End of Life: Deciding to Stop Treatment

I recently had the opportunity to talk with a conference attendee regarding care for her husband who was in the late stage of Alzheimer’s. She told me that she had a wonderful daily helper whose assistance both she and her husband deeply appreciated.  

“But my helper doesn’t agree with us about his ‘end-of-life’ plan,” she said with a hint of dismay in her voice.

She went on to describe that early in their dementia journey, she and her husband had decided that for them quality was better than quantity. Her husband had expressed his desire to avoid a lot of medical intervention that might keep his heart beating, but couldn’t enhance his cognition. The caregiver and her husband were in agreement, but their helper did not concur with their choice—and was quite vocal about it.

“She thinks we should always be trying the next and newest medications, touting that he could live longer,” the lady told me.

This is a particularly sensitive area for caregivers. I know from personal experience it’s hard to stop looking for the next treatment, the next option available for our loved one; I refer to my own experience of caring for my dad who had been diagnosed with Stage 4 prostate cancer in 2005. He was conservatively given two years to live, but he worked with his doctors on a treatment plan while our whole family continued to pray for him. Day after day, year after year, he kept walking through life one step at a time—for 13 more years! The often-unconventional treatments were working, and they gave him 11 years (and they were good years) beyond what the doctors had originally projected. But eventually it became obvious the tumor was growing again, and the earlier help that had been provided by all those treatments began to taper off until even the most aggressive chemo wasn’t helping at all.

The peace we had regarding our perceived “wellness” of Dad’s health was then replaced by the agony of having to discuss the available options. Mom, Dad, my husband and I each clearly understood that for Dad’s treatment to stop, a fairly rapid, completely unavoidable countdown would begin, and it would track the moments until my dad was gone. We all assured him that the choice to continue treatment or to stop was completely his—we were committed to support him either way. And so, in early December 2018, my dad autonomously decided to stop all treatment.

When the hospice nurses made their initial visit in January 2019, they complimented his ability to sit up in his recliner; he wanted to appear normal and receive his guests like always. But they weren’t out of the driveway before he was pulling himself up from the chair to get back to his bed as quickly as he could. If his energy was the first casualty, then his appetite was next, and that was followed by his inability to leave his bedroom at all. He slept more than he was awake, and eventually the shortest of conversations proved too much for him—even during the “brightening” phase (known as Terminal Lucidity, the medical expression referring to a period of increased mental clarity and alertness during the dying process). The visitors came, some he hadn’t seen for years, and the stories were shared and laughed over; hands were gripped, tears were shed, prayers were said. When his final visitor left, the house fell quiet and only the hospice nurse came to check, to comfort, and to count the minutes with us.

The last forty-eight hours, Dad glazed over. He didn’t speak any more, only struggled through a raspy rattle. And we cried out to God for Dad’s release because we knew with confident assurance where he was going. Finally it came, on Thursday, January 24, 2019, at 2:45pm. We wept and let out a collective sigh—so glad for him, but so grieved for ourselves as we contemplated the vacancy of Dad’s chair.

Death brought a devastation—a complete and utter break in the relationship—and there was no going back from it. But as I regarded his quiet, finally peaceful body, even as the blotchy, purplish bruising began—an event brought about because his heart was no longer pumping, so the blood pooled where it was when his life left—I knew he was seeing amazing things that were beyond description. He was finally seeing his Savior—his Jesus—face to face.

Had Dad made the right choice to stop treatment when he did—after he had already fought so hard? Yes, I believe he did—even though the choice was unspeakably difficult for those of us who remained. I really did want him to stay just a little longer, but he had already been through so much, I just couldn’t begrudge his home-going. He fought with strength, ended the fight with dignity, and went home to a well-earned rest.

Everyone has to make this very personal decision individually, although it can be very helpful when the individual allows their family to participate in the discussion. This is what my dad did, and it’s the very reason I advocate pre-planning. I encourage families: talk together openly and honestly, and make the hard decisions ahead of time, before a crisis hits. Having an end-of-life plan already mapped out can ease the stress and grief of impending death—for both you and your loved ones.