COLLUSION IN PALLIATIVE CARE
Collusion is most often seen between patients and relatives but also between professionals. Collusion is generally an act of love or a need to protect another from pain. Colluders will often argue that they know the patient better than the health professionals do and know “what he can take”. They may further argue that telling the truth may take away hopes.7
Disadvantages of collusion
Data indicated that awareness of diagnosis did not have a negative influence on emotion or global health status / quality of life. Withholding the truth and presenting a false reality could lead to a lack of cooperation with the doctor, prohibits the patient and carers from sorting out practical issues, denies them opportunities to reorganize and adapt their lives towards the attainment of more achievable goals, realistic hopes and aspirations.1At this stage when the patient is in great need of psychosocial support, false reassurances given by the doctor and family members enforce a silence around the subject of diagnosis. Collusion may also result in a heightened state of guilt, fear, anxiety, confusion, depression and conflicts for both the patient and carers for it is not easy to try to keep a secret from someone living close together.8 The above case report is an example of
the great cost of collusion imposed on Miss A who was not aware that this was the cause of her anxiety depression.
Disadvantages of collusion were explained to both Miss A and her aunt. Miss A’s aunt decided to reveal the truth to the whole family in spite of protest from Miss A. The patient was quite depressed the first few days. Given time and support from the family, he came to terms with the fact that he was dying. He discussed his plans with the family with regard to his will and other legal matters and his funeral arrangement. He prepared the family emotionally for his final departure. He had a good peaceful death in the end.
Steps in dealing with collusion9
It is essential to assess presence of collusion at the first consultation and try to discourage it. This is not to imply that health professionals must tell everything to everyone but rather assess how to give what the individual patient needs and what he or she can take.10
It is vital to acknowledge from the outset that this distressing dilemma is almost always avoidable if patients are always consulted first about the diagnosis.
Interview the relatives to gain their trust.
- Acknowledge the presence of collusion.
- Acknowledge the difficulty of the situation for the relative and that he or she is closest to the patient.
- Assess the relative’s understanding of the disease and its impact on the family.
- Review the reasons for not telling the patient; acknowledge some of these are good and come from the best of motives.
- Consider the consequences and potential harms of not telling.
- Focus on the personal cost to the relative of maintaining a deception.
- Ask what the relative thinks is the patient’s level of understanding.
- Suggest that research evidence indicates that most patients would like to know the truth and that they are already aware that something serious is happening.
Seek permission to speak to the patient alone
Indicate that you have no intention of revealing the truth to the patient but only to assess how much he knows and how much he wants to know unless he asks a direct question when it will be inappropriate to lie to him.
Establish the patient’s level of awarenessSeek permission to convey his awareness to his relative. Occasionally the relative is right and the patient gives clear signal he does not want to know. In this case it would be infringement of their autonomy to force unwanted information upon them.
Open discussion with patient and family
Finally see the patient and the family together to share information, to offer support and follow up and to start setting realistic goals for the future.
There is no convincing evidence supporting the contention that terminally ill patients who have not been told of their situation die happily in blissful ignorance. A dying person witnesses their deteriorating body, fatigue and reduction in ability to function. The hollow cheerfulness and feigned optimism about unrealistic future goals, the anxious and stressed expressions on faces of people trying to maintain a lie are excruciating to witness.
- Fallowfield LJ, Jenkins VA, Beveridge HA. Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med. 2002;16:297-303 [PubMed]
- Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: results from a large study in UK cancer centers. Br J Cancer. 2001;84:84-51 [PubMed]
- Fielding RG, Hung J. Preferences for information and involvement in decisions during cancer care among a Hong Kong Chinese population. Psycho-Oncology. 1996;5:321-29 [Link]
- Berger JT. Culture and ethnicity in clinical care. Arch Intern Med. 1998;158;2085-2090 [PubMed]
- Uchitomi Y, Yamawaki S. Truth telling practice in cancer care in Japan. Ann NY Acad Sci. 1997;809:290-99 [PubMed]
- Annas G. Informed consent, cancer and truth in prognosis. N Engl J Med. 1994;330:223-5 [PubMed]
- Sykes J, Johnson R, Hanks GW. ABC of Palliative Care. Communication with patients, families and professionals. Edited by Fallon M and O’Neill B. BMJ books, 1998.
- Khoo SB. Facts and fallacies in palliative care. Asia Pacific Family Medicine. 2003;2:143-7 [PDF]
- Faull C, Barton R. Managing complications of cancer, chapter 12. In: Faull C, Carter Y, Woof R. Handbook of Palliative Care. Blackwell Science, 1998
- Iconomou G, Viha A, Koutras A, et al. Information needs and awareness of diagnosis in patients with cancer receiving chemotherapy: a report from Greece. Palliat Med. 2002;16:315-21 [PubMed]
Palliative care and cultural competency: useful websites
Lickiss JN. Approaching death in multicultural Australia. Med J Aust. 2003; 179 (6 Suppl): S14-S16 [HTML] (Full text of this 16-part series is free, follow the previous link)
Searight HR, Gafford J. Cultural diversity at the end of life: issues and guidelines for family physicians. Am Fam Physician. 2005;71(3):515-22 [HTML]
al-Shahri MZ, al-Khenaizan A. Palliative care for Muslim patients. J Support Oncol. 2005;3(6):432-6 [PDF]Editor’s note: With our multicultural background, surely you have differing views and perspectives on “death and dying”. Do share them with our readers!
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