you reliably coordinate these services and provide reassurance that you have access to specialist medical support if you need it.
Although it’s a good idea to plan for what an emergency will look like for you and the person being cared for, and to think through the necessary steps and implications of any emergency medical intervention (such as calling an ambulance and being moved to hospital), be aware that it may not turn out the way you had imagined.
Circumstances can change suddenly and dramatically when someone is near death. At these times it’s important to do what’s right for you and your loved one, taking into account their final wishes if you know what they are. Preparing an advance care directive (which records instructions about the type and level of health care a person wants to receive if they are no longer able to make or communicate decisions about their treatment) can make clear their wishes and avoid any unwanted medical intervention.
What to expect in the last stages
The effects on both the mental and physical state of each person are unique as the body and brain prepare for the final moment. However, there are some typical changes that might take place. These include:
- Anxiety, agitation and restlessness: Chemical changes in the brain can affect thinking, awareness and emotion. The person might be confused, disoriented, restless or agitated. They may be unable to recognise their surroundings or familiar faces. Talk to them with a gentle, calm voice, identify yourself by name and encourage deep, slow breaths – the most useful tool of confused states, anxiety and pain causing restlessness.
- Eating and drinking: The body’s process of shutting down means that a person may want to eat and drink less – because the body no longer needs nutrients – and they become unable to swallow. Do not to force food or fluids when this happens, as it could cause choking. Mouth care can be very important to the comfort of the person now. Sips of water or sucking ice can help relieve a dry mouth and throat, while swabs moistened with saline or water will clean the mouth. Applying balm on dry or cracked lips might also be soothing.
- Sleep and consciousness: The person may drift in and out of consciousness and gradually become unable to respond, even though they can hear you. They may dream vividly or be incoherent in what they say. Hearing is preserved until close to the final moment, so be sure to talk to them and always explain when you are delivering care, such as repositioning them in bed or cleaning their mouth.
- Breathing: Breathing patterns change, becoming rapid and shallow or irregular, with long pauses in between – this is called Cheyne-Stokes respiration. Breathing can also be quite loud and sound like a groan or gurgle as saliva and secretions pool at the back of the throat because the person is unable to swallow. This is known as the ‘death rattle’ and while it can be disturbing, do not be alarmed; it is often a natural part of the process.
- Incontinence: The person might become incontinent, losing control of their bladder and bowel. While urine output will eventually stop, it is important to check often to keep them clean and comfortable.
- Skin and circulation: As the body shuts down, so does circulation to the extremities (arms and legs). The person’s skin may become mottled or feel cool to touch as blood flows away from non-vital areas to protect organs. It is necessary to reposition the person regularly (every two to four hours) for their own comfort and to avoid pressure sores unless they are on a special air or other mattress designed to prevent pressure injuries.
Not all these changes will be present in every person and they won’t occur in any particular order; they sometimes appear a few hours, or even a few days, before the final moment. While these signs can be frightening or upsetting if not expected, remember that they are normal. If you notice other changes not described here or are concerned about anything, your GP, home nursing or palliative care team can assist you by providing information and support – remember that they are there to help you.
The final moment and immediately after
The days before the person’s final moment, as their body winds down and relinquishes life, are usually peaceful for them. Eventually, the person will stop breathing altogether. There will be no pulse as the heart also stops beating. There may be a few muscle twitches, but that will stop quite quickly. The face will relax and the pupils will be large and still. Afterwards, the body goes through some more changes. As muscles are completely relaxed, body fluids may be expelled from the rectum, bladder or mouth. Their eyelids may be partially open and their mouth may open, too. Muscles won’t start to stiffen for some hours.
There is no immediate hurry to have the person’s body taken away, nor is there any need to contact anyone immediately unless you want to.
If your loved one is in a facility (such as a hospital, hospice or aged-care home), the staff will support you and advise the next steps, including contacting a doctor to certify the death and completing the necessary paperwork. The staff will then wash and tidy the person’s body. Once this is done and the paperwork is complete, they will contact the funeral director to arrange collection of the body. In some places, there are rituals around the person’s body leaving the facility; for example, in some aged-care homes, the staff will form a guard of honour as the suitably covered body is wheeled out on a stretcher through the front door.
If your loved one is at home and you are alone, you might want to call a relative, friend or neighbour for support. It is important that you do everything in your own time, especially if you would like other people to come and say their goodbyes.
While the person’s body can be kept at home for a period (in NSW, this is five days but you will need to check the legal requirements in other states and territories), it will need to be cared for appropriately. Some funeral homes can arrange for the loan of a cooling pad or table that will keep the body at a suitable temperature to prevent tissue breakdown. It is best to discuss these arrangements with the funeral director, preferably before the person’s final moment, so they can plan to support you with equipment and advice when needed.
Remove any heat sources (electric blanket, heaters, hot water bottles) and keep the room as cool as possible. You may like to arrange the person’s body straight on the bed and tidy any fluids away or place towels or pads beneath them. If the person’s mouth is slack and open, roll a small towel under their chin. You may want to wash the person’s body, comb or tidy hair or change their clothes. Or you may want to do nothing but sit with them. Choose what is right for you and give yourself permission to do just that. Family, friends and especially children may want to be near the person, touching, stroking and holding them in order to make this farewell meaningful for them as well.
When you are ready, a doctor can be called to arrange a death certificate (a funeral director can make this call on your behalf). You will need to advise them of the time of death. If a funeral director is taking the person’s body, they will be able to do so after the death certificate has been issued.
Once their body has been removed, emotions may flood and overwhelm you and the people around you. You may be both exhausted and unable to sleep. Give yourself permission to feel proud of the ways in which you have accomplished a unique task. You have shared an incredible gift with the person you cared for and with everyone who has been part of that person’s life.