“To die: to sleep;
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to, ’tis a consummation
Devoutly to be wish’d.”
— Hamlet, Shakespeare
The California End of Life Options Act became effective in June. Before we can understand what the new law permits and how it might change the care of dying patients, we have to understand a little about end of life care prior to this development.
Suffering and dying is not a recent problem. Much has been thought and written about the alleviation of suffering and the medical care of dying patients. This is a well established topic in medical ethics that has been largely reflected in the relevant laws in many states.
So let’s imagine that we are quite ill, and that the pain and debility caused by our illness make us believe that death is preferable to our current state. Prior to the new law, what options were available to us?
One option is refusal of some medical care. This option is based on the general ethical principle of autonomy, which states that an informed patient who is able to make decisions may refuse any care, including life-saving care. So in our example, we may refuse life-saving antibiotics in the event of an overwhelming infection. We may choose not to be hospitalized the next time we are critically ill. We may decide ahead of time that if our breathing or heart were to stop, we would forego artificial respiration or CPR. This general approach allows patients to declare that they are unwilling to undergo some interventions even if these are necessary to prolong their lives.
In practical terms this is done through a conversation between a patient and her physician. These decisions can be formalized in various ways for communication with other doctors and other facilities. A standard way to document these decisions is the Physician Orders for Life-Sustaining Treatment (POLST) form. If you want to document your wishes about life-sustaining treatment, ask your doctor to sit down with you and complete a POLST form.
A second option in our hypothetical example is comfort or palliative care. In some circumstances this is also called hospice care. In comfort care, the emphasis of care is shifted to alleviating distressing symptoms, such as pain and shortness of breath. The ethical principle of beneficence states that physicians are mandated to attempt to alleviate their patients’ suffering. In fact, if the patient’s goal is alleviation of suffering and not prolongation of life, the physician may give medication that relieves the patient’s symptoms even if that medication hastens death. This is permissible because of the principle of double action. The principle of double action states that if an action (the giving of a medication) has two consequences, one of which is desirable (alleviation of pain) and the other one is not (the hastening of death), it may be permissible to take the action. The hastening of death is not taken to be the desired effect of the medication, but an unavoidable consequence of the necessity to treat the pain. Hospice care is therefore not considered assisted suicide or euthanasia, because the primary intent is always the reduction of suffering, not the ending of life. (Euthanasia therefore involves giving lethal drugs with the primary intention of ending life, regardless of whether the patient is currently suffering.)
So in our hypothetical example we could tell our doctor that we choose comfort care. Attempts to diagnose and treat our problems would then stop, and all focus would shift towards keeping us comfortable.
And that was the state of end of life care since I trained about twenty years ago until this June. Assisted suicide was illegal, as was suicide.
Bear with me for a brief digression about suicide. The reason suicide is illegal isn’t to punish suicidal people. The reason suicide is illegal is that the vast majority of people who attempt suicide have a treatable mental illness. After treatment they are usually happy that they were stopped from killing themselves. Suicide is against the law simply to provide a legal framework to stop mentally ill people from doing something irreversible that we suspect they won’t want to do once they are healthy.
I’m certainly not an expert in end of life care, but I do a lot of it. One of the first things primary care doctors learn is that all of our patients will die. So I’ve taken care of a lot of dying patients. The process doesn’t always work perfectly, and any human system will involve mistakes, but I have yet to see a patient whom I believed could not be kept comfortable through excellent hospice care. In my experience, patients who want to die are either depressed or have pain (or some other distressing symptoms like shortness of breath). These are treatable conditions. And we should remember that pain and shortness of breath can be treated with unlimited aggressiveness until either comfort or death is achieved.
Depression, of course, is a more difficult problem, but there are many treatments available for that as well, even for patients in whom medications are not effective. And in any case, patients with severe depression are generally not considered to be capable of making decisions about their death.
So to imagine a patient who might rationally require assisted suicide we have to imagine someone whose symptoms are well controlled (because if not, we can just give them more medication) yet still finds his current state intolerable and less preferable than death. I’ve never seen such a patient, but again, I’m not an expert. I can certainly state that such conditions are extremely rare.
In my training in medical ethics during medical school and residency, I was taught that assisted suicide was not ethical. First, there are myriad ways that it could be abused to prey on the poor (to minimize costs) and the powerless (to minimize hassles). Second, intentionally ending life is outside the goals of medicine. We’re supposed to cure or treat disease, restore function, and alleviate suffering. We’re not supposed to intentionally kill people. Whether or not the patient wants to die is irrelevant. Patients frequently demand things from us (habit forming medications, unindicated surgeries) that are against their interests, and we have an ethical duty to refuse.
So ever since I trained I have believed that assisted suicide was both unethical and also virtually never necessary.
Thanks for bearing with me so far. Let’s turn now to the California End of Life Options Act and understand what it allows.
The new law allows for specific circumstances under which a patient may request, receive, and ingest a drug intended to end his life. (The language in the law is rather Orwellian. The drug used to intentionally end the patient’s life is called an “aid-in-dying drug”. Did the word “poison” sound too unhealthy?) Patients who pursue this option must be residents of California who are 18 years or older, have a terminal incurable disease expected to result in death within six months, be able to make and communicate medical decisions, and be physically capable of swallowing the drug. (The specific identity of the drug is not mandated by the law.)
The patient must make three requests for the lethal drug to his attending physician. Two requests must be made orally at least 15 days apart. The other request must be made in writing on a specific form that is witnessed. The patient must then see a second physician who confirms the terminal diagnosis and that the patient is qualified to receive the lethal drug. The attending physician may then prescribe the lethal medication, after discussing with the patient how to store and administer the drug. Prior to receiving the prescription, the patient is given an opportunity to rescind his request and is encouraged to enroll in hospice. The patient agrees to ingest the drug in a private place with another person present. Participation in this option is completely voluntary for patients and physicians.
For the reasons I’ve already detailed, I believe that patients who will be able to take this new option will be extremely rare. Patients with only several months to live who have decision-making capacity (and maintain that capacity over 15 days) are rare enough. Add to that the requirement that the medication be self-administered, and the law is selecting for an extremely healthy dying person. I can imagine a rare patient with ALS or with a catastrophic malignancy meeting these criteria, but I suspect most of them will still opt for hospice care. And once their disease is advanced enough, they won’t be able to communicate their decision or swallow pills.
Time will tell how many patients pursue this option, and in what circumstances. Time will tell whether the many reasonable safeguards against abuse will operate as intended, or whether doctors cut corners and fudge the facts. Time will tell whether ethicists find legitimate medical principles to support this practice, or continue to argue against it, or shrug and yield to the new legal norm.
I’m willing to keep an open mind and learn from what happens next. I’ll be especially interested to read the arguments of doctors, ethicists, and religious leaders on this issue. But for the time being I believe that this is wrong. I’ll treat patients who ask about it with compassion and professionalism. I’ll point them to the information they want and to doctors who can help them. But when it comes to intentionally killing patients, you can count me out.
“But when you talk about destruction
Don’t you know that you can count me out”
— Revolution, The Beatles
Physician Orders for Life-Sustaining Treatment (POLST) form and instructions (Cedars-Sinai Health System)
CA Aid-in-Dying Law (Cedars Sinai-Health System)
Introduction to California End of Life Option Act (UCLA Health)