“Hospice”... It's not a bad word.

surprised babe.jpg

 

So here is something I have had a hard time understanding – but let me first preface by saying that I think working in hospice is a very specific calling. Also, I understand that not everyone views death as I do. I mean, if you’ve ever spent much time with anyone who has worked bedside in palliative care or hospice, you have likely noticed that we have a very sick sense of humor and outlook on life in general. For Pete’s sake, we have held the hands of dying patients, comforted the widows, called the parents of the dying to explain they may never make it in time to see their only child alive again. These. These are not happy moments.

So what do we do to survive? We laugh. We make untimely light of certain situations. It’s not cold. It’s merely a survival technique and coping mechanism...even if at times it is in poor taste. And please know, this humor is never displayed in front of patients or families as we have an incredible respect for the dying process – emotionally, physically, and spiritually. This is just a cathartic act that is only done when we are surrounded by peers. There is often a mixture of tears and laughter, not always in equal parts. This is because there is no “recipe” for coping with being the caregiver or provider of a dying patients. I wish there was!

 
Now back to what I don’t understand – why is death a taboo subject? Why is the word “hospice” often accompanied by a shudder or whispers?
 

Everyone dies.

If more people would talk about death (what death means to them, what they want others to know when they die, what a “good death” looks like to them) it would give more people the opportunity to die with grace, dignity, and closure.

Funny how we send flowers and food to both those involved with death and those involved with new life (births). However, the approach is completely different….

When someone is expecting a baby…

“Congratulations!”

“When are they due?”

“Can we come visit?”

When someone is dying and goes on hospice…

“I’m so sorry.”

Along with nervous hushes and awkward silence.

What if, instead, we reframe the response –

“I’m sorry to hear there is a new direction in care. How do you feel about that?”

“Sounds like there may be more time to spend with family and doing things you love!”

“No more doctor visits or tests. How does that make you feel?”

The important thing is to talk about. To show support. To not let it become an elephant in the room. The person is still a person. They deserve to have a say and an opinion.

Death is not fun. It’s an end to someone’s life and a complete shift in many others’ lives.

However, hospice is a beautiful gift! Palliative care should be spoken of often and offered to all. Give the dying person an opportunity to make his or her own choices, spend time with family and friends, and direct his or her OWN care in the end.

Please.

- Jaymie Wilson, APRN-CNP, ACHPN