When My Time Comes

by Diane Rehm

  DR. S: My personal belief is that with the right stringent regulations of what has to happen and very specific outlines of what criteria you have to meet at the time, then yes, I believe aid in dying should be allowed to happen under that circumstance. That said, my personal belief means nothing. I don’t think society is in agreement yet. I don’t think states are ready to sanction that. I think we’re at the beginning of understanding aid in dying for people with a terminal illness who can speak for themselves. And I think that we will move slowly, because of necessity we have to on these issues.

  We get calls regularly from families of people with dementia who want to know what we can do. And somebody who is at the edge of sometimes being coherent and sometimes not, do we catch that person at the coherent times, and let that person say he or she would like aid in dying, and let that count? And if they’re coherent on the day of their death and can self-administer, have we complied with the law? Well, technically, yes, but I’m not comfortable doing it yet. Some people might say we’re moving down a slippery slope, toward abuse, and others might say we’re moving toward the fact that this is an appropriate way for people to want to die. This is a question of a patient’s autonomy in decision making, and I think that’s a good thing.

  Deborah Gatzek Kratter

  ATTORNEY AT LAW, A PATIENT OF DR. LONNY SHAVELSON’S

  DIANE: Debbie, tell me about yourself and your illness.

  DEBORAH KRATTER: I was diagnosed with pancreatic cancer in early 2017. I initially suspected it was something totally unrelated, waited a little too long to get my diagnosis. But when I did, I got a call from the doctor saying they had reviewed the CT scan and I have pancreatic cancer, and it looks like it’s spread. I immediately went on the Internet to find out what was going on, and was dismayed to see how bad the prognosis was. It’s usually four to six months.

  D: Tell me what you were doing at the time you got the diagnosis. Were you still practicing as an attorney?

  DK: I was. I was still a member of the bar association, although retired from my primary occupation. I was very active on the board of a public company, on the audit committee, head of nominating and corporate governance. I was on the board of directors of the homeowners’ association where I’m living now. And I was involved with some other charitable organizations. I was a pretty active person.

  D: When you received the diagnosis and began researching on your own and saw the prognosis, what were your first reactions?

  DK: My reaction was that I did not want to go through what it looked like I was going to go through. I have to preface that by saying that I had pretty much been an advocate for end-of-life options for a long time, having seen a couple of family members go through unpleasant situations. My thought was: What do I do to make this easier on myself?

  D: Did you talk with your own physicians about not wanting to have the end of your life be difficult?

  DK: Ultimately, I did. But the first thing I did was research, because I had remembered hearing that California had recently adopted the end-of-life option, so my first research was on how to get it. Then I spoke with my primary-care physician, who was pretty sympathetic. By that time I was involved in a university health-care system that specialized in oncology, and ran into more roadblocks.

  D: What kinds of roadblocks?

  DK: Initially, they did not seem to know how to make it happen, even though I went online, downloaded all the forms, and said, “Okay, here they are, I qualify, let’s do this.” And they really didn’t know how to handle it. They were surprised I was asking for it at that point and argued with me about asking for it. It took me a couple of months of kind of—I don’t want to say “nasty”—but unpleasant interactions. I was under a lot of stress in trying to make this happen.

  D: What were they saying to you?

  DK: They were like, “Why do you want to do this now? Why do you want to start this process? We don’t know how your treatment is going to work. There are all sorts of palliative treatments we can consider. You could go on hospice, you can be put on higher and higher doses of morphine.” I kept saying, “I want to be in control, and I want the comfort of knowing I’m in control.” I think they initially thought I was a suicidal person. So I made it clear that I’m not suicidal. I just want to continue to be me, to be the active person I am. And if I am a person in bed all day, that’s not me. But there was a certain amount of discomfort on their part.

  D: I gather you then set out to find a doctor who would help you. How did you find Dr. Lonny Shavelson?

  DK: I went on the Internet to check whether there were any doctors who specialized in the California end-of-life option, and thank God I found Lonny, the perfect person to help me through this. When we first met, we didn’t know that we would be here a year later. But it just made me feel so much more comfortable, going through the chemo and all of the stuff, knowing that if, at some point, I really can’t take this anymore, I have control. I have options.

  D: Can you tell me how many chemotherapy treatments you’ve had? This yearlong process has taken you into areas you had no idea you’d be in.

  DK: Yeah, I had heard of chemotherapy, never knew what it was. The first treatment I received was relatively gentle. It worked well for I think six cycles, which was once a week for three weeks and then off one week. It worked very well, but after six cycles, it stopped working. Then they put me on a second, much tougher regime, and I’m still on it. A cancer researcher I know calls it the “sledgehammer.” That requires me to be at an infusion center for six hours at a time, and then they hook me up to a portable pump, but that’s a joke because it’s a two-pound battery-operated pump that I have to wear for forty-eight hours. If you can imagine being tethered to something for forty-eight hours, so when you sleep, you have to subconsciously be aware of how you’re moving. I’ve gone through twelve cycles of that and it’s working well, and I have more cycles scheduled.

  D: What have been your physical reactions to this chemotherapy?

  DK: What I first noticed is a tingling in my hands. It makes me less adept at doing things like putting on a necklace. Earrings are almost impossible. Fortunately, I can still use my computer. The other weird thing is a neuropathy in my feet; it feels like I’m walking on sand. I keep thinking, Did I go on the beach and I didn’t know it?

  D: So you have to be very careful as you walk?

  DK: You bring up another point. All these chemo drugs are really bad on lots of parts of your body, including your bones. And since I’ve started on the chemo, I’ve had three bone fractures in my feet.

  The first time I asked whether this was related to the chemo, I got a shrug. And the second time, when it was in my right foot, which prevented me from driving, I asked again and got another shrug. So, I went back on the Internet and discovered there were studies that clearly showed this to be a well-known side effect and that it’s best to treat people for it. And I had not been treated. Even now, no one is offering to do something. I have to say, I can imagine that if I had a fracture in both feet at the same time, I would be calling Lonny. I can’t imagine that I would be in that situation when you know you can’t heal and then the next time you put your foot down and you want to take a little walk, you can’t. One of the important things about me is that I’m a very avid exerciser. Since I can’t exercise, I can’t hike, and I can’t take long walks, it really drives me crazy.

  D: So let’s bring in Dr. Lonny Shavelson, who is the person you found with joy because he gave you that control over your life.

  DK: My hero.

  D: Lonny, how unusual a patient is Debbie, having had a diagnosis of pancreatic cancer and having learned that the time she had left would likely be short?

  DR. SHAVELSON: I have to say that a prognosis is always taken with a grain of salt. It’s like looking at any actuarial table; you think you have the data to support it, and the
n, there are people who are going to exceed our expectations. I think in this case, the prognosis, in essence, was inaccurate. The first thought is that a person with pancreatic cancer that has spread will not survive more than four to six months. What some of the critics of the law say is that we aren’t good at making prognoses, and the fact is, it is a vague science. But that doesn’t necessarily harm us with the End of Life Option Act. (to Deborah) You knew you had the option. Were you harmed by living longer?

  DK: Not at all. I think having this option made me more open to trying treatment, even though I knew it might be very unpleasant. I’ll try this, I’ll try that, and see how it goes. And if I can’t take it, I have a place to go. It actually made me more open to alternatives, and able to live longer, by having the option available to me.

  D: Deborah, can you take us back to the first time you met Lonny?

  DK: Lonny came to the house and was so much the opposite of what I had experienced, open to and supportive of what I was going through, and he explained fully how the process would work. It was like the shutters being opened. It was wonderful.

  D: What did he explain to you about how the process would work?

  DK: How it would be at the end. Also, Lonny told me that not only would he be the prescriber, but he would be there at the time that I was actually ready to make the final decision. It’s not like I have the pills in my cupboard and if I have a bad day, I might just run upstairs and take them. I know I have to call Lonny and he will be there and probably ask me some questions about how long I’ve been feeling this way, and that if I say it’s been going on for a long time, Lonny will get here as fast as he’s able. Or he might say, “Let’s give it another couple of days, why don’t we, and see how you feel.” I feel really comfortable that he would be doing what he thinks is best. It’s not mechanical at all. There’s a lot of empathy.

  D: Have you called him?

  DK: No, in fact I’ve been at the far right end of the bell curve as far as doing well. And what’s been very, very nice is that Lonny and his office keep checking in with me to see how I’m doing.

  DR. S: One of our principles is that we continue to follow patients. We really want to know our patients, because we’re going to participate, at some point, in a very important day in their lives. But I have to ask you again, Deborah, because I’m still curious, was there any harm done in your receiving a less-than-six-months prognosis? You lived longer, and it’s wonderful to be here with you. Did we lose anything by starting the process sooner?

  DK: No, not a bit. I gained a much higher quality of life throughout the treatment. I gained the knowledge that I wasn’t afraid to undergo the treatment. It’s been 100 percent positive knowing that I have the option and that I can take chances, and if something doesn’t work, I’m not stuck with that choice. In fact, I would love to get some of the doctors to think outside the box a little more.

  DR. S: You know, the opposition to this law would say that by giving you this option so soon, there was a risk you might have taken it prematurely. Is there any truth that there was a risk of your making a mistake, taking the medication and dying, when you actually could have lived for a year?

  DK: You made it so clear that this was something that would be a very thoughtful process. I wanted this from the very beginning because I wanted to be in control. I wanted the comfort that comes with knowing I’m in control. So, no negatives whatsoever.

  D: When I walked into your lovely home today, one of the first things I set eyes on was the grandchild’s table you had set up right here in your family room and just outside your kitchen area. That made me wonder how your family and friends feel about your making that decision to be in control, to say at some point, to Lonny and to yourself and to your family and friends: Now is the time.

  DK: My family is uniformly supportive. Each one has slightly different concerns. My son, whose child gets the benefit of the room here, is concerned that my grandchild may have noticed something. There’ve been some questions about whether they will be here when it happens, and I’m not sure. Actually, I don’t think I want an audience. My daughter is very pragmatic and understands 100 percent. My husband’s attitude is more that he knows this is what I want to do, but doesn’t want to talk about it. And my friends, many of whom at my age still have elderly parents, have been completely supportive and said, “I would want to do the same thing.” And friends whose spouses have died have expressed the wish they could have had the option for their spouses.

  D: How does the fact that your husband says he understands but doesn’t want to talk about it make you feel?

  DK: It’s who my husband has been his whole life. He’s not an emotion sharer. It’s not a surprise, and it doesn’t really reflect on this situation.

  D: I’m concerned about the bones in your feet. If you couldn’t navigate on your own and would have to be, say, wheelchair-bound or even bedridden, would that be a deciding factor?

  DK: At this point, I think it might be. If both feet were broken at the same time, it would make me feel like what’s the point of continuing on with the chemotherapy, which is not a pleasant thing to go through. It would just make me think that to keep on doing this only so that I can stay in bed…that wouldn’t be who I am.

  D: And at that point would you turn to Lonny?

  DK: I may well.

  D: And, Lonny, how would you react?

  DR. S: We would have quite a long conversation.

  D: Tell me about that conversation.

  DR. S: I’m going to preface this by saying that if you and I would disagree about this, in the end the choice is still yours. But I might argue with you. I would say, “Let’s see if we can work around this disability.” Will using a wheelchair be as bad as you think it will be? Maybe not. What can we do that could help you while you still have some quality of life left, and let’s talk about what quality of life means. If it means being able to work, well, there are computers that can work in wheelchairs. If it means getting ramps for your house, well, then maybe we can get you outside, since you like being active. I would make some pretty strong arguments for finding some adaptive measures. But I’d then say that, if you think about this and you’re persistent and, in the end, this is what you want, and I’m convinced it’s not just your depression talking, I’m going to respect your wishes.

  D: Everything you talked about that could be done—all of that costs a great deal of money. What happens when an individual comes to you without resources?

  DR. S: The easiest example, the most common red line that people tell me they’ll never cross, and when they’ll be ready to die, is being in bed wearing diapers. I hear that a lot. And then the time comes, and they’re in bed, and they now need diapers. But after pooping in the bed without diapers for a couple of days, they’re so grateful to have those diapers. Then they live on for weeks with the diapers. They adjust. This is what we call the moving line in the sand. Diapers are not very expensive. Ramps and robotic exoskeletons are. Generally, we find ways to make people more comfortable as they die which are not expensive in the first place.

  But your point is well taken, which is that people with fewer resources don’t get as good medical care. That is sadly true at the end of life, as it is during life. I don’t know if we can solve that problem. We do the best that we possibly can. But wheelchairs are not that hard to get, ramps are really not that hard to get. I think hospice works very well if there is increased disability when someone is dying. The question is: What is that real line in the sand that patients won’t cross? That’s the time when they’re ready for aid in dying. And typically, we’ve crossed a number of lines in the sand along the way, and they have adjusted.

  D: Tell me how much it costs when an individual comes to you and asks for help.

  DR. S: Our practice strongly believes that nobody should be denied this because of lack of funds, so we have
a sliding scale that starts at the top and goes all the way to zero, which we apply not infrequently. There’s a flat fee of $2,600 for anybody who wants to avail themselves of our services, from the initial visit and on through the entire process, which sometimes lasts a year, and ends with my being there at the bedside. With some people, it’s one week. We see them one week and we help them die the next week. So it’s quite variable as to how long it takes, but there’s one fee for everyone, $2,600, and if people don’t have the funds, we’ll slide that down as low as is necessary.

  D: Dr. Shavelson, tell me how typical a patient Debbie is.

  DR. S: Totally atypical. Most of the patients we see when they’re very close to death, they’ve been in hospice, or we bring them into hospice right away because they are so close to death. I would guess we see most of our patients within four to ten weeks of the time they die, whether by aid in dying or by other processes. They’re quite ill. We’re the practice of last resort. They’ve usually tried their own doctors and been turned away. And they’ve tried their university care center or their oncologist and been turned away. When they find us, the first thing we ask is what care they’ve been getting, because we want to keep patients on the same regimen. When we take patients on, it’s often because they have not been able to find another doctor who’s been willing to work with them.

  D: Deborah, what happened when your own doctor found out you had turned to Lonny?

  DK: My primary-care physician was very supportive and happy that I’d found Lonny. The doctors at the university care system seemed a bit miffed that I was asking for this procedure at the point I was asking for it, and I still have a feeling that with one particular physician—it’s hard to say it’s a resentment, but there’s just surprise. “You see, you were wrong, because you’re still here.” That’s because he did not understand that my whole point was not that I wanted to die then; I just wanted the comfort of knowing that when I cross my red line, I get to cross it and I don’t have to wait for somebody else to say, “No, there’s a further red line that we want you to cross.”