On being a patient and becoming dependent
January 30, 2024
When I became a cancer patient, it transformed me. I had been someone who identified himself as an agent in the world, someone who acts or exerts power, a force that, I hoped, made good things happen. Patients are acted upon. Becoming a patient means losing some of my agency and becoming dependent, a care recipient instead of a caregiver. Many of us have defined our lives around our work or our families. If so, what is your life worth when your ability to work diminishes? What is it worth when your family needs to care for you instead of you caring for them?
I have had to think about this a lot because I’ve developed a new and severe health problem in the last month. More precisely, an old health problem has come back. The problem is atrial fibrillation (AF).
In AF, my heart’s upper chambers beat erratically and out of sync with the lower chambers. The heart pumps blood less efficiently and then speeds up to compensate. The rapid, irregular heart rate doesn’t help much. The brain doesn’t get enough blood and, therefore, doesn’t get enough oxygen. AF puts me in a quasi-vegetative, disabling state when it is happening. Worse, I risk fainting—and falling—if I try to stand up.
I’ve had AF, on and off, for my whole life. The underlying cause is that I have a congenital arrhythmia. An arrhythmia means that the wavelength between heartbeats varies randomly. I was also born with a slow heart rate and low blood pressure, and decades of marathon and triathlon training lowered my heart rate and blood pressure further. This means that sometimes my arrhythmia will throw a random super-long pause between one heartbeat and the next. That long pause freaks out the neural circuitry that governs my heart: it starts beating rapidly to catch up. AF is my heart having a panic attack.
To deal with AF, cardiologists placed a pacemaker in my chest. They also performed a procedure called an ablation, where they snaked a thin cable through my veins into the misbehaving ventricle of my heart. The misbehaving nerves that trigger AF lie on the inner surface of the ventricle. The business end of the cable had a video camera and a heating element, like a soldering gun. The cardiologist used the hot tip to burn away the defective nerves.1
The pacemaker and the ablation gave me decades of health. However, AF is back. I had a chemotherapy cycle on January 10th, and it was followed by several days of AF. We don’t know why, but here’s my theory. Chemotherapy works by poisoning the tumour cells with platinum. But it also poisons me, and my body tries to pee it out as quickly as possible. So, I get dehydrated following a chemotherapy cycle. Dehydration lowers my blood pressure, and low pressure can also trigger AF. So, here’s yet another rule to stay healthy. I carry a water bottle everywhere, and I drink every time I urinate. It may be helping; my AF has diminished.
What does AF feel like? Oxygen starvation means that I can’t write and can barely think. I’m losing one of my—possibly few?—remaining days. I’m a caribou pursued by wolves. They’re herding me into a smaller and smaller space, cutting off each avenue of escape. The disability and behavioural constraints of illness mean that I can do less and less. As I lose agency, I increasingly become a patient who consumes care but does not provide it. I’m a net drain on the world.
I’m not alone in devaluing a life of dependence. I have read several narratives of patients who have died by physician-assisted suicide, some while still relatively healthy, at least compared to me. They often say that they want to end their lives now because a life of dependence isn’t worth living.
Why would someone believe their life isn’t worth living? Many secular people believe that what matters most about our lives is what we do, and what makes what we do good or bad are the consequences of our actions. Becoming a patient limits the good you can do. Some people fear that dependence will reduce their autonomy: they fear being confined to a bed in a skilled nursing facility. Our culture prizes self-determination, and many believe that human dignity is proportional to self-determination. If you are an altruist, your opportunities to benefit others may be curtailed if you are dependent or disabled. A person who is dependent and faces suffering that cannot be relieved may judge their life to be without value.
From a Christian point of view, there are several problems with these views. First, believing that only consequences matter implies that at any moment in time, only the future matters. We can’t alter the past, so it’s irrelevant. The present matters only for the infinitesimal moment that it lasts. The past doesn’t matter at all. Christianity takes the view of eternity. God is outside historical time and knows the past and the future. Everything is always visible to God. Your job is to do what is right in the right spirit with the time allocated to you. Whether we can benefit ourselves and others matters, but it is not the only thing that matters.
Jesus also taught that our interior lives have a moral dimension independent of the consequences of our actions. My interior life is part of the universe; I can make the universe better by improving my interior life. What’s a good interior life? You should be of goodwill, act in good faith, and wholeheartedly seek to do what’s right. We should be motivated by love: God loves us and wants us to love God and our neighbours.
Moreover, the value of a good act or good intention is not proportional to the magnitude of the consequences. This is the lesson of the parable of the widow’s coins (Luke 21:1-4). Jesus and his disciples are at the Temple in Jerusalem.
[Jesus] looked up and saw rich people putting their gifts into the [Temple’s] treasury; he also saw a poor widow put in two small copper coins. He said, ‘Truly I tell you, this poor widow has put in more than all of them, for all of them have contributed out of their abundance, but she, out of her poverty, has put in all she had to live on.’
From a Christian point of view, it is absurd to be concerned about being dependent. We believe the universe exists because God created it and continues to exist because God wills its continuance. I have, therefore, always been entirely reliant on God, so why should my dependence on other people now bother me?
Finally, even as a patient, I can make things better. For the sake of argument, suppose that I am so sick that I can only receive care. (I’m not, yet.) Even then, I can respond to the care I receive with heartfelt gratitude. Gratitude seems like a small virtue; how could it matter?
Gratitude matters because heartfelt gratitude is the appropriate response when you receive a sincere act of care. Sincere care is more than just the caregiver’s job; it expresses their commitment to your well-being. In a doctor-patient relationship motivated by care, the doctor is emotionally committed to the patient’s well-being. She may commit to professional norms or to fulfilling her moral duties. As a patient at the end of life, I want a doctor who cares, whereas, with an accountant, it is sufficient that he is trustworthy.
My sincere gratitude will reinforce my caregiver’s behaviour and motivations. Thus, you reinforce a healthcare system devoted to care, meeting the consequentialist goal. But that’s not all; their caregiving and your gratitude hallow the moment that you and your caregiver share. It will be there, glowing, when both of you are dead, for eternity.
Some happy news: I am now a Canadian! After years of work, I took my citizenship oath last week. I’m also a US citizen, but we’ve made our home here. I’m much more at home with this country and its values. My family came to Ontario from Scotland at the end of the 18th century. Now I’m back where I belong.
Unfortunately, someone screwed up the anesthesia during my ablation. I woke up in the middle of the procedure and asked, “Should I be feeling something burning right in the middle of my chest?” The startled surgeon replied, “No. And why are you even talking to me?” Regardless, the pacemaker and the ablation gave many years of freedom from AF.
The world becomes a better place as gratitude is given, returned and passed on- an infinitely renewable resource. Thanks to you and your writing, we all pause and savor the miraculous exchanges we all can share, and banish our more superficial currencies of greed and fear. Thank you Bill.
Bill, Grateful as always for the thoughtfulness. I also appreciate the reflections on human dignity. I am not sure if it is a disagreement or not, but I believe you may have magnified your agency greatly during the course of this illness. Your reach in communicating profound truths to people, the many notes of shared suffering with other patients, the columns, and the articles, all speak to an important influence in the lives of others. I cannot help but think that is very definition of agency, even if we miss the days or rock climbing, riding and running.