Compassion & Choices (C&C) joined Donna and Maureen in June of 2024 to talk about what they learned from John’s end-of-life journey and from their careers as healthcare professionals.
Donna: I have been in healthcare for over 35 years now. But when I met John, I was a critical care nurse fairly fresh out of nursing school, and I thought the United States had the best healthcare system in the world. Then John got sick, and I had to be on the other side of the bed, so to speak. I was absolutely appalled by the way John was treated not only at the end of his life, but his entire experience from his diagnosis to when he passed three years later.
After he died, I was so angry I just wanted to fix things. So I went back to school and ended up in hospital administration as a chief nursing officer and chief administrative officer. At the time I thought we were making change. I could show you all my data and my charts and my graphs and tell you how we were doing everything right. Then in 2015 my current husband ended up as a patient in my hospital for 15 days and almost died. Here I was on the other side of the bed again, thinking, You’ve got to be kidding me. How is it possible that this still sucks?
Not long after that, I moved into consulting to help improve patient safety and clinical outcomes in healthcare. The sad thing is, from 2001 to 2015 to now, things still haven’t changed.
Maureen: As a family, we’ve always credited Donna with getting John’s life back on track.
Donna: But that’s just family lore. He had already cleaned himself up by the time I met him, because if he hadn’t, I never would’ve dated him in the first place.
Maureen: John had problems with drugs since he was a young man. By the time he was 18 or 20, he was working in Old Town Alexandria and couch surfing at a friend’s house, where he stole from his friend’s family to support his drug habit. He was arrested, and later, after he violated his probation, he ended up incarcerated downstate. That’s a slice of life, walking in and seeing your little brother in prison. Later, when Donna came into the picture, he really took a right turn for the better.
Donna: When I met him, he had been dating my roommate, and after they broke up, he asked me out. I told him no. Later, I needed help moving, and he offered his truck on the condition that I go on a date with him. Keep in mind, he was sexy as hell. Just such a cool cat. And he was different from anybody I’d ever met. His story was that one day he woke up on the side of the GW Parkway and had no idea how he got there. That was when he decided to kick the habit.
Our first date was February 3, 1990. Exactly three years later, we were married. We had our first daughter in 1993 and our second in 1995.
John was an artist who worked in antique wood and metal restoration. He didn’t really make a lot of money, and so between my nurse’s salary and his starving artist’s pay, we didn’t have much, but we were doing the best we could. When our girls were two and four, we had finally saved up enough money for a down payment to buy our very first house. That’s when John was diagnosed with stage 4 non-Hodgkin’s lymphoma. He was 33 years old.
I remember calling the mortgage company and saying, “Nevermind, we’re not buying a house. We’re buying a bone marrow transplant.”
So three months after his diagnosis, John had a bone marrow transplant, and a few months later his scans were clear. However, John was possibly the most noncompliant patient I’ve ever met. He kept smoking and didn’t take his medications, and he developed graft-versus-host disease (GvHD). Over the next three and a half years, he had pneumonia more than a dozen times. By the end of his life, he weighed 110 pounds.
Between dealing with insurance, which kept changing for John based on his employment, and dealing with an ever-changing roster of new doctors as a result, the healthcare system was just another obstacle in John’s care. It was a constant battle for either of us to be included in the decision-making process. For example, one time near the end of his life, he landed in the ICU again with an infection. They put him on a ventilator and a feeding tube and the whole nine yards. I was pushing for them to extubate John, and they said, “We can’t.”
I said, “I know you can.”
Finally we woke him up from sedation so that he could tell them himself what he wanted. I told him his options, and he said, “Take the tube out.”
Sure enough, John did really well once he was extubated, well enough that they discharged him from the ICU to the oncology unit. At that point, about five days after the extubation, I said, “John, we’ve got to talk because this is going to happen again. I need to know what you want me to do if you go back into respiratory distress.”
“I’m done,” he said. “Leave me alone. I’ll sign my own DNR.” And he did.
Maureen: I remember that around the same time he was in the ICU, he was complaining about pain. And the nurse was unwilling to give him more medication for pain control because it was a scheduled medication. Donna walked to the nursing station and said something to the effect of, “You give him the goddamn morphine, or I will.”
Donna: John couldn’t be on regular immunosuppressants, so we had to treat his GvHD with steroids, which made his bones very brittle. He had long bone pain as a result of that and had been in pain for years.
Maureen: I think John was very fortunate that Donna understood the healthcare system. If you don’t understand when it’s appropriate to push and when it’s not, you can’t optimize the experience of any patient. At the same time, Donna and John didn’t have a lot of money; John’s medications alone cost thousands of dollars a month out of pocket, and Donna had two little kids to care for. My parents had to backstop a lot of the expenses.
Donna: As a matter of fact, two years in we declared medical bankruptcy.
Maureen: If Donna were walking with John on this journey now, things would be very different. She can take time off when she wants, she doesn’t have children at home. You can see how this becomes an equity issue, because there are additional challenges to receiving good patient-centered care for people who lack time, knowledge and/or money.
Donna: In the last months of John’s life, I talked to his oncologist about getting him transferred to an inpatient hospice. And the doctor’s response to me was, “He doesn’t need hospice. He doesn’t have cancer anymore.” I lost my composure then. My husband had a terminal pulmonary illness, barely weighed over 100 pounds and was in pain everywhere. He was dealing with intense shortness of breath and couldn’t even sit up on the side of the bed much less feed himself, bathe himself or participate in other activities of daily living. He was clearly near death.
In fact, the day before John died I ran home from the hospital to take a shower and pick up my kids. While I was gone, with John’s family in the room, the same doctor who said John didn’t qualify for hospice came in, put a stethoscope on his chest, turned around and said, “I’m really sorry to tell you this, but he’s terminal.” Everyone was dumbfounded — it had been obvious for a while now that John was at the end.
John died just hours later of organ failure as a result of GvHD.
Maureen: I do believe if medical aid in dying had been available to John, he would have wanted the medication on hand so that he could have controlled the timing of his death. He would not have wanted to die the way he did.
Donna: Absolutely. He was 33 when he was diagnosed and 37 years old when he passed. If someone had given him the option of taking control in some small way over his life, I think it would have made a world of difference to him. I think he would have liked the opportunity to have a party, and then after the party he would have had just his family there. As it was, many of his closest friends and family didn’t get to be there with him at the very end.
Maureen: I think for him, an ideal end might have been listening to the Grateful Dead somewhere on top of a mountain with loved ones surrounding him.
Donna: That’s right. Somewhere in the Shenandoah Valley listening to the Grateful Dead.
Maureen: There are still so many structural and cultural barriers that impede the ability for the patient to be at the center of healthcare decision making. I mean, we’re moving in the right direction. It is better than it was when John died. But we still have a long way to go. Primary care physicians are not trained to have conversations with people in their 60s, let alone younger, about their wishes at the end of life.
Donna: The bottom line is healthcare workers are not trained to listen. With John, they didn’t listen to the people who knew him best; they didn’t include us as members of the care team. I remember early on, when he was at Georgetown University in the bone marrow transplant unit, they had these windows with curtains on them that looked out onto the hallway. So the curtains were closed, but you could still see the outline of people outside the window in the hall. One time a group of doctors was making rounds, and John sat up in his bed and said, “What are they doing out there?”
I said, “They’re doing rounds.” And he said, “Are they talking about me?” I told him yes. “Well,” he said, “then why are they doing it out there?”
That was the first time that I thought oh my gosh, he’s absolutely right. We are missing the most important people on rounds. And I can tell you that however many years later, I go into hospitals and say, “So do you include the patient and their loved ones in your rounds?” And they say, “Oh no, no, we don’t do that. We would never do that.”
If we did a better job of coordinating care, making it patient-centered, then people would be so much better off. Palliative care is much more of a thing now than it was in 2001, but there’s still so much hesitation, and people get it confused with hospice. Whether it’s palliative care or medical aid in dying, people need to be treated as members of their healthcare teams to make informed decisions about what they need.
Maureen: Having multiple loved ones, including John, who died long, prolonged deaths, knowing that’s not what they would have wanted, it seems to me only right that we would give people who are dying the option to end their suffering on their own terms. And everyone should be equipped to plan for their death. We plan for everything else — marriage, the birth of our children, college, retirement. We plan our PowerPoints for next Friday’s presentation. So why isn’t this a critical part of conversations with our healthcare providers?
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