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Chapter 9: Management of the End of Life

Learning objectives for this chapter

By the end of this chapter, we would like you:

-To describe how to facilitate a supportive end-of-life environment.

-To discuss the advantages and disadvantages of different settings in which a person may choose to die.

-To explain the range of strategies that may be used to support the family / carers / significant others of a person receiving palliative care at the end-of-life / during death.

-To discuss the importance of religion and rituals at the end-of-life / during death, and to give examples of common end-of-life / death customs among cultural groups in the UK.

-To understand strategies to care for a person during their death.

-To be confident in caring for a person's body after their death, in a respectful and dignified way.

A supportive environment at the end of life

Nurses should support people to identify, and to remain in, their preferred place of death. Most people prefer to die at home; however, some may prefer to die in a palliative care hospice or residential nursing home. In addition, many people receiving palliative care die in hospital. Advantages and disadvantages are shown below:

Home

Hospice or

Nursing Home

Hospital

Advantages

  • Often preferred.
  • Familiar, non-medical setting.
  • Family life maintained.
  • Patient in control.
  • Familiar care staff.
  • Immediate access to specialised care.
  • Application of the palliative care philosophy.
  • Family is relieved of the burden of care.
  • Often more peaceful than hospitals.
  • Availability of bereavement support.
  • Immediate access to specialised care.
  • Family is relieved of the burden of care.

Disadvantages

  • Pain control may be inadequate.
  • Specialist palliative care services not always available.
  • Patients not protected from unwelcome visitors.
  • Burden of caregiving falls to family / carers.
  • Disrupted family life.
  • Financial consequences.
  • Financial consequences.
  • Surroundings may be unfamiliar.
  • Families may experience guilt at relinquishing care.
  • Standards of palliative care in UK hospices are variable.
  • Patients may feel isolated on a busy unit.
  • Symptoms may be poorly controlled - particularly if staff are unfamiliar with palliative care.
  • Care is more oriented to cure.
  • Unfamiliar setting and staff.
  • Family may not be encouraged to participate; visiting hours may be restricted

A patient's preferred location of death depends on a range of factors. People may also change their minds about their preferred place to die. Preferred location should be approached early in planning palliative care, and documented in the patient's advance care plan. Patients should be involved in decisions for as long as possible, and changes to their plans should be accommodated. Regardless of the location, the environment should be supportive.

Supporting a person's family / carers / significant others

In addition to supporting a patient, nurses must also support the patient's family / carers / significant others. The amount of information these individuals wish to be given should be clarified. Nurses must also prepare visitors for the person's death. To prepare, people need to be provided information:

  • Which addresses their uncertainties.
  • Which allows them to prepare emotionally for loss and bereavement.
  • About the important tasks they can complete, if they wish to do so.

People must be informed about the goals of palliative care. People often want to feel 'helpful' during the person's death; nurses should communicate that their contribution is valued.

People may not know what to expect, and should be provided with information about the physical changes that occur during death. These changes can be distressing to witness. People should be reassured that these are normal, and that efforts will be made to ensure the patient is comfortable.

A patient's family / carers / significant others should be assessed for signs that they are having difficulties coping. Nurses should provide access to relevant professionals who can provide assistance in management of loss, grief and bereavement.

The importance of religion and ritual at the end-of-life

Religious and spiritual beliefs may impact on palliative care. Nurses should ask about beliefs and rituals relevant to a person's palliative care. Some of the rituals associated with death and care of the body for some common religious groups are describe below:

Religious / Cultural Group

Typical Rituals Related to Death

Typical Rituals Related to Care of the Body

Christianity

  • A priest performs the 'last rights'.
  • People may wish to pray with the dying patient.
  • Body is cleaned, covered with a white sheet.
  • Body may be buried or cremated.
  • Funeral directors assist with funeral preparations.

Islam

  • If possible, the patient should face Mecca.
  • Male patients may keep a beard and wear a topi (headgear, not to be removed).
  • A mullah (religious leader) may whisper prayers into the patient's ear.
  • Traditionally, the body should not be touched by non-Muslims.
  • There are precise rules for caring for the body.
  • Burial should occur as soon as possible, and certainly within 24 hours of death.
  • Post-mortems and organ donation are often resisted.

Hinduism

  • Brahmin priests may perform rituals around the forgiveness of sins.
  • A thread may be tied around a person's wrist to signify receipt of a priest's blessing.
  • Devout Hindus may wish to be placed on the floor (i.e. close to the Earth) to die.
  • Correct funeral rites are perceived as important to salvation of the person's soul.
  • Only men, ideally the eldest son, perform funeral rites.
  • The body is usually cremated.
  • Bereavement involves 10 days of mourning, each with a particular ceremony.

Sikhism

  • The patient may recite hymns; if they are too unwell, a reader may assist.
  • Death attendants may recite words of praise.
  • The body is washed and placed in a shroud.
  • Religious artefacts may be left on the patient's body.
  • The body is usually cremated.
  • Visiting the bereaved is seen as a duty, and food is often provided.

Judaism

  • Psalms are recited.
  • The patient is never left alone during death.
  • Pillows should not be removed from under the head, as this is seen to hasten death.
  • Preparation of the body follows precise rituals, often performed by religious specialists.
  • Ideally, burial should occur within 24 hours of death.
  • Bereavement is structured, with various ceremonies.

Buddhism

  • Chanting may be used to allow the patient to die with a 'clear mind'.
  • Distractions  are often resisted
  • Many Buddhists believe that a person's consciousness remains with / near their body for 8-12 hours after death, and avoid touching the body during this period.
  • The body may be buried, cremated or embalmed.

Nurses must not assume they 'know' a person's wishes. Nurses must always ask a person about beliefs and rituals relevant to their palliative care.

Care during death in the palliative care setting

Nurses should continue the systematic physical assessment of a patient right up until their death. A patient's symptoms should be relieved promptly, while avoiding unnecessary intrusion. Nurses should consider:

  • Anticipating future care needs. Medications, equipment and other resources should be on-hand; this is particularly important if in the home.
  • Position the patient to ease their discomfort. Frequent repositioning is often important.
  • Mouth care - poor oral hygiene, dryness and odour are common near death. Regular brushing of the teeth, tongue and other oral surfaces with soft brushes, using sips of water or sponges soaked in water to prevent dryness within the oral cavity, and using moisturiser to prevent dryness of the lips, etc. are important.
  • Eye care, including the careful, regular removal of dried tears and mucous from the eyes using sterile gauze wetted with normal saline.
  • Bladder and bowel care, including regularly changing wet or soiled clothing and bedding, using continence equipment such as pads and catheters, and assessing for / managing retention of urine and constipation.
  • The provision of artificial nutrition and hydration. In the provision of artificial nutrition and hydration, nurses must be guided by the patient's wishes, and the wishes of their family / carers / significant others (as appropriate).
  • The withholding and withdrawal of life-sustaining treatments. Nurses must be guided by the patient's wishes, and the wishes of their family / carers / significant others (as appropriate).
  • The ongoing management of symptoms. There are five symptoms which are particularly common at the end of life: (1) pain, (2) dyspnoea, (3) nausea and vomiting, (4) excessive respiratory secretions, and (5) restlessness, agitation and delirium. These are covered in a previous chapter.

People may experience a range of 'crises' or 'emergencies' in their final days. Such situations may include:

  • Bleeding.
  • Severe, uncontrolled pain.
  • Severe agitation.
  • Extreme dyspnoea.
  • Seizures.
  • Choking.

These are all manageable problems, and should not be causes of death unless a person has specifically requested not to receive supportive intervention. These 'crises' or 'emergencies' should be actively managed, with the aim of promoting comfort.

As death approaches, nurses should determine whether they are expected to attempt CPR following the person's death. In most cases, a patient receiving palliative care will have a 'Do Not Attempt Resuscitation' order. Nurses should also determine whether the patient wishes to donate their organs, tissues or body. Nurses must be familiar with relevant policies and procedures, and also the legislation applicable.

Nurses should recognise when a patient has died. In the UK, death is recognised to have occurred when: 

  • The pupils become fixed and dilated.
  • There is an absence of heart sounds.
  • There is an absence of respiratory effort.
  • There is no pulse.

Care of the patient after death

Nurses need to clean and prepare the body for funeral or other post-death activities. Ideally, this should occur within the first two to four hours after death, to preserve the person's appearance, condition, dignity and ability to donate their body or body tissues (if they choose to do so). This involves a number of important considerations:

  • Involving the person's family / carers / significant others, if they wish.
  • Following manual handling guidelines when moving / repositioning the patient.
  • Laying the deceased on their back, straightening their limbs, placing a pillow underneath their head and closing their eyes.
  • Tidying the patient's hair, and arranging into a preferred style (if this is known).
  • Male patients should not have their facial hair shaved too soon after death, as this can cause bruising.
  • If the patient's jaw is slack, it may be supported with a pillow or rolled towel.
  • Equipment should be removed from the patient; however, if the death is to be investigated by the coroner, all equipment should remain in place.
  • Cannulas, drains and catheters are usually left in-situ and capped; this prevents the leakage of body fluids.
  • Jewellery may be removed or left in place, as per the person's wishes; if it is removed, it must be clearly labelled, securely stored, and returned to the appropriate people at the earliest opportunity.
  • Leakages should be contained using strategies such as suctioning and positioning.
  • All exuding wounds should be covered with absorbent dressings.
  • If the patient is incontinent post-death, pads / pants should be used to absorb leakage.
  • The person's body should be cleaned, and dressed in clothes of their choice.
  • The person's body must be clearly identified by a name band on the wrist / ankle.
  • The person's body must be transferred to a mortuary, funeral home or other appropriate location as soon as is practically feasible.

Standard pathogen control precautions are essential. Nurses should be familiar with policies and procedures for caring for deceased people in a hygienic manner.

Care of a person's body should be carried out with dignity and respect. This includes ensuring that wishes for post-death care are carried out. In caring for the person's body after death, nurses should recognise that the body undergoes a number of natural processes following death:

  • Livor mortis: blood collects in the dependent vessels at the bottom of the body, and purple-red discolouration becomes evident.
  • Algor mortis: the patient's body cools.
  • Rigor mortis: within two to six hours of death, the patient's muscles begin to stiffen. This usually lasts between 24 and 48 hours.

Communication and documentation are important. The medical practitioner primarily responsible for the person's care must be promptly informed. The fact of the person's death must be verified, and a Medical Certificate of the Cause of Death can then be issued. Nurses must complete written documentation, usually in the patient's notes, including:

  • The time and location.
  • The people present.
  • The nature of the person's death.
  • Details about any relevant devices used or treatments provided.
  • Any concerns, including those raised by the person's family / carers / significant others, should be noted.

Sometimes a person's death may be investigated by a coroner, and / or a person's body may require post-mortem examination. In both cases, the care of a person's body following death may differ. Nurses should review relevant policies and procedures. 

Conclusion

Nurses caring for patients nearing death are required to provide particularly focused care. A rapidly-changing clinical situation, in combination with considerable psychological demands requires nurses to be highly competent, committed and compassionate. Enabling patients to die with dignity, in comfort and in the place of their choice are key skills for nurses. In this chapter of the module, you have studied the care of the patient and their family / carers / significant others in the immediate end-of-life period, and during and after their death. In completing this chapter, you are equipped with the knowledge and skills necessary to provide high-quality palliative care to a person at their immediate end-of-life, and during and following their death.


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