Nurses Belief's About Family Presence and End of Life


End of Life and Nursing Practice

One of the most difficult situations in nursing practice is that, despite the best efforts, some patients will die.  The death may be due to the diseases like cancer and HIV or various other factors.  The patients who have to die are called terminally ill patients.  These are those ‘nothing more can be done patients who need the comfort and care of everyone until their death and have a right to safeguard their dignity. The concepts of Palliative care and Hospice have primarily evolved only to meet the needs of these terminally ill patients. Palliative care is the comprehensive care for patients whose disease is not responsive to cure and hence are terminally ill.  Hospice is a coordinated programme of inter disciplinary care provided primarily in the home of the terminally ill patients. But end of life is always a complex process that involves not only the patient but also the patient's family. Patients and their family have numerous questions to nurses and answering them involves sensitive disclosures. Denial on the part of the patient and family members about the seriousness of terminal illness has been a barrier to discuss about end-of treatment options (Kubler-Ross, 1969). Research studies have confirmed that patients went information about their illness and end of life choices (McSkimming, 1994) and most deaths in the intensive care unit are now preceded by do not resuscitate orders, which are regarded by some as a way to make death more humane and respect patient autonomy (Cardozo, 2005).


Disclosures like death have severe psychological implications. The understanding of the problems related to such disclosure of information has drawn lots of research studies. A qualitative analysis of the information needs of nurses who care terminally ill cancer patients has shown that information is a key area in terms of care giving, in order to provide individualized care. The study has highlighted the complexity of understanding information needs and shows the role of a nurse as a sensitive mediator of information (Rose K.E. 1999). It is alleged that healthcare professionals often censor information pertaining to patient condition to protect their families from the bad news of a prognosis. This is based on an assumption that what people do not know does no harm. This attempt to protect patients and family from the reality of the disease creates great difficulties for the patients in terms of anxiety, fear and confusion (Fallow field et. al, 2002). A comparative study of communication in end of life cancer care in three European countries has identified factors associated with problematic communication. Three components of communication were evaluated in the last week of the patient’s life, vizcommunication between the patient and his family, communication between the patient and health care team and communication between health care professionals. The study has shown that communication between patient and family is a more serious problem in the last week of life than the other two components (Irene, 2002).

Hence, a nurse needs to be sensitive and concerned about the situation allowing the patient family to reflect and react to the situation. The process begins when the patient and his / her family receive the bad news about the terminal illness. The family’s fear of losing their loved ones often results in conflicts, which requires nurses to spend more time and energy. But, the barriers of time constraints and excessive workload in a nurse’s life have to be taken into account while discussing this problem. (Namasivayam et al, 2005).  The experience of seven registered nurses caring for families of the terminally-ill in Western Australia has been documented recently (Guzman, 1999). This Descriptive phenomenology based study using the Colaizzi method for data analysis and Husserl’s exploration for description has shown that the nurses are confronted not only by the family emotions but also their own. 

Anticipating grief is a phenomenon where people who fear death of a close relative begin grieving before the loss occurs. Nursing can provide comfort for the close relatives especially spouses of terminally ill patients by effective communication. Maintaining an effective dialogue is important with the relatives of the terminally ill. (Youll, 1989).

A study on Japanese nurses perceptions about disclosure of information at the patient’s end of life (Konishi, 1999) has brought to light the traditional ethical conflicts regarding the issue.  A survey involving 147 nurses using a questionnaire brought to focus that information disclosure at the end of life is also one of the most debated ethical issues in Japan. The conflict of non-disclosure of death information of the terminally ill has of course created tensions causing a drift between those who believed in strict traditional values and those who adapted to Western values, as nurses are perceived as keepers of family secrets in Japan.  Another interesting aspect of this often centres on the withdrawal of treatment. There is a lot of conflict that goes on between the patient, family and the doctors on this problem. The management of terminally ill patients who are unable to maintain their own hydration, or who express a wish to discontinue artificial hydration, is a significant controversial topic among healthcare professionals, patients and families. In some cases, the patient wants to withdraw the treatment such as close monitoring, Intravenous infusion, antibiotics, but the family want to carry on with the treatment.


Further, families often view initiation of palliative care as “giving up” too early, which means that only a good and mature communication can being them to reality (Guzman, 1999). The nurse, acting as patient advocate, has to strike an ethical and legal balance between the medical decision, patient decision and family in end of life nurse care.


  • Fallow field LJ (2002). Truth may hurt but deceit hurts more: communication in Palliative care. Palliative Medicine, 16 (4).
  • Guzman Terri (1999). Taking away death’s sting; Hospice links acute palliative care,’ Nursing Spectrum, Nov 15.
  • Hjorleifsdottir E with terminally ill cancer patients and their families. Nurse Educ Today 20 (8), 646-53.
  • Irene J. Higginson (2002). Communication in End-of-life Cancer care: A comparison of Team Assessments in three European countries. Journal of Clinical Oncology. 20 (17), 3674-82.
  • JW Youll (1989) ‘The bridge beyond; strengthening nursing practice in attitude towards death dying and the terminally ill and helping the spouses of critically ill patients. Intensive Care Nurses.5 (2), 88-94.
  • Kathleen Dunne Palliative care for patients with cancer: district nurses experiences.  Journal of Adv. Nurs 50 (4), 372.
  • Konishi Emiko nurse’s perceptions about disclosure of information at the patient’s end of life. Nursing and Health Sciences 1(3), 179.
  • Kubler – Ross E (1969)“On death and dying”, Macmillan New York.

  • Lesley-Ann Maxwell (2005) Purposful dehydration in a terminally ill cancer patient
    British Journal of Nursing,14(24):1117 – 1119.                                                                                
  • Mc Skimming S.A, Super, A., Driever, M.J, Schoessler, M., Franey S.G & Fonner E (1997). Living and Healing during life–threatening illness. Portland.
  • Namasivayam Padmavathy (2005). The challenges of carrying the families of the terminally ill, nurses lived experience. Contemporary Nurse, 19(2) : 169-180.
  • Rose K.E (1999) Qualitative analysis of the information needs of informal carers of terminally ill cancer patients. Journal of Clinical Nursing, 8 (1).
  • Copyright 2007- American Society of Registered Nurses (ASRN.ORG)-All Rights Reserved


Articles in this issue:


  • Masthead

    Editor-in Chief:
    Kirsten Nicole

    Editorial Staff:
    Kirsten Nicole
    Stan Kenyon
    Robyn Bowman
    Kimberly McNabb
    Lisa Gordon
    Stephanie Robinson

    Kirsten Nicole
    Stan Kenyon
    Liz Di Bernardo
    Cris Lobato
    Elisa Howard
    Susan Cramer

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