I was recently facilitating a study day entitled, "Communicating effectively in advanced illness". Some staff from a care home that cares for patients with mental health problems, (and also advanced illness), told me that they withold the truth from some patients because the truth would distress them.
I would be grateful for your thoughts
I look forward to hearing from you
Richard, I always think this is a fascinating subject. I recall speaking to a group of student nurses a few years ago and I put that very question to them. Their answer was categorically no, it was never acceptable to lie. Absolutely black and white. I remember one of the students said that the patient should always be told as we have Macmillan nurses to help patients deal with the news. I have never been quite as certain that it is so clear cut. There are so many questions. What is telling lies? Are some acceptable and others not? Is telling lies different to withholding information that the patient has not actively asked for? How many times have I heard 'Well they haven't asked so they obviously don't want to know'. Another important question is who is protecting who? Is the relative who asks for their loved one not to be told a diagnosis protecting their loved one, or are they protecting themselves from having to deal with the distress. Is the doctor who goes along with that really acting in the patients best interests, or are they making life easier for themselves by not having to break the bad news. Are the staff in the nursing home protecting the dying patient, or are they simply acknowledging that they do not have the skills necessary to cope with that type of situation. It is an interesting topic.
It is indeed an interesting question and one that is not black and white.
Sometimes the families know what is best for the patient, however that being said, I make it quite clear to them that if the patient asks, it is my duty to tell them. It is THEIR life and diagnosis we are speaking of. They will already know something is up both in what the Doctor says and by the way the family ignores the questions. Ultimately, the patient always knows. if the patient has dementia and is unaware of what is transpiring, then the family can make the call.
It is important also to note that for cases where the family does not wish the patient told, who is making the informed decisions? What is the patient to think if treatment is decided on?
Bottom line the patient always has a right to know!
do they hold information from the patient or the patients relatives. i thimk it all depends on levels of understanding and comprehending what that information means to them.truth telling is the best policy as there is too many taboos in the medical profession that are not discussed. withholding information can only cause problems for staff and the patient.
What a curly one!
patients with dementia will often forget or regress. What do you do if an elderly patient says "where is my mother"? I have seen such a patient faint from shock when a nurse who believed in telling the truth no matter what, replied "you are very old now. your mother has been dead for years".
I have also seen occasions when cultural taboos have prevented patients from being told that they have cancer. Referring to "the growth" or "the tumor" was acceptable, the word cancer was not.
however, telling lies is not acceptable either. Often it is how the answer is framed that is important.
by the way, what are "Macmillan" nurses?
The other issue that throws a spanner in the works is that of culture. If it is accepted that the family makes the dicesions for the patient, then you could get around by asking the patient (when family is not around) if they are happy with the family making the decisions, or do they, indeed, wish to know.
If the patient is competent it is not acceptable either to lie, to tailor information according to your assumptions about the patient's coping capabilities (you cannot know what is in a person's mind), or to withhold information (lying by default). The qualitative evidence for this is to be found in 'Nothing Personal, disturbing undercurrents in cancer care', along with research references.
Too often health professionals do not communicate information which may disturb patients, because it will mean they have to deal with the patient's distress. Tailoring healthcare to a healthcare professional's comfort zone is not good practice and certainly not patient-centred. It is not worthy of 21C healthcare.
I met someone recently, a carer, who was adamant that her husband should not have been told he was terminally ill 'because he went downhill immediately - he lost hope'. But he had been told abruptly, with a throwaway remark in a completely inappropriate manner. She was adamant she knew what was best for her husband. But he could have been trying to give her (false) hope - each protecting the other, when they would really have liked to support each other about the issues brought by a terminal diagnosis. They needed to be enabled to talk about this, come to terms with it and move forwards into acceptance.
Uncertainty is worse than the worst news. It leaves a person in limbo. False hope can be more destructive for patients than telling the truth. It can damage the doctor/patient relationship and destroy trust. It can also leave people feeling cheated, prevent them having a full appreciation of circumstances and abilities (however short term), stop families coming to terms with the prognosis, saying the things to each other they would want to say in that situation, stating preferences for future care and arrangements after death. It is patronising. It assumes a position of power and control not given or offered by the patient. It is cowardly, it is paternalistic, it is deceit - and it has no place in modern healthcare. Communicating significant news well all depends on the manner of communication. Those who communicate such news need training. If you cannot access training, an excellent book is 'Skills for communicating with patients. Oxford: Radcliffe Medical Press; 1998 (and companion) - cannot praise it enough. Communicating significant news well shows respect for the patient, is the opposite of all mentioned above, allows them to deal with their situation in whatever way suits them best.
Use of decision aids puts control into patients hands(O'Connor AM).
See also Fallowfield LJ, Jenkins VA, Beveridge HA. 'Truth may hurt but deceit huts more: communication in palliative care'. Pall Med. 2002; 16:297-303.
For insight into better/evidence based practice, please see 'Nothing Personal, disturbing undercurrents in cancer care', Radcliffe Publishing 2008 - a patient narrative with discussion sections after each event, backed by 114 references.
Edited: Oct 22, 2011 @ 10.39pm