“Such a shame” people remarked about the deaths by suicide of Anthony Bourdain and Kate Spade, others said the same about the repeal of the End of Life Option Act (EoLOA), the law that governs physician-aided suicide/death in California.
Last month, I wrote about my ambivalence about the EoLOA in a personal essay about a client who desired, but did not carry out, a physician-assisted death in the Journal of the American Medical Association Internal Medicine.
The strength of my objections pale in comparison to those voiced by Dr. Ira Byock in Stat News a few months ago when he asserted that “When disease can no longer be kept at bay, modern medicine tends to give up altogether.” Nevertheless, I agree with a lot of his views. However, I also recognize that the End of Life Options Act will eventually become the law in California. When it is, I think we deserve an improved version.
The EoLOA was passed in 2015, and it went into effect June 2016. It’s had a bumpy road in the courts because of the ethically sensitive area it governs. For instance, it was almost immediately challenged by a group of physicians who opposed it. Still, it was surprising when a judge overturned EoLOA in May 2018 because the idea of physician-aided death enjoys popular support and organized advocacy.
The law is gaining acceptance among physicians in part because of the widespread support it receives in our society, but also because there is a clear line drawn between it and euthanasia. While euthanasia is an act carried out by a physician or other clinician, the physician is no where near the patient in the process governed by the End of Life Options Act.
Language in the EoLOA says that in order to participate in aid in dying legally, an individual must be able to self-administer the drugs. It specifies:
“Self-administer” means a qualified individual’s affirmative, conscious, and physical act of administering and ingesting the aid-in-dying drug to bring about his or her own death.
In other words, the physician and pharmacist are mere conduits to the means. For that reason, I think it is appropriate to call this particular statute physician-assisted suicide.
The lethal medications prescribed in California include: Seconal, a short-acting barbiturate which causes respiratory arrest in high doses, or a less expensive combination of drugs, DDMP, which cause cardiac arrest and respiratory arrest when taken together. These are not medications for symptoms; their sole purpose is to stop the breathing and the pulse as quickly and gently as possible.
The law as written now also leaves out those for whom suffering is so intense, they cannot attend to any task. For those poor patients, if hospice care is insufficient, palliative sedation can be offered to mitigate suffering. Medications involved in palliative sedation are similar to the ones used in hospice: opiates, benzodiazepines, antipsychotics, anti-nausea medicines and sometimes other psychoactive drugs like ketamine.
A key distinction is that palliative sedation is administered by a physician or advance practice provider, not the patient or their family member. Admittedly, the line between palliative sedation and euthanasia is a thin one because these medications will also hasten death in high enough doses. Importantly, palliative sedation and hospice medications are always given with the intent to relieve suffering and not to cause death.
To be sure, there are conditions whose last stages drag on and cause excessive suffering and indignity. I can imagine a few scenarios I would not want to endure myself. I can also imagine the desire to die quickly and peacefully rather than suffer or cause distress in the family. Finally, I understand that it’s important for people in those situations to feel in control, even if they never take the medicine, which is the case for almost half the people who get them.
While this law encourages people to use the prescriptions while they are still somewhat vital, one of the criticisms of it is that it requires a fifteen (15) day waiting period between the time of approval (after all of the criteria have been met) and the dispensing of the medication. Even though that may seem like a short time, it can feel very long to a dying patient. In fact, many willing and able patients become unable to participate in the EoLOA within that 15 day window. We should acknowledge that people who desire this option, may need help carrying it out, even if the help comes from someone other than a physician.
I can imagine a few scenarios I would not want to endure myself.
As of a year ago, it is estimated that 500 people had obtained a prescription to end their lives in California, but only 111 actually used it. Another sticky problem emerged too: since doctors and hospitals could opt out of participating in the law, some patients found it difficult to obtain the medicine.
Dr. Monique Schaulis, who is double boarded in Emergency Medicine and Palliative Care, became a prescriber of the EoLOA drugs within the Kaiser Permanente system. She feels it has had a positive impact on care for the dying because Kaiser’s system includes a robust team of social workers, nurses, mental health professionals, doctors and pharmacists.
“When you create a system to do the work well, it can provide a sense of peace, control, and empowerment to people facing death, whether they choose to use the EoLOA drugs or not. Just knowing the option exists mitigates suffering, and that feels like good work.” she said.
However, Dr. Schaulis also wrote about the inequities associated with access to the EoLOA. She points out that due to the high cost of the drugs, the lack of prescribing doctors in rural areas, and even safe housing options for some participants, the current system of physician-assisted death makes it an option only for the most privileged patients. This fact is validated by the data generated in places with a long history of medically-aided dying on the books.
She and I agree that it is likely that proponents of the EoLOA are likely to prevail, but the law may may look different when all is said and done. I asked Dr. Schaulis how the statute could be improved. Here are her recommendations:
- Disseminate best practices for systems, not just instructions for prescriptions.
- Collect data not just about who gets the prescriptions, but which drugs are used and which have the best efficacy, least failures and are the most affordable.
- Eliminate the mandatory 15-day waiting period. Our experience with the EoLOA showed us that a third of patients die while in that 15 day waiting period, which shows people wait until the end to ask for the medicine, and there’s little time to waste for them to take control of their own death.
A fourth point on which Drs. Schaulis, Byock and other physicians who take care of dying patients agree, is that more patients should access hospice and palliative care. Emphasizing end of life care by allowing for concurrent curative care during hospice would be a welcome advance in caring for seriously ill people. In other words, if the transition from aggressive curative treatment to comfort/palliative treatment were seamless, more people would feel supported throughout the course of their illness and may be less likely to want to end things themselves, as I wrote about in JAMA.
Today, numerous studies suggest the percentage of Medicare beneficiaries (FFS) accessing hospice is steady at 44% with an average stay of just 12 days. The numbers are even fewer for palliative care, which can already be accessed during curative treatment.
While I believe everyone should enjoy autonomy over their own body and has the right determine what happens to them during a terminal illness, I suspect there’s too much left unsaid in most discussions of physician-assisted death. Why aren’t more people accessing the services of hospice and palliative care sooner?
If the transition from aggressive curative treatment to comfort/palliative treatment were seamless, more people would feel supported throughout the course of their illness.
I’m glad that in some institutions, a consultation with palliative care or hospice is required before a lethal prescription can be dispensed because I think many patients will find what they need in palliative care — including pain control, psychological/spiritual support, and reassurance that they will not be abandoned when the end is nigh. In fact, Oregon’s data show that patients who are interested in medically assisted death spend significantly longer in hospice than the average dying patient.
Even if a patient doesn’t access palliative care, here’s what all clinicians should feel comfortable asking patients who seek lethal prescriptions during a terminal illness:
- Why do you want this option?
- What symptoms are bothering you most?
- What can we do to help you live better?
- Would usual hospice care meet your needs?
In addition, there is another set of questions we should be asking on the population health level:
- Who is accessing medically-assisted death/ suicide?
- Are any populations being left out? Are there populations who are over-using?
- How are health systems handling the statute and their responsibility to support both patient and physicians who wish to participate?
The experience of other states that have had this law on the books for a lot longer suggests that this option for patients is well-liked and not overused. However, that’s not to say things couldn’t change as our population ages.
Finally, we have to ask ourselves why these laws are important to us. Is it to maintain autonomy, or to achieve a better death? If it is the latter, we may need to concede that sometimes a dying person isn’t capable of carrying it out alone.
In June of 2018, a California appeals court temporarily reinstated EoLOA until a more definitive review of the law can be undertaken. Patients who have already begun the process of assisted death under EoLOA may continue, legally, if they choose. Still, it’s clear there will be more court battles ahead.
If having the law on the books pushes more people to the valuable services of palliative care, spiritual care and hospice, it will be a win. With regard to physician aided death, I hope as our understanding of the benefits and potential harms of this practice gets deeper, both the law and health care systems will improve to reflect that. Can’t we all agree that we can make medical care for the dying better much much better all around?
Learn More about Aid-in-Dying/Physician-Assisted Suicide:
- The text of EoLOA can be read online; it’s California Assembly Bill No. 15 (AB-15).