My husband was cognizant until his very last hours. He knew he wanted the option to decide for himself when enough was enough. Steve Barker passed away in June of this year after suffering chronic rejection due to a lung transplant. As it turned out, the assistance from hospice was perfect. However, he and I had many conversations about his wishes, and these included a potential relocation to Oregon in order for him to control the end of his life.
Steve and I shared a fulfilling marriage for 30 years. He was a determined, intelligent, and caring man. He spent his youth in the United States Marine Corps, joining at the early age of 17 after dropping out of high school. He volunteered to go to Vietnam and was the youngest sergeant there at one point when he was 18. He was very proud of his service. Steve returned from Vietnam combat to finish high school and then go on to earn an MBA and graduate from law school. Steve spent the last 11 years of his career at the Washoe County District Attorney’s office where the victims of domestic violence and sexual assault crimes found justice when he prosecuted their cases.
He was diagnosed with chronic obstructive pulmonary disease (COPD) when he was in his 50s. He spent years without disruptive symptoms until the spring of 2017 when he had a COPD exacerbation event. He ended up in the hospital and it was evident he was in bad shape, but neither of us understood how bad it was. This was the start of his journey toward a lung transplant.
He was soon evaluated by a surgeon at Stanford who could perform lung volume reduction surgery, a procedure where pieces of damaged lung tissue are removed to allow the remaining tissue to function better. In order to move forward, Steve was required to finally stop smoking and complete pulmonary rehabilitation, both of which he did. His surgery was scheduled for February 2018. Unfortunately, as Steve was being put under anesthetic he went into cardiopulmonary arrest. Surgery was abandoned and Steve was moved into the intensive care unit.
Steve was heartbroken and with tears in his eyes he told me, “This was my chance. I don’t know what I’m going to do now.” At that point, he did not want to pursue the option of transplantation, a grueling medical procedure and recovery.
Once Steve was discharged from the hospital and we were back home, he brought up the idea of moving to Oregon so that he could utilize their medical aid-in-dying law. He asked about my willingness to relocate to support his decision. I said yes, but my heart was heavy. I was mad that we would have to uproot ourselves to establish residency in a state where we have no family, a place that was not home for either of us. All I could think was: Everyone should have the option of medical aid in dying available to them where they live, where home is.
We wanted more time together, and Steve wanted more time with our daughter and toddler granddaughters, as well, so he decided to be evaluated for a lung transplant. He was cleared to be placed on the list for a left lung. Steve expected to be on the list for years, a sadly typical event for organ transplants, but 36 hours later we were shocked by Stanford’s call to get to the hospital for surgery. We spent nearly the whole summer of 2018 in northern California for Steve’s surgery and recovery.
Everything went smoothly and Steve did really well for a year. He was walking up to six miles a day, up from only being able to take a few steps before being out of breath. Then, he caught something that probably would have just been a cold for a person with healthy lungs. This led to sepsis, which led to time in the hospital—likely kicking off his chronic lung rejection.
We weren’t without hope. Doctors can treat organ rejection, which is common for transplant recipients. They tried photopheresis, a procedure to suppress the donated organ white blood cells that view the recipient’s body as foreign and attack the body. This treatment was exhausting, requiring hours at the out-of-town clinic each time. We didn’t know if Steve was going to respond positively and the idea of relocating to Oregon was always weighing on us.
The photopheresis worked to slow down the rejection, but was not immensely helpful for the long term. Steve was getting continually worse, it was continually harder to breathe. Our worst fear was him lingering for weeks at the end of his life. Knowing this, his providers referred him to hospice for an evaluation. We weren’t mentally ready, though. At that point we were still holding out hope and enrolling in hospice meant Steve couldn’t continue with treatment. We opted to work with a palliative care team instead of hospice so that Steve could continue with treatments
Hospice recommended we not wait, and now I understand why. We waited too long. Steve had been in pain on and off, but it got really bad the day before he died. His goal was to die at home. He did not want to go to the hospital, which is why I wasn’t taking him. We fortunately had morphine and anxiety medication at home, which his palliative care team had prescribed for Steve’s shortness of breath. We now had to adjust and use it to manage his sudden excruciating pain. I was mad that we didn’t have a better option on hand and I didn’t know how much I could use without overdosing him.
I called hospice that evening and let them know we weren’t on service with them but had had a consultation, and asked for guidance. The next day, with many thanks to Steve’s VA social worker for arranging, they came in to help. Steve’s pain was unbearable without a more serious opioid—they let us know they could apply a fentanyl patch but it was likely that he may not wake up once it was applied. Steve understood and agreed to move forward. Less than five hours later, he took his last breath.
I was so grateful Steve did not linger because that’s not what he would have wanted. But, all I could think is, it’s got to be easier. Steve’s last 24 hours were horrific. He was in a tremendous amount of pain and we scrambled to get him enrolled in hospice. We lucked out that it happened on a weekday so all the necessary staff to get the last-minute referral for hospice and them to come in immediately was possible. There was a chance that we wouldn’t have been able to get hospice that day. What if it would have happened on a weekend?
Steve had his six month prognosis at least three months prior to dying. If we had the option of medical aid in dying in Nevada, he would have pursued obtaining a prescription. I don’t know if he would have ultimately used it, but having an alternative in hand would have eased both of our minds. That assurance would have lessened the stress and fear of his pain and suffering. He deserved the opportunity to make his own decision and I honestly believe he likely would have availed himself of the option.
While it did not come to this in our case, I am determined to help Nevadans have this option in our state. We are currently allowed to say whether or not we want to be intubated, resuscitated, fed with a tube, etc. Terminally ill adults should also have the option to shorten their journey of suffering at the end of life.