Social Workers Are Awesome

In 1927, Francis Peabody remarked that "The secret of the care of the patient is in caring for the patient." Medicine has made much progress since those days, but some might argue that some of the humanitarian cornerstones of caring that concerned Peabody have been lost. Of course, there are many health professionals that still embody this caring ethic. And in todays era, perhaps the group that best personfies this central caring ethic of medicine are medical social workers.

I know we should avoid generalizations, but isn't it the case that all social workers are nice? Perhaps it is this niceness, combined with their knowledge and skills that makes them so indispensable. It is often the social worker on the team that understands what is really going on with the patient and identifies the key details that make it possible to effectively care for them. It is because they know what to ask, and patients and families are comfortable confiding in them.

Geriatrics practice would be impossible without social workers. I definitely see this in our Geriatrics clinic. Many patients are referred to Geriatrics because things seem to be falling apart in terms of their ability function independently at home. After I do an initial evaluation, I have to admit that I sometimes feel kind of bewildered. There is almost never a single underlying cause of the patient's problems---as the Fiddler on the Roof song goes, it is a little bit of this, a little bit of that (or perhaps a lot of this and a lot that). There is always a complex interaction of medical, social, and environmental factors that can not be separated from each other.

So, after I do my initial evaluation, a politely excuse myself from the exam room and knock on the door of our social worker, Karen. She somehow always has time for my unannounced visit to discuss the patient, often even adding the patient that day to her overbooked schedule. After talking through the issues with her, what was bewildering starts to become clear, and we are able to start formulating a plan for the patient. I end up returning to the exam room more confident we will be able to come up with a plan that will help the patient.

Can you believe there are still doctors who will dimissively refer to some patient issues (usually psychosocial issues) with a comment such as, "that's social work." The tone often implies they think the issue is not their problem, or even worse, they think addressing the issue is beneath them. Perhaps we should continue to encourage physicians to remark, "that's social work" but train our students to know that means they are dealing with something of particular importance that will take great skill to manage.

I know very little about the structure of social work training. However, it seems efforts to improve medical education could learn something from social work training. Social workers tend to be better than most physicians at communicating with patients, and many patients are more comfortable talking to a social worker than their doctor. The ability of social workers to uncover key elements of the history that physicians fail to identify suggests we can learn some basic skills of physicianship from them. It sure seems we would be better doctors if more elements of social work training were included in our training.

Given the importance of the medical social worker, you would think this would be a well paid position. However, according to the Bureau of Labor Statistics, the median salary of medical social workers is only $46,000 per year. Only 10% earn over $70,000 per year. This seems strikingly low for a position that requires extensive education (many social workers have masters degrees), requires very high level skill and judgment, and is so indispensible. I wonder what the reasons for this are. Is this because social work tends to attract individuals committed to helping others and who are therefore less concerned with monetary rewards? Is it because social workers are so focused on others that they are less effective at negotiating their compensation? Or is this the legacy of workplace gender discrimination, as historically, woman have been more likely to enter social work than men?

We are currently in the middle of Social Work Month 2010. This year's theme is Social Workers Inspire Community Action. But day in and day out, social workers make things better for our patients. In truth, every month is social work month.

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Talking Palliative Care and Death: Get Up, Stand Up, Grow Up

Finally. This debate has been waiting to happen ever since NHO added the “PC” to its name back in the last century. How ironic that dying has suddenly become so un-PC. Even to us.

What is our problem? On the surface, it’s simple: we have matured as a field, to the point that we now have to contend with how we look, and more importantly how we speak and act, in the real world of health care. This is good news, but to make it work, some soul searching is in order.

Why has dying become “radioactive?” Because Sarah Palin, PR master, made it that way with her Death Panel comment on Facebook. With one (more) semi-conscious crazy-ass remark she made “fear of death” the brand for all end-of-life considerations. And because optics is everything in our surface-obsessed culture, the world bought it. Are we following the world on this one? Uh-oh – I smell fear in the room. In fact a subtle scent of fear pervaded many of the meeting rooms in the Hyde Center last week. Did you notice?

Be careful, folks, of making “optics” more important than substance. We, of all people, should know better. We’re the only subspecialty that dares to utter the word “spiritual.” Didn’t a wise person once warn us about gaining the whole world and losing our souls? Full disclosure: I’m a non-religious left-coast spiritual junkie, but all true explorers have to admit there are some great quotes in that book.

It’s easy to see where the “radioactive” rhetoric is coming from. In DC, policy making is indeed all about optics. For a Senator or Rep, one thoughtless word and your constituents send you back home to get a real job. But for us it’s got to be different. Radioactive? Hm. I try not to go near radium, but I do get close to death, and so far my skin hasn’t sloughed off.

Wake up! Our discussion has to take place on two levels. So far we’ve stayed safe and superficial. “Putting up a wall between PC and dying” is a branding issue, pure and simple. Sure, we don’t want to turn people off – that would include patients, families, doctors, Congressfolk & their aides, most journalists, in short almost everybody but us. But wait – us too? Please.

In the “real world,” branding is a fact of life. You have to convince people to pay real dollars for a bottle of water. It works. They’re selling 14 billion of those babies a year now. It’s emotional – you turn people on by convincing them they’ll feel better if they buy what you’re selling. Case in point: Pharma ads.

“Death panel” rhetoric is just the other side of the coin – turn people off to Obama and government “intrusion” into health care by making them scared. Negative ads are a necessary tactic for Sarah because anyone with a brain knows that government is already the biggest payor in health care, and bound to get bigger unless you want to drop everything, move your parents into your own house, and nurse them as they age and, yes, die.

But – and here’s the key point – branding works on a piece of your brain that lies deeper than the thinking part. Call it what you want – the limbic brain, the reptilian brain, the emotional brain. It feels, doesn’t think, and once it’s convinced, it’s impervious to intellectual appeals no matter how sensible (read “evidence based”). Tea party, anyone?

The “feeling brain” has a much stronger influence on decisions than the opinions and beliefs held by the “higher brain.” If this “lower” mode of “thinking” sounds familiar, it should. Just recently, we barely survived eight long years while it ran the Federal government. Didn’t Karl Rove just publish a book? Maybe we’ll get a peek behind the wizard’s curtain: the wizard of the low-brow brain.

You can’t get anything changed in society without making good use of branding, because change makes people nervous, no matter what they “think.” That’s why everyone is for “cutting health care costs” (an admirably higher thought) but no one’s Senator or Representative will actually cut any costs, because that’s offensive to the lower brain. It runs on fear, which is higher-octane fuel.

I love branding. I think of it as a way to join the mind and heart to get things done. Shameless plug: our little group at Sutter Health, a 26-hospital system in N. CA, 8th largest non-profit in the US, has taken our Advanced Illness Management (AIM) program of home-based palliative care system-wide. We’re using it as the “glue” to bind together hospitals (complete with inpatient PC and allied hospitalists), medical groups, home health and hospice, along with whichever community-based services and unaffiliated docs want to play. It’s taken 12 years since we got that first RWJ “Promoting Excellence in End-of-Life Care” grant, but we are finally mainstream, with full system support top to bottom. Why? Because it’s the right thing to do, and oh yeah, it could cut costs. Of course, it will take 12 more years to get all the moving parts running together, but that’s another chapter.

Note that the AIM “brand” is deliberately not about dying – on the outside. On the inside, the metrics are all about POLST forms and hospice enrollments, and the staff are all trained to have the difficult conversations that MDs start and AIM staff can finish. It took a solid week in 2001 to think up a name for the program that didn’t conjure up the D word. It had to be sexy, and of course it had to have a snappy acronym. Advanced Illness Management (AIM). That’s branding. If you want to be a player in the adult world (which is really a sophisticated but thin veneer over some pretty primitive emotional material), that’s how you have to play.

So that’s the branding issue – important, but not the end of the story. We certainly have the experience, insight and spirit to go deeper than that. But do we have the spine? I hope so, because that’s what it takes to get where we need to go. Yes, we have a duty to our patients, who naturally want to live as long as possible (perfunctory bow to autonomy). However, we are also accountable to our culture, which very badly needs to hear what we know about the bittersweet reality of death, whether or not it wants to listen. Our country has some hard choices to make about what to value in our health care, and we need to be at the table. Who knows, the way “reform” is going (or not), we might be some of the only grownups there.

We are inside players who know the truth, and we have a responsibility to help our society come to terms with dying. Of course it’s hard, and more than a little scary. You want to think twice before you call someone out about what’s in their shadow. You’re bound to get a reaction, sometimes violent. Fear is a powerful force, but it’s blind. So be careful – that is, full of care.

Leadership counts in the adult world. We have to talk about what matters, out loud, with others listening, again and again. Repetition is the key to adult learning. Don’t be dumb, keep your audience’s fears and prejudices in mind, use your branding expertise, but don’t withdraw. That’s what wounded children do. That’s the avenue many of us have taken to become “wounded healers.” It’s a noble path. But hey, it’s time to grow up. We matter now, and the world needs what we have to offer.

Ah yes, the world. Whatever happens with the White House reform proposal, it’s only about insurance reform. It won’t even begin to touch delivery system and payment reform – they’re also radioactive. There will be lots more work to do, and some of it will be up to us.

Let’s talk bottom lines. Below are four fundamental reasons why I believe palliative care is critically important to health care reform. Forget radioactive. Talk about it. Just persevere. Outlast the resistance: this is a basic spiritual principle. Don’t be cowed. If the system is to wake up, that process needs to start in our own minds.

1. Economics: What, we’re going to publish data showing that inpatient PC saves money, then stop talking about it? Most hospitals in the US are losing money on every Medicare admission, CMS is going to stop paying for readmits, and Obama is promising to cut Medicare reimbursement further to pay for wider coverage, as he should and must. Summon your courage. Even the Dartmouth Atlas, which slew giants with their 2-part Annals study that showed more treatment isn’t better, is afraid to come right out and say that we simply have to stop treating people to death. Case closed. For better or worse, however, that heavy lifting will be up to us. Come on, try to convince me that this isn’t going to become a huge issue as the stimulus wears off, as we stop buying our own Treasuries, as interest rates go up and as China loses its appetite for our debt. We can’t keep paying for fantasies of everlasting life on credit. At some point the bill will come due. Here’s what will happen: bundled payments and ACOs (which I’m for, having learned in CA how managed care aligns financial incentives) will bring back global capitation under another name. Providers, striving to maintain income and market share, will fight each other for the scraps. Reality will bite. Unfortunately, it will take big chunks out of our patients. Disease, reversible or not, will remain untreated, especially in the elderly. Pain will certainly not get managed unless we make it happen. Dying, if it continues to be ignored, will get uglier. I could go on. We are ideally positioned to help. Don’t be downhearted. Why else have you sat with those who are hopeless, holding hope for them? What have you learned? Hopefully something about the transparency of despair, and awareness of what’s on the other side. Teach that.

2. Patient choice: This one’s easy. When advance care planning gets started early enough to detoxify the process, people tend to choose not to go through the rehospitalization revolving-door meatgrinder. Flash: public at large! In today’s fee-for-service system, while we’re still under the delusion that we can afford everything we could ever want, you shouldn’t fear we won’t treat your grandmother. You should fear we won’t stop, because unless you speak up, we won’t. Even Sarah will figure this out as her parents age. Look at Bud Hammes’ 25 years of work in La Crosse WI. Respecting Choices is very cool, because it turns down the heat on the issue so people have time and space to reflect, to decide what they really want, and to choose to die at home with family and friends.

3. Emotions: Sarah reaches people because she knows how to get to their feelings. Check out that red dress. We have to go there too, although in general, depending on the company, I draw the line at wearing a dress. Make it fun! But make the point. I absolutely refuse to allow Sarah to take the “moral” (not) high ground on these issues. We have been seduced by the idea that if we just get academic enough, everyone will accept us. Hey, I’m au courant. When designing interventions, my thinking is as evidence-based as the next modern, highly-evolved physician. But when it comes to serious illness and death, that’s so yesterday, so out of touch with reality. People don’t think, they feel. Ironically, Antonio Damasio has provided plenty of hard evidence for the emotional nature of thinking (read The Feeling of What Happens, Descarte’s Error & Looking for Spinoza), but we haven’t incorporated this elegant and wonderful data into our approach, yet. Oops, Sarah and Karl already have, although in terms of ultimate reality, please forgive them for they know not what they do.

4. Spirituality: I love the studies showing that people who have a deep and abiding belief in God, and faith in a soul that lives beyond the grave, say that they want to go straight to the ICU on a vent when things get scary. Like you, I have seen countless people go to their death with joy on their faces, even if the smile sometimes shows up pretty close to the end. I tease myself with the thought that my awareness, my growth over decades, my inner struggles with my demons, my own and others’ mortality, may have some influence on that marvelous awakening. Who knows? Bartenders and hairdressers, with experience, could probably do as well. Of course, that awakening doesn’t happen as much in the ICU as it does at home. Thanks, hospice volunteers. Anyone want to connect the dots between spirituality and reducing readmissions? Feel free. What’s radioactive now will be kitchen-table conversation one day. The “dying problem” in the US is ultimately (I use that word on purpose) a spiritual one. Come on, PC people – we have a front-row seat. Tell stories and change minds – or hearts, which is the real first step.

Way more to say, but this is a start. Get with Twitter, it’s quick and easy. We need to talk about all this together. Don’t let the bloggers bogart the conversation.

Rave on, brothers & sisters. You may catch some flack in the short run, but eternity is on your side.

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Maintaining Relationships: Stop Using the Words ‘Terminal’, ‘Dying’, ‘Hospice’, ‘Advance Directives’ and ‘Bereavement’ that Push Others Away

The best learning experiences for me have been times when I come away questioning core assumptions about the work I/we do. As palliative care folks, we try to help people understand where they are in relation to their disease and what their hopes and goals are for care. We offer treatments and resources to match those needs through, in part, supportive communication. What if, in our kind, well-meaning communication, we actually hurt or push away the very people we purport to serve? We may then feel misunderstood, even angry. (Sound like a relationship you’ve had?)

Diane Meier, MD gave an update on March 4th at the HPNA/AAHPM annual meeting entitled “Update on National Palliative Care News: How the Big Picture Affects You.” It was an enlightening, exciting, distressing update and call to action for the palliative care community. She made too many important points to discuss here, so let me pick one.

The new (to me) hot word in the political arena is “optics”. It’s all about how you see things - perception. Perception is in the eye of the audience. (Kind of like pain or shortness of breath is what the patient says it is.) We want and NEED to have a relationship with our patients and families who are part of the general public. We need them to perceive us as helpful and valuable both to serve them and to promote our vision of a holistic health care environment that matches patients’ preferences with appropriate care. So why do our patients/families, through the media and through our work, often NOT see us as helpful and valuable, but, as my son once proclaimed me, as “The Mistress of Death”? What, we must ask if we want to sustain a future in this relationship, is our part?

Dr. Meier observed that we use language that associates palliative care with dying. Consistently. Language is important. Language creates perceptions and (may) define our relationships with the people we care about most. Consider that the tiny line in the proposed health care bill allowing physicians to be reimbursed for having a conversation every 5 years with their patients about advance directives DIED because of optics. It was perceived (used, twisted, misconstrued) by a few clever politicians that physicians were going to talk about dying and (logically, of course) talk people into dying. They quickly conveyed this idea to the general population, OUR audience – our audience who votes. Language. Optics.

Our audience – patients and families – often don’t want to hear about dying. Death and dying is scary. Scary equals reactionary sound bites (i.e. death panels) that can dash any hope we have of reasonable reform and ongoing open relationships. (Ex. Advance directives talks with your physician = dying = fear = death panel = killing Granny and babies with Down’s syndrome). And guess what other words also equal death to our audience? Terminal. Advance directives. End-of-life. Hospice. Yes, and even bereavement. As long as the majority of our patients/families (to say nothing of our health care colleagues) associate palliative care with dying, they will not have access to our services.

Whoa, this is a lot to take in. You mean don’t use the words we have been using for decades to demystify the fear and denial of death in our culture? Isn’t this who we are? What about the movement we have come to birth, nurture and protect? Really, stop using those words?

On the other hand, if these words cause others to retreat from our services, how does it serve either of us? Does rubbing someone’s nose in something we feel is important make them want to be our friends? Probably not.

OK, let’s go back to our part in this relationship. In any relationship, intimate or professional, we make compromises. We decide how much we are willing to compromise to maintain the relationship and how much to hold our ground lest we lose our integrity, our selves. Like good palliative care folks, we must ask ourselves, what are the perceived benefits and anticipated risks?

Everywhere we merge the terms hospice and palliative care. Even our national organizations merge the words: Hospice and Palliative Nurses Association, American Academy of Hospice and Palliative Care Physicians, The National Hospice and Palliative Care Organization. Yet hospice care is a subset of care for the dying which is a subset of palliative care. If we really want to separate the perception that palliative care is about dying, do we need to have separate national organizations? Separate certification and educational programs? Do we need to rename palliative care “supportive care”? This may seem outrageous to some. But we must ask, what are OUR goals? I certainly don’t have the answers, but I think the questions are really important.

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GeriPal at HPNA/AAHPM in Boston!

The annual HPNA/AAHPM conference starts tomorrow and many of us will be in Boston (me, Eric Widera, Patrice Villars, Rebecca Sudore, Bob Arnold, VJ Periyakoil, among others).  We decided to take a cue from big pharma (facetiously) and advertise GeriPal with pens - look for them!

Two GeriPal related events you should know about:

1. Social Media in Palliative Care Communities: Developing and maintaining your online presence.  Presentation by Eric Widera, Christian Sinclair, and Alex Smith.  Friday March 5th 7-8:15am.  Set your alarm!
2. Party!  We are cohosting a gathering with Pallimed Friday night March 5th at 8pm at Lir Irish Restaurant and Pub, 903 Boylston (1/2 a block from the convention center). Appetizers on us!

Looking forward to seeing you in Boston!

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Potpourri from Clinical Work II

I've been on the palliative care service these last two weeks. Some interesting and challenging issues came up.  I don't have time to flesh them out into individual posts.  I would love some feedback from the GeriPal commmunity.

1. I was consulted about a 62 year old woman with an unusual form of memory disorder: she couldn't form new memories (all cases completely altered to protect patient identity).  She was stuck in a past that existed 8 years ago.  She had end stage renal disease and was on dialysis.  She knew that she needed dialysis to survive, because that was also true 8 years ago, and would agree to start each dialysis session.  Shortly after starting a dialysis run, however, she'd stand up, forgetting why she was there, and try to go for a walk.  The frequent need to re-orient her proved too much for the dialysis providers.  They refused to continue dialysis.  This case raised a number of issues.  First, if she understands the risks and benefits of dialysis, but then can't sit still for it, what is our obligation?  If we stop the dialysis she will die - and clearly if we talk to this patient about her life, which she believes is her life from 8 years ago, she doesn't want to die.  Second, the team was considering giving her sedating medications so she could make it through each dialysis run.  This form of chemical restraint might be less repugnant than phyically strapping her down, but it is still a form of restraint that doesn't seem right.  We (with the help of a formal neuropsychiatric consultation) ultimately decided she doesn't have capacity to make complex medical decisions.  I don't know how this case will end.
2. What is up with neuroleptics for hiccups?  Specifically gapabentin.  Is this real or marketing?  I was asked about gabapentin twice in the last week.  There are a few reports (here and here) in the literature that I can find, but I want to know from the "real world" if this works.
3. Why isn't there a lower dose of long-acting opioid?  I've had several instances of patients with chronic pain or COPD for whom very low dose opioids are effective.  But their total daily dose is typically around 8-12mg of oral morphine equivalents - too low for the lowest dose of long acting opioid.  The lowest dose fentanyl patch is 12.5mg, equianalgesic to 25mg of oral morphine; the lowest dose of MS Contin is 15mg twice a day (30mg/day);  the lowest dose of oxycontin is 10mg twice a day, again equianalgesic to 30mg of oral morphine a day.  Having to take medications multiple times a day is a drag for patients, and for those in nursing homes, burdensome on the staff.  Anyone else frustrated by this?

Looking forward to seeing some of you in Boston at the palliative care conference! 

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An invitation from Elise Carey and Laura Morrison... Please join us

Do you want to learn more about how your colleagues are teaching learners about hospice and palliative medicine?

Then, don’t miss this great new session at the 2010 Annual Assembly of Hospice and Palliative Medicine (AAHPM):

Interactive Educational Exchange: Sharing Innovative Teaching Materials and Methods

March 5th 3:15-4:15pm

For this interdisciplinary session, five educators were chosen through a highly- competitive review process to share their innovative curricula. The session will include a hands-on, interactive exploration of each of the educational materials at individual tables. Our hope is that participants will get ideas and materials to enhance their own educational programs at home.

The five innovations that will be presented are:

1) Amy Holthouser, MD - Palliative Care Clinical Teaching Vignette

2) Susan Kristiniak, MSN, RN - Pain Improvement with Nursing Knowledge

3) Gordon Wood, MD - Pain Theater

4) Susan Gerbino, PhD, MSW - Zelda Foster Studies in Palliative and End-of-Life Care - Zelda Foster Fellows Program

5) Zaki-Udin Hassan, MBBS - Use of the Human Patient Simulator for Training in Palliative Medicine

Please join us!

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More on dementia and mammograms

We recently discussed a study that described the common practice of obtaining screening mammograms in women with dementia. We considered how mammograms are very unlikely to benefit these patients, but have a substantial possibility of doing harm.

Paula Span, on her New Old Age Blog at the NY Times has a wonderful post on this article. She imagines what it would be like to be a frail older woman with cognitive impairment, being undressed for a mammogram, for reasons she does not understand.

But what is most instructive about this post are the poignant comments from adult children of persons with dementia. A number express the sentiment that they had to protect their loved ones from a health care system that seemed to insist on performing all tests and ignoring goals of care such as the desire to focus the care of their parent on comfort and quality of life. Several reported having to fight to not have screening mammograms done.

I am sure the health providers who tried to order these procedures, or convince family members of their necessity, had good motivations, and wanted to do the right thing for their patients. But what is remarkable from the family comments is the anger this has left in them, still present years later. It seems that one of the most awful outcomes we can have as health professionals is leaving our patients' families with a belief that they have to protect their loved ones from us.

It is instructive that sometimes doing a procedure for a person does not leave family members a sense that "everything" is being done for their loved one. Rather it leaves a sense of bitterness that no one is really listening to them or their wish to protect their loved one from unnecessary pain and suffering. Perhaps we need to spend more time listening to these perspectives.

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A Call for Hospice Reform: Nurse Practitioners Lead the Way

Last week a physician colleague expressed her concern about signing routine hospice admission orders for her elderly patient with end stage heart failure. The routine ‘as needed’ (PRN) orders included phenobarbital, pentobarbital, haloperidol, lorazepam, and morphine. “The hospice nurses know more about this than I do, don’t they?” she said. Yesterday, a longtime palliative care nurse told me she didn’t want to put her mother with end stage heart failure in a nursing home with hospice, because “they’ll just give her morphine and ativan. I want her heart failure managed.”

I worked as a hospice case manager in the community for eight years prior to becoming a nurse practitioner (NP) and have blogged in the past here about similar concerns. In my experience, most hospice nurses know a lot more about how to manage generic end of life physical symptoms than many physicians, particularly pain management and psychosocial symptoms/issues. Highlight generic. Physicians and NPs are trained to think pathophysiologically. We think via differential diagnosis. For example, as a hospice nurse (RN), I might have managed shortness of breath (SOB) in a patient with heart failure with low dose morphine. As an NP I might also look for subtle signs of fluid overload (JVD, bibasilar crackles, dependent edema) for possible diuretic adjustment and think about how the patient’s renal function might factor into these decisions. I might check if there are co-morbidities to consider (aortic stenosis, atrial fibrillation, myelodysplasitic syndrome/chronic anemia, COPD, Parkinson’s, anxiety, GI dysmotility) when thinking about meds (including opioids) in determining the source and treatment for the SOB. As an RN, if a patient became confused I would check for pain, constipation, and urinary retention. But then what? I might give lorazepam or haldol. These are likely pre-signed orders that may even be in the home for those “just in case” times. Convenient. As an NP, I might also think about infection, co-morbidities, polypharmacy, and medication side effects (particularly in the elderly.

Registered nurses are trained to alleviate suffering through diagnosis and treatment of human responses to actual or potential illness. We are trained to assess and treat based on holistic goals and to view the patient in the context of their defined family. Palliative care and nursing philosophy share a holistic approach to care that encompasses physical, emotional and spiritual concerns of the patient and family unit. It is no small wonder that nurses have been the foundation of community hospice work since its beginnings. Physicians are trained to formulate and treat medical diagnoses. Nurse Practitioners are, well, the middle children. We are nurses who have advanced training in diagnosis and treatment of medical conditions in addition to our foundational training. Our medical training is not as deep or broad as that of physicians. Nurse practitioners often pursue further training to develop an area of expertise.

None of us truly knows what we don’t know. Even the most experienced hospice nurses don’t know how their practice would differ if they had the advanced education and training of a nurse practitioner. Few physicians or physician assistants understand the level of training of RNs or LVNs/LPNs, nor their scope of practice. How could they? They’re not nurses. Only the nurse practitioner holds the dual training and, as such, is the perfect liaison for optimal collaboration between these two disciplines.

Surprisingly, nurse practitioners do not play a pivotal role in most community hospice agencies. Medicare requires that there be a physician medical director. Registered nurses usually function as the hospice case manager for the care of the end stage illness.

Hospice nurses are well trained in using medications to manage symptoms. Hence the array of the (all too often) ‘one size fits all’ order set of PRNs. This makes sense when the nurse is out in the home or on the phone doing her/his very best to assess and treat distressing symptoms at the end of life. It’s pretty difficult to track down the doctor of record, contact her/him, describe the situation, request an order and get it to the patient within a reasonable period of time such that the patient (and family) does not suffer for hours longer. Having pre-signed orders to use PRN can be a life-saver (no pun intended) at times. The downfall is the one size fits all practice. Shortness of breath equals morphine; anxiety equals lorazepam; confusion/agitation equals haldol.

There is continued grumbling among hospices and palliative care folks that patients are often referred too late to hospice care. However, at least in the case of patients with some non-cancer diagnoses, are they? Is our system set up to care for these patients optimally at the end of life? Sadly, I think not.
Happily, there is a relatively easy solution – use nurse practitioners who have advanced training in palliative care and (my bias) gerontology.
What if hospice nurses had easy access to a palliative care NP who had the training to assess and treat medically complex patients at the end of life? What if the hospice nurses had access to someone who understood their practice and could provide the appropriate education and support to improve their practice? What if the NP was available for home visits? Hospice nurses might practice differently. Patients would get better care. And health care providers might not be so reticent to refer their patients a little earlier.

The Medicare Hospice Benefit requires the provision of 24-hour nursing services and a physician medical director who reviews medical orders and participates in an interdisciplinary team group overseeing patient care. Why not a nurse practitioner and physician as co-directors? It makes sense. It’s time. And it’s the right thing to do.

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The last year of life in the oldest-old

There is a very interesting study in the January issue of the Journal of the American Geriatrics Society that characterizes functional status during the last year of life in the very old. The study illustrates a point we have recently stressed on GeriPal: The vast majority of older persons will have some degree of significant disability in the last years of life. This is in contrast to the popular perception that disabiity can be prevented if one does all the right things. Encouraging good health habits is a very good thing. However, suggesting that if you become disabled, it must be because you did something wrong is a very bad thing.

This clever study, led by Jun Zhao of the University of Cambridge in the United Kingdom, leveraged the Cambridge City Over 75 Cohort Study. This longstanding study originally enrolled a representative sample of persons over age 75 and has been following them for over 2 decades. This analysis examined the 321 subjects who died after the age of 85, who had interviews in the last year of life. On average, these subjects were interviewed 6 months before death. Because these 321 subjects are broadly representative of older decedants in Cambridge, the results provide important insights about the functional status of persons over age 85 in the last year of life. Here are some key selected findings:

In the last year of life, the overwhelming majority of persons over the age of 85 have major functional impairments. Among those age 85-89, in the last year:

• 50% of persons needed the help of another person to bathe
• 30% needed the help of another person to shower
• Only 43% could walk one block, and only 19% could walk around town
• 57% needed help preparing meals
• 76% needed help doing housework
• 86% needed help shopping
• 34% needed help taking their medicines
• Putting this all together, 59% were disabled in basic activities of daily living (ADL). 26% could do all their ADL independently, but needed help with instrumental activities of daily living (IADL). Only 15% did not have disability in ADL or IADL. (note: ADL refer to basic activities essential to living independently such as bathing or dressing. If one is disabled in ADL, one generally can not live successfully without help. IADL refer to higher ordered activities important to well being such as housework or meal prep)

Rates of late life disabilty escalate markedly as people approach their 90's. It is rare for persons in their 90's to not have major disability in their last year of life. For example:

• 56% of persons needed help getting dressed
• 76% needed help bathing
• 90% needed help preparing meals
• 87% needed help with housework
• 97% needed help shopping
• 64% needed help taking medicines
• Only 6% could walk about town. Only 22% could walk one block
• Putting this all together, 85% had a disability in a basic activity of daily living (ADL). 11% were independent in ADL, but had a disability in an instrumental activity of daily living (IADL). Only 3% (ie, about 1 in 30), were free of disability in either ADL or IADL.

So, does this mean quality of life is bad at the end of life in older persons? ABSOLUTELY NOT. It would be interesting to know what the elders felt about their disability, but based on their self-rated health, it seems many adjusted quite well. 61% of those 85-89 said their health was good or better. In the far more disabled 90+ year olds, 67% rated their health good or better.

It is interesting that many would be distressed to learn that living to a very old age is accompanied by an extremely high likelihood of being disabled for an extended period of time towards the end of life. However, I suspect the majority of elderly adapt to disabilty and are satisfied with their lives.

"Compression of morbidity" is a good thing. However, the common perception that if one just does all the right things, one will be free of disabilty for one's whole life is a myth. I wonder if some of the societal attitudes towards disabilty reflect ageism and lack of respect towards the elderly. Many notions of "successful" age would view the elders in this study as "non-successful." I hope that many of the elders would beg to differ.

Our discipline of Geriatrics needs more balance in its research. We have done great work elucidating the causes and risk factors for disability and developed novel interventions that may delay the development of disabilty. This is important work that needs to progress. But we need to balance this with much more research that examines the quality of life of elders with disabilty, coupled with interventions to improve the quality of life of disabled elders and their caregivers.

As a society, we need to talk much more about late life disabilty. Of course we should encourage healthy lifestyles that may delay disabilty, but we really need to stop suggesting that those who are disabled somehow did something wrong. Over the coming decades, the number of elders who are blessed to live into their ninth and tenth decades will increase dramatically. We need to think about how to better structure health care and living environments to promote the quality of disabled elders.

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Medicine In Translation

“But what will you be doing to cure my disease?” the interpreter said, relaying the words of our patient.

Was there an error in translation? Perhaps there weren’t clear equivalents of “cancer” and “metastatic” in Mandarin? Perhaps the patient somehow didn’t know her diagnosis after 5 years of illness?

The possibilities of confusion were endless. But it was a frigid December night, and Mrs. Liang (not her real name) sat with us in her hospital room, gripping the telephone that connected us together via a far-off Mandarin-English interpreter.

We didn’t know why Mrs. Liang had been admitted to the hospital. She had a remarkable performance status for some who’d just been through breast cancer and was now battling widely-metastatic colon cancer. She was 51, alone in this country, somehow managing to climb two flights of stairs in her walk-up apartment every day, despite the “too numerous to count” mets in her liver and the “too numerous to count” mets in her lung. The cancer was in her spine, and had progressed despite chemotherapy.

Yet here she was, asking us about “cure” via the dutiful, business-like interpreter who was probably sitting in an office thousands of miles away from our hospital.

Much later, I sat down to write about Mrs. Liang for my book “Medicine in Translation: Journeys with my Patients.” When I finally had the time and space to process, I tried to tease out the multiple layers of confusion. There were language barriers and cultural barriers with Mrs. Liang, issues of disease knowledge and social isolation. There was the awkwardness of handling sensitive subjects such as metastatic disease (and, ultimately, advance directives) with a disembodied interpreter via telephone. Was Ms. Liang in frank denial? Did she have cognitive impairments? Had no one ever told her the prognosis?

Medicine is its own world. Becoming ill is like emigrating from a land of the healthy to a land of the sick. People with illness face a new language, a new culture, new mores. Patients who have actually emigrated from other countries and then become ill are confronted with even more barriers and challenges. Physicians and other caregivers become the interpreters of the culture of medicine. In these roles, we often end up on unusual and moving journeys with out patients.

Here’s a short journey I took with another of my patients, one that involves a confusion of languages and translations. I invite you to share your thoughts.

___________________________________

Danielle Ofri is a writer and practicing internist at New York City’s Bellevue Hospital. She is the editor-in-chief of the Bellevue Literary Review. Her newest book is Medicine in Translation: Journeys with my Patients. View the YouTube book trailer.

Danielle will be visiting San Francisco and reading at City Lights Bookstore

on Tuesday Feb 23 at 7 pm

She is also giving Grand Rounds at the following institutions: (full details here)

• SFGH Dept of Medicine, Tues Feb 23 at 12 pm
• SFGH Dept of Pediatrics, Wed Feb 24 at 8 am
• CPMC (Pacific Campus), Wed Feb 24 at 12 pm
• Contra Costa Med Center, Thurs Feb 25 at 9 am
• Moffit Hospital, Thurs Feb 25 at 12 pm

You can follow Danielle on Twitter and Facebook, or visit her homepage.

Her blog, Medicine in Translation, appears on Psychology Today’s website.

 

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Feeding Tubes in Advanced Dementia: It's all About Location

Feeding tubes are often placed in the hospital setting for patients with advanced dementia, even though there is pretty much a lack of evidence for their effectiveness in improving survival, preventing aspiration pneumonias, or helping resolve issues like pressure ulcers. One big question though is why does there seem to be so much variability in why patients with advanced dementia get feeding tubes?

A group of researchers from Brown University and Harvard Medical School looked at this question by trying to identify specific characteristics of acute care hospitals associated with greater rates of feeding tube insertion. Their study, published in this weeks JAMA, looked at over a quarter of a million hospitalizations in 163,022 previously non–tube-fed nursing home residents with advanced cognitive impairment, aged 66 years or older, who were hospitalized between 2000 and 2007. Nearly 20,000 feeding tubes were inserted. In 2007, 6.2% of hospitalized advanced cognitive impairment patients received a feeding tube.

Interestingly, the rate of feeding tube insertion varied dramatically (from 0 to 39 insertions per 100 admissions) in hospitals that admitted at least 30 nursing home residents during the study period. A select group of hospitals (12% of them) did not insert any feeding tubes. These hospitals were smaller, more likely rural, and were less likely to be affiliated with a medical school. The authors also look at each hospital’s practice patterns in the care of patients with chronic illness based on 3 measures from the Dartmouth Atlas of Health Care. They found that the hospitals that did not insert any feeding tubes accounted for 34.1% of those hospitals in the lowest decile of intensive care utilization in last 6 months of life

In the multivariable analyses, nursing home residents with advanced cognitive impairment were more likely to get a feeding tube if admitted to:

• Hospitals with greater ICU utilization for decedents with chronic illness in the last 6 months of life
• A forprofit hospital vs hospitals owned by state or local government
• Hospitals with a greater number of beds (>310 beds vs <101 beds)

Several nursing home resident characteristics were also independently associated with feeding tube use. White residents had the lowest chance of getting a feeding tube, while blacks had about a 2-fold increase in the likelihood of getting one. Patients with written advance directives, DNR orders, and orders to forgo artificial hydration and nutrition were also to get a feeding tube.

In a press release Joan Teno, the lead author stated that “Our results suggest that decisions to insert a feeding tube in persons with advanced dementia are more about which hospital you are admitted to than a decision-making process that elicits and supports patient choice.”   This statement makes me think of a recent paper in the Archives of Internal medicine (reviewed by Pallimed this week) showing that whether a patient with advanced dementia gets a feeding tube may depend on the culture of the nursing home.   Like it or not, it seems that location does play a very big role in why patients with advanced dementia get feeding tubes. 

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The Cultural Distance Between Geriatrics and Palliative Medicine

I just read Chris Feudtner's brief piece, "The Breadth of Hopes," in the New England Journal.  Among other things, the article helps me articulate a difference between care at the end of life (last years, months, days) for many older people and care at the end of life for younger people. The distinguishing characteristic here is whether or not an individual has seen death coming, even distantly, and processed that, even a bit. Not all older people have done so, but many have – I think of the patient in David Reuben's recent JAMA paper who said, “When you’re 83, it’s not going to be 20 years.” And many families have come to a similar point when an older family member develops a life-threatening illness. In contrast, few younger people come to such a point before developing a serious illness. As one of my colleagues says, in geriatrics, our patients are nearer the end than the beginning, and they generally know that. This is not the case for younger people, and in our society, probably never the case for a parent with a previously healthy child.

I wonder if this difference might account for some of the cultural distance between geriatrics and palliative medicine, when such distance exists. Geriatricians may think, I do care at the end of life for many patients, and I do it well. Palliative medicine specialists may think, even geriatricians who provide great care at the end of life just don’t get an important part of palliative medicine, caring for people who won’t live a “natural lifespan,” who have had their hope for a long life dashed, and yet you may still hope for a miracle.

Does this resonate?

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Persistent Vegetative State: An apt description for the media coverage of PVS

The New England Journal of Medicine released a study today revealing some awareness in a minority of patients diagnosed with Persistent Vegetative State (PVS). Researchers used functional MRI tests on 54 patients with PVS or minimally conscious state (MCI). The MCI patient data is interesting but the meat of the study is in the 23 patients diagnosed as being in a persistent vegetative state, meaning that clinically all exams showed no signs of awareness. Four of these 23 patients showed brain activity in areas similar as healthy control subjects when given specific commands. One of these four patients was also able to respond to factual statements correctly by using a technique similar to answering yes-no questions.

My favorite part of the article is in the discussion section:

In the future, this approach could be used to address important clinical questions. For example, patients could be asked if they are feeling any pain, and this information could be useful in determining whether analgesic agents should be administered.

This would be the dawn of a new era where we have new tools to evaluate the symptoms of those who cannot verbally or physically communicate with us at the bedside. The caveat is the most patients with PVS in this study showed no signs of awareness and could not communicate in any significant manner even when placed in the fMRI machine.

Take a guess though what the media headlines focus on:

• Scientists read the minds of the living dead (New Zealand Herald)
• Patients in 'vegetative' state can think and communicate (The Telegraph)
• Brain scan shows awareness in vegetative patients (BBC News)
• Brains of vegetative patients show life (LA Times)
• Study Finds Cognition in Vegetative Patients (Wall Street Journal)

These headlines are just wrong. They give the impression that all patients with PVS are aware and can communicate. In truth, this study showed that a minority of patients with PVS showed some signs of awareness, and those happened to only be in those who suffered from a traumatic brain injury (not from other causes such as anoxic brain injury). To be fair, there were some more appropriate headlines including Newsday with “Some vegetative brains show signs of awareness” and BusinessWeeks “Brain Scans Suggest Some Vegetative Patients May Be Aware”, but overall the media continues to show limited signs of self-awareness when reporting on journal articles.

Reference:
Monti, M., Vanhaudenhuyse, A., Coleman, M., Boly, M., Pickard, J., Tshibanda, L., Owen, A., & Laureys, S. (2010). Willful Modulation of Brain Activity in Disorders of Consciousness New England Journal of Medicine DOI: 10.1056/NEJMoa0905370

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Social Media in Palliative Care Communities: A New Workshop at the AAHPM/HPNA Annual Assembly

A new workshop on the usage of online social media has been added to the AAHPM/HPNA Annual Assembly this March. The session, titled "Social Media in Palliative Care Communities: Developing and Maintaining your Online Presence", will be led by a panel of bloggers from GeriPal and Pallimed and will take place on  Friday March 5th, 7-8:15am (I know, it's early, but it's nothing that a double expresso can't fix). 

The goal of the workshop is to bring people together interested in using social media to advance the field of Hospice and Palliative Care.  The great thing about setting up a workshop like this is that we get to take advantage of the resources that these online networks give us in developing the actual content. One of these tools is a brief survey that Christian Sinclair created to get an understanding of what potential attendees may want from such a session.   So take 3 minutes of your time and either fill out the survey or post comments here or at Pallimed on topics that may motivate you to wake up at 7am on Friday.

-----------------------------------
Here is the abstract for the session:
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Social Media in Palliative Care Communities: Developing and Maintaining your Online Presence.

Time: Friday March 5th, 7-8:15am

Panel:
Amy Clarkson, MD, Kansas City Hospice & Palliative Care, Kansas City, MO (Pallimed)
Christian Sinclair, MD, FAAHPM, Kansas City Hospice & Palliative Care, Kansas City, MO (Pallimed)
Alexander Smith, MD, UC San Francisco (GeriPal)
Eric Widera, MD, UC San Francisco (GeriPal)
Amber Wollesen, MD, Saint Luke's Hospital, Kansas City, MO (Pallimed)

Abstract:
In this session, the panel will present the various social media platforms where palliative care information is being created, commented on, and shared. Understanding the importance of social media to hospice and palliative care as a field is helpful in spreading information consistent with our professional values, dispelling myths, and educating professionals in addition to patients and families. We will present successful examples of palliative care in social media from the perspective on the individual as well as the larger community. Despite the opportunities, there are concerns about privacy, time commitment, and legal risks which will also be addressed. The session will not go into detail on the 'how-to' aspects of specific social media platforms. The initial presentation will be approximately 30-40 minutes with plenty of time for discussion with the audience and panel.

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What a nursing assistant will tell us...if we ask

A friend recently forwarded me an update to a story first reported in the Washington Post in May 2009 about a home care nursing assistant, Marilyn Daniel. (Here’s the update). Using quotes and photographs, the author describes a typical day of visits—from transportation challenges to detailed, moving stories of a few of her patients. It caused me to pause and reflect upon the caregivers closest to our geriatric patients. Nursing assistants provide the greatest amount of direct care to our patients whether in hospitals, nursing homes, or homes. For me, this article aptly notes the challenges of the job, the importance of continuity of care, and the difficulty for home health aides when given a next “case” right after a long standing relationship with a patient ends (or perhaps when hospice comes in and negotiations can’t be reached for keeping the same home health aide). The audience here at GeriPal is one that knows these issues well, but when a photographer/writer captures it so movingly, I can’t help but call attention to it.

It is projected that there will be a 50% growth in home health aide positions in the next ten years because of the expansion of home care for our geriatric population (US Bureau of Labor Statistics). How will we work with home health aides to increase retention? How can we argue for better compensation for such a demanding (physically and emotionally) position? And for those of us involved in geriatric palliative care, how can we ensure that palliative care education is offered and encouraged for home health aides?

In the larger picture, offering continuing education and acknowledging specialized training is a start. I know that programs such as ELNEC-Geriatric include specific content and attention to nursing assistants (self disclosure - I’m part of the team offering this course in Philadelphia in March-link above is for this, but see * below for more details). And in recognition of additional education and experience in palliative care, HPNA (through NBCHPN) offers certification for nursing assistants. These are a start—as was the public attention given to the role in the Washington Post articles. In my own practice, the same as with most of you I assume, I often elicit opinions and thoughts from the home health aides caring for an individual. But in the smaller, every day picture is this enough? How we can better include nursing assistants in palliative care teams? I don’t have the answer, but I do think that as we continue to consider how geriatric palliative care is delivered, we all need to advocate for nursing assistants as valued members of the interdisciplinary team.

* ELNEC-Geriatric Train the Trainer Course, March 9-10, Philadelphia, PA
Nursing CEUs (12) offered and we’re working on the Social Work CEUs
Sponsored by University of Pennsylvania School of Nursing, Penn Wissahickon Hospice and NewCourtland.
http://www.pennmedicine.org/homecare/conference/end-of-life-nursing-education/
.

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Mammograms in Women with Dementia: What's the Problem?

A study in the American Journal of Public Health examining mammogram use in older persons found that 18% of women with severe cognitive impairment had received a screening mammogram in the prior 2 years. These women had an average life expectancy of 3.3 years. Since one needs to live at least 5 years to benefit from screening mammography, most of these women had no chance of benefiting from mammography, but were subjected to all the potential harms.

The authors of this study, which included our UCSF colleagues Kala Mehta and Louise Walter, describe this as a good news-bad news finding. The good news was that women with severe cognitive impairment were much less likely to get mammograms. So doctors are to some extent individualizing screening decisions. The bad news is that this still represents a very large number of potentially harmful mammograms.

On the Newsweek website, Sharon Begley provides an excellent commentary on this study. This commentary was a pleasure to read. It explained complex issues in clear terms. It was a refreshing change compared to the simplistic discussion from much of the press during the recent mammogram controversy. It is instructive to read some of the comments on Ms. Begley's piece. It appears that there is often an instinctual reaction to any recommendation not to do a cancer screening test to assume the motivation is rationing, or a desire to save money. However, the reason not to do mammograms in women with dementia is that they are likely to do harm. The fact that this harm also costs money is just an added insult.

In order to help our patients avoid care that is more likely to hurt them than help them, it is important all of us be able to explain to our colleagues why mammograms are not a good idea in women with dementia. Here is a brief outline of that explanation:

• Mammography frequently finds abnormalities that are not cancer and need further evaluation. The fear caused by these findings, and the stress from the evaluation can be debilitating for healthy women. For women with dementia, the anxiety and stress can be debilitating. And with dementia, this stress is also felt by overworked caregivers.

• However, contrary to common perceptions, the most serious harm from mammography in women with dementia is not false positives, but actually finding a clinically insignificant cancer. The concept of clinically insignificant cancer is not understood by the public. A clinically insignificant cancer is a tumor that if undiagnosed would never cause symptoms in the patient's lifetime. The type of tumors for which mammograms are beneficial will generally be clinically insignificant in women with dementia. Without mammography they will go undetected and not cause problems. But if found, these women will often be given surgery and other invasive therapy. To subject someone with dementia to invasive therapy that has little chance of benefiting them is very unfortunate. Dr. Walter has previously shown that in some cases, this treatment leads to devastating complications, including one case report of a non healing wound infection, and another case of a post-operative stroke.

• Perhaps most concerning is that time spent focusing on nonhelpful care diverts focus from the type of care women with dementia really need. At GeriPal, we have previously discussed how primary care physicians are uncomfortable caring for patients with dementia. It is well established that the quality of care for people with dementia is poor. Interventions that could improve functioning and quality of life are often not done. As we have also discussed, the needs of caregivers get ignored.

Perhaps the most fundamental problems with ordering screening mammograms in women with dementia is that it suggests check box medicine is being provided, and therefore the real needs of the patient and her caregiver are not being attended to.

Our health system fails frail elders with dementia. There is so much more that needs to be done for them. Contrary to those who raise the Rationing charge when it is suggested that women with dementia not get mammograms, this is actually about doing more for these patients, not less. We can start by not doing tests that are more likely to hurt our patients than help, and focusing on what these patients and their caregivers really need.

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Morphine Sulfate oral solution is now FDA approved

Morphine sulfate oral solution is now FDA approved thanks to a concerted effort by many in the hospice and palliative care community. To give a little history, in March the FDA issued warning letters to nine companies telling them to stop manufacturing (within 60 days) 14 unapproved 'narcotics' that are used to treat pain, including morphine oral solution. As you can imagine this created quite a little stir in the palliative care community and in our blogosphere.

AAHPM, NHPCO, and the HPNA leaders came together, as well as online social networks that included blogs like Pallimed and networks like facebook. They expressed strong concern that taking liquid morphine off the market would result in hardship for terminally ill patients and their caregivers. Within 9 days of the announcement the FDA reversed their decision. At that point the FDA agreed to allow companies making and distributing the unapproved drugs to continue, until 180 days after any company receives approval to manufacture a new morphine replacement drug of the same dosage.

Yesterday a company finally did get approval. The FDA approved Roxane Laboratories' Morphine Sulfate oral solution for relief of moderate to severe, acute and chronic pain in opioid-tolerant patients. The approved concentrations are available in 100 milligrams per 5 mL or 20 milligrams per 1 mL. This news does give me some pause as this is now the only FDA approved morphine sulfate oral solution available at this concentration. I worry that in 180 days we may be facing manufacturing shortages of liquid morphine.  Hopefully another press release will come soon addressing these concerns.

Thanks to everyone for putting up a united front on this matter. It shows that a group of people can come together and make a difference!

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How do you treat your elderly clinic patients for chronic pain?

As noted on the Pallimed blog, a study published last week in Annals of Internal Medicine reports on adverse events associated with the prescription of opiates for chronic non-cancer pain.

In brief: they studied 9940 HMO patients (mean age 54) who received 3 or more opioid prescriptions within 90 days for chronic noncancer pain between 1997 and 2005. They used ICD codes with subsesquent chart review to identify "opioid-related overdoses", and found 51 events, of which 6 were fatal. After stratifying by categories of opiate exposure, they estimated that annual overdose rates were 0.2%, 0.7%, and 1.8% among patients receiving less than 20 mg, 50 to 99 mg, and more than 100 mg of opioids per day, respectively. (For more journal-club style details and analysis, check out the Pallimed post, which is good reading for those with a little more time and interest.)

I'll confess that when this article caught my eye, one of my first thoughts was "Argh! Now it will be even HARDER for me to persuade my elderly patients to try a little low-dose opiate for their severe arthritis, when all else has failed to control their pain."

Yes, it's true. I have some of my arthritic elders taking a little daily opiate for their pain: it allows them to walk around a little more and maintain their function, or so I tell myself.

But what do the rest of you think? In particular I'm curious to know what the primary care clinicians among you prefer to use for chronic noncancer pain in frail elders. And how easy do you find it to address the patient's (or often, the family's) worries about the risk of addiction or overdose? Will this latest study change your practice?

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"Do not punctuate the end of your life with a senseless act of brutality!"

Words have power. Language has power.

The words we use may comfort or shock, allay or provoke, sooth or batter. Words often imply layers of meaning that are not explicitly articulated, yet rest beneath the surface:

“I worry that time is short for you” (You are dying) (I care about you)

“I wish we could have done more” (Nothing would have changed her death) (I am on your side)

“I hope with you that you’ll get better, but I think we should prepare in case things don’t go as we hope” (You are not getting better) (I support your hope)

I can think of no situation in which there is greater variation in how our choice of words varies than how we explain cardiopulmonary resuscitation (CPR). Many people, including me, vary the language we use depending on our recommendation for treatment. Some use more drastic language than others. Here are some examples I have encountered, again with possible implied meanings in parentheses:

“Would you like us to restart your heart if it stopped beating?” (Please say yes) (I’m just asking as a formality)

“Would you like to allow us to let you to die naturally?” (Saying no goes against nature) (We have an unnatural power over life and death)

“Would you like us, in what would naturally be your final moments, to press on your chest and break your ribs, shove a tube down your throat and poke you with needles in lots of places in a chaotic attempt that has a very small chance of giving you more time to be technically alive but unlikely to ever return to meaningful communication with others?” (Please say no) (CPR is horrific) (I don’t want to have to do this to you)

“Do not punctuate the end of your life with a senseless act of brutality!” (You’re crazy if you say you want CPR)

Using persuasion to argue for something we believe is in a patient’s best interest is ethically permissible. Coercion - the use of force or threats – is not. Guy Micco, one of our contributors and a physician ethicist in the East Bay, talked with a philosopher who preferred the terms “influence” and “undue influence.” "Influence" is, of course, permissible - the line not to cross is the “undue” one.

Where do you see the line with these statements? What language do you use? Do you find yourself varying the language you use based on your recommendation for or against CPR? Does “unbiased” language exist?

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Post Traumatic Stress in Late Life

Over the past year, I have had several 80+ patients, combat veterans of WWII, who have had very significant symptoms of post-traumatic stress. These symptoms included nightmares and flashbacks related to their military service almost over 60 years ago. In several cases, the patient told me of these longstanding symptoms after I had cared for them for several years. In another case, I learned of these symptoms from a spouse.

I am not so sure why it did not occur me to ask about post-traumatic stress. Without thinking about it much, I guess I just presumed that if they had no previously documented history of post-traumatic stress symptoms it would not present itself decades later. As I have thought about this, I have concluded that my view here was incorrect, and that I needed to be more alert to the possibility of post-traumatic stress in my older Veteran patients.

A very important study in the December issue of the Journal of the American Geriatrics Society , led by Dr. Lance Rintamaki, demonstrates the importance of thinking about post traumatic stress in older persons. They surveyed 157 WWII Veterans who had been prisoners of war. Over 60 years after the war, many of these Veterans had significant symptoms of post-traumatic stress, including flashbacks, insomnia, and nightmares. A signficant number (17%) met the diagnostic criteria for post traumatic stress disorder. However, the most notable finding, is that these symptoms of post-traumatic stress often got worse after retirement. Over half of the Veterans reported that they think more about their POW experience since they retired, and over 40% stated that their recollections have become more distressing since they retired.

One can not know for sure if these results have implications for our older patients who have had not had military traumas in early life. By examining this issue in POWs, this study focused on a quite severe trauma. (Many of the subjects were tortured or witnessed executions). Still, I think it is likely that this study does have more generalizable relevance. Many of our older patients have had suffered severe physical or psychological trauma earlier life. I can't think of any reason why the mechanisms that cause late life resurgence of military stress would be any different for civilian stress.

What might these mechanisms be? In an outstanding, must read editorial, Dr. Jules Rosen suggests that less structured time in retirement, coupled with some of the stressful events of aging, such as loss of spouse or friends and declining physicial health, could precipitate the reemergence of post-traumatic stress decades after the actual event. I think it may also be the case that declining cognitive function could inhibit the ability of the older brain to suppress traumatic memories.

Dr. Rosen's editorial gives some excellent advice about the recognition and management of post-traumatic stress in late life. As with my patients, many will be reluctant to report symptoms of post-traumatic stress. You must ask. Many patients with flashbacks and nightmares may just request sleeping pills. It is important to be alert to the possibility of post-traumatic as one of the causes of sleep disturbance in the elderly. Also, some with post-traumatic stress may self-medicate, and the new development of substance and alcohol disorders in the elderly should alert one to the possibility of post-traumatic stress.

Dr. Rosen notes that in many cases, a sympathetic physician who assures their patient that late life symptoms of post-traumatic stress are common and not a sign of weakness may be the only therapy a patient needs. Patients whose symptoms impair daily functioning or lead to alcohol or substance disorders should generally be referred to a specialist.

Dr. Rintamaki and colleagues note that, "clinicians working with individuals who experienced significant trauma in the past must be mindful of these phenomena and their tendency to increase in later in life. Despite the signficance of prior trauma, clinicians tend to focus on physical health while overlooking psychosocial problems and their effect on patients' lives, particularly when working with elderly patients."

This paper will make me more alert to the possibility that severe early life trauma may be causing significant distress in my older patients.

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