Comfort kit: Hospice journey, part 2

WRAL contributor Sloane Heffernan is sharing her father's journey in hospice care. Read her previous post.

The knock on the door came just a few hours after the paramedics brought my father home from the hospital. I held my breath. I was filled with a mix of dread and anxious anticipation. We were about to meet my father's hospice case manager, Sean. He was here to walk us through the next steps in our hospice journey.

I opened the door and was met by a big guy with a warm smile and a reassuring look in his eyes. I instantly felt a sense of comfort and ease. He would take care of us. I exhaled.

The next hour and a half was filled with questions, instructions and paperwork. Sean, a registered nurse asked my dad about his symptoms, medical history and medications. My 82-year-old dad had decided two days earlier to enter hospice, after exhausting treatment options for some chronic health issues.

There are many misconceptions about hospice, and a big one is that a person is giving up if they enter hospice care. It is quite the contrary, terminally ill patients (with a prognosis of six months or less) are deciding how they want to live!

My father would still receive care and treated for symptoms. He would continue to take his daily medications and most of the medicine prescribed in the hospital, but there would be no more poking or prodding.

He was transitioning to comfort care. And that care would now be handled at home, which leads me to another major misconception. Hospice does not provide the general day to day care, that job would be left up to me and my brothers.

We learned that a nurse would visit once a week initially, and a certified nursing assistant (CNA) would come to provide personal care (like bathing). My brothers and I would handle the rest. We were given a Hospice Hotline number to call anytime day or night. We also received several pamphlets letting us know what to expect in the coming days, weeks and possibly months.

Before he left, Sean presented us with a white paper bag known as the Hospice Comfort Kit. This emergency kit contains medications for a "medical crisis." It would allow us to treat any "distressing symptoms" as quickly as possible with guidance from the Hospice team.

The Hospice Comfort Kit contained medication for pain, anxiety, nausea and breathing problems. We were told to put the comfort meds away until they were needed.

After hearing the instructions, I asked Sean if he had a comfort kit for me and my brothers. I knew how I was feeling. Stressed. I can't imagine what was going on in my father's mind. Nothing can truly prepare a person for receiving instructions on how to die at home.

In that moment, comfort didn’t come to mind.