Saturday, October 31, 2009

Failed Kidneys, Hangnails, Living, and Dying

There's some interesting discussion going on at two fine EOL/palliative care blogs focusing on the subject of hemodialysis and quality of life.

The posts by Alex at GeriPal and Drew at Pallimed were themselves prompted, in part, by an article in a recent issue of the New England Journal of Medicine that explored the impact of hemodialysis on the functional status of elderly patients.

I re-entered clinical practice by obtaining a position in an outpatient hemodialysis setting in 2002, after having spent the previous 19 years working with information technology in health care. It was a very challenging and rewarding setting, for lots of reasons. I think I'd probably be practicing there still if the pay was better.

A few years later, I was recruited to help develop online content for an associate degree nursing program. One of the units that I wrote dealt with diabetes, and I drew upon my experiences in hemodialysis while compliing that material. Here's a section from that unit:

His Death Began with a Hangnail

Of the people I introduced to you earlier in the unit, I was closest to Sid (not his real name). I always worked the shift that he came in for treatment, and he started on dialysis just a few months after I began working there.

Sid was relatively young, the divorced father of a daughter who herself was married with several children and who still lived within the state. His ex-wife had died of pancreatic cancer the previous year, and even before her death the family had reconciled to some degree.

Sid had a heart attack and triple-vessel coronary artery bypass about ten years earlier, as well as a more recent below-the-knee amputation of his left leg. He walked well enough with a prosthesis, and did not require a cane, though his activity tolerance was poor and he became winded after climbing a few stairs.

Sid now needed hemodialysis for his end stage renal disease, which itself was the result of extensive diabetic nephropathy.

I later learned from his daughter that Sid had at first been very anxious about coming to dialysis, even though he had already been through more hospitalizations and surgeries than most people. She also said that he quickly came to enjoy and value his time at the center, in part because it brought him in contact with the same group of patients and staff, three times each week.

That’s one of the advantages of working in this setting - consistent contact.

From the point of view of his dialysis treatments, Sid’s care was pretty routine and uneventful. He experienced very few of the common side effects of treatment, such as symptomatic hypotension and cramping, and his overall clearances (a measure of the effectiveness of his treatments) were generally good.

One day as I was initiating his treatment, I noticed that Sid had a small bandaid around the tip of his left ring finger. There was some slight redness under the proximal edge of the bandaid.

"What’s up with that?" I asked. "Oh, I had a hangnail the other day and pulled it out," he replied, showing me with a gesture how he had brought the cuticle to his mouth and bitten it with his front teeth.

After his treatment was underway, I asked him to remove the bandaid so I could take a closer look. He had a small ulceration, about the size of of a grain of rice, at the base of his fingernail, with redness and swelling down to his first knuckle.

I contacted his nephrologist, who ordered a dose of vancomycin for the final 30 minutes of his treatment. That was pretty much our standard protocol for dealing with infections in that setting - intravenous vancomycin, gentamycin, or tobramycin one or more times each week, with lab measurements of peak and trough values to maximize the effect while minimizing the dose.

But over the course of several weeks, Sid’s cellulitis slowly and inexorably made its way down his ring finger and onto his hand, where it affected his adjacent fingers and continued to his lower arm. The inflamed areas in turn became necrotic, until his entire left hand and forearm were hard and discolored.

Surgical intervention was ruled out, as Sid was deemed to be an unacceptably high risk candidate because of his compromised cardiac status - his left ventricular ejection fraction was measured at about 10% of total filling volume. Medical treatment of his infection was not successful because of his extensive peripheral vascular disease.

Also, because of his poor peripheral circulation, Sid had not had a successful AV fistula implanted for vascular access during his dialysis treatments. So, over the course of several months he relied on a tunneled double-lumen central venous catheter (CVC) as the portal for his dialysis treatments. CVC’s carry a high risk of infection, particularly septicemia, and one night during his treatment Sid developed shaking chills and a fever of 103, requiring immediate hospitalization.

I never saw Sid again after the ambulance picked him up that night.

As I later learned, the surgeons on Sid’s case presented him with the option of having his entire left arm amputated at the shoulder. They were candid with him about the fact that he might not survive the surgery because of his poor cardiac status.

They also noted that he would likely need to have his right arm amputated, as it too was becoming ischemic.

Sid decided that life without one or both arms was not worth living. He chose instead to have his CVC removed and his dialysis treatments stopped. He moved in with his daughter and obtained the support of hospice services for the last two weeks of his life.

The Rest of Sid's Story

The folks who initially supported the preparation of this material suggested that I provide some sort of summary paragraph to the unit. They felt that without such a summary, you might feel that you've been left hanging.

Fair enough, but after thinking about it I guess there are plenty of times where that's exactly was does happen - we're left hanging. We step into a situation that's probably been going on before we arrived on the scene (or before the patient's presented to us), we do what we can and need to do, the patient moves on, and we never know how it all turns out.

Can you live with that? It's a rhetorical question. You'll have to live with it, at least sometimes.

In the case of Sid, we were able to obtain bits of information from the unit's social worker, who herself obtained some information from the hospital's social worker, who helped to direct Sid's final placement and home care. We learned what I wrote in the unit - that he had taken himself off dialysis and had gone to his daughter's home.

A colleague on staff brought in a copy of Sid's obituary (he lived in the next town from where the dialysis unit was located). A couple of my colleagues went to the funeral home, though I did not. Having dialysis staff attend patient wakes and funerals is actually something that happens pretty frequently. As I mentioned earlier, there's a strong sense of community and continuity in this setting. While this community and continuity also raises issues and challenges regarding professional boundaries, there's often the chance to "close the circle" and not be "left hanging," and it's a valuable opportunity.

And just so I don't give you the impressions that working with patients who have end stage renal disease is relentlessly dreary, there are also some "happy endings," like when a patient gets a kidney transplant. In such a case, we all celebrate with them.

And Sid's decision and outcome, while sad, wasn't dreary to me. He took control, and made the critical decisions himself, knowingly. He also spent his final weeks with his daughter and grandchildren, in the comfort of their home, with enough medication and support to be without pain. Isn't that how we'd all like to go?

We got a card at the unit from Sid's daughter, thanking us for taking care of her dad in what turned out to be his final 5 months, and letting us know that he really came to enjoy his time at the unit. I sent his daughter a sympathy card of my own, and told her that I was glad for the chance to meet Sid. He really was a nice guy.

We also spoke individually with each of the other 11 patients who shared Sid's treatment time, so that all of us could acknowledge what had happened. That's just another part of the sense of community and continuity that I mentioned earlier.

So, the folks who worked with me on this unit had a point - I hadn't told you everything in this instance, and I had indeed risked leaving you hanging. So there it is, for now.

Saturday, October 24, 2009

"It's not just a body..."

Robert Bouchie (far left) leads a moment of silence in the anatomy lab before a body is cremated and returned to the donor's loved ones. The pine box also contains notes of thanks from the students.
- photo by Kalman Zabarsky for Bostonia

Our family is the first on either my wife's or my side where every member has at least a bachelor's degree, so we get a fair number of the kinds of alumni magazines at our home that we never saw as kids - including from UConn ("Go, Huskies!"), Harvard ("Don't be so smug."), UMass/Boston ("The campus that political corruption built."), and the Massachusetts College of Art and Design ("Home of the Fightin' Picasso's - Go Pablos!").

My wife went to grad school at Boston University ("We don't have a slogan."), and while idly thumbing through the Fall, 2009 issue of Bostonia I came across Caleb Daniloff's wonderful article, "Parting Gifts." The subhead says, "Robert Bouchie adds one final lesson to the training in the med school's anatomy lab: how to honor the dead."

Bouchie is a BU alum and former football defensive lineman. He worked as a pharmaceutical salesman before earning a degree in mortuary science. He has directed the morgue at the Children's Hospital Boston, and now manages the anatomy lab at BU's School of Medicine and coordinates the school's anatomical gift program.

The online version of the article includes a video featuring Bouchie and the work in his lab, where he tells the students that each person on the dissecting table is, "your first patient, your first instructor."
There are two philosophies in anatomical donations...sometimes the people that have the position that I have, they don't want to sensitize the students, they don't want them to buy into that this was a person that was a friend, father, neighbor, grandparent. They want the students to just view it as a a tool.
I'm from the other side of the street. I expect them to care as much as I do. It's not just a body in front of them. It's a real person, and they should never lose sight of that fact."

Wednesday, October 21, 2009

In the weeds

Part of my garden, before the frost

Time flies, especially when I'm trying to write for this blog on a regular basis. It's been a month since my last post, and I've been caught up in too many other matters to turn my attention here. I want to change that, because this blog is a priority, as is keeping current and finding new bloggers who're also writing about end of life care.

A substantial chunk of my recent writing energy went into completing the third assignment for my class on information systems in healthcare. Sure, it's not a huge paper by any standards - but most of my time was spent on trimming it down. I find that cutting words and focusing a theme is harder than trying to say lots about more.

I've also been working with my daughter, who graduated from art school and is trying to put together some ways to earn some money doing what she loves. I'll post a link to her site when it's ready.

I'll be joining some colleagues on Thursday to participate in one of the introductory ELNEC modules. There are 30 nurses from all areas of the hospital who've signed up for the 3-session, 9-module course, and I've been asked to help answer a question that often arises, namely, "What can we do to involve our colleagues and improve end of life care on our own unit?"

I'll be conducting the module on ethical/legal issues during the final session in early November, and will also post the materials and notes here at that time.

This is the hospital-wide ELNEC course, and not the ELNEC course and team building program that'll take place on the neurosciences ICU where I work. Three colleagues have so far stepped forward to join that effort, and there are three others that want to talk with me about it more. I expect to formally start the program right after the holidays with 6-8 members.

Finally, I just want to mention the excellent Palliative Care Grand Rounds hosted earlier this month by the bloggers at GeriPal. This series has been a great opportunity to catch up with, or learn about, the many fine bloggers who're working in and writing about palliative care and end of life matters.

I particularly want to recommend the series, 'A Matter of Life and Death,' at Flyp, an interactive online magazine, that was highlighted at GeriPal. Flyp uses multiple media to tell the stories. It's a great example of what's possible out here on the innertoobz. Check it out.