People have described the clinical trajectory of a patient with advanced cancer’s life as “falling off a cliff.” This means that the person can seem to be doing relatively well, and then, once the disease exceeds a certain threshold, the person deteriorates progressively, in a relatively short period of time (weeks to months), until death. For most patients with advanced cancer, this metaphor of “falling off a cliff” still applies. So what’s different now? There is a new class of drugs, collectively referred to as “immunotherapy” or “targeted therapy” that, for some people with advanced cancer, can cause the disease to be arrested, even seem to disappear for a few. And this control can occasionally last for a long time- even years. A few oncologists are even using the word “cure.” Continuing with the metaphor, I feel like the individuals for whom these new therapies are working have been given a parachute that opens as they are “falling off the cliff” and allows them to land safely at the bottom, unharmed.
The problem is, we can’t really tell yet which person who is a candidate for these new therapies will benefit and who won’t. And these therapies all have potential toxicities, some severe, some even life-threatening or lethal. So if you’re a person with advanced cancer being offered one of these new therapies, staying with the metaphor, it’s as though you’re given a sack with a parachute in it- but, until you pull your ripcord, you don’t know if it’s a working parachute or one with holes in it. Even worse, these “faulty parachutes” may catch onto ledges or brush along the cliff and cause additional injuries on the way down, making the fall to the bottom even more difficult and painful than if you never had a parachute in the first place.
Before we had these drugs- before we could offer a possibly working parachute- people “knew” what was coming and could prepare. There was some uncertainty regarding
when, and how- but not what was going to happen. This is where our current model of hospice care was developed, and it works pretty well. Knowing you are falling off a cliff without a parachute, caregivers focus on whatever interventions can be provided to have you feel as safe and comfortable as possible. None of this changes what’s going to happen once you reach the bottom, but it makes the fall as easy as it can be. And for your loved ones who will be the survivors, they have as easy a time dealing with their loss as is possible.
Now, with most current regulations, if you receive the parachute and pull the ripcord, hospice care is not an option – at least not until it’s clear that this parachute doesn’t function – and that can be perilously close to the bottom of the fall (i.e., days before end of life). During the time where it’s unknown if and how well this treatment is going to work, you and your family may be (understandably) focusing on hoping for the working parachute, even as you get closer and closer to the bottom. Uncertainty may dominate the experience for much of the time you have. And most of us don’t deal with uncertainty very well.
So what can be done? Palliative care can be a critical support during the fall. This can do much of what hospice care can do, but while still waiting to see if you have a parachute that is going to work, at least for a while. Palliative care can provide medications to treat symptoms causing suffering, spiritual support, care coordination, and care planning for whatever the future might bring. Unfortunately, many communities have little to no access (yet) to community-based palliative care (care outside of the hospital), though that is changing.
I think the most important thing to be done is to talk. In a recent Wall Street Journal article the author described six categories of the kind of things one can talk about with someone who’s on the way down from the top of the cliff. These are: conversations about love, “identity messages” (conversations that frame who you are), religious/spiritual talks, everyday talk, difficult relationship talk (attempting to repair hurt of some kind), and “instrumental death talk” (about funerals, end-of-life care, burial, etc.). To these I would add a few more. I think talking about uncertainty can be supportive. “I imagine it must be hard living with so much uncertainty- about whether this treatment is going to work, about what new symptoms are going to appear, about whether you’ll feel better tomorrow…” or something like that can show empathy and caring about a topic we don’t talk openly about very much. I also think sharing and discussing fears and hopes (the focus of the first two questions from the game Hello) can provide comfort and meaning for the person with the disease, as well as opportunities to help (if asked).
One final use of the metaphor. Maybe conversations are a different kind of parachute, one that opens regardless of how well the first one is functioning. This parachute slows down the fall so that you have time to appreciate various things along the way- the blue sky, the warm air, the cool breeze, everything that makes life worth living. This parachute doesn’t slow you down enough to prevent you from hitting the bottom, but it allows you and everyone you’ve been in conversation with to have found some pleasure and meaning together. Instead of the hard canyon floor being at the bottom of the fall, there is a big, soft pillow. The fall into it is still fatal, but it’s an end that is embracing and comforting, and leaves the survivors capable of getting up from the fall and moving on with their lives with the memories of their loved ones’ words and deeds to guide and comfort them going forward.
Jeffrey Cohn MD, MHCM is a former medical oncologist/hematologist from Ambler, PA. He is currently the Medical Director for Common Practice and a personal/leadership coach for physicians.