June 17th, 2021 The choice was either dialysis or die in days, weeks or in three months. At the age of 72. And like many in this generation, he had declining health. Decades of smoking cigarettes—BUT quit 35 years ago. Diabetes, High Blood Pressure, neuropathy, cataracts, blind in one eye, high cholesterol, multiple surgeries since February 2021. Despite these setbacks, he entered the 70th decade of his life relatively healthy compared to many of his contemporaries, who seemed to spend much of their lives in hospitals or nursing homes. His life became simpler about 7 months ago, not by choice. maintaining his health; living in the comfort of his home with the love of his life, Joy, & his dogs. He could still drive a little but mainly I was taking him to all doctors visits and Jason, his son taking him to grocery store & where else he needed & still needs to go.
Reality Strikes
On the way home from the nephrologist on June 17th, 2021. George says “ We all need to sit down & have a meeting”. After hours of inpatient waiting for Jason to get off work, the family meeting started, including discussion of whether Dad would pursue, other diagnostics, ultrasounds, lab work and dialysis.
Dad was bombarded with a barrage of abstruse medical terms such as “uremia,” “hemodialysis,” “shunt,” and “fistula” and asked for my help in understanding the medical jargon. As I explained what dialysis actually entailed, he seemed surprised to hear that placement of a vascular access for dialysis required surgery. Similarly, he seemed shocked when he heard that hemodialysis usually meant going to a dialysis facility several times each week and getting connected to a “blood-purifying” machine for several hours, and then often repeating this weekly routine for the rest of one’s life. He was not a candidate for peritoneal dialysis due to a skill saw accident that happened 3 years ago that left him one handed. Jason & I offered to do whatever was needed for whichever dialysis option he would chose. After thinking about it & talking George decided he was tired, he didn’t want anymore labs, ultrasounds, etc he just wanted “comfort care”. Jason & I couldn’t come to terms with what he had decided that day. We ask if he would give it some thought & we could meet again. George agreed and said we could meet Father’s Day.
Throughout my professional life, I had been involved in the care of many patients on hemodialysis. I had seen firsthand how it saved many lives, but I had also witnessed its complications, such as clotting and infection of the vascular access, frequent hospitalizations, bloodstream infections, and severe exhaustion following a hemodialysis session. To my father in law, I tried to convey a balanced view: Dialysis is life-saving but often comes with a price that some may not accept. George didn’t need to hear those because his mind was made up.
Father’s Day came and our meeting was very brief. George said he didn’t want to be a burden on Jason and I anymore than he already was. We told him he was not a burden and we would support his decision.
He worried about what might happen to my Joy, who depended on him for many aspects of her life, ranging from paying the bills to going to stores. He also worried about losing his dignity and independence, and becoming a burden to his family if he opted for dialysis. His desire to retain his dignity during this phase of his life did not surprise us. After all, despite months of continued pain in his legs even during short walks, he refused to use his wheelchair unless he deemed it absolutely necessary, which indeed he rides a scooter in stores. He despised the idea of having to use an assistive device in public, but now is okay with it because it’s his only way around, lest his struggles be construed as those of a “cripple.” Now he was faced with the choice of another assistive device: the hemodialysis machine.
After realizing that there were no assurances that his quality of life would improve with dialysis, and that Joy would be cared for even after he was gone, Dad made his decision. He wanted to stay home and die peacefully. None of us was entirely on board with Dad’s decision. We thought it was tantamount to “giving up.” But we respected it. We got together with Hospice and did a plan for conservative management of his symptoms and hospice care.
Home Without Dialysis
Jason & I have moved in Friday-Sunday with Dad and we manage his care. We also got him lifeline. After years of caring for patients with end-stage kidney disease, for the first time I found myself on the other side of the fence, observing firsthand the impact of this disease on the life of a patient and his caregivers at home. George has gradually become lethargic as he has worsened. On the contrary, he remains fully alert and began to experience a new and unpleasant symptom every couple of days, not replacing but adding to those that preceded it. He complained of being constantly cold. He has body aches. He has increasing difficulty getting out of bed. He has difficulty swallowing. Some days he doesn’t eat. His pain level in his legs are always an 8. His face is swollen in the mornings. His legs & ankles are swollen 24/7.
He has difficulty urinating a stream, constant nausea, and indigestion symptoms. But despite being in his frail state, he still wants to get behind the wheel for short trips.
The use of “comfort drugs,” including narcotics and antianxiety medications, was encouraged by the hospice staff. We have not been able to get George to take anything for pain or anxiety.
I have no simple answers. For now and until God calls him home Jason and I will continue to be there every step of the way.
