Patients generally expect honesty, yet there often is a lack of honesty when it comes to discussions on prognosis, treatment options, and palliative care services.
Some doctors use the excuse that patients really prefer optimism. However optimism is not the opposite of honesty.
It is true that some patients do not want a lot of discussion about their prognosis. Respect their wishes and refrain from guessing, but you still need to be honest if you are presenting a patient with treatment options. In no other area of medicine do patients get offered treatment without having all the risks and all the possible outcomes explained. For example if only 10% of similar patients live beyond 6 months, do what you can to give the patient their best chance of being part of the 10%. This is honest optimism. Hope and optimism do help patients to cope with pain and the day to day challenges of cancer.
Don’t kill your patient’s hope by just dumping them on early palliative care. I have seen the unnecessary stress this caused a family member when referred to unwanted unneeded palliative care three months prior to the diagnosis that the cancer had returned. Many patients think there is nothing worse than a doctor who gives up and abandons them. Don’t tell your patients that palliative care are experts in pain management if you know the local service is under resourced and can’t possibly provide good care. Palliative Care is not a magic wand that takes away pain and stress. It is often very limited. People can die at home neglected and in pain.
Wanting one’s doctor to do everything practical to prolong life is not delusional. I am not referring to over treatment but to an expectation that good medical care will be provided right to the end. Some patients are well aware of the seriousness of their diagnosis and get their personal affairs in order but they don’t wish to give up, they want to fight to the end. This should be respected. Unfortunately they are often told to just go home and die as quickly, quietly and as cheaply as possible.
Optimism and practical honesty should work together to improve the experience of the patient. Unwanted early palliative care can make the patient feel like they are being thrown on the scrap heap before they are dead.
There are other patients who suffer ill effects from treatments given without any real explanation of possible outcomes and side effects. They are not told that it is their choice. They are not told that it is OK to want all possible treatment that they can have, and that it is also OK to say no to further treatment.
Some patients have treatment to help with symptoms without realising that it may cause worse suffering and even lead to an earlier death in some cases. Much more effort and honesty needs to go into communication.
Both honesty and optimism are essential for good care.
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