What is Transitioning in Hospice?

Media portrays death as a quick transition. One moment you’re alive, the next, your eyes are closed and you’re dead. Flash in the pan.

‍

The reality is a bit different, as dying a natural death is a process. Someone who is dying tends to experience this process fully as a person. We’re talking physically, mentally, emotionally, and spiritually. However, as we all know transition is the final stage and ends in death. But what is the process like? And what happens when someone in hospice care “transitions” to death?

‍

What Does Transitioning in Hospice Mean?

In hospice, transitioning refers to the stage in the dying process when a person “turns a corner” and enters into “active dying.” This stage can last for hours or days, leaving caregivers feeling both rewarded and exhausted during the experience.

‍

Death, like birth, can be gritty. At this point in the journey, the hospice team serves as midwives to the dying and their caregivers–coaching and helping them move toward the most peaceful ending possible.

‍

The Signs That Someone is in the Transition Phase in Hospice

What does it mean when someone is transitioning in hospice? There are some telltale signs that encompass all aspects of your loved one when they are transitioning.

‍

Emotionally and socially, a dying person might withdraw more and more away from interests, activities, and even people. In transition, your loved one’s attention is typically focused on things you cannot see.  

‍

Mentally and spiritually, your loved one may be aware that death is near. But unfortunately, they might be too deep in the throes to fully discuss it with you. They may be trying to describe what they are experiencing, or may be asking for something they need for a peaceful death.

‍

Look for these signs and communications from your loved one as they transition.

‍

Psychological or Mental Signs of Transitioning

Altered thinking, confusing talk, and other mental changes, including:

• Unaware of  time, date, and place
• Bounces between alertness
• Suddenly awake or sleepy at times
• Agitation and restlessness
• Picking at their clothing or trying to get out of bed
• Talks about things that don’t make sense
• Talks about going on a trip
• Communicates with deceased loved ones

‍

If you think about death as a destination, it can help to understand why your loved one is preparing for travel or change. Trying to get out of bed may translate to “I’m getting ready to leave.” Agitation can signify unresolved issues and the need for consolation or forgiveness. Talking with loved ones who have died may bring them comfort, and it isn’t helpful or necessary to “reorient” them.

‍

Physical Changes During Transition

As a person approaches the transition stage, their body will exhibit physical symptoms of shutting down. Most people tend to sleep more; eat and drink less; and gradually become weaker and less active. Look for these physical signs that your loved one is transitioning.

‍

Skin changes, including:

• Changing body temperature

• running a fever and feeling hot and sweaty or feeling cold and clammy

• Changing body color

• looking pale or yellowish, translucent, having bluish nail beds, and blotches on extremities

 Bowel and bladder changes, such as:

• Decreased amounts of and darker urine
• Decreased amount and frequency of stool
• Loss of control (incontinence)

Breathing changes, including:

• Labored and difficult breathing
• Rapid and shallow breathing
• Irregular and uneven breathing
• Apnea–breathing pattern with pauses

Increased fluid build-up, such as

• Secretions that accumulate in the throat and mouth
• An audible “rattle” in the throat
• Swelling in the ankles and feet

Difficulty swallowing:

• Coughing, choking on small amounts of water and thin fluids
• Limited ability to take tiny amounts of water from a syringe (without a needle), suck on ice chips, and swallow “thickened” fluids or soft foods like pudding

‍

These physical changes naturally occur as the body shuts down and can no longer maintain the right temperature, circulation, or ability to adjust to changing oxygen and carbon dioxide levels.

‍

Much like a machine, bodies tend to give out after working for too long. People who are transitioning to death can experience increased weakness, decreased awareness, and loss of nerve and voluntary muscle control contribute to incontinence and difficulty swallowing.

‍

It may be hard to witness these changes, but the shutting down process is normal, and there are reasons for it.

‍

For instance, difficulty swallowing is the body’s natural way of saying “no more.” This can lead to a fever, which is a natural response to dehydration.

‍

As you might expect, dehydration is a common part of transitioning to death.There are benefits to dehydration, too. It causes a release of pain-relieving chemicals, leading to a mild euphoria; less fluid retention in the lungs, throat, and extremities; less internal pressure and swelling; and less urination. All of these changes promote comfort naturally.

‍

The End of Transition

When death is imminent, the dying person cannot respond in kind to their physical surroundings, and no longer needs the things that sustain life. For caregivers, this time marks the beginning of the “vigil” period, when you watch and wait and stay in contact with the hospice nurse.

‍

When death is imminent, your loved one:

• Will not respond to physical stimulation or voice
• Is difficult to rouse
• No longer needs anything by mouth
• Has a noticeable change in their breathing pattern

‍

Their eyes may be half-open, glassy, and unfocused. Their bowels and bladder may spontaneously empty.

‍

You will know that your loved one has died when they have stopped breathing for at least two to three minutes, and there is no heartbeat or pulse.

‍

What Can a Caregiver or Hospice Team Do to Help?

A caregiver can respond to their loved one in ways that promote comfort and lessen the intensity of their end-of-life process. You know your loved one. Your presence can be more reassuring to them than you will ever know. In the same way you console a child who is crying but can’t tell you why, you can touch and soothe.

‍

Assume your loved one can hear you. Offer words of love and forgiveness. Tell them it’s OK to go–that you will be fine. Please don’t ask them to stay or meet your needs in any way.

‍

During transition, the hospice team can help by doing what they do best. The hospice team knows and understands transitioning symptoms and communication styles of the dying. They can also normalize your experience and guide you through these natural changes happening  to your loved one.

‍

• Chaplains or spiritual directors help interpret your loved one’s communications. They can talk with you about any spiritual concerns you might have, such as hope, faith, and suffering. Likewise, any good chaplain can share and participate in any  religious or cultural practices based on your preferences.
• Grief counselors help you navigate anticipatory grief as you await and prepare for an impending loss and the fallout afterwards. They can explore conflicts or unresolved issues you may have with your dying loved one to mitigate a complicated grieving process.
• Doctors write orders for hospice medications to manage the patient’s symptoms. They are also available to help sort out difficult-to-manage symptoms.
• Nurses are on-call 24/7, and can provide pain and symptom management attuned to your loved one’s needs.
• Home health aides help keep your loved one clean and dry, in addition to giving caregivers a  break.
• Volunteers may join you in the vigil or give you a break by staying with your loved one while you rest.

‍

Understanding What It Means to Transition in Hospice

People tend to die the way that they live. For instance, people who have always been very logical may step incrementally through every symptom as the body slows down and ultimately stops working. Similarly, a very private person may wait to die until all loved ones have left the room. A lively, active person may appear to struggle for life until the final moment.  

‍

Knowing what happens during the transition to death can empower you and your loved one, which can mean all the difference in a significant time such as this.

‍

Sources

1. Callanan, Maggie and Patricia Kelley. “Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying.” Simon & Schuster, 14 February 2012. Print.