What Happens When Someone Dies at Home With Hospice?

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Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

Hospice is an underutilized, supportive, and compassionate service for people who are dying. It also is a valuable service for the family members and close loved ones of the person receiving hospice care. Most people would rather be in the comfortable and familiar surroundings of their home at the end of life, and hospice makes that possible. 

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Deciding when to start hospice care can cause much anguish, upheaval, and disagreement among family members. It can be very hard to accept that a loved one has decided to forgo any preventative or life-saving treatments because of a terminal illness. Even the patient themselves may be uncertain about whether to discontinue treatment and allow nature to take its course. Having a frank and open discussion with a healthcare provider is a good place to start.

Once you have decided to start hospice in your home, be aware that hospice does not provide 24-hour care (although there is always a hospice nurse on call 24 hours a day). There may be tasks that the family or privately hired caregivers need to take on to keep someone comfortable and safe. Here’s what happens when someone chooses to retain hospice care as they prepare for the end of their life.

1. The Hospice Team

When someone has hospice at home, a team is assembled dedicated to caring for that person. Hospice is not 24-hour care, so you may need to augment care with private caregivers. The hospice team consists of the following professionals:

Physician

When someone decides to go on hospice, they usually give up their primary care physician. The reason for this is because most physicians don’t specialize in hospice. They focus on treatment. A hospice physician manages and monitors end-of-life care and supervises the team. A physician’s order is required for administration of pain medications and to re-certify someone for hospice if needed.

Nurse

The hospice nurse is the focal point of care. The nurse coordinates care and reports to the physician. Hospice nurses are skilled at recognizing pain, understanding comfort care, and managing the team. A nurse is on call 24 hours a day. If temporary hospitalization is required to manage symptoms, the nurse can make those arrangements.

Chaplain

For religious people, and even those who aren’t, a chaplain is available for anyone on hospice. Their purpose is to help people through processing what it means to die and the emotions that come with that. Even people who are atheist or agnostic use the services of a non-denominational chaplain. 

Social worker

Social workers on the hospice team provide counseling when needed to the patient and also the family. The social worker also helps coordinate medical equipment, connect the family to resources, and provide education about the hospice process.

Aides

Aides help bathe and toilet the patient, and change briefs. Aides also help with comfort care by keeping the patient’s lips moist and providing water and food if it is desired.

Volunteers

Volunteers are an essential part of the hospice team. They read to the patient, or engage in conversation. Sometimes specialized volunteers come in, such as a music thanatologist, who focuses on playing calming and soothing music to help a patient’s nerves.

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2. Continuous Assessment and Monitoring  

The focus of hospice is to make the patient as comfortable as possible during the dying process. This entails constant monitoring of how someone feels when they often can’t express themselves. Hospice nurses have expertise at recognizing when someone is in pain or discomfort and addressing it immediately. Some of the usual symptoms of distress are:

  • Agitation. Sometimes agitation means someone is in pain. The hospice nurse can adjust pain medication to alleviate suffering. 
  • Bowel/Bladder monitoring. Patients may suffer the loss of bowel and bladder control, meaning frequent changes of protection and watching for infections. Urinary infections can be treated under hospice since the treatment of an infection can be considered comfort care.
  • Preventing bedsores. Turning someone to prevent bedsores or using an alternating air mattress.
  • Arranging for medical equipment. Hospice team members can ask for a hospital bed and other durable medical equipment that is covered by Medicare. For example, if breathing becomes uncomfortably labored, short-term oxygen use can be ordered.
  • Thirst and hunger decrease. It is up to the family how to handle thirst and hunger. Most families opt to offer food and drink if wanted, but artificial hydration is discouraged while being treated as part of hospice care.

3. Preparing the Family for Death

Preparing everyone for the death of a loved one is a continuous process. Often there are family members out of town who have to make arrangements when death is imminent. It can be distressing to see a loved one in pain and discomfort, and the natural tendency for many is the desire to treat what is wrong.

If the family decides to pursue treatment outside of hospice, hospice will discharge your loved one. It is rare, but sometimes people get better on hospice and voluntarily decide to discharge from hospice and pursue traditional avenues of medical treatment again. The hospice team educates the family on what to expect, from signs and symptoms of the dying process to how to treat and control pain. No one can predict when someone will die, but the hospice team has experience enough to know when the time is near.

4. Knowing the Signs that Death is Near

Knowing the signs that death is near allows the hospice team to inform the family and also gives the family time to gather. Everyone is different, but here are some common signs that death is near.

  • A person is in and out of consciousness and sometimes in a coma. It is common for a dying patient to lose consciousness, and never regain it at the end of life.
  • Lack of interest in food and water. People can live quite a while without food, but not without water. Unless someone has significant water retention, most people can’t live without water for three days.
  • Decreasing strength and energy is common. Most people spend their last days or weeks bed-bound because they don’t have the strength or stamina to stand or walk. 
  • There might be increased agitation and confusion. People may seem delusional or see things that you can’t see.
  • Increase in perspiration and changes in breathing patterns.
  • Their skin may turn purple and mottled. 

5. Notifying the Family if Death is Near

The hospice team has a tough, but necessary job of notifying the family that death is near because they could be wrong about the timing. If family members have to make long-distance travel arrangements, a false alarm can wreak havoc on someone’s life. But generally, the team would rather be safe than sorry. If the nurse feels like the end is near, they will notify the family based on their clinical judgment.

If you have been with your loved one during the entire process of dying, you have been preparing to understand and expect certain physical changes. You may have also experienced anticipatory grief and perhaps even had significant conversations with the person who is dying.

When family members or friends have not been there and are coming from a distance, the experience can be a shock. Be prepared to provide emotional support during this time. It is also not that unusual for families to disagree about care and whether it is time to let someone go. There might be family members who did not want hospice for their loved ones. Turn to the hospice team as much as you can when this happens since they have the experience of dealing with these situations and can calmly explain what is going on.

6. What Happens When Someone Dies

When someone dies, a hospice staff member may or may not be present. As part of starting hospice, all mortuary information is required so that when a person dies, everyone knows who to call. The first call is to the hospice nurse who will come to the home to verify that the person has died. 

Once the nurse has confirmed the death, they will notify the medical director of hospice. The hospice nurse will fill out all the necessary legal paperwork to obtain death certificates later. The mortuary will come to pick up the body when you and your loved ones are ready.

It is reasonable and customary for families to want to spend some time with the body. If you or other family wish to stay with the body for a couple of days or more, most states will allow this. This leaves time also for any religious, cultural rituals and for family members who may not have made it in time to be able to see their loved one.

7. Taking Care of the Family After the Death of a Loved One

To say that emotions will run high following the death of a friend or family member is an understatement, as not all of the emotions will be sadness. There could be anger, resentment, exhaustion, regret, and guilt. In the short term, reach out to the hospice social worker or chaplain to talk about your feelings.

Don’t hesitate to engage in grief counseling or talk with someone else about your feelings. Grief is normal to experience for a long time after someone’s death.

What Happens When Someone Dies at Home on Hospice

Dying brings a rush of emotions, thoughts, and feelings. Being at home allows a more peaceful transition for everyone. Hospice makes the process easier to understand, accept, and appreciate. Team members providing hospice care can offer support, guidance, and compassion for all those affected as a close loved one dies at home.

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