An unpopular part of caregiving
What defines a successful treatment?
In my offline life, I spent the past two weeks working on a project that I had been expressly asked not to do. So, reading this post on the importance of respecting other people’s wishes about their lives hit home.
I know that supporting the people in my life means supporting them to do what they want, not what I want them to want. My actions, though, aren’t always in line with that. Far too often, my version of “supporting” means pushing, nudging, and cajoling them to agree with what I want for them.
Vinay Prasad, an oncologist, writes about how doctors are trained to diagnose and treat, so that’s what they do. Usually, of course, this is great. Sometimes, though, diagnosing and treating patients isn’t in that patient’s best interest.
“my patient wants to keep smoking 4 packs a day and just wants to work on his cars. I asked him bluntly if he felt lung cancer screening was worth it.
What do I know? They just told me where to show up for the scan. I assumed they knew what they were doing. I never felt bad until they started on me.
I asked him what his goals in life were.
I don’t care how long I live. I just want to spend whatever time I have doing what I want.
It couldn’t be clearer to me. Had this man been properly counseled, he would likely have declined screening.
Some might say that had it not been for screening, he would be dead already. That is something an inexperienced and arrogant doctor would think because an experienced and humble doctor would know that we have no idea what the counterfactual would be.”
In this case, the doctors pushed the patient to undergo cancer treatments that weren’t backed by strong evidence. They treated him because, well, that’s what they’re supposed to do: try to make the cancer go away. That’s what they do, even when the treatment comes with major side effects and risks…and may not help the patient achieve his personal goals.
Prasad muses: “His whole treatment course is unproven. Perhaps the chemo is just treating the malpractice lawyers rather than the patient in front of you.”
Some of the treatments he discusses don’t seem to lengthen the patient’s life, either. A few screening programs have been deprioritized because an earlier diagnosis doesn’t improve the outcome, meaning there’s a dramatic increase in the number of people who know they have a condition without improving their quality of life or the mortality rate. Count me among the people who would be happy to unknowingly die with cancer if that cancer is unlikely to be the thing that actually kills me.
Lots of us find ourselves in terrible conversations with the treatment team, where they’re saying they cannot tell us what to expect because there is no relevant data. We’ve moved outside the world of scientific studies and into the world of educated guesses and anecdotes. We have to help someone make life or death decisions without any reliable information on what the consequences might be.
When someone we love is diagnosed, we do tons of research. We come to know as much about the condition as any doctor. Yet so often we’re so focused on finding the best treatment that we lose sight of whether or not treatment is in their best interest.
Often people who are paralyzed with indecision know what the right choice is, they just refuse to accept that there isn’t a better option.
I’ve spent a lot of time lately thinking about how much I struggle with accepting reality. How often are we pushing for a certain outcome because we wish reality were different? Are we really convinced this option will achieve our goals or do we just wish we could do something to change what we know in our hearts is beyond our power to change? Have we listened, really listened, to what they want? The MDs don’t have time to care about what’s important to them, so that task is one more of our responsibilities as caregiver.
We’ve probably cried our way through some made for TV movie about someone with a terminal illness who stops treatment and decides to spend their final weeks on an epic road trip. When we’re cast in that supporting role, we forget to offer ticking one last thing off the bucket list as an option.
In the US, the vast majority of patients are enrolled in hospice only days before they die.1 We are just so eager for the doctors to bring us a medical miracle. The sad thing is, patients who opt to stop treatment and receive only palliative care often live longer.2 Given the risks we accept when agreeing to Hail Mary treatments, it makes sense.
Even when a condition isn’t terminal, doing everything a doctor advises may not be in their best interest. Tests to diagnose and monitor are disruptive and have risks of their own. People rarely stop to ask themselves: if they find something, will they want undergo treatment? Is the benefit worth the risk in this particular case, for this specific person? Each new medication and procedure has impacts that grow exponentially as they interact with each other.
On caregiving sites run by home care agencies, health insurance companies, and government organizations, there’s an emphasis on compliance. Caregivers are urged to ensure patients follow the orders of the treatment team. They want to make sure the tests are done, the medications are taken, and the diets are followed. When the goals of the patient and the treatment team aren’t in alignment, our role as advocate means standing up for the patient’s right to make their own choices.
As caregivers, we have to remember that obedience is never the point of treatment. Living another hour or week or month or year is the point of treatment for some patients. Living a life on their own terms is the point of treatment for some patients. Being comfortable is the point of treatment for some patients.
Regardless of the data, the standard treatment guidelines, and the advice of the treatment team, the patient gets to decide what their goals are. The default of modern medicine is to eradicate disease at any cost. That counts as success in a chart.
It doesn’t always feel like success to the person living it.
“Most patients enroll in hospice very close to the time of death. For instance, approximately half will die within 3 weeks and 35.7% of patients die within 1 week. Moreover, among all patients, the percentage referred to hospice for just 3 days or less doubled over the past decade to 9.8% from 4.6%.” PMID: 24922330
“the mean survival was 29 days longer for hospice patients than for nonhospice patients. The mean survival period was also significantly longer for the hospice patients with CHF, lung cancer, pancreatic cancer, and marginally significant for colon cancer (P=0.08). Mean survival was not significantly different (statistically) for hospice vs. nonhospice patients with breast or prostate cancer. Across groups studied, hospice enrollment is not significantly associated with shorter survival, but for certain terminally ill patients, hospice is associated with longer survival times.” DOI: 10.1016/j.jpainsymman.2006.10.010