Final weeks and days: What to expect

By: The Canadian Virtual Hospice Team
 
As serious illness progresses or as the body weakens with age which may include multiple diseases, a person will experience changes. These changes can affect how a person’s body functions, how they communicate, think, and behave. Knowing what to expect can help you plan and prepare as the person’s death nears. If the person is at home, the article Remaining at home: What to consider will provide you with additional information. 
 
See: Topics | Decisions | Remaining at home: What to consider
 

How much time is left? 

As illness progresses, it can be hard to predict how long the person will live. Each person’s situation is different and in the final months and weeks, diseases may follow different paths. Your healthcare provider can explain how the illness will progress and what to expect.  
 
A common measure used in cancer illness to predict how long a person may live, is the momentum of change. It refers to how quickly a person’s health is declining. If the person’s condition declines from month to month, this generally indicates that the person has months left to live. If changes happen from one week to another, it may mean there are only weeks left. The momentum of change is a general guideline only.
 
With some diseases, the future can be more difficult to predict, with periods of decline followed by improvement and stability. 
 
Regardless of the disease, sometimes complications develop resulting in a more rapid decline than expected. With this in mind, it may be helpful to address goals or tasks that must be accomplished while the person is still able to do them. 
 

Expected Changes: Final months and weeks

Decreasing energy  

A person’s overall energy and strength declines as their disease advances. It is common for a person to spend increased time in bed and sleep for longer periods of the day. In the last few days of life, some people can change quickly from being reasonably independent, to sleeping all of the time.  

Food and fluids 

It’s normal for appetite and thirst to decrease. This can be difficult for family and others who see providing food as an act of love. There is a point at which the body is not able to use the nutrients in food the way it used to, often resulting in weight loss and tiredness. Forcing food or fluids may result in nausea, choking, or a bloated sensation. The focus of care shifts to “eating for comfort”. Some patients may choose to eat for comfort knowing they risk choking.   

Medication concerns

Trouble swallowing medications is common as illness progresses. Some medications and supplements become less helpful and can be stopped. For a number of medications, there are different ways they can be given if swallowing isn’t possible. These may include:
  • Liquid drops given under the tongue or the inside of the cheek
  • Nasal sprays
  • Through a special “butterfly” needle inserted under the skin 
  • Patches applied to the skin 
  • Rectal suppositories
See also: Help with Medications
 

Changes in the final weeks and days  

Regardless of the type of illness, the last days of life generally look very similar. If significant decline occurs from one day to the next, there may be days left. If changes are occurring from hour to hour, then there may be only hours left. It’s important to remember that complications can result in a more rapid decline than expected.
 
Dramatic changes in the person may cause concern for those who haven’t seen them for some time. Preparing the visitor for these changes can be very helpful. This is particularly important for children. As death nears, the person who is ill may be unconscious and unaware of the changes. 
 
Rapid changes in condition
 
A person’s condition can change quite significantly from one day to the next, or even during the course of the day. Individuals can go from looking stable to seeming as though they have only hours to live, or from appearing very sick to looking surprisingly well. 
 
Circulation and skin 
 
The flow of blood and oxygen through the body lessens, causing the hands and feet to feel cold and a patchy purplish colour on the skin. This typically occurs on the hands, feet, and face. Turning down the lighting in the room can make the colour changes less obvious.
 
Bowel and bladder function 
 
As desire and need for food and drink decreases, less urine and stool are produced. Having a bowel movement every three days is a guide. Managing constipation may be less of a priority in the final few days. If urine isn’t passing, this can be very uncomfortable. A healthcare provider may insert a catheter to ensure the bladder continues to empty.
 
Breathing changes  
 
Changes in breathing is the most telling sign that death is near. A series of short breaths and long or short pauses indicates death is close. Breathing may be raspy due to a build-up of fluid in the throat or lungs. This may be hard to listen to but breathing rate and oxygen levels don’t indicate distress. If the person’s face is calm and their body is still, they aren’t in distress. Sometimes medications can help dry some of the fluid. Turning the person may also help.
 
Confusion and distress
 
As the person weakens, the brain is also affected. Alertness decreases and confusion is common. Those who are confused may feel frightened or even threatened by people and things around them. Trying to correct the person often adds to their feelings of being threatened. 
 
Confusion can lead to many issues:
  • It may be very upsetting for family and friends to see and hear the person act out of character and perhaps say things that are hurtful. 
  • Children or grandchildren may be afraid to visit, and family may feel that they have already lost the person.
  • It may be difficult to give medications and provide care.
  • There is a risk that people will stop seeing the person as worthy of respect, especially if they think their behaviour is embarrassing or undignified. 
  • There may be concern about possible self-harm or harm to others.
Most people would feel badly if they knew how they were acting. It is important to continue to provide support. Healthcare providers have ways to treat confusion and distress.
 
Visions
 
Sometimes people see visions of relatives who have either died or who aren’t present. If the experience comforts the person, then there is little benefit to treating it with medications. 
 
An unexpected rally 
 
Sometimes a person becomes suddenly alert and interacts with those around them. While this “rally” seldom lasts very long, it may provide an opportunity to share thoughts or important feelings. These random periods of alertness can be confusing to families who find false hope that the person is “getting better” or who question the knowledge of healthcare providers. These rallies are usually very short and are often followed by continued decline. Supporting each other is the most helpful approach. 
 
Speaking to the person who is dying can be very meaningful, regardless of whether they can respond. 
 

Difficult choices 

Difficult choices may arise as illness progresses. They might include:
  • Whether to continue receiving food or fluids
  • Whether to treat infections
  • If transfer to a health facility is required 
Ideally, the person who is ill makes these choices through an advance care plan or healthcare directive. If the person does not have an advance care plan and can no longer make decisions for themselves, or if they prefer that someone else makes these decisions, a family member or a substitute decision-maker chosen by the person, makes decisions on their behalf. 
 
If you are making these decisions and aren’t sure what their choice would be, consider asking yourself, “what would the person want to be done if they were able to tell me?” rather than “what do I want to be done?” It may feel as though these decisions could be the difference between life and death. However, as the person cannot survive the illness, no decision will change that.   
 

Being at the bedside 

Friends and family may feel uncertain about what to do and say at the bedside. Being present is usually more important than what is done or said. Continue to visit and do what you normally do. Knowing that those they care about are there and supporting each other may comfort the person who is dying. Reading to the person, gently rubbing lotion into their hands, playing their favourite music, or placing warm blankets on the feet are ways to provide comfort. 
 
Some people may find this quiet time difficult as there might be little left to do for the person, often for the very first time. The anticipatory grief that often starts at diagnosis, may be felt more strongly. Sometimes this leads the family to think that the patient is suffering when it’s their own grief they are experiencing. 

Can the dying person hear me?

If the dying person is not conscious, those who would like to say something should do so. There is often no way to know how much the person can hear or understand. However, hearing is often the last sense to be affected by anaesthetic for surgery and people in comas often report hearing conversations and sounds. Even if the person is conscious, having a conversation may be too much to expect of them.
 

Not being at the bedside 

Sometimes being present as death nears isn’t possible and some people choose not to be present. For those who wanted to be present but couldn’t, it may help to remember that feeling connected doesn’t require presence. Whether death occurs after just stepping outside of the room, or you’re in a different city or country, the physical distance between you and the person does not diminish your relationship and the closeness that is felt.
 
Healthcare providers have commented that in some cases family and friends note that the person was very independent and may have wanted to take the final step alone. Some find this comforting.  
 

When death occurs

What causes death to occur?   
 
The decline in the last few hours and days usually affects the whole body, even if the illness is in a specific organ or part of the body. Often, in the last day or two, people develop an infection in the lungs (pneumonia), because they are too weak to cough and clear the fluid that the lungs produce. Antibiotics seldom help because of overall frailty and limits to the immune system. Organs start to shut down and the heart eventually stops because it cannot function without the other organs. Performing cardiopulmonary resuscitation (CPR) won’t help because the reason the heart stopped cannot be fixed.
 
How should I react when the person dies?
 
Sometimes people worry about how they will react when the person dies. They fear that they might lose control or that they may not be strong enough to handle the situation. Remember, we are human, and when we are hurting, we express our pain in whatever way fits us as long as we do not harm ourselves or others. Society often places a high value on holding ourselves together and being “strong”. However, expressing feelings is not a sign of weakness. Similarly, not showing emotion does not necessarily mean we don’t have feelings. People who don’t show emotion may be feeling overwhelmed or even stunned when the death happens. We do what we need to do, when and how we need to do it.
 
After the person has died
 
After death occurs, you may want to take time to reflect, say a few words, touch the person’s body, or say some final goodbyes. Or you may prefer not to and that’s ok too. It is important to try to provide time and space according to everyone’s needs and cultural practices. Some may want to touch the body, and others may not. Some may cry loudly, and some may be silent. Some may need to leave the room while others need to spend time with the body. Everyone has their own ways of expressing their grief. 
People may feel a sense of relief when someone dies, and feelings of guilt may accompany this. It is normal to want the person to be free from their illness and to begin to think about getting some order back into day-to-day life. There is no right or wrong way for people to feel.
 
Grief and loss
 
Grief is a natural and normal response to loss. Everyone grieves in their own way and in their own time. Often, we don’t understand all of the ways grief can affect us and those around us. The Programs and Services feature can direct you to find grief supports in your community. Canadian Virtual Hospice offers MyGrief.ca, a free online tool to support you in your grief and loss. MyGrief.ca can help you understand and approach the challenges you may be facing. It can help you support others as well. 
 
KidsGrief.ca is a free online resource that helps parents, guardians, and educators to support children when someone in their life is seriously ill, is dying, or has died. It provides words, practical approaches, and helps build confidence to talk with and support children and teens in effective ways. 
 
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