End-of-Life Nursing Care: �Symptom Management in a Dying Patient

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Erin Casale BSN, RN-PMGT

March 13, 2026

Objectives

• Verbalize the difference between palliative care and hospice care
• Identify medications used for comfort and symptom management in EOL care
• Describe non-pharmacological ways to provide comfort and symptom management
• Describe ways to support the patient and family members in understanding the purpose and effects of comfort‑focused treatments

In this presentation, we will assume that all scenarios are for a patient who is DNR and has chosen to not pursue aggressive treatment for their disease process. Exactly how these symptoms are managed also depends on the setting, such as: a patient's home on hospice or palliative care, in a hospital transitioning from acute care to comfort care. 

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End-of-life (EOL) care can be lumped together with the terms: palliative care, hospice care, comfort care.  

While not all equal in definition or goals of care, they have the same overarching goal of getting the patient comfortable and keeping symptoms managed.

Palliative care                       Hospice care

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• Medical care that is specialized for people with chronic illness
• Focuses on symptom management
• Goal: improved quality of life
• Can receive palliative care along with curative treatment

• Medical care that is specialized for people with terminal illness and life expectancy of 6 months or less
• Focuses on symptom management
• Goal: improved quality of life and allow natural, comfortable death
• Can not undergo curative treatment on hospice

Putting them together:

• Hospice care is palliative care,

    but not all palliative care is hospice.

• Hospice is a philosophy of caring: those nearing end of life due to a terminal illness are provided with relief of physical, emotional, spiritual and mental suffering.
• Hospice care teams are comprised of physicians, nurses, CNAs, social workers, chaplains, bereavement coordinators, and volunteers!
• Provide support to the patient and their family. Above all, the patient’s dignity is maintained through the end-of-life.

Partnership

• In an article by Kinchen, it was said that the nurse is “a partner and facilitator in the understanding of options, effects and the implications of therapeutic choices”�
• 71% of people want advanced directives, indicating that they want to be in charge of their EOL decisions. �
• This is where we as nurses come is as the patient’s most trusted advocate.  When our patients are no longer able to verbalize their needs or have become non-responsive in their dying process, we are the ones who make sure that their end-of-life goals are perused.

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The dying process is a process

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• This process may be hours, days, weeks or months.  At this point the patient and their families often focus on higher quality of life instead of quantity.  
• At this point, futile treatments are not in the patient’s best interest.
• Symptom management for these patients is essential to maintaining high quality of life. 

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Physical symptoms in the dying process

• Most patients follow a “typical” trajectory of physical changes in their dying process

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• Patients can experience some, none, or all of the physical or psychosocial symptoms in this discussion during their dying process

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EOL symptoms for this discussion

• Physical symptoms: pain, dyspnea, nausea, anxiety, agitation

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• Psychosocial distress: emotional, spiritual, mental

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How are symptoms managed?

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• Most physical symptoms are managed with medication, but also many non-pharmacological ways to manage
• Most psychosocial distress requires emotional support, reassurance, education, spiritual guidance and support.  Fewer medications are used for these symptoms.   
• Lots of TLC and “back to basics” of nursing care �

Medications routes

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• PO: pills if still able to safely swallow, and liquid medications.
• PEARL: Can make a med slurry: crush/dissolve in 0.5-1ml water and administer sublingually or into buccal cavity.  
• IV: intermittent or continuous.
• SQ: intermittent or continuous.
• Rectal: compounded suppository or Macy catheter
• Transdermal: medication patches or topical creams

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**Common medications, not an exhaustive list

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PAIN

• Due to acute and/or chronic illnesses at EOL

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• Verbal or non-verbal pain scales
• DVPRS (The Defense and Veterans Pain Rating Scale ) and iPAT (Iconic Pain Assessment Tool ) use numerals (0-10) and functional limiting descriptors by patient to self-report level of pain

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• CPOT (Critical Care Pain Observation Tool) and CNPI (Checklist of Non-Verbal Pain Indicators) use objective assessment of patient’s behaviors and psychological indicators�

Pain management: meds

• OPIOIDS: bind to the opioid receptors in the CNS which inhibits the transmission of pain from the periphery to the spinal cord.  Opioids alter the perception of and response to pain.
• Fentanyl: IV, SQ, transdermal patch
• Fentanyl patches are not ideal for EOL care due to body temperature dysregulation.  Optimal absorption of Fentanyl is achieved when the patches are placed over an areas with subcutaneous fat. 
• hydromorphone: PO, IV, SQ
• Methadone: PO, IV, SQ
• Oxycodone: PO
• Morphine: PO, IV, SQ
• Avoid Morphine in renal failure due to risk of metabolite build up causing toxicity: myoclonus, twitching, confusion, agitation
• Hydrocodone: PO
• Tramadol: PO
• Atypical opioid: weak Mu opioid agonist, increases serotonin and norepinephrine

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Pain management: meds

• Gabapentin: PO
• Adjuvant which blocks voltage-gated calcium channels which modulates the release of excitatory neurotransmitters that participate in sensation of pain.  

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• Acetaminophen: PO, PR
• Non-opioid analgesic works in the CNS by inhibiting COX enzymes, blocks the action of substance P. Substance P is a neurotransmitter and modulator of pain perception. 
• Ibuprofen: PO
• NSAIDS inhibit COX enzymes, which results in blocking prostaglandin synthesis which has analgesic and anti-inflammatory properties.
• Dexamethasone: IV, SQ
• Bone pain reduced by inhibiting prostaglandin syntesis

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Pain Management: non-pharm

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• Gentle and non-frequent repositioning
• Pillows for positioning and off-loading pressure points
• Ice / heat
• Guided imagery, music, distraction, decrease stimuli in room, pet therapy, comforts of home

DYSPNEA

• Commonly seen in patients with congestive heart failure, COPD, PNA, lung malignancies, pulmonary edema, renal or liver failure d/t fluid volume overload

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• Also described as: shortness of breath, air hunger, trouble breathing
• manifested by labored breathing, accessory muscle use, tachypnea

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Dyspnea management: meds

• Nebulized solutions
• Albuterol: Relaxes bronchial smooth muscle by action on beta2 receptors.
• Ipratropium: anticholinergic agent in bronchial smooth muscle causing bronchodilation
• Steroids: Dexamethasone, Prednisone
• Reduce inflammation in the lungs

Dyspnea management: meds

• Opioids: Morphine, hydromorphone, Fentanyl, Oxycodone
• Drugs of choice for dyspnea at end of life. Opioids reduce the sensation of dyspnea. The mechanism is not totally clear, but it is thought to cause vasodilation that results in decreased dyspnea. Opioids can also decrease anxiety associated with dyspnea. 

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**The goal of opioids for dyspnea is not respiratory suppression. Respiratory suppression occurs with RAPID titration of opioids and is never the goal in end-of-life care. 

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• Benzodiazepines: Lorazepam
• decrease anxiety associated with dyspnea

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**Pearl: Opioid + Ativan for respiratory distress!

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Dyspnea management: non-pharm

• Elevate HOB for optimal breathing, "A-frame" pillow positioning
• Fan blowing towards face, cool washcloth 
• Sips of water or frequent oral care for mouth breathing
• Foley catheter for energy conservation

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• Pearl: Do not increase oxygen to correct hypoxia. If and when appropriate, have a conversation with MDPOA about titrating oxygen down/off to allow for a natural death.
• Oxygen, even just 1 liter, can prolong life.

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NAUSEA

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• Seen in patients with acute and chronic illnesses at EOL
• Bowel obstructions, decreased motility, malignancies, intercranial issues 

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• Originates from the brain or GI tract

Nausea management: meds

• Antidopaminergics (D2 antagonist) which are best for nausea related to medications
• haloperidol, olanzapine, promethazine, prochlorperazine, metoclopramide, 
• Benzodiazepines work in the cerebral cortex
• lorazepam
• 5-HT3 antagonists block the receptors in GI track and vomiting center
• ondansetron
• Antihistamines block H1 at the vestibular center, N/V triggered by motion
• diphenhydramine
• Corticosteroids reduce inflammation in cerebral cortex (especially helpful with intercranial issues)
• Dexamethasone

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Nausea management: non-pharm

• Cool washcloth, gentle fan blowing
• Peppermint essential oil aromatherapy
• Check rectal vault for stool
• Decrease PO intake
• Forcing the patient to take PO can cause nausea and/or vomiting, and aspiration
• Frequent oral care for dry mouth
• IV hydration and artificial nutrition can cause fluid volume overload

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ANXIETY

• Psychological distress can be exhibited through delirium, terminal agitation and anxiety
• Root cause of anxiety? Physical or existential/psychological?
• If physical, can another medication be given to ease that symptom to then decrease anxiety?  
• Fear of suffering or fear of death? Fear of what is being left behind?
• Many people need permission to die.

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Anxiety management: meds

• First line: Benzodiazepines
•  Enhance the action of the neurotransmitter GABA, which slows down the CNS. This produces the calming and sedative effect that helps with anxiety.
• lorazepam, midazolam, diazepam, midazolam
• Second line: diphenhydramine and trazodone for the sedating side effects

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• Concurrently manage other physical symptom(s) that may be causing or contributing to anxiety

Anxiety management: non-pharm

• Emotional support, spiritual support
• Decreased stimuli, darken and cool room
• Gentle fan blowing, repositioning, going outside
• Waiting for loved ones to come to visit, or leave
• Waiting for permission to die from family members
• Encourage family members to talk to their loved ones even if they are no longer responsive.

AGITATION

• Due to acute and/or chronic illnesses at EOL
• Dementia, Parkinson's/Lewy body, brain malignancies, CVA or other neurological injury
• Can stem from existential distress or PTSD
• Can stem from another unmanaged physical symptom 

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AGITATION (cont.)

• Manifested by: restlessness, “2 speeds,” usually noted with increased confusion, disorientation, hallucinations/vision like experiences, sudden attempts to get out of bed when patient hasn't been up in days or weeks, pulling on clothing/gown or sheets, can have combative behaviors out of character, "I've gotta go" statements.

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Agitation management: meds

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• First line: Antipsychotics
• Block dopamine (D2) receptors in the CNS 
• haloperidol, olanzapine, quetiapine 
• Benzodiazepines when agitation is refractory to antipsychotics
• Barbiturates: Depress the sensory cortex to produce drowsiness and sedation.  Works on the GABA receptors as well. 
• phenobarbital 
• Concurrently manage other physical symptom(s) that may be causing or contributing to agitation

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Agitation management: non-pharm

• Decreased stimuli, darken and cool room
• Sometimes family presence will increase agitation
• Physical touch may no longer be comforting
• May not respond to emotional support or reassurance

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• PEARL: Mind your P's and Q: Pain, Potty, Poop, Quiet environment?

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Education for families

• Overmedicating vs under medicating
• REASSURANCE!
• “Your loved one looks comfortable.”
• Tell family members the truth!
• “Your loved one looks uncomfortable. I'm going to get some medication to make them more comfortable. I'm going to _____ to make them more comfortable."
• “These changes are expected during the end-of-life process.”

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After death…

• Emotional support for family
• Chaplain and social work as additional support
• Notify provider
• Prepare body for viewing: comb hair, oral care, lotion, supine position, straighten linens, remove or hide medical equipment/devices, arms in a peaceful position
• Body care: per facility policy prior to transport to morgue or mortuary

Case Study: Frances

• 98 F found down at memory care unit.  BIBA to ED with GCS 3, R pupil blown and agonal breathing.   Pt is a DNR/DNI. MDPOA declines radiology work up and requests comfort care.  Hospice facility has a bed available and pt moved to inpatient unit for hospice end-of-life care. 

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Case Study: Frances

• Upon arrival to IPU:
• 98.4, 125, 100/60, 16, 97% on 15L NRB
• Non-responsive, labored breathing with inspiratory stridor and accessory muscle use – severe respiratory distress
• Pt in high-fowlers position for optimal breathing 

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Case Study: Frances

• Morphine 2mg  IV Q10min PRN x3 given with Ativan 0.5mg IV x1.  No change in breathing.
• Provider notified and orders received for: Dexamethasone 8mg IV x1, DuoNeb INH Q4H PRN, increase PRN Morphine to 4mg IV Q10min and schedule Morphine 4mg IV Q4h.  

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Case Study: Frances

• Scheduled Morphine given with Dexamethasone and a Neb treatment.  Foley catheter placed, bed bath given, oral care completed and patient was repositioned to right side. Volume of stridor decreased and breathing is less labored upon reassessment.  
• Oxygen titration per family request (15L to room air over 5 hour period). 
• Ativan x2 given for slight increase in stridor with Morphine (scheduled and PRN x1)
• Pt no longer in distress by end of shift. 

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• Peaceful, comfortable death surrounded by family.

“The sun setting

is no less beautiful

than the sun rising.”

                      -Japanese proverb

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                                                           Questions?

Resources

Afenigus, A. D. (2024). Evaluating pain in non-verbal critical care patients: A narrative review of the critical care pain observation tool and its clinical applications. Frontiers in Pain Research, 5, 1481085. https://doi.org/10.3389/fpain.2024.1481085

Baillie, J., Anagnostou, D., Sivell, S., Van Godwin, J., Byrne, A., & Nelson, A. (2018). Symptom management, nutrition and hydration at end-of-life: A qualitative exploration of patients’, carers’ and health professionals’ experiences and further research questions. BMC Palliative Care, 17, 60. https://doi.org/10.1186/s12904-018-0314-4

Gerber, K., Willmott, L., White, B., Yates, P., Mitchell, G., Currow, D. C., & Piper, D. (2022). Barriers to adequate pain and symptom relief at the end of life: A qualitative study capturing nurses’ perspectives. Collegian, 29(1), 1–8. https://doi.org/10.1016/j.colegn.2021.02.008

Jennes, D. A. D., Biesbrouck, T., De Roo, M. L., Smets, T., & Van Den Noortgate, N. (2024). Pharmacological treatment for terminal agitation, delirium and anxiety in frail older patients. Geriatrics, 9(2), 51. https://doi.org/10.3390/geriatrics9020051

Kinchen, E., (2015). Development of a Quantative Measure of Holistic Nursing Care. Journal of Holistic Nursing. 33:3. 238-246.

Weinstein, E., Cagle, S., & Arnold, R. M. (2024, April 1). Corticosteroids in the treatment of bone pain (Fast Fact #129). Palliative Care Network of Wisconsin. https://www.mypcnow.org/fast-fact/steroids-in-the-treatment-of-bone-pain

Patient stories

• Maria waited for her sister
• Ephraim waited to be alone
• Kay celebrated her anniversary
• Ally wasn’t ready
• Karen met her granddaughter and had broken bridges mended
• Bob and the blanket