Chapter 9: End of Life Management

Introduction

Nurses caring for patients who are entering the last phase of their illness, and for whom life expectancy is very short (i.e. days), are required to provide particularly focused care. A rapidly-changing clinical situation, in combination with considerable psychological demands (both on the patient and their family / carers / significant others), requires nurses to be highly competent, committed and compassionate. Enabling patients receiving palliative care to die with dignity, in comfort and in the place of their choice are key skills for nurses working in palliative care settings. In this chapter of the module, you will study care of the patient and their family / carers / significant others in the immediate end-of-life period, and during and after their death.

A supportive environment at the end of life

As described throughout earlier chapters in this module, it is important for nurses working in palliative care settings to support people to identify, and to remain in, their preferred place of death. In the United Kingdom (UK), most people prefer to die at home; however, up to 25% of people may prefer to die in a palliative care hospice or residential nursing home. In addition, many people receiving palliative care in the UK die in hospital. Review the following table, which lists some of the various advantages and disadvantages for each setting:

A patient's preferred location of death often depends on the type of disease they have, their symptom burden, their previous experiences with care in different settings, and social factors - including the level of support they receive from their family / carers / significant others. It is also important to bear in mind that people may also change their minds about their preferred place to die as their disease progresses. Although it is crucially important that nurses working in palliative care settings ask people where they wish to die, this can be a challenging conversation to initiate. It should be first approached early in the process of planning palliative care for the patient, and documented in the patient's advance care plan. Patients should be involved in decisions about the place where they die for as long as possible, and changes to their plans should be accommodated wherever possible.

Regardless of the location in which a person dies, it is important that the environment is a supportive one. This requires palliative care nurses to think about factors such as:

• Aiding the patient's family / carers / significant others to remain involved in the patient's care, to the extent that they and the patient wish.
• Respecting and fulfilling, to the greatest extent possible, the patient's end-of-life rituals (these will be discussed in detail in later sections of this chapter).
• Ensuring rooms have sufficient space for visitors, heath care equipment, and resources necessary to meet the patient's spiritual and cultural needs.
• Ensuring rooms are comfortable (e.g. in terms of temperature, lighting, etc.), and that they facilitate the patient's privacy, confidentiality and dignity.

Supporting a person's family / carers / significant others

In addition to supporting a patient, nurses working in palliative care settings must also consider the importance of supporting the patient's family / carers / significant others. In particular, nurses should consider the amount of information a patient's significant others wish to be given about the patient's condition. Some people prefer detailed information about all aspects of the patient's condition and their impending death, whereas other people prefer to receive no information at all. Clarifying this with the people present is important; for example, a nurse may ask: "Would you like me to explain what is happening with [patient's name], or would you prefer us to just go about providing care to [patient's name]?"

When supporting a person's family / carers / significant others at the end-of-life and during death, nurses working in palliative care settings must also consider the importance of preparing these people 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.

In particular, a patient's family / carers / significant others must be provided with explanations about the goals of palliative care in the terminal phase of life - that is, to promote the person's dignity and comfort, including through the relief of their symptoms. A person's family / carers / significant others often have a deep need to feel 'helpful' during the person's death, and it is important for nurses to communicate that their contribution is valued. A person's family / carers / significant others should be reassured that they and the person will not be left alone during the death process (unless they wish this to be the case).

It is important for nurses working in palliative care settings to remember that many people have little experience with dying and death - and, therefore, about what to expect. A patient's family / carers / significant others should also be provided with information about the physical changes that occur during death. These changes - which include changes in the colour and temperature of the person's skin, in the quality of their pulse, and in their respiratory patterns, etc. - can be distressing to witness. People should be reassured that these are normal and natural changes, and that efforts will be made to ensure the patient is comfortable as they occur.

A patient's family / carers / significant others should be assessed by the nurse for signs that they are having difficulties coping with the situation in which they find themselves. This includes considering each person's:

• Physical needs, including their level of fatigue, etc.
• Psychological needs, including experiences of loss, grief and depression, etc.
• Social needs, including their level of support, financial / accommodation needs, etc.

Supporting a person's family / carers / significant others involves providing access to relevant professionals to meet their needs; in particular, they may require professionals who can provide necessary assistance in their management of loss, grief and bereavement. These topics will be described in detail in the next chapter of this module.

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

People have a variety of different religious and spiritual beliefs - and associated attitudes, values and rituals - which may impact on the type of palliative care they receive. It is important that nurses ask about beliefs and rituals relevant to a person's palliative care; this is crucial to the delivery of person-centred palliative care services. Again, it can be challenging for nurses to raise these issues with patients - nurses may do so by asking, for example:

• Can I ask you what your faith (or beliefs) mean to you at this time of your life?
• Can you explain to me what you as a Jewish (etc.) person want at this time in your life?

Review the following table, which explains some of the rituals associated with death and care of the body for some of the common religious groups in the UK:

Remember: it is important that nurses working in palliative care settings do not assume they 'know' a person's wishes or rituals and care of the body, just because a person identifies themselves as belonging to a particular culture or religion. Nurses must always ask a person about beliefs and rituals relevant to their palliative care.

Care during death in the palliative care setting

You studied the pathophysiological changes which occur at the end of life, including signs that a person's death is imminent, in detail in a previous chapter of this module; you should revise this chapter now, if required. As described in that earlier chapter, it is important that nurses working in palliative care settings continue the systematic physical assessment of a patient right up until their death. This is done with the aim of relieving a patient's symptoms promptly - however, it must be highlighted that in doing so, avoiding unnecessary intrusion is crucial. When caring for a person at the end of life and during their death, nurses should consider:

• Anticipating the patient's future care needs, including the likelihood of any distressing symptoms which may occur at the time of the person's death. Medications, equipment and other resources to manage these symptoms effectively should be on-hand; this is particularly important if the person is being cared for at home.
• Ensuring the patient is appropriately positioned, to ease their discomfort. This includes positioning the patient in such a way as to facilitate their respiration, and also to relive pressure on different parts of their body. As you saw in a previous chapter of this module, frequent repositioning is often important in enhancing the comfort of a patient receiving palliative care.
• Mouth care - as poor oral hygiene, dryness and odour are common in the last days of life. Nurses should consider the importance of 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.
• 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 (where appropriate), and assessing for / managing retention of urine and constipation.
• The provision of artificial nutrition and hydration. The legal and ethical aspects relevant to the provision of artificial nutrition and hydration to a patient in the terminal phase of life were described in detail in an earlier chapter of this module; you should revise this section now, if required. It is important to remember that in the provision of artificial nutrition and hydration, nurses working in palliative care settings must be guided by the patient's wishes (including those expressed in their advance care planning documentation), and the wishes of their family / carers / significant others (as appropriate).
• The withholding and withdrawal of life-sustaining treatments. Again, the legal and ethical aspects relevant to the withholding and withdrawal of life-sustaining treatments in the care of a patient in the terminal phase of life were described in detail in an earlier chapter of this module. Again, nurses working in palliative care settings must be guided by the patient's wishes (including those expressed in their advance care planning documentation), and the wishes of their family / carers / significant others (as appropriate).
• The ongoing management of symptoms. There are five symptoms which, regardless of the specific type of disease process a person is experiencing, 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. You studied the management of each of these symptoms in detail in a previous chapter of this module; you should revise this section now, if required.

It is important for nurses working in palliative care settings to recognise that people may experience a range of 'crises' or 'emergencies' in their final days of life. Such situations include (but are not limited to):

These are all manageable problems and, therefore, they should not be causes of a person's death unless a person has specifically requested not to receive supportive intervention. These 'crises' or 'emergencies' should be actively managed using the same nursing care as would be applied in any other health care setting. This type of care is administered with the fundamental aim of promoting the person's comfort.

As a person's death approaches, it is essential for nurses working in palliative care settings to be clear about whether they are expected to attempt cardiopulmonary resuscitation [CPR] following the person's death. In most cases, a patient receiving palliative care will have a 'Do Not Attempt Resuscitation' [DNAR] order which authorises health care staff to withhold CPR should a patient's condition deteriorate and so allow their natural death. Nurses should also consider whether the patient has an implantable cardiac defibrillator; if so, this will require deactivation prior to the patient's death.

Nurses working in palliative care settings must also be clear about whether the patient wishes to donate their organs, tissues or body to medicine and / or science - and also about their family's / carer's / significant others' views about organ donation, as it is these people who will give final consent. It is important to highlight that, in the UK, organ donation can only take place in acute hospital settings under strict criteria, however tissue or body donation can occur in any setting. Nurses working in palliative care settings must ensure they are familiar with their organisation's relevant policies and procedures, and also with the legislation applicable in the region in which they practice, in relation to organ, tissue and body donation, and consent for these processes.

It is important for nurses working in palliative care settings to recognise when a patient has died. In the UK, death is recognised to have occurred when: 

Care of the patient after death

You studied some of the rituals associated with the care of a person's body after their death in a previous section of this chapter; you should revise this section now, if required. One of the palliative care nurse's most important roles in caring for a patient's body after their death is cleaning and preparing 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). Care of a person after their death involves a number of important considerations:

• Involving the person's family / carers / significant others, if they wish; this includes providing these people with suitable time to spend with, and say goodbye to, the person, and opportunities to be involved in their post-death care.
• Following manual handling guidelines when moving / repositioning the patient.
• Laying the deceased on their back, straightening their limbs (if possible), placing a pillow underneath their head and closing their eyes (by applying light pressure).
• Cleaning the mouth and replacing the dentures, if relevant. If the patient's dentures cannot be replaced, these must be placed in a clearly-labelled receptacle.
• 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; this is generally completed by the funeral director, if required.
• 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, note that if the patient's 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 is done to prevent the leakage of body fluids. These will be removed by the funeral director.
• 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 possible opportunity.
• Leakages, particularly from the oral cavity and / or trachaeostomy, should be contained using strategies such as suctioning and positioning.
• All exuding wounds, including cannula sites, 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.

It is essential for nurses working in palliative care settings to remember that although a patient has died, the pathogens present on and in their body have not. Standard precautions - including gloves, gowns and goggles - for all those involved in the care of a patient's body is an essential consideration, particularly if there are considerable amounts of body fluid present (i.e. the patient is incontinent post-death). It is important that nurses working in palliative care settings are familiar with their organisation's policies and procedures for caring for deceased people in a hygienic manner. This includes the timeframe in which the body should be transferred to a cooled mortuary to enhance its preservation.

It is also essential that nurses working in palliative care settings ensure that the care of a person's body is carried out with dignity and respect. This includes, for example, ensuring the client is comfortably positioned, that they remain appropriately covered, that spills of body fluids are cleaned promptly, and that their wishes for post-death care are carried out to the greatest extent possible. If they feel comfortable doing so, nurses may also choose to continue interacting with the patient after death - for example, by speaking to the patient when providing care. Compassionate care which continues following the patient's death is a key characteristic of high-quality palliative care.

In caring for the person's body after death, it is important for nurses working in palliative care settings to recognise that the body undergoes a number of natural processes following death:

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

Nurses working in palliative care settings must realise that, as with all palliative care, care of the person after death usually involves an interdisciplinary team. Members of this interdisciplinary team may include the patient's nurses and doctors, porters, mortuary and funeral company staff, pathologists, coroners and / or bereavement teams. As described in detail in an earlier chapter of this module, it is important that nurses working in palliative care settings understand the various different roles and responsibilities of each of these professional groups.

Once a patient has died, communication and documentation are important considerations for nurses working in palliative care settings. The medical practitioner primarily responsible for the person's care must be promptly informed about their death. A person, usually an appropriately-trained doctor or nurse, must attend the patient to verify the fact of their death, and a Medical Certificate of the Cause of Death can then be issued. Nurses must complete written documentation, usually in the patient's notes, which provides information about:

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

It is important that nurses are aware of situations where: (1) a person's death may be investigated by a coroner, and / or (2) a person's body may require post-mortem examination. In both cases, the care of a person's body following death - as described throughout this chapter of the module - may differ. Nurses should be guided by their organisation's relevant policies and procedures.

Conclusion

As you have seen throughout this chapter, nurses caring for patients who are entering the last phase of their illness, and for whom life expectancy is very short (i.e. days), are required to provide particularly focused care. A rapidly-changing clinical situation, in combination with considerable psychological demands (both on the patient and their family / carers / significant others), requires nurses to be highly competent, committed and compassionate. Enabling patients receiving palliative care to die with dignity, in comfort and in the place of their choice are key skills for nurses working in palliative care settings. 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.

'Hands-on Scenario'

Care of a person at the end of life and after death

Maryanne is a nurse working in a palliative care community outreach service in London. One of her patients is Mrs Brown, a forty-nine-year-old woman with end-stage amyotrophic lateral sclerosis (ALS). Throughout her long period of palliative care, Mrs Brown has received care in her own home, as per her and her family's preference. Her husband has been her primary carer, and palliative care nurses, including Maryanne, visit once or twice daily to provide assistance.

In the past week, Mrs Brown's condition has declined rapidly; she becomes unable to mobilise or communicate, her urine production declines markedly, and she experiences significant respiratory difficulties (which are managed using continuous oxygen and opioid administration). Early one morning, Maryanne receives a call from Mr Brown stating that Mrs Brown has become unconscious and is experiencing periods of apnoea. When Maryanne attends and assesses Mrs Brown, it becomes apparent that Mrs Brown's death is imminent.

In an honest but gentle and respectful way, Maryanne tells Mr Brown that she believes Mrs Brown will likely die in the following few hours. She assures Mr Brown that she will stay with them and continue to provide care to promote Mrs Brown's dignity and comfort during her death. The care she provides includes:

• Assessing Mrs Brown's future care needs, including the likelihood of distressing symptoms such as respiratory distress as her death approaches. Maryanne checks that there is sufficient oxygen in the portable cylinder, and opioid medications, to support Mrs Brown.
• Positioning Mrs Brown in a semi-recumbent position, to facilitate respiration and relieve pressure on her sacrum.
• Performing oral hygiene, including suctioning of upper airway secretions, regular brushing of the oral surfaces with a soft brush, and helping Mrs Brown to take sips of water.
• Bladder care, including changing soiled clothing and bedding when Mrs Brown is incontinent, and using a pad to manage further episodes of incontinence.
• Continuing the administration of oxygen and opioids, as prescribed by Mrs Brown's medical doctors, with the aim of relieving her dyspnoea and promoting comfort.

Maryanne is conscious of respecting Mr Brown's role as Mrs Brown's primary carer. She provides him with opportunities to become involved in tasks and activities he prefers to do - such as suctioning respiratory secretions and performing oral hygiene, etc. Furthermore, she is unobtrusive in the care she provides, allowing Mr and Mrs Brown to spend quality time together.

As Mrs Brown's death approaches, Maryanne communicates with the appropriate people. As per her organisation's policies and procedures, she places a telephone call to her supervisor, Mrs Brown's general practitioner and neurologist, and other key members of Mrs Brown's multidisciplinary care team, alerting them of the situation. She also commences end-of-life documentation, which provides a record of Mrs Brown's death.

Whilst they are caring for Mrs Brown, Maryanne begins to prepare Mr Brown with information about the physical changes that are likely to occur during Mrs Brown's death - including changes in the colour and temperature of Mrs Brown's skin, in the quality of her pulse, and in her respiratory patterns. Mr Brown is particularly alarmed about changes in Mrs Brown's respiratory effort, including the presence of Cheyne Stoke breathing, however Maryanne assures him that these are normal and natural changes. She also explains that, because of the continuous oxygen and opioid administration, Mrs Brown is not suffering respiratory distress. This seems to alleviate Mr Brown's concerns.

After six hours of constant care, however, Maryanne realises that Mr Brown is fatigued and is becoming very distressed. She encourages him to spend a few minutes taking care of himself - including contacting relatives (who live internationally), and eating a small meal she has prepared for him. As he rests, Mr Brown begins to reminisce about how he and Mrs Brown met, the import / export business they operated for many years together, and their world travels. Although she is unconscious, Mrs Brown occasionally smiles as she listens to Mr Brown speak about these memories.

Mrs Brown's death occurs later that afternoon. Maryanne recognises that death has occurred when: 

At Mr Brown's request, Maryanne leaves him and Mrs Brown alone for a period of time. During this time, Maryanne informs her supervisor and members of Mrs Brown's multidisciplinary health care team that her death has occurred. Mrs Brown's general practitioner agrees to attend the home promptly, to verify the fact of her death and issue a Medical Certificate of the Cause of Death. Maryanne also completes the required written documentation, which includes information about:

• The time and location of Mrs Brown's death.
• The names of the people present at Mrs Brown's death.
• The nature of Mrs Brown's death.
• Details about any relevant devices used or treatments provided to Mrs Brown.

Maryanne knows that Mrs Brown's death will not be investigated by a coroner; therefore, she begins the process of caring for Mrs Brown's body. Although she provides him with opportunities to become involved, Mr Brown chooses not to, preferring to simply sit and speak with his wife. Unobtrusively and respectfully, ensuring she preserves Mrs Brown's dignity and uses appropriate standard precautions, Maryanne:

• Cleans Mrs Brown's mouth and eyes, and brushes her hair in her preferred style.
• Continues to control leakages from Mrs Brown's mouth and bladder.
• Supports Mrs Brown's jaw with a rolled towel.
• Removes the face mask delivering oxygen to Mrs Brown.
• Disconnects and caps the cannula delivering opioids to Mrs Brown.
• Removes Mrs Brown's jewellery (e.g. wedding ring, earrings and necklace), at Mr Brown's request, and ensures this is labelled, stored securely and documented.
• Sponges and dries Mrs Brown's body, and dresses her in fresh clothes of her choice.
• Ensures Mrs Brown's body is clearly identified by a name band on the wrist.
• Arranges for transport of Mrs Brown's body to a funeral home, as per Mr Brown's request.

At the end of the day, when all these tasks are complete, Maryanne spends a few extra minutes with Mr Brown. She allows him time to debrief about his experience, where he explains Mrs Brown's death is "a bit of a relief" because she "suffered long enough", but that he was still "devastated" and concerned about coping alone. Maryanne discusses loss, grief and bereavement with Mr Brown, and assures him that she and her service would continue to be available to support him during this difficult period. Maryanne also provides Mr Brown with a variety of other resources which he may access for support - both immediately, and in the following days and weeks.

Reference list

Department of Health. (2008). End of Life Care Strategy. Retrieved from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/136431/End_of_life_strategy.pdf

Ellershaw, J & Ward, C (2003) Care of the dying patient: The last hours or days of life, British Medical Journal, vol. 326, no. 7379, pp. 30-34.

Faull, C., de Caestecker, S., Nicholson, A. & Black, F. (Eds). (2012). Handbook of Palliative Care (3rd ed.). Hoboken, NJ: Wiley-Blackwell.

Greenway, K & Johnson, P (2012) How to care for a patient after death in the community, Nursing Standard, vol. 30, no. 37, pp. 34-46.

Marie Curie Cancer Care. (2013). End of Life: A Guide. Retrieved from: https://www.mariecurie.org.uk/globalassets/media/documents/how-we-can-help/being-there-for-someone/preparing-for-the-end-of-life/end-of-life-guide.pdf

Matzo M. & Witt Sherman, D. (Eds). (2010). Palliative Care Nursing: Quality to the End of Life (3rd ed.). New York, NY: Springer Publishing Company.

NHS National End of Life Care Program. (2011). Guidance for Staff Responsible for Care After Death (Last Offices). Retrieved from: http://www.leedspalliativecare.co.uk/wp-content/uploads/2014/08/Care-After-Death-Guidance.pdf

Royal College of General Practitioners. (2015). Updated Guidance for Professionals Who Provide Care After Death. Retrieved from: http://www.rcgp.org.uk/news/2015/april/updated-guidance-for-professionals-who-provide-care-after-death.aspx