Last days of life

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23 Last days of life

Case update

Michelle is becoming increasingly sleepy and less responsive. The staff on duty at night time report that she is restless and appears frightened when Simon has gone home. After discussing this with Simon, he arranges for a friend to stay with the children at home and he spends the next few nights with her to help her settle. It has been decided at a team review to offer Michelle and Simon a bed on the specialist palliative care ward. Simon is taken to look at the ward by the Macmillan nurse and feels it is the right place for Michelle. It has a separate room where he can sleep and the children can play. He is hoping that once she is more settled, she may be able to go home. Michelle is very frightened at what is happening and finding it difficult to make any decisions.

Terminal agitation

Consider how Michelle’s fear may be addressed. What might be causing this fear?

List all the nursing care interventions that can support a person who is distressed in the last days of life. You might want to refer back to chapter 16 where we looked at spiritual and emotional distress and terminal agitation in the last days of life. Also reflect back to a patient you might have looked after on a previous placement who was distressed. Make a list of the care interventions that helped in this situation and then consider if they would be appropriate in Michelle’s care.

NMC Domain 1: 1.1; 1.2

NMC Domain 2: 2.1; 2.3; 2.4; 2.5

NMC Domain 3: 3.1; 3.2; 3.3; 3.6; 3.7

Further reading

Forbes C. Management of terminal delirium: a literature review and case study. Journal of Community Nursing. 2007;21(4):4–9.

Kyle G. Terminal restlessness: causes, assessment and management. End of Life Care. 2009;3(3):8–12.

Namba M., Morita T., Imura C., et al. Terminal delirium: families’ experience. Palliat. Med.. 2007;21:587–594.

Points to consider

The management of terminal agitation is an important part of managing last days of life. The way a person dies can have a big impact not only on relatives but also other patients and the care team.

Psychological and spiritual support

Consider the support Simon will need. Who might be the best person to provide this?

Refer back to Chapter 7 where you were introduced to a range of roles within cancer services. Use this list to pick out who might be able to offer Simon support. Find out if the specialist palliative care ward/unit at your local hospital has any leaflets or information sheets that can be given to relatives. Reading through this information is a good way of being able to answer questions and offer support at the appropriate time. Consider how the information about Michelle being a ‘lapsed catholic’ might help in the ways distress might be managed.

NMC Domain 1: 1.1; 1.2; 1.5; 1.6

NMC Domain 2: 2.1; 2.4; 2.5

NMC Domain 3: 3.1; 3.3; 3.7; 3.9

NMC Domain 4: 4.4; 4.7

Further reading

Borg L., Noble H. Psychological issues associated with end stage cancer patients. End of Life Care. 2010;4(2):8–12.

Byrne M. Spirituality in palliative care: what language do we need? Int. J. Palliat. Nurs.. 2008;14(6):274–280.

Royal College of Nursing. Spirituality in nursing care. Online. Available at:. 2010. http://www.endoflifecareforadults.nhs.uk/publications/spirituality-in-nursing-care (accessed May 2011)

Points to consider

Throughout Michelle’s diagnosis, she and Simon have made decisions together, so this is going to be a particularly difficult and lonely time for Simon to make decisions on his own. Sometimes the offer to sit with someone quietly can be a great sense of support and reassurance. Giving information clearly and sensitively will help the right decisions to be made. Leaflets can often answer simple questions quickly. At times of distress, information given is not always remembered so leaflets can be useful for a person to refer back to at a later date.

Case update

The following day, Michelle is transferred to the specialist palliative care ward where it has been agreed by the care team that Michelle is now moving into the last days of her life. The consultant agrees with the nursing staff and, after discussions with Simon, the Liverpool Care Pathway (LCP) is started. Her pain and anxiety will be managed by setting up a syringe driver since Michelle is no longer able to swallow her medication. This driver is effective in managing her pain and distress.

Using the Liverpool Care Pathway

Go to the Liverpool Care Pathway proforma found on the following Website:

http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/ (accessed May 2011).

Complete the assessment of Michelle’s current condition using the information you already have. As part of this assessment, you will be considering Michelle’s spiritual and psychological needs, as well as the needs of Simon and other family members.

Make a list of what you need to consider when assessing her spiritual needs. From the admission documentation, you are aware that Michelle is a lapsed Catholic. Consider how you might address this with (a) Michelle and (b) Simon.

Now refer back to page 129 where we explored the concept of ‘assessment’. Using a blank Roper, Logan and Tierney assessment tool, map out how Michelle’s deteriorating condition will impact on each of her activities of living and list the nursing interventions that can assist in her holistic care to achieve comfort and maintain dignity.

NMC Domain: 1.1; 1.2; 1.5; 1.6

NMC Domain 2: 2.1; 2.2; 2.4; 2.5

NMC Domain 3: 3.1; 3.2; 3.7; 3.9

NMC Domain 4: 4.3; 4.6

Further reading

Go back to the above Website and select a last days of life care pathway for a specific disease group to read up on. This is a good resource to be familiar with when you are caring for people on non-cancer pathways.

Points to consider

Remember that religious need does not mean spiritual need. Always make a spiritual assessment ensuring the patient is assessed as a whole person. Religious need is just one of the aspects of care that may be important. Remember that every person has spiritual needs. Although a patient might not be practising the religion of their upbringing, it is important to be aware of this information. In this situation, it is worth having a conversation with Michelle and Simon to see if either of them want to speak with a chaplain or priest. It may be important to be aware that her parents or sister may require the support of a priest.

Case update

Six days later, Michelle dies peacefully with Simon and her children present. Michelle’s parents and sister arrived at the ward 2 days previously and have been helping Simon with the children.

Care at the time of death

Consider the immediate actions that need to be taken now Michelle has died. What are the important things you know about Michelle that you are going to consider? Make a list of these.

You are aware Michelle is a lapsed Catholic. If you are not familiar with the rituals around dying and death for a person practising as a Catholic, look up on the Ethnicity Online Website:

http://www.ethnicityonline.net/ (accessed May 2011).

Note down any specific rituals that will be important before, at and after death. How do you feel at the thought of performing the last offices? What do you know about Michelle that will be important for whoever does this role?

NMC Domain 1: 1.1; 1.3

NMC Domain 2: 2.4; 2.5

NMC Domain 3: 3.4; 3.9

Further reading

National End of Life Care Programme guidance for staff responsible for care after death, http://www.endoflifecareforadults.nhs.uk/publications/guidance-for-staff-responsible-for-care-after-death (accessed May 2011)

Points to consider

Privacy and dignity are of vital importance both for Michelle and her grieving family. It is important that family and friends feel safe to express their grief and given the time they need to spend with Michelle. The hospital chaplain is there to support staff as much as patients and you might want one to come to the ward to offer support to you and your team.

Care of self

You have cared for Michelle since she received her diagnosis in the outpatient clinic many months ago and have got to know her and her family well. Now make a list of the things you can do to support yourself and the other members of your team.

NMC Domain 1: 1.8

NMC Domain 2: 2.5; 2.6

NMC Domain 4: 4.4; 4.6

Further reading

Costello J. Talking about death, dying and the end of life. Int. J. Palliat. Nurs.. 2011;17(4):15.

Cooper J., Barrett M. Aspects of caring for dying patients which cause anxiety to first year student nurses. Int. J. Palliat. Nurs.. 2005;11(8):423–430.

Points to consider

You are not on your own with difficult feelings. We can all get emotionally attached and upset when a patient dies. This is not a sign of weakness and other member of the care team can provide valuable support both during the process and afterwards. Don’t forget the treat sheet you were introduced to on page 170. It can help to break the cycle of feeling upset about a patient or situation.

The final chapter in this case study takes Michelle on a completely different pathway. It is 5 years since Michelle was diagnosed and completed acute treatment for breast cancer. She has no evidence of cancer and has been attending follow-up care as an outpatient. She is now due to be discharged from the acute cancer setting. We explore the long-term effects of cancer and its treatment during the extended survivorship phase.

The National End of Life Care Programme Website has up-to-date information and publications on all aspects of end of life care and is a good starting point to search for local and national publications, policies and ways of working: http://www.endoflifecareforadults.nhs.uk/ (accessed May 2011).

healthtalkonline is a charity-run Website that shares patients’ experiences by facilitating them to tell their own story – many of these stories are presented in short film clips of 1–2 minutes. You can choose from a variety of headings including receiving bad news, cancer, and dying and bereavement: http://www.healthtalkonline.org/ (accessed May 2011).

St Christopher’s Hospice in London publishes End of Life Care four times per year. This is a journal for nurses who want to deliver best care to dying people at home, in care homes or in hospital: http://www.stchristophers.org.uk/ (accessed May 2011).

The National Council for Palliative Care is an umbrella organisation in England, Wales and Northern Ireland involved in all aspects of palliative and end of life care. It has a range of publications, news updates and views from the government, public and professional groups: http://www.ncpc.org.uk/ (accessed May 2011).

Related

Placement Learning in Cancer & Palliative Care Nursing A guide f