Start talking ... now!

"Give it to me straight: do I have much time left?"

This was the question posed to me by a new patient just recently. She had cancer and it was spreading ... quickly.

"No, your time is growing very short."

Last week, she was walking throughout the nursing home. This week, she is bed bound.

"Will I be healed?"

We live in a "fix it" society that believes medical technology can fix anything. We deny that we will grow old, get sick and die. We forget that healing isn't just about the body.

"Yes, you will be healed, but not in the way you might have expected. Your cancer will not go away and will likely take your life. But your spirit will be healed and God's perfect healing for all of us is on the other side of the grave."

Sometimes it is spiritually and emotionally healing to let go of a futile fight. There is peace when we can stop raging against a progressing illness and just be there.

"Will I make it to North Carolina?"

Her daughter lived there and this patient wanted to visit her there. Her daughter was here now to take care of her mother.

"No, I don't believe you are strong enough to get to North Carolina."

"Can I go home to my house? I don't want to be here."

Most of my patients want to go home. Sometimes they mean the house they lived in for many years ... sometimes they mean their heavenly home. In this case she meant the former as it was more peaceful than the nursing home where she was.

"Well, I can't promise you that, but I'll see what we can do. In the meantime, we're committed to keeping you comfortable in body, mind and spirit."

"Does my daughter know how bad it is?"

Too often, families have a sense the end is near but fear talking about it with each other. The dying family member doesn't want to upset anyone and the other family members don't want to upset the dying person either. It's often an unintended conspiracy of silence which doesn't help anyone.

"Well, she's in the hallway with your nurse and it is our practice to be compassionately honest with people about what is happening. With your permission, I'll tell her what I've told you." My patient nodded.

 

The patient's daughter was clear about her mother's poor prognosis and I told her it was ok to talk about it with her mom. This patient did get home to her house for her final days and her daughter was able to be with her to the end. She lasted just 11 days in hospice care.

 

If there's anything I'd like to shout from a mountaintop it is to start talking about your end of life plans with your loved ones ... now! If you have trouble getting started, check out the Five Wishes web site at http://www.agingwithdignity.org/five-wishes.php. The site has the Five Wishes form which includes both the advanced directive for medical care and a medical power of attorney form. In addition, there are sections about what kind of comfort care you want at the end of life and what you want your family to know. The form is legal in 42 states and can be used in the other eight states in combination with state issued forms. There are videos and helpful books to assist you in having these conversations with your loved ones.

And now for something completely different ...

I can't believe I haven't posted anything since ... um ... March!! Mea maxima culpea!

It has been a bit crazy at hospice. We have four teams that consist of registered nurses, certified nursing assistants (who are worth their weight in gold!), social workers and chaplain(s). The (s) is because not every team has multiple chaplains and that would include my team. I'm the "lone chaplain" in our group and this can make things rather crazy. My patient load went from 32 to 23 in one month ... and that doesn't count the ones who "passed through" rather quickly. I had 11 deaths in the past month and multiple funerals at which I presided ... in addition to all the regular patient visits. So the blog went ... well ... AWOL!

I took a "comp day" off today since so many of my funerals were on Saturdays (last week was a graveside where I spent 20 minutes at the grave and 3+ hours in my car!). So I "did lunch" with my good friend Katrina Marie and then went to buy a toilet. Yeah, I know ... you are SO thinking "Wow! A toilet!!" What can I say - it's life in the fast lane.

I found a super low flow toilet on sale (bonus) at Lowes. Forget the extra $100 just to get it in bisque ... gimme the PWT (Plain White Toilet). Well ... after pullling the old one off I found some water damage to the wood floor underneath. (N.B. Yes, Virginia, you do need to raise the toilet flange with a spacer if you put in 3/4" wood flooring! Let's hear it for the original contractors who shortcut this one!). One more trip to Lowes to get a spacer kit and another wax ring and it all came together pretty well.

I am astounded at how a simple toilet swap caused all my tools (hand and power) to migrate into my house! I'm thinking it would take a crescent wrench (doesn't everything job require these?), a couple of screwdrivers, and a paint scraper (to get that nasty wax off). Eventually the Dremel made the migration (to cut off the extra long toilet T-bolts), the cordless drill ... until the battery went dead ... which cause the electric corded drill to visit along with the extension cord, then the hacksaw, then a few more screwdrivers, and the really BIG channel locks.

But ... it's a really cool toilet! High geek factor! Low water usage! I can just hear my water bill taking a nosedive. Life is good.

The Dalits Among Us

The term "Dalit" has roots in Sanskrit where the root 'dal' means "to split, crack, open." Dalit has come to mean things or persons who are cut, split, broken or torn asunder, scattered or crushed and destroyed.

The Dalits, also called the “untouchables,” “outcastes,” and most recently “slumdogs,” comprise nearly one quarter of India’s society, with population estimates of 250 million people. The term “Dalit” means “those who have been broken and ground down deliberately by those above them in the social hierarchy.” Dalits live at risk of discrimination, dehumanization, violence, and enslavement through human trafficking every day. By all global research and reports, the Dalits constitute the largest number of people categorized as victims of modern-day slavery.

While the ethnic Dalits refer to the people of India who are outside the caste system (hence the term "outcaste"), I've been thinking this is too narrow of a definition. Every society has their class of "untouchables," whether we want to admit to it or not.

As painful as it is to acknowledge, we have Dalits in America - and they are not immigrants from the Indian subcontinent. My work with hospice has brought me into contact with people I believe are the Dalits of our own society. I have visited patients who live in substandard housing infested with roaches, bedbugs and rats - not because they want to, but because they are poor. This housing (if you can call it that) exists right under the noses of those who would never be caught dead living under these conditions. These conditions and the people who live in them are invisible ... untouchable.

I have visited patients who are addicted and who come from families for whom addiction has been a way of life for many generations. These people are adults who likely began life addicted to drugs or with fetal alcohol syndrome. They didn't start life on the 50 yard line ... they started life so far back in their own end zone that they were in the parking lot of the stadium! These people are invisible ... untouchable.

I have visited patients who have mental illness. We fear "losing our minds," so we avoid them and hope that by doing so we can escape contracting a mental illness ourselves. These people are invisible ... untouchable.

I have visited patients whose families placed them in the care of facilities (assisted living or nursing homes) and do not go to visit them. Sometimes I hear the excuse that "it's too hard to visit" or "I can't stand seeing them like this" or "They don't even know I'm there." These excuses mask our own fear of growing old and our staying away allows us to indulge our own denial. These people are invisible ... untouchable.

All of my patients are dying. It's the BIG fear we all face but would rather deny. If we can move the dying away from us to a place like a hospital (where 75% of deaths occur) or a nursing home, then we can indulge ourselves with the illusion that we won't die. The dying are invisible ... untouchable.

Jesus told us that what we do "to the least of these" we do to him. We will be judged, as a society and as individuals, on how we treat the least among us - the Dalits.