Sunday, December 31, 2017

Unconditional love

I didn’t record the date or time, but in late 2015, at some point along the final segment of Jeanne’s trajectory, I met JJ, Hospice Therapy Dog.

We didn’t meet in the traditional sense. JJ lived on the other side of the country with her human assistant, Tracy. I had turned to Facebook as a diversion and source of support the previous summer and, one day, she simply appeared in my news feed - I’m not sure why or how, but in any event, JJ changed my life.

I had started posting a daily picture to Facebook while Jeanne and I were on vacation in 2014. Close friends and family knew about Jeanne’s illness, but several years earlier we had agreed to keep things private, and the photos were about the beauty of Buzzards Bay, and our food adventures.

I soon joined a group, ‘Clouds that don’t look like anything else.’ Members of the group post pictures of clouds (duh), and anyone who tries to interpret their appearance (“That looks like a duck!”) is met with, “No, it’s a cloud.”

I began scanning the sky for interesting clouds to share. Posting a photo, and looking at the clouds others posted, became something Jeanne and I could enjoy together, a simple way to travel the world and follow others from the familiar comfort of home.

I also started reading posts about serious illness and care at end of life, which is likely how I came to meet JJ. Tracy is a certified pet therapist and hospice nurse, and had been posting in JJ’s voice about their work for some time when a short video of theirs went viral.

The first moment I saw that video, I knew things would never be the same - for me, or for anyone else who needs to learn more about care at end of life, or who might be fearful of what death can look like.

In less than 2 minutes, JJ shows caring and presence in a way that’s as helpful and profound as any of the many fine books that have been written about death in recent years. Maybe more so.

Tracy and I corresponded through Facebook comments and Messenger, and she and JJ quickly became essential members of Jeanne’s and my care team right through to the end. She laughed when I said JJ would be bigger than Atul Gawande, but when she was approached to write a book, I patted myself on the back for being so prescient.

Several years ago, I harbored the fantasy that working in this field would somehow immunize me from having to confront serious illness in my own circle, or from experiencing the pain of losing someone close to me. How foolish.

The simple fact is, we all die.

In December, 2016, JJ was diagnosed with lymphoma, and Tracy shared updates on her treatment and condition through the year. JJ retired from hospice work earlier this month, and on Friday the 29th she died peacefully, in the company of Tracy and several others closest to her.

Tracy has graciously allowed me to include a portion of their viral video in one I developed on caring for patients and families at end of life, in the section about communicating with someone whose cognition is declined or absent.

Here’s JJ. Good work, dog <3

Sunday, December 24, 2017

Thursday, November 30, 2017

Prodrome to delirium

I'm still working on the set of instructional videos about caring for patients and families with advanced dementia at end of life. Progress has been much slower these past several weeks, and I finally sent off the latest script (#11 of 12) to my awesome BBC-accented narrator, Adam.

The complete version of this video runs about 15 minutes. It includes a discussion of several validated delirium assessment tools, as well as ways to prevent delirium from occurring in the first place.

Here's a 3-minute version, not narrated by Adam. It introduces some important work by folks at the Center for Hospice and Palliative Care in upstate New York, trying to uncover clues that can indicate delirium may be imminent.

More on The prodrome to delirium - a grounded theory study (free!) 

More on delirium in Death Nurse:

Still more delirium
Something about delirium
Something else about delirium
Some more about delirium  
First steps to comfort: A-T-E-N-T
Again with the delirium

Friday, November 10, 2017

The ARC of EOL - a poem in progress

Not the best way to land a plane...


I haven't posted anything here in a month, not the sign of a good blogger.

I've got explanations and excuses, but that doesn't matter, because the point of blogging is to blog.

Anyway, I've been working on more delirium material, along with a new 'Hospice 101' kind of thing. I've been playing with the idea of trajectories at end of life, and wonder if a cartoon-and-poem combo would help get some points across. Here's what I have for the poem part, so far:

Life is like an arrow, airborne,
let loose at birth,
we live,
we fly ...
… then land.
And die.

For most of human history,
people usually died
from a sudden short decline.
Infants died at childbirth. So soon.
Mothers, too.
Germs were invisible, first aid grim.
Some passed 30, 40, 50, 60.
Not most.
Death was neither friend nor stranger.
Death was always near.
That doesn’t mean we liked it.
But at least we understood.

Now that’s changed.
Life is longer now.
Death is distant, hidden, feared.
We are not prepared.

Life is longer now. It’s better.
Florence Nightingale brought modern nursing. Thank you for intelligent care.
Doctors learned to wash their hands.
X-rays, penicillin, vaccinations, insulin, anesthesia, transfusions, transplants, heart lung, ventilators, ICU, CPR…

Please see me!

… hold on. There’s more.
Hospitals got big, then bigger.
Hospitals are everywhere.
Now we have a war - on cancer!
Bucket challenge.
Fight it. Beat it. Fix it. Cure it. Wear a ribbon.

Make it go away!


Tuesday, October 10, 2017

When your hospice medical director is a useless idiot...

I once had the misfortune to attend a series of hospice interdisciplinary group (IDG) meetings featuring a retired internist moonlighting as a hospice medical director. He was bound by the 3-S credo, “Show up, shut up, and sign.”

In other words, the guy had no business being in the role, but the organization required his uninformed acquiescence, since their default operating mode was, “Just sign them on, we’ll figure out the rest later.”

Meanwhile, the clinical staff were without guidance and out of control as patients and families got wildly inconsistent, and generally lousy, care. The clinical staff lurched from crisis to crisis, and the most attention on any given day went to the patients and families who were in the deepest trouble.

In the course of each painful meeting, case managers would inevitably describe patient behaviors like, “Restless and agitated,” “Wife says he’s more confused,” “Awake at night, trying to get out of bed,” etc.

Whenever that happened, I’d gently try to suggest that they were describing behavior consistent with delirium. The response was usually a blank stare or pushback. “No, he’s just confused.” “The family doesn’t want to use haldol.” “I told them to give him some ativan.”

It was a troubling situation.

One day at IDG, after yet another disturbing report on a patient and family deep in suffering, the medical director turned to me with a smile and said, “I think this is where Jerry starts talking about delirium again.”

Ha, ha ha.

Maybe my experience was an outlier, and no other hospice employs a physician who doesn’t know anything about serious illness and care at end of life, or if they do, he or she isn’t reluctant to pick up a journal or do some basic CME.

I hope so, anyway.

However, if you find yourself in such an unfortunate situation, and have the kind of interpersonal tact that can allow your helpful suggestion to be heard by a physician, consider turning them on to the following two videos featuring David Meagher.

Part 1 (10 minutes)

Part 2 (19 minutes)

Thursday, October 5, 2017

Death talk, gender, and what Susan taught Atul

I spoke with a friend recently about her parents. She’s been closely involved in their care, including as their designated healthcare proxy.

She talked about her roller coaster marathon over the last several years - finding a continuous care retirement community (CCRC), helping them make the transition, navigating the healthcare system as their needs have changed - particularly her father’s, and trying to anticipate what happens next.

She admits her privilege and good fortune - they’re just one town over from her home, money is not a problem, their CCRC experience is positive, and she’s able to enjoy time with them .

Her greatest difficulty has been in dealing with what she feels is the growing disconnect between how she sees her father’s health changes, and his own perceptions and understanding. To make a long story short, she’s aware of significant decline, is concerned about his safety, and wants to talk with him about further advance care planning. He thinks things are fine.

In the course of our conversation, she came around to the idea that his strong denial was serving a purpose and is unlikely to change, at least for now. “He’s always been big on control, and this is no different,” she admitted. Her current plan is to carry on and continue her attempts to initiate a discussion with her dad, using the framework to identify meaningful goals of care described in this short video featuring Atul Gawande:

Gawande channels Block - Four essential questions to help identify meaningful goals for care (adapted):

  1. What do you understand about your disease and what it means for the future?
  2. What’s your greatest fear?
  3. What’s most important to you?
  4. What tradeoffs are you willing to make, how much suffering would you endure, if it offered the possibility of more time?

As luck would have it, shortly after the conversation with my friend I learned about this article. It describes a study done in Iceland that identified significant differences around “death talk,” based on gender. Specifically, the study found that men are more reluctant than women to initiate a discussion with a chaplain about their impending death, and also less likely to enter into such a discussion even when the chaplain provides an opening using “non-provocative evocation methods.”

A few key paragraphs:

  • “Every day, health care professionals worldwide face difficult discussions with terminal patients and do their best to conduct them in the light of their clinical training and clinical and personal experience.” 
  • “The need to explore gender specific communication style for expressing emotion has been explored in several studies. The results suggest that men’s expression of emotion may have been misinterpreted using women’s emotions as gold standard, thus sometimes interpreting men’s emotional signals as absence of emotion.”
  • “The importance of “being with” dying patients is emphasized in Saunders’ pioneering work. However, because of lack of time and adequate training in having discussions with patients about their impending deaths, health care personnel may find it hard to live up to these expectations.”
  • “...women appeared to be more at ease with expressing and discussing emotionally difficult subjects. Although most men may have similar needs to participate in emotional discussions, they seem more likely to need encouragement to do so.”
  • “The main rule for high quality clinical communication is to always listen actively to how patients respond to open-ended questions and to reflect their answers back to them to offer a way to have a discussion on emotionally difficult issues, like their own impending death. Findings from a clinical study assessing acquisition and retention of evocation skills indicate that, although the theoretical principles behind clinical communication methods like Motivational Interviewing may be relatively simple and easy to understand, it takes considerable time and supervised training to achieve competency in the method.”
Talking beats not talking, though talking with men may be more challenging. Having effective therapeutic conversations requires skill and practice. This work is hard.

Wednesday, September 27, 2017

Quick take: delirium + clinical trials

My hat’s off to Drew Rosielle for his recent post about delirium at Pallimed, and for this passage in particular:

“...delirium is an international health crisis, it is real, it can be devastating (lead to permanent cognitive changes), leads to far worse outcomes for our patients (longer hospital stays, not being discharged home), costs billions of dollars, sucks shit for the patients and families going through it, and we don’t have a real inkling about actual, effective drug treatment for it.”


Rosielle’s focus is the report in JAMA on a study conducted at MD Anderson Cancer Center that compared haloperidol + lorazepam versus haloperidol + placebo as treatment for hyperactive (agitated) delirium at end of life. It’s a worthwhile read, and one that I’ll return to in a later post.

His overall concern is the lack of firm guidance for the treatment of delirium with drugs based on double-blind randomized clinical trials (RCT), the gold-standard for evidence-based practice. So, here’s a brief discussion about clinical trials, and about another less-rigorous way that we can know our actions are based on something more than crazy ideas shared around a late-night campfire.

Saturday, September 23, 2017

Can one number tell us if this hospice is any good?

Boo Boo loves data

How would you respond to someone who asked, "What single factor can help me decide if this hospice is any good?"

I posed that question to Boo Boo, and she replied without hesitation, "First, I'd ask the agency how many patients and families they usually care for who live in their own homes. I think they call it 'the average daily census for home based patients,' or something like that. It's a different group of hospice patients than those who reside in nursing homes, assisted living facilities, hospice houses, or inpatient hospice units. Anyway, I'm looking for a number, very simple."

She continued, "Next, I'd use this handy little chart to find how many full time hospice RN case managers (FT RNCM) are needed to care for that number of patients and families. These are the nurses with an important 40-hour, Monday through Friday job. An RNCM is the glue that binds the rest of the team. Let's say the agency tells me they usually care for about 300 patients and families living in their own homes. The corresponding number to 300 is 28, so I'd ask if they had 28 full time hospice RN case managers on staff. Their answer to that one simple question could say a lot about whether or not the hospice is any good."

Boo Boo soon fell fast asleep. Here's the chart she was talking about:

figure 1

Some background

A colleague and I had a conversation recently about staffing, specifically the ideal average caseload for a full time hospice RN case manager working with patients and families in their homes.

My colleague and I met several years ago, at the hospice branch of the home care service group of a large health system. Many of our patients were referred from the system's two comprehensive cancer centers, so acuity was generally high, and the length of stay was often brief. We were pretty busy case managers. The health system sold off their hospice in 2011, and we went with it for a while.

Our discussion led us to the website of the hospice industry trade group, the National Hospice and Palliative Care Association (NHPCO). Their monthly member newsletter from March, 2011 includes a cover story on the agency staffing guidelines they developed. (pdf)

We followed a link at the NHPCO website, but ended up at a members only page, so we couldn't access the staffing tool and supporting information.

We also tracked down a 90-minute workshop at their management and leadership conference: "New NHPCO Staffing Guidelines - Methods and strategies for success," and even found a 29-page document with 57 PowerPoint slides from the presenters.

A handout like that is probably the single worst way to share important information, but I digress...

We read through the bullet points and truncated phrases and arrived at a bottom line: the NHPCO staffing guidelines from 2011 recommend a caseload of between 10 and 13 home-based patients per FT RNCM, or 10-13/RN.

figure 2 - from page 20 of the handout

figure 3 - from page 21

figure 4 - from page 22

figure 5 - from page 24

figure 6 - from page 26

The guidelines include several factors that may increase or decrease the suggested caseloads, like whether or not RNCM's also admit patients or provide off-hours coverage, and note that staff turnover can also affect caseloads.

These numbers and those conditions made sense to us both, because they're consistent with our own experience. A caseload of 9 to 13 patients allows for efficient and effective quality care, including documentation and collaborating with the team. We seldom, if ever, had fewer than 10. Things get harder to juggle after about a dozen.

It can take up to 4 hours to conduct and document an admission, time which could otherwise be spent visiting two homes, or maybe even three.

Responding to off-hours events interferes with the RNCM's Monday-Friday responsibilities, no matter if the response is by phone or in person, and regardless of how often they provide the off-hours coverage.

High staff turnover means more work for RNCMs who must fill the holes left by the departed while also mentoring the new nurses, if any.

It can be a real mess, and often is. That was the upshot of the conversation with my colleague, anyway.

Boo Boo crunches the numbers

When she woke up, Boo Boo explained how she developed her chart.

"I based it on an average caseload of 11 patients for each FT RNCM. That's the median in NHPCO's guidelines (see figure 2). I just divide the average daily census (ADC) by 11, to get the number of FT RNCM's needed."

"I'd have to think hard about working with an agency that didn't have enough staff to handle their census. Maybe there's an explanation, and I'd be open to hearing more. But I wouldn't want to end up on the short end of a stick, if you know what I mean."

Boo Boo also pointed to the document, "Suggested Questions to Ask When Choosing a Hospice," at the Hospice Compare website (pdf). "They suggest some interesting questions for patients and families to ask a hospice. Two of them are really astute: 'Will I have the same hospice nurse?' and, 'How many patients are assigned to each hospice nurse?' That last one gets right to the heart of FT RNCM caseload."