A lie does not consist in the indirect position of words, but in the desire and intention, by false speaking, to deceive and injure your neighbour.”Jonathan swift
For those of you who follow the Sick With Optimism blog, you will note I’ve taken a little break the past couple of weeks. It has been a trying time as our family lost one of our matriarchs. It is very sad to lose a loved-one, and the process, particularly if you are not 100% well, can be exhausting. To honour this dear woman’s life I have elected to reflect on these difficult days and to share this as a learning experience about communication.
The Subtle Art of the Euphemism
To be perfectly frank, I do not like the use of the words die or dead; I often wonder when I’m reading or watching the news how the family of the deceased feels when they see or hear “One person is dead after a multi-vehicle collision,” or “The victim later died in hospital” as these words seem so harsh to me. I wonder why the news does not employ more delicate terms, such as the euphemisms used by families and friends, passed-away, for example. Saying passed-on, or passed-away, is no less true, but does not sound as clinical or ugly. I suppose the news is just that, facts that are allegedly not compromised by emotion or opinion.
I visited our loved-one in the hospital five days before she passed away. Four of us were present to speak with two doctors that evening. The first doctor we spoke to told us they were were not certain which of the patient’s conditions were causing her to “circle the drain.” The doctor used this turn of phrase twice prior to being called away for another urgent conversation. In the mean time, I mentioned to one of my companions my alarm that the doc had employed this euphemism for dying, I felt she was being very direct in telling us that our loved-one’s body was shutting down. Surprisingly, my companion hadn’t even noticed. When the same doctor returned to complete our conversation, she once again used this phrase; my companion having been alerted earlier did pick up on it this time around. Later that same night, the ICU doctor came to speak to us and in a very somber tone let us know our loved-one was (with emphasis) very ill, yet surprisingly alert for someone in such grave condition. I felt as though both doctors were attempting to prepare us for the inevitable loss we were soon to experience.
Less than a week later, I spoke with the other two family members who were at the hospital that night. To my surprise, both expressed shock at how quickly our loved-one’s health had deteriorated while in hospital. They were also angry with the doctors for what they described as offering false hope. How strange I thought to myself… how could they have been taken by surprise when the doctors had been so direct with us I wondered? I realized at that moment that likely they were not familiar with the euphemisms the doctors had employed, or being so close to the situation, were unable or unwilling to read between the lines. It seems that the doctors, while attempting to be sensitive, had not accurately conveyed the gravity of the situation to all of us that night.
Sadly, these family members remain angry with hospital staff for not being clear that the likelihood of their sustained efforts in this dear lady’s final days were not likely to be successful in the condition she presented to them. In spite of their expectations of medical interventions and best care, they are left with the feeling that this poor woman had endured undue hardship by procedures to keep her alive those last few days.
An old friend of mine is a registered nurse. Years ago she told me a story that may shed some light on this issue. She was caring for a patient who was clearly at the end of life. She knew from what the family were saying that the doctors had not conveyed this information directly to them and as a young, idealistic caregiver, the nurse felt it was important that the patient and family know and prepare for this inevitable outcome. When the doctors learned what she had done she was subject to discipline as it was not her job to tell the family and she was told she did not have the right to take away their hope.
In another experience, one of my children, at that time aged 18, was in hospital with a serious illness. I would ask the nurse questions but she could not provide me with all of my answers. Nurses were at liberty, but only with my daughter’s permission, to share test results but were not permitted to share diagnoses or prognosis with me.
In our recent experience, family members complained that some nurses were not answering their questions, referring them instead to speak to the doctors – I tried to explain that the nurses may not be permitted to give out some of the information they were asking for, as frustrating as it may seem, there are rules in place for the patient’s protection. It is a good idea when being admitted to have the patient let the hospital know who they are willing to have their personal information shared with. If the individual is incapacitated, it would be good for caregivers to provide documents such as power of attorney for personal care or “living will” to verify that you are the person who is meant to represent the patient at such times.
I can see how doctors and other healthcare professionals are in a difficult position. They want to convey accurate information without being so blunt as to upset the patient, family and friends, leaving them in something of a quandary. They also need to protect themselves from leading the patient and family into false hope or despair. I believe that this is the reason our doctors in this case were employing euphemisms, in an effort to be delicate and convey that they could not be 100% sure about this patient’s chances of living or dying. How many times have you heard stories of people pulling-through after doctors had given a fatal prognosis? Often times the doctors in such situations are vilified for not providing hope to loved-ones.
The way I see it, in general, healthcare professionals have dedicated their careers to healing and easing pain. They would have no reason to unduly inflict pain and suffering on their patients or their families. What would be the advantage for them to lie or mislead the patient and their family? As the quote above from Swift points out, its not a lie if there is no intent to deceive. Certainly, some doctors are better than others in terms of their medical talents and communication skills, but in the end, I have to believe that the vast majority do their best. In our case, the doctors may be very surprised that the family was not prepared for our loss under the circumstances. In their attempts to be kind and delicate rather than blunt and direct, the docs may have employed euphemisms or inferences which were not clearly understood leading to this sad situation of miscommunication.
Getting to the Heart of the Matter – Asking Questions
As much of an optimist as I like to be, I do place a high value on having realistic expectations; if you or your loved-one is in the hospital I believe you should have a realistic sense of their prognosis. Some people seem to instinctively expect the worst, while others tend to hear only the positive. If one is in the hospital for treatment of a condition and then other systems, such as respiratory or kidneys begin to fail, doctors may indicate that they will give such and such medication or therapy to help mitigate these complications. In our case, the family believed that it should have been made very clear to them that these interventions were not likely to ultimately save the life of the patient. The other side of the coin is, however, did they ask?
Prior to my diagnosis with scleroderma, I went to a walk-in clinic over the holidays with a strangely swollen arm and hand. I was sent for tests which were inconclusive. When my regular doctor was back in her office I went to see her, she took bloodwork, sent me for imaging and other tests and to see various specialists. Each time we ruled something out I would ask the question, “So why is my arm still swollen?” and I would be off again for more tests and to see other doctors. I have heard statistics that it can take two to four years to receive a scleroderma diagnosis (for some decades!), mine was about four months. Why? In part, because I kept persisting with questions and my GP was fully invested to continue following-up.
Ultimately, when someone is very ill it is important to know what the likelihood is that the treatment will work, what the possible side-effects are and what the overall prognosis is. This will help patients and caregivers to make better-informed decisions about treatments and, if necessary, get whatever affairs they can in order. I know several teachers, and they like to tell me that you should never be surprised by your child’s report card. If a child is under-performing it is up to the teacher to ensure that parents are brought up to speed along the way so they should have a fairly strong indication of where the student stands prior to receiving their report card. Likewise for the sick or elderly, they and their caregivers should have as much information as possible to understand what the next phase of life will look like, or if indeed there is very little hope for survival.
First, ask yourself some questions: “What is my/their diagnosis and prognosis? Are there any risks or side-effects to this medication/treatment?” and “Is this treatment necessary or are there alternatives? What is the end game?” If you are at all uncertain about the answers, then you need to ask the healthcare team direct questions like these. If you are still not clear, let them know you are not understanding – whether it be an issue of terminology or a language barrier, keep on asking questions until you have a complete picture of your/your loved-one’s health and what to expect (or at least the odds of what to expect) next. If you are not up to the task, see if you can have a family member advocate for you.
I maintain that it is still important to be optimistic, but with realism. Your healthcare team is an easy blame when things do not go as you had hoped for you or a loved-one. Unless you would honestly prefer not to know, forewarned is forearmed. But if we are not clear, I feel it is up to us as patients and caregivers to ensure we have no allusions about treatments and prognosis. In order for this to happen, we must set aside assumptions and any sense of intimidation and take responsibility; ask ourselves and our healthcare team the tough and sometimes repetitive questions necessary to achieve this understanding.