By Brian Hennon
I met William and his family in their small Cape Cod house on a quiet, tree-lined street. He and his wife had lived there for over 60 years and it was filled with visible memories. From pictures on the walls to measurements on the kitchen doorpost, there were signs everywhere.
William was now in his late-80s, struggling to recover from a recent hospitalization and rehabilitation stay due to COPD and Emphysema. Things had been getting progressively worse and now he was using six liters of supplemental oxygen, 24 hours a day.
When he was discharged from the rehab hospital they set him up with skilled home health care. This originally included one nurse visit, as well as physical and occupational therapy once per week, but had now been reduced to simply one physical therapy visit every week.
Jason was the therapist and he was getting ready to discharge William because he had reached his functional goals. Unfortunately reaching functional goals is a relative term and William still needed help.
His wife, Sylvia, was struggling with mild dementia and at less than 90 pounds herself, it was nearly impossible for her to help William. She couldn’t help him shower or get to the toilet and frequently called her daughter, Marlene for help. Marlene was exhausted.
We sat at the kitchen table, discussing the situation and the conversation was all over the place.
William was nervous about losing his therapy and what little independence he still had.
Sylvia would get angry because she didn’t need help with William.
Marlene would throw her hands in the air and say, “I give up!”
I was so busy pin-ponging from one person to the next, trying to answer questions, objections, and simply keep everyone calm and on-topic, I still hadn’t even started talking about hospice yet.
When we finally got around to the subject, the objections got louder and the questions came fast and furious.
“I’m not dying!”
“I don’t want a bunch of strangers in my house!”
“Why can’t I just keep doing therapy?”
“Can dad still take his medication?”
“I don’t need help taking care of my own husband!”
What about his Cardiologist appointments? Neurologist? Pulmonologist?
Can he still get blood work?
What about the injections he gets for his eyes?
Once we got through the objections and questions, I was able to explain how hospice can be the best of all options.
With a nurse on call 24/7.
With an aide to help with showering and bathing.
With medication to help manage symptoms and reduce the risk of re-hospitalization.
With equipment to help William breathe, ambulate, and sleep better.
We talked for several hours and they eventually all reluctantly agreed to try hospice.
After about two months, William’s health continued to decline. Sylvia had forgotten the entire conversation and got angry that William wasn’t getting therapy any longer. She blamed that on his decline and demanded he be discharged from hospice and therapy resume immediately.
Three days later, William’s breathing became labored and they called the 24/7, hospice triage number, but because they had revoked hospice, the nurse was unable to legally give them any medical advice and advised Sylvia to call 911.
He ended up back in the hospital.
From there William went to rehabilitation again, but this time it was a different facility with lower quality scores and significant staffing problems.
He was left in his bed for hours on end. No turning. No repositioning. His legs grew weaker, a pressure sore developed, and it became clear to everyone that he would never go home again.
William died in that facility less than a month after arriving.
I got a call from Marlene a few days after he had passed. She had some things of her dad’s that she wanted to donate, but while we talked, she started to cry.
When I expressed sympathy for her loss, she said, “thank you, but I’m more upset about how this happened than anything. I wish we would have just kept Dad home.”
Marlene is one of thousands of people who realized too late that hospice was the best option. Sadly it isn’t seen that way by most medical professionals, so patients and families don't get an accurate picture.
Unfortunately, hospice is seen as the last resort rather than the best option.
The best option for...
The 72-year-old woman with advanced dementia who gets more confused and more agitated every time she has to go to an appointment.
The 96-year-old man with advanced heart failure who declines a little more with every trip to the hospital.
The 56-year-old woman with metastatic lung cancer who gets sicker and sicker with every new experimental treatment.
The 80-year-old lady with COPD, on eight liters of supplemental oxygen which increases to ten when she simply readjusts herself on the couch.
The 66-year-old guy who had a stroke, is completely bed-bound and dependent on a feeding tube for nutrition.
Hospice doesn’t mean these people give up.
It means they stop a plan of care that isn’t helping and change course.
It means they stop ineffective treatment that is only making them feel sicker and opt for a plan of care that prioritizes comfort and quality.
It means they stop extending life artificially.
It means they stop simply existing.
Yes, hospice is end-of-life care, but it doesn’t have to mean the end of living.
It’s time at home in a favorite chair.
It’s sitting on the back porch with grandchildren.
It’s moments of peace, watching the birds in the back yard.
End-of-life isn’t fun or pretty, but it doesn’t have to be chaos.
That’s where hospice can be the best option.