As a healthcare professional, one of the essential things that we trained for was how to break bad news. Nothing, however, prepared me for how to receive bad news as a patient or caregiver. And I have been both. The latest drama in my life is to be a primary caregiver to my mom who is suffering from Stage 4 nasopharyngeal carcinoma, metastatic to liver.
There are days when I ask myself which was worse – receiving bad news about the cancer diagnosis or finding out, close to a year later, that there is a relapse that has metastasised. To be on the other side of the consultation table brings new-found respect for the patients and their next of kin, and leads me to understand why they go "crazy" at times. This brings me to the five things that I wish doctors could provide patients or caregivers with:
1. Honesty
When the conversation is about matters of life and death, nothing is more important than honesty. If the outlook is not good, tell us. If the treatment is going to be tough, tell us. This is where your training of soft skills comes in. Being honest is not equal to being harsh. You can be honest in an affirmative and empathetic way. These conversations help us to deal with rough times as a family unit and commence healing in the form of grieving. Always remember, grieving is not only about death and dying. Grief sets in even at the onset of diagnosis.
2. Confidence
When we walk into the consultation room, we expect some level of confidence from you as a doctor. You are the expert and you need to be certain about what you are doing (regardless of your title). If you present yourself as being unsure or as though you have not given any further thought to our treatment plan, it does not help to alleviate all that anxiety that was building up while waiting for our appointment. However, if you are not confident not because you do not know your stuff but because the case is a mystery, then just be honest about it (see point 1).
3. Tolerance
During our moments of desperation, when science cannot answer our questions and disease progression is not visible, your patients will turn to the Internet and myths. Some queries might include, "My friend said this green herb helped to cure her sister's friend's auntie's cousin's cancer. Can I take it?" or "Doctor, is it because I did not cut out rice from my diet for the past year? I read that the sugar from rice will feed the cancer cells." Please don't judge. We are just trying to find other ways to make sense of the situation. Besides, it is easier to blame rice than genetics.
4. Consistency
Seeing different doctors scares us. Because with every change of doctor, the treatment plans may also change in a matter of one or two days. When I was hospitalised during pregnancy, I was initially told to be on complete rest in bed and that I required a period of stay. I was not even allowed to walk to the toilet which was 20 metres away and I had to use a bedpan. The next day, another team came to tell me that I could be discharged. How did the treatment plan change so drastically when there was no change to my condition? Please be consistent in the treatment plan (unless you found a new miracle pill!). Documentation exists for a reason (other than legal responsibilities). Do take that extra two minutes to read the documentation and recording done by your colleagues.
5. (That extra pinch of) patience
As a healthcare worker, it takes a lot of courage to not intervene in the care of our own family members. We are frequently torn between wanting to respect your professionalism and wanting the best for our loved ones. Yet we are so acutely aware of how much we dislike aggressive patients/next of kin and the need to remain polite amid any frustrations we could possibly have. Just because we are fellow healthcare workers does not mean that I know exactly what to expect. Because I might not be in a clear state of mind, I need someone to plainly explain what certain things mean. Besides, as much as I am trained in a certain healthcare- related field, it does not mean that I went through medical school or have any experience in your area of expertise. I hope that you will have that extra pinch of patience to explain what you think I may already know and clarify whatever doubts I may have.
Amid this tough and seemingly long journey since the onset of my mom's diagnosis, we have been blessed to meet excellent doctors who have gone the extra mile for her. At the same time, we have had our share of frustration, from not having any answers to experiencing inconsistency in care management. Every bit counts. You may not know this, but your actions and speech affect us and our response for the rest of our day/weeks. We analyse your non-verbal cues and your sentence structures. What do you mean when you start a statement with "I think..."? How honest are you being? Is it time for us to dump our responsibilities and take that world tour in anticipation of the worst? It is that power you hold as a doctor. We may be just one patient out of your long patient list to clear for the day, but please know that every visit we have with you can either make or break our day.
Lastly, thank you for all that you do because what you do matters.
SMA News is always on the lookout for content that may be of interest to our readers. If you have an interesting anecdote or unique patient encounter to share, drop us an email at news@sma.org.sg.