A rocky period for medical did-in-dying in California

On May 15, 2018, a bombshell news alert popped up on my phone. Terminally ill Californians’ right to legally receive lethal drugs from their physicians was in serious jeopardy. The Riverside County Superior Court ruled that California’s End of Life Option Act may be unconstitutional and placed the law on a temporary five day hold, pending action from the Attorney General. Two days later, my colleague and expert in medical aid-in-dying Dr. Catherine Forest, and I were set to give an educational talk to a group of Stanford physicians about California’s end of life law. The controversial law passed in 2015 during a special legislative session on healthcare and conservative opponents challenged the law’s validity immediately. After being in effect for nearly two years, the challenge finally made its way to a sympathetic judge, and our lecture would take place during a state of legal limbo.

Timeline of California’s End of Life Option Act’s legal status

Opponents argued that the law’s passage during a special session on healthcare was problematic, implying that end of life decision making and care doesn’t belong in discussions around health care. As a physician, I disagree and believe we need more open and honest discussion around death and dying, not less. California’s approach to medical aid-in-dying (also called physician assisted death) puts the patient in control – placing a great deal of responsibility on the dying patient to drive the process from start to finish. Detailed regulations set out by the statute attempt to safeguard patients against coercion, and protects physicians’ with a moral objection to decline participation. It’s designed to serve as an option for the dying, rather than to usurp high quality end of life care such as hospice and palliative care.

One in five Americans now lives in a state where terminally ill patients have access to aid-in-dying.

Data from the California Department of Public Heath shows that in 2017, 577 Californians obtained prescriptions and 374 died after ingesting the medication, the majority of whom had cancer. Patients who have requested lethal prescriptions cite loss of joy in daily activities, loss of autonomy, and loss of dignity as motivating factors. Of the seven U.S. states to legalize medical aid-in-dying, California is the most populous and ethnically diverse. One in five Americans now lives in a state where terminally ill patients have this option.

During the temporary hold, terminally ill patients and their physicians were forced to hover in a cloud of uncertainty. What did the ruling mean for patients and physicians? What if patients had started the application process but hadn’t finished? What if patients had gotten the prescription, but hadn’t picked it up yet? If the law was overturned, what would happen to Californians with terminal illnesses who hoped to have this option available? The law was still in effect during the hold, but on the fifth day, without further intervention would be invalidated. With such a short window for the Attorney General to act, I wasn’t particularly reassured. We scrambled to understand the consequences of the ruling and were left guessing what might happen when the hold expired.

In 2017, 577 Californians obtained prescriptions and 374 died after ingesting the medication – the majority of whom had cancer.

California’s Attorney General Bercerra immediately fought to keep the law in place, but to our shock, on May 25th the law was officially overturned by the Riverside County Superior Court, making writing lethal prescriptions for the terminally ill patients illegal again in California.

After a tense two weeks, on June 15, the 4th District Court of Appeals issued a stay on the lower court ruling. The law has been temporarily reinstated while this court considers the case. While the recent legal battle has been a source of confusion and frustration for terminally ill Californians and their physicians, the eventual fate of  this law remains unresolved. Even if there are no additional attempts to invalidate the law, it will “sunset” in 2026. Without further legislative action medical aid-in-dying will disappear from California yet again.

Legal battles are nothing new for proponents of medical aid-in-dying and conservative groups will continue to file suits fighting such legislation. Opponents remain adamant that despite safeguards, medical aid-in-dying laws put the elderly and the dying at risk for coercion to end their lives. Some groups oppose any artificial shortening of a patient’s life, no matter the reason. Others feel that an early death isn’t the answer to suffering, but that more resources for palliative care and hospice are more practical solutions. Since Oregon first considered its Death with Dignity legislation in the early 1990s, multiple legal standoffs have taken place in states with medical aid-in-dying laws. Such cases are time consuming, but largely unsuccessful. While most cases have been from right to life groups focused on invalidating aid-in-dying laws, a recent case against UCSF shows that legal challenges will come from multiple fronts. Despite months of expressing interest in lethal medications, Judy Dale died one day shy of meeting the law’s requirements. Her family sued UC San Francisco, arguing that the law’s allowance for physicians to refuse to participate led to their mother’s undue suffering at her death. The courts will continue to be the battleground for both sides of this controversial matter.

What it is like to be a prescribing physician? Please check out two moving stories: one from Dr. Catherine Forest, and another by geriatrician, Dr. Marina Martin. For more information and annual reports on the California End of Life Option Act, check out the California Department of Public Health.

California’s law is meant to honor patients’ desires to die with dignity, allowing them to exert a little control at the end of their lives. A recent poll found that Californians overwhelmingly support access to physician aid-in-dying. Each year, more states consider their own right-to-die legislation and it seems unlikely the public opinion will turn against it. Americans have struggled for many decades to address the needs of the dying and this legislation is just one component of a holistic, patient centered approach to this important and personal healthcare matter. Dying patients deserve better than to be taken for a ride by the legal system in their final days and I hope that one day, we will have long term resolution of this law so that Californians who choose to use it may rest in peace.

*This piece was first published in the California Society of Anesthesiologists’ Online First Blog on October 1, 2018.

Why was I asked to take off my underwear for surgery?

It can feel weird to be asked to take off your knickers… Underwear makes us feel proper, protected, clothed. Even though I get that those are concerns, there are several reasons why you may be asked to remove underwear:

Number One and Number Two

Under general anesthesia, patients sometimes pee and/or poop. It’s not pretty, it’s not always easy to know when this will happen, and we usually ask patients to use the restroom before surgery by means of prevention. If a surgery will be very short, the risk is lower. It is completely irrelevant which body part being operated on when the whole body is anesthetized and unfortunately, this can be a messy situation. The nice, clean skivvies the patient wore to the hospital are going to be peeled off and put in a biohazard bag. Patients do not necessarily bring extra underwear with them and don’t have any to wear home. Removing the garments before surgery means the patient can put those clean undies on when they wake up. We usually still have patients lie on an absorbent towel/pad, just in case. Undies or no, the nurses in the OR are going to make sure the skin is cleaned before the patient wakes up.

Time

If a surgery is long, a Foley catheter is typically placed to drain, collect, and measure urine. Placing the catheter requires sterile prep of the genital area and underwear are going to be in the way. They won’t fit properly and can apply unwanted pressure to the catheter once placed. This can even cause a pressure injury to the skin.

Spic and Span

Some people (not you, I’m sure) wear undies that are not very clean. It’s a gross over-generalization to apply that concern to everyone, but for practical reasons, it can be easier to just have everyone take them off.  If you’re having a belly surgery, your skin will usually need to be cleaned as low as your pubic bone. Knee surgery? To clean the whole knee, it has to be lifted up and the prep drips down the thigh. Those undies can get saturated with cleaning solution. They might get stained with the dye in the soap, which is rude on our part. They may not dry very quickly– and this can increase the risk of a fire during surgery (yeah – we have to worry about your pants on fire!). Realistically, the only procedures that underwear don’t get in the way are those on the chest and above.

While You Were Sleeping, We Got Back Pain

Is it more awkward to ask a patient to take off their panties or, if they absolutely have to come off, to take them off when they’re under anesthesia? Personally, I think it’s weird to wait until someone is anesthetized to take off their tighty whities. Then the patient wakes up having lost their underoos. If they need to come off for any number of reasons, I prefer the patient does it themselves. I think it’s weird to take them off in the operating room. Plus, it can take multiple people to get them off and we genuinely risk workplace injuries (back pain anyone?) to do so.

That’s nice, but maybe you still don’t want to ditch your briefs.

There may be hospital staff that get their panties in a bunch about your underpants. If you’re an adult, no one can MAKE YOU take off your clothes. If you refuse to do it, you can take your chances that your underwear will be on your body and be clean. But they may need to come off emergently (or because they interfere with the procedure you showed up to get) and that may mean they get cut off. There is dignity in controlling the removal of your own clothes, as I would personally find it more of an affront to emerge from anesthesia with clothing inexplicably missing. But that’s me. Maybe you don’t mind. There are perfectly uncomfortable mesh underwear that hospitals are likely to have on hand – meant to hold absorbent pads for post-partum or menstruating patients, or who have other reasons to need them. (To the above points, those will be promptly cut off if they are in the way, or of the patient urinates.)

When teens and adults are concerned about removing their underpants, I ask them why and offer to explain the reasons why it is called for in their particular case. Generally, I think the whole underwear things gets patients bend out of shape when they don’t feel they are being heard. Coming in for surgery is stressful, and maybe taking your tighty whities off based on the demands of a pre-op nurse is the last straw. When it comes down to it, patients are usually certain that they are just being asked to do something ridiculous, with not reasoning behind it. Secondly, they are concerned that their body will not be respected while they’re anesthetized and that it will be exposed for no good reason. By staff taking the question seriously, a dialog can form where the patient hears that they are respected, and staff have a chance to explain that this isn’t a thoughtless, nonsensical request to diminish inherent human dignity.

We have better things to do all day than play power mind games with our patients. I can’t speak for every operating room out there, but I have yet to be in an OR where patients were left exposed for no good reason. First and foremost, we respect patients’ dignity and modesty. We have lots of sheets and blankets and use them to cover whatever we can. On a practical matter, it’s really important to keep patients warm, and leaving them uncovered is super counter productive.

On the surface, most of these reasons might seem like they are solely for the benefit of the healthcare people involved, but I think they are rooted in an effort to prevent patient inconvenience from dirty, damaged, wet, stained undies and loss of dignity from being given a biohazard bag full of soiled unmentionables, and to ensure that, above all, the patient gets safe care. If you disagree and refuse to take em off, staff should listen to your concerns to find an acceptable solution.

Finding Bioethics

When I decided to study bioethics at a tiny Jewish university as an undergraduate student, I did not imagine that it would change my life and create a sustaining area of work.

At age 19, I didn’t really know what “bioethics” meant, but I enjoyed philosophy, science, and thought I might want to be a physician. In the 1990s, I read voraciously about Dolly, the famous cloned sheep, and was very interested in fertility, infertility, and reproductive technology. They gray area between right and wrong seemed like a vast, fun place to play. So I jumped in head first into a pre-medical program focusing on Jewish medical ethics. I was raised Catholic and spent a lot of time comparing Jewish, Catholic, and secular approaches to human conundrums. I gained perspective on how different people assess the same problem, or use religion or logic to argue their position or make a decision.

It was the beginning of a serious journey into the interplay between medicine and the predicaments inherent to its practice. I wasn’t quite ready to go to medical school. I had friends already trudging through their clinical rotations who said I should do something else, citing the long hours of study and “sacrificing” my 20s.  Would I become someone who worked so hard to achieve a goal, only to arrive and realize it wasn’t worth it? I hadn’t really been around many sick people, so I didn’t know how I would feel once confronted with actual illness. It’s one thing to read about difficult clinical decisions, it’s another to be in the room when it’s happening.

My degree lead to my first post-college job as a clinical ethics assistant in a Los Angeles hospital. Ethics consults are not generally called for cases with cases with easy solutions, and I encountered serious illness, death, and denial daily. I saw patients, their families, and their care teams on their worst days. Some days I felt my soul would be crushed by the weight of so much sadness and moral distress. I was wildly fortunate that my boss, an ethicist and retired surgeon, was an incredible mentor. He trained me as an ethicist, but I didn’t realize until later that he also gave me quite a few lessons in how to be a doctor. He was stoic, but still deeply compassionate. He guided me through the halls of suffering, picking out the areas where I could learn the most. I am not, by nature a stoic person, but I am gritty. I decided I could enter a profession full of tragedy and still face another day – maybe even be a better person for it.

Later, I moved on to a research ethics position in San Francisco, learning the complex rules of federal regulations and human subjects research. I had to think of populations of people being subjected to experimental medications, pokes, prods, and endless questionnaires. I learned to interpret the thoughts of a review committee, through the lens of the federal government, into obsessively detailed notes on how a researcher could actually start their project.

When I interviewed for medical school, my interviewers seemed relieved that the frequently used “ethics question” in the interview could be fun rather than sweat provoking. I found a medical school where I could also continue my study of bioethics. The further along I got in my training as a physician, the more valuable my ethics training became. When I entered my anesthesia residency, I wasn’t sure how I would ultimately combine my clinical work with my ethics training. At each step, I found mentors who helped move forward, and continue to imagine what was possible.

Mulling over tricky situations and looking for practical solutions is my idea of a good time. As an attending physician, my ability to analyze the ethical features of a situation has made me a valuable addition to my anesthesia group, as well as other healthcare providers. It’s deeply rewarding and I still can’t believe that I’ve been able to create this incredible career.