Tatiana Fofanova is the CEO of Koda Health. She is dealing with one of the most difficult parts of health care. How do you get patients wishes in the case of end of life or other critical illness made in advance and delivered to medical professionals? Koda Health has not only figured out how to get this option to patients but also include the responses into Epic and other EMRs so that clinicians can see advanced directives and much more. She gave me a full demonstration of what is a very important and necessary tool — Matthew Holt
Why Narratives Do (and Should) Matter in Bioethics
There is a fascinating recent decision from the Indian Supreme Court on the Shanbaug case, regarding a woman who has been in a persistent vegetative state (PVS) for over 37 years. A petitioner who had written a book on Shanbaug (Pinky Viranai) argued for a withdrawal of life support. Shanbaug had no family to intervene, but hospital staff resisted, and the Court ultimately sided with them. While unflinchingly examining the dehumanizing aspects of PVS, the Court offers a remarkable affirmation of the good will of the staff who have taken care of Shanbaug:
[I]t is evident that the KEM Hospital staff right from the Dean, including the present Dean Dr. Sanjay Oak and down to the staff nurses and para-medical staff have been looking after Aruna for 38 years day and night. What they have done is simply marvelous. They feed Aruna, wash her, bathe her, cut her nails, and generally take care of her, and they have been doing this not on a few occasions but day and night, year after year. The whole country must learn the meaning of dedication and sacrifice from the KEM hospital staff. In 38 years Aruna has not developed one bed sore. It is thus obvious that the KEM hospital staff has developed an emotional bonding and attachment to Aruna Shanbaug, and in a sense they are her real family today.
After a scholarly survey of many countries and U.S. states’ laws on withdrawal of life support, the Court concludes:
A decision has to be taken to discontinue life support either by the parents or the spouse or other close relatives, or in the absence of any of them, such a decision can be taken even by a person or a body of persons acting as a next friend. It can also be taken by the doctors attending the patient. However, the decision should be taken bona fide in the best interest of the patient. . . .Continue reading…
How Much Will It Cost to Let Me Die?
It was probably the most awkward question I had been asked before, and I did not have an answer…
He was a middle-aged gentleman, neatly dressed—very simple and unassuming. He blended like a lifeless statue in the waiting area. What sparked my notice of him was his accompanying robust file, crammed with familiar pink discharge slips from the ED.
He was clearly what we call a “frequent flyer”, but this would be his first visit in our surgical clinic.
I escorted him into the assessment room, exchanging the usual salutations as he edged unto the exam table, wincing with discomfort. His chief complaint read, “acute abdominal pain and constipation x 1 week.”
Vying to understand more about his issue, I asked, “Sir, how long have you had this problem?” Embarrassed, he lowered his head.
Silence.
I retreated and instead remarked, “Ok. Let’s start from today. Where do you have the most pain?”
Tenderly, his frail digits unbuttoned his shirt, exposing a wasted torso, which hoisted an extraordinarily distended abdomen. It appeared rigid and tense. I reached out to gently palpate it to confirm the realism of my observations. He flinched. His stoic affect instantly collapsed into an aching frown.
Tears welled in his eyes. Something terrible was going on inside. Cancer.
He needed to be admitted and surgery would be very likely, if not too late. I was aplomb in my explanation of his condition, feeling proud of my thoroughness and precision. Yet, seemingly unengaged, he politely interrupted and asked, “How much will it cost to let me die?”
I paused. It was probably the most awkward question I had been asked before, and I did not have an answer. During my training, I was taught to order tests wisely, to avoid superfluous exams and to minimize inefficiency of resources; in spite of this, I had not ever stopped to think about cost in this context.
In my mind, it was my duty to provide the best, quality care to extend life, foremost. Yet, his concern was different. How much would it cost to die?
Nothing.
We Love to Talk About Our Lives. What About Our Deaths?
Most of us find ourselves pretty fascinating… flipping through photos and slowing down for the ones where we’re included, tweeting our favorite tidbits of information, facebook-ing progress on this or that…
We find other people captivating as well. In fact, there’s a meme going around on facebook where people share a handful of things that most people don’t know about them – and there’s a great joy in learning these tidbits about the friends and family we think we know so well.
This Thanksgiving, we’re asking our friends and family to try this exercise, but with a twist – we want to know how they’d answer just five questions on their end-of-life preferences.
What? Are you CRAZY? Talk about how you’d want to die over Thanksgiving? Yup – that’s exactly what we’re suggesting. You know why? Because this is a conversation you absolutely want to have exactly when you DON’T need to have it… and it’s a conversation you need to have with your loved ones. Our hope for you this Thanksgiving is that you’ll have the luxury of checking both those boxes.
When Your Doctor Dies
Several studies have explored the experience of grief that physicians feel when they lose a patient.
But what about when the patient loses a physician—when the doctor dies?
Dr. K was a well-known child psychiatrist, a loving husband, a father of two, and an irreplaceable support and friend for a number of children suffering from trauma, schizophrenia, bipolar disorder, autism and other challenging psychiatric conditions. Earlier this year, Dr. K passed away in a tragic accident while vacationing with his family. His loss was nearly unbearable for most of us.
Days after the funeral, a colleague of Dr. K inquired into whose care his patients would be transferred. She was shocked to hear that one of his patients, a young teenager suffering from Asperger’s syndrome, anxiety, and depression, had overdosed on his medication and committed suicide the day he heard of Dr. K’s death. It was no coincidence.
Behind the family members, close friends, colleagues, and acquaintances are the physician’s patients. They are part of a separate, almost secret life that the physician leads. And yet, the patient is whom the physician spends more time with than anyone else—they are in some ways the truest reflection of the doctor. While family and others grieve together in collective remembrance, patients often do so isolated, alone, confidential.
Informed Refusal
Before undergoing many health care interventions, patients are asked to give their informed consent. In most cases, it represents a mere formality. The patient has come to the healthcare facility for the express purpose of undergoing the test or treatment, and after a quick explanation, the patient signs the consent form. But not always – sometimes patients elect not to go through with it.
I know a woman in her late 70s, a highly accomplished health professional with a long and remarkably distinguished record of career achievement, who was recently diagnosed with cancer. Her physician advised a complete diagnostic workup to determine how far the disease has spread, to be followed by courses of radiation and chemotherapy. A vast and sophisticated medical armamentarium, unprecedented in the history of medicine, stands at the ready to take the full measure of her disease and then beat it back.
Yet after her oncologist carefully explained the benefits, risks, and alternatives to the recommended course, she declined to proceed further. Instead of launching into an arduous medical regimen, she has chosen to focus the remainder of her time and attention elsewhere, on matters outside of medicine. Why?
On hearing such a story, some of my medical colleagues question the patient’s soundness of mind. Could she be depressed? Might she be in the early stages of dementia? Could she have simply failed to grasp the full gravity of her situation? To them, the failure to take advantage of the wonders of modern medicine smacks of irrationality. The solution? Her physicians need to sit her down again and explain the situation more clearly. Should this fail to elicit her consent, perhaps a psychiatry consult would be in order.
Yet to those who know her, these explanations are unsatisfactory. We cannot attribute her decision to a lack of intelligence or sophistication about healthcare. She has spent her entire career in the field, and helped to care for countless patients with life-threatening conditions, many of whom eventually died. She knows what the care of such patients looks and feels like from firsthand experience. She understands the risks of declining further treatment at least as well as many of the health professionals caring for her.
Let’s Have Dinner and Talk About Death: Indiegogo Campaign
When we launched our Indiegogo campaign earlier this month we blew through our initial goal – raising $7000 in a matter of hours – with funds coming from around the globe.
This makes it clear that people are ready for this conversation, and gives us great momentum as developers continue to work around the clock finishing our site and interactive platform – Let’s Have Dinner and Talk About Death.
Today marks the final day for the campaign.
We are now confident we can break $20,000 – enabling our Global Launch on August 24th in partnership with the Elisabeth Kubler-Ross Foundation.
Support the campaign here.
Hippocratic Hypocrisy: When It Comes to CPR, Is Less Care Actually Better Care?
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.
Let’s Have Dinner and Talk About Death
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.
To DNR or Not to DNR
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.
