One of the hardest portions of the job of a hospice nurse is to identify when a patient has two weeks of life left to live; this can be especially difficult at facilities going through staffing shortages, leading to inconsistent caregivers with little to report on a patient's change of condition verbally. Since being aware of the velocity of declines is extremely important, let's cover an area that we in hospice (nurses, families, and caregivers alike) can keep an eye on in terms of identifying terminal , which is often a key indicator for one week or less of life.

Signs and symptoms of terminal can vary among individuals, and hospice and palliative care specialists need to be aware of them.

How to Recognize Terminal Restlessness in Hospice Patients

Terminal restlessness is a common phenomenon in life's final stages. It is characterized by a range of physical, mental, and emotional changes that indicate the patient is nearing death. Terminal restlessness can be challenging for both the patient and their caregivers, as it may cause , distress, and confusion. Therefore, hospice and palliative care specialists need to be able to identify and manage terminal restlessness effectively.

What is Terminal Restlessness?

Terminal restlessness is a term for a state of increased agitation, movement, and confusion that occurs in some dying patients. It is not a specific diagnosis but rather a collection of signs and symptoms that indicate the patient's condition is deteriorating rapidly. Terminal restlessness can occur any time during the dying process, but it is more common in the last week or days of life.

Terminal restlessness can have various causes, such as uncontrolled pain, , , infection, constipation, or oxygen deprivation. However, sometimes the cause is unknown, and it may be related to the patient's psychological or spiritual state. Environmental factors, such as noise, light, temperature, or the presence of visitors, can also influence terminal restlessness.

How to Spot Terminal Restlessness?

Terminal restlessness can manifest differently in each patient, and it may fluctuate in intensity and duration. Therefore, it is essential for hospice and palliative care specialists to closely observe and assess the patient for any changes in their behavior, mood, or physical condition. Some of the signs and symptoms of terminal restlessness that are often missed or overlooked are:

  • Falls and attempts to get up/get out: The patient may become restless and try to get out of bed or their wheelchair, or they may fall or injure themselves while moving. This may indicate that the patient is feeling unsettled, anxious, or trapped or has a physical need that is not being met.
  • Tachycardia of unknown origin: The patient's heart rate may increase significantly without a clear cause, such as , infection, or pain. This may indicate that the patient is experiencing stress, fear, or emotional turmoil or that their body is shutting down.
  • Confusion and agitation: The patient may become disoriented, confused, or forgetful, and they may have difficulty concentrating or following instructions. They may also become agitated, irritable, aggressive, resist care, or lash out at others. This may indicate that the patient is losing cognitive function or that they are experiencing delirium, , or paranoia.
  • Emotional outbursts: The patient may express strong emotions, such as anger, sadness, or fear, and they may cry, scream, or curse. They may also have mood swings, or they may become apathetic or depressed. This may indicate that the patient is coping with grief, guilt, or regret or that they are facing their mortality.
  • Unusually calm behavior: The patient may become unusually quiet, withdrawn, or detached, showing little interest in their surroundings or loved ones. They may also appear peaceful, serene, or resigned. This may indicate that the patient accepts their situation or disconnects from their body and environment.
  • Groaning or calling out: The patient may make noises, such as groaning, moaning, sighing, or calling out for someone or something. They may also move or twitch involuntarily or have muscle spasms or seizures. This may indicate that the patient is experiencing pain, , or distress or communicating with someone or something that is not visible to others.
  • Agitation accompanying delirium: The patient may experience delirium, which is a state of severe confusion that can cause restlessness, , or rapid mood changes. Delirium can have various causes, such as uncontrolled pain, , infection, or oxygen deprivation. Delirium can also be a sign of the patient's declining brain function.

How to Manage Terminal Restlessness?

Terminal restlessness can be distressing for both the patient and their caregivers, and it can interfere with the patient's quality of life and comfort. Therefore, hospice and palliative care specialists need to manage terminal restlessness effectively and compassionately. Some of the strategies that can help are:

  • Identify and treat the underlying cause: If possible, the hospice and palliative care team should try to find and address the cause of the patient's restlessness, such as pain, infection, dehydration, or medication side effects. This may involve adjusting the patient's medication, providing hydration, treating , or relieving constipation. However, the cause is sometimes unknown or irreversible, and the focus should be on providing comfort and symptom relief.
  • Provide a calm and comfortable environment: The hospice and palliative care team should ensure that the patient's environment is conducive to their well-being and relaxation. This may involve reducing noise, light, or temperature or providing soothing music, aromatherapy, or massage. The team should also respect the patient's preferences and wishes, such as who they want to see, what they want to do, or where they want to be.
  • Offer emotional and spiritual support: The hospice and palliative care team should provide emotional and spiritual support to the patient and their loved ones and help them cope with the patient's restlessness and impending death. This may involve listening to the patient's feelings and concerns, validating their emotions, offering reassurance and comfort, or facilitating communication and closure. The team should also respect the patient's beliefs and values and provide spiritual guidance or counseling if requested.
  • Use medication if necessary: If the patient's restlessness is severe or unresponsive to other interventions, the hospice and palliative care team may consider using medication to sedate the patient or reduce their agitation. This may involve using benzodiazepines, antipsychotics, opioids, or other drugs that can calm the patient's nerves, ease their pain, or induce sleep. However, the use of medication should be carefully monitored and adjusted, as it may have side effects or risks, such as respiratory , addiction, or loss of consciousness.

Reversible Restlessness

Let's remember there's reversible restlessness (constipation, drug allergies or interactions or overdosing, infection, low oxygen saturation not related to the dying process, urine retention) — one should attempt to reverse — as well as terminal restlessness (non-reversible, a sign of the end of life is imminent).

Conclusion

Terminal restlessness is a common and complex phenomenon that occurs in some patients who are dying. It is characterized by a range of physical, mental, and emotional changes that indicate the patient is nearing death. Terminal restlessness can be challenging for both the patient and their caregivers, as it may cause discomfort, distress, and confusion. Therefore, hospice and palliative care specialists need to be able to identify and manage terminal restlessness effectively and compassionately. By doing so, they can help the patient achieve a peaceful and dignified death.

Resources

The Importance of Caregiver Journaling

Reporting Changes in Condition to Hospice

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

Surviving Caregiving with Dignity, Love, and Kindness

Caregivers.com | Simplifying the Search for In-Home Care

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My Aging Parent Needs Help!: 7-Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver's Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It's Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout, And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I've Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death.”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side, A Guide for Caring for the Dying at Home

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