"Until years later, when I read Terence's medical records, I didn't realize that they had prodded and X-rayed and scanned and tested him even though they thought he was dying. Soon. The discharge record after his four-day stay expresses regret that they could offer no more than 'comfort care. Thirty-three days and one more hospitalization later, on Dec. 14, 2007, Terence died.
We never got a chance to say goodbye. It wasn't until less than a week before Terence's death, in the intensive-care unit as he was slipping in and out of a coma, that a young resident talked to me about our end-of-life choices and the fact that my husband was going to die. We could have done better."
It is easy to understand why the medical machine the clinicians, the tests and assorted medical procedures is poised to provide constant, often heroic interventions to save and prolong life. It is also understandable that it is difficult for this machine to screech to a halt, to acknowledge failure that a patient's life will soon end and to shift efforts to providing 'comfort care' with equivalent attention to that person's quality of life.
But it is hard for patients and our families to slow down and make that shift. By the time we make the decision to stop active treatment of our disease, many of us have spent months or years seeking a cure counting on some device or procedure or drug that will eliminate or slow the progression of our disease.
We've been living with the hopes raised by a new possible treatment...the weeks or months of waiting to see if it works and the fear when it becomes clear that it hasn't and that this failure might signal the end of our treatment options. This is followed by re-revving up the search for a new approach or drug or procedure that might work. Some of us participate in grueling clinical trials with a belief that we might be randomized to a miraculous new drug or that in doing so, we'll speed the development of a new treatment that might add time to our lives or lead to the discovery of a cure.
Ever play whack-a-mole? Seriously ill people and those who love us sometimes bring that level and type of hyper-vigilance to our illness, even when we are not particularly assertive. We become focused on each new perturbation. We are obsessed with first this symptom, then the next one, then the side effect of the treatment, then one co-morbidity and treating one of its symptoms, then on to the next. Each requires our attention, our clinicians' attention.' Each one demands tests, treatments, explanations.
We get used to living like this'we become conditioned to investing our energy in the pressing demands of doctors' appointments, consultations, treatment regimens, dealing with their failures, and then going on a quest to find replacements: new drugs, new tweaks, new tests. We lose sight of the overall trajectory of our condition: what are we aiming for here? Is this the way we want to spend our days?
One good thing about serious illness: if you think something can be done to cure it, you can focus on that, rather than on your pain or your loss ' of time, of functioning, of life.
When we decide to only treat our symptoms, we give up the race for the cure, so to speak. The distraction, the familiar cycle of searching and monitoring that makes us feel useful and efficacious dissolves.' Then what do we do?
One woman told me she felt like Wily Coyote going off the cliff: she had been running after cures for so long, she kept running long after there was no ground to run on.' Like Wily Coyote, she suddenly looked down and Yikes!' She crashed.
I didn't know what to do with myself once it was clear that my mom wasn't going to recover from her stroke. What should we do? How should we spend our time with her? How much? Doing what? It took us weeks to figure this out.
Shifting to a new process and the pace of palliative care can be bumpy for us, even if we have been longing for relief from the pressure to fix what's wrong.
We need help to make this transition. Our clinicians can help us recognize that we whether we are the ill person or her loved ones all feel this shift. This is an opportunity for us to re-calibrate our participation in our care.
We need people we trust who can describe palliative care and what it aims to do. With the focus on comfort rather than cure, we need new job descriptions: What should we expect? What should we look out for? What is our role relative to our clinicians now, especially the new ones? What can we do to help ourselves? How can we help our clinicians help us? The more explicit and concrete our care team can be about our roles and expectations, the better we will be able to channel our worry and energy in ways that benefit all of us.
Our care team will need to revisit these conversations with us. We need to be able to describe this new type of care back to our clinicians and to our other family members and loved ones. It will take some of us time to understand it.' We will need to be reminded and supported as new problems arise, as family members weigh in, as we each struggle to comprehend this unfamiliar approach to our care.
For some people, the decision to stop active treatment and use only palliative care is a relief, an alignment of our doubts with an emerging reality. But many of us will struggle to step away from the breathless cycle of hopes and fears and doing. Our care team nurses, doctors, therapists, family, faith community has a critical role to play in helping us not only step away but to stand together as we seek the peace and comfort that is often found only when we become still.