California, Oregon, Washington, Montana, Colorado, New Jersey, Vermont, and Hawai‘i have all passed legislation allowing physicians to prescribe lethal doses of medications to terminally ill patients who request them. A mental health assessment is often part of this process, placing the issue on therapists’ doorsteps and raising the question of how we respond when clients with terminal illnesses express a wish to end their own lives.
Tracey Bush has been there. A medical social worker, Bush is at the forefront of end-of-life issues in California, where she’s responsible for best practices concerning the End of Life Option Act at healthcare behemoth Kaiser Permanente. An expert on the controversy, logistics, and clinical issues surrounding this topic, she’s spoken extensively about the bioethics of what she prefers to call medical aid in dying.
Ryan Howes: How did you start working with end-of-life issues?
Tracey Bush: As a medical social worker, you deal with a lot of death and dying. In the beginning of my career, I worked primarily with pediatric AIDS patients, at a time when AIDS wasn’t as manageable as it is now. Years later, around the time that California passed the End of Life Option Act law, I started directing a clinical practice of medical social workers at Kaiser. The coordinators for that particular law are medical social workers, so Kaiser decided social workers would be the best people to assist patients who want to pursue this choice. It became part of my role to oversee that program.
RH: Terminology seems important here. Do we call this suicide, euthanasia, physician-assisted suicide?
Bush: Well, I think it depends on people’s political perspectives. The terminology I prefer to use is medical aid in dying. In the United States, it’s not physician-facilitated or assisted suicide, because physicians aren’t actually the ones proactively helping in the dying process. Their only role is to write the prescription; the patients themselves have to initiate taking the medication. Legally, it’s not suicide, although I understand some people might think otherwise, despite the fact that these are terminally ill patients who are going to die anyway, likely within six months. Because of the way the legislature has written the law, suicide is not written on the death certificate of these patients. The underlying illness is their official cause of death.
RH: A lot of people have trouble with the idea that patients are absolutely going to die of their illness, or whether they’re missing a chance at a last-minute cure.
Bush: One of the challenges in medicine is prognostication. You can’t walk into a physician’s office and say, “Look at my medical record and labs and tell me what date and time I’m going to die.” No one can make a prediction with that sort of specificity. But there’s a long process to ensure that a patient is terminally ill and has a six-month prognosis, and there’s nothing else we can offer them to extend their life.
RH: What is the mental health component to all of this?
Bush: It varies by state. In California, there’s a mental health assessment that can only be conducted by a licensed psychologist or a psychiatrist. But it’s mandatory only if one of the physicians—the attending physician or the consulting physician—has questions about the patient’s decision-making capacity. Hawai‘i, which recently passed a medical-aid-in-dying law, requires it, but their definition of mental health professionals is a bit broader. So, for example, licensed clinical social workers in Hawai‘i can do the mental health assessment. Regardless, assessors want to find out if patients understand the consequences of the decision, and understand the alternatives to it.
RH: What are your thoughts on the role depression can play in people’s decision to choose medical aid in dying?
Bush: As a mental health professional, I’m always concerned about that issue, but it’s tricky. Many terminally ill people have some depression: they aren’t looking forward to dying and leaving the families and lives that they love. So we have to find out: Are they experiencing an understandable sadness or a clinical depression? Is the depression informing the choice of pursuing medical aid in dying? If so, do you then refuse the patient the option of medical aid in dying, even though they’re dying, and try to treat the depression? Is there a benefit to that for a dying patient? I think that’s a decision a patient’s medical team has to make. Legally, the standard is whether or not the patient has decision-making capacity, and even patients who are depressed can still have the capacity to make sound and reasonable medical decisions.
RH: As a leader in this area, what’s Kaiser’s preferred stance on terminal cases?
Bush: We always take a neutral stance. We’re not advocates for medical aid in dying, and we’re not against it. We feel it’s up to the patients and their family. If they decide to pursue this legally available option, we’ll assist them as our patients.
RH: Let’s say a patient is dying of late-stage cancer. Is this something the person would have to ask for specifically, or does the physician usually offer it as an option?
Bush: Physicians normally shy away from offering this as an option unprompted. I don’t know that there’s anything necessarily precluding them for doing so, except that ethically they couldn’t offer it in lieu of an available medical treatment. My feeling is patients who are given a terminal diagnosis should always be offered a wide range of options: palliative care or hospice if they’re homebound, counseling and prebereavement services for the family, and help with coming to terms with the end of their lives. I’ve found patients who really fear having out-of-control pain or unmanageable symptoms are likelier to ask about medical aid in dying. They want to be in control at the end of their lives.
RH: What happens once a patient expresses interest in pursuing the medical-aid-in-dying option?
Bush: With our process, there’s a step between expressing interest and making a formal, spoken request of their attending physician. After patients initially bring it up, they get a psychosocial assessment by a licensed clinical social worker. It helps them look practically at the steps ahead, some of which are complicated legal decisions, and assess the emotional elements that might prevent them from completing the process. If they skip that step and go right to making the formal request, the physician refers them back for the psychosocial.
This assessment isn’t always mandatory in California. When it does become mandatory is when the physician is concerned that the patient’s decision-making capacity is in question: that’s when a licensed psychiatrist or psychologist steps in. But physicians still want a chance to look closely at the patient’s motivation, even when their decision-making capacity seems sound. Is there depression? Is there an underlying problem that can be treated in lieu of pursuing this? We also want to know if the patient has family or other caregiver support, since it’s very difficult to pursue this option on one’s own.
Often, patients don’t understand all the legal parameters, waiting periods, multiple medical assessments, potential mental health assessments, and involvement that will be required to complete the process successfully. Many are unaware of the emotional toll this decision could have on them and their loved ones, who will likely be assisting them not just emotionally, but physically through this process. Explaining the step-by-step process as well as assessing the patient’s and family’s motivations, strength, and capacity to cope is best undertaken by a mental health professional, in my opinion. Physicians don’t often have the time or skill to understand, assess, and intervene around these issues. As you can imagine, these conversations occur over several sessions with the patient as well as various members of their support network.
RH: How long does it usually take to be able to be given that lethal prescription?
Bush: Patients usually make the spoken request to the physician who’s already been treating their terminal illness. That physician determines whether they meet the criteria—they’re over 18, have a six-month prognosis, have decision-making capacity, and are a legal resident of the state. Then they’re referred to a consulting physician for an independent assessment. If that physician agrees they meet the criteria, there’s a second appointment with the attending physician, at which point they’re provided a simple form to make their request official. Only then can they receive the lethal prescription. It’s mandated that this entire process take a minimum of 15 days. With the three physician appointments and potential mental health assessment, it usually takes about 20 to 25 days.
RH: Is it then within the patient’s control when or whether they ultimately take the prescription?
Bush: Yes, and about a third of patients drop out at each successive step in this process. Their doctor might determine they’re not qualified, or the patients may change their mind. Some patients die during the process.
Fewer than 2,000 patients in California—a state of 40 million—have completed the process. It became legal in 2016, and 111 patients received prescriptions that year. In 2017, the first full year, that number was 577. Of those, 363 ingested the drugs and died. Those who receive the medication but don’t take it have security in knowing that there’s a way out if things get really bad and they don’t want their loved ones to have to care for them.
RH: Can you seek medical aid in dying for mental health issues, like treatment-resistant depression?
Bush: Not in the United States. But in some European countries, such as Belgium, that’s possible. Other countries also differ in who administers the medication. In Canada, for example, patients have a choice of ingesting it themselves or having the physician administer it. Most choose the latter.
RH: Obviously, there’s a lot of controversy around this issue. What does that look like from where you sit?
Bush: Various physician groups don’t endorse participation in medical-aid-in-dying programs. Surprisingly, those include palliative care and hospice physicians. They don’t want to equate that option with the end-of-life care they provide. The American Medical Association has continued to take a neutral stance: it certainly hasn’t endorsed it, and state medical associations haven’t wholeheartedly endorsed it either. Ultimately, physicians aren’t required to participate or assist their patients with it. In the case of a physician refusing to help, patients would have to find a different physician if they wanted to pursue it. Of course, there’s also quite a bit of controversy in various religious communities, and the choice can be difficult for patients or for family members who have strong objections.
RH: What are family members who’ve been involved saying about this process?
Bush: No matter what, it’s difficult to see a loved one dying. But they know that person better than we do, and they usually express gratitude that we can help fulfill their loved one’s wishes. Some families strongly agree with the decision, and others don’t want to be involved or think it’s a sin. But most recognize that above all, it’s something that their family member wants.
RH: What does the medication actually do?
Bush: It’s a combination of drugs normally used for sedation or pain control that in high doses depresses patients’ respiration until they stop breathing. It’s a fairly peaceful process: they usually fall asleep right away. But a full death isn’t always immediate: it could take minutes or hours, depending on how strong that individual’s heart or lungs are. For family members who’ve never been with someone who’s actively dying, the time between administration of the medicine and full death can be difficult.
RH: Has doing this work affected your view of life or death—or medicine?
Bush: On an emotional level, my wish is that no patient feels their end is going to be so uncomfortable that they need to pursue medical aid in dying, but that’s not realistic. So I always want patients to have choices. Still, death is sad. For us caregivers, it can be especially hard to accept that we can’t cure every illness and solve every problem.
RH: As this initiative continues to grow around the country, more therapists are likely to encounter it. What should they know about the process?
Bush: In our society, we don’t talk about death and dying much, so it’s important to be aware of the emotional impact on everyone involved. Even if you’re not working directly with the person who’s dying, you may see a client struggling with the fact that a loved one has chosen this path. Nonetheless, most people will say they want to die at home in a peaceful way, surrounded by their friends and family. So I think our job is to help people come to terms with that and make decisions based on their true values.
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