Understanding the Dying Process in Palliative Care

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Published: 18 April 2021

Death is a normal part of the life cycle. As a health worker or professional, it should be viewed as an honour and privilege to be part of the care provided to a person who is dying, as well as their loved ones.

When caring for someone at the end of their life, it is important to know what to expect during death.

In this article, we will look at the physical and emotional changes that occur during the dying process and provide tips on how to care for a patient who is dying with dignity, respect and compassion.

The Role of Healthcare Professionals in Death

Patients and families value shared decision-making, expert care, and respect and compassion during the end-of-life period (CareSearch 2020).

Identified barriers to providing appropriate end-of-life care include:

  • Being unable to recognise the signs of dying
  • Inability to manage end-of-life symptoms
  • Lack of ability to communicate with patients and loved ones about the dying process.

(CareSearch 2020)

An essential part of providing high-quality care is being able to recognise the signs that a patient is nearing death (CareSearch 2020).

Appropriate recognition ensures that trained health professionals can work collaboratively with all members of the care team to confidently discontinue any treatments that may be burdensome in the last days of life, as well as provide care that optimises the patient’s wellbeing and respects their values and preferences (QLD DoH 2019).

According to Ellershaw and Lakhani (cited in QLD DoH 2019), there are 10 key elements for best care of the dying person:

  1. Recognition that the patient’s death is nearing (and appropriate documentation of this).
  2. Communication with the patient (if this is deemed appropriate) and their relatives, carers or advocates to inform them that death is nearing.
  3. Discussion about the patient’s preferences, feelings, faith, beliefs and values.
  4. Anticipatory prescription of medicines to alleviate pain, excessive respiratory secretions, agitation, nausea and vomiting, and shortness of breath.
  5. Review of all clinical interventions to ensure they are in the patient’s best interests.
  6. Review of the patient’s hydration needs (including the commencement, continuation or cessation of artificial hydration).
  7. Review of the patient’s nutrition needs (including the commencement, continuation or cessation of artificial nutrition).
  8. Discussion of the care plan with the patient (if this is deemed appropriate) and their relatives, carers or advocates.
  9. Assessment of the patient every four hours.
  10. Dignified and respectful care immediately after death.
dying process during palliative care comforting patient

Preparing for Death

Read:

The Signs of Dying

It is important to understand the physiological process of dying. Generally, the patient’s body systems will start to slow down. The heart will beat more slowly, reducing cardiac output and circulatory perfusion to the organs and tissues in the body. As a result of this, the brain and organs will receive less blood and oxygen than required. This may cause cognitive impairment and affect hormones, and consequently, organ function (Healthdirect 2019).

The following changes are likely to occur during the dying process. However, it is important to remember that death is different for every person and these signs may or may not occur, depending on the individual (Palliative Care Australia 2015; Healthy WA 2020).

You may notice these changes weeks, days or even hours before death and there is no specific order in which they will occur (Palliative Care Australia 2015; Healthdirect 2019). Therefore, it is important to recognise any signs of discomfort and ensure symptoms are being attended to immediately.

  • The patient may feel tired, causing them to sleep more often or for longer periods of time.
  • The digestive system will slow, causing reduced appetite and thirst or a desire to eat different foods.
  • The patient may have difficulty regenerating skin cells, causing the skin to become thinner.
  • The patient may experience weight loss.
  • Breathing may become irregular, shallow or noisy due to reduced blood flow and accumulating waste products. This may also cause coughing.
  • The skin may become pale, grey, dark or mottled due to reduced blood circulation.
  • The patient may become confused or sleepy due to reduced oxygen in the brain.
  • They may experience hallucinations, become disoriented with time, people or place, or lose consciousness.
  • The patient may withdraw socially due to a lack of energy to stay alert and communicate.
  • The patient’s senses may decline. Hearing is the last sense to be lost, so the patient might still be able to hear people speaking to them even if they are unconscious.
  • The patient’s body temperature may fluctuate due to reduced blood flow.
  • The patient may become incontinent.
  • Saliva and mucus may gather in the patient’s throat due to the slowing of coughing and swallowing. This may cause bubbling noises.
  • The patient may become restless due to reduced blood flow to the brain and other physiological changes.

(Healthdirect 2019; Palliative Care Victoria 2018)

Maintain compassion and open communication at all times with patients and their loved ones. Creating a safe and compassionate environment is fundamental to all involved in the care being provided.

Managing Symptoms During the Dying Process

The following table provides practical suggestions for keeping the patient comfortable during the dying process:

Symptom Management
Social withdrawal
  • Encourage loved ones to express their love and care in simple ways
Confusion
  • Tell the patient who you are before speaking to them
  • Speak clearly and normally
  • Avoid correcting the patient unless they are becoming distressed due to confusion
  • Maintain a calm, quiet environment
Reduced eyesight
  • Use soft lighting
  • Relieve dry eyes with artificial tears
  • Cleanse the patient’s eyes with normal saline
Pain
  • Change the patient’s position often to prevent soreness and stiffness
  • Consider mattresses that help to relieve pressure and increase comfort
  • Consider medicines
  • Apply cold packs
  • Address treatable causes of pain (e.g. urinary retention)
Nausea and vomiting
  • Consider medicines if appropriate
Loss of appetite and thirst
  • Give the patient sips of water, ice chips or frozen juice
  • Use swabs or sponges soaked with water to keep the patient’s mouth moist
  • Keep the lips moist using balm or paraffin
  • Avoid feeding patients who are experiencing dysphagia (this may cause distress)
General hygiene
  • Bathe the patient in bed using warm, soapy water and face washer
  • Ensure sheets are clean
  • Attend to any personal hygiene needs
Oral hygiene
  • Clean the patient’s teeth or dentures
  • Use moist mouth swabs or sponges (soaked with Normal Saline 0.9%) to clean the patient’s mouth (including the inside of the cheeks) and tongue
Fatigue
  • Let the patient sleep when they want to
  • Speak to the patient softly and naturally when they are alert
  • Space out daily activities
Fluctuating body temperature
  • If the patient is cool, use light bedding
  • If the patient is hot, use a fan and cool, damp towels
Incontinence
  • Use pads and absorbent sheets
  • Use skincare products and barriers
  • Consider urinary catheter insertion
Retention
  • Consider urinary catheter insertion
  • Consider laxatives
  • Give a gentle abdominal massage (for faecal retention). This must be done by a trained professional
Saliva and mucus
  • Elevate the patient’s head and place them on one side, using pillows as support
  • Consider medicines to reduce saliva and mucus production
  • Suctioning should be avoided
Irregular breathing or shortness of breath
  • Elevate the patient’s head and place them on one side, using pillows as support
  • Open doors and windows or use a fan to facilitate cool air movement
  • Consider medicines if appropriate
Fever
  • Consider medicines if appropriate
  • Use cool sponges and fans
Restlessness
  • Speak to the patient in a soft, natural way
  • Encourage loved ones to lightly massage the patient’s hand, feet or forehead
  • Play familiar music quietly
  • Minimise noise
  • Adjust room temperature as required to ensure the patient is comfortable
  • Consider medicines if appropriate
Anxiety and distress
  • Encourage the patient’s family to bring photos, music and objects to help make the patient’s environment more comfortable
  • Encourage the patient’s family to read them a book or poem that the patient likes

(Palliative Care Victoria 2018; Healthy WA 2020; QLD DoH 2019)

Communicating With the Patient’s Family and Friends

The following practical tips may help you to support and communicate with the patient’s loved ones during the dying process:

  • Ensure loved ones understand that death is imminent
  • Recognise any spiritual, cultural or practical needs
  • Recognise and respond to loved ones’ emotional needs
  • Provide relevant information and ensuring loved ones know what to expect
  • Explain the rationale for discontinuing treatments (if this is indicated) and how you will maintain the patient’s comfort
  • Involve loved ones in care
  • Establish a roster to ensure the patient is not left alone (if this is what loved ones request)
  • Allow loved ones to take adequate time to say goodbye
  • Allow loved ones to have time alone with the patient
  • Encourage loved ones to get adequate rest, take breaks, eat and drink.

(QLD DoH 2019)

Providing Emotional Comfort During Death

dying process emotional comfort with familiar photos
Familiar objects or photos may bring comfort to the patient.

The patient may be comforted by:

  • The presence of loved ones or pets
  • Being spoken to in a calm, reassuring way (even if they are unconscious)
  • Having their hand held
  • Familiar music
  • Fresh air
  • Spiritual rituals
  • Complementary therapies (e.g. aromatherapy)
  • Relocation to a private room or area
  • Comfortable lighting and room temperature
  • Familiar objects or photos
  • Access to a call bell (encourage family and friends to use this device as a form of communication).

(Palliative Care Victoria 2018; QLD DoH 2019)

Death

It is important to note that death is often peaceful for the patient. In most cases, the patient will be calm in the hours before death occurs (Healthdirect 2019).

As the patient’s body begins to ‘let go’ of life, they may fall in and out of consciousness and experience changes in colour, circulation or breathing pattern (Better Health Channel 2018). This can often be confronting for the patient’s loved ones and they may seek reassurance and ask questions throughout the process. It's important that you as a health professional understand the process and are confident in providing that information. If you are unsure, reach out to another colleague who can help explain what is happening.

Eventually, the patient will fall into complete unconsciousness. They will not be able to be woken, but may still be able to hear and maintain awareness of their surroundings (Better Health Channel 2018).

The patient’s brain will cease functioning and their skin will cool within a few minutes of their heart and breathing stopping (Healthdirect 2019).

The presence of loved ones can bring great comfort to a dying patient, even if they are not conscious (Better Health Channel 2018).

The patient will display the following signs once death has occurred:

  • Absence of palpable cardioid pulse
  • Absence of heart sounds for 30 seconds
  • Absence of breath sounds for 30 seconds
  • Pupils dilated and fixed on one spot
  • Lack of response to centralised stimuli
  • Lack of motor response or facial grimace response to pain.

(QLD DoH 2019)

You may also notice the following signs:

  • Partially open eyelids
  • Mouth falling open due to the relaxed jaw
  • Pale and waxy skin
  • Loss of bladder and bowel control.

(Palliative Care Victoria 2018; Healthy WA 2020)

After death has occurred, loved ones may want to sit with the deceased patient for a period of time (Better Health Channel 2018).

There is no need to contact emergency services if the death was expected (Healthy WA 2020).

Always treat the deceased patient with dignity and respect.

Reflection Questions

  1. Can you recall a time when you were involved in caring for a person who was dying?
  2. What was the environment like? What could you hear and see?
  3. In what ways could you have improved your care of that patient?

Additional Resources


References

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