I wanna take a minute to celebrate

They also won it all in 2007

I first proposed developing an end of life care team in January, and while my nurse manager and others have been completely supportive from the start, it's taken until today to get the official word out to colleagues with this announcement and recruitment email:

Hi Folks:

This is a lengthy email, but here are a couple of quick questions to decide if you should continue reading it -

1.Do you want to develop or enhance your you current skills in caring for patients and families at the end of life (EOL) as a central part of your clinical practice on 9C/D?

2.Will you commit to actively participating in a series of half-day educational programs to develop your EOL care skills?

This commitment will require you to read on different topics from a variety of sources in preparation for the sessions, actively participate in workshop exercises and group discussions, and engage in self-reflection through writing and story telling.

The expected outcome will be that you will be capable of providing expert EOL care; review and assess current policies regarding EOL care; help develop new policies and tools to improve EOL care on 9C/D; and be a visible and active resource to our colleagues regarding EOL care.

"The End-of-Life Nursing Education Consortium (ELNEC) project is a national education initiative to improve end-of-life care in the United States. The project provides undergraduate and graduate nursing faculty, CE providers, staff development educators, specialty nurses in pediatrics, oncology, critical care and geriatrics, and other nurses with training in end-of-life care so they can teach this essential information to nursing students and practicing nurses. The project, which began in February 2000, was initially funded by a major grant from The Robert Wood Johnson Foundation (RWJF). Additional funding has been received from the National Cancer Institute (NCI), the Aetna, Archstone, and California HealthCare Foundations, Open Society Institute, and the Oncology Nursing Foundation."

Jerry, a qualified ELNEC trainer, will direct a series of 3 four-hour sessions starting in the coming months to develop an EOL nursing care team specifically for 9C/D patients, families and fellow staff. The educational program is based on the ELNEC curriculum.

You can learn more about ELNEC here.

As a member of the 9C/D EOL Care Team following your training, you will provide direct EOL care to patients and families and also be a visible and active resource to colleagues when you are not directly assigned to a patient and family at EOL.

You will help with the early identification of potential ethics consults, and provide monitoring and follow-up on patients who die on 9C/D on behalf of the New England Organ Bank, the Bereavement Committee, and other related groups here.

Finally, you will help assess and develop tools, policies, and practice standards for EOL care on 9C/D; and help improve the overall quality and effectiveness of the EOL care we provide on our unit.

Jerry developed this project as a result of his own clinical interest in caring for patients and families at end of life, and based on his qualifications and professional development.

Jerry has been a nurse for 33 years. He earned a diploma in nursing from Catholic Medical Center in Manchester, NH in 1976; a bachelor of science in nursing from Boston State College (now Umass/Boston) in 1981; and a graduate certificate of special studies (CSS) in health policy from Harvard University in 1987. He is currently enrolled in the master of science in nursing program at St. Joseph's College in Standish, Maine.

Since 2002, his professional development has focused exclusively on EOL care through programs and training at Beth Israel Deaconess Medical Center, the MGH Institute, the Harvard Medical School Center for Palliative Care, the Harvard Center for Bioethics, and ELNEC.

Jerry's 14 years of clinical experience in critical care and hemodialysis has brought him into frequent contact with patients and families at end of life. He also spent 19 years in the information technology field, working with computer systems in clinical settings.

Jerry became an ELNEC trainer in October, 2008

The ELNEC curriculum is divided into 9 distinct modules -

Module 1 - An Introduction to Palliative Care
Module 2 - Pain Assessment and Management
Module 3 - Managing Other Symptoms at End of Life
Module 4 - Ethical and Legal Issues
Module 5 - Cultural Considerations
Module 6 - Communication Skills for End-of-Life Nursing Care
Module 7 - Loss, Grief, and Bereavement
Module 8 - Achieving Quality Care at the End of Life
Module 9 - Preparation and Care at the Time of Death

ELNEC trainers can adjust the sequence and specific focus of the individual modules to meet the needs of the audience. The first half-day program for the 9C/D EOL care team will include the content from the modules on Ethics, Communication, and Grief/Loss to accommodate several non-nurses who have expressed an interest in attending that session.

The two subsequent sessions will focus on content from the other modules specific to nursing practice.

Each half-day program will include a mix of lecture, case studies, class discussions, and media presentations. You are expected to prepare by reading the essential materials; to actively participate in discussions; and continue your learning beyond the classroom through self-directed reading and research, and self-reflection via journaling and story-telling.

At the conclusion of the program you will be recognized as being ELNEC trained, which includes a special pin for your ID badge or scrub stop. Note that this is not a certification or credential, but it is an explicit acknowledgement of your accomplishment. You will also earn CEU's for 12 contact hours of approved content, and become an essential member of a team dedicated to improving and maintaining the quality of EOL care on our unit.

If you're still interested, please contact via email to me , with a copy to Vince and Jerry.

In your email, please describe your own interest, experience, and goals pertaining to end of life care. It will be very helpful for you to include a brief story about a case where you were called upon to provide EOL care. That experience can either be a positive or negative one. In either event, indicate what you learned from it.

In the meantime, if you have any questions or comments specifically about this program, please ask Jerry via email or in person. For any logistical questions please contact me.

This email will help me understand the level of interest and allow me to plan appropriately.

Thanks for reading through to this point, and for your consideration.

Shaun

It's a big moment for me, personally and professionally.

And the Red Sox are looking pretty good heading into 2009 postseason play...

Update 10/2: Here's another reason for me to celebrate - I just got my first reader comment in quite a while!

A little respect

I met the Surgeon General. He offered me a cigarette.

Here's an email I got today from Christian Sinclair, a hospice and palliative care physician, and co-editor of Pallimed.

We have the December slot (for Palliative Care Grand Rounds) open if you think your Death Club blog would be up for it?

Great job writing so far. I have been meaning to highlight a few of your posts but have not gotten to it yet. I plan on submitting some for the upcoming PC Grand Rounds at Geripal.

I most certainly am up for it! I'm grateful for the chance.

I'm also glad to learn about GeriPal, and have added it to my blogroll.

And since I'm in a Rodney Dangerfield kind of mood...

Closer to dying, far from dead

Photograph by Richard Avedon.
Jacob Israel Avedon, Sarasota, Florida, December 19, 1972.

(this portrait is part of a series that the photographer made to record his father’s last years)

It's often difficult to keep track of exactly how things happen out here on the Innertoobz, but I'll try to summarize one recent chain of events:

Yesterday, I stumbled across a blog called Boston Health News (BHN). I honestly don't know how I found it, but I'm glad that I did - the writing's excellent, and the news is timely - and I promptly added it to my blogroll category, 'Healthcare, Death, Life, etc.' I also posted a brief comment over there, and subsequently heard back from the blog's owner, health and science writer Tinker Ready.

Tinker also sent along the following email:

Hi Jerry, I like your blog and I like the name, but I’m not sure others will get it. So I’m going to link to you under “End of Life Care.” Let me know if that’s a problem.

I think it’s an important topic in this age of death panel-baiting. Thanks for checking in.

Links are the figurative coins of the blogging realm, and I think it's really important to find like-minded bloggers, read and comment on their stuff, and exchange links to promote each others' work when the fit seems right.

Tinker also told me about another of her blogs, Boston Boomer News (BBN).

I checked out a brief story posted at BBN on September 11, "Doctors need to ask different questions as you age," which led me to an assessment tool developed by the Health Committee at the Boston Partnership for Older Adults (BPOA). The tool provides guidelines to primary care providers for conducting a comprehensive functional assessment of older adults, and there are versions available in English, Chinese.

So, the story thus far: Innertoobz stumbling --> find BHN --> exchange comments, email, links with link-minded blogger --> learn about BBN --> read story at BBN about an assessment tool for PCPs to use with older adults --> go to BPOA.

The BBN story and the information at BPOA reminded me of a magazine article on the subject of aging I had read, written by one of my own favorite health writers, the surgeon and author Atul Gawande. That led me to a search for Atul's own web site, and subsequently to the reprint of his article, "The Way We Age Now."

Gawande's article includes an account of time he spent with Juergen Bludau, the chief geriatrician at the Brigham and Women's Hospital's Center for Older Adult Health in Boston, as Bludau examined a patient.

I tried to think what could be accomplished in this visit. She was in good condition for her age, but she faced everything from advancing arthritis and incontinence to what might be metastatic colon cancer. It seemed to me that, with just a forty-minute visit, Bludau needed to triage by zeroing in on either the most potentially life-threatening problem (the possible metastasis) or the problem that bothered her the most (the back pain). But this was evidently not what he thought. He asked almost nothing about either issue. Instead, he spent much of the exam looking at her feet.

“Is that really necessary?” she asked, when he instructed her to take off her shoes and socks.

“Yes,” he said. After she’d left, he told me, “You must always examine the feet.” He described a bow-tied gentleman who seemed dapper and fit, until his feet revealed the truth: he couldn’t bend down to reach them, and they turned out not to have been cleaned in weeks, suggesting neglect and real danger.

Gavrilles had difficulty taking her shoes off, and, after watching her struggle a bit, Bludau leaned in to help. When he got her socks off, he took her feet in his hands, one at a time. He inspected them inch by inch—the soles, the toes, the web spaces. Then he helped her get her socks and shoes back on and gave her and her daughter his assessment.

So, what's my point?

Well, I guess it's simply that in paying such careful attention to the needs of patients and families at end of life, we in this field can overlook the people who are far from dead, but who may be getting closer to dying.

Hmmmm, that sentence doesn't seem quite right. I can understand how somebody might misunderstand it or become alarmed, but I'm not sure how else to say what I'm trying to say.

How about this - any of us may reach the end of our lives suddenly, from a serious accident or other trauma; or we may come down with an illness that results in a series of sharp declines, perhaps interrupted by periods of reprieve or temporary improvement.

But those are just two models. There's at least one other trajectory, one where the slow but inevitable march of time takes away the things that are important to us, but takes them away in such small increments that we don't really notice until a large pile of accumulated pieces gets our attention, or the attention of others around us.

I don't have any answers or advice about what to do with this thought just yet, except maybe to note it as another link in the chain that started when I was stumbling around on the Innertoobz and found Tinker Ready and her blogs.

One other quick note - Juergen Bludau's a member of the Board of Directors at BPOA. Small world.

From his final note

When I first wrote about Ted Kennedy's death, I anticipated the temptation to add to the essay in subsequent days. And I was tempted. And I did add to that initial essay.

Perhaps it's because I grew up in a very strongly Democratic household, the son of parents who lived their most formative years during the Great Depression and directly experienced the many ways FDR sought to alleviate their hardships, and who saw John F. Kennedy not only as an inspirational candidate and leader, but also as a neighbor from a city just an hour's drive from our own home.

Or maybe it's because the policy issue that Ted Kennedy has been most closely associated with, and will likely always be most remembered for, is the policy issue that I care most deeply about, and that has defined my entire working life so far.

In either case, I was pleased to hear the President include parts of a letter written to him by Ted Kennedy in last night's remarks to a joint session of Congress on health care. And I was moved by what Ted Kennedy had to say:

I saw your conviction that the time is now and witnessed your unwavering commitment and understanding that health care is a decisive issue for our future prosperity. But you have also reminded all of us that it concerns more than material things; that what we face is above all a moral issue; that at stake are not just the details of policy, but fundamental principles of social justice and the character of our country.

And so because of your vision and resolve, I came to believe that soon, very soon, affordable health coverage will be available to all, in an America where the state of a family’s health will never again depend on the amount of a family’s wealth. And while I will not see the victory, I was able to look forward and know that we will – yes, we will – fulfill the promise of health care in America as a right and not a privilege.

Then again, don't we all?

Yeah, I guess sometimes I DO act like a dick...

On one occasion when I was caring for a patient whose family had decided to redirect care, the new resident asked for directions on how to order morphine to manage the patient’s pain and dyspnea.

“Order a drip of 100mg in 100ml,” I replied. “And set the dosing at 0-10mg per hour, titrated as required to control symptoms.”

That’s what I told her to do because, well, I guess that’s how we always do it. I admit that wasn't a very well thought-out line of reasoning. And while it maybe wasn’t a particularly dick-ish position, it certainly set the stage for what followed.

A colleague, D--, overheard our conversation. She had recently completed a clinical practicum in palliative care as part of her nurse practitioner program, and was well-aware of my interest.

D-- approached me and asked, “Why are you doing a morphine drip?”

That’s when my hackles went up. That’s when the dick-ishness kicked in.

I gave her my best blank stare, and though I can’t remember exactly what I said in response, I do know that my internal alarms were screaming, “Hey! I know what I’m doing! This is MY patient! Go away!"

Maybe it would have been more helpful if my internal alarms had screamed, “Hey! Don’t be a dick! She might be trying to help!”

D-- said our hospital had recently issued new guidelines for managing symptoms at end of life, but I couldn't hear her through the closed door of my mind, and the screaming. I was using my internal energy to defend an indefensible position. Dicks don't listen.

The better angel of my nature began to assert itself, at least to the point of saying, "Well, if you've got something you can refer me to, let's see it."

I made a dismissive gesture with my hand. "Now go away."

But now at least a door was open.

To her great credit, D-- didn't respond to my ridiculously bad manners and utter lack of professionalism. Instead, she returned to her laptop, looked up the relevant guidelines, and placed a printed copy on my workstation as I retreated into the patient's room to compose myself.

I picked up the guidelines and reviewed the section on morphine dosing that applied to my situation. The guideline recommended starting opioid-naive patients on an intravenous dose of 2-4mg, given as needed, as frequently as every hour.

The guidelines stated that a continuous infusion of intravenous morphine was appropriate if the patient's symptoms were not well-controlled with the as-needed dosing, and if the patient required doses every single hour.

Instead of a vague parameter like "set the infusion at 0-10mg per hour, then titrate as required to control symptoms," the guidelines also provide mechanisms for setting an appropriate initial infusion dose, based on the previously-tried as-needed dosing; and for increasing the dose when required.

The wisdom of following established guidelines and using proven tools should be obvious. But as Betty Ferrell and Margo McCaffery say in their 1997 study, Nurses' knowledge about equianalgesia and opioid dosing:

Nurses are recognized as the cornerstone of palliative care. Yet, surveys of nurses' knowledge of cancer pain management reveal serious knowledge deficits that could adversely affect the care of patients with cancer pain.

This work is difficult enough, and there's always a lot to be learned. I've learned not to complicate it further by being a dick.

Thanks, D--.

Where to sit?

Sean O’Mahony, a palliative care doctor, with a patient, Deborah Migliore, in the Bronx.

Photo - James Estrin/The New York Times

I came across the piece accompanying this photo in a recent issue of the New York Times. It's titled, "At the End, Offering Not a Cure but Comfort."

It's the third in the series, "Months to Live." The first, "Fighting for a Last Chance at Life," appeared in May. The second, "Sisters Face Death With Dignity and Reverence," was published in July. (free registration required for access)

I highly recommend each one, and look forward to future installments.

I was most struck, however, by this reader comment:

I don't know if the picture at the top of the first page of the article was posed but one thing struck me. The medical personnel are on one side in opposition to the patient. It really made me feel the distance they were maintaining from the patient they were trying to help. Someone could move to sit beside her and perhaps the group dynamics would change and the information exchange would be enhanced. These seem like very caring team members, but little things can make a big difference....

It's an astute observation, and prompts a story of my own -

I once took over the care of a patient who was less than 30 years old, after a colleague who was working 7am-3pm left for the day. I've always worked 7am-7pm, and so was going to be with this patient for 4 hours. I had not previously cared for the patient or met any of the patient's family or other visitors.

The patient had experienced prolonged global cerebral anoxia the prior week, and was now suffering from the complication of profound autonomic dysfunction.

While the patient still had some brainstem activity, the overall prognosis was extremely grim, and had been from the beginning.

The patient's parents were divorced, but both had maintained an active presense. An older sibling was also closely involved in directing decisions on the patient's behalf.

A few days after the patient had been admitted, one parent and the sibling had advocated against a tracheostomy (trach) and percutaneous enterogastric (PEG) feeding tube for longer-term respiratory and nutritional support, saying that the patient would not have wanted to be kept alive under such circumstances.

The other parent held out some hope, and wanted to give the patient a chance for recovery, so the decision had been made to proceed with the trach and PEG.

The three family members had also agreed to revisit the patient's goals for care after one week, and that time had now arrived. The hospital's palliative care team had been consulted, and was going to meet with the family later that afternoon.

The parent who had held out the most hope was in the room when I took over, accompanied by a supportive sibling. They both sat to one side of the bed.

The attending physician and fellow from the palliative care team arrived at about the same time I did. I joined them as they entered the room to introduce themselves.

The parent wanted to wait until the patient's older sibling arrived before beginning any discussion, and anticipated that it would be at least another hour. The parent's demeanor was very guarded, almost angry. The two physicians gave me their pager numbers, and as they left I agreed to contact them when the sibling arrived.

There were now four of us in the room - the patient, the parent, the parent's own supportive sibling, and me. It was suddenly very still and quiet. I was the only one standing.

I felt a sob well up in my chest. I don't know why, exactly - maybe it was because the patient was not much older than my own two children, or because the parent looked so sad and lost.

I managed to stifle the worst of the sob, but it was all I could do to look at the parent's tear-filled eyes and simply choke out, "I'm so, so sorry."

I really meant it. There was nothing else that I could do or say. The parent nodded.

Then I squatted down besides the parent's chair. There was no other place for me to sit. We were all now looking in the same direction, towards the patient lying just above the level of our eyes in the bed several feet away.

A minute or two passed without a word, then the parent started to talk.

There's much more to the story, certainly. But the point I wanted to make, the point that was prompted by the reader comment, was simply that sometimes it's so important to sit next to somebody in order to actually be with them.

What it really looks like

Registered Nurse N. Von Reiter comforts Ramond Garcia as his health quickly declines at the Hospice of Saint John. Garcia had been admitted to the hospice after suffering a stroke.

from Caring for the Terminally Ill, a photo essay by John Moore.

I learned about this photo essay through Michael Shaw, one of my favorite bloggers, at BagNewsNotes, one of my favorite blogs. Shaw writes:

As a sensitive reply to the callous, two-dimensional and endless right-wing references to "pulling the plug," Moore's images capture the enormous cost -- in painstaking effort, intense emotions, agonizing choices, and yes, financial burden surrounding the terminally ill. Most significantly, he frames the end of life as a process and a life stage -- in contrast to its absurd framing as either a pre-paid ticket or somehow a determinative act.

Some shameless self-promotion

I'm blogging about my new grad school adventures at another site, and I submitted my first assignment for my first course today.

(polite golf claps)

Why, thank you. Thank you very much.

Anyway, my assignment was to identify five sites out there on the innertoobz, using a search tool. The assignment included the suggestion that the search focus on an area of personal clinical interest, so for me that obviously meant, you know...caring for patients and families at end of life and stuff.

Anyway, to make a long story shorter, you can find the post here. It's chock-full of good information for anybody who shares my interests in this field.