The hospice nurse is caring for an actively dying client who is unresponsive

By Joseph Shega, MD, Chief Medical Officer, VITAS Healthcare

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. Actively dying or imminent death represents the last week of life and has characteristic clinical signs detailed in the table below.

The expression of clinical end-of-life signs varies substantially between patients, but a greater number of clinical signs present within an individual increases the likelihood of death.

End-of-Life Stages Timeline

The identification of a patient transitioning to imminent death is important, so that clinicians can help educate patients and families about the natural dying process to inform decision-making as well as prepare the patient and family for death as much as feasible.

In addition, the care plan should be updated to reflect the change in the patient’s status, including any necessary clinical visits. A higher level of care may be needed on occasion for a period of crisis or uncontrolled symptoms not responding to initial treatments.

The table below demonstrates what to generally expect at each stage of death.

7+ Days Before Death

4-6 Days Before Death

2-3 Days Before Death

Less Than 2 Days Before Death

Clinical signs are based upon study in cancer patients but are generalizable to other causes of death (e.g. heart disease, advanced lung disease, sepsis, and dementia). The list is not exhaustive but includes some of the more 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
• Persons with eight clinical signs of dying had more than an 80% chance of dying

Therefore, the more clinical signs of death that are present necessitates a care plan update including necessary discipline visits.

The likelihood of death increases with the number of present end-of-life signs.

How Long Does the Active Stage of Dying Last? 

The active stage of dying generally only lasts for about 3 days. The active stage is preceded by an approximately 3-week period of the pre-active dying stage. Though the active stage can be different for everyone, common symptoms include unresponsiveness and a significant drop in blood pressure.

What Are the Emotional Signs of Death?

There are many forewarning signs that death is near besides clinical indicators and symptoms. 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, perhaps being comatose-like
• Confusion and/or disorientation; Hearing or seeing people and events not visible and 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
• Adjustments / additions of necessary medications
• 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.

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

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, being able to say 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

After a patient dies, family members need time to process their feelings. 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.

• Give family members 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 private family time with the body, 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 day, 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