When 2013 began, I fully expected that I would bury my mother and possibly my father during the year. My mother has had multiple myeloma for nearly four years, responding remarkably well to treatment. Her condition began to decline this past year and I began to mentally prepare myself. My dad has been planning to die since his heart attack in 1985 but his condition, too, declined over the past year or so with worsening congestive heart failure.

I did not expect to be diagnosed with cancer. Instead of facing their deaths, to some degree, I faced the possibility of my own and in the process questioned some of the treatments we undergo to avoid death. I’ve thought a lot about the costs of treatment, both financial costs as well as other hidden tolls. Insured Americans, like myself, seem mostly inured from the reality of the cost (and privilege) of health care. Although the whole medical billing system seems wildly inflated, it is pretty shocking to think that upwards of 300K has been billed to my insurance company for my treatment thus far. (95K has actually been paid.)

But after all this, I find myself keeping vigil at my mother’s bedside. Today we made the decision to stop further dialysis, blood transfusions and declined a procedure to possibly protect her heart and lungs from a dislodged blood clot. Today we signed up for hospice.

We are late in doing so but the intricacies of the same insurance system that so amply covered the costs of my care did not allow us to access hospice services while mom still received dialysis. We had to choose between them and for the last two months, our family chose to sustain her life with dialysis. As the quality of her life declined even with dialysis, we all began to question whether dialysis was worth continuing. She had hoped to live through the holidays and had accomplished that, enjoying brief family times during Thanksgiving and Christmas.

Another fluke of the insurance system is that the rules for hospice required that we leave the hospital and transfer either to a separate hospice facility, a nursing home or our home. “Problems” such as a blood clot, dangerously low blood counts or dangerously high potassium no longer counted in the equation once we signed the papers admitting her to hospice. Now “symptoms” alone mattered: pain, shortness of breath or difficulty breathing, unresponsiveness. Because Mom was alert, pain-free and breathing comfortably at the time of her evaluation, we could no longer stay in the hospital. It was surprisingly difficult (emotional) to leave one facility and move to another, even though the new one is really much nicer.

But now we are settled into the Angela Hospice center and becoming comfortable with another set of caregivers.

As soon as Mom was comfortably settled in her new room, one of the nurses cut off her hospital name band and DNR bracelet. When I arrived on Saturday I found that purple bracelet a stark reminder even though I knew my Mom’s wishes. I am in total agreement with the DNR decision as well as the decision to discontinue dialysis, but it still was a bit of a shock.

 

For now, we sit and wait. We attend. We attend to her needs, to any opportunity for meaningful conversation, to the process of dying. We also attend to the will of our Father because even if we can choose to decline treatment, we still watch and wait to see how God’s timing will be worked out. My mom has three “problems” that could cause an instant sort of death (hyperkalemia, a blood clot, and severe anemia) or she could die a more slow, peaceful death from renal failure.

Although “end of life” issues have been on my mind for much of the year, I am quite sure I’m not done with my pondering. With hospice, I am experiencing a world that is new to me. And while I’ve worked with dying patients and lost grandparents, in-laws, and close family members, I’ve never watched my own parent die. I’m spending New Year’s Eve in a room with two parents who are drifting in and out of sleep.

And pondering.