Hospice 101: Stages of Hospice Care
5

Final Days

There will likely come a time when you begin to notice telling changes in your loved one’s condition that signal their final days. During this stage, the body and its systems begin to shut down. Talk with your hospice team about what to expect.

What are some common symptoms during the final days of life?

  • Terminal Restlessness and Agitation.  An unfortunate aspect of the dying process is restlessness or agitation. Your loved one may try to get out of bed even when they can’t stand. They may try to take off their clothes, pull off their oxygen or grab at the air around them. Further medications and treatments can be administered if needed. For example, many people in hospice care become agitated and restless when they are unable to verbalize that their bladder is full and failing to function properly. A foley catheter may be required to help keep the bladder drained.
  • Terminal Secretions.  Sometimes referred to as the death rattle, terminal secretions are probably the most startling and hardest to-process end-of-life symptom families will experience. Even with medication, it's a very difficult symptom to control. It occurs when mucous and saliva accumulate in the mouth and throat. It may sound as though your loved one is drowning, but this is not the case. Repositioning your loved one on their side or suctioning secretions from their mouth with equipment the hospice provides can help minimize the symptom.
  • Not Waking Up.  Your loved one may sleep all the time or may not be able to be roused at all.
  • Not Eating or Drinking.  At this stage in the dying process, the body no longer needs nourishment.
  • Elevated Temperature.  The body becomes unable to regulate temperature, and temperature may rise. The hospice nurse can offer medications or treatment to help reduce a high temperature.
  • Irregular Breathing Patterns.  Your loved one may go through periods where it seems that they do not take a breath, followed by an irregular breathing pattern or their breathing may become very rapid. Talk with your hospice team if this becomes a concern.

How do I know if my loved one is receiving the best care in this final stage?

In their final days, patients are often unable to verbalize their needs. The hospice team will assess comfort level by your loved one's overall look and demeanor. Are they breathing without difficulty? Are they moaning? Are they trying to climb out of bed? If your loved one is not doing these things, then they are likely in a comfortable and restful state. 

While it’s understandable to equate a longer dying state with suffering, it's not always accurate to do so. ■

FAQs

Click on a frequently asked question below to learn more.

When should I call family to the bedside?

Hospice providers are asked this question repeatedly. The best answer is sooner rather than later.

It’s nice when family and friends are able to visit while their loved one is still alert. Encouraging out-of-town family to visit during this time may be wise. Many family members want to be at their loved one’s bedside at the time of death.

When significant signs of decline begin to show, it’s best at that point to notify anyone who desires to be at the bedside.

Why did my loved one suddenly wake up?

Some people nearing the end of life may have a surge of energy where they become more alert. This often catches caregivers and family off guard. This surge of energy or alertness is not an indication that the person is getting better. It is just another part of the dying process.

How do I say goodbye?

There really is not one right way to say goodbye. Some caregivers and family members use the time in hospice to express their thoughts and feelings directly to their loved one.

Although the person receiving hospice care may not, in some cases, be able to respond, it’s best to assume that they can hear and sense what is going on around them.

It’s important to keep the care environment as calm and peaceful as possible. It’s OK to hold a hand, but it’s a good idea to limit excessive physical contact. At this stage, some become very sensitive to touch.

How much longer will my loved-one live?

While a physician or hospice nurse may be able to give a general idea of how much time a person at the end of life has remaining, it’s impossible to know for sure. Therefore, if there are things the family or person needs to take care, it’s best to do so sooner rather than later.

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