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Hospice Basics, Hospice at Home
September 25, 2023

End-of-Life Timeline: Clinical Signs by Stage

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Dying is a natural process accompanied by decrements in neurocognitive, cardiovascular, respiratory, and muscular function.

The dying process is highly variable and can last up to several weeks in some instances. The expression of clinical end-of-life signs varies substantially among patients, but a greater number of clinical signs present in an individual increases the likelihood of death.

End-of-Life Stages Timeline

Here is a breakdown of the different stages of the end-of-life journey:

Identifying the transition to imminent death is crucial for educating patients and families about the natural dying process. This information enables effective, compassionate decision-making and allows families to prepare for the passing of their loved one.

It's important to update the care plan to reflect the patient's changing status, including any required clinical visits. A higher level of care may be necessary in moments of crisis or when symptoms are uncontrolled.

The tables below provide a general overview of each stage of death.

Months Before Death

During this phase, which occurs one to three months before death, patients may experience decreased appetite, increased sleepiness, ambivalence toward their surroundings, heightened pain and nausea, and visible weight loss. Emotional changes may lead to increased withdrawal, reduced activity, decreased communication, and introspection.

Clinical Signs Management Techniques
Decreased appetite
  • Offer smaller, more frequent meals
  • Provide foods high in nutrition
  • Use favorite foods to stimulate appetite
  • Discuss dietary preferences with patient
Increased sleepiness
  • Allow for sufficient rest and sleep
  • Ensure comfortable sleeping environment
  • Encourage relaxation techniques
Increased sense of ambivalence to people or the environment around them
  • Respect patient’s need for solitude
  • Provide emotional support and reassurance
  • Encourage open communication
Increased pain and nausea
  • Adjust pain medications as needed
  • Use anti-nausea medications as prescribed
  • Provide comfort measures
Increased risk of infections
  • Maintain hygiene and infection control
  • Monitor for signs of infection
  • Educate family on preventative measures
Noticeable weight loss
  • Address modifiable contributors to weight loss
  • Recognize nutritional supplements are generally not helpful
  • Monitor emergence of skin breakdown

Weeks Before Death

As the end of life nears, extreme fatigue, confusion, and social withdrawal become more pronounced. Patients may engage in life review and focus on funeral planning, revealing their emotional state.

Clinical Signs Management Techniques
Even greater desire to sleep
  • Allow patient to rest as needed
  • Create a comfortable sleeping environment
  • Educate family about changes in sleep pattern
Stopping all eating
  • Monitor for signs of distress or discomfort
  • Respect patient’s choices regarding eating
  • Offer small sips of fluids to prevent dehydration
  • Provide mouth care to alleviate dry mouth
Increased restlessness
  • Assess for underlying causes of restlessness
  • Provide gentle repositioning for comfort
  • Offer relaxation techniques to calm patient
Increased congestion
  • Elevate patient’s head to ease breathing
  • Use a humidifier to moisten the air
Increased levels of confusion
  • Provide clear and simple explanations
  • Use visual aids to aid communication
  • Create a calm and quiet environment
Increased hallucinations or visions
  • Offer reassurance and emotional support
  • Validate patient’s experiences with empathy
  • Engage in non-confrontational conversation
Changes in vital signs
  • Focus on the patient’s overall well-being and not specific vital signs
  • Educate family on expected changes
  • Provide comfort measures for temperature fluctuations

4-6 Days Before Death

This stage occurs four to six days before death. It is characterized by intensifying emotional and physical symptoms.

Clinical Signs Management Techniques
Abnormal vitals
  • Educate family on the significance of abnormal vital signs and their implications
  • Discontinue blood pressure medications as appropriate
Decreased level of consciousness
  • Educate family on the signs of decreased consciousness and somnolence
  • Ensure patient’s comfort and position for sleep or rest
  • Encourage family to speak calmly and reassuringly to the patient
Dysphagia of liquids
  • Educate family on the difficulties of swallowing liquids and potential risks
  • Provide strategies to maintain oral moisture, such as wet sponges, oral swabs, crushed ice, and lip balm
  • Discuss alternatives for hydration

2-3 Days Before Death

As the end approaches in two to three days, the active stage of dying begins. Common symptoms include unresponsiveness and a significant drop in blood pressure, indicating impending death.

Clinical Signs Management Techniques
PPS 20% or less
  • Educate family on the patient's condition
  • Provide guidance on providing care and assistance
  • Offer strategies for comfort and support
Peripheral cyanosis
  • Educate family on peripheral cyanosis
  • Keep patient comfortable and warm
  • Monitor closely for changes in color
Decreased response to visual stimuli
  • Educate family on patient’s decreased response to visual stimuli
  • Maintain a calm and soothing environment
Drooping of the nasolabial fold
  • Educate family on significance of drooping of the nasolabial fold
  • Offer emotional support and comfort
Hyperextension of the neck
  • Educate family about the hyperextension of the neck and its potential implications
  • Provide positioning suggestions for comfort
  • Consider opioid pain relief if discomfort is present
Cheyne-Stokes breathing
  • Educate family about Cheyne-Stokes breathing and its normal occurrence at end of life
  • Provide reassurance and maintain patient comfort
  • Consider opioid use for managing dyspnea
Nonreactive pupils
  • Educate family on nonreactive pupils
  • Ensure patient's comfort and position
  • Provide emotional support
Decreased response to verbal stimuli
  • Educate family on nonreactive pupils
  • Ensure patient's comfort and position
  • Provide emotional support

Less Than 2 Days Before Death

In the final hours, patients exhibit specific clinical signs that indicate the approach of death.

Clinical Signs Management Techniques
Death rattle
  • Educate the family about the nature of the sound
  • Reposition the patient to promote drainage
  • Consider using anticholinergic medications if the patient is suffering
Apnea
  • Educate the family about the possibility of irregular breathing patterns
  • Administer opioids if dyspnea is present
Respiration with mandibular movement
  • Educate the family about changes in breathing patterns
Decreased urine output
  • Educate the family about the natural decrease in bodily functions
Pulselessness of radial artery
  • Educate the family about changes in circulation and perfusion
Inability to close eyelids
  • Educate the family about the physical changes in muscle control
  • Use a wet washcloth if eyes are dry or irritated
Grunting of vocal cords
  • Educate the family the family about the possibility of vocal cord tension
  • Administer opioids if pain is present
Fever
  • Place a cool washcloth on the patient’s forehead
  • Remove excess blankets
  • Use a fan
  • Administer acetominophin if necessary

Clinical signs are based on studies of cancer patients but are generalizable to other causes of death (e.g., heart disease, advanced lung disease, sepsis and dementia). This list is not exhaustive but includes some of the most common end-of-life symptoms.

Link Between Clinical Signs of Dying and Impending Death

A direct relationship exists between the number of clinical signs of dying and death:

  • Persons with two clinical signs of dying had a 40% chance of dying in the next three days
  • Persons with eight clinical signs of dying had more than an 80% chance of dying in the next three days

The likelihood of dying in the next three days death increases with the number of present end-of-life signs. Physicians should make a care plan update as end-of-life signs escalate.

How Long Does the Active Stage of Dying Last?

The active stage of dying generally spans about three days following a roughly three-week pre-active dying stage.

Typical symptoms include unresponsiveness and a significant drop in blood pressure.

What Is the Difference Between Transitioning and Active Dying?

Transitioning and active dying are distinct stages at the end of life.

Transitioning is the initial phase in which a patient's decline becomes evident. During this time, they may exhibit noticeable changes in physical and cognitive function, as well as emotional withdrawal.

Active dying is the stage that directly precedes death and is characterized by a significant decline in the patient's overall condition, often accompanied by symptoms like unresponsiveness and a drop in blood pressure.

This differentiation helps caregivers and medical professionals understand and respond appropriately to the evolving needs of patients during this delicate period.

What Are the Emotional Signs of Death?

Clinical indicators and symptoms are not the only signs of impending death. Analyzing emotional signs can also shed light on a patient’s end-of-life status. Some of these signs include:

  • A prolonged state of excessive fatigue, sleep, appearing catatonic
  • Confusion and/or disorientation; hearing or seeing people and events not visible or not present to you
  • Social withdrawal and detachment
  • The desire to conduct a life review or settle something unresolved
  • The desire to focus on funeral planning

Hospice Team Involvement During Stages of Dying

When clinical signs of dying emerge, the hospice interdisciplinary care team initiates a care plan update that includes:

  • Revisions to necessary interdisciplinary visits
  • Education on the dying process
  • Medication adjustments
  • Assurance that appropriate HME is in place to assist your patient and their family

The hospice team provides support in a variety of ways specific to each team member's discipline.

A nurse, nurse practitioner, and/or physician may:

  • Discuss the discontinuation of non-beneficial or burdensome treatments
  • Ensure symptom medications and necessary equipment are available
  • Educate family on use of medications to manage symptoms and/or pain, and describe physiological changes associated with the dying process

The social worker and chaplain:

  • Help patients and families explore their feelings and relationships
  • Participate in life review, including the search for meaning and contributions
  • Conduct life closure, including forgiving and facing regrets, saying goodbye, and coming to terms with the acceptance of ongoing losses and death

Hospice aides:

  • Recognize the clinical signs of dying and communicate them to the other team members, as well as support the patient and family through the dying process.

How to Help Families Cope After a Loved One Has Died

Family members need time to process their feelings after a patient dies. They should not be subjected to additional stress with the logistics of legal forms or removal of the body. Be empathetic.

Medical professionals and care teams should keep in mind that the time, setting, and specific events surrounding a loved one’s death shape lasting memories for their family members—solemn moments that deserve to be respected and honored.

To support families as they begin the grieving process:

  • Give private time alone with their loved one after a death to say their goodbyes and share memories
  • Answer family members’ questions factually, calmly, and with empathy
  • Explain clearly and compassionately what will happen in the next several hours or days

Honor rituals

  • Honor families’ needs for specific rituals at the time of or shortly after death, such as bathing of the body, recitation of prayers, or dressing of their loved one in special clothing or garments.
  • Make sure the immediate environment—whether the patient’s home, hospital room, nursing home/care facility room, inpatient hospice room, etc.—is as uncluttered, clean, and orderly as possible, with no offensive odors

Encourage a healthy grieving process

  • Remind family members and caregivers that each person’s grief is unique and will ebb and flow over the following days, weeks, months, and years. If the patient was on hospice care, Medicare-certified hospices provide up to a year of grief and loss counseling for their family following the patient’s death.
  • Invite family members and friends to stay in touch and rely on each other as they move through their grief.
References:
  • Hui D, dos Santos R, Chisholm G. et al. Bedside Clinical Signs Associated With Impending Death in Patients With Advanced Cancer: Preliminary Findings of a Prospective, Longitudinal Cohort Study. Cancer 2015;121:960-967.
  • Hui D, dos Santos R, Chisolm G, et al. Clinical Signs in Cancer Patients. The Oncologist 2014;19:681–687

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