End of Life Options Act
The End of Life Options Act is the State of California’s death with dignity legislation. It allows mentally competent adults with a terminal illness, such as metastatic breast cancer, to gain access to medications that help them choose the time and situation of their deaths. The website I’ve linked to above includes all the forms provided by the government, to help both patients and physicians make informed decisions and navigate the new legislation.
Today was an emotionally difficult, but important, day. It wasn’t about me – I don’t have metastatic breast cancer. As far we know, my cancer was treated. My friend, however, a 45-year old mother of two (her youngest being 10 years old) isn’t so lucky. She was diagnosed with metastatic breast cancer about 3 years ago, after an initial diagnosis of early stage breast cancer followed by a couple of years being cancer free, before recurrence. She has undergone several different chemotherapy regimes. She isn’t ready to die yet – but she knows that although she may be doing well today, things can change very quickly with her disease. She has seen at least one progression, where her cancer went from “no evidence of disease” to significant tumor growth in the span of weeks. So, she knows her body, and she knows a heck of a lot about what it means to both live and die with metastatic breast cancer. She is in no way uninformed.
As part of the End of Life Options Act, there are many checks-and-balances. The first is that upon the patient’s request, their primary physician (in her case a pretty awesome primary care doctor) explains the laws, but also that there are options in death. That there are multiple routes to end-of-life, including with significant support from palliative care and hospice care. After leaving the first appointment, with lots of information and handouts and such, the patient then needs to wait a minimum 15-days before requesting a follow up appointment. The documentation is not signed until the follow up appointment. At the second appointment, a non-relative is required to come and witness the paperwork. Actually, there are two witnesses in the current iteration – one who cannot be a relative or in any way benefit from the patients death and who is not a member of the physicians medical team/staff, and the other who is there as a second witness. The second witness can be from the physicians office.
Today, I was my friend’s witness. I watched as the doctor spent an entire hour listening to my friend – deeply listening. Hearing her concerns / questions about the legislation, and speaking to them. I watched as she saw beyond the question and prompted to learn what the real cause of concern was. The doctor was one of the most empathetic but also most talented primary care physicians I’ve ever seen. I was truly amazed at their knowledge of the process, but also with their knowledge of the patient experience – and how to help reduce anxiety and answer questions.
The physician explained both the process of the legislation, but also the process of the health organization for whom they work. The doctor explained that a second consulting physician will be needed, and that the second physician (in this case someone from palliative care) will explain all the options for end of life care. Something that this doctor has also discussed – and can support.
The physician explained the requirement as a terminal illness with a prognosis of less than 6-months. The challenge with prognosis with cancer is that many people live much longer than 6-months. My friend is not planning to die anytime soon, but she also knows that her situation could change at any point in time. If the chemo she is currently on stops working, and the next option doesn’t work either, she may not have a lot of time – and certainly not the time to figure out all the new legislation and how to jump through the different hoops on how to get it enacted – especially at a time when she will be wanting to spend her last months on earth with her family and friends – not managing multiple additional medical appointments. My friend also knows that if she stopped treatment (chemo) today, that it is highly likely that her cancer would consume her well before six months has passed. She is in no way naive about her body, nor is she unfamiliar with metastatic breast cancer progression.
One of the areas of concern for my friend was the 48-hour rule. In California, the medication must be used within 48-hours of being dispensed. This caused my friend great concern – worry about needing more than 48-hours to plan (she, like me, is a planner). The doctor emphasized that they would be available to support my friend – whenever the time got close. Also, that my friend could change her mind at any time – even after the medications have been prescribed and picked up. That it is totally her call, and that filling the prescription is not a requirement to take the prescription. The physician also explained that when we are nearing end of life, time slows down a lot. So, what may seem like a really short time (48-hours) when you are “healthy” and active, feels like a lot longer when you are close to end-of-life. That in the doctor’s experience, it does not feel rushed – but also, that if at the time my friend is feeling rushed, that she need not to worry. There is no magic 48-hour do or not clock – the physician is there to support the patient, and if a few more hours / days are needed, then they work through it. The reason for the 48-hour ‘time-limit’ is that the State does not want the medicine which hastens death to be ‘out there’ for any length of time. It needs to be closely controlled. It is not intended in any way to make the patient feel like they need to ‘use-it-or-loose-it’.
The appointment was tough. It was hard to hear my friend speak to her anxieties – to speak to her concerns, in a way that is very different than when we are talking. It is one thing to say it to a friend while walking in the woods, and a whole other to express it to your physician in the doctor’s office – it just is. It was especially hard to listen as my friend had to read aloud the declaration before she signed it, and before I could witness it.
It was an emotional day, but an important one … and one in which I am honoured to be the friend who was there to help. Hugs.