Thursday, April 23, 2015

Being Superman

by: Amy Getter, a hospice nurse who blogs regularly at

My all-too-frequent experience going from house to house visiting the ill, aging population is this: many and perhaps most people being served in our communities are sadly lacking in actual advocacy. I often feel like I only apply “Band-Aids”. (Recent case in point; explaining the treatment choice to an 84 year old patient who didn’t realize the doctor’s intervention was permanent, something for him to manage at home. He asks me, “You mean I have to live like this?”) In every medical setting the average lay person while preparing to go home from their latest hospitalization needs an interpreter to understand what the hospitalist who just left their room was saying. Discharge instructions seem to fall on overwhelmed ears. And having worked in the circus of admissions and discharges of chronically ill patients in the hospital setting, I know the nurse/social worker/discharge planner/palliative care team must be: “Faster than a speeding bullet, more powerful than a locomotive and able to leap tall buildings in a single bound”.

I spoke with an elderly woman this past week about going back to the hospital if her symptoms worsened again. She was clear that if she was dying she would want “no heroics”, but was uncertain if she would in fact want to pursue hospitalization, saying “only if it was easy to fix me”. I thought to myself; how easy is it to fix anyone at 89 years of age, and where do the heroics start and stop? Our conversation had only just begun! Before trying to fix all the chronically ill elderly people who live alone, (or with their elderly partner who is also frail and elderly), who enter the revolving door of emergency room visits and frequent hospitalizations- let’s have a REAL CONVERSATION. It’s not just about getting them out, or keeping them out of the hospital. Far too many small, rural hospitals don’t even have a palliative care team to begin these talks. Incomplete knowledge, lack of understanding and decision making ability within a complex medical system is too often the norm, (and patients have things done “to them” in the “best interest of the patient”).

Many of my elderly patients have not talked to each other, their families, or their doctors, or are aware about any of the following: What are all the options for care, how much treatment do they want to pursue, including aggressive care to prolong life, or the “simple procedure” that the doctor advocates but in fact is life prolonging, and what is the quality of life that is important to them? These are conversations that need to happen now, continue at the next primary care doctor appointment, and be written in Advanced Directives and POLST forms so choices are made before the next 911 phone call. Hospital personnel have the chance for authentic conversations about completing advanced directives, (please don’t just hand the paperwork to the 88 year old spouse of the patient who is being discharged home with another CHF episode. How many of my homebound patients show me the advanced directive paperwork, still empty, at my first visit?...TOO MANY!)

Until everyone understands what the hospitalist is talking about when he delivers the prognosis for their multiple system failure and advanced disease, with the approaches and treatments that can be initiated, people will continue to receive futile, unwanted treatment and end of life care will include more life prolonging procedures, prolonged suffering, and we will continue in the merry-go-round of “medicalization” of the dying process with a lack of real advocacy.

This means, yes, we need palliative care consults, but also, at every opportunity…be mindful, to listen, understand, share and help people actually comprehend and address their choices, and what quality of life means to them, and ensure their wishes are written down, and followed. We have to at least try, at every opportunity, to be engaged in the never-ending battle for truth and justice, changing the world… one patient at a time.

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Tuesday, April 21, 2015

Not All Hospices are Alike

by: Patrice Villars

We all want the best possible end of life care for patients, our families, ourselves. Most of us don’t have a clue that Not All Hospices are Alike.

Here is one story (patient identity and characteristics have been changed to preserve anonymity):

Brianna, a 61-year-old woman with metastatic esophageal cancer and renal insufficiency, had been served by our outpatient palliative care clinic for over two years, alongside our oncology team. She had been previously referred to a home health agency by her primary care provider’s RN for assistance with medication management, physical and occupational therapy. So when the time came to transition to hospice care at home, the RN referred Brianna to the home health agency’s ‘sister’ organization, Hospice X. Easy peasy.

Not long after she was admitted, I started to receive phone calls from her partner (I’ll call him Mr. Brianna) re. unsatisfactory pain management and requests for opioid medications refills the hospice agency, per Mr. Brianna, didn’t cover., specifically, her methadone for long-acting pain control and oxycodone for breakthrough pain. When I called Hospice X to inquire about her condition and discuss her plan of care, I was unable to reach anyone who had access to her record or knew her situation. The hospice supervisor, upon my request, returned my call to discuss my concerns. She gave me a run down on Brianna’s vitals, reported that her pain was controlled, then read me a couple lines about what hospice is supposed to cover per Medicare guidelines. Then she ‘looked up’ whether or not methadone or oxycodone was covered. Clearly, I was talking to someone without expertise in hospice care or the hospice Medicare benefit, much less anyone who could work with me to develop Brianna’s care plan.

Within a few hours, I received a call from Hospice X’s medical director. “I’m a palliative care doctor… medical director of Hospice X”. We discussed my concerns regarding Brianna’s experience of her unsatisfactory symptom control. She was now taking almost 300mg of oral methadone a day. “What is your plan”, I asked, “for symptom control when she is no longer able to swallow safely at the end of life?”

“I guess I should think about that”, he replied. OK, this is when I went internally ballistic and knew that was not a ‘hospice’ agency that understood end-of-life care. He started to ‘educate’ me that liquid morphine is used at that time. (Fill in your own personal outraged reaction here.) After an easy Google search of the physician, I learned he was not board certified Palliative physician (I suppose it would have been worse if he were) and that he had a disciplinary action against him from the Medical Board within the past year for inadequate record keeping.

Long story short, after numerous concerns by Ms. and Mr. Brianna, including:
  • Every time a nurse came to the house, s/he brought someone who sat in the car during the home visit. (HIPPA violation?), making them both feel unsafe.
  • Hospice X wouldn’t refill her oxycodone (not on their formulary, despite renal insufficiency with baseline creatinine of 3.0).
  • The nurses counted her pills at every visit to make sure she didn’t take too many, which made her feel like she was doing something wrong or bad if she needed more to control her pain.
  • Her symptoms (pain, nausea, insomnia) were getting worse, not better.
Brianna and her partner tried to work with Hospice X; they felt uncomfortable ‘firing’ them and transitioning to another agency. Brianna liked one of the nurses. Mr. Brianna, with our strong recommendations, finally let hospice X know they were dissatisfied and wanted to change hospice agencies to Hospice SH. Hospice X discharged (not transferred) her, stating she did not meet hospice eligibility, as she wanted “aggressive” treatment, inconsistent with the hospice benefit. (Which, I suppose, is partially true. She wanted aggressive pain and symptom management.)

Finally, I was able to get her admitted to Hospice SH (super hero). At the second home visit, the Hospice SH nurse called me to discuss transitioning her care to their (beautiful) inpatient hospice house for patients who require acute symptom management at the general inpatient (GIP) hospice rate. They had already made two visits to the home that morning, offering intensive symptom control, emotional support to Ms. and Mr. Brianna, and in-depth discussions about potential settings for ongoing care.

I have been blessed to have worked with two amazing hospice agencies in my career and have high standards. – high, achievable standards. The hospice world has changed dramatically since I left that work ten years ago. In my institution, all nurses, discharge planners, social workers, and physicians can refer to any hospice agency. Hospice Xs and Hospice SHs look the same to most families and health care professionals unfamiliar with the nuances of hospice and end-of-life care needs. In my experience, many hospice Xs market well – flyers, lunches, office paraphernalia with logos, etc, offering programs that claim to smoothly transition from home health to hospice. These programs may serve the referring providers well, but not necessarily the patients/families.

Be careful out there. Not All Hospices are Alike.

Here are some links to help with choosing an agency:

Photo Credit: ©2014 Nancy Lundebjerg 
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Thursday, April 16, 2015

Aging in Angola Prison

Our society is faced with the dilemma of aging prisoners, and some predict this will become one of the most important factors in managing the criminal justice system. Elderly inmates represent the fastest growing segment of federal and state prisons, a trend which is expected to continue. Hospice programs are growing in American correctional facilities, with access to health care professionals and efforts to provide a dignified death. In 2010 I took a road trip to photograph aging prisoners in one of America’s most notorious prisons, Louisiana State Penitentiary, also known as Angola Prison. 

I heard about the penitentiary’s special programs for the elderly including a treatment center and hospice, and received permission from Warden Burl Cain to tour the facility with my camera. It was a 150 mile drive from New Orleans through Mississippi Delta wetlands to get to the place that was surrounded by razor-topped chain link fences and sentry towers. Before passing through the gates, armed guards searched my car and confiscated my maps. At 18,000 acres, the prison is the largest in the nation, housing over 5,000 inmates. It is roughly the size of Manhattan Island and surrounded by woods, swampland, and the Mississippi River. Nearly 74% of Angola’s prisoners are serving life without parole.

To accommodate its aging demographic, the Louisiana State Penitentiary implemented special programs to house and care for the frail and sick, and accommodate those who are dying. Inmates volunteer in the hospice unit, build coffins, and even provide burial services. The R. E. Barrow Treatment Center is the medical unit of the penitentiary, with an open ward of twenty-four beds which includes those assigned to hospice, plus special rooms reserved for prisoners who are dying. There are two LPNs and one RN available around the clock. When I visited, the census included prisoners with cancer, degenerative neurological illness such as ALS and stroke, and end-stage COPD. 

The Center maintains a volunteer program where inmates have the opportunity to feed and assist those who are dying or physically impaired. I spoke to Scotty, a volunteer serving two life sentences for double murder. He says the experience working with the aged and dying has humbled him and brought him closer to religion. I had a chat with an elderly inmate who couldn’t walk. He told me how in his youth he stabbed someone to death in a bar with a knife he kept in his boot. 

After visiting the Treatment Center we drove past fields with prisoners tending crops, with armed guards on horseback watching over the workers. My guide brought me to the unit which housed older and physically dependent prisoners. This unit had double bunks, with physically impaired prisoners and those needing adaptive devices assigned to lower beds. This is where I met Mr. Bourgeois, a ninety-two year old sex offender who was in for life plus thirty-five years, and the oldest prisoner in the penitentiary.

Mr. Bourgeois had a quick smile and seemed kindly and gentle, but a closer look revealed numerous scars etched on his scalp from fights during many years in prison. Mr. Bourgeois told me his biggest fear was being beaten up by younger inmates. The National Institute of Corrections has cited vulnerability of abuse and predation as one of the many challenges of a graying prisoner population, contributing to emotional stress and physical deterioration, and an observed phenomenon of accelerated aging.

Experts say that as a person ages they become less likely to commit crimes. Some criminologists refer to a “criminal menopause,” arguing for early release of older inmates citing potential cost-saving by allowing them to serve the remainder of their sentences in the community. However, the value of geriatric release programs must be weighed against public safety and costs related to other programs for their care. Because elderly criminals may be unable to care for themselves in the community, society would still be burdened by the cost of care even though they may no longer pose a threat.

Although he appeared frail, Mr. Bourgeois had surprising strength – perhaps nurtured by a life of crime and incarceration. As I left we shook hands, and I was startled as he nearly crushed my fingers, his face betraying a pleasured grin. As I looked into those eyes of stone I felt reassured that two very large uniformed officers were at my side.

* * * * * * * * * * * * * *

Follow me on Instagram @jlevinemd

Dr. Jeff Levine’s photography exhibit entitled “An International Celebration of Aging” will be at the University of Michigan Medical Center from June to August, 2015 as part of their Gifts of Art program.

References for this post include:

Aday, RH. Aging Prisoners: Crisis in American Corrections. Praeger Publishers, 2003.

End of Life in Corrections

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Tuesday, April 14, 2015

Healthy Dying... An important part of healthy aging

By: Paul Tatum  @doctatum

This year the Obama administration will convene the 2015 White House Conference on Aging (WHCOA).  The WHCOA has historically been viewed as a catalyst for improving policy on aging. This year's conference includes one laudable goal of improving "Healthy Aging."  This month's WHCOA blog makes the case as follows: "Older Americans are calling for a shift in the way we think and talk about aging. Rather than focusing on the limitations of aging, older adults across the nation want to focus instead on the opportunities of aging. Older adults are seeking ways to maximize their physical, mental, and social well-being to remain independent and active as they age."

The WHCOA has focused on important areas to improve aging and has highlighted key areas:  Promoting Health and Prevening Disease and Injury, Optimizing Cognitive Health, Optimizing Behavioral Health, Maximizing Independence at Home, and Promoting Community and Civic Engagement.

So the question that I have if we are shifting the way we think and talk about aging is this:  Isn't it time that we make Healthy DYING a part of Healthy Aging?"
If we are going to maximize well-being don't we need to improve the quality of care for the dying (and yes by that I include those with serious illness who are dying a few years from now)?  And isn't the WHCOA a key place to begin this conversation and finally move beyond Death Panels rhetoric?

The WHCOA blog Policy Briefs states, "The Administration recognizes the need for a culture change in how we manage chronic conditions..."  This is absolutely correct, and excellent advance care planning for all patients and early provision of palliative care are two key elements of culture change that must be discussed openly.  I propose that palliative care and advance care planning be added as key elements of the WHCOA.

Do you agree?
Here is your chance to act.
The April WHCOA blog has called for a national conversation about the following questions:

• What do older adults and their families need to manage their chronic conditions and to optimize their physical, cognitive, and behavioral health?

• How can we ensure that older adults know about, and take advantage of, the preventive services available to them under Medicare?

• How can we provide more opportunities for older adults to stay engaged and connected to their communities?

• Are there current healthy aging programs or policies you think are the most or least effective or potentially duplicative?

• What steps can help Americans to live safely and comfortably in their homes and communities as they age?

• What additional actions could help ensure that older adults of all backgrounds can equally enjoy a long, productive, and healthy quality of life?

You can ask them to include a specific focus on advance care planning and palliative care. Or make a comment about the need for palliative care education for all providers.  Or discuss the importance that advance care planning can make and the policy needs that must be addressed.

Go to  the WHCOA website  and make your voice heard.  While comments don't appear on the site, they are collated under the public comment section of the main WHCOA website.

 Let's be sure that palliative care and advance care planning are included as important components of the conversations of the WHCOA.

by: Paul Tatum
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Sunday, April 12, 2015

Statins at the end of life, revisited

The recently published statin-discontinuation trial  has been celebrated in the palliative care community.  It’s message is clear – go ahead and stop statins in patients nearing the end of life. 

Or is it?

I’ll offer a contrarian viewpoint: the trial does not reliably prove that people are helped by stopping statins in the final year or so of life. 

Why this “downer” message?  It’s because the study had insufficient power to assess if there are clinically meaningful differences between people who were randomized to stop their statin and those who were randomized to continue.  This is no fault of the investigators; the study was carefully planned and thoughtfully designed.   However, participants lived three times longer than expected (an average of 9 months, compared with a projected average of 3 months).  As a result, the original sample size projections and outcome analysis were jettisoned.  In consultation with the trial’s data safety and monitoring board, a new outcome of 60-day mortality was substituted. 

The results showed that 23.8% of people who stopped statins died within 60 days, compared with 20.3% who continued statins - a difference of 3.5%.   In other words, if you took 100 people nearing the end of life and stopped their statin, 3 ½ more of them would die because you stopped the statin than if you had continued statin therapy.  But, because the sample size of the study was relatively small (381), there is a lot of uncertainty in that estimate.  The true effect of discontinuing statins could be anywhere from causing 3 ½ fewer deaths to causing 10 ½ more deaths.   (This is based on the stated 90% confidence intervals of -3.5% to 10.5%) 

What does this mean in plain English?  Stopping statins may cause more people to die.  It may cause fewer people to die.  It may make no difference.  We just don’t know.   In contrast, it is incorrect to say that this trial proves that stopping statins has no effect on mortality.

Fortunately (or not), death is not the only outcome that’s important to people with advanced terminal disease.  The trial revealed some interesting findings around quality of life.  People who stopped statins had better “total” quality of life on a score-based measure.  However, the main factors that contributed to these better scores were perceptions of having better support and well-being, whereas physical and other elements of quality of life were no different.  Similarly, physical symptoms and performance status were similar between people who continued vs. stopped statins.   It’s hard to know what to make of these results; they are intriguing, but hardly an unequivocal endorsement for stopping statins.

This is not to say that statins are harmless.  Their side effects are well-documented, although the frequency of perhaps their most important side effect – a feeling of muscle aches and malaise – has been very difficult to pin down.  (These symptoms occur reasonably often, but in many if not most cases they are not due to statins).  There has also been concern that statins might worsen cognitive function by interfering with lipid metabolism in the brain.  Recent reviews  on this topic are reassuring, although statins in late life probably do not confer cognitive benefits either

Does the lack of a clear positive result from the statin discontinuation trial mean that we should continue statins for all people with advanced terminal illness?  Of course not.  This decision should be guided by the patient’s goals of care, their actual experience with and potential side effects from statins, and so forth.  Most studies do not provide an unequivocal answer to clinical questions, and this study is no different.  Yet, it does provide useful information that deepens our understanding of the potential benefits and harms of statins in this setting.  For that we should thank the investigators and all of the people who participated in the trial.

by: Mike Steinman
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Friday, April 10, 2015

Potpourri from clinical work VIII: TVs, tissues, timing, losing stuff, & no to hospice

by: Alex Smith, @alexsmithMD

This is the 8th installment in my occasional post-being-on-service-digestion-of-what-just-happened-via-blogging potpourri from clinical work series.
  1. TVs.  Our palliative care consult service spends it days turning off TVs.  In rooms of patients with advanced dementia and the TV is on and loud and right in front of their face.  Who turned it on?  In the ICU rooms of patients with delirium, blaring over the other beeps and noise.  Asking the sitter/CNA to turn it off please.  I think TVs are a hazard to the mental health of hospitalized patients, particularly those who have cognitive impairment, delirium, or are seriously ill.  Why are they always on?  We are the turn-off-the-TV palliative care service.
  2. Tissues.  In palliative care we generally teach: "When the patient or family member starts crying don't reach right away for the tissues.  It sends the wrong message.  It sends the message that you can't deal with the sadness of this moment and want them to stop crying."  But it's also a social grace.  It feels awkward to not offer tissues.  I don't know what patients/families think is worse, offering or not offering.  
  3. Timing.  There is a huge movement in palliative care to get the consults in early.  Mostly this is in the outpatient setting, where early outpatient palliative care seems superior to usual (late) palliative care in terms of quality of life and survival.  In the inpatient setting, where I work, it might be a little different.  I generally rail against being called too late - as in "Can you join for the family meeting right now?"  But sometimes we get called in too early - as in, the workup is no where near complete, or we have no real issue yet but know one will arise because the patient has serious illness.  Consults should have a purpose and question.  I know saying this may sound dangerous, but just as palliative care consults can and often do occur too late, they can also occur too early.
  4. Losing stuff.  Why is it that so many of my patients lose their stuff in the hospital.  Hearing aids. Glasses.  Wallets.  Cell phones.  Important stuff people!  Can't we, in 2015, devise a system of keeping patient's stuff with them?  Perhaps a lockbox (like in a hotel) with a code patients can set and a master code the nurse manager can use if the patient forgets (h/t to Erin Bowman for idea).  I suspect this leads to more frustration and poor quality care - "I can't hear you or see you, they lost my hearing aids and glasses" - than we realize.
  5. No to hospice. What do you say to patients who don't want hospice?  I had 2 patients and one family member who didn't want hospice.  The goals of care were in line with hospice, but they had a strong negative reaction to the term.  Both patients would not explain why they didn't want hospice, despite extensive questioning, to the point where it would jeopardize our relationship to push further.  The family member was from another country where hospice had a different meaning that she could not let go of.  Perhaps this is just an anomaly, but I've not experienced so many negative perceptions of hospice in the same week previously.  Hopefully this is not a trend.
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Thursday, April 9, 2015

Friendship Line: nation's only 24-hour hotline for older adults in jeopardy

Dear GeriPal community,

We write today with a different sort of post.

We realize direct solicitations are not the intended purpose of GeriPal but this time we appeal directly to you as our peers and readers to help a national service at risk of being shut down. To each of you who has experienced or laid witness to depression, loneliness, grief, and isolation among older adults, we ask that you consider a contribution to help support the Friendship Line.

The Friendship Line is the nation's only toll-free, accredited, 24-hour suicide prevention hotline and warm-line for seniors and disabled adults. The Friendship Line makes and receives more than 100,000 calls every year, providing a lifeline for thousands of lonely, isolated older adults, who are 2-3 times more likely than teens to commit suicide. For many of these clients, the Friendship Line is the only human connection they can count on.

Unfortunately, this vital program is facing a significant challenge. The Friendship Line recently lost two-thirds of its funding, putting the program’s future in jeopardy. The Friendship Line is mounting a significant effort to identify long-term partners and sponsors to restore lost funding to maintain the existing program, and to expand and improve the Friendship Line.

But that will take time, and callers need help right now. Carla and I have been privileged to work closely with the leadership and volunteers of the Friendship Line. The Friendship Line has been an invaluable resource for our patients who are lonely, sad, anxious, or just need a warm, caring person to talk to.

In addition to receiving calls, the Friendship Line makes calls out to seniors and adults with disability. As most of us know, mental health care and services for seniors, especially those who are homebound can be non-existent. And many seniors and disabled adults experience loneliness. The Friendship Line helps connect individuals to trained volunteers who provide innumerable hours of telephone support.

On behalf of the volunteers and staff of the Friendship Line, we're asking for your help.

Please visit this site to learn more about the Friendship Line and to make a donation.

We are grateful for whatever you can give. Even if you can't donate, please share this link with others on Facebook, Twitter, and email. Together we can ensure that the Friendship Line remains open 24/7, and there will always be a friend at the other end of the line.

Helen Kao and Carla Perissinotto
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Sunday, April 5, 2015

Graceful Aging in Easter Hats

It’s a welcome sign of spring in Manhattan when the Easter Parade comes to Fifth Avenue. This parade is not one of marching bands and drummers, but rather it’s made up of locals and tourists strolling and smiling, many sporting hats made especially for the occasion. The vehicular traffic that normally clogs the street is blocked off for the joyful celebration that lasts most of the day. 

Now that I’ve been invited to post on the GeriPal blog, I went there to photograph men and women of a certain age looking to show off their finest millinery in celebration of the holiday and the season. Despite what you see in this selection, it was actually an event for all ages. Not only was there a diversity of humans, but also of canines and some other species as well. Looking at the faces takes me back to the reasons I went into geriatrics many years ago, I hope you feel the same.

Happy Spring everyone!

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Dr. Jeff Levine’s photography exhibit entitled “An International Celebration of Aging” will be at the University of Michigan Medical Center as part of their Gifts of Art Program from June to August, 2015. Follow him on Instagram @jlevinemd.

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Tuesday, March 31, 2015

Celebrating Old Age at the Burning Ghats in Benares

Benares, also known as Varanasi, is the holiest city in India and one of the oldest living cities of the world.  It is built on the banks of the sacred river Ganges – a place of pilgrimage and home to Shiva, the volatile and compassionate god who is known as the destroyer of worlds.  It is in Benares where one can obtain “moksha,” when the soul is freed from the cycle of reincarnation through birth and death.   Hindus bring their dead to this city for cremation on the banks, and spread the ashes into the river.  There are even hostels where the elderly can come to die.  As a geriatrician I became interested in these customs, and traveled to Benares to learn and observe.  On the banks of the Ganges I unexpectedly found a celebration of old age.
To get to the river you need to wind through ancient alleys only a few feet wide, lined with beggars and shared with sacred cows that wander freely.  Along the banks are Ghats, or large sets of stairs that lead to the water.  The Ghats are where people gather to bathe, pray, socialize, and do laundry.  There are more than 100 Ghats along the Gangese River in Benares.  Each has its own symbolism and special atmosphere, but the air in all of them is charged with spirituality and scented with incense. 

Then there are the Burning Ghats – places where families bring their dead for cremation.  The body is draped in a saffron colored robe and garlands of flowers and carried on a litter to a platform on the bank, then covered with wood imported from other parts of India.  On the roads into the city I saw trucks bearing dead trees and bodies strapped to roofs of cars, all destined for the Burning Ghats along the Gangese.

The Burning Ghats are serious places where photography is frowned upon, so I found a comfortable spot some distance away and set up my telephoto lens.  This was fine with me because the acrid smoke burned my eyes and made the air difficult to breathe.  I spent hours watching and taking notes, and when night fell the fire and smoke took on a supernatural, unearthly aura.  As the time passed I noticed occasional cheers rising from the direction where the cremations were taking place.

The cheers were joyful and triumphant, sometimes accompanied by what sounded like pounding drums.  The sounds rose quickly into the night sky then faded away.  This struck me as curious and unreal, coming from a location where funerals were taking place.  It happened again and again, and finally I turned to my guide and asked him about it.

“When a very old person goes, we celebrate and cheer for a life well lived,” he told me.  The glow and smoke from the fires suddenly took on new meaning for me with this brief but unexpected celebration of old age. 

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Dr. Jeff Levine’s photography exhibit entitled “An International Celebration of Aging” will be at the University of Michigan Medical Center as part of their Gifts of Art Program from June to August, 2015.  Follow him on Instagram @jlevinemd.  

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Thursday, March 26, 2015

Stopping statins in serious illness doesn't change survival...or does it? Sorting out the message

by: Alex Smith, @AlexSmithMD

We've talked previously on GeriPal about Dumb Medicine: continuing preventative treatments near the end of life.
  • In one study of patients diagnosed with advanced incurable cancer and an average life expectancy of less than 2 years, up to 15% were being screened for another cancer that had no chance of harming them in their lifetime.
  • In another study of women with dementia and an average life expectancy of less than 3 years, 18% were being screened with mammograms for a breast cancer that if detected, would not harm them in their lifetime.  
Key features of both of these studies:
  • Preventive treatments have a lag time to benefit.  Cancer screening is designed to detect slow growing cancers that will not cause symptoms or harms for about 10 years.
  • The harms of testing are real.  False positives are no joke.  Detecting a clinically insignificant cancer can lead to tests and treatments (think biopsy, surgery, chemotherapy, radiation) for a cancer that is unlikely to harm the patient in their lifetime.
  • The focus on prevention displaces time that could be spent on supportive and palliative interventions.
This week, we have a new study by the fabulous palliative care researcher Jean Kutner and colleagues to add to this list.  I think the new study pushes the envelope of Dumb Medicine.  It's self-evident that we should not continue cancer screening for patients with life expectancies of 2-3 years.  The new study examines statin use for patients with a life expectancy of less than a year.  

Now statins are a slightly different beast from cancer screening.  They are preventative, certainly.  They have a lag time to benefit on the order of years.  They have harms, ranging from pill burden to cost, and risks, ranging from myopathies to rhabdomyolosis.  

But in the back of our heads, maybe we're wondering, might this medication be preventing a heart attack, or a stroke?  Maybe it's not so dumb to continue it after all.

Now we have new evidence that demonstrates that stopping statins (probably) doesn't change survival and likely improves quality of life.

Some of the aspects of the study are really important, yet because they're buried or in "researchees, i.e. the language of researchers" they are inscrutable to the average reader.  
  • 381 subjects with a life expectancy between a month and a year, about 1/3 in hospice, were enrolled from 15 sites in the Palliative Care Research Co-operative (PCRC).  The PCRC alone is BIG news.  You know how cancer trials are conducted in these research networks?  Now we have one for palliative care research! (disclosure - I'm writing this on a plane to the PCRC meeting)
  • 22% were unwilling to participate.  That's not a sky high number for enrollment in a study near the end of life.  However, it does suggest that some patients may be unwilling to even consider stopping statins.
  • Participants were randomized to continue statins or not.
  • This was a pragmatic trial.   This means that instead of trying to figure out why exactly statins might or might not impact survival under optimal research conditions, the authors were interested in 
  • The study was not blinded.  People knew if they were still getting a statin or not. They didn't get sham pills that were possibly a statin or a placebo.  Their doctors knew they were either still getting a statin or not.  This is important, because it's possible that stopping the statin may have clued the doctor in to stop other medications. Indeed the group that stopped statins also stopped on average almost one additional medication.
  • Quality of life was modestly higher in the group that stopped statins over time.
  • Mean cost savings given the average online drug price were $716 per patient.
  • On the one hand, there was no difference in the primary endpoint of death at 60 days following randomization.  24% of those who stopped statins died within 60 days, and 20% of those who continued statins died within 60 days.  The p-value for this difference was 0.36, and did not reach the threshold our society accepts as reasonable for saying a difference exists, or 0.05.  Theoretically, if we repeated the study 100 times, 36 times we would find no difference between stopping and continuing, and 64 times we would find a difference.  If the p had been .04, we would have said 4 only times we would find no difference and 96 times we would find a difference.  
  • On the other hand, the study did not reach it's non-inferiority endpoint.  What does this double negative mean in plain english?  If we untwist the double negative, does it mean that stopping statins is superior?  Not really.  Not non-inferior doesn't mean superior.  Here's what it means.  It means that the range of possible outcomes given the sample size of the study included the possibility that stopping statins could result in as much as a 10% increase in mortality at 60 days compared to continuing.  At the other end of the range, stopping might decrease survival by 3%, but it's the possibility that stopping might increase mortality that is the focus of the "non inferiority" analysis.
What are we to make of these last two points?  Is this a "mixed message"?  Possibly.  The authors conclude that for those patients whose goals are quality of life, the physician could counsel the patient to stop statins.  For those patients focused on maximizing chance of survival, we can't really say there isn't a slim chance they might prolong life.  

So now I'm going to take a stand that is a more definitive stance than the authors could take in an academic journal:
Stop. The. Statins.
Continuing statins for patients with a life expectancy of less than 1 year is nonsense.  Just stop it.  It's dumb medicine.  Continuing has no demonstrable impact on survival, and stopping leads to a higher quality of life at a reduced cost to society. 

The biggest barrier to stopping isn't that niggling voice in the physician's head saying, "maybe there's a chance the statin is helping."  The biggest barrier is the lack of support, lack of training, and fear of talking with the patient about the reality of their limited prognosis, and the implications of that prognosis for treatment.

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Wednesday, March 25, 2015

BREAKING: cancer therapy prolongs survival 6 months, worth 2-3 billion/year

by: Alex Smith @AlexSmithMD

An article was published yesterday that provides supporting evidence that a treatment* for advanced cancer improves survival by up to 6 months (18 vs 12 months).  This study was conducted in a population of patients with advanced cancer who had a prognosis of less than 2 years.  The first, earlier study of this treatment* to examine survival demonstrated a survival benefit of about 3 months in advanced lung cancer.

This is big news folks. 

A major question for our society - can we afford this treatment*? 

By way of comparison, Avastin (bevacizumab) increases survival by about 4 months, about the same as the average survival benefit of this treatment*. Avastin had sales of about $2-3 billion per year at the time it was released.  The average cost for Avastin per patient is between $40,000-100,000 per course of treatment.

How much as a society are we willing to invest in a treatment* that improves survival by 4 months in advanced cancer?

*Treatment is early outpatient palliative care.  Costs of outpatient palliative care are generally offset by cost savings from reduced resource use (hospitalizations, emergency department visits).  Costs are likely minimal to negative.  If this was a drug it would be worth billions, and the US would pay for it.
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Tuesday, March 17, 2015

The art of being a hospice genie: experience, presence, and caring

Photo by Joan Teno
Blog by: Amy Getter, a hospice nurse who blogs at

I had been drained with frustration and immersed in the medical disaster we call home care this past week. Perhaps if I had never known the simplicity of visiting hospice nurses, before the medical giants of organizations and corporations had grabbed such a firm hold to significantly alter just a home visit by a nurse to a dying person, I would not have recognized what was startling.

Okay, I have agreed that it is imperative to standardize what we do, what we say, ensuring that our care is cloaked in the vestiges of the acceptable and researched and validated hospice and palliative care approach.

Last week we learned of a new shortage and increased cost of a medication (atropine) used for years for an end of life symptom: to reduce the gurgling sounds present at the last hours of many dying people, what hospice nurses term “respiratory congestion” and what the untrained average person still might call “the death rattle”. Very simply; it is no longer profitable to produce this very inexpensive medication. And some studies would report how ineffectual it is, though most of us who have initiated atropine drops early on, before respiratory congestion becomes something heard down the hall of the room where someone lies inert in their bed, breathing in gasping breaths- we would share with you in fact, it did help. It’s one of the latest terms I frequently read in research reports, with a sneering mention of the “anecdotal evidence” (just you uninformed hospice staff who work at the bedside and observe the results who might believe something)… not according to the lengthy research data gathered and scientifically reported that might question or even invalidate what you do.

This past week also brought a stunning fact to light; a medication that I used well over a decade ago as a daily injection to treat my patient’s bowel obstruction, (and long since beyond the trial period of patent and trademark regulations requiring exorbitant amounts of reimbursement to the pharmaceutical research and development team); that same medicine, for that same treatment, is suddenly difficult to obtain, but not the once-a-month-injection at the cost of nearly $4,000 dollars. (Yes, I am talking about Octreotide.) Research and Development, latest studies that defunct effective treatments, insurance reimbursement issues clog my hospice pores!

Enough ranting; back to my visit.

I called to say I was stopping by. The husband, a little harried sounding on the phone, said “That would be great”. As I entered, I could hear his dying wife mumbling in the bedroom, she had been incoherent and incontinent overnight, becoming increasingly restless and even a little belligerent, and he seemed at a loss how to begin to disturb her. I spoke quietly to her, explaining what we wanted to do in order to get her cleaned up; I could see just a flicker of understanding with a mumbled okay. We turned and washed the dying woman’s body, adjusting pillows and limbs and soothing her with quiet words, and just then her sister came back home. While I finished my careful check of signs that indicated she had only hours or perhaps a couple of days left in her struggle to leave this life, I heard her family in the hall whispering, “How did she know?” When I came out of the room, the sister said simply, “I have to hug you. You are like a genie, showing up just when we need you -Our own hospice genie- I believe it is the way things happen in life, and I’m just so thankful”.

The startling truth: I do this work to share these moments with family who are struggling to keep their loved one in their own home and provide a peaceful, loving environment. I did no great thing, I arrived and showed compassion, I knew the medicine that would alleviate some of her discomfort, I knew how to help turn someone in a bed when they cannot help themselves, I knew how to drizzle a little medicine into lips that could no longer purse together around a straw, I knew how to touch a hand and whisper comfort to a person who was not my loved one, but another struggling human being who, like us all, is having to come to terms with losing all her human abilities and becoming totally dependent on others at the end of her life.

Please, please, please… as we yearn to do more, and do better, for the suffering that we call dying…let us not lose the simple truth of caring for people as their life is ebbing. Buried beneath the latest research and experimental treatments lies a mere act of humanity: to be present and to care. As Mother Theresa said, “Not all of us can do great things, but we can do small things with great love”.
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Saturday, March 14, 2015

Ageism in Healthcare Hurts Our Patients

by: Stephanie E. Rogers, MD @SERogersMD

For the first time in human history, adults older than age 65 will outnumber children younger than age 5.(1) In medical school, we receive training in treating young patients during the pediatrics lecture series and later in an extended clinical rotation, yet the training we receive for treating geriatric patients is significantly lacking. It was not until I entered my fellowship in geriatrics - after completing four years of medical school and three years of internal medicine residency - that I received any formal training in the care for older adults.

Pediatric units are common at most hospitals, where multidisciplinary teams including nurses and pharmacists are specialized in treating children and most children have access to an outpatient pediatrician. In contrast, few health systems have adopted the specialized models that exist to provide cost-effective care for older adults in hospitals, clinics, and at home. Furthermore, plenty of research literature exists regarding the care and treatment of children, while it is commonplace to exclude older adults from clinical trials due to age or multiple comorbidities, despite the fact that they are likely to benefit from the study interventions.

The presence of ageism is a glaring deficiency in our current health care system. Ageism is the “systematic stereotyping of and discrimination against people because they are old, in the way that racism and sexism discriminate against skin color and gender.”(2)  In our study published online today in the Journal of General Internal Medicine,(3) we report that this systematic discrimination by doctors and hospitals leads to earlier functional decline in patients. Using the Health and Retirement Study, a nationally-represented sample of 6,017 adults older than age 50, we found that 1 in 5 older adults reported experiencing discrimination in the healthcare setting. Those who reported the most frequent discrimination were more likely to have developed new or worsened disability over the next 4 years. The most common reason reported for this discrimination was age.

Promoting health and well being for our diverse population cannot be achieved without paying attention to the precise needs of our aging nation. As a healthcare system, we have neglected our future selves long enough. Our older patients deserve our devotion, in particular because of their age. Their long life experience and contribution to society should allow them the same attention and quality of care we offer to our children.

  1. UN Department of Economic and Social Affairs Population Division: World Population Prospects, 2012 Revision (accessed March 3, 2015). 
  2. Butler, RN. Why survive? Being old in America. Johns Hopkins University Press, Baltimore, MD; 1975. 
  3. Rogers, SE. et al. (2015). Discrimination in Healthcare Settings is Associated with Disability in Older Adults: Health and Retirement Study, 2008-2012, Journal of General Internal Medicine. DOI: 10.1007/s11606-015-3233-6.
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Friday, March 13, 2015

Searching for Successful Aging

by: Jeffrey M. Levine MD, AGSF (,

Successful aging is hard to define. The concept took root in 1987 when Rowe and Kahn published an article distinguishing “successful aging” from “usual aging.” Since then, scholars have been grappling for a definition but with little consensus. As discussed in a recent special issue of The Gerontologist (V 55 #1, February 2015) there are numerous directions from which the successful aging concept can be approached (see also this previous GeriPal post).

As a geriatrician who spent much of my career in nursing homes with the sickest sick I grapple with the concept of successful aging. Early on I noticed that two persons of the same advanced age can have vastly different states of health, functional status, family structure, economic status, and social standing. Lifestyle, personal choices, attitude, and coping mechanisms often had an influence on how people lived in their advanced years.

The Gerontologist is the flagship journal of the Gerontological Society of America, and I have been exploring successful aging through visual expression on its covers. The first cover I published was in 1996, not long after completing my geriatric fellowship. It featured my teacher, Dr. Manuel Rodstein, who was well into his 80’s and Director of Research at the Jewish Home, affiliated with Mount Sinai Medical Center. A gentle scholar and towering intellect, he published hundreds of papers on geriatric cardiology and taught me Latin phrases that he learned in medical school.

Back then to do photography you needed heavy equipment and a darkroom full of chemicals – a far cry from the pocket devices that proliferate today. My first Manhattan apartment was a small brownstone walk-up that I converted into a studio and darkroom which had barely enough space to sleep. As photographic technology evolved and my career progressed I continued to explore successful aging on the cover of The Gerontologist and my images have appeared on over 50 covers. Each one has its own story.

When the editors of The Gerontologist asked me to provide a cover for their special issue on Successful Aging I knew who I would photograph. I contacted Tao Porchon-Lynch who, in her 90’s, is in the Guinness Book of World Records as the oldest living Yoga instructor. She is also a dancer, and I met her at the Fred Astaire dance studio in Westchester with her 26 year old dance partner, Vard Margaryan. I spent an hour photographing her as she glided across the floor, and her personality was as sparkling as her dress.

As a geriatrician I am constantly aware of the common human destiny of growing old and the need for a view of aging that inspires and teaches. I use my images to demonstrate how human beings can thrive as they journey into old age while probing their spirituality and showing diversity and strength. My goal is to open a door to the fullness of the life experience and come into closer creative contact with my own aging. Hopefully I too will be successful.

Watch a video that features Dr. Levine’s Gerontologist cover photos through 2011 (YouTube link here)


Dr. Levine’s photographic exhibit entitled An International Celebration of Aging will be on Exhibit at the University of Michigan as part of their Gifts of Art program from June 15th to August 23rd. Dr. Levine’s blog is at Follow Dr. Levine’s art on Instagram @jlevinemd.
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Wednesday, March 11, 2015

Does Octreotide Work for Malignant Bowel Obstruction?

by: Colin Scibetta, MD (@colinscibetta)

Malignant bowel obstructions are a known complication of advanced cancer, especially in ovarian and gastrointestinal, and a frequent reason for admission to the hospital. Somatostatin analogues (such as octreotide) reduce gastric secretions and intestinal activity and there is some evidence for their use in improving symptoms of malignant bowel obstructions.

A randomized control trial published last year out of Australia[1] sought to understand the benefit, if any, of adding IV octreotide to a standardized regimen of steroids and histamine blockers.

A little about the Study

This was a double blind, placebo controlled randomized trial of patients with nausea and vomiting from a confirmed malignant bowel obstruction. Patients were enrolled at multiple sites by providers from different specialties (ER, general medicine, oncology and palliative care) after the diagnosis was confirmed and assuming they did not meet criteria for immediate surgery or chemotherapy. Patients were randomized into Standard Therapy (placebo + IV dexamethasone, Ranitidine, IV hydration) or Octreotide groups (standard therapy + octreotide 600mcg infused over 24 hours). They included patients older than 18 years with advanced cancer, presenting with vomiting from malignant bowel obstruction between August 2008 and May 2012.

They excluded patients who had immediate indication for surgery or cancer directed therapy after consultation with the patient’s oncologist. Additional exclusion criteria included severe renal impairment, cirrhosis, existing venting G or J tube, a previous adverse reaction to any of the study drugs, and an Australian-modified Karnofsky performance score of less than 30.

The authors looked at a lot of different outcomes. The primary outcome was the number of days free of vomiting as reported by patients at 72 hours. They also looked at a host of secondary outcomes, including a patient-rated Global Impression of Change (GIC) scale, number of patient-reported episodes of vomiting per day, survival, nausea, brief pain inventory, functional status, PRN medication use (as dictated by the study protocol), and treatment failure. Treatment failure was defined as persistent vomiting, insertion of NG or venting G tube, or surgery.

The PRN medication protocol included hyoscine butylbromide (an anti-spasmodic medication) for colicky pain, opioids for non-colicky pain, and haloperidol or metoclopramide for nausea and vomiting.

Did Octreotide work for malignant bowel obstruction, as measured by the primary outcome?

No. There was no difference in mean number of days free of vomiting between the octreotide (1.87 days) and Standard Therapy group (1.69), with p-value of 0.47. In fact, patients in both groups demonstrated a significant drop in number of episodes of vomiting between day 0 and day 1.

There were also no differences detected in patients reported Global Impression of Change scores, presence or intensity of nausea, pain scores, or survival. Patients in the octreotide group were more likely to be administered hyoscine butylbromide for colicky abdominal pain (p=0.004). The study was not powered to detect differences in secondary outcomes.

Of note, the authors comment in the results section of the paper that after an adjusted multivariable regression analysis of secondary outcomes, they found a statistically significant reduction in the number of episodes of vomiting in patients treated with octreotide (RR=0.40, p=0.019). Interestingly, this was not mentioned in the discussion section and did not appear to influence the authors conclusions.

Key things to consider when interpreting this study

It is worth mentioning that the dose of octreotide used in this study was higher than that in previous studies (600 mcg/24 hours), and the authors do not address this. In addition, the standard regimen of IV ranitidine and dexamethasone used in both the control and treatment arms of the study is far from universal, and in fact varies widely across clinical practices. Importantly, patients in both arms of this trial reported marked improvements in symptoms and overall GIC score over the course of 3 days -- in particular between days 0 and 1. This change was statistically significant, and highlights that patients in both arms tended to improve, regardless of whether they received octreotide. Whether this reflects the natural history of malignant bowel obstructions in this population or the efficacy of the "standardized" medical therapies given to both groups is not clear.

Additionally, this study does not tell us about the potential benefit of octreotide therapy beyond a 72 hour window. Questions about the benefit of longer term dosing of octreotide in patients with recurrent or non-resolving malignant bowel obstructions are not addressed by this study.

What’s the take home point?

Ultimately, the results of this well designed and rigorously implemented randomized control trial do NOT support the use of IV octreotide in the acute management of malignant bowel obstruction. Not only did octreotide fail to demonstrate a reduction in vomiting over a 72 hour period (primary outcome), there was no meaningful difference in any of the secondary outcomes – such as pain, episodes of vomiting, or nausea.

The lack of demonstrated benefit is important because octreotide is a costly medication that requires either continuous, frequent subcutaneous or IV dosing, or long-acting depot formulations that may take several weeks to reach therapeutic levels. Furthermore, the observed increased use of anti-spasmodics in the treatment group raises the possibility that octreotide may even contribute to abdominal discomfort in these patients.

[1] Currow DC, Quinn S, Agar M, et al. Double-blind, placebo-controlled, randomized trial of octreotide in malignant bowel obstruction. Journal of Pain and Symptom Management. 2014.09.013. [Epub ahead of print]
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Wednesday, March 4, 2015

How to Succeed at the #ThickenedLiquidChallenge

by: Kelley Babcock, MS, CCC-SLP, BCS-S, @kelleybabcock

The #thickenedliquidchallenge has certainly raised awareness of how difficult it can be for patients to enjoy honey-thickened liquids. Many physicians and speech pathologists have never tried the liquids they so frequently prescribe to patients, so this increased awareness may help initiate important conversations with patients, clinicians and family members about quality of life and patientʼs rights to decline recommended interventions.

Unfortunately, this challenge has been named the “thickened liquid challenge,” which could be confusing for patients who find these videos on YouTube. A more accurate name would be the “honey-thick liquid challenge.” While I almost never recommend honey-thickened liquids (see my blog here for rationale), I do recommend nectar-thickened liquids with appropriate patients. I do this judiciously and using the following decision-making process:
  1. Does the patient show consistent aspiration on an instrumental evaluation of swallowing?
  2. Is there a significant reduction in aspiration with trials of thickened liquids during the instrumental evaluation?
  3. Is the patient at increased risk of pulmonary infection? (see blog post here on factors other than aspiration that place patient at risk for pneumonia) 
  4. Have I attempted compensatory modifications that have been unsuccessful in eliminating aspiration (e.g.: postural techniques, improving sensory awareness, and modifying the volume & speed of food presentation)?
From this algorithm, I can present the patient with an objective diet recommendation as well as the rationale behind the recommendation. The patient then has the opportunity to ask questions and communicate their wishes regarding the diet, and finally a diet is ordered based on this shared decision-making interaction.

Diet modification should be the last compensatory strategy utilized in management of dysphagia (Logemann, 1998), but it is a reasonable and appropriate recommendation for many patient populations. The participants in the #thickenedliquidchallenge make the recommendation of a thickened liquid diet look impossible to complete, but as I watched the videos, I kept thinking to myself, “they are doing this all wrong!” I completed a 12 hour challenge and drank over 80 ounces of fluid without getting sick, overly thirsty, overly full or feeling dry. I also didnʼt drink anything that could be called “gross,” “goopy,” or “sludge.” Below are a few recommendations for SLPs, physicians and patients on how to succeed on a thickened liquid diet.

1. Change your thickener. The most common thickener I saw used in the #thickenedliquidchallenge was the super cheap cornstarch-based thickener that is found at the local pharmacy. Though this thickener will certainly do the job, it can also turn your beverage into sludge. Because cornstarch continues to thicken over time, what was initially created to be a nectar-thickened liquid may become pudding-thick after sitting around for a while. Cornstarch-based thickeners are also more difficult to use with carbonated beverages and can thicken way too much with hot liquids.

Xanthum gum-based thickeners are a newer breed of thickener which maintain a more consistent viscosity (thickness) across time, temperature and base fluid (Mills, 2008). They have been found to have a more “slick” feeling in the mouth which is reportedly more pleasant for consumption. Unfortunately xanthum gum-based thickeners are more expensive and many facilities refuse to transition to them.

Many of my patients prefer pre-mixed thickened fluids. They maintain their viscosity over time and are a consistent, convenient option.

Below are two 4 ounce glasses of nectar-thickened liquid after sitting for 45 minutes. The image on the left is the xanthum gum-based thickened liquid while the goop on the right is the cornstarch-based thickener.

2. Prepare thick liquids correctly. This may seem silly, but make sure that the amount of thickener and liquid is correctly measured when mixing up thickened liquids. Most thickeners come with measuring spoons right inside or are in individual packages for single use. If your thickener does not have a measuring spoon, grab one out of the kitchen drawer & leave it in the container for easy measuring. I recommend patients use shaker bottles that have ounces printed on the side so they can quickly identify the correct amount of liquid to prepare. These bottles are sold in grocery stores, and if the patient wants to be really fancy, they can pick up a bottle designed for protein shakes - these are quite large & have a mixer component within so consistent mixing is easy. If the liquid does not look to be the correct thickness, check the directions to ensure you have allowed the thickener enough time to work - donʼt just keep adding thickener.

3. Go naturally thick. Many liquids are naturally nectar-thick. Nectar-thick liquids should have a viscosity, or thickness level, of 51-350cP (centipoise). I recommend fruit  nectars (peach, apricot), Kefir, Kroger brand yogurt smoothies, thick tomato juice & soup and buttermilk. Many of the oral nutritional supplements found in hospitals are also nectar-thick. Resource Health Shake (150cP), Resource 2.0 (70cP), MightyShake Regular No Sugar Added (51-350cP), ProMod Liquid Protein (51-350cP), Carnation Instant Breakfast Lactose-Free Very High Calorie (95cP) are all nectar-thick without adding any thickener (Olsen & Kavlich, 2011).

4. Tips for improving mouth moisture. One of the major complaints from the #thickenedliquidchallenge participants was that their mouths felt very dry. I recommend ice chips and small spoonfuls of water after good oral care for patients who are on thickened liquid diets. Our lungs can tolerate small amounts of aspiration of water (Coyle, 2011). What they do not tolerate well are large amounts of aspiration of soda, coffee and juice. There are a few lines of oral moisture products - mouth sprays, mouthwash, gum, toothpastes - that can help the mouth feel less dry. Good oral care also helps keep the mouth feeling moist and helps protect against pneumonia.

Thickened liquids themselves have not been found to “dehydrate” patients on their own. In 2007, Sharpe and colleagues found that both cornstarch- & gum-based thickeners released 95+% of their fluid content in both rat and human trials. What the #thickenedliquidchallenge sought to highlight was reduced oral intake of fluids when patients did not prefer the liquids they were prescribed. While this certainly can occur, we as clinicians must ensure that patients understand the risk they are taking when refusing a prescribed diet. The patient in the image below did not believe that he had any difficulty swallowing. He had been hospitalized three times in one year for pneumonia - once with sepsis, but never coughed or had any overt signs of aspiration during mealtime. On modified barium swallow study, he was found to have profound dysphagia with thin liquids, but was able to significantly reduce the quantity of aspiration when his liquids were thickened to nectar-thick. He did great with a nectar-thickened liquid diet and has not had pneumonia since. 

Remember that even though thicker liquids may seem to be less pleasant to you, aspirating and coughing throughout a meal is also not pleasant. Each patient deserves our thoughtful consideration of their present situation, prognosis, and wishes when determining their personal diet recommendations. Just as no clinician would recommend that every patient with dysphagia be placed on a thickened liquid diet, no clinician should say that patients should never be placed on one. Many more studies of the long-term outcomes of the use and non-use of thickened liquids in dysphagia are needed, and I invite the geriatric community to join us in the speech pathology world to engage in these investigations. We speech-language pathologists need to engage with patients, families, and other team members to implement evidence-based practice, support ethical decision-making, and provide good guidance in the implementation of thickened liquids so that any negative impact on quality of life can be minimized or avoided and any expected benefits fully realized (Balandin, Hemsley, Hanley, & Sheppard, 2009).

  • Balandin, S., Hemsley, B., Hanley, L., Sheppard, J.J. (2009, September). Understanding mealtime changes for adults with cerebral palsy and the implications for support services. J Intellect Dev Disabil. 34(3):197-206. 
  • Coyle, J. (2011, December). Water, Water Everywhere, But Why? Argument Against Free Water Protocols. SIG 13 Perspectives on Swallowing and Swallowing Disorders (Dysphagia). Vol. 20, 109-115. 
  • Logemann, J. A. (1998). Evaluation and Treatment of Swallowing Disorders, (2nd Ed.), Austin, TX: Pro-ed Publishers. 
  • Macqueen, C. E., Taubert, S., Cotter, D., Stevens, S., & Frost, G. S. (2003). Which commercial thickening agent do patients prefer? Dysphagia, 18, 46–52. 
  • Mills, R. H. (2008, October 14). Dysphagia Management: Using Thickened Liquids. The ASHA Leader. 
  • Olson, E & Kavlich, S. (2011, November). Viscosity Levels for Oral & Enteral Feedings. Retrieved from feedings 
  • Pelletier, C. A. (1997). A comparison of consistency and taste of five commercial thickeners. Dysphagia, 12, 74–78. 
  • Sharpe, K., Ward, L. Cichero, J., Sopade, P., & Halley, P. (2007). Thickened fluids and water absorption in rats and humans. Dysphagia, 22, 193-203.
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Wednesday, February 25, 2015

Using video to jumpstart The Conversation: a book review

Reviewed: The Conversation, by Angelo Volandes

Reviewed by: Alex Smith

Using video to help patients with serious illness make decisions about future care seems like a “no brainer.” Think back to your early training. Remember being at the code for that patient with advanced cancer, wondering why he wasn’t DNR? If he could only have “seen” what it was like to be coded, to be in the ICU, to live on machines. The allure of video is obvious. But as with any thing that seems too good to be true, the reality of using videos to jumpstart goals of care conversations is more laden with potential pitfalls than is apparent on the surface.

Thankfully, we have Angelo Volandes. In his book The Conversation, Angelo uses stories of patients he has cared for to build the case for video. He does this slowly, deliberately. He exposes the limitations of language through his own stories of caring for patients, where he wishes the conversation had gone differently. He does this with humility. He exposes his own mistakes with a touch of self-deprecation, as in this conversation with Helen, a Harvard poetry professor hospitalized with an invariably fatal form of brain cancer, who asks Angelo:
“What happens at the end?”

“In the end the intracranial pressure becomes untenable, causing the blood pressure to elevate drastically, the lungs to stop breathing, and the heart to slow until it stops. It’s called Cushing’s Triad.”

A bead of sweat ran down my forehead. Had I really just said “Cushing’s triad?” I was hiding behind medical jargon. What I really needed to say to Helen was that no matter what anyone might do, she would die very soon.
Angelo later takes Helen on a tour of the ICU. In the midst of the tour Angelo is called into a code blue for an ICU patient. The code is witnessed by Helen and her husband.  Disturbed by what she sees, Helen decide to shift to focus on comfort care. Helen is discharged with hospice and dies at home, surrounded by family and her students.

This is the ah-ha moment. To reach more patients, Angelo unites his passion for improving goals of care conversations with his boyhood dream of becoming a film-maker. He starts to use video in the care of patients with serious illness to dramatic effect.  He creates video examples of what it would be like to chose life prolonging care, limited medical care, or comfort care.  Angelo starts to study the use of video.  After viewing the video, patients are more informed, would recommend use of the video to others, and are more likely to chose a comfort oriented approach when compared to a scripted conversation.

Now, I happen to know Angelo well. We were in fellowship at the same time - he in bioethics, me in palliative care – and we did our research training together. I know that the story is more complicated and the journey toward video rockier than depicted in the book.

I remember a research class where Angelo showed a video of a woman with Advanced Dementia. In the video she is lovingly cared for by her family. The voice-over describes the clinical course of advanced dementia. Our course instructor for this session, a Geriatrician, asked the class, “did anyone notice anything unusual about the woman in the video?” We didn’t. “Her mouth was open and her tongue was hanging out of her mouth. Many people with advanced dementia don’t have that appearance. Might the image of the tongue lolling out of the open mouth sway the viewing audience toward a decision that living in such a state is undignified?” We acknowledged that it might.

Angelo has put a tremendous amount of thought and work into addressing concerns such as these. The primary concern with the use of video is that it the video will be biased biased toward a comfort-oriented approach.  In response to these concerns, Angelo has removed testimonials from his videos, and decided to depict CPR on a dummy rather than on a live (or dying) person.

We need this sort of hard work and attention, because Angelo is right: video is a remarkably powerful tool. As one of his patients says, “if a picture is worth a thousand words, a video is worth hundreds of thousands.” Angelo likens his videos to the Kahn academy’s inversion of the schoolroom – empowering students with knowledge and leaving class time for discussions with teachers. And similarly, patients can be “activated” by videos to engage their physicians in thoughtful conversations about goals of care. He is careful to note that videos should supplement, not replace, conversations with healthcare providers.

This is a very important book.  It presents a remarkably compelling case for the use of video in advance care planning.  To be sure, the book is not without flaws. At times Angelo seems to want to teach a lay audience the intricacies of medicine, when a simpler explanation will do. The citations,  including journal names within the text, will likely be distracting for a lay audience. These are the challenges of someone who is used to writing meticulously cited journal articles learning to write a book for public consumption.

Overall however, we should be grateful for Angelo’s hard work in this area. Video, used correctly, does have the power to “revolutionize” end-of-life care, as the subtitle of the book suggests. It needs to be done thoughtfully, and with great care, an appropriately high bar for someone crafting a goals of care video for thousands, perhaps tens of thousands, perhaps millions of people.

Angelo Volandes

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