Hospice: Quality of Life

If you don't think this is a picture of a Hospice patient, there's a lot you probably don't know about Hospice.

The patient in this picture - we'll just call her "Jenny" - has ESCOPD (End Stage Chronic Obstructive Pulmonary Disease). That means there isn't anything more doctors can do to help her. Her health status is not going to get any better. Indeed, it will only get worse.

The goal of her Hospice care is to manage her symptoms - hopefully keeping her out of hospital and doctor's office - and provide her with an optimum level of quality of life.

We do that by providing holistic care - tending to her body, her mind and her spirit. As a team. 

In the past nine months or so, we've watched "Jenny" get around the assistant living facility with her walker. We were able to add an attachment to her walker that allowed her to bring her oxygen tank and tubing with her wherever she went - and she needs to have oxygen running 24/7.

Several months ago walking became increasingly difficult for her, so she moved to a wheelchair with an attached oxygen tank and tubing as her primary mode of transportation. It wasn't easy to wheel herself, but at first, she insisted.

Lately, however, she hasn't resisted when one of us started to push her to wherever she was going.

Then, she got pneumonia.

The good news is that we were able to keep her out of the hospital. The bad news is that the infection left her with a breathing capacity that was even more compromised.

Wheeling herself around in a wheelchair became far too much energy to spend to make "getting there" worth it.

But, being able to "get there," more or less at her own speed, is what makes her feel alive.

Independence is what gives her "quality of life".

So, our team got together - nurse/case manager, certified nurse's aid, social worker, and chaplain - and determined to advocate for her to get a motorized scooter, something that would allow her to save the energy she would use to "get there" and use it while she was actually "there".

Our Hospice agency has something called "The Foundation". When people make contributions in memory of their loved ones, it goes to The Foundation. That money is used to help our patients in need pay their rent or utility bills. We've also used it to build wheelchair ramps, repair leaking roofs, fumigate homes filled with bed bugs, cockroaches and bees (Yes, bees!). And, we've even purchased apartment-sized washer-dryers. However, we've never gotten a motorized scooter.

Until now.

Part of the problem was that the usual financial assistance programs were not available to "Jenny", and neither she nor her family have the funds to pay for one. We tried to get a used one, but none were available at this time. And, The Foundation was concerned about liability issues.

Another part of the problem is that Jenny didn't feel she deserved one, so she kept demurring. "No, I'm fine. I can do it. I just have to pace myself."

The team agreed that she is, without a doubt, one of the most courageous people we know.

Hands-down. No contest.

She wants so much to live, she's so not ready to die - and yet, behold, she knows she is, in fact, dying - that she will push herself to get as much out of whatever life she has left that ... well.... as we all said today at our patient team meeting with her Assisted Living staff . . . she's our hero.

So, we appealed to The Foundation and . . . with a little push here and a little shove there ... they . . . said . . . YESSSSSS!!

The scooter arrived on Friday. In a box. It needed to be assembled. So, one of our team had a friend who has a friend who called in a few favors and, voila! The scooter was assembled.

Then, it had to be plugged in and charged up. It was ready Sunday. And, Monday. But the CNA (nurse's aid) reported that she wasn't using it. Part of it was fear/anxiety, but a bigger part of it was that she was completely overwhelmed by the generosity of the gift.

So, we had a little team gathering today - even our Clinical Director came - to support her as she learned the basics of how to operate a scooter. We were even able to take the attachment to hold the oxygen tank which had originally been bought for her walker, and then her wheelchair, and use it on her scooter.

I wish you could have seen the smile on her face when she realized she could totally do this.

And then the tears in her eyes as she realized what this opened up for her.

"Jenny" wiped her tears, smiled broadly and then said, "If you'll excuse me, I gotta go. I can't be late for my exercise class."

And, off she went.

I snapped this picture as she did.

That photograph above, my friends, is the very picture of what quality of life for a Hospice patient looks like.

I can't think of a better way to have spent Tuesday in Holy Week.  It's the day when clergy in Episcopal dioceses around the country traditionally renew our ordination vows in cathedrals with their bishops.

The gospel lesson for today is from John 12:20-26.

"Now among those who went up to worship at the festival were some Greeks. They came to Philip, who was from Bethsaida in Galilee, and said to him, "Sir, we wish to see Jesus."

As I looked at the faces of my team members and saw the tears of joy in their eyes, I needed no further evidence that Jesus was present in that moment.

It's moments like this when I realize that I've never felt more like a priest. 

I came home and read over my ordination vows.

I've re-uped. At least for another year.

Well, truth be told, for as long as Jesus gives me work to do.