When My Time Comes

by Diane Rehm

  DR. S: No, I think that in medical schools today there is more information given about patient autonomy and information than there’s ever been. When it comes to this very difficult question of the right to die, the right to take aid-in-dying medications, I think that specific aspect of autonomy is not taught at all, not yet. It’s too new. What we see in California is that we have a new law now, almost two years old. Two years is a dot in the history of medicine. And medicine always moves at a glacial pace. It might seem we’re making all these new discoveries all the time, but when there are changes in medicine, they actually happen rather slowly, especially in the adoption of new practices. When it comes to aid in dying, there’s virtually no teaching about it yet. It’s simply too new.

  D: Even hospice does not yet accept the notion that they can help a patient die?

  DR. S: The fundamental principle of hospice is that we do not hasten or delay death. That’s their bible, their founding principle. In other words, they allow the so-called natural flow of death to happen, and they will be there to make you more comfortable and all that. We use morphine, we use everything else. But nonetheless, hospice will not interfere with the process of dying. When aid in dying comes along, that’s obviously an interference with the process of dying in the sense that you’re allowing a patient to take a medication at a certain time. Hospice care has traditionally been in conflict with this. People have been afraid of going into hospice because it’s viewed as the place you go to die. But hospice workers want to have a reputation of hospice as the place where you go to get help. If they accept aid in dying, it becomes the place where you go to die.

  The initial response of hospice to the aid-in-dying law was one of tremendous opposition. If our patients ask for this, we’re going to tell them, “Don’t worry about that, we can help you, you don’t need this.” But as time goes by, and as patient after patient after patient since the California law passed has been asking for aid in dying, starting with the nurses who get those requests and starting with the chaplains and social workers getting request after request from patients, the hospices have started realizing that if they want their patients to have autonomy, they have to start responding to these requests.

  I can tell you that in the Bay Area, roughly 60 percent of the hospices we work with now openly work with their patients with aid in dying. You need two physicians to okay an aid-in-dying request. Many of the hospices are now responding to that, and their doctors are becoming the consulting doctors. So what we’re seeing is that if you ask the National Hospice and Palliative Care Organization their position on aid in dying, you will hear the traditional no, they don’t want to talk about it, they don’t want to think about it. But if you look locally in my area, and at the hospices I work with, you’ll hear them saying, “Sure, who’s the next patient?” We’re seeing a massive change, very rapidly, in the attitude of hospice.

  D: What about the doctors themselves? To what extent are you seeing a growing number willing to participate with hospice if they have a patient who will die in six months and says, “Doctor, I’ve suffered enough”? How many doctors are willing to participate?

  DR. S: This is the access question. How do patients access the aid? They have a new right to under the law. They have the right to aid in dying. They have the right to hasten their death if they want to. But they need two doctors to help them. Let’s just say that access to medical care is unevenly distributed in all aspects throughout our state, in some places severely limited.

  D: And throughout the country. Rich people and poor people, insured people and uninsured people.

  DR. S: There is not even distribution of access to cardiac catheterization, to early mammograms, and there is the unequal access to aid in dying. That said, more doctors need to be trained. What we hear from many doctors who don’t want to do it is that they’re not comfortable with it. It’s not that they’re opposed, it’s that they’re uncomfortable because they don’t know medication dosages, they don’t know the protocols, they don’t know the paperwork, they don’t know how to bill it, because there are no billing codes yet.

  D: So what kind of instruction process is available?

  DR. S: There is no instruction process available. There are people like me and our practice, and we do hospital grand rounds and do as much as we possibly can, but there are only a few of us so far. I find that it’s improving over time. There are more doctors willing to participate now than there were two years ago. But access is still very difficult, especially in the more rural and poorer areas, and especially with uninsured patients, like everything else in medicine. Will it stay that way? I don’t think so. I think the teaching will start happening on a more formal level. We’re working on it. I think the word is getting around as there are more patient requests. When a doctor gets one request from a patient, that doctor can say no. But with the second or third request, the doctor is thinking, I better get more comfortable with this, my patients are asking for it.

  D: When a patient asks a doctor who says no, will that doctor then refer the patient to someone else who may be practiced and comfortable?

  DR. S: That depends on the doctor’s attitude. Some will work very hard to find someone else, and some will just tell the patient to go find someone yourself. Again, we are at an early stage, and time will tell how rapidly this is going to advance. I think it’s going to move fairly quickly.

  D: Isn’t Oregon a sufficient example for those of you in California?

  DR. S: Oregon is 10 percent of the population of California. They’ve been doing this for twenty years. They’re mostly a rural state. They are more focused on general practice and family practice than we are in this state. It’s very difficult to make Oregon to California comparisons. We picked up a lot from Oregon, their medication, Seconal, and we picked up some of their styles of practice. But now our medicines have changed, our styles of talking have changed.

  D: With changes at the grassroots level, before things get to the university level of teaching doctors how to speak with patients who are ready to die, it’s working its way up, instead of coming from the top down?

  DR. S: You’re so right that it’s grass roots. The demand and the need and the education are being driven by patients. Interestingly, it’s driven from patients to nurses first, because nurses are the ones working most closely with patients, especially in hospice. The real power is coming from patient requests. We’ve had in our small practice more than six hundred requests for help with aid in dying, not necessarily all valid, not necessarily that we accept them all, but six hundred people nonetheless.

  The best story I have about how this is grass-roots–driven comes from working with a patient when I first started doing this, a ninety-six-year-old woman whose heart was failing, who was in hospice. But that particular hospice did not approve of aid in dying. In fact, they referred the patient to me, and they told the hospice staff they could not be there on the day the patient died. So I went to the patient’s home on the day of her aid in dying. And at the home were the hospice nurse, social worker, and chaplain. And I said, “What are you guys doing here?” And they said, “We’re not about to abandon our patient.” So when I say that it was patient-driven, this is exactly what I mean.

  D: What a wonderful story! Now, did that patient meet all the criteria of the California law? Had two doctors determined that she would be dead within six months? How could they know?

  DR. S: Everybody acknowledges that the ability to make an accurate six-month prognosis is pretty lacking. We have a hard time zeroing in on that. And I’ll tell you why it’s not really as relevant as everybody thinks. It’s not like you come to me and I tell you, “You know what? You have breast cancer, and you have less than six months to live,” and you decide right then to take aid-in-dying medications. What happens is that you wait to see how sick you get. We don’t see people newly diagnosed who ask for aid in dying, and we don�
��t see people newly prognosed who ask for aid in dying. They get sick, they watch what’s happening, and by the time they’re asking for aid in dying, their prognosis is really evident. They’re close to death. If I’m not sure of a prognosis, I tell the patient very directly.

  D: So, do you believe the six-month prognosis is one of the difficulties with the California law?

  DR. S: No. Given the fact that it’s difficult to make a six-month prognosis, I don’t think that really changes how well we function with this law, nor does that mean it’s a good or bad law. I think it’s important that we have some parameter to determine who qualifies and who doesn’t, so that we distinguish—and this is very important—aid in dying from suicide. Aid in dying is for people who don’t have the choice to live. This is why it’s not suicide. People who are going to commit suicide have the choice to live and choose to end their lives. People who are doing aid in dying don’t have the choice to live. They’re choosing the way they will die. That’s why we don’t use the term physician-assisted suicide anymore. That’s why the law says we can’t write suicide on the death certificate even if we wanted to, because this is not suicide.

  D: Let me ask you about the fifteen-day waiting period for patients after they’ve been given that six-month prognosis. That fifteen days might feel like an eternity to a patient who is ready to end it all.

  DR. S: The fifteen-day waiting period is probably the most ill thought out and onerous part of this law. It is completely incorrect, for a variety of reasons. I think it was initiated to make sure that nobody is making a hasty decision. It starts, by the way, on the patient’s first spoken request to the attending physician for the End of Life Option Act. And then we have a fifteen-day waiting period in which we can’t help a patient at all. It assumes patients haven’t had forethought before those fifteen days; as if they haven’t done a huge amount of contemplating as their illness has progressed. I haven’t met a patient who hasn’t thought about this for a long time before he or she comes to me with the first request. And many of these patients die during the fifteen-day waiting period, in exactly the way they don’t want to. I’ve seen many patients die during the waiting period, and this is consistent with all the Oregon data over twenty years. About one-third of our patients have died during the fifteen-day waiting period. This is a badly written piece of the legislation. I think this requirement needs to go.

  D: Tell me about your experience when an individual has gone through the entire process, and how you as the medical doctor are with that patient at the end.

  DR. S: Our practice has a fundamental belief that this is the most difficult experience for patients in their lifetimes and for their families. It’s complex. Death is complex and death is important. We don’t tell the patient, “Here’s the prescription, take it when you’re ready.” We stay involved as much as possible, because when the patient is ready is not always clear. And we want to be there and have this complex conversation about whether to take the medication. Maybe they’re just having a good death anyway, and they don’t need it. We help them with that decision as well. But if they decide to take the aid-in-dying medication, the question is when? Do I wait another week? Do I take it now because I may get sicker? Do I wait until my family visits? All of these things are part of the discussion.

  And then, the day a patient takes the medication is an anxiety-ridden day, a very, very difficult day for a family. Commonly, they’re left alone without any professional help for this. We don’t believe in that. As part of our practice, we’re there at the bedside on the day. We’re there to talk with the family, make sure that everybody’s okay, explain to them what the process is. This is a medical procedure, and we don’t want people to be left alone with it.

  We stay to help administer the medications. We don’t give the medications. The law says the patient has to self-administer, so certainly the patient will ingest the medications. But there’s preparation involved.

  We also watch the patient and describe to him or her what will happen. The whole family needs to know what they’ll be seeing. What will Mom or Dad look like as they become unconscious? How long will it take to become unconscious? Will they be suffering after they’re asleep? Can they still hear? What is their heart doing now? It seems they’ve been unconscious for twenty minutes and their heart is still going—why is that?

  We know these deaths can take anywhere from ten minutes to ten hours. There are some reports we’ve had from Oregon of three to four days. So you don’t leave a family alone with that. That’s not good medicine. A trained person has to be there at the bedside. In the future, I would love for it to be a hospice nurse. We don’t think that families should be alone when they do this.

  D: That’s very comforting to know. Please talk about the problems with Seconal.

  DR. S: Got another two hours? Seconal has been the medicine that’s traditionally been used in Oregon. It’s a barbiturate; it puts people to sleep, deeply enough that they usually stop breathing, so that you’re suppressing the brain, which drives respiration to a significant enough extent that breathing stops. Seconal is a very, very good drug. But it’s not necessarily reliable. When you read the Oregon data, you see that there have been ten-minute deaths and that the median death lasts about two hours. That all looks great until you look at the extremes and you hear about the four-day deaths. Which means that Seconal does not reliably suppress respiration. One of the advantages of having a new state and a bigger state than Oregon take another look at this is to review the use of Seconal. We did not want to accept a medication that is not consistent enough for our needs, let alone the fact that its price has gone up to $3,500 a dose. And it’s not covered by insurance. So, we have a price issue and a quality issue.

  D: And forgive me for bringing up such a mundane factor, but isn’t there also a taste issue?

  DR. S: Every one of the aid-in-dying medications, because we use such high dosages, has a taste issue. They’re all equally unpalatable.

  D: What about the European model? Can you comment on that? I read a while back about the 104-year-old man who lived in Australia and had to fly to Switzerland because he wanted aid in dying. Tell me what you know about what happens in Switzerland and whether you think that approach to medical aid in dying is something you as a physician might aspire to.

  DR. S: We don’t have to go as far as Switzerland; we can just travel across the border to Canada to see a better model than ours. In California, and in every state that’s passed a law, we are restricted to medicines taken by mouth. And the intention of that, trying to be gracious to the legislators, has been that it is a final consent. You put that medicine in your hand, you swallow it, that is guaranteeing to the degree you can that the patient has consented to the medication. That, to me, is about as rational as saying, “We have your permission to take out your appendix, thank you for your permission, here’s a scalpel, please do it.” We don’t need that final consent in medicine.

  Let me focus on the issue of swallowing medications. The legislature, in an attempt at wisdom, was saying they want to know that there’s a final consent from the patient at that moment; that no one is being coerced or forced to do this, or we haven’t slipped into so-called euthanasia. So we ask patients to drink the medicine, showing their final consent.

  I can’t begin to tell you how many problems that brings on. Number one: when patients are really, really ill, so are their guts, their intestines. They don’t absorb medications very well. When you see frail old patients dying of cancer, and they’ve wasted away, so have their intestines, and so the oral route doesn’t work for them. Second, we have issues with how much medicine they can take. Then we have issues with some patients, such as ALS patients, who don’t have the strength to take the medication. And I as a doctor have to tell you how silly and uncomfortable I feel sitting at a patient’s bedside, knowing I have a complex medical procedure to stop someone’s heart
, and that all I’m allowed to do is provide liquid medications to swallow, when I have a nice IV nearby and he or she can sign a consent form at that moment and let me do it the right way.

  The right way would be the most successful way. For some patients, it might be the oral route. For some patients, it could be via feeding tube. For some it would be intravenously. For some patients, it might even be by rectal administration. But the point is, I can look at a patient and say, “You are this weak and about to lose your ability to swallow. You’re not going to be able to do it in two days.” Therefore, because of the legislation, patients are going to die a week before they wanted to, because otherwise they’re going to lose their ability to swallow.

  I think if the legislature is insistent on the oral route as the final permission, let’s go along and fulfill every part of the law with the oral route, and the patient swallows the medications. But if the patient’s heart has not stopped four hours later, and the family is waiting and wondering what’s happening, I would like to have the right to do what I can do as a doctor, which is to start an intravenous line and give IV medications to end the patient’s life. I consider any death longer than five hours to be a failure of aid in dying because that’s torture for the family to wait that long. What I would like is for the legislature to understand that, by mandating the oral route, they’ve created either failed aid in dying or very long aid in dying.

  D: I have finally a very difficult issue to take up with you. I, at eighty-one years old, have decided and told my family that should I move toward Alzheimer’s and if I am no longer of use to society, when I can no longer care for myself, when I can no longer relate to those around me, I wish to end my life. Do you believe that is a legitimate request to make, and one that would eventually be accepted in the law?