I am a doctor working both in the UK and in Baltimore. Recently I took care of a patient at a hospital in the US who was bleeding to death. Advanced cancer was consuming his body. Doctors at another hospital said there was nothing more they could do, but his family desperately wanted him to live so they brought him to our hospital.
The fistulas in his abdomen were so large, his bowels were open to the air. Blood frequently gushed out of his wounds, necessitating blood transfusions and other desperate measures. The only way to stop the bleeding was to push hard on these wounds, which inflicted excruciating pain. Despite these aggressive treatments, there was no hope of long-term survival.
His family was not ready to let him go and so they told us to take any measures possible to keep him alive. In order to do this, I would have to crack his ribs during chest compressions and electrocute him in an attempt to restart his heart. Regardless of whether we could keep the heart beating, the rest of his body would still be irreparably consumed by cancer.
Our family debates a lot of things over our dinner table – the best Looney Toon character, politics, whether or not (and where or when) something is appropriate… For many of these topics, there are no right answers and no wrong answers – just a whole lot of discussion and opinions.
A few months ago, on the heels of the Health 2.0 conference, a small group of us gathered in a San Francisco kitchen for one of the most powerful experiences most of us had ever had around a dinner table.
Here is a little appreciated fact: Patients cannot order medical care; they can only accept or refuse it.
Only a doctor can order medical treatment. In an extreme medical situation, the doctor can offer CPR, but it is the patient’s job to accept or reject.
Any patient can refuse CPR. This refusal is known as Do Not Resuscitate or DNR, and for obvious reasons needs to be made ahead of time. The question is, when is making the decision to be DNR appropriate?
A further definition is needed. DNR (and its colleague, Do Not Intubate, DNI) is not the same as DNT, or Do Not Treat. A patient, at their discretion, may receive maximal medical care, including drugs, dialysis and surgery, and still be DNR. The DNR order in that situation is simply a line that the patient will not allow the doctors to cross. “Do everything you can to help me, but if it fails I do not want to end my life on a machine or with some gorilla pounding on my chest.”
On the other hand, a DNR can be a part of a hospice or palliative care program, so that all care is focused on comfort and not treatment. It is even possible, in very unusual circumstances, to receive hospice care without being DNR. A DNR order is like any medical decision, it can be changed if appropriate. DNR is not the same as “pulling the plug.”
How aggressive to be in receiving medical care is a personal decision. In order to make certain that our individual desires are followed it is critical that, as much as possible, these decisions be made ahead of time. This avoids panic, confusion, and guilt. In that spirit, let us review a few cases.
Ben is a 54-year-old gentleman with lung cancer, which has spread to bones and liver and is growing despite the third chemotherapy. His doctors inform him that a fourth chemotherapy has a 5% chance of helping him and a 20% chance of killing him. He wants to try the chemo. His physician says, “OK Ben, we will order the chemo but if things fall apart and your body starts to fail and we cannot fix it, do you want to be put on a machine?” Do you think Ben should make himself DNR?
Ben made himself DNR. He survived the chemo, but the cancer progressed and he died one month later.
Once again we’re hosting the annual Engage with Grace blogrally. Engage with Grace aims to get people talking about their wishes for end of life and advanced care. If you want to host this on your blog please do and feel free to get the html for this post here — Matthew Holt
One of our favorite things we ever heard Steve Jobs say is … “If you live each day as if it was your last, someday you’ll most certainly be right.” We love it for three reasons: 1) It reminds all of us that living with intention is one of the most important things we can do. 2) It reminds all of us that one day will be our last. 3) It’s a great example of how Steve Jobs just made most things (even things about death – even things he was quoting) sound better.
Most of us do pretty well with the living with intention part – but the dying thing? Not so much. And maybe that doesn’t bother us so much as individuals because heck, we’re not going to die anyway!! That’s one of those things that happens to other people …
Then one day it does – happen to someone else. But it’s someone that we love. And everything about our perspective on end of life changes.
If you haven’t personally had the experience of seeing or helping a loved one navigate the incredible complexities of terminal illness, then just ask someone who has. Chances are nearly 3 out of 4 of those stories will be bad ones – involving actions and decisions that were at odds with that person’s values. And the worst part about it? Most of this mess is unintentional – no one is deliberately trying to make anyone else suffer – it’s just that few of us are taking the time to figure out our own preferences for what we’d like when our time is near, making sure those preferences are known, and appointing someone to advocate on our behalf.
Goodness, you might be wondering, just what are we getting at and why are we keeping you from stretching out on the couch preparing your belly for onslaught?
Thanksgiving is a time for gathering, for communing, and for thinking hard together with friends and family about the things that matter. Here’s the crazy thing – in the wake of one of the most intense political seasons in recent history, one of the safest topics to debate around the table this year might just be that one last taboo: end of life planning. And you know what? It’s also one of the most important.
Here’s one debate nobody wants to have – deciding on behalf of a loved one how to handle tough decisions at the end of their life. And there is no greater gift you can give your loved ones than saving them from that agony. So let’s take that off the table right now, this weekend. Know what you want at the end of your life; know the preferences of your loved ones. Print out this one slide with just these five questions on it.
The human capacity to deny reality is one of our defining characteristics. Evolutionarily, it has often served us well, inspiring us to press onward against long odds. Without denial, the American settlers might have aborted their westward trek somewhere around Pittsburgh; Steve Jobs might thrown up his hands after the demise of the Lisa; and Martin Luther King’s famous speech might have been entitled, “I Have a Strategic Plan and a Draft Budget.”
Yet when danger or failure is just around the corner, denial can be dysfunctional (see Karl Rove on Fox News), even suicidal (see climate change and Superstorm Sandy).
Healthcare is no exception. Emerging evidence suggests that patients and their surrogates frequently engage in massive denial when it comes to prognosis near the end of life. While understandable – denial is often the way that people remove the “less” from “hopeless” – it can lead to terrible decisions, with bad consequences for both the individual patient and society.
First, there is evidence that individuals charged with making decisions for their loved ones (“surrogate decision-makers”) simply don’t believe that physicians can prognosticate accurately. In a 2009 study, UCSF’s Lucas Zier found that nearly two-thirds of surrogates gave little credence to their physicians’ predictions of futility. Driven by this skepticism, one-in-three would elect continued life-sustaining treatments even after the doctor offered their loved one a less than 1% chance of survival.
In a more recent study by Zier and colleagues, 80 surrogates of critically ill patients were given hypothetical prognostic statements regarding their loved ones. The statements ranged from “he will definitely survive” to “he will definitely not survive,” with 14 statements in between (including some that offered percentages, such as “he has a [10%, or a 50%, or a 90%] chance of survival”). After hearing these statements, surrogates were asked to interpret them and offer their own survival estimates.
When the prognosis was optimistic (“definitely survive” or “90%” survival odds), surrogates’ estimates were in sync with those of the physicians. But when the prognosis was pessimistic (“definitely not survive” or “he has a 5% chance of surviving”), surrogates’ interpretations took a sharp turn toward optimism. For example, surrogates believed that when the doctor offered a 5% survival chance, the patient’s true chance of living was at least three times that; some thought it was as high as 40%. Remarkably, when asked later to explain this discordance, many surrogates struggled. Said one, “I’m not coming up with good words to explain this [trend] because I was not aware I was doing this.” The authors identified two main themes to explain their findings: surrogates’ need to be optimistic in the face of serious illness (either as a coping mechanism for themselves or to buck up their loved one), and surrogates’ beliefs that their loved one possessed attributes unknown to the physician, attributes that would result in better-than-predicted survival (the “he’s a fighter” argument).
I felt sad when I went to make rounds in the hospital.
One of my patients, a colleague, had been readmitted in poor condition for recurrence of a primary lung sarcoma.
I spent a few minutes examining Dennis and chatting. He then, with a quizzical look, said, “Jim, I’m going to have to sue you. I know I’m dying. My wife Alice and the kids are still pretty young.” He saw my look of surprise and added, “You know, I don’t have much life insurance or other very significant funds for them to live on. It’s nothing personal. I know you’ve given me good care, but my wife is upset and tends to blame you for the outcome. I guess the hospital and others will be named.”
There wasn’t much more for me to say at the time except, “Dennis I can find another attending for you if you’d like.” He replied, “No, I want to stay with you.”
Dennis was a well liked family doctor. About five years earlier a “coin lesion” was discovered on a chest X-Ray. This 2cm spot in the right upper lobe had a smooth rounded border and didn’t contain calcium. A CT scan showed no enlarged lymph nodes and no other spots elsewhere. A needle biopsy of the spot was not diagnostic. We knew the spot was new because an X-Ray five years earlier was normal. He hadn’t traveled to an area where Valley Fever or other fungal infections were common.
This was sensational when I saw it live at TEDMED and it’s even more amazing second time around. Sekou & Steve do 18 minutes of beat poetry & intensity–”we know when life ends, but when does death begin!