Should patients be told that they are terminally ill?
The British Medical Journal (BMJ) recently gave space to a controversial discussion on the question of whether (and how) patients should be told that they are terminally ill ("terminal"). We describe the two points of view as a stimulus for considerations that should not be alien to primary care physicians either.
Cons: Patients don't need to be told they are terminally ill.
We should not withhold information from those who ask for it. But insisting on prognostic communication to "facilitate the patient's decision" at the end of life is a failed model of medical decision making that causes more suffering than it saves.
What does terminal mean?
The notion of "terminal" or "incurable" disease is not clearly defined. Even palliative care physicians do not have a universally accepted definition of it. What does it mean to tell someone they are terminally ill? That he will eventually die (which is true for all of us)? That there is "nothing more we can do" (which is never true)? When is a person terminally ill? If they develop a terminal cancer, even if they have many years to live? When bodily functions cease-. The symptoms increase? Or not until someone is bedridden and unconscious?
Do patients need the prognostic information of being terminally ill to make decisions about their continuing care or. Therapy? There is an underlying amption here of having to choose between life-prolonging therapy and one aimed at palliation. This amption is largely the product of media. Legal attention for rare cases like coma patients. Most adults die from chronic life-limiting diseases such as cancer, end-stage heart and lung disease, and complications of dementia. Here, there is no need to choose between life extension and palliation: Dementia patients do not die faster without artificial nutrition, patients with advanced cancer do not die sooner if they choose hospice or palliative care – they may even live longer if they do, even though life-sustaining technology is used less often.
The real question
The real question is: How can we provide the best care to patients with terminal, progressive diseases? These patients do not need to know that they are terminally ill, but what we can and cannot do for them and what the likely course of their disease is.
Linking end-of-life care to a patient decision can lead to a tricky situation. We insist on telling patients that they are terminally ill and expect them to decide against continuing treatment that their doctors think will do more harm than good. Patients, on the other hand, believe they are being asked to accept their dying and choose death over treatment. Unsurprisingly, they refuse both the label "terminally ill" and to decide. This does not improve their prognosis, but it does create moral conflict for physicians and anxiety and trauma for patients and their families.
To decide about their care, terminally ill patients do not need to know how long they will live or consciously accept death. Instead, they need to understand what the limits of disease-controlling therapy are in their condition, what medical care can do, what side effects treatments can have, and what will happen if the disease progresses.
Source: Leslie Blackhall, division director, palliative care, Virginia School of Medicine, Charlottesville, Virginia, USA, BMJ 2013; 346: f2560
Pro: Patients have the right to make informed decisions.
Informed consent and the process of weighing the risks and benefits of treatment are fundamental ethical principles. This also applies to terminally ill patients, for whom knowledge of the incurable and life-limiting nature of their condition is indispensable to decision making.
Knowledge gives strength
Decisions about terminal illness include advance planning for care, finances, powers of disposal, powers of attorney, and wishes about where to die. But such decisions are not always made in a well-informed manner. A recent study showed that 69% of 710 U.S. patients with incurable lung cancer and 81% of 483 patients with colon cancer who received palliative chemotherapy did not realize that it was unlikely to cure their cancer. On the other hand, cancer patients could be more likely to die at home if they were allowed to express a preference for where they would die and were clear about how they would die. Accurate information allows patients to make informed, realistic decisions and helps them get the care they want.
It is hard to convey that more harm can be done by communicating honestly and empathetically with a patient about his or her condition than by refusing to communicate, which deprives the patient of autonomy. In England, the medical regulator General Medical Council (GMC) requires that information be withheld from terminally ill patients only if it is likely to cause serious harm, which is defined as "being more than dismayed or frightened".
Therefore, the main consideration for physicians is not whether patients learn that their disease is terminal, but how they learn it. They should be given the information they need and want in a way that is understandable and continuous, so that they can gradually come to terms with the situation. Terminally ill patients may also ask more specifically about their prognosis. A terminal illness can be described as "incurable and life-limiting". From the perspective of the law, it is defined in the UK as "a progressive disease that can reasonably be expected to result in death within six months."
Because prognoses can never be accurate, they should be discussed with patients only when they ask for them, acknowledging the inaccuracy of an estimate. It can be helpful to use a framework and z. B. Describing prognosis as a matter of months, weeks, or days. However, the vagueness should not obscure the fact that the disease is incurable.
Sometimes relatives ask that medical information be withheld from the patient or instead shared with them themselves, fearing the patient will not cope and lose hope. The GMC clearly states that no one should make decisions on behalf of a patient who is able and willing to do so themselves. It may help to educate relatives about this clear requirement, but also reare them that if patients do not want information, it will be respected.
Loss of hope is often used as an argument against fully informing terminally ill patients. However, hope and terminal illness are not mutually exclusive. On the contrary, glossing over the diagnosis of terminal disease with unrealistic or false hope can raise false expectations. A physician who sensitively informs his patient that his disease is incurable and life-limiting does not prevent the patient and his family from hoping: to still experience something specific, to die peacefully or that there might be a cure beyond our scientific understanding.
The challenge for the physician, then, is to speak honestly with terminally ill patients in a way that leaves room for hope.
Breaking bad news is always a challenge. But not doing so may compromise trust with the physician, the patient's autonomy, and ultimately the patient's quality of life.