If you have a loved one who has recently entered hospice care or is going to, you may have only a few months, or even weeks, to say goodbye. During this time, they may exhibit changes in their behavior, diet, mood and much more. Unfortunately, many people are unprepared to adequately care for their loved ones because they don’t know what to expect from the dying process.
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Death is something we all must face, but for many people the dying process is shrouded in mystery. Saying goodbye to a loved one can be hard to do, but learning about what to expect from the dying process can make it easier for you to care for them as they leave the earth. It can also help you say goodbye in the best way possible, and better cope with the aftermath of your loss.
End of Life Signs
Every death follows its own course, but home hospice patients generally exhibit several stages of symptoms before passing.
Signs 40 days before death
1. Increased Fatigue: Individuals may feel more tired than usual and may need to rest frequently.
2. Withdrawal from Social Activities: Many may start to withdraw from social interactions and show less interest in activities they previously enjoyed.
3. Decreased Appetite: Eating habits may change, with a significant decrease in appetite and reduced interest in food.
4. Changes in Sleep Patterns: Sleep may become more fragmented or individuals may sleep longer than usual.
5. Mental Confusion: There may be moments of forgetfulness, confusion, or difficulty concentrating.
6. Physical Weakness: Muscle weakness and decreased energy are common, making daily tasks more challenging.
7. Pain or Discomfort: Pain in certain areas, especially for those with chronic illnesses, may increase or become more noticeable.
8. Decreased Interest in Personal Hygiene: Some may start to neglect their usual self-care routines.
9. Increased Sensitivity to Cold: Feeling colder than usual can be a sign as blood circulation begins to change.
10. Digestive Changes: There may be digestive issues, such as bloating, constipation, or changes in bowel habits.
Weeks Before Death Symptoms
Several weeks before death, your loved one may start exhibit a range of behavioral changes relating to their sleeping patterns, eating habits and sociability. They may begin to sleep more often and for longer periods. They will start to refuse foods that are difficult to eat or digest, but eventually they will refuse all solid foods. Do not try to force them to eat, as it will only bring discomfort to them. Your loved one may enjoy ice during this time, since it will keep them cool while also hydrating them.
Unfortunately, your loved one may become withdrawn, less active and less communicative. They may spend more time alone introspecting and may turn down company. Some also appear to become comatose and unresponsive, but this is a symptom of withdrawal. Your loved one can still hear you, so speak in a calm, reassuring voice while holding their hand. Children may become more talkative, even if they withdraw from other activities. It’s important to let your loved one set their own pace during this time. Your loved one may also start to use metaphorical language, which could be a way of coping with death. It may also be used to allude to a task they feel they need to accomplish, such as seeking forgiveness.
Common symptoms in this period also include physical changes, such as:
- Chronic fatigue
- Increased susceptibility to infections
- Fragile, easily-damaged skin
- General pain
- Prolonged, unexplained weight loss
- Difficulty swallowing
- Untreatable nausea
- Swelling of the abdomen, such as edema or ascites
Days Before Death Symptoms
In the days before death, a series of physiological changes will occur. Their pulmonary system will start to degrade and the will become congested, leading to a tell-tale “death rattle.” Their breathing will also exhibit fluctuations, as they may begin to respirate up to 50 times per minute or as little as six. When exhaling, they may “puff” their lips. They may also begin to cough more frequently, but in general, the congestion itself is painless.
During their last days, your loved one may begin to experience hallucinations in which they talk to people who aren’t there or who have also died. It is important to maintain a close eye on your loved one if they begin exhibiting these symptoms. There is no guarantee for how long they may have left, and some people pass through this process faster than others.
Related: Easing End-of-Life Suffering: Palliative Care for Late-Stage Illness
Some common symptoms those a few days from death experience include:
- A drop in blood pressure
- The body temperature changes frequently
- Skin changing color or becoming blotchy
- Erratic sleeping patterns
- Fewer bowel movements
- Less urination
- Decreased appetite and intake of fluids
48 hours before death
What is the most common symptom in the last 48 hours of death?
In the last 48 hours before death, the body goes through significant changes as it prepares to shut down. These signs can be subtle or more pronounced, and while not everyone will experience all of these, they are common indicators. Recognizing these signs can help loved ones provide comfort and support during this time.
- Drifting In and Out of Consciousness: Individuals may experience periods of deep sleep or be unresponsive, drifting in and out of consciousness.
- Changes in Breathing: Breathing may become irregular, with longer pauses, known as Cheyne-Stokes breathing.
- Cool Extremities: Hands, feet, and legs may feel cold to the touch due to reduced blood flow.
- Discolored Skin: The skin may develop a bluish or mottled appearance, especially on the hands, feet, and knees.
- Decreased Urine Output: Urine production may significantly decrease as kidney function declines.
- Weak Pulse and Low Blood Pressure: The pulse often becomes weak, and blood pressure may drop noticeably.
- Increased Restlessness or Agitation: Some individuals may become more restless or agitated, often moving or adjusting their bedding frequently.
- Congested Breathing: A rattling sound, known as the "death rattle," may occur due to mucus buildup in the throat.
- Loss of Appetite and Thirst: Individuals may lose interest in food and drink entirely, as the body no longer needs as much energy.
Last 24 Hours Before Death Symptoms
During the last 24 hours of your loved one’s life, much of your loved one’s time will be spent sleeping. While awake, they will have difficulty interacting with you because many of their senses may be failing. However, their hearing should remain, and may be the only way they can experience the world. You can use a normal speaking voice when talking to them. Many of the physical changes they have experienced for the past few months will become more pronounced.
- A sudden burst of energy that slowly fades
- Their skin becomes increasingly mottled and blotchy, especially on the hands, feet and knees.
- Further drop in blood pressure
- Inability to swallow
- Less urine
- Increased restlessness, due to a lack to oxygen to the limbs
- Labored breathing
- Increased congestion, including possible fluid secretions
What happens 24 hours before death?
1. Changes in Breathing Patterns
Labored Breathing: Breaths may become irregular, with periods of rapid breathing followed by pauses (called Cheyne-Stokes breathing).
Congestion: A "death rattle" sound may be heard due to the buildup of mucus in the throat.
2. Decreased Appetite and Thirst
People often stop eating and drinking as the body's need for energy declines.
The mouth may become dry; moistening the lips can provide comfort.
3. Decreased Urine Output and Bowel Movements
Reduced kidney function leads to less frequent urination, and urine may become dark in color.
Bowel movements may stop, and incontinence can occur as the body’s functions slow down.
4. Lower Body Temperature and Skin Color Changes
Hands and feet might feel cool to the touch, and skin may take on a bluish or mottled color, especially on the extremities, due to reduced blood flow.
5. Drowsiness and Unresponsiveness
Individuals may become increasingly drowsy, drifting in and out of consciousness.
They may stop responding to external stimuli or become unresponsive.
6. Mental Confusion and Disorientation
Confusion, hallucinations, or talking to people who aren’t present may occur as the brain’s activity decreases.
Loved ones may appear to be interacting with people or things not seen by others.
7. Restlessness or Agitation
Restlessness or agitation can occur as the person may feel discomfort or have difficulty getting comfortable.
This may involve movements like pulling at bedding or seeming distressed.
8. Reduced Pulse and Blood Pressure
Heart rate often becomes weaker, slower, or irregular.
Blood pressure may drop significantly as the body prepares to shut down.
9. Increased Sleep or Loss of Consciousness
Most people sleep much more in the final hours or may lose consciousness altogether, remaining in a coma-like state until death.
10. End of Breathing and Heartbeat
Eventually, breathing stops, and the heart ceases to beat, marking the moment of death.
Hours Before Death Symptoms
In the final hours of life, your loved one’s body will begin to shut down. Their circulatory and pulmonary systems will slowly begin to fail. This may lead to falling body temperatures, but may also cause sudden outbursts. Your loved one will also experience greater difficulty interacting with the outside world. They may not be able to see you and may be unresponsive when you try to communicate with them. However, their hearing may yet remain intact. They may still be able to understand you, even if they cannot respond.
Some symptoms a person may experience during this time include:
- Glassy, teary eyes that may be half-opened
- Cold hands
- Weak pulse
- Increased hallucinations
- Sleeping and unable to be awoken
- Breathing is interrupted by gasps, or may stop entirely
Related: How to Cope With Anticipatory Grief During the Hospice Process
How to Tell When Your Loved One Has Passed
Eventually, your loved one will pass away, but it can be difficult to tell at first if this has happened. It’s not uncommon for a person to be unresponsive throughout the dying process, and it is easy to think that your loved one is simply asleep or unconscious when in fact they have died. If you suspect this is the case, call your hospice nurse, who can provide you with further instructions. Special procedures must be followed when removing our loved one’s body from your home.
Here are a few tell-tale signs that indicate when your loved one has passed away:
- They begin to gasp, then slowly take several more breaths relatively far from one another
- Their eyes and mouth open
- They cannot be awakened
End of Life Care Through Your Loved One’s Dying Process
Hospice care allows you to share your loved one’s most difficult journey with them, which can make it easier for you and them to obtain closure. Providing a high quality of life should be your main focus, which may be easier early on when you can still participate in a range of activities together. To properly care for them later in the dying process, make sure they are hydrated and fed without forcing anything on them. It will be normal for your loved one to become somewhat dehydrated during their final days. You may also have to clean them and move them to avoid bedsores.
Maintaining good communication with your loved one can help you provide them with the best possible support during their last days. In doing so, you may find that you both may want to spend time alone. This can help both of you cope with the dying process and allow you to better appreciate the time you have together. Your loved one can also let you know of any medical care they wish to receive or refuse should they become unresponsive.