Transition to Hospice Care –
My wife and I were in the Emergency Department of the hospital late one night when the issue of hospice first came up. She needed yet another thoracentesis; it was sooner than we had anticipated, and so we had not scheduled it as an outpatient procedure through the hospital’s imaging department. The pleural effusions were occurring more frequently, her pleural space filling with fluid at a faster rate, than it had previously — a byproduct of the advancing cancer. Whereas she had needed to have the fluid drained every few days, it had accelerated to every other day. But we sat in the hospital ED just a day after her last thoracentesis, the accumulated fluid making it more difficult to keep her blood oxygen saturation high enough, especially with her severe lung disease complicating her breathing. We thought that perhaps she would need to have the fluid drained daily going forward.
The hospital doctor filling in for her primary care physician asked us if anyone had talked to us about hospice. We told him no. He looked perplexed and said that it apparently was the elephant in the room that no one wanted to talk about with us. He kindly and gently explained that she was getting to that point where her need to have the fluid drained was getting to where it wasn’t really practical to keep having it drained, especially because it was accelerating. He said that, unless her oncologist had a silver bullet, any chemo she was taking wasn’t working. And, rather than putting her through more chemo or procedures that would cause her more suffering and distress, we should think about transitioning her care to hospice where the focus would be on maximizing her quality of life rather than extending it at whatever cost to her quality of life.
We cried. It was another major turning point — like when she first had her COPD diagnosis, when she was told she would have to use home oxygen continuously, when she was told a little over a year ago that she had a rare and aggressive form of leukemia. Those were all major blows to life as we knew it, to our sense of hope to continue living the life we had enjoyed for so long, to our dreams of certain travel destinations and life events that we had looked forward to. One by one, we had let those hopes and dreams go, grieving each. And now, we were at another fork in the road with a decision to keep fighting a losing battle or to seek a way to preserve whatever quality of life she could get for as long as she could. The real but unexpected upside was the relief of feeling like we were getting off the hampster wheel of running towards a goal (a cure, total or partial remission) that seemed increasingly elusive and unrealistic, though no one would come out and say so.
Redirecting Caregiver Focus –
In the weeks that followed, my wife’s pain medications were adjusted. Frankly, the hospice team proved their superior knowledge and skills at how best to manage her pain. My wife signed a pre-hospitalization DNR order so that, if she stopped breathing or her heart stopped beating, there would be no intervention to reverse that. And we agreed that, if she got into critical distress, we would call hospice first rather than 911 or jumping in the car to go to the ED. Of course, we could opt-out of hospice at any time if she wanted to get treatment to help heal (extend life), but that was not consistent with hospice.
The hospice focus on her comfort rather than life extension did include the thoracentesis she was needing every day or two, as long as she wanted to continue doing that. And that was making the biggest difference in her quality of daily life. That felt good, especially because the ultrasound team of technicians, nurses and doctors who conducted the procedure had become like family.
As I met with a new therapist during this time to help me begin to prepare for losing my wife and facing my grief, however, I realized that my wife and I had become swept up in the excitement of improving her quality of daily life. It meant no more trips to the oncologist for hours of chemo infusion, nausea, etc. But our focus stopped there. We had not yet put it in the context of her overall decline towards death, which we were no longer trying to stop or slow down. I saw that I understood that bigger picture intellectually, but I had not made the shift emotionally.
My heart sank as I recognized that I had to give up my years of focusing on her care with a view towards her healing — a cure, remission, recovery, resumption of a more normal life, more years together at some sustainable level of life quality. Working to “save her” had become my primary identity and life purpose for years. Even if I ultimately was unsuccessful (as I strongly suspected I would be), at least I would be unrelenting in my single-minded focus on saving and extending her life.
Giving up my caregiver identity as my wife’s partner-in-healing — another version of my larger role as her protector, her rescuer — was yet another loss that I grieved. With great sorrow, I finally let go of my illusion that I might be able to help save her from her fate, her destiny, and her purpose beyond this world. What remained was my role as her partner in a different kind of “healing” that isn’t really thought of as healing at all in our culture. I remembered how native cultures view healing as broader. As Kenneth Cohen writes in “Honoring the Medicine: The Essential Guide to Native American Healing”:
The efficacy of a cure can be measured; it belongs to the realm of science. The effects of healing are not as easy to quantify because healing touches every aspect of a person’s life — it belongs as much to spirit as it does to science. . . . Sometimes, the result of a Native American healing for cancer is family harmony and a more dignified passage into the spirit world.
I knew my efforts needed to be refocused on helping her realize her larger destiny and purpose, even though it meant losing her physical presence. This was the final phase of my service to her. I told my wife that my focus from that point forward would be to take her hand and put it securely, lovingly and peacefully in God’s hand.
Unfathomable Release –
On my wife’s last day in this world, the hospice team provided a high level of support and comfort to both of us. At one point two hospice nurses and their supervisor had taken over our dining room table and made it into a kind of on-site nurses’ station. There was nothing for me to do, and they sent me off to get some badly-needed sleep, promising to wake me if anything changed.
Waiting was something else that I was not prepared for. I was so used to doing as a family caregiver, acting with a sense of high urgency to help with medications, getting my wife to appointments, assisting with meals and other things she needed my help with. But as the dying process comes into nearer view, the need to “do” yields to a need to “abide.” In fact, I recognized that this was the sacred time to just be with her. We were back to our essence as human beings, our beingness, both individually and together.
I realized, even before others told me, how much waiting for death is like waiting for a birth. It is a natural process that comes in its own time — in God’s time, as my wife would say. While the fact of it is certain, the exact time is not. And so, we must just be with ourselves and our loved one.
In the early evening, after I returned from walking the dog, the hospice nurse came to get me. She said my wife’s breathing had changed, and that she thought the time might be close. So, I hurried to my wife’s side. I sat and took her right hand in mine. I recited the Lord’s Prayer, which my wife had me do often in preceding days and weeks. But now, her voice could no longer join mine. The nurse joined instead. At the conclusion of the prayer, I directed reiki to my wife to make sure she was surrounded with as much positive energy as possible. And I watched as her breathing slowed, and she took her last breath.
I had fulfilled my promise to hand her to God in love and peace, releasing her to the mystery of a larger purpose and destiny that I could no longer see or understand, her unbirthing from this world into the Unknown. The sheer magnitude of that moment, the implications, the mystery, and everything that led up to it and that would follow were simply unfathomable to me as I slowly released her hand and her form to her journey beyond my grasp.
Copyright © 2009 Joseph Kornowski
