We've known for years that cancer patients think their life expectancy is considerably greater than it really is--and that their oncologists think it is. This kind of wishful thinking has serious consequences: patients who believe they have years to live are likely to want their doctors to do everything possible to prolong their lives, even if the treatment is painful and risky. Patients who believe their time is very limited tend to want their doctors to provide treatment geared to promoting quality of life. This past week, a new study published in JAMA Internal Medicine by Melissa Wachterman and colleagues reports a similar gap between dialysis patients and their nephrologists.
A small group of dialysis patients (half of whom were over age 70) were interviewed along with their kidney doctors. The patients were significantly more likely than the doctors to believe they would be alive in one year or in five years, and were almost twice as likely as their doctors to think they were candidates for a kidney transplant. As with cancer patients, the majority of kidney failure patients who were pretty sure they would be alive in a year wanted medical treatment focused on extending life (though just under half did not) but fewer than ten percent of those patients who were not so sure they would live a year wanted a focus on life prolongation.
This study confirms how important it is for patients to understand the nature of their illness. All too often, physicians try to determine their patients' goals of care and corresponding treatment preferences without first making sure patients know their prognosis. But people rarely have fixed views about what is best for them--whether living longer or being comfortable or remaining independent is paramount depends on their situation. Physicians need to be clear with their patients about what they can expect and patients should push their doctors to tell them.
What is not addressed in the Wachterman study--and what may be even more important for patients to grasp if they are to make informed decisions about treatment--is the overall trajectory of their illness, not just prognosis in the narrow sense of survival time. Patients need to know in general terms what they are likely to experience in the coming weeks, months, or years: will they be able to stay at home or will they need extensive personal assistance, perhaps living in a nursing home? Will they need to spend a lot of time in the hospital? Are they likely to experience frequent relapses followed by improvement or should they anticipate a slow downward slide? Planning for future care is tremendously important for every person with a serious illness. And gaining a good understanding of one's general medical condition is the crucial first step in advance care planning.
Great post - I read about your blog in the NY Times today. I think it's alarming how little data is presented to patients when they have to make such huge decisions that so greatly impact their lives and the lives of those they love. My 73 year old father had a heart attack and could not be weaned off his respirator and a doctor encouraged us to put in a trache. His exact words, "He'll be breathing on his own in 2 weeks." six months later my brothers walked me down the aisle at my wedding while we skyped in my father who remained in a nursing home, on a trache. He was now in far worse condition. 9 months after his heart attack my siblings and I fought like an army for my father's death. Despite being on every form life support possible we were treated like criminals. After his death, we began to look into the data. A 73 year old man with a heart like my dad's had a 10% chance of breathing on his own again. I guarantee you, had someone shown us that data, we never would have put him through those 9 months of hell. Patients need statistics and real data to make informed decisions, and a few visits to nursing homes prior to getting sick isn't a bad idea either.
As a former clinical research nurse, and a former hospice nurse, and a former oncology nurse, I can tell you this topic fascinates me.
Having people understand their illnesses is very important, but wouldn't you agree that perhaps half of even highly educated elderly people can't even name all the medications they're taking or state the meds' indications? People are incredibly ignorant when it comes to healthcare, and explaining things takes an enormous amount of time. The 10 minute consult doesn't accomplish that, especially when one considers retention rates - it is simply more cost effective to let ignorance be bliss.
What we really need is solid science teaching in elementary, middle, and high schools so people can understand what the h-ll hypertension is or what Stage IV cancer REALLY means. Doctors don't/can't explain much to people who don't possess the ability to understand the info presented, if presented at all.
I thought this was an important post. Giving people an idea of what they might expect as an illness trajectory over the next year or 18 months can be helpful. BUT - and this is a big but - inevitably, doctors are telling patients with, say, a Stage IV cancer diagnosis, what the AVERAGE arc of experience is with this particular disease. The reason it is so hard to arrive at informed decisions to forego aggressive treatments is, neither the doctor nor anyone else can predict who will go into remission from such a treatment, and who won't - all they can say is that it's unlikely. But because each individual is different, and because our ability to stratify each person's disease profile from other cases is still so rudimentary (even with modern gene assays, they're looking at, what, 30 factors? out of how many?), I think we are still a long way from being able to say to someone, "YOUR disease is going to progress no matter what we do, and you'll probably not be here in 2 years." All we can say with any confidence is, "Most people with this level of this disease progress despite best efforts and don't survive 2 years." But each of us hopes to be the outlier, the one who defies the odds. And there are just enough people who do pull that off - who survive Stage IV cancers, for example - to give the rest of us rope (probably to hang ourselves with)...
As an RN, I have worked in oncology, home care and hospice care settings. I very much appreciate Dr. Gillick's point of view, but not certain you'll get docs, esp. surgeons, to have any grasp of future care needs of an elderly patient related to whatever medical intervention they might perform on the patient. I have an elderly relative who was told: "I can do this open-heart surgery now to fix you, or you can go home and be dead in two weeks" (he has no memory of his consenting to surgery). Actually, death is the very easiest complication to deal with.
Most docs don't want to admit, or are perhaps oblivious to, the huge size of the gray area between a surgery's (or intervention's) perfect outcome and death. Nurses simply by proximity are far more familiar with what is required of patients and their families to rehabilitate from a surgery, to comply with a particular regimen, or to manage a chronic illness. I have encountered many docs that seem to live in a bubble that protects them from the nuts and bolts reality of the pt's post-op or post-intervention experience. Many seem honestly ignorant of that trajectory. My relative's surgeon bowed out of his care once he left the hospital (after 10 days on a respirator). He wasn't around for the aftermath of months in a nursing home, the infected leg wound, the urinary catheter, the bowel obstruction, the congestive heart failure, and two more hospitalizations for a ghastly C-diff infection that he acquired in the nursing home. Two years later (now 88 yo), he is at home, on hospice.
The consequences of debility, cognitive decline and poor quality of life that can arise out of medical interventions are NOT fully explained to the elderly patient, or any pt, as a rule. Docs don't want to "go there" with the pt, discussion-wise, and if they do, those conversations take time, which the doc does not have. Some docs don't seem to want to admit defeat, as it were. The MD's fear of liability may also be a factor. Obama was excoriated for the notion of what were characterized as "death panels", when all he was trying to do was get a code added to Medicare billing so a doc could actually get reimbursed for taking the time to discuss a patient's advance directive in light of their current health circumstances. It would help us all "get it right" on behalf of the pt if the patient's own wishes were more clearly expressed to their family and to their MD, preferably prior to the health crisis itself. A perfect-world ideal, granted, but a worthy and important goal.
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