When My Time Comes

by Diane Rehm

  After a series of meetings with doctors at Sibley Hospital, Washington Hospital Center, and George Washington University Medical Center, Mary was referred to a doctor who’d been using herbal treatments for cancer, including medical marijuana. This doctor told her that if another doctor would take the lead, he would be willing to work with her. So, after a four-year journey, Mary finally knew she could access the medication. She would be able to choose how she died, and she would be able to die at home.

  Mary and Stella met with the second doctor soon afterward and really liked her. She was well informed about the legislation in D.C., having educated herself about it, and knew doctors in Vermont and Oregon. She told them that she’d never done this before, but if they were willing to go on the journey with her, she would be willing to go on it with them. She was the first person, said Stella, who connected with them as a caring physician and a human being.

  The next step was for the doctor and Mary to register. Several friends signed forms to say that Mary was doing this voluntarily and that she was of sound mind. The next challenge was to find a pharmacy. Fortunately, the doctor had worked for many years with AIDS patients and knew the pharmacists who could provide the drugs. The doctor gave Mary the prescription for the medication (which costs thousands of dollars). She got the prescription at the beginning of May, and by the beginning of July, the cancer had advanced considerably. She became increasingly tired and was experiencing more and more pain.

  I asked Stella how Mary felt about palliative sedation.

  S: Mary saw it as part of a continuum of care. She was enrolled in hospice and very pleased with the care she received. She didn’t want to be in a coma at the end of her life. She wanted to be present, she wanted to be with me and the dogs. She wanted to be able to say goodbye. On her last day, she was having increasing difficulty controlling the pain. The doctor came in the evening, and she said to Mary, “I can give you medication so you’re not in pain.” Mary said she was already sleeping too much, because by then she was on a fentanyl patch and hydromorphine. She said to the doctor, “If you give me something, I’m just going to sleep, aren’t I, I’m going to be unconscious.” The doctor said yes. And Mary said, “No. I don’t want that. That’s not how I want to leave this world.”

  Mary had a draining tube inserted into her abdomen to take the fluid out because her abdomen had become very swollen. It was like she was pregnant. It had worked for two or three weeks but had stopped working. We went into the hospital to have it checked, and they did a scan, thinking there was just some blockage and that they’d put in another tube. But the doctor came out and said, “There’s no fluid.” I looked at him and said, “You mean it’s a tumor,” and he said, “It’s all tumor now, pressing on other organs.” When that happened, we knew she had very little time, that there was very little left to do. Mary said, “I think you should call everyone and tell them to come.”

  D: Did you know that it was going to be the end?

  S: No. I still thought she had several weeks. We had friends over and her son, and lots of people came by to visit. That was on a Thursday. On Sunday she got up early and then went back to bed. That was the last time she came downstairs. My sister and brother flew in from France and England, so she got to visit with them for a short time, and she was laughing and joking. It was really rather lovely. By then, we were both pretty tired and went to bed. She needed more pain medication, so I helped her use the bathroom and take pain meds. We got a little bit more sleep and then she woke up again, and I thought she just needed more medication. But then she said, “You know, Stella, it’s time.”

  D: Where was the medication kept?

  S: When Mary had got it, she put it in a cabinet in her workroom—her studio. I didn’t want anything to do with it. I didn’t want to look at it. I didn’t want to know where it was. But that evening, I must have sensed the time was very near. And I asked if we could look at the medication together. The medication is an antinausea pill, initially. Then you wait an hour for it to take effect. Then there are pills, which, fortunately, the pharmacy had provided in powder form, so all she needed to do was to mix it with water and drink it. And it was instant. She lay back down and went into a very deep sleep. It was instant.

  D: And you were right there with her?

  S: She died in my arms. It was about two and a half hours before she passed away. It’s what she wanted. It’s exactly what she fought so very, very hard for. And it was very peaceful, very calm. I was very peaceful, at peace with it. It’s harder now. But she had integrity. That’s the person Mary was.

  D: How are you taking care of yourself, now that Mary is gone?

  S: That’s the real question. I think of myself as a single mom now. It’s a journey, isn’t it? The first couple of months, you’re a bit numb. And I clearly don’t have a problem crying, so I think that’s healthy. All through her sickness and all through this journey of trying to find a way for her to die peacefully, we did two things. One, we were grateful for a wonderful life, for many adventures, for allowing each other to live to the fullest, jointly and together. We focused on the fact that we had more time, and we took it day by day and enjoyed each day. We didn’t think we’d have four years. You usually only live about two years with this type of cancer. Four years was a real gift. And it enabled Mary to do her campaigning. I honestly believe that she was instrumental in the passage of the legislation here in D.C. She was the one person involved for whom this was real. She had the disease and was willing to talk publicly. Mary is an extremely private person. It’s not like her to speak publicly at all. She would prepare carefully and would get very nervous. It was exhausting for her, particularly as the disease progressed. But she felt it was so important that she talk about it.

  D: Are you considering continuing her work in this area?

  S: I’ve talked to The Washington Post, which is doing a story about her. I’ve offered to talk to partners or spouses who go through it. Because it is something to be there when someone dies. And yes, I will speak out and I will continue to do whatever is necessary if Congress tries again to overturn it. I will be back up there lobbying again. Because if they overturn it in the District of Columbia, that sets a precedent for the whole country.

  D: How would you define a “good death”?

  S: It’s a peaceful death. It’s a loving death, and to be able to live to the fullest and live to the very end, to be able to live each moment. As to the reluctance of talking about death, I think there’s a disjunction for so many people who say to me, “Well, if I’m really sick, I want to be able to just take a pill and die.” It’s not as easy as that. And especially right now, when medical aid in dying is not widely accessible. Death is part of living and it’s a difficult journey, but the more we make it a part of our lives, the more joyful a journey it is.

  Dr. Katalin Roth

  PROFESSOR OF MEDICINE, GEORGE WASHINGTON UNIVERSITY, AND MARY KLEIN’S END-OF-LIFE CARE DOCTOR

  My visit with Dr. Katalin Roth took place in her home in suburban Maryland, where she lives with her husband. She is an extremely busy physician in her late sixties. At the time of the interview, Dr. Roth was the only physician in the District of Columbia to come forward to help an individual wishing to exercise the right to die. Mary Klein was her patient.

  I began by asking Dr. Roth why physicians are so reluctant to help patients with medical aid in dying.

  DR. ROTH: I do think there is support in the medical community for this. But it’s hard to break with tradition. I’m not sure I’m the only person who’s been willing to do it. I know I have some support from colleagues.

  DIANE: What is it going to take for other doctors to come forward and be willing to say, “I, too, will be willing to follow in Dr. Roth’s footsteps”?

  DR. R: I think for younger doctors, there’s been some normalization of physician aid in dying. We have more than twenty ye
ars of experience in Oregon and maybe ten to fifteen years in the state of Washington. I think the acceptance is increasing. But people also worry about their employers, whether their institution will stand by them. Those issues have not been well addressed. It requires a lot of commitment from the physician to make that last journey with the patient, and many people hesitate before undertaking that.

  I reminded her that there had been some sort of registry and that doctors had to go through a certain amount of training here in the District of Columbia. I asked whether doctors were unwilling to have their names publicly revealed.

  DR. R: Well, I was hesitant as well. That registry has been removed. There is a registry like that in the state of Oregon. And possibly in the state of Washington. I think that it’s now well accepted in those states. The D.C. law is extremely private. It assures the physician and the patient a lot of confidentiality. But that’s at a cost. It means that a person who’s seeking a doctor who could provide help may not know how to access one.

  D: What could make that process easier?

  DR. R: I’m not actually sure how I feel about it. I think having a registry with the Department of Health that would be fairly confidential and where people could make serious inquiries would possibly be enough to preserve the privacy of the physician. As you know, my name was mentioned in an article (about Mary Klein) in The Washington Post. I wondered whether that would generate any kind of negative response. And actually, it has not. I’m reassured by that, and I’ve told people that I would be willing to help other physicians who are trying to work with their patients. I didn’t really know very much about what I was undertaking, and I looked to mentors. I think it’s part of the process for physicians to mentor one another.

  D: Tell me how you met Mary Klein.

  DR. R: Mary Klein was interested in medical marijuana and asked her primary-care doctor about a marijuana prescription. It’s legal in the District of Columbia. Her doctor referred her to a colleague of mine who prescribes medical marijuana. I also prescribe it, but my colleague knew that I might help her with medical aid in dying. He was willing to be the second certifying physician, but he wasn’t ready to come forward and start the process.

  D: Had you felt this way since the D.C. law went into effect?

  DR. R: Actually, I’ve supported medical aid in dying for a long time. A lot of people who support it spent a lot of time with dying patients during the AIDS epidemic, when people were facing terrible deaths and it was very hard to help them. So it was something that was much discussed at the time. I also teach medical ethics to medical students and staff, and have been interested in the issue for a long time.

  D: How did the discussion begin between you and Mary Klein?

  DR. R: She told me very straightforwardly that she supported medical aid in dying and that she knew she had a terrible illness. She had metastatic ovarian cancer and was looking for a physician to help her.

  D: Did she ask you directly if you would help?

  DR. R: She did. And I said I would do my best. She told me about her medical history, and it’s a pretty terrible disease. I work with cancer patients all the time as a palliative physician. Her cancer was very advanced at the time. She’d gone through many cycles of chemotherapy and surgery. I actually know her gynecological oncologist, and I know that he’s very capable and that she had all the treatments available. I was already very interested in the law and had spoken about it at various educational conferences. And our division at George Washington also discussed how we felt about it.

  D: Did you find a fair amount of agreement among the physicians with whom you spoke, or was there a lot of pushback?

  DR. R: Working with geriatric people in hospice and palliative medicine, I’ve seen that there’s a lot of genuine disagreement. There’s respect on both sides, but some people just don’t feel it’s an appropriate thing for a doctor to do. There’s a prohibition against hastening death, and western medicine has been opposed to it since the time of Hippocrates. In our era, that’s been a real cornerstone to our medical education. I don’t think doctors can just edit that stuff out.

  D: Even in a case of extreme pain?

  DR. R: In the palliative world, we have a lot of experience with physicians being very reluctant to adequately treat pain because they worry about hastening death. A little bit or a moderate amount of morphine might cause breathing depression or might cause the person to drift into unconsciousness, and as I say, many doctors are very opposed to that. In palliative medicine, we’ve had to push back against the prejudice that doing anything to relieve pain might actually hasten death.

  There’s something called the doctrine of double effect. The idea behind it is that if the purpose of the physician is to prescribe pain medication in order to relieve pain, if it has an exaggerated effect or an unanticipated effect of hastening death, the doctor’s not blamed because the intention was simply to relieve pain, not to shorten the person’s life. But this is a tension that many physicians struggle with all the time.

  D: In the last thirty years, some of the balance of power between patient and doctor has shifted. And we as patients have said we have a right to ask for and state very clearly what we want. Doctors are no longer gods on pedestals. I think the Oregon law came out of the idea that patients should have a right to say, “I’m done! I really have had all I can take.” So, when someone is using medication for palliative means, and a patient or a family member says it’s really not helping, whose decision should it be?

  DR. R: You’re preaching to the converted. I’ve been an advocate of patient autonomy in decision making for my whole career. And I’m sure that that affects my view on physician-assisted dying. When the choices are bad and there is no hope of cure or recovery or remission, I think patients ought to be able to make that decision, to stop treatment that’s not helping, to refuse more chemotherapy that causes more suffering than benefit, and to favor comfort and pain relief over prolonged suffering.

  I believe physician-assisted dying is part of a continuum. In the hospice palliative-care field, there’s a strong belief that good palliative medicine can almost always relieve suffering adequately. But we’ve all had a lot of experience that it’s not 100 percent successful.

  Some people have more pain than other people with the same condition. And some people prefer to remain in control for the time they have. There is an option of knocking a person out, what we call “palliative sedation,” or giving enough medication—tranquilizers and pain medicines—so that a person sleeps for the rest of his or her few remaining hours or days. Some people prefer that. Some people say, “I don’t want this suffering anymore, just let me sleep.” And that does not mean we hasten death; we just give them more medication so that they’re not conscious.

  I offered that to Mary at the very end. I said, “I could give you enough medicine so that you would just sleep for the rest of the time you have.” And she said, “I don’t want that. I want to be in control of when I go.” In physician-assisted dying, there are some people who prefer to have that control.

  I asked Dr. Roth about the medications, and exactly what is prescribed.

  D: Are there differences between what’s prescribed in Oregon, California, and D.C., or is it all the same?

  DR. R: I’m no expert. I requested advice from a doctor in Washington State when I wrote my first prescription, and Compassion & Choices has a doctors’ hotline. They were very helpful. I wrote the first prescription in April 2018, and then wrote two more prescriptions for two other people, one of whom used it, and the other chose not to. It depends on availability of medication, it depends on insurance. Not every insurance company will pay the cost of the medication, and not everybody has the means to pay for it out of pocket. Secobarbital is expensive, more than $2,000, and even higher on the West Coast. There are other medications that are available, other combinations that
people use. But it’s very onerous to swallow all the pills. It’s a lot of pills. It’s not really very easy to make death happen with medication that’s ingested. It’s hard. And when people are very sick it’s really hard. Mary had a bad stomach. She was no longer able to eat. And she had a bowel obstruction from the cancer all over her abdomen. I say that because it’s not an easy thing to take a hundred pills or even drink a glass of water.

  D: Did you visit Mary on the day she died?

  DR. R: Yes, I did. I visited her four days before she died and then again on the day she died. I think it’s important for you to know that I often visit patients at home. And not only people who are contemplating physician-assisted dying, but when people are very ill or homebound and can’t come to us.

  D: She must have been comforted by your presence.

  DR. R: Well, we visit people at home, in hospice, in geriatrics. I’d like to put in a little plug about house calls. I think they’re important. People are at home, and they need to be visited where they are. Mary was a terrific person, a very impressive, admirable person.

  D: Were you there with her when she died?

  DR. R: No, I was not. Her wife, Stella, was there. When I visited her the last time, I did go over the medications with Stella. That was actually the first time I had seen what the pharmacist had dispensed. Mary was waiting for her family to arrive from Europe. She had a very clear idea of whom she wanted to see. But she was very, very ill when I saw her the last day. Although the timing of her death was chosen by her, by her and Stella, she was very close to death that last day. When people are dying, their blood pressure goes down, sometimes their circulation is poor to their feet and their hands, their skin mottles. There are all sorts of signs of dying. And Mary was dying that last time I saw her. She died from ovarian cancer. She did not die from the potion that she drank. That just affected the time she died, but she was already dying.