>Seattle Air

Posted on September 21, 2009 by Risa Denenberg

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Today I noticed the air in Seattle. It’s soft, spongy, almost silky. As waters in different places differ to the mouth, local air has a unique sensation against the face, upon bare arms. The soothing Seattle air makes me happy I moved here. It’s the kind of surprise that keeps me plodding on through my life, taking risks, hoping for the salvation of discovery. Not same-old, same-old every day, but something entirely fresh and welcome to consider.

Yesterday, in yoga, during shavasana—the corpse pose that conclues every yoga class—I spun off and left my body. This is not an experience I have often, maybe once in a decade. I don’t know if most people do or do not have out of body experiences, but in my experience they can be quite seductive. Floating away from the body, hovering nearby, observing all, fully at peace. As the singing bell sounded, softly, softly, a little louder, a little louder, I knew that I was much too far away to re-enter gently. I crashed back into corporeality. There was a dense and painful impact in all of my senses. I was unable to wiggle toes, roll on my right side, and sit up. I felt totally miserable because for a moment, I’d had the sense that I could be alive without my body, without the cumbersome, achy, pain of this body. And yet, I know that I don’t really believe that the consciousness I know as “me” will survive the life of this body. Recovery, re-entry took a while.

Later, continuing with my plan for the day, I picked up Pete from the nursing home and we went shopping at the Village Thrift Shop, Pete making good progress with his cane, 79 years and more spry than I expected. And I needn’t have worried that we would have trouble finding the place. As we circled a promising perimeter, Pete would say, “hmm this looks so familiar” and then lean out the open window and ask for directions willy-nilly at every corner, until someone told us how to get there. I got a parking spot right in front of the store. Pete bought a winter coat and scarf, a spiffy blue sweater, and two pairs of shoes. Very good taste, I thought. We stopped at Rite Aid and he picked up underwear and socks. In less than 90 minutes we were back at the nursing home, Pete humming as he put his new things in the half closet he shares with a roommate.

Here’s the thing. Pete moved to the nursing home from the hospital and never once got to go back to his apartment and get his things. He has been without shoes for 5 months, shuffling along in plushy slippers that someone at the home found for him. No one—and this includes me—thought to take him shopping for basics. He had money, but no wheels. He was pretty happy about the outing. To tell the truth, so was I. It’s like the soft Seattle air. The sensation of weightlessness for a moment. The idea that there are discoveries yet to make. Alongside the drudgery of the body, decaying day by day, until it goes. I think it might be enough.

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>Reform? No. I still want Revolution.

Posted on September 12, 2009 by Risa Denenberg

>So is it accepted that health care reform should not include “undocumented” people living and working in America? Why not? I can’t understand any of this mess. I thought the point was not insurance reform–what a joke–but making sure that each person in this country has access to health care services. To me that means every man, woman, child. Anything less than that is just not good enough, I say. I hate to be confronted with the selfish faces of those lucky enough to have access by private insurance or a government program, but who are not crying out for universal health care. As if it is OK to just leave a huge population to fend for themselves without health care. Without a flu shot. Without a mammogram. Without a doctor or nurse who knows their names. Without pain relief or treatment for diabetes. Without any choice but to show up in the emergency room with pneumonia or a broken wrist or an ear infection. Or to die. What’s that about, if not pure selfishness?

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>Palliative Care Grand Rounds: August 2009

Posted on August 3, 2009 by Risa Denenberg

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Welcome to the seventh issue of Palliative Care Grand Rounds, a potpourri of insightful, relevant, challenging, oft-times poignant and always well-written postings from the blogosphere. PGR appears the first Wednesday of each month. As your host for August, I admit I have given you a considerable assignment for your mid-summer reading. But there were just so many blogs I wanted to share with you! I don’t know where to start! And if you enjoy what you read, don’t forget to leave a comment of appreciation–and tell ’em where you heard about their post. (And please forgive my inability to to get the formatting right!)


A number of blogs this month have taken eloquent exception to the outrageously stupid characterization by certain Republican politicians that having end-of-life conversations with patients is tantamount to euthanasia. In his blog, David Fisher, a family physician, does a good job of explaining the proposal to reimburse physicians for having an “advance care planning” discussion with their patients once every 5 years. Fisher even had a run-in with Rush Limbaugh on the topic! Marya Zilberberg, a hospital intensivist, offers a frontline corrective to the Republican nonsense in her blog, What’s really killing grandma at Healthcare, etc. Her typical scenario: “The family when consulted of course opts for “everything” without a clear understanding of what that “everything” entails.”

Buckeye Surgeon weighs in too, with feeling, “I can’t tell you how many times a month I find myself seeing a demented patient in the ICU on pressors, intubated, gorked out, sustained solely by machines and no one knows what to do, no one in the family is prepared to “make the big decision” because no one ever thought to ask the patient when she was lucent: what do you want us to do when you’re deathly ill and are unable to make decisions for yourself?”


In his blog, Medical Futility, Thaddeus Pope reflects that patients want guidance from their physicians, pointing out that there is nothing wrong with end-of-life persuasion. And certainly not least, Drew Rosielle, founder of our beloved Pallimed, chimes in with this advice:“I say Be Out, Be Proud, Superb End-of-Life-Care for All – No Apologies!” I agree!

David Cox, blogging at Open Salon, and not a healthcare provider, doesn’t mince words when he offers his take on how the wheels of healthcare spin along regardless of the condition of the patient. Describing his father’s death, he says, “The surgeon’s bill for the operation was over $35,000, and along with the hospital’s bill the total was over a hundred thousand. All to keep a dying man alive for twelve more hours.”


But if you’re not convinced (preaching to the choir, here), Martin Welsh, another doctor, now also a patient with ALS (Lou Gehrig’s disease), gives a moving narrative of what it means to think about end-of-life issues when he says, “Today, I find myself facing the kind of ‘quality of life’ issues I discussed innumerable times with patients.” Speaking of ALS, hospice doc Bob Sawicki found himself uncharacteristically watching ESPN on July 4th, appreciating a tribute to Lou Gehrig, 70 years after he made his famous farewell speech at Yankee Stadium. His meditation that “not much has changed” is quite moving.


GeriPal (a blog combining geriatrics and palliative care) has posted two recent blogs about hospice care in the elderly. Nurse Practitioner Patrice Villars critiques the “morphine-and-lorazepam-fix-everything” mentality and reminds us that end-of-life care for the elderly requires a special set of skills and knowledge. Physician Eric Widera rants about innappropriate medications in the hospice setting. His “top 3 potentially inappropriate drugs for use in hospice patients” are: colace, statins, and multivitamins. Physician Roseanne Leipzig wholeheartedly agrees that the health care system deserves failing grades in geriatric care, in her Op Ed piece in the NY Times. Her story of “killing grandma” is the real deal.

Caregivers have a lot to teach us about palliative care. In Alzheimer’s: A Caregiver’s Story, Open Salon blogger, aim describes being a paid caregiver as a labor of love: “I could not have done this job without allowing myself to fully love him. Now I’m learning how to let go, painfully, one step at a time.” In Words from a Witness, Kristin tells of reaching an emotional breaking point as a caregiver for her mother, watching her mother languish in a wheelchair with escalating pain. Hospice volunteer Monique, also blogging at Open Salon, reflects in Visits with Mr. ‘M’ on the social function of smoking at the nursing home. And, if you haven’t yet discovered Gail-Rae’s blog, I urge you to visit The Mom and Me Journals. It’s a thoughtful, intense, creative, and well-researched gem that you will want to come back to again and again.

Here are some stories about how different people approach dying. I adored this story of the Sisters of Saint Joseph, living in a convent in Pittsford NY, who approach caring for each other at the end of life with the equanimity and faith that was undoubtedly the original impetus for hospice. As Sister Mary Lou Mitchell explains, “We approach our living and our dying in the same way, with discernment.” And in Pallimed Arts and Humanities Blog, we hear the story of musician and songwriter Warren Zevon who was diagnosed with mesothelioma and refused any treatment, preferring to finish his final album in the time he had left. In her blog The Good Death, Jessica Knapp shares an email with us from a woman diagnosed with stage IV rectal cancer who, following surgery in 2005, followed a palliative care approach rather than any further cancer treatments. “Had I opted for chemo, followed by liver resection, and then hepatic artery infusion, I would have been long dead”, she muses.

On to a few blogs by those angels, hospice nurses. With her usual wry humor, Deathmama tells us about a drunken tuck-in, a nurse fight (sorry, no fistacuffs), arming with pepper spray for psychotic house calls, and Michael Jackson’s death, all during a week of 9 deaths. A bit less jaded, NurseTeeny, still a nursing student, explains her intention to become a pediatric palliative care nurse. Teresa Yarbrough, in Alive Hospice Blog, tells us the about the inspiration that brought her, roundabout, to hospice nursing. And hospice RN, Sarah Skiba, in her blog, A Journal of a Hospice Nurse, writes about patients who ask “why is it taking so long to die?” Neuroscience ICU RN Jerry, in his blog Death Club for Cuties (gotta love that moniker), is an ELNEC (End of Life Nursing Education Curriculum) trainer, so I am giving him honorary hospice nurse designation here. In this post, Jerry uses the metaphor of Two Paths through Pines, when talking to patients about comfort measures. With a lovely picture to boot.

Docs get plenty of kudos from me too! In Two Women Blogging, Jay tells us the blessings of a long day of conference calls and home hospice visits. Lovely writing here, as in: “I stood a moment and felt my soul start to uncrumple.” Speaking of palliative care docs, don’t forget to nominate your favorite! The Hospice Foundation of America Caregiving Blog announced a new award for physicians who show examplary care in advancing end-of-life-care.

Not to leave out social workers! In her blog, Confessions of a Young (looking) Social Worker, LeighSW, a hospice SW, blogs about the special sadness of working with a family about to lose a 13 year old girl and how they make funeral plans, in Small Coffins.

Here is a blog I rate for creativity and loose associations that make me ponder life and death . Shrimplate, an Emergency RN, has a unique way of rambling provocatively about everything, including end-of-life care. She warns, “Before you get so sick that you have to go to the local emergency department, you first have to build a hospital and train and hire the staff.” This, in the midst of telling a story about a makeshift urinal that got stuck.

I hope everyone that hasn’t already done so will take a look at the site How We Die. It includes a collection of personal stories, blog-like enough so I thought I would include one here. Cody Curtis 52 years old and diagnosed with cholangiocarcinoma, tells us about considering hastening her death using the death with dignity law. “The outcome is clear in my case. If you’re willing to look at what’s likely to happen, it’s fairly awful. People with this kind of cancer die of massive organ failure and it’s not pretty. The hardest part about the Death with Dignity stuff is deciding when to take the drugs.”

Thanks to all my palliative care pals who sent me suggestions for this month’s Grand Rounds! For good reading and great commentary, follow your prior hosts of grand rounds!


Christian, Drew, Thomas, and Lyle at Pallimed
Deathmama aat Dethmama Chronicles
Jessica Knapp at The Good Death
Thaddeus Pope at Medical Futility
Angela Morrow at About.com The Palliative Care Blog
Tim Cousounis at http://palliativemedicine.blogspot.com/

PCGR now has subscription options; you can follow by email or RSS feed.

The next PCGR will be out September 2nd and will be hosted by LeighSW who blogs at Confessions of a Young (looking) Social Worker !

Don’t forget to check it out!

I died as a mineral and became a plant, I died as plant and rose to animal, I died as animal and I was Man. Why should I fear? When was I less by dying? –Rumi

Posted in advance care planning, death and dying, hospice, palliative care | 13 Comments

>Palliative Care Grand Rounds

Posted on July 25, 2009 by Risa Denenberg

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OK you guys, any of you that read my blog: I’m doing Palliative Grand Rounds for August. See here for details. Send me those blogs that you think are remarkable, sharable, full of palliative care wisdom! Now! Do it now!

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>A Day in the Life

Posted on July 25, 2009 by Risa Denenberg

>People ask me what Outpatient Palliative Care is. What do I do? Today was a typical day.

Two of my patients are in the hospital. I’ll see them first. Then I can go to the nursing home and do my home visits.

RB, 26 years old, wants to go home, has no idea–none–how sick he is how close he is to maybe not leaving the hospital alive. Septic emboli throughout his chest, heart valve about to blow, but can’t be repaired, fungus growing in his brain. Yesterday I filled out the POLST form with him–Physician’s Orders for Life Sustaining Treatment. We will not resuscitate him if the valve blows or he has a devastating stroke–either is possible. We will let him die, because if those things happen, resuscitation will not bring him back in any meaningful way. I don’t even want to think about him dying now, so I haven’t really had that conversation with him. That conversation is about much more than code status, you see. Besides, he doesn’t look that sick and he is going stir crazy in that bed. He wants to tell his physicians what drugs to give him–pain meds, benzos, sleep aids. In turn, they are asking me what to do. Because I know him from clinic, because these are drugs that I prescribe for him. On the outside. We are all afraid he might walk out of the hospital AMA–against medical advice, despite the reality that he can barely walk after 2 weeks in the hospital. The resident asks me if we could send him home on hospice, but, like I said, I’m not there yet. I am rooting for him. Maybe it would be ok to sedate him a bit, at least he would stay here.

LK, 62 year old schizophrenic woman living in an adult family home found out she had laryngeal cancer and freaked out, landing in an involuntary admission to the psych ward. I know her from clinic too, where I manage chronic pain from peripheral neuropathy. She is having angry outbursts, unable to contain her emotions, making threats, feels that everyone wants to kill her, but also is having trouble breathing and sleeping. She did agree to some chemotherapy, but it’s not going to buy her much time. Besides, they had to give her steroids prior to chemo, and steroids make sane people act crazy. My job- to talk to her about end of life issues. I think she trusts me, but this week is not the right time for this conversation. Best to work on her anxiety and insomnia first. Unfortunately, she doesn’t have much time.

PJ with end-stage lung disease calls to tell me she has green sputum again. I go to the nursing home to visit, prescribe antibiotics and cough syrup, order sputum cultures, sit with her a while. “Am I going to have to go into the hospital?” she asks me. I answer, “I don’t think so. I think you’ll do just fine on the antibiotics.” We’ve been arounsthis block many times over the past 8 months. Once when I didn’t think there was a new problem to treat, I told her not to worry, I said, “You’re not sick.” She paged me later in the day, panicky. “If I’m not sick, are they going to kick me out of the nursing home?” She can walk about 12 feet without almost collapsing from breathlessness. In this job, I learn over and over, you have to be careful what you say.

Another nursing home patient, LF. She is a 70 year old Croatian woman who speaks some English but is hard to understand because of esophageal cancer. Today, I sat very close and listened very carefully. She had a lot to say. A long sad story. I feel most useful when I just listen.

Next, a home visit. KD, an 85 year old feisty woman with end stage heart disease. Living alone, daughter lives nearby. Has been doing ok, but has gotten weaker, now out of breath on her oxygen with conversation. Isn’t eating or bathing. And her oxygenation is bad enough to be causing some confusion. Refused hospice last month, but today is agreeable to having a nurse visit twice a week. At first, in her usual way, she is cheerful and upbeat, but then turns solemn. “Aren’t you supposed to be able to give me something, some pills, so I can die now instead of dragging this out?”I can’t because I am not a physician, but living in Washington State, where this is her legal right, I have to take this request seriously. Later today I will notify the medical director at the hospital and call Compassion and Choices, who will send someone out to explain the process to her. I’ll call her old primary care doctor and ask if he is willing to help her, but when I reach him, he says no. When I explained to her daughter that someone would be calling her to schedule a visit, she was very anxious. “Do I have to be there?” Meaning, when she dies. No, she won’t, volunteers are available to sit with patient’s who decide to hasten death in this way. But I reassure her, “I don’t think she is going to live long enough to go through with it.” But I’m not sure how reassuring that is.

Last home visit. RB, 60 year old man with end stage liver disease from hepatocellular carcinoma, which comes from chronic infection with Hepatitis C, which comes from shooting drugs and is made worse by heavy drinking. He is really pissed at me, my last note mentioned that he is still drinking (he is still drinking) and his doctor and the social worker more or less ganged up on him in clinic last week. “Damn, I thought that was between me and you. I need someone I can just talk to. I’m going to die anyway. I thought you understood.” There were beer cans everywhere, but he was so right, it was a violation of trust, although I didn’t realize that when I wrote my note. I guess I just didn’t believe anyone would give this guy a hard time about it. Dumb of me. He accepted my apology. I think we’re ok. Did he fill out the health care proxy form I left with him? “I lost it,” he said, “give me another one and I’ll fill it out”. I think he wants me to visit again next week.

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>Still missing you

Posted on July 12, 2009 by Risa Denenberg

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For Jon Marshall Greenberg, God is gracious.
February 22, 1956 – July 12, 1993

Journal entry, undated, in the year of his death, 1993
I have been learning, since I first opened that door, to handle spiritual reality for increasingly longer periods of time. It’s wild in there. I can now handle it for almost three seconds.

Jon taught me everything I live and know about death and dying. He taught me many other things, but for this lesson, I am daily thankful. I am relieved, even grateful, to find no cure for life, to come to know life as death’s bas-relief. You may balk at this statement, but sooner or later you will confront its veracity. You may rage at human transience; I would gently suggest that you confront your simple mortality. Your wellbeing, your growth, your soul, your comfort, your legacy, your journey towards death depend upon this dictim. This is needed, even essential–at least in the complex world we inhabit, at least as much as women need midwives and doulas to transition into motherhood. I hold these views because of my friend Jon, who deserves credit for so much in my mature life. Jon didn’t want a cure, asked us to burn his body in the street and eat his flesh, dutifully confronted us with out own forthcoming mortality. Every day, I wish to remind myself of how often I fell short of being the kind of friend he needed. Although I didn’t know it at the time, I had magic-wand ambitions, hadn’t yet learned the value of presence and silence. The gift of time. The measure of comfort and being-with. I hadn’t lost the need to fix things in my own image, didn’t receive these gifts, embody these skills (if I even have) until after he left.

But I did carry on. And I do resist a cure for what ails me, what I am dying of, what I am made of. I resist the very notion of cure as it is presented in so-called western medicine. I prefer to sit with people who long for cures, but must settle for life-as-it-is, helping, if I can, transform horror, by improvisation, into a soothing lotion rubbed onto the naked body, sealing in the private journey and cherishing what is out of reach, a final untouched meal.

Some of my poems about Jon can be read here.

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>Another Great Grand Rounds!

Posted on July 3, 2009 by Risa Denenberg

>Tim Cousounis at Palliative Care Success has posted the July edition of Palliative Care Grand Rounds. Go check it out! And please send me your most interesting palliative care blogs for the August edition!

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>Scribbles from 2 days at the trauma conference

Posted on June 6, 2009 by Risa Denenberg

>DAY 1



Preventing falls? C-PAP or tai chi?

Probably not.



Ice cave collapse

Finding myself in the crevices/between places

Where I do not belong

Radio this morning: Air France jet disappears on route.



Shaken-baby syndrome

Blast injuries

Death—it’s just the tip of the iceberg

Acute stress disorder

Emotional recovery

Exposure therapy

Maslow’s hierarchy

Desensitization

Thought stopping

Cognitive restructuring

Safety in the world

All things undone

Feeling hits me

Life is a trigger

Reminds me of my essential loneliness

Inability to connect/to be with/to belong

To become

Reminds me of death

Reminds me of the essential misunderstandings that encase a life/mine



Things unsaid/said wrongly

The problem of re-reading

The problem of hope

The problem of expectations and false maneuvers

Hidden motivations



It’s all memory anyway

Nothing really happens. Or is that.

Dissociation. Speaking.



Hemipelvectomy.

Where do I belong, hanging

Between life and death, favoring

Death, always favoring death because

Death always prevails. Always.

And time is such a useless concept in the face

Of death. How could it matter, if I am going to die

Anyway. There is the odd concept of waste. Waste of time.

Wasted food. Wasted resources. Waste of energy.

But if energy-matter can neither be created

Or destroyed (and how could that be so?)



Then what is waste?

Wasteful/useless

The same? Or different?



Top 10 Trauma Center topics

*hemostatic dressings

*trauma systems designs

*goal-directed resuscitation

*human genome response to injury (why am I not surprised by this?)

*factor VIIA

*artificial fascia

*endovascular surgery

And a couple more I don’t remember

Learnings? Not sure what I learned today.



DAY 2



Can’t explain these sudden dives and tumbles, feeling bad about self

Comes and goes

Best to learn to “live” with it.

Life is short.



Fresh whole blood in Tikrit

Routine, every day volunteers

Sitting in the mess tent with nothing else to do

Injury severity score

But how do they get used to war?

Even as medical providers?

Is it no different than getting used to:

Death in the hospital?

Abortion?

Assisted death?

Trauma care in general?

Palliative care? Ah, palliative care!



Mixtures of fluids is tricky, surprising, potentially fatal.

(so you see, the trick is understanding data on your own terms)

Hypotension is bad for the injured brain.

But who pays the oxygen debt?

98,000 deaths a year from medical errors

Now, everyone is scribbling

Now on to child abuse

(as about 1/3 of the audience gets up and leaves the auditorium)

“The enemy of good is better” James C. Carrico, MD

Why don’t they listen to this guy?

Right and left do make a difference

The racemic mix just didn’t work as well.

But no one noticed.

Life imitates science.

Watching the young woman on the aisle

Tuck her bare feet under her bottom, comfy.



Antioxidants improve resuscitation outcomes

The age of the blood affects outcomes.

You don’t want old blood.

Gene-banger. What’s that?

This is a young man’s game, methinks.

If the gut works, use it.

Neuropraxia

Transient quadriplegia

Plexopathy

Nerve root injury

Funiculi

Foraminotomy

Transfusion-related acute lung injury

Platelets must be stored at room temperature, higher risk of transmission

No longer using plasma from females

Older blood-more likely to die—third speaker who says this!

Cryoprecipitate

Second impact syndrome

Lunchtime. I hate small talk, choose to take a walk rather than sit at a table with strangers eating hotel food. Am I an arrogant shit? Probably. But, trauma conference—focus is on war and sports injuries—why am I here? Would rather write a blog than talk. Arrogant shit? No doubt.

Trauma surgeons with their PP slides of bloody flesh, distorted faces, missing limbs–these bring pain into vision. But few outside this club can look. I suppose that I can sit with strangers after all, these comrades who can look at carnage, and then eat lunch.



Preventing ventilator-related pneumonia.

The ventilator bundle.

They look much better, after we place the trach.

Really cute speaker, little crush here!



Thinking about when I wanted to die for every misstep, every miscalculation, every misunderstanding. Now I don’t think about wanting to die,

because I know that I will soon enough. No matter what.

So that’s why I do this work? So I won’t think about suicide as an option?


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Posted on June 3, 2009 by Risa Denenberg

>The June edition of Palliative Care Grand Rounds is now up here, at Angela Morrow’s About.com Guide to Palliative Care. Once a month, someone hosts this interesting group of recent blogs about death, dying, hospice and palliative care. Go and check it out!

Palliative Care Grand Rounds is hosted on the first Wednesday of every month and rotated through various palliative care blogs. For issues 1-4 of Palliative Care Grand Rounds (PGR), visit the the PGR homepage.

Keep an eye out. I’ll be hosting PGR one of these months!

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>Another doctor murdered

Posted on May 31, 2009 by Risa Denenberg

>

I didn’t know George Tiller, but I did know John Bayard Britton and David Gunn. The connection? All three were physicians. All three provided abortion services. And all three were murdered–that is, shot to death at point blank range–by so called “pro-life” killers.
George Tiller MD was shot this morning by another antiabortion murderer in his church in Wichita, Kansas, where he served as an usher. I was in New York City on the July morning in 1994 when Paul Hill shot my friend and colleague, Bayard, along with his bodyguard, to death in front of an abortion clinic in Pensacola, Florida. He was wearing a bullet-proof vest, he knew the risks. He would have rather retired, after a career in family practice, but he was one of fewer than a handful of physicians in Florida who was willing to perform abortions at the time, and he felt it was the right thing to do.
Back in the early days of legal abortion, Bayard gave me a gun, “for protection”. Not so odd, it was Florida after all. And we were under siege, getting picketed every week, bomb threats called into the clinic, personal threats to the staff and our family members. These folks called themselves the “Army of God.” Meglomaniacal Murderers would be a better fit.
I still have the gun, a lady’s .22 revolver, a lightweight. It reminds me of Bayard after all these years. Probably couldn’t kill someone with it if I tried. If I wanted to. Which I don’t.
I’m just saying.
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