I lost a dear relative just over a year ago. She died too young and way too hard. She had congestive heart failure (CHF), high blood pressure and diabetes. She’d been diagnosed with her illnesses quite some time before the end of her life. However, as any medical professional can tell you, CHF has no real cure. She was very aware that this illness would be the cause of her departure from this life. As an unmarried woman, she verbally designated her adult children, all three of them, close in age, to be her health care representatives. Her children adored her and she trusted them to make decisions they felt best for her at the end of life. What she did not do, however, is complete an Advance Directive. This directive would have told her children what she would have wanted for her care. This would have made it clear to her hospital care team, what was important to her and what kind of care she would want to receive or not receive when she could no longer speak for herself.
Visits to the hospital for shortness of breath and labored breathing became more and more frequent. Her heart was weakening and her lungs were starting to fail consistently. She couldn’t have predicted when a visit to the hospital would be her last. How does one prepare to not return home? For more than six months, she was repeatedly admitted to the hospital, released from the hospital, readmitted to the hospital, released to a nursing care facility, and finally, readmitted to the hospital where she stayed until the doctors could do no more. For months, she was a “resident” in the ICU.
She died an uncomfortable, painful death one night, when the doctors “could do no more” but I believe she died much sooner. She had been placed on life support more than four times within a two-month span. She hated being intubated. She hated being swollen all over her body. She hated the needles, she hated not being able to speak or eat or move her arms and legs. She had to communicate with blinks of her eyes to yes or no questions. She was no longer a person free in her body, as she once was. She was a captive to treatment after treatment, procedure after procedure, test after test CPR after CPR… all because she didn’t have an Advance Directive that would have told her doctors and her family that this was not the way she wanted to live, or die.
The children meant well, but having already lost their father a few years earlier, they just didn’t know how to let their beloved mother die with comfort and dignity. They instructed the clinicians to, “Save her, save her, save her!” each time her body had had enough and I couldn’t help wondering, “Who are they really saving?” As long as there was a heartbeat, there was life… and that was ‘enough’ for them but they missed that it may have been ‘too much’ for her.
Dying doesn’t always have to be so hard. My loved one was sweet, thoughtful, gentle and kind, not a “Die Hard” but… she died hard. I watched her suffer. I watched her children suffer in the agony of not being able to let her go, even though they all knew there was no chance of a recovery; at least not one that would have allowed her to live life as she would have wanted. At the end of life emotions run high for the remaining loved ones. It’s not easy to watch someone you love die. I get that. I’ve lived that. I just wish that she’d had the document in place that could have saved her from so many unwanted treatments and saved her family from additional weeks of watching her receive those unhelpful treatments, all in the name of a ‘pulse.’
Since the death of my loved one, I have learned a lot more about death, dying and advanced care planning. I gathered the courage to “start the conversation” and encouraged each one of her children to complete their Advance Directives. I’ve encouraged each one of them to give themselves permission to think and talk about death. I’ve asked the question, “What would you want?” This story is sad and true, but a helpful learning experience for a grieving family, albeit too late for their mother, but thankfully, not too late for the rest of them.