"Unfortunately, your husband has end-stage renal disease. He has a 'Do Not Resuscitate order in his chart. And now he is on a downhill trajectory that will lead to death within days or weeks. Should we continue his treatment?"
Or...
"Our medical team has done everything we can, but your wife has dementia, and is not responding to our treatment. It's time to make a decision. We can stop now, and make her comfortable. We can turn off her pacemaker."
These are the types of conversations that should be happening more often in hospitals when patients are near the end. But in at least one hospital, they are not happening anywhere near as promptly or as much as they should.
That's according to a report in the Archives of Internal Medicine. Researchers at Ronald Reagan UCLA Medical Center and RAND Corp. examined medical records of nearly 500 terminally ill patients to see if they were appropriately advised with a conversation that would lead to better palliative care.
"These data suggest that patient goals for medical care and careful weighing of the burdens and benefits of treatments in light of clinical realities may not always drive the care that seriously ill hospitalized patients receive," wrote the authors, Anne M. Walling, MD and Neil S. Wenger, MD.
"However, there has not been a systematic, clinically detailed measurement of the quality of care planning, palliation and symptom management among dying inpatients," the report said.
In a nutshell, they said, hospitals don't have standard process tools that trigger these kinds of discussions in a timely way. "Palliative care and ethics consultations, and — to a degree — family meetings occurred relatively infrequently given the vulnerable patient population," they wrote.
While the researchers said in an interview that they don't think hospitals are deliberately avoiding these conversations to continue ramping up charges, they acknowledge there is a lot of money at stake.
The U.S. paid hospitals and doctors $50 billion for care provided to Medicare patients during their last two years of life. One dollar in every 10 healthcare dollars is spent in the last year of life, and $2.70 of every $10 is spent by Medicare.
The researchers devised a list of 16 indicators for appropriate care in dying patients, and found that 30% of the time patients did not receive it.
For example, in more than half the vulnerable patients who were placed on mechanical ventilation, or admitted to the intensive care unit, there was no discussion documented in the medical record that their preferences of care was discussed with the patients and/or their family members.
The report notes that 75% of the patients who were enrolled in hospice or died an expected death had a defibrillator implanted, yet there was no discussion about whether the defibrillator should have been deactivated prior to death.
I know some people will miss the point, or choose to ignore it. For example, when a friend posted my story about the Archives study on his Facebook page last week, it provoked some comments about so-called "death panels" and former Alaska Governor Sarah Palin.
Wrote one person: "It seems like there has been a huge number of these stories coming out since the passage of Obamacare. [People are] talking about how services at the end of life are a waste of money," wrote one person in a comment.
"I can't help but think that this is propaganda aimed at convincing people that allowing their loved ones to die is better for society as a whole. Palin's 'death panels' are appearing faster than anyone had anticipated," commented the same person.
I responded to the writer that it wasn't about allowing a loved one to die. That was going to happen anyway. This is about making sure they don't die in pain, struggling to breathe, and that they aren't artificially kept alive much longer than they previously said they would want to be. And that it was about prompting doctors to have these discussions with patients and families in a more timely way, triggered by certain undisputed turning points in the patient's prognosis.
In an interview last week, I asked the authors of this report why hospitals don't have standard process measures in place. I thought that at the very least, the Joint Commission would have some guidelines.
Wenger explained, "The Joint Commission speaks to a lot of aspects [of end of life care] but the Joint Commission doesn't really look at process of care." "They talk about making sure that patients and families are well-informed. But they don't get anywhere near evaluating the technical process of care provided, or deal with any of the quality indicators."
The authors say they know that most hospitals don't have such process measures in place, and that there is a lot of variation, even within a hospital, as to when a doctor would initiate such discussions. But their list of 16 might be a good place to start.
"The goal is to get them applied broadly," Wenger says.
I realize that sometimes there are insurmountable obstacles to having these conversations. The patient is not conscious and medical power of attorney can't be determined or can't be reached. Doctors often don't have the kind of time it sometimes takes to have such conversations, and which may have to be repeated for multiple family members. Moreover cultural issues and religious beliefs may persuade family members to continue to hang on for a miracle.
But the authors make an excellent point. More hospitals should put in place standards that trigger physicians to have and document these conversations. After all, the patients who requested their DNR orders should be able to count on this much from their caregivers.