Out Of Time

It is Friday night as I write this. For most of the last few workdays, I have been preparing for my clinic scheduled for Tuesday September 6. I typically do this work on Monday prior to my full day Tuesday clinic. This week, Monday is a statutory holiday so I will be off enjoying the last bits of summer with my family instead of being glued to my chair in my office at work.

It usually takes me an entire day to get ready for my Tuesday clinic. There is much to do. I refresh my memory about where all my patients are at in their treatment trajectory. I make sure I have not missed a hospitalization or some other medical issue that has arisen between the last time I have seen each patient and our scheduled appointment time. I ensure I have reviewed imaging tests and blood work if they are any available. If there is progression (cancer growth) on anyone’s scans, I try to come up with a plan for what might come next for that patient. There is often paperwork that needs to be signed off or filled out.

When I first started in this job, I could just wing it. I did not have to prepare ahead of time because there was enough time in clinic to do everything I needed to do in the moment. With the advent and evolution of the electronic health record over the last ten years however, time seems to disappear in clinic. I spend a lot of time sitting at a computer making sure all the relevant boxes are “clicked”: for chemotherapy ordering and appointment booking and laboratory requisition making and pretty much anything else I need to fill out in order for a patient to flow through clinic at a reasonable pace. Because of this, I must spend a lot of time ahead of clinic preparing, always preparing. There is always so much clicking to do.

I have an extra-large clinic this coming week because I will be away the following week.  Whenever I am away, the clinic the week before and the week after the missed week becomes a little bit of a disaster. There is not a lot of wiggle room for patients to see alternative care providers when I am away, so they tend to just get overbooked into clinics that exist.

Anyway, all that was to say there was a lot of preparation required for my upcoming clinic because I have so many people to see or talk to before I go away. This time, my preparation required numerous phone calls to patients.

We have come to call these phone calls “virtual visits”. Virtual visits came about during the early days of COVID when we were trying to limit the number of people in and out of our cancer hospital. We quickly found out that many patients prefer this type of appointment – it is a time saver and a money saver for the patient as they do not have to travel into the cancer centre and do not have to pay for parking.

It is important to say that from the physician point of view, virtual visits take almost as much time to complete as an in-person appointment. There is very little time saved. As the doctor in charge, I still have to call the patient, have a relevant conversation, click all the boxed in our computer system that need to be clicked, and dictate a note. My in-person appointments are schedule at twenty-minute intervals. My virtual appointments are scheduled at ten-minute intervals. Why? Who knows?

Not only that, these appointments are stacked at the end of the clinic day starting at 6:30pm. It’s not uncommon to have three or four or more of these. However, there is no clinic happening at 6:30pm. Nope. I am expected to fit these people in during the rest of my clinic and be finished on time. The logic of this type of scheduling baffles me but I digress . . . .

I try to be very selective in who I approve for virtual visits. I do not like giving bad news over the phone unless I absolutely have to because I find doing so in person where I can see how a patient is reacting is more comfortable for the patient, their loved ones, and myself. This week there was no way for me to see everyone I needed to see during my allotted clinic time on Tuesday, nor during the subsequently scheduled virtual visits, so I ended up calling a lot of patients to have important conversations. I didn’t like having to do this. I had no choice.

I wanted to share some of the words I used in phone conversations with my patients in this blog post. In part, I hope sharing excerpts from these full-length worthy stories will be therapeutic; they have really weighed on me. I probably will write in more detail about at least a few of these in the next several months. Also, in part, I hope sharing them is as an act of solidarity with all of my colleagues who have to do the same thing to just get by each day when there doesn’t seem to be enough time to get it all done in person, the way we normally hope it could get done.

• To a fifty-year-old man with stage four esophageal cancer: “I’m sorry to have to tell you your cancer is back. Your PET shows you have enlarged lymph nodes at the back of your body and throughout your chest. The chemotherapy and radiation and surgery you just had six months ago did not do the job we had hoped; it didn’t kill all of the cancer cells. Some cells were left behind and it took a few months for us to see them growing. It is also possible that your lungs are showing signs of lymphangitic carcinomatosis which means cancer cells might be infiltrating the lymph node connective channels in your lungs. Yes, that is probably the reason you get short of breath with very little exertion. We have chemotherapy we can try. It might be able to control your cancer for a little while, but we are not talking about a cure anymore. We can’t get rid of this cancer now. On average, with our best treatments you might have about a year. If we don’t treat you with chemotherapy, we are talking about maybe three to six months. I am so sorry.”

• To a sixty-one-year-old woman with metastatic colon cancer: “I understand you were just admitted to hospital with a bowel obstruction. This is happening because your colon cancer is growing inside your belly cavity within the peritoneum and on the outside parts of your bowel. It is pushing on things it shouldn’t be pushing on and it’s causing your bowel to block off. This is why you are having so much nausea and vomiting. This is also why you can’t eat much of anything without having a lot of pain. The venting gastric tube was put in your stomach so that you could have a way to relieve some pressure. That tube is like a straw that goes between the inside of your stomach and the outside of your body. It basically just helps with pressure. I understand you have lost a lot of weight over the last few week. That is because you can’t eat anything without throwing it back up. No, there is not a way to fix this. You will die from this. No, I can’t give you chemotherapy to fix this. If I gave you chemotherapy, I would almost certainly make things worse and maybe even shorten your life. It is more important now to make sure your pain is controlled and that you enjoy every moment you can with the people you love. I don’t have a crystal ball that will tell us how long you might have to live but I think, from experience, you probably have a few weeks to a month or two. I’m sorry I can’t be more specific than that. I just don’t know.”

• To the wife of an eighty-one-year-old man with metastatic pancreas cancer: “I know it seems like things have happened so quickly for him but he did so well. People with pancreatic cancer so rarely live almost three years. He has been a trooper. He is so tough. No, we didn’t miss anything with all of his recent weight loss. His cancer is doing this. Unfortunately, this is sometimes the way pancreas cancer goes at the end. Some people do well for a while and then their cancer seems to take over and grow like an out of control wild fire. His first chemo worked for over two years. The second-line stuff we tried just didn’t work. It wasn’t the wrong choice. His cancer just didn’t respond. I understand he is suffering right now. Yes, I agree that further chemotherapy is futile. There is nothing more that we or he could have done. No, I don’t think we need to do that CT that is scheduled for the middle of September. It is just going to show us what we already know – that his cancer is growing. I agree that if he can’t cope at home or you can’t cope at home then the best option might be to consider a hospice bed. I hope he doesn’t suffer too much. Please take good care of yourself during this difficult time.”

• To a twenty-two-year-old woman dying from stomach cancer and her mother: “I am so sorry this is happening to you. Your cancer grew so fast. You are having all of this nausea and vomiting because your stomach is not doing what it is supposed to be doing. It’s supposed to be a muscular sac that holds your food and mashes it up and then sends it on its way. Your cancer is not letting it do its job. The food just gets stuck there and your stomach then gets irritated, and your body doesn’t like that. There isn’t anything we can do to fix this. The chemotherapy and immune-oncology drug you have been on are not working. There are other options for chemotherapy but you are too sick for more treatment. You are also too sick to participate in any clinical trials. No, I don’t think a surgery would be helpful. Just because we can do something, doesn’t always mean it is in your best interest to do it. A surgeon might be able to do something but at the end of the day they will not be able to take all this cancer away and we don’t have any drugs that can control what is happening. I am so sorry. You are dying. Yes, we can give you the information on medical assistance in dying (MAID). You have to contact them yourself. We cannot do that for you. There is a process that must be followed and the doctors that perform MAID have to do a proper assessment on you to make sure it is a safe procedure and that you are well informed about it. Yes, it can be arranged at home. Some people get it done in hospital. It’s up to you where you would like to die. Yes, it is your right to choose as long as you are assessed to be of sound mind. I’m sorry we couldn’t do more for you. I am so sorry.”

Three out of the four of these patients may not be alive when I get back to check on them in just over a week. They will soon be out of time. I’d like to say this is a rare occurrence – to have so many patients so close to the end of their lives. It’s not. It happens every week. So many people are affected by cancer. So much time is lost. So many things are left undone and unsaid.

Cancer is the ultimate time killer. Over and over and over again, it strikes. I wish we could do better for all these people and their loved ones. Please know, my colleagues feel the same way.

Author Notes:

We don’t know when our ride on our life rollercoaster will end. We don’t know if we will have a long or short ride. We don’t know if it will contain straight-aways or spiral turns. We don’t know if there will be any loop-de-loops and if so, how many. Some of us get re-dos, stopping in at the loading station for another turn with a different passenger beside us for a certain length of time. Others are on a continuous ride alone, with new bumps and climbs and drops along the way. But when will it end? How much time do we have to do all the things we want to do?

Most of my patients have a shorter ride than anticipated. Their track runs out much earlier than they thought. There is no choice to this. It just happens.

I have been thinking a lot about time the last few weeks. I tend to do this toward the end of August when summer is fast disappearing, and the start of another school year looms near. Where does the time go? Why does it seem to fly by so quickly?

If there is one thing my job continues to teach me, it is that time is precious. I sometimes want to bottle time, to freeze the moments that I don’t want to end: the seconds when my son smiles his beautiful smile as he’s said something clever; the minutes when my daughter asks me to stay just a while longer when I’ve tucked her into bed as she falls asleep; the walks and talks with my best friend and dog in the river valley when we talk about nothing and everything all at once; the trips of a lifetime that soak up all of our togetherness.

When will it end? I ask myself this a lot. I am grateful I don’t know the answer yet.

I am curious to know, reader, when you are out of time, what will be one or two things you choose to do before you take your last breath? I hope it’s not to write that last work email or to fold one more load of laundry.