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End-of-life care: a community perspective

Angela Hall
RGN MSc BSc(Hons) DN PGCE RNT

Nurse Tutor
Swansea University
Wales

Primary care nurses usually have some involvement in caring for children and adults at the end of life, but caring for patients in their own homes is a complex area of care. Angela Hall explores the issues and how best to support patients

End-of-life care is provided for patients at the end stages of advanced, progressive and incurable conditions such as heart disease, stroke or dementia. These conditions create different patterns of dying; for example, specific organ failure, system failure or frailty and decline.

Regardless of the diagnosis or the patient's age, some fundamental principles and many aspects of nursing care at the end of life are universal. Usually, the children or adults concerned will have a history of multiple interventions and be known to primary care staff. Occasionally, however, the first contact is when the patient is dying. It is important, where feasible, to discuss end-of-life care in advance of the final days and this can include some assessment and anticipatory planning.

There may be an advanced directive agreed. This preparation means the patient's wishes can be established and the patient, and those who matter to them, can be as prepared as possible for the likely course of events and for the death. It is evident that the vast majority of patients prefer to die at home rather than in hospital; yet, many patients die in hospital or are transferred there in the final days or even hours of life.

For patients, the impact of advancing disease and impending death is vast and this type of care needs to be a priority. For many professionals who work in the community, caring for those who are dying in their own homes presents particularly difficult challenges. For example, the environment might be difficult, or the family and lay carer support limited, so nurses have to adapt to the circumstances. Community nurses often become central in providing care and ensuring dignity at end of life for those at home. The focus is on the holistic care of the patient, and community nurses find their care assessment incorporates caring for those people who matter to the patient.

Nurses also need to understand the impact that issues such as culture, ethnicity, religion and beliefs can have on end-of-life care. Being able to fulfil patients' and carers' wishes and ensure a good death when caring for those who are at the end of life in their own home can be a most rewarding experience for nurses. This stage used to be commonly referred to as tender loving care (TLC).

Policy context of end-of-life care
The Gold Standards Framework confirms that care is best given by disciplines based on patient need.1 The Department of Health has subsequently acknowledged that end-of-life care is variable nationally and a national end-of-life strategy that endorses the Gold Standards Framework has been formulated by the Department of Health.2

It is clear that end-of-life care provision and support in the community needs to be enhanced wherever possible. There is a variation on what nurses can offer in terms of this type of care. For example, different areas have variable access to resources; some areas lack 24-hour care, or have fragmented teams where communication and co-ordination are hindered. There might also be differences in the knowledge, skills and experience available in key aspects of care, such as pain and symptom control. Decision-making with regard to the end of life is usually medically led, but nurses often contribute their opinions.

In May 2010, following two years of consultation with healthcare professionals and patients, the General Medical Council (GMC) offered doctors further guidance on end-of-life care.3 This incorporates advice in relation to advance care planning and taking into account the patient's wishes; advice regarding children and infants; and issues around hydration and clinically assisted nutrition. It also includes advice on organ and tissue donation, as well as bereavement support. Importantly, the key principles of such policies are respect and dignity for the individual and the need to create opportunity for patients and families to talk about the care they want.

The change of care emphasis
Good end-of-life policy and practice guides health professionals so that relevant medical interventions and treatments are stopped. These items cease to keep comfort to a maximum. The burden associated with certain interventions and any lack of benefit at this stage of life will guide decisions.

There is usually a “do not resuscitate” order agreed. Some community health professionals who see their role as curing or controlling disease may struggle with this new emphasis; for example, when caring for younger patients. Similarly, some family members or friends may wish certain interventions to continue. These are issues community nurses will often have to address sensitively but appropriately, with nurses always acting in the patient's interests.

The end-of-life pathway
To help ensure the patient's care is appropriate in the last days of life many areas use an end-of-life care pathway. This is often based on the Liverpool Hospitals Care pathway for the end of life.4 The pathway provides an evidence-based guide for end-of-life care in the last days of life. The criteria for using the pathway is that the patient is dying, and although making a diagnosis of dying is sometimes difficult, usually at least two of the following signs are evident:

  • Bed bound.
  • Semi-comatose.
  • Only able to take sips of fluid.
  • No longer able to take tablets.

Once a patient meets criteria for the pathway they are holistically assessed and a care plan agreed. Usually re-assessment is completed by the nurse when visiting and at least every 24 hours. The end-of-life pathway documentation is designed to be multidisciplinary. The focus for community nurses is for holistic care based on need, although aspects of physical, psychological, social and spiritual care often become important. The clear focus is on making the patient comfortable and ensuring the patient receives care and the medications to control pain and other symptoms. There is a need for comprehensive evidence-based care.

The community nurse should perhaps be more proactive in care where feasible and, therefore, ensures that he or she anticipates what equipment is likely to be required and makes sure relevant items are prescribed ready.

Communication
There needs to be respect for patient autonomy and help for patients and those that matter to them in terms of adjustment to the changing prognosis. Establishing a conducive atmosphere where possible is helpful, and nurses should avoid being judgmental and remain professional. Ensuring information is only shared if appropriate and that the relevant records are kept accurately is important. Given the complexity of communication at this time nurses can ensure there are no misunderstandings evident while providing support and not overburdening with information. Simply listening and offering emotional support are vital aspects of end-of-life care.

Nurses have to deal with issues related to loss and often with complex strong emotions in family members. Community nurses are also in the position of being able to assess the complex family dynamic and sometimes may be able to ensure that unresolved relationship conflicts are sorted before death.

Community nurses are in the ideal position to assess the coping used by the patients and others involved to encourage them to use their particular support networks. Good communication and co-ordination of the care needed can do much to reduce anxiety and help create a rapport. This helps establish a therapeutic relationship where counselling skills can be also be used to help those involved adjust.

Hearing is normally the last sense patients lose, even when comatose, so it is logical that talking normally, clearly and calmly, explaining what is going on in the household and what care is being given, can be helpful. Playing music the patient has liked and avoiding upsetting conflict within the patient's hearing can also be a good idea.

Key aspects of communication 
Nurses good use of good verbal and non-verbal communication skills. Nurses need an ability to identify triggers for discussion that are raised by patients or family and to act on these triggers. Nurses need to develop a high level of self awareness. Being with is often appreciated rather than the nurse needing to do or say anything.

Being open and honest is essential. The important nursing interventions at the end of life In addition to interventions that ease symptoms and pain care based on need care might include management of incontinence, and aspects like hygiene and mouth care in order to keep comfort to a maximum. There is often an outline for appropriate medications in the end-of-life pathway and syringe drivers are frequently used.

Practical issues
Community nurses are able to advise on appropriate sources of help in relation to a range of issues, including income, childcare, wills and funeral planning, although hopefully, where possible, these issues will have been considered in the anticipatory planning.

Control of symptoms/sources of help and expert care
Additional information on the management of pain and other symptoms or aspects of care might include advice from others including the GP, such as the oncologist, hospital specialist doctors, the hospice, Macmillian nurses or palliative care nurses or Marie Curie other specialist nurses or professions allied to medicine, as well as children's palliative care nurses.

Community nurses need knowledge of the relevant policies, procedures and protocols related to their area. Nurses need to ensure the relevant policies are in place, eg, resuscitation and verification of death. End-of-life care does not stop at the point of death, so nurses need an awareness of what resources and support are available in the community in terms of bereavement support for example, so nurses are able to inform the patient's family and friends.

Support for staff in the community
Sources of emotional support for any staff if they need it might, for example, include others in the team, such as occupational health, staff counselling or Macmillan nurses. It might prove helpful to reflect on care given or any events that occur with an appropriate colleague. Community nurses need to identify in their individual performance review if they feel knowledge in end of life care is lacking and identify their training needs with managers. Care providers need to perhaps consider having some mandatory care of the dying training for staff. 

References
Gold Standards Framework. Available from: www.goldstandards framework.nhs.uk
Department of Health (DH). End of Life Care Strategy: Promoting High Quality Care for all Adults at the End of Life. London: DH; 2008. Available from: www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/d...
General Medical Council (GMC). Treatment and Care Towards the End of Life: good practice in decision making. London: GMC; 2010. Available from:www.gmc-uk.org/static/documents/content/End_of_life.pdf
Liverpool Care Pathway for the Dying Patient  (LCP). Available from: www.liv.ac.uk/mcpcil/liverpool-care-pathway