End of Life Choices

I was inspired to write this post after hearing an interview with a representative from Compassion & Choices on Colorado Public Radio this morning. The program interviewed a man whose wife, stricken with a terminal illness, had chosen to ingest medication to end her own life. In 2016 Colorado voters passed proposition 106 which made this practice legal. In 2015, when Leslie died, this option was not available to her, but had it been, there is a good chance she would have chosen to exercise it, although by the time she would have wanted to make that choice she might not have been able to do it.

Today marks the 4-year anniversary of my having to decide to admit Leslie to a hospice facility. She had wanted very much to die at home, and I was committed to honoring her desire. We had enrolled her in the home hospice services of SCL Health and had been getting regular home visits from a nurse who had given me instructions on pain management and how to administer the many medications that had been prescribed by Leslie’s palliative care physician. Up until about the last month of her life her pain had been fairly manageable. She remained active, lucid, and in good spirits. Early in March of 2015, however, I was giving her regular pain medications, and she began having vision disturbances that she didn’t understand and couldn’t really describe. My best guess is that it seemed as though she was viewing the world through a prism, with images reflected above and below what she was actually seeing. So that she could be outside as much as possible, we rented a wheelchair for outings to the park across the street and walks around Sloan’s Lake. We were lucky to have an exceptional string of warm weather.

Knowing that these changes in Leslie’s health were not good signs, Leslie’s brothers and her son came to spend several days with us, and with their arrival her spirits and well being in general received a boost. They all left for the airport early Sunday afternoon and Leslie took a long nap. She awoke early in the evening in quite a bit of distress that was not relieved by the pain medication I had at hand. Although she was awake, she was very agitated and not really coherent. I phoned in for a stronger prescription, but in spite of my best efforts I could not get her pain under control. By late the next morning, a Monday, and on the advice of the hospice nurse, I admitted her to the Collier Hospice facility, where they struggled until late that evening to bring her pain under control.

I’m reflecting on these circumstances now because neither Leslie nor I were prepared for how suddenly or how severely here decline would be. I thought the medication I had would be adequate for managing her pain, and I naively thought there would be a predictable, linear progression from poor health to death. This is important for people who have terminal illnesses and think they may want to ingest life-ending medication at some point. From what I understand, the law requires that the patient must self ingest these medications. In Leslie’s case, by the time she would have wanted to do so, she would not have been capable of taking the medication her self. If we had known how quickly her decline would have been once her vision disturbances had set in (and subsequently had been told that an MRI revealed her cancer had spread to her leptomeninges), perhaps she would have chosen, had it been legal at the time, to end her life while her son and brothers were still her. And, had it been legal at the time, maybe the hospice nurse and/or the palliative care physician could have counseled her to do so to avoid her subsequent suffering.

At one point while the hospice staff was struggling to bring Leslie’s pain under control one of the practitioners asked for my consent to sedate her if necessary. I gladly agreed, not fully understanding the implications. Eventually sedation was not needed and Leslie’ pain seemed to subside. She appeared to be resting comfortably, but she never spoke another word for her remaining eight days of life, having slipped into somewhat of a comatose state without sedation. I later learned that the practitioner was hesitant to sedate her because sedation causes unconsciousness but it is not clear whether it completely eases pain. It is an awful thought to imaging experiencing pain while being unconscious.

Lukas, Leslie’s son, came back up from Albuquerque after I told him that she had been admitted to the hospice facility and was not likely to regain consciousness. Several of us had been in the room with Leslie for hours, and in my case several days, without seeing any response from her, when Lukas came in the room. Although she did not speak, she clearly reacted to his presence, which was noticed by all who were there.

I am very sorry that in the end I was not better prepared to ease Leslie’s transition into death. I don’t really know if there is any other way things could have played out. Leslie always accepted that glioblastoma was not survivable, but she also believed that she would be among the 1 in 10,000 that enjoyed 5 years of good health post diagnosis. Even after her steep, dramatic decline, I never heard her express fear of death or self pity. She only worried about how her death would affect those who loved her after she was gone. And even in pain she wanted to live, so this makes me wonder if, even if it had been legal at the time, she would have chosen to take life-ending medication. I will never know.

From First Symptoms to Diagnosis

On October 26th, 2013, a typical, beautiful, sunny Denver autumn afternoon, Leslie and I walked up to a Halloween street fair on 32nd Avenue to meet Alison, Sam, and Ainsley. Ainsley was dressed as Jessie from “Toy Story”, and Alison was eight months pregnant with Elliot. We had been there for an hour or so when I looked around and didn’t see Leslie. After searching for a few minutes I found her wandering a bit disoriented through the crowd. We talked for a few minutes and she seemed OK but a little distracted, so we decided to walk back home. I had to point out curbs and intersections to her, but after she took a long nap she seemed fine. She had no more episodes for the rest of the year.

Some time in January Leslie casually mentioned that lately she had been bumping into walls and doorways on her left side that she had not been noticing as she passed them. She’d had Lasik surgery the previous year, and she wondered if she might need to see the ophthalmologist because perhaps she needed further vision correction. When she continued to bump into things she made an appointment. The ophthalmologist, on February 3rd, found that she had almost completely lost her left field of vision with both eyes, so he immediately referred her to a neurologist. This was a Monday. On Thursday, the day before her scheduled MRI, we agreed to meet for dinner at a local restaurant after work. We enjoyed our dinner and joked about the good news we anticipated getting the next day.

After dinner we drove home separately, but I became concerned when, twenty minutes after I arrived, she still had not. When Leslie finally pulled into the garage she was unaware that she swiped the left side of her car against the garage entrance, but came into the house concerned that she had gotten disoriented driving home and had found herself several miles out of her way before correcting her route.

The next day, after the MRI, we were told that Leslie had a brain tumor that was most likely a glioblastoma (GBM), and would require surgery. A biopsy would tell for certain if her tumor was indeed GBM or, less likely, a tumor that had metastasized from a primary malignancy somewhere else. The neurosurgeon told us that the second scenario would offer slightly more hope, since it would be more treatable than a GBM. In the mean time, we did our best to carry on as usual.

We looked into several clinical trials on the assumption that the diagnosis would be GBM – some that we researched on our own and quite a few that were forwarded to us by Deb, Leslie’s sister in law. Leslie determined that none looked very promising, and all looked like she would have to sacrifice her quality of life to be a subject in an experiment that would not really benefit her. She opted for the current standard of care/best practice that Kaiser Permanente Colorado offered.

We had previously bought tickets to see Midori perform with the Colorado Symphony on February 14th, the following Friday. Neither of us wanted to go, but we hoped that hearing her perform Mendelssohn’s Concerto in E Minor and the Romance from Wagner’s Tristan and Isolde might be a way to try to momentarily escape what we really could not. I’m sure the performance was wonderful, but it did not soothe either of our troubled souls that night.

Leslie’s brother, Mike, flew out from Albany, NY to be near Leslie when she underwent surgery on February 24th. Todd Crawford was Leslie’s neurosurgeon. The procedure went well, but he did confirm that her tumor was a GBM. Mike provided great comfort, moral support, and humor, and helped set Leslie on course for a great recovery and subsequent year of good health and happiness.