Managing awareness: negotiating and coping with a terminal prognosis.

This study examined the way in which a terminal cancer prognosis was negotiated by patients and their lay carers, and the complexities involved in managing a context of awareness. Individual semi-structured interviews were undertaken with 16 patients and 14 lay carers. These were transcribed verbatim and analysed using a grounded theory approach. The process started with being given bad news, when the concept of life was no longer open-ended. The need to maintain hope influenced the amount of information sought by patients and their families and was an important strategy in helping patients cope with the knowledge of their disease. Levels of awareness appeared to be influenced less by setting, than by the way the prognosis was managed within individual families. Difficulties facing patients and carers in knowing how to communicate with each other within a context of open awareness suggest that they need help in learning how to do this. Achieving an environment to enable this requires private space and staff skilled in enabling and facilitating the complexities of communication between patients and their carers.

[1]  P Maguire,et al.  Maladaptive coping and affective disorders among cancer patients , 1996, Psychological Medicine.

[2]  D. Field,et al.  Communication and awareness about dying in the 1990s , 1999, Palliative medicine.

[3]  S. Payne,et al.  Impact of witnessing death on hospice patients. , 1996, Social science & medicine.

[4]  L. Fallowfield,et al.  Giving sad and bad news , 1993, The Lancet.

[5]  V. Jenkins,et al.  Effective communication skills are the key to good cancer care. , 1999, European journal of cancer.

[6]  P Maguire,et al.  Helping health professionals involved in cancer care acquire key interviewing skills--the impact of workshops. , 1996, European journal of cancer.

[7]  Anselm L. Strauss,et al.  Awareness of Dying , 1966 .

[8]  C. Seale,et al.  Awareness of dying: prevalence, causes and consequences. , 1997, Social science & medicine.

[9]  D. Field.  Special not different: general practitioners' accounts of their care of dying people. , 1998, Social science & medicine.

[10]  K. Wilkinson.  The concept of hope in life-threatening illness. , 1996, Professional nurse.

[11]  T. Brewin.  Three ways of giving bad news , 1991, The Lancet.

[12]  S. Karlsen,et al.  'All the services were excellent. It is when the human element comes in that things go wrong': dissatisfaction with hospital care in the last year of life. , 2000, Journal of advanced nursing.

[13]  C. Vassilas,et al.  Telling the truth: what do general practitioners say to patients with dementia or terminal cancer? , 1998, The British journal of general practice : the journal of the Royal College of General Practitioners.

[14]  J. Aldridge,et al.  A longitudinal evaluation of a communication skills programme , 1999, Palliative medicine.

[15]  Slevin Ml.  Talking about cancer: how much is too much? , 1987 .

[16]  R. Buckman.  How to break bad news : a guide for health care professionals , 1992 .

[17]  Norbert Elias.  The loneliness of the dying , 1985 .

[18]  J. Ptacek,et al.  Breaking Bad News: A Review of the Literature , 1996 .

[19]  S. Timmermans.  Dying of awareness: the theory of awareness contexts revisited , 1994 .

[20]  E. Shelp,et al.  Denial in clinical medicine. A reexamination of the concept and its significance. , 1985, Archives of internal medicine.

[21]  C. Abraham,et al.  The WHO objectives for palliative care: to what extent are we achieving them? , 1995, Palliative medicine.

[22]  C. Hallett,et al.  The importance of 'knowing the patient': community nurses' constructions of quality in providing palliative care. , 2000, Journal of advanced nursing.

[23]  P. Maguire,et al.  Improve the counselling skills of doctors and nurses in cancer care. , 1988, BMJ.

[24]  D. Field.  Awareness and modern dying , 1996 .

[25]  Anselm L. Strauss,et al.  Awareness Contexts and Social Interaction , 1964 .

[26]  P. Yates.  Towards a reconceptualization of hope for patients with a diagnosis of cancer. , 1993, Journal of advanced nursing.

[27]  C. Heaven,et al.  Training hospice nurses to elicit patient concerns. , 1996, Journal of advanced nursing.

[28]  Anselm L. Strauss,et al.  Qualitative Analysis For Social Scientists , 1987 .

[29]  R. Sanson-Fisher,et al.  Breaking bad news: consensus guidelines for medical practitioners. , 1995, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[30]  R. Buckman.  Talking to patients about cancer , 1996, BMJ.

[31]  J. Aldridge,et al.  Nurse–patient communication in palliative care: an evaluation of a communication skills programme , 1998, Palliative medicine.

[32]  L. Fallowfield,et al.  The Medical Interaction Process System (MIPS): an instrument for analysing interviews of oncologists and patients with cancer. , 2000, Social science & medicine.

[33]  N. Miyaji,et al.  The power of compassion: truth-telling among American doctors in the care of dying patients. , 1993, Social science & medicine.

[34]  J. Hinton.  An Assessment of Open Communication between People with Terminal Cancer, Caring Relatives, and Others during Home Care , 1998, Journal of palliative care.

[35]  P. Maguire,et al.  Improving communication with cancer patients. , 1999, European journal of cancer.

[36]  K. McPherson,et al.  Cancer patients' information needs and information seeking behaviour: in depth interview study , 2000, BMJ : British Medical Journal.

[37]  K. Herth.  Fostering hope in terminally-ill people. , 1990, Journal of advanced nursing.

[38]  V F Hillier,et al.  Measurement of communication skills in cancer care: myth or reality? , 1999, Journal of advanced nursing.

[39]  K. Dunne,et al.  Family experiences of palliative care in the acute hospital setting. , 2000, International journal of palliative nursing.

[40]  A. Strauss,et al.  Basics of qualitative research: Grounded theory procedures and techniques. , 1992 .

[41]  G. Copp.  Patients' and nurses' constructions of death and dying in a hospice setting , 1997 .

[42]  K. M. Taylor,et al.  "Telling bad news": physicians and the disclosure of undesirable information. , 2008, Sociology of Health and Illness.

[43]  C. Todd,et al.  General practitioners' strategies and tactics of communication with the terminally ill. , 1993, Family Practice.

[44]  K. Schou.  Awareness Contexts and the Construction of Dying in the Cancer Treatment Setting: ‘Micro’ and ‘Macro’ Levels in Narrative Analysis , 1992 .

[45]  C Seale,et al.  Communication and awareness about death: a study of a random sample of dying people. , 1991, Social science & medicine.

[46]  J. Peteet,et al.  Presenting a diagnosis of cancer: patients' views. , 1991, The Journal of family practice.

[47]  M. Parle,et al.  The development of a training model to improve health professionals' skills, self-efficacy and outcome expectancies when communicating with cancer patients. , 1997, Social science & medicine.