What to expect in the final days of life

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 may feel unprepared. While death is natural and touches all of us, it can be incredibly difficult to process, but there are practical tools and support available to help you through.

What to expect in the final days of life

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 may feel unprepared. While death is natural and touches all of us, it can be incredibly difficult to process, but there are practical tools and support available to help you through.

Understanding what to expect 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. 

When you know that your loved one is progressing normally towards their final moment it can allay many of your fears. This awareness can also 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.

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 or extreme pain) can happen when someone’s health is declining. In stressful situations it can be hard to know what to do. You can make arrangements with a community nurse, palliative care practitioner or family member to be on hand should you need crisis support at any hour. 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 think through the necessary steps and implications of any emergency medical intervention, such as calling an ambulance and being moved to hospital, it's also important to know that things may not always go as 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.

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 help you avoid any unwanted medical intervention.

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 help you avoid any unwanted medical intervention.

Conversations at The End of Life: Planning and Preparation

In part three of our documentary series, Conversations at The End of Life that features stories and wisdom from fellow caregivers, we look at how others have approached planning and preparation. 

 

What to Expect in The Last Stages

There are some typical changes that can take place as the body prepares for its final moments. 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, and unable to recognise their surroundings or familiar faces. Talk to them with a gentle, calm voice, identify yourself by name. Guide your loved one in taking deep, slow breaths—they are the most useful tool in addressing 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 and they might be unable to swallow. Do not to force food or fluids when this happens, as it could cause choking. Mouth care can be very important at this stage. Sips of water or sucking ice can help relieve a dry mouth and throat, while swabs moistened with saline or water will keep their mouth clean. Applying balm on dry 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. They may speak incoherently. 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.
  • Breathing: Towards the end, 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 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 confronting, do not be alarmed; it is 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 every two to four hours for their own comfort and to avoid pressure sores. 

Not all these changes will be present in every person and they won’t occur in any particular order. 

While these signs can be frightening or upsetting if not expected, remember that they are normal. If you 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, are usually peaceful for them.

At the moment of death the person will stop breathing and their heart will cease beating. There may be some muscle twitches, but that will end quickly. Their face will relax and the pupils will grow large and still.

Afterwards, the body goes through 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 don't start to stiffen for some hours.

When you are ready, call your doctor to arrange a death certificate, or if you prefer, a funeral director can make this call on your behalf. You will need to inform the doctor or funeral director of the time of death. 

Once their body has been removed, emotions may overwhelm you. You may be exhausted and unable to sleep. This are natural reactions, and self-care is vital at this time.

You have shared an incredible gift with the person you cared for and with everyone who has been part of that person’s life.

Give yourself permission to feel proud of the ways in which you have accomplished a unique task.

Meet Violet Guide, Bernadette.

Bernadette can help you navigate the final stages, because, like all our guides, she brings lived experience as well as extensive training. "When it came for caring for my husband I felt lost," explains Bernadette. "If I had been able to talk to someone who could have steered me in the right direction that would have been a great help."

"As a guide I hope to share my experience and let people know that there is support, and there are services they can tap into. You just need to know where to go."

 

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