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What Happens When a Hospice Patient Dies at Home?

Doctor explaining to caregivers hospice care at home | VITAS

Active Dying

Death is a process that begins long before we notice the signs of “active dying.” Your loved one may never experience some of these symptoms or may experience them sooner or later than indicated. This list offers an approximate overview of when symptoms generally appear or when they may worsen.

Someone from your VITAS team will talk to you about what to expect and what to do at the time of death. Your team will know your loved one’s religious or cultural preferences. One of them will “attend” the death with you if at all possible. Someone will arrive shortly after the death to help with details and make sure family members are all right.

VITAS can bring hospice services to you or your loved one: Bring Hospice Home

What to Expect

Death is a natural event. There are no rules on how to die or how to witness a loved one’s last moments—or last months. Some family members may attend early or frequently in the process, then not be there for the death itself. Be confident that your presence remains with your loved one. Dying unfolds over many moments.

The following information is not intended to predict what will happen, but to give you an idea of what to expect or where your loved one may be in his or her dying process, in the hope that you can make the most of your time together. 

Possible Symptoms as Death Draws Near

Months before death:

  • Increased occurrence of infections
  • More frequent hospitalizations; less time between hospital trips
  • Multi-system complications
  • Treatments less effective, or the patient has less interest in treatments
  • Loss of interest in food; decrease in appetite; weight loss
  • Decreased strength, stamina or mobility
  • Decreased interest in activities or conversation

Weeks before Death:

  • Sleeping more; withdrawn
  • Shortness of breath
  • Increased confusion
  • More medication required to manage symptoms
  • Loss of control of bowel or urine
  • Less able to tolerate food

Days before Death:

  • Decreased intake of food and fluids
  • Dry mouth
  • Restlessness
  • Labored breathing
  • Fever
  • Darker urine; reduced output

Hours before Death:

  • Purple mottling of skin
  • Twitching
  • Perspiration
  • Coma
  • Breathing changes

Caring for Yourself 

If you have provided care for a long time and have watched the gradual decline of the person you love, you’ve probably become worn down. Maybe you neglected your own health to care for him or her. If your loved one died suddenly, you likely went through a period of shock and stress. In either case, you’re probably depleted—physically, mentally, emotionally and spiritually.

And you may still have a lot to take care of, including new tasks you never had to do before. Depleted as you are, you may have people other than yourself to care for—fragile or elder adults or children. You want to help them, even if it means putting your needs on the back burner, again.

Bereavement Support

If you need help, call your VITAS bereavement manager. Bereavement support is available for at least a year after the death of your loved one. Draw on our experience walking through this with others to gain the support you need.

Related Articles:

Feelings and Reactions to a Significant Loss

Guidelines for Helping Grieving Children

Learning to Accept the Unacceptable