Why I Wrote The Rx That Helped My Cancer Patient Die
On Tuesday, April 16, 2019, at 10.30 a.m. Mountain Standard Time, I successfully helped an 83-year-old woman with advanced lung cancer to die.
Although I had gone through the process for Colorado’s Medical Aid in Dying law, known as MAID, before, neither of my two prior patients had used the prescription. Indeed, I was surprised when I phoned the family of my first-ever requestee the week after the prescription was sent in and the patient herself answered the phone.
Wanda was a retired nurse in her late 60s, tough and straightforward, the matriarch of her large family.1 She was strong, both physically and mentally. She had tried chemotherapy, which had worked for a while, but when her lung cancer grew again and her options were only so-called salvage chemotherapies ― the drugs left in the cupboard that might work, but might not, all of which were associated with increasing side effects ― she told me she did not want to spend whatever time she had left chasing false hope. In fact, more than just managing her symptoms, Wanda wanted to take advantage of Colorado’s new law and actively end her life.
“I guess you didn’t take the pills then?” I said when she answered the phone.
“No. Not yet,” she replied. “I just like to have them sitting in the bathroom cabinet, to be honest. It makes me feel calmer. More … in control.” And she never used them, to my knowledge ― nature just took its own course a few months later, without any extra help.
My second requestee, Mike, a charismatic local businessman in his late 50s, was actively dying of his small cell lung cancer by the time the MAID process was through, and he was not conscious enough to be able to self-administer the cocktail of diazepam, digoxin, morphine and propranolol that had been prescribed.
The process is not unduly lengthy, given the need to ensure an irreversible decision is not undertaken lightly or inappropriately. An obligatory two-week cooling off period from the first request to a second confirmatory one is required, along with meeting a second doctor who helps ensure (to certify) that the patient has a medical condition with an expected prognosis of six months or less, is fully cognizant of the consequences of their decision and is not under any coercion. In Mike’s case, it was simply that his cancer had no respect for the time involved. Perhaps this wasn’t a failure of the process though, as the rapidity of his disease achieved the same end with no lengthy suffering.
Even though neither of my first two experiences with MAID ended up with anyone actually utilizing a lethal prescription, I lost sleep over both of them. Proposition 106, “Access to Medical Aid in Dying,” was passed in Colorado in 2016. And while six states and the District of Columbia now have some kind of MAID process available for residents, with two additional states set to join them in 2019, the principle behind it remains at odds with many doctors’ normal medical and personal values.2
To put this in context, I am a medical oncologist. I treat cancer, specifically lung cancer ― the most common serious cancer there is. I am proud of the achievements of the university program that I direct, where we have consistently pushed against the status quo, developing new treatments and new approaches to control this disease, and where our five-year survival rates for advanced lung cancer run up to four times the national average. As such, a process designed to actively end someone’s life ― to seem to be “giving in” instead of fighting for every good day ― was different and unsettling.
For Wanda, I only agreed to be the certifying doctor, but not the one who actually wrote the prescription. A local family practitioner, who was a prominent supporter of the new right-to-die legislation, took on the prescribing role for me. However, having gotten to know Mike as the driven, funny, kind man he was, and having been through the process already with Wanda, I felt my duty had evolved and, as Mike’s doctor, I wanted to stick with him to the end. I felt, in the face of a rapidly progressing, treatment-resistant cancer, his clear-minded intentions needed to be honored and my own discomfort had to be secondary. So, for Mike, for the first time, I agreed to take on the role of prescribing physician in the process, even though ultimately no aid in dying actually occurred.
And then, after my two dry runs, many months later, Bobbie, a tiny, talkative Italian American woman brought up MAID when her lung cancer progressed again, and this time everything was different.
Bobbie was 83, thin and energetic, a restless cartoon bird with deep-set eyes and gray, oversized Jackie Onassis hair. She always wore red ― a red sweater or a red blouse ― with lipstick matched to the same shade. She had retired to Colorado from Brooklyn with her husband 20 years previously, but her accent remained just as New York as the day she arrived. She wore the same heavy gold braid earrings that pulled at her earlobes, and a matching gold braid necklace worn on the outside of her sweater or blouse every time I saw her. She smiled and laughed frequently, anxiously, when she talked, showing the gun-metal outlines of extensive dental crowns and bridges.
Ten years previously, her husband had died unpleasantly and unrelentingly from pancreatic cancer, leaving her alone in Colorado and permanently coloring her view of the effectiveness and tolerability of cancer care. She had one son who remained in New York, who I never met and never spoke to. She came to all of her appointments alone.
When I first met her, she was adamant that she would do anything to treat her lung cancer, but no chemotherapy, no anti-cancer drugs. And so, for three years we worked outside of the box, exploiting our discoveries in controlling limited sites of advanced cancer with highly focused radiation therapy.
We had several honeymoon periods, when the scans would all look good and Bobbie would remind me, even if I did not bring it up, of her principled view on drug-based treatment of cancer. It did not matter if I explained that judging all chemotherapy by her husband’s 10-year-old experiences was like saying all antibiotics were the same, or all food was the same. She was having none of it. Her arguments, which circled around and around the horror of side effects and of delaying the inevitable based on her past experiences, were often protracted.
Sometimes she sounded as if she were asking for validation of her views, more than extolling them in their own right. She was not saying that no one should have these treatments, just that she did not want them. They did not fit into her vision of her life.
A lot of the breakthroughs in treating lung cancer, and many other cancers, in the last few years have come from developing personalized medical approaches ― conducting tests on a patient’s tumor to find out what its Achilles heel might be and then not giving every drug to everyone, but using this information to decide who will benefit the most from which therapy. Bobbie had been a heavy smoker in the past, which reduced her chances of finding a single dominant mutation in her cancer that we could act on with a targeted therapy. However, our tests showed that her chances of responding to immunotherapy were very high.
Immunotherapy is an outpatient treatment, administered intravenously every few weeks. It removes one mechanism by which some cancers can hide from our own immune systems. In the last five years, such drugs have dominated both medical headlines and direct-to-patient marketing campaigns. When they work, they work really well, sometimes controlling a patient’s cancer for years.
Although they only really work in about 20% of patients, Bobbie’s tests suggested her chances of benefit were closer to 70%. Importantly, the treatment would not have any of the side effects associated with chemotherapy her husband had experienced. So, when her cancer returned after the latest round of radiotherapy, and had spread to the lining of her belly, causing her pain and making her look pregnant despite her advanced age, I told her that the diffuse nature of this new progression meant local radiotherapy was no longer an option, but our tests offered her something different from chemotherapy. Something that might be very well tolerated. Something with a high chance of getting her cancer back under control, potentially for months or years.
Bobbie looked at me with a mixture of pity and sadness in her eyes.
“Oh, you know I don’t want the drugs, Doctor. I mean, come on. I’m 83, I’m on my own,” she said laughing nervously, awkwardly.
“Let’s talk about this assisted suicide thing. I mean, I’m not taking this lightly. I mean, it’s my life, you know. It’s the law now. Do I have to see a different doctor, or do you think you can help me?” she asked.
And with that, our last dance began.
I do not work in isolation. Some doctors do, or in virtual isolation because the team around them does not function as a team. However, our team comprised of nurses, physicians, clinical research coordinators, schedulers, a social worker, a dietitian and a nurse practitioner have practiced our combined medical choreography so much over the years that it now comes naturally. Therefore, when Bobbie invited me to help her end things that day, our team discussed this new development together and, as a team, we set a plan in place.
Joan, our social worker, had learned from our prior experiences and developed a summary step-by-step protocol that she shared. I made sure the exact wording required to document Bobbie’s first request was put into her notes so that the two-week cooling-off period could commence. I called Bobbie’s primary care physician who, with some explanation, agreed to function as the certifying doctor. Through email we shared with him Joan’s cheat sheet so he also knew exactly what to document, and Joan agreed to call Bobbie to let her know she needed to set up an appointment to see him and get this done. Ronni, our pharmacist, started researching the different forms of lethal prescription available.
Like everything else in America, there are options that come, perhaps not surprisingly, with different price tags. All MAID prescriptions are self-pay and only a limited number of pharmacies will fill them. When the Colorado law was first passed, we used to have to send patients to a pharmacy in Colorado Springs, some 50 miles away, to fill their prescription, but now our university system has developed the expertise internally.
The most expensive option (up to $5,000) involves the pharmacy opening 100 capsules of barbiturates, putting the powder in a container that the patient takes home and, when ready, adds warmed alcohol or water and then drinks the entirety of it down in three to five minutes. The reason it is so expensive is it puts you in a coma extremely quickly ― in something like 15 minutes (which is why you need to drink it all rapidly so you don’t pass out with only half the lethal amount consumed). Once in a comatose state, you die in your sleep between 12 hours and 100 hours later.
The cheapest option (about $50) involves just a huge dose of liquid morphine, but this is only really an option for those who are not already on opiates for pain control, which is pretty rare in the setting of an advanced cancer patient wishing to pursue MAID. If you use this approach, it might take two to four hours before a coma sets in. And, because morphine can make you feel very nauseated, careful consideration of using additional pre-medications should be given or you run the risk of your last conscious hours being very unpleasant. Once in a coma, the morphine-alone death process, like the barbiturate approach, can be protracted, with death taking some 12 to 24 hours on average.
Ronni and I discussed all the options, and the best compromise to us still seemed to be the combination of heart-stopping medications, painkillers and anti-anxiety drugs we had previously prescribed for Wanda and Mike. The pharmacy prepares the cocktail as a powder and gives the patient a separate container of liquid (essentially, alkalinized water) to take home to use when they are ready. Once the ingredients are mixed, you drink them down quickly, in one to two minutes. You fall into a coma within two to 30 minutes, and you die within 20 minutes to three hours, on average. All for $500.
Maybe it seems frivolous to talk about the cost, but what became clear across multiple subsequent conversations with Bobbie was that ending her life involved a very large amount of planning and organization on her part. She was absolutely right when she said she did not take the decision lightly. The minimum two-week cooling-off period quickly becoming irrelevant, the documentation was all done, but Bobbie wanted this to be a long, last conversation, one that we continued over nearly two months, across many clinic visits and phone calls.
During this time we also managed her symptoms with the help of our outpatient palliative care colleagues, symptom-control experts coming out to her apartment to keep her pain, nausea and bowel movements under control. When she picked up the prescription, she had met with the pharmacy’s MAID counselor, who went through the instructions for taking the medication. However, it was Joan who helped Bobbie understand how a life’s physical affairs are settled: how the relevant people are contacted and informed; how your body is picked up, when and by whom.
There were people coming into town Bobbie had to see. Her MAID choice was important, but it wasn’t to be rushed. There were hospices she wanted to interview. Many of them would not endorse MAID, wanted nothing to do with it. But at least one would. She did not want to be alone in the final act, and the best hospice offered a nurse who would sit with her during the time and sort out the phone call to the funeral home. As Bobbie narrowed down a day to end her life, she also began to deal with the reality of the event at the most minute and practical of levels.
Bobbie was not making a cry for help. She was not making a panicked decision based on a recent diagnosis of cancer. She was thinking this through ― had thought it all through, though thinking was not always the same as feeling right about something. Over the course of multiple conversations with Bobbie, it became clear that this was not just about the cancer. It was about being alone with cancer. It was about being alone, with symptoms, at the end. Part of being alone is having to do everything yourself.
After one particularly circular discussion with Bobbie in the middle of a busy clinic, I remember speaking to Joan and saying I did not know why she kept coming back to see me. “I’m not offering anything, we’re just talking through the same stuff,” I said.
“But that is what you are offering,” Joan said with a smile. “It’s what she needs when she has no one else to discuss these things with.” And Joan helped me to get it. Joan, the keeper of our team’s conscience, our mood-mother.
Bobbie eventually set the date for Tuesday, April 16, with the hospice nurse ready to be there for a 10.30 a.m. ingestion. In the week leading up to her planned event, I wondered what she would do for groceries. Bobbie was eminently practical. She had already gone through her possessions and allocated them in a list to friends and relatives in detail, taken others to Goodwill. It would not do to have a fridge full of unused produce that would just go to waste. Her son came in to visit that weekend, but left on Sunday afternoon. Perhaps they ordered out. Perhaps she had the bare essentials on hand and encouraged him to use the last of whatever she had.
We did not hear from her on Monday. What do you do on your last day on earth? I hope she felt the sun on her face. I hope she looked at old photographs, old sights and grew nostalgic. I hope she ate well, and left nothing behind.
On Tuesday I have a clinic, with all the energy, distraction and controlled chaos that involves. I knew it was Bobbie’s day, but I wasn’t watching the clock. Then, at 11 a.m., I got an email from the hospice letting me know that Bobbie had “passed on.”
It was so mundane, so ordinary. It was like letting me know that a flight had left as planned.
Later, Joan told me that at 2 p.m., after the funeral home had picked up her body to transport it to the State Anatomical Board, Bobbie had arranged for a removal company to pick up all her furniture and take it to her brother in New York. It would not surprise me if she had also arranged for her gas, electricity, water, cable and phone to be turned off at about the same time. Probably the bills for these services, estimated as much as one can, would have been paid in advance, too. A good tenant, closing out the lease on her life.
A few days later I received Bobbie’s death certificate to fill out. Per state policy, her cause of death was listed only as metastatic non-small cell lung cancer. MAID was not to be mentioned. In the future, we will certainly be able to track the MAID paperwork that is completed or the number of MAID prescriptions issued, but as already noted, even when the prescription is picked up it does not mean it will be used. In reality, we may never know what proportion of those who request MAID and who die will have ultimately used it.
Perhaps it does not matter. Perhaps the option of MAID will become viewed to be as much a part of the normal dying process as the option to use or not use painkillers or epidural anesthesia is already for an expectant mother during the birthing process. Perhaps, as with birth, we will get to the point where it is only the end result that people will remember and react to, and the fine details of how exactly any of us got there will be viewed as just that ― details.
But before then we will have to address both the fear of MAID being misused and the discomfort physicians, medical teams, friends and family members may experience when it is used ― even when it is used as the law intended.
Bobbie changed me. The discomfort she generated has not gone, but I have been able to push through it. Even though I had a treatment that was very likely to have reversed her cancer, she knew it was not a cure. Somehow at the end, as our conversations grew deeper, it even stopped being about her cancer or about symptoms. It just all came back to her being alone and having done all the things she wanted to do, having said all her goodbyes, addressed every loose thread as much as she was able, recognizing that she was not depressed, but she just did not want to have to go through everything all over again, not when she had found a way to leave her life guiltlessly tidy.
Together, we went through the utmost in terms of informed consent, the consent to-ing and fro-ing between us in both directions. I had known Bobbie for three years, but at the end I really knew Bobbie. I knew why she welcomed MAID on her terms, on her timeline. I do not know how a physician who has barely known a patient could be part of the process. But I also understand how, if the physicians who know a patient opt out from supporting MAID, the patient may be left with no choice but to find a proxy to go on a two-week speed date to death.
MAID is going to happen. And if it is to happen without misuse and mistrust, the physicians who know their patients the best should recognize the chances they give up to ensure that all other options have been talked through, to ensure the process is not abused and to really be there for their patients when they do not participate.
Bobbie, on behalf of your team, I want you to know how much you are missed, despite all the endless conversations in busy clinics. How much you were loved, for your laughter, your attention to detail and your style. And above all, how grateful we are for your courage in showing us if not the way for everyone, at least one way that was, in the end, the right way for you.
All patient names and potential identifying features have been changed.
As of May 2019, MAID laws are in place in California, Colorado, The District of Columbia, Hawaii, Oregon, Vermont and Washington. A MAID law is also set to become active in New Jersey in August, and another was just passed in Maryland in March.
D. Ross Camidge, M.D., Ph.D., is the director of thoracic oncology and the Joyce Zeff Chair in Lung Cancer Research at the University of Colorado Cancer Center.
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