End-Of-Life Stages: What To Expect In The Final Stages Of Life

As with birth, everyone’s experience with death is unique. While some may have a gradual journey, others may decline quickly. Caring for someone nearing the end of life is an incredibly profound and personal experience, marked by unique challenges and deep emotional bonds. Whilst it is a privilege, it can also take a significant toll both physically and emotionally on both the person dying and the caregiver, particularly if they are providing 24/7 care for a loved one in their home. Without the right support, the pressure of having only one chance to ensure a loved one’s final journey is comfortable, dignified, and aligned with their wishes can make end-of-life care overwhelming.

If you are caring for a loved one, understanding the stages of this journey can bring comfort and clarity when you seek it the most. This blog aims to guide you through these stages, offering insights and practical advice to help navigate this sacred time with compassion, dignity, and the necessary support to ensure the last moments are as peaceful and meaningful as possible.

The Difference Between End-of-Life Care And Palliative Care

There is often some confusion between end-of-life care and palliative care, as the terms are frequently used interchangeably. While they are connected, they are, in fact, distinct. Before we move onto the stages of end-of-life, it is important to just clarify the differences between these two types of care:

Palliative care can begin as soon as someone is diagnosed with a life-limiting illness, such as terminal cancer, or at any stage thereafter when symptoms start to advance. Often, palliative care is provided alongside other treatments like chemotherapy. Its primary aim is to manage pain and other symptoms to allow the individual to live comfortably and fully for as long as possible, even if a cure is not achievable.

In comparison, end-of-life care is the final stage of palliative care, administered during the last few weeks, days, and hours of a person’s life. The goal of end-of-life care is not to prolong life but to ensure that the individual’s dying wishes are honored and that their transition is dignified and pain-free, providing complete peace in their last moments.

End-Of-Life Signs

There are common warning signs indicating that someone is transitioning from being in palliative care to nearing the end of their life. These signs include:

Breathing Changes

As a person progresses into the last stage of their life, it is common for breathing patterns to change due to inactivity. Spending more time resting rather than being active can lead to decreased oxygen demand, weakening muscles, fluid accumulation in the lungs, and neurological changes, which can diminish the brain’s ability to regulate breathing. Some medications like opioids can also suppress the respiratory system, causing slower and irregular breathing.

These changes can manifest in unusual ways, whether it be cycles of rapid breathing followed by no breathing, gasping, laboured breathing, shallow breaths, or a gurgling noise resulting from fluid build-up in the throat and airways (commonly referred to as the “death rattle”).

It’s important to note that whilst some of these changes may sound distressing, it does not necessarily mean they are in discomfort or struggling for breath.

Common strategies that a professional caregiver may take to manage these breathing changes are to reposition the person onto their side to clear the airways, use medications to reduce secretions, using a humidifier to keep airways moist, and maintain a calm environment to help the person in need stay relaxed.

Sleeping More Often

Your loved one may start to sleep more than usual or seem drowsy even when they are awake. They may even lose consciousness for a while. This is normal, and it is important to just go with it and let them sleep whenever they want. Calm surroundings, soothing music and a dimly lit room will aid peaceful sleep. You can hold their hand and talk to them softly for reassurance and comfort – they may still be able to hear you during these moments.

Confusion

Increased medications and chemical changes in the brain can alter someone’s normal personality, mood, and habits. They may appear more restless or agitated and may even become increasingly confused to the point where they may hallucinate or not recognise you or other close friends and family members. Plus, as they begin to sleep for longer periods, the lines between dreams and reality can become easily blurred. Whilst medications can help ease their agitation, you could also ensure they have peaceful surroundings to keep them calm, remain close for reassurance, and if they get something wrong, there is no need to correct them as recognising they have made a mistake can cause distress.

Loss Of Appetite And Thirst

It is completely normal to experience a decline in appetite and thirst near the end of life. The body’s metabolism slows down, reducing the need for nutrients and fluids, while vital organs, including the digestive system, begin to function less efficiently. The body’s energy focuses less on digestion and more on maintaining essential functions. Medications for pain and symptom management can also suppress appetite and thirst, and neurological changes can alter the sense of hunger and thirst. If your loved one is finding it hard to swallow, this may affect their desire to eat too.

Although it may seem strange not to encourage a loved one to eat, there is no need to force them to at this stage. In fact, attempting to do so may cause more harm than good. These changes are a natural part of the dying process so try not to become fixated on the fact they are not eating or drinking very much and turn your focus to providing comfort instead.

Focus on offering small portions of their favourite foods or drinks if they show interest in eating but respect their decision if they decline. Keep their mouth moist with ice cubes, a damp sponge, offering small sips of water, or applying lip balm can help also. Offering reassurance and being attentive to their needs will also help them remain dignified whilst trying to consume food and drink – if this is a concern to them.

Change In Skin Colour/Temperature

It is common to notice changes in a person’s skin temperature and colour, such as paleness or mottling, as a result of decreased circulation. A reduction in blood oxygen levels can also contribute to a bluish or grayish tint which looks a bit like bruising.

As blood vessels start to narrow, skin will become cooler, whilst organ failure further impacts temperature regulation. You might notice that their hands, feet, nose, and ears feel colder to touch. Medications used can also affect the skin’s appearance. Again, these changes are natural and while they may look shocking, they usually do not cause discomfort. Being on hand with a warm blanket or two when needed will help keep your loved one comfortable.

Other common end-of-life signs include:

Loss of bladder and bowel control. Or a change in bathroom habits – they may go less often if they are eating and drinking less.
Metabolism can affect body odours.
Teeth or hand clenching, grimacing, crying out and moaning can all be due to increased pain levels. A professional caregiver will be able to medicate appropriately to ease their pain as much as possible.

How Long Is End Of Life Care?

As we mentioned at the beginning, everyone’s journey towards death is unique, so there is no one-sized-fits all timeline of what will happen and when, when it comes to the end of someone’s life. For this reason, it is impossible to say how long each end-of-life stage will last. However, the information below provides a generalised overview of common signs and changes observed as a person progresses through various stages towards the end-of-life:

A Few Months Before Death

Decreased appetite and weight loss.
Fatigue and decreased energy.
Mild pain and discomfort.
Withdraw from people and stop doing the things they have always enjoyed.
Normal breathing patterns.
Cool extremities.
Emotional adjustments to prognosis.
Reduced peripheral circulation.
Decreased urine output and bowel movements.
Sensory awareness changes.
Ability to communicate effectively.
Medications focus on symptom management.

Top tips: this is a good stage to discuss their care going forward and to facilitate meaningful conversations with regards to if your loved ones has an advance care directive, if they’ve named someone to make important decisions about their medical care and if they know where all their relating paperwork is/what their online passwords are if online. You can also ask if they have a current will, funeral preferences, and other requests.

Do not forget about the details either. Now is the time to discuss the preferences of your loved ones with regards to all aspects of their end-of-life journey, from bucket lists, to who they want present and when.

A Few Weeks Before Death

Further weight loss and muscle weakness.
Increased sleepiness and difficulty staying awake.
Increased pain and discomfort.
Irregular breathing patterns
Mottling and coolness of the skin.
Heightened emotional responses and reflections.
Further reduction in circulation.
Urinary and bowel incontinence.
Heightened sensitivity to touch and sound.
Difficulty speaking or finding words.
Increasing need for symptom management medications.

Last Hours Before Death

Profound weakness and fatigue.
Decreased responsiveness and ability to communicate.
Pain may be difficult to control despite medication.
Irregular, shallow, or noisy breathing (death rattle).
Bluish or greyish skin tone – looks like bruising.
Withdrawal and decreased responsiveness.
Cold extremities due to decreased blood flow.
Inability to swallow or process food and fluids.
Sensory shutdown – decreased response to what is going on around them.
Speech may become unclear or may be unable to speak.
Focus on comfort measures – adjust medications accordingly.

Top tip: If you haven’t done so already, take the opportunity to say goodbye to your loved one when transitioning to this stage. Remember, hearing is the last sense to go, so if have something you want to say, even if your loved one seems unresponsive, they may still hear you.

At The End

Minimal or no appetite.
Complete loss of consciousness.
Pain often diminishes.
Very shallow or absent breathing.
Cool to the touch.
Profound peace or detachment.
Slow, weak pulse.
Minimal or no urine output. No bowel movements.
Complete sensory shutdown.
Inability to communicate verbally.
Medications for comfort and symptom relief.

What Happens After your Loved One Passes Away?

Take the time you need. Stay with your loved one for as lon as feels right for you, whether alone or with wider family and friends. An expected death isn’t an emergency. If your loved one is in a hospice or hospital, notify their health care team when you feel ready.

If they died at home, call their doctor, or a funeral home to find out what your next steps should be. The doctor will issue a medical certificate that states the official cause of death to allow the death to be registered – visit gov.uk for details on how to register the death. When you feel ready, you can contact a funeral director of your choice who will move the body.

If a professional home caregiver has been hired to deliver end-of-life home care, they will be able to do all this for you.

How Can Verilife Help With End-Of-Life Care At Home?

Verilife Home Care Services provides comprehensive end-of-life care at home, focusing on comfort, dignity, and support for both the individual being cared for and their families. Our services include pain management, symptom control, emotional and psychological support, and assistance with daily activities. Our trained professionals create personalised care plans tailored to meet individual needs, ensuring a peaceful and respectful environment. Verilife aims to maintain the highest quality of life possible during this challenging time, prioritising compassionate care and providing the guidance needed for families navigating the end-of-life journey.