Tuesday, July 7, 2009
Richard Knox is an NPR science reporter who wrote a compelling account of the challenging end-of-life decisions he and his family faced when his father died. I read the first several paragraphs before I looked at the top of the article where it mentions that this piece was originally published in 1989 in the Boston Globe. Twenty years later, the story retains its relevance to the national end-of-life conversation and serves as a nice supplement to the study about CPR outcomes mentioned above.
Richard's father, Albert Knox, was 78 year old who had a history of emphysema (not oxygen dependent) and local prostate cancer for which he'd been undergoing definitive radiotherapy in an attempt to cure it. Richard receives a call one weekend from his stepmother telling him that his father's kidneys and liver are failing and that the doctors suspect his prostate cancer has metastasized but a CT scan isn't available until Monday. Richard tells his stepmother to have the doctors "do whatever is necessary" until they find out what's going on. He then strikes to the heart of the matter:
Behind the emotional turmoil, I make a mental note: In Florida, where death seems as much a part of the environment as mildew, doctors and nurses seem to expect families of terminally ill patients to "let them go" rather than fight. I have no quarrel with that. The issue for us is: What is "terminal"? And when?Step 1a and 1b in helping a patient and his family with end-of-life decisions should be to develop as much diagnostic and prognostic certainty as you possibly can (easier said than done in many cases). As it turns out, the CT scan doesn't reveal cancer, and Richard concludes that his father still has no "terminal" diagnosis. The physicians eventually conclude that pyridium (which Mr. Knox used for dysuria after prostatectomy) was to blame for his renal and/or hepatic failure. Over the coming weeks, his multisystem organ failure progresses, he develops DIC, respiratory failure, an arrhythmia, coma, ischemic toes, and undergoes successful CPR not once but THREE times.
The course is also complicated by a number of diagnostic, prognostic, and therapeutic dilemmas/misjudgment, all presenting as communication snafus (although Richard seems to give most of the physicians the benefit of the doubt):
- A nephrologist offers "a spot" of dialysis, to which Richard agrees, but then 10 minutes later she calls back and tells him that it would be too risky because of the bleeding risk.
- The hospital's only cardiologist wants Mr. Knox transferred to Orlando for more extensive electrophysiological testing, but then after the admitting physician and Orlando cardiologist reach a consensus that this transfer would be too risky, the local cardiologist childishly dismisses himself from the case (abandoning the patient). He invites himself back onto the case later after a 90 minute conversation with Richard one evening (about God knows what?).
- A neurologist mistakenly concludes that Mr. Knox is in a persistent vegetative state at one point.
"I know you have trouble seeing it from my point of view," Tommie says. "You're young. You have a lot of life ahead of you. But he's 78. He's had a good life and he'd be miserable if he couldn't be the man he was. He wouldn't understand. He wouldn't understand what has happened to him. You have to understand, Dick: I'll take him back in any condition and I'll give him the best care I can. I want him to survive! I love this man! I've loved him for 24 years! But I'm not going to do anything more to help him survive if he's going to be miserable - and Lord, would he be miserable! Is that clear?" It is. I know she's right and I assent. The "Do Not Resuscitate" order stands. But it will take me a couple of days to make my peace with the decision. And of course, the order may be moot. He may surprise us all again and survive.I'll let you read the touching conclusion. It includes the patient having a period of lucidity. From the story, it's unclear whether any physicians spoke with Mr. Knox himself about the decisions at stake.
In these types of cases, patients cross a blurry line the patient's goals of care are unlikely to be met, regardless of interventions offered. Mr. Knox appeared to wish for a certain quality of life that was not likely to be achieved after a certain point in his case. When that line appears to have been crossed, aggressive, invasive interventions should not be provided. The challenge for providers (and families) is to know where each patient's "line" is and whether it has been permanently crossed. This requires providers to a) discuss early and often what the patient's goals of care are and b) adequately prognosticate what the patient's likely survival will be BUT ALSO what the likely quality of life will be in that survival.
There has been a lot of talk lately about the specter of Medicare "rationing" at the end of life. Most of it is framed in a negative manner (without a realization that Medicare already deliberately rations care intentionally and inadvertantly based on what is and isn't reimbursed). "Bedside rationing" (a physician withholding a beneficial intervention because of the cost to someone else besides the patient) is unethical. However, if you look at cases like this, there's a significant opportunity for providers to unintentionally ration care merely by identifying patient goals and stopping/withholding burdensome, expensive therapies that won't meet those goals. This is appropriate rationing that is patient-centered. That is one of the reasons why palliative care needs to be an integral part of healthcare reform.
In the article's sidebar is a description of the strengths and weaknesses of living wills. Most states' living will forms would have likely been inadequate to help with the decisions at stake in Mr. Knox's case because of the question of whether he was "terminally ill." They rightly suggest that naming a durable power of attorney is a better strategy to ensure your preferences are honored. However, even that strategy has weaknesses (surrogates may accurately predict patients' wishes in only about 2/3 of cases and this strategy still requires providers to communicate well with the DPOA).