The owner of this blog – whom we will call Lú – co-wrote this post with the person writing this pre-post note, whom will be referred to as Mực. Why those names? The short answer is: We’re not sure. What we are certain about is that we hope this post will bring a light-hearted discussion on a topic often felt with a heavy heart. You, our esteemed readers, will see Mực’s voice printed in black, and Lú’s voice in purple.

For more information about Mực, please visit her LinkedIn profile here.

As my family navigated through a cancer journey for several years, I’ve had plenty of chances to reflect on how other people and I myself behaved around a patient. Every time someone visited our house, I got to see how challenging it was for them to walk multiple thin lines during their conversations with the patient and the caregivers. I believe we’ve all been there. At some point in our lives we’ve visited a patient, at a private home or a hospital, having to decide what to bring, what to say, how long to stay, and many other questions that don’t come with a one-size-fits-all manual. In the three sections below, Lú and I will share our personal observations on the sometimes conflicting wants and needs of patients, caregivers, and visitors (Section 1: “You’ll get better soon”), the treacherous waters our language has to sail through (Section 2: “Only words bleed”), and finally, the bigger picture of uncertainty (Section 3: “Between the lines of fear and blame”).

‘You’ll get better soon’

a song title by Taylor Swift

That’s what we all want – we want the patients and, by extension, the caregivers to get or, at least, feel better (unless there’s some kind of hidden dark twist). But maybe that wish is the only thing we can say with any certainty that everybody has in common. The trickiest part, then, is to distinguish what we want from what the patients or their caregivers want or need.

Social and cultural norms contribute a great deal to our casual definitions of what feels right, seems normal, or sounds good. Deciding to pay a visit to a relative or dropping by their hospital room upon hearing bad news seems to be a no-brainer. Even if we pause to think, it all still seems very reasonable to “be there” because there could be so many benefits: we can stay updated, we can (hopefully) help out promptly with anything, we can provide emotional support, etc. But once we arrive, things get complicated because now our norm-shaped perspective should no longer be the only perspective. One example can be seen in how we interact with a patient. Sitting next to the patient, giving them a hug, or holding their hands seems like the right thing to do, perhaps because to us those interactions mean cheering them up or showing them how much we care, which are almost always perceived as favourable. We may not, however, be aware of the fact that if the patient has a weakened immune system, they will be at a higher risk of infection, and therefore should avoid close contact.

During my trips to Chợ Rẫy hospital in the recent years, I have paid close attention to their change of policy. The hospital no longer takes visitors to patients’ rooms and at the moment, only one caregiver can accompany each patient. This change of policy has made the hospital cleaner and less noisy than years ago, when the hospital was clearly full of chaos. After certain visits, the patients can obviously feel better thanks to all the love they receive. With that love, however, is sometimes the worsened symptoms of heart or lung diseases which are triggered as the patients have been talking too much to the visitors, for example. We cannot entirely blame the visitors for such problems because if they don’t come timely, they are likely to feel the guilt of breaking norm-based politeness. However, it’s worthwhile to consider the patient’s situation and ask for the caregivers’ opinions beforehand.

For some caregivers, taking visitors is like a breath of fresh air. They feel the warmth and compassion of their friends and family, who share their joys and sorrows. Taking care of patients is a daunting and exhausting task that may make some caregivers feel uneased. Having someone to talk to or to relieve all the cumulative stress during hospital trips is such a nice therapy for the mental health of the caregivers. We do, however, need to acknowledge that taking visitors also means having an additional task on the list. Visitors can be a source of comfort and support for the patients, but they can also be a source of stress and distraction for the caregivers. In some cases, caregivers have to prepare the room, greet the visitors, entertain them, and sometimes deal with their questions and emotions. This can take a toll on the caregivers’ physical and mental health, especially if they are already overwhelmed by their caregiving duties.

‘Only words bleed’

part of the lyrics in ‘Photograph’ by Ed Sheeran

Communication with patients and caregivers is challenging. As I sailed through the hospital trips with my mother last month and observed all the visitors to my grandfather’s bed before he passed away four years ago, I’ve realised how difficult and important it is to communicate properly with the patients and the caregivers. However, not all visitors reckon that. 

Yes. I do acknowledge and appreciate all the love and warmth of those who virtually and physically visit my family members when they are in their worst conditions. I strongly believe that they all mean well. Having said that, we cannot guarantee such good intentions can completely manifest themselves in our words. During certain phone conversations about my mother’s heart disease, my family received tons of advice from colleagues, relatives and acquaintances. Some of them openly talked about how their religious belief can help with the sickness. Others recommended different ways to treat the diseases or sustenance the patients should have. Some people, after having heard of my mother’s course of treatment, honestly discussed the pros and cons of cardiac catheterisation and stent insertion. 

One of my mother’s colleagues asked her (in Vietnamese), “Trời, sao phải tới mức đặt stent dữ vậy? Đó thường là biện pháp cuối cùng, không còn cách nào mới phải sử dụng chứ.” (Gosh, why do you need to resort to stent insertion? That should only be considered when all other things don’t work.) He then gave us a lot of advice to try Chinese traditional medicine instead of the treatment we had chosen. He sounded so confident and convincing that my mother felt very scared and worried after talking to him. She thought that she was seriously ill and had little chance of surviving. On the contrary, the cardiovascular doctors we had seen told us that this surgery was a minor one and the best way to prevent future heart problems.

Advice is not always helpful. The language of my mother’s colleague tends to represent her medical condition as desperate and helpless through his choice of extreme lexical items such as tới mức (to such a great extent), dữ vậy (so bad, so serious), biện pháp cuối cùng (the last option), không còn cách nào (there’s no other way). Phrases like these are not hard to find during other conversations my mother had. The way people frequently use questions such as Sao phải…? Sao mà…? (Why…?) also triggers a sense of disagreement, as if the visitors strongly oppose the course of treatment we have selected. I know they cared about my mother, but their words made us feel more confused, doubtful, and anxious. These feelings were not good for her health, especially since she had high blood pressure.

Some visitors also tried to find the causes of the disease. When my mother had a heart attack, many of her friends blamed her work environment. One said, “Em đã nói chị chuyển khỏi [her workplace] đi từ lâu mà. Ở đó áp lực quá giờ bà mới tới mức vậy.” (I have been telling you to quit your job at [her workplace]. Such work-related stress from that has led you to this extreme extent.) He thought that my mother hated her job and wanted to leave it. But he was wrong. My mother loved her work and enjoyed it most of the time. His words did not make us feel better, but worse. I also heard through the grapevine that the manager of my mother’s workplace was criticised for causing her illness. Another one wrote, “Anh cũng nhiều việc, cũng áp lực mà.” (I also do have a lot of pressure at work.) If I were the patient, I would feel offended by this comment. It made me think that I was weak and unable to cope with what others could. Many conversations like these made my mother regret her lifestyle and feel guilty about her illness. Again, she felt no better.

Another challenge was that the visitors and the caregivers had different views and attitudes about the illness and its treatment. I respect diversity, but I don’t like it when visitors disagree with us too much. This happened to my mother, my uncle and my aunt when they took care of my grandfather. They had to make some hard choices about his medicine, his food, his activities, his safety and especially his surgery. But some of the visitors did not support their decisions and said things like “Ủa sao phải phẫu thuật làm gì cho nguy hiểm, tốn kém? Sao không tìm thuốc nam, hay uống mấy loại thuốc dân gian?” (Why does he need surgery? It’s risky and expensive. Why don’t you look for herbal medicine or drink some folk remedies?) They thought they were being helpful, but we, the family, felt that they were judging and undermining our authority. Their questions sounded like a blame on the caregivers, assuming that they had not carefully considered the suitable treatment for the patients. We, as the caregivers, often felt sad, disappointed and discouraged after these visits.

‘Between the lines of fear and blame’

part of the lyrics in ‘How to save a life’ by The Fray

To sum up what we’ve discussed so far, when we visit someone who is sick, we often have good intentions. We want to show them that we care, that we are there for them, that we hope they will get better soon. But sometimes, our words and actions may not match their feelings and needs. Sometimes, we may unintentionally hurt or offend them, or make them feel worse. Sometimes, we may also clash with their caregivers, who have a different view of the situation and a different role to play. Being a visitor is a difficult task that should be handled with great care.

To put things into perspective, visitors and caregivers are not the only groups who struggle with being selective about language and deciding on communicative actions. In this opinion piece from the British Medical Journal, the author points out the challenges doctors have to face when it comes to questions such as what to say and how much do we really know. These questions touch on a broader topic: uncertainty, and that is not something we see in one or two fields. It’s what we all need to learn to live with (if you’re interested, here’s a relevant Facebook post on uncertainty that I wrote in 2020). May we all do the best we can on this learning journey.