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by Amy Clarkson

As a parent, one of the incredible mysteries has been to watch each of my children come into this world with a predetermined personality. Our parenting style seems to have little effect on these inborn traits. We know that our ultimate personality is a grand mix of what we come into the world with, our genes, and the life experiences we have. One such nuanced trait that is both nature and nurture based is the optimism/pessimism scale.

You can surely place yourself on this scale as you read this. Maybe you’ve been called an idealist, or negative or someone who always looks on the bright side. It’s important to realize that both optimism and pessimism have pluses and minuses, especially with end of life issues.

These traits in general are things that help us manage our expectations of the future. An optimist will assume a positive result, while a pessimist expects the negative.

The way we tint our vision of events, whether rose or blue tinted, is also a way to manage our emotions related to these events. Optimism acts to buffer anxiety and can raise us up and out of a gloomy reality. Pessimism also protects our emotions. By expecting the worst, we insulate ourselves from disappointment and create a possibility for a pleasant surprise if things turn out better.

One way to consider the optimism/pessimism concept is to consider it as a fluid scale. We slide toward one side or the other depending on if we are thinking about work, relationships, world events, etc. Alternatively, we may consider ourselves realists, always right in the middle, finding a good mix of hoping for the best, while still preparing for a worst-case scenario.

Knowing that these traits are inherently protective, it’s no surprise that with end of life issues I often encounter the extremes. Moreover, what I notice is like most things in life, it’s at the far extremes that these traits move from being healthy to unhealthy.

I’m all for thinking positive, but when Mrs. W was confronted with her new cancer diagnosis and refused to start treatment because it was “surely a mistake, I most definitely do not have cancer” her extreme optimism is now be labeled denial. While denial will certainly protect ones emotional well-being, it does little to protect the physical reality of disease.

Mrs. W’s case is extreme, but there are more subtle ways that extreme optimism causes harm. Unfortunately, it is quite common for people on hospice to put off important conversations, financial decisions, and delay dealing with things they should because their optimism clouds the reality of how serious their condition is or how much little time they have left.

On the other end is extreme pessimism. Mr. H refused starting a therapy that would add both years and quality to his life because “What’s the point! Now that I have cancer, I’m done trying to live!” We sometimes label extreme forms of pessimism as depression. When someone is paralyzed with inaction because of their negative attitude, it may protect them from being disappointed but does nothing to improve reality.

It’s nearly impossible to move someone from the extremes at the end of life. Understanding that a lifetime of personality is at play may at least garnish some compassion.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Photo credit: "Teeter-Totter" by Laura Bernhardt via Flickr/Creative Commons

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by Amy Clarkson

It’s difficult for adults to talk to one another about death. The topic makes us uncomfortable. Despite this fact, most of us will muster up the courage and have these hard conversations when the need arises. There is something, however, far more difficult than talking to our peers about death and that is talking to children about death.

Parents will have memories of questions kids have posed about death when a pet has died or bird is found deceased outdoors. These awkward moments force us as adults to simplify a complex concept on the fly, and usually unprepared, at best we stumble our way through.

What do we do when it’s not a pet; when the impending death of a parent or grandparent looms?

That answer is as complex as the topic of death itself. There are some basic facts however, that help guide us. One, we know that avoiding the topic of death is harmful. Kids are very observant, and usually have already encountered death on T.V. or have seen dead insects. Though it may feel like we are protecting children by not talking about it, research shows it creates much more problems for the child.

It is also not a good idea to force information that may be too complex on a child. The best approach is a balance between avoidance and confrontation. The goal is to be honest, sensitive, and approachable.

Another mistake adults often make is to use euphemisms when talking to kids. Children are literal, so when an adult says, “Your Grandma is in a better place now,” Kids literally think Grandma might be at Disney World. The phrase “he just went to sleep” is also very scary for a child to hear. Children will become afraid of sleeping themselves, assuming they too might never wake up.

It’s helpful to keep in mind that the developmental stage of the child is important to understanding the concept of death. For instance, kids ages 2-4 don’t grasp the permanence of death. Death is temporary to them, and they will continue to expect the deceased to come back. This age group may react to death with separation anxiety, withdrawing, regression or confusion.

Kids ages 4-7 often have magical thinking. This group will often feel responsible for the death and may connect something completely unrelated to it. For instance, a fight at school gets linked to the reason they think their dad is dying. This group may appear unaffected and unemotional after someone dies. Because of the tendency to feel guilty for the death, this age group needs good communication and openness.

Once kids are 7-10 they begin to realize death is not reversible. This age group is very curious about death and may ask insensitive questions. They can view death as a punishment and will often start worrying that others around them may die, or that they themselves will die soon.

People often ask if children should visit someone who is dying. The best advice is to leave the decision up to the child. If they are interested, they should visit with thorough preparation on what they will see when they arrive. They should be given permission to leave at any time. Finally, children should never be forced or made to feel guilty if they don’t want to participate.

Even though death is a difficult topic for adults, if we approach it the right way with kids, the foundation for healing and understanding for a lifetime can be created.


Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Photo Credit: Still from the movie, "Is Anybody There?"

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by Amy Clarkson

In the success driven society that we live in, I’m surprised there is so little out there about a successful dying experience. There are hundreds of books about how to be a successful parent, a successful spouse, a successful employee or employer. There are success how to’s for education, healthcare, businesses, nonprofits and churches.

Likely, this absence of material about successful dying comes from the link of success to achievement. No one feels confident linking death with achievement. However, what about the idea of dying well? Is this something individually or culturally we should strive for?

Dying well sits more comfortably with us, as we can generalize a bit more about what dying well means. Usually it’s when there is an absence of suffering, when the timing coincides with loved ones presence, when symptoms are controlled and the environment is peaceful; things that at first glance seem out of the control of the person who is dying.

While we may hesitate to discuss what dying well means, historically this was not so. In the 1400’s at the behest of the Roman Catholic Church a booklet was published called “Ars Moriendi” (The Art of Dying) and was the quintessential book on preparing to die, and dying well. It was widely circulated, with over 100 editions and translations into most European languages.

The book spiritualized dying, describing five temptations people dying face. Those temptations were lack of faith, despair, impatience, vanity and greed. The way to die well, then, was to fight these temptations with their opposites. Dying well meant having faith, hope, patience, humility and generosity.

In the 1400’s the availability of medications for symptom management was non-existent. This booklet served to place reason for many of the experiences people witnessed in the death of a loved one. Without an understanding of terminal delirium and restlessness, it was easier to claim impatience as the cause and pray for patience.

In our modern day, medications and scientific understanding help us recognize and treat the physical aspects to aid in dying well. There is more, however, that may be in our control than we’d like to think.

Suffering, despite what we may believe, is not an easily medicated symptom. Since suffering originates from the mind, from experiences, and specifically beliefs and thoughts about those experiences, the control rests solely on the individual. To die well, without suffering, may incorporate some of the very things this 600-year-old book spoke of.

I have seen despair resolve when the focus of regrets moves towards the hope of resolution. I have seen vanity melt away with the courage to humbly ask for forgiveness. I have seen the suffering that stems from the greed and self- focus of ‘why me?’ disappear with a shift to gratitude for the life one has lived.

What does it mean to you to die well? It’s probably too uncomfortable to equate dying well with successful dying, but let’s at least be aware that some of the suffering we all want to avoid at the end can be dealt with while we are living.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

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by Amy Clarkson

When we turn on the news or listen to the radio to hear what the meteorologist is predicting the weather will be, we don’t usually call this ‘the day’s weather prognosis’. We use the term forecast, and yet a forecast is essentially the same concept of what a prognosis is.

Predicting the weather and predicting the outcome of a life limiting disease may carry the same foundation, but they differ vastly on their accuracy. Weather forecasting has an overall accuracy for temperature determination (give or take a few degrees) of 85%. A medical prognosis, however, regarding how long someone has to live (give or take a few days or weeks) is usually only accurate 20% of the time, and actually 65% of the time doctors overestimate prognosis by a factor of 3-5.

Yet so often patients who have a terminal disease leave the doctor having latched onto a prognosis as if it’s as guaranteed as an expiration date on grocery goods.

Many factors go into misinterpretations of prognosis. I’ve mentioned overestimation, but research also shows that the longer a doctor has taken care of a patient or the more they know that patient, the more they overestimate. Besides overestimation, another challenge is how doctors even approach prognosis. Often doctors will use something called the median survival rate when discussing prognosis. Patients get this confused with average. Median, however, is just the middle number of a range. If a doctor says, the median survival is 6 months, that means half of the people with that disease die before 6 months. What median doesn’t tell us is, of those people who died before 6 months, did most of them die in 1 month or 5 months? That’s a big difference!

One thing doctors don’t do well is to discuss the worst-case scenario along with the best-case scenario. They assume it’s too depressing to talk about bad outcomes with the patient. While sometimes during prognosis talks patients are shocked, retreat into their brains, and can’t listen to the prognosis, often times patients are waiting for doctors to initiate these tough discussions. One suggestion that can help with both these problems is to have the doctor actually write out the worst-case prognosis, the best-case prognosis and the most likely prognosis.

What can be very challenging is that many prognoses have a very wide range of possibilities. Some cancers carry the possibility of dying in 6 months or living out the rest of your life essentially cured. It’s the same as if a meteorologist announced that for tomorrow’s forecast the possibility was for snow, or maybe rain, but also could be hot and sunny. If you were traveling to a location like that, you’d pack for the extremes, wouldn’t you? This is how we need to treat prognosis as well. Prepare for the extremes.

A good prognostic conversation should do this; explore the extremes so that you can plan. The next time you hear a prognosis think of it as a forecast, but one with only 20% accuracy. Also, be sure to ask for the worst-case and best-case extremes, it will help you prepare for the journey.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

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by Amy Clarkson

We have a serious problem on our hands. It’s been around for decades, but it seems to be getting worse. Our problem? Death avoidance.

As a society, we keep getting farther away from the reality that death is inevitable. Death has gone from being something visible and an accepted part of life, to something invisible and far too easy to deny.

In the 1800s just as photography was coming into existence it was common to have a post mortem photograph taken just after someone died. These photographs were displayed in the home as a constant reminder of the loss. Death was something that happened in the home. Generations lived near each other, so it was common to have grandchildren present during the last days, as well as in the home around the deceased’s body during the day or two of the vigil and wake before burial.

Even the funeral processions were more visible. As loved ones walked behind a horse drawn carriage carrying the coffin in a slow mournful way, there was no escaping the knowledge of who had died, and all could see the family mourn openly.

Mourning in the 19th century also lent itself to something more visible. Loved ones dressed in black for a period of months to years. This custom allowed others to be reminded of death’s presence on a daily basis.

In our modern sophistication, we have drastically altered most of these past traditions. We don’t always live near family, and our elderly often are hidden away in nursing homes for their last months and years. Death occurs not in the home, but in hospitals and long term care facilities. Our distaste of death has seeped into funerals, which now are called a “celebration of life” with embalming practices to attempt to make the deceased look as alive as possible. We aren’t allowed to grieve for long, it’s too uncomfortable to face death. Mourners are subtly pushed to ‘get over’ their grief quickly and friends prefer not talking about it.

The word death itself is greeted as a morbid term. We use phrases such as “he passed away” or “he went to be with Jesus” to make it easier to say. I’ve seen it done in my own field. People don’t want to say ‘hospice’ because of its association with death, and prefer using the term ‘palliative care’ to push the reality of dying farther away. Another subtle trend is to use the phrase end of life, instead of saying someone is near death. The switch from life to death, diminishes our discomfort with death.

Recently I’ve had people say that even ‘end of life’ is too harsh. Should we come up with a new word for that period of life at the end? Perhaps we could call it the blue period. That way we cannot only avoid the word death but the word end as well.

What harm has our denial caused? Increased futile and sometimes painful treatments at the end, increased fear surrounding death and diminished meaning of life to name a few. We must remember that it is the realization of our mortality that gives us a reason to live.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune. It is re-published here with the author's permission under a Creative Commons license.

Photo credit: "The Grim Reaper" by Trish Steel via Wikimedia Commons under Creative Commons Attribution-Share Alike 2.0 Generic license. 

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by Amy Clarkson

Certain things are just universal. All humans need nutrition. All humans need hydration. All humans need air. There really is no argument to these basic needs for existence. Once our physical needs are met, the priority becomes filling our emotional needs. At the heart of our emotional needs is the desire to feel safe and secure. As children, we are taught that a key way to feel safe and secure is through the approval of our parents, and as we age, we become conditioned to seek out approval of others as well.

The degree of power to which we give others approval of us varies widely and is based on things such as personality, upbringing, and life experiences. One thing there is no need to debate, approval of others feels good and is validating.

We know that approval is tied in to safety and security, so you can imagine during the end of life, if a person isn’t feeling safe and secure, they will seek out approval even more. The ways someone seeks approval can be subtle or direct. Some take medications they don’t want in an effort to get the approval of their doctor or family members. Others get out of bed when they don’t feel like it, or eat a few bites of a meal despite having no appetite. I see patients entertain guests when they’d rather be sleeping, still seeking the approval of others.

Other times approval seeking comes with stories from the past as people use the narrative of their lives to gain validation. Amazingly, some even prolong their dying as a means of gaining the approval of family members who don’t want them to die.

Since approval is a universal emotional need, a helpful thing family and friends can give at the end of life is the gift of approval. The easiest way to think about how to give approval is to give permission. Permission removes any guilt associated with seeking approval and fear of disappointing those we love. Give someone the permission to be tired, to not eat, to be worried, to be angry, to refuse treatment, to feel sad, or ultimately to die.

It’s not just the patient that needs permission during end of life situations. Caregivers and family members need permission as well. They too are seeking approval in an insecure and unsafe reality. One of the greatest areas caregivers need permission is in letting go of the caregiving to step back into the role of spouse/child/friend. It is impossible to provide both total physical care as well as emotional care towards the end of life. Society unfortunately gives approval to the more tangible physical care, despite the more important value that comes with emotional care that only family and loved ones can provide. Often it takes a hospice team to grant that permission.

Just like with patients, we can be responsible for granting approval to caregivers and loved ones. By giving them permission to be where they are, whether angry, sad, worried, not wanting to say goodbye or hoping it was all over.

Permission is a simple way to give approval with untold benefits for those around us.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

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If you’ve ever helped as a caregiver to someone in the twilight years of their life, or perhaps you yourself are at this stage, you may have noticed when it was medication time that there were a lot of pills. It is true there are exceptions to this rule, those individuals who only take one or two medications a day. However this is the exception, and there doesn’t seem to be much middle ground. Either you are on pages worth of medication, or hardly any as you begin to enter the last stages of life.

The first question is, how does this happen? A large culprit to this phenomenon stems from the expectations for the doctor/patient encounter. When a patient comes to see a provider with a specific complaint, they expect a remedy. The unspoken words from every patient are “fix me”. While most complaints aren’t easy to alleviate quickly, culture demands instant relief. Thus, handing out a new medication for a complaint certainly feels like the problem has been addressed. This is not much different to what happens when my 3 year old skins his knee. He has been enculturated to believe that with any scrape a Band-Aid is the ultimate solution. As a parent, I can tell that most of his injuries medically don’t need Band-Aids, and yet when I relent I’m amazed at the immediate soothing effect it has because something has been done to “fix” him. Medications at times are like Band-Aids, they may not be essentially needed, but we expect something from them, and so in turn, they pacify us.

The next issue with medications is the tendency that once started they are never stopped. Someone comes into the hospital for knee surgery and complains of indigestion due to anxiety about the surgery, so an antacid is prescribed. The person is discharged with the new medication, and years later are still taking it, despite not medically needing it. When I put a Band-Aid on my 3 year old, it takes some convincing after a day that I can remove it, because he is now healed. How funny it would be if we left Band-Aids on indefinitely, never evaluating if the injury healed. Yet this is often the case for pills, started by other specialists, or for specific reasons in the past, we trust their benefit, like the Band-Aid, without pondering if still needed.

When it comes to end of life, the harm of over prescribing and not eliminating medications is something called ‘pill burden’. Patients fatigued from their disease and having more difficulty swallowing become burdened by the handful of medications we expect them to take. Many pills can be eliminated because of the above scenarios, but even more can be stopped when we evaluate why someone is taking the pill in the first place.

Many medications prescribed are preventative, meant to stave off unwanted future risks. Some of these drug classes are blood thinners, cholesterol lowering agents, blood pressure medications, dementia medications, and all vitamins. These agents are meant to prevent things years in the future, so it makes no sense continuing them on hospice when time is limited.

Pill burden doesn’t just occur at the end of life. It’s okay to be an advocate and sit down with your physician to discuss the necessity of medications prescribed. The key is to ensure the pills you take are working for you, because it can be work to take them in the first place.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Photo Credit: iStockphoto

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Founding Editor:

• Drew Rosielle, MD, FAAHPM (2005-2009)

Editor:

• Christian Sinclair, MD, FAAHPM (2009-2015)

Contributors:

• Amy Clarkson, MD (2009-2012, 2014) 
• Lyle Fettig, MD (2009-2014)
• Lizzy Miles, MA, MSW, LSW (2014-2015)
• Christian Sinclair, MD, FAAHPM (2005-2014)

Writers:

• Dale Lupu, MPH, PhD (2010, 2014)
• Emily Riegel, MD (2013-4)
• Jeanette Ross, MD (2013-4)
• Bruce Scott, MD (2014)
• Allie Shukraft, LCSWA, MSW, MAT (2014)
• Holly Yang, MD, FAAHPM (2010-2012)

Guest Writers:
Past Contributors:

• Brian McMichael, MD (2010-2012)
• Thomas Quinn, APRN (2007-2012)
• Drew Rosielle, MD, FAAHPM (2005-2013)
• Amber Wollesen, MD (2009-2012)

Past Writers:

• John Hennessy (2013)
• Suzana Makowksi, MD, MMM (2010-11, 2013)

Past Guest Writers:

• Renée Berry (2013)
• Rea Ginsberg, LCSW-C (2013)
• Jennifer Linebarger, MD, MPH, FAAP (2013)
• Kristina Newport, MD (2013)
• Earl Quijada, MD (2013)
• Paul Tatum, MD, MSPH (2013)

Past Co-Editors of Arts and Humanities Pallimed Blog 

• Amy Clarkson, MD (2009-2012)
• Amber Wollesen, MD (2009-2012)

Updated January 25, 2015

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A good rule of thumb for end of life issues should be ‘forget what you think you know about normal.’ This is where much of the confusion and misguided expectations comes from in hospice. People try to overlay what they understand about a healthy or diseased body onto a person whose body is shutting down. The problem is they are not the same. Somewhere along the line, a healthy body becomes diseased, and then, usually unrecognized by most, a transition from chronic disease shifts to actual dying. This transition begins weeks and months ahead of an actual death, and yet everyone surrounding the patient, including the medical team, tends to treat the patient with the faulty assumption that the ‘normal’ rules are at play.

I see this especially in regards to the idea of energy and fatigue. In the normal/chronic disease model, we know that exercise is good. In fact, you have probably been told that to combat fatigue, you should exercise. Expending energy actually leads to a boost in energy. We even have phrases tucked away in our subconscious such as “use it, or lose it”, “no pain, no gain”, and “stay strong, live long”. This becomes ingrained; to get better, or live longer, we must simply get up and move. If you were to put this into a math equation, it would be spend two units of energy and get four units back.

It is no wonder then, with this idea of normal in our minds, why we get frustrated when we attempt to apply this formula at the end of life and it fails.

Both patients and families seem confounded when people aren’t getting stronger, despite forcing themselves to get up and move. They are using it, but still losing it. They experience pain, as families push them to stay active, and yet there is no gain. That is because at the end of life, there are new rules at play.

The energy formula when the body has started to shut down is, spend two units of energy and get zero units back. There is no boost at the end of life when you get up and move, instead people find themselves worn out, and exponentially more tired. A trip to the store equals an afternoon of sleeping. An outing to a family function means the next two days will be in bed. Eventually, even eating a meal will require a 3-hour nap to recuperate.

Unlike what we think of as ‘normal’, to eat more protein, or add more calories, has little effect on the formula. It is important to realize that nothing will increase that day’s allotment of energy. With no ability to increase energy, the day becomes a negotiation of the most important way to spend those units. It may be in conversations, or eating, or completing tasks, or outings; the key should be allowing the patient to decide and not imposing our own ideas of importance on them.

Although the body behaves differently at the end of life, recognizing what the new normal is, will lead to less disappointment and frustration, and ultimately to better quality of life.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Photo Credit: alfromelkhorn via Compfight cc

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When I was in college, I had the opportunity to work with Mother Teresa at the Home for the Dying and Destitute in Calcutta, India. The mission of the sisters was simple; love the least of these. Specifically they did this by bringing in the unwanted and abandoned at the end of life, and giving them a bed, meals if they could eat, and a place to die in the company of another.

The home was sparse by anyone’s account; an open room with a slab concrete floor lined with mats placed on the concrete 3 feet apart. The medications available were even sparser, the only real means of eliminating pain being the ability to hold someone’s hand or give a novice massage. Despite the paltry means of the place, the patients’ eyes shown with immense joy. I soon learned that the medicine we dispensed that had this powerful effect was respect.

Respect is admiration earned by abilities, achievements, or qualities. Interestingly, even with great achievements, etc. respect is not guaranteed, but is completely in the hands of the beholder. The same is inversely true; respect can be given to someone who does not deserve it.

This ability of an individual to grant or retract respect makes it all the more powerful. In Calcutta, the act of lifting someone literally from the gutter and bringing them into a shelter with a bed and food was enough to communicate respect for their person hood. How, though, do we do that here? What tangible ways can we grant respect to someone at the end of their life?

There are a plethora of ideas that come to mind; from simple things like making eye contact and listening to being attentive to personal care needs like bathing and shaving. Really though, any action you may offer depends on the concept behind respect. Respect first and foremost understands a person’s needs and prioritizes those.

In fact, the actual effort to understand what that person really needs or wants is in itself an act of respect. For example, for one patient the respectful thing to do may be to sit for an hour and visit, reminiscing on times gone by. For another, however, the respectful thing to do might be to leave, allowing them time to rest.

Respect says “I care about you enough to understand what you need and grant it, despite my own feelings.”

There is no time more difficult to show respect than over actual end of life decisions. One of the most profound ways to respect someone is by finding out how they want to die, and honoring that. If someone voices the desire to be done with medical interventions, even if those interventions can prolong their life, the respectful thing to do is not to talk the person into your views, but at that point to allow a natural death.

Respect then is many things; meeting physical needs, being kind and caring, trying to understand where someone is coming from, and ultimately honoring their decisions. You’d be amazed to find that when we grant this gift, even to the undeserving, it can be more powerful than medication.

Source: Google books Ngram Viewer

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Image credit: Google search

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When I made the decision in college to turn from my pursuit of becoming a psychologist to that of a physician, it was based on my perception that medicine was a field of black and white answers and not the uncomfortable gray of psychology. How wrong I was! I have since learned that medicine is not black and white equations with simple answers, but complex paradoxes with many unknowns. Ironically, I spend time now treating one of the most nebulous realms in all of medicine; pain and suffering.

One difficulty with pain is subjectivity. Unlike a broken bone that we can see on an x-ray, or a number we can read on a machine, pain on the outside cannot be seen or verified by any test. It is strictly the experience of the injured person. We try in medicine to objectify pain, by asking patients to put a number on their experience. But what does a 7 out of 10 rating for pain actually feel like? If a wasp were to sting two random people, each one may rate the pain of that sting differently. One may feel it was 10 out of 10, another just 2 out of 10 in severity. The insult was the same, and yet the perception and experience of the pain differs from person to person.

Thus, the first rule in pain management is not to judge what we think should or should not be painful, but to take a patient by their word, and try to reduce the severity of their experience with the tools we have available.

If the pain has a source, the first treatment should be to fix that source; notice I did not say the first treatment should be to mask the pain with medicine. If the pain is from a broken bone, fix the fracture, if from infection, fix the infection, if from arthritis, reduce the inflammation. It is only when the source of the pain cannot be healed that we turn to masking the pain with pills. The goal with masking pain is crucial. It is not to escape from the reality of the pain, but to return the ability to function to the person who has pain.

Here is the true problem of pain, especially at the end of life; much of what people call “pain” is actually suffering. Pain in the physical sense originates in the body. You can point to where you hurt. Suffering on the other hand is in the mind. It is the mind that questions why this diagnosis, the mind that worries about what happens after death. It is the mind that remembers the past, harbors guilt, longs for forgiveness, and races with fear. It the mind that says, “I hurt” and “this isn’t fair”.

In hospice, we term suffering ‘existential pain’, acknowledging that like physical pain, it is real and should be treated in the same way. If possible, this means tackling the source of the suffering and is why hospice includes a team of social workers, chaplains, nurses, volunteers and physicians, all there to listen and explore and help heal. When time is too short to fix the source, then like other pain, we turn to medicine; however, existential pain requires different medicine than physical pain, which again adds to the complexity.

To experience pain and suffering, or watch someone else endure it is excruciating, which is why I for one, am on a lifelong quest to better understand and treat this complex issue.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Image Credit: Pablo Picasso "Weeping Woman with Handkerchief"

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by Amy Clarkson

(Margaret Edson, author of Wit, will be speaking at the 2016 Palliative Care in Oncology Symposium, so we are sharing this review from our Arts and Humanities site, originally published in 2009. - Ed.)

There are many movies out there with palliative themes, as we can attest to with our top 10 movie post, which garnered much comments. One of my all time favorites, also made number 1 on our top 10 palliative-themed movies list; Wit.

I first saw this movie in medical school. In fact, according to the IMDb, this movie is known for being shown at medical schools as an example of how not to practice medicine. Also, the plot deals with dying, so it's all the more relevant to those of us who care for dying patients.

The plot is this: An English lit professor, known for her high expectations and little compassion in the classroom is diagnosed with ovarian cancer. The movie shows her experiences from diagnosis to death. Her last weeks are spent in the hospital, undergoing rigorous treatment. She is alone, except for the nurses, attending and fellow who treat her. Through her reflections and memories there is a definite parallel between her heartless days teaching and the heartless medical system she is now in.

The movie is based on a play by Margaret Edson and this monologue, play-like background is the inspiration for the screenplay, making it unique. The soundtrack is simple with only 4 pieces listed. My favorite piece is "Speigel im speigel" or 'Mirror in a mirror' by Arvo Part. It is played often in the movie, the simplicity of the cello and piano is also melancholy, leaving the viewer with the feeling of being alone, just as the main character is.

I love this movie not just for it's ability to pierce me with its sad realities of the medical world, but also for it's subtle sub theme about death. All through out the movie we are bombarded with a certain text from a John Donne's Holy Sonnet 10. The main character was a John Donne expert and specifically recalls the punctuation differences pointed out at the end of this poem by her mentor.

The last line of the sonnet entitled "Death be not proud" is "And death shall be no more, Death thou shalt die." The version our main character had found was different "And Death shall be no more; Death thou shalt die!"

Here is the discussion with her mentor on the punctuation differences, talking about the version with the comma: "Nothing but a breath, a comma separates life from life everlasting. Very simple, really. With the original punctuation restored Death is no longer something to act out on a stage with exclamation marks. It is a comma. A pause. In this way, the uncompromising way one learns something from the poem, wouldn't you say? Life, death, soul, God, past present. Not insuperable barriers. Not semi-colons. Just a comma. "

If only the main character's death could have been so simple. Yet of the many ways death is portrayed in films, her portrayal is haunting. No one should have to die like this, without dignity and respect (ignoring her DNR)...alone in a hospital. Yet it is haunting, because of how real this type of death is. It is the antitheses of a palliative care death.

I've included a clip of our main character (Emma Thompson) thinking out loud. It's a lovely introspection of what's she's dealing with. Another clip has been taken down from YouTube, but when originally posted, it is a beautiful moment when our character actually gets her one and only visitor, her old hard-nosed mentor. The simplicity of human connection in the clip, with the Arvo Part soundtrack accompanying, makes me tear up every time.
I'd also suggest reading John Donne's Holy Sonnet 10 "Death be not proud" (This version uses a semi-colon and no exclamation!)

Dr. Amy Clarkson is a hospice and palliative care doctor in Pratt, KS, and former co-editor of the Pallimed: Arts and Humanities Site.

Image Credit: Still Image from Wit

If you are interested in writing reviews for old or new books and films, please check out our Pallimed Opportunities page. - Ed.

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If you’ve ever been admitted to the hospital you might realize what a well-oiled machine it is, and must be to function well. Depending on what diagnosis is at play, whether that is illness or pregnancy, there are a series of things that get set in motion the moment someone enters as a patient. There are protocols, which say: if this, do that. Most of the interventions and medications ordered are what people in health care call standard of care, meaning when x is the diagnosis most people get y.

While this system is in place for the patients’ benefit, to limit errors and reduce subjective variance for treatments, there are some negative things that come with this as well. Many of these automatic triggers for treatment can make a patient feel they are on a moving walkway, taking them on a path with only one direction.

I often meet patients and families at the end of this path, by that time frustrated, exhausted, and confused at what all of the treatments and procedures were for. They shrug their shoulders resigned to the corralling; vocalizing their discontent with where they feel the system has taken them.

The truth is, while the system is manufactured to push a certain direction, there is always a choice. Patients and families forget that they can step off of the moving walk at any time. Remember, that our medical world favors autonomy and gives ultimate consent to the patient.

This does not mean it would be wise to make decisions in flippant, uninformed, or in haphazard ways. However, I absolutely advocate for informed discussions on what other alternatives there are, especially for major interventions.

You should feel empowered to say “I know that most people are treated with surgery with this diagnosis, but can we talk about what would happen if we didn’t do surgery” or “They’ve told us our mom will need rehab, frequent doctor visits, labs drawn, and extensive medication management, could you tell us how things would look if chose not to go down that path?”

Many assume that if there are alternatives, that these would have already been discussed or presented. Let me tell you the medical machine is unfortunately not set up in this way, the most common plan of action is what gets recommended and carried out. It takes a bold voice to stop the current and ask “Is there another option?” Just because no one has mentioned another choice, doesn’t mean there isn’t one. You always have a choice.

The choice for what is being done is most important as we near the end of our lives. This is where the path can lead in nearly opposite directions. With hospice, families have chosen to step off the automatic disease centered path and start journeying on the patient centered path. Nothing in hospice is automatic, but instead individual decisions are made, usually with goals of quality of life as paramount.

The medical system excels at what it is designed to do; fix and treat disease in an automatic way. The problem is we are more than mere disease; which is why we should always have the freedom of choice.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Image credit: Asymmetry Observations via The Funny Blog

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Hooray the AAHPM/HPNA Annual Assembly week is finally here.  Before you stop checking the internet so much because you are at the Annual Assembly, here are a few Pallimed related events this week to check out while you are in Boston.

1) Twitter: Follow the action whether you are at the conference or not.  Two good websites to keep open in your browser are TweetChat (better for those with Twitter Accounts) or What the Hashtag (better for those without a Twitter account...what are you waiting for?)

For those at the conference the official Twitter Hashtag is #HPMAssembly but many may also be using #AAHPM so if you don't see much action on one check the other.

For more on how to best use Twitter check out this previous post.

2) Social Media in Palliative Care Communities: Developing and maintaining your online presence

Friday 7-8:15am

Presentation by: Christian Sinclair, Alexander Smith, Eric Widera
Guest Panel:

• Amy Clarkson, MD, Kansas City Hospice and Palliative Care, Kansas City, MO (Pallimed)
• Suzana Makowski, MD, MMM, FACP, UMass Memorial Medical Center
• Drew Rosielle, MD, Medical College of Wisconsin, Milwaukee, WI (Pallimed)
• Christian Sinclair, MD, FAAHPM, Kansas City Hospice and Palliative Care, Kansas City, MO (Pallimed)
• Alexander Smith, UC San Francisco (GeriPal)
• Eric Widera, UC San Francisco (GeriPal)
• Amber Wollesen, MD, Saint Luke's Hospital, Kansas City, MO (Pallimed)

3) Party!:  Friday night March 5th at 8pm will be the 4th annual Pallimed meet and greet. This year we are joining with friends at GeriPal for a combined networking experience. It will be hosted at Lir Irish Restaurant and Pub with appetizers on us.  Please RSVP if you can on Facebook or email me: ctsinclair@gmail.com




4) Palliative Themes in Music: An Educational and Self-Care Exercise: Co-Editors Amy Clarkson, Amber Wollesen, and I will be presenting this interactive 1 hour session on using music as a tool in our daily work. Be watching for a post on the day of our talk, Thursday March 4th with the highlights and songs we discussed. For those in Boston, the talk is from 2:45-3:45. 

5) This Republic of Suffering: Death and the American Civil War by Drew Gilpin Faust. As mentioned in Amber's post here; Charlie Sasser blogged about it on the AAHPM blog too.  Amy, Amber and I will also be at the Book Club discussion on this amazing book looking at death during the Civil War. It's on Saturday March 6th from 12:15-1:15pm


6) Live Blogging: I will be Live blogging each day from the Annual Assembly.  Basically I will put up one post and continually update it through the day, or maybe just an AM and PM one.  That way your email inbox will not be flooded.  I believe the AAHPM blog will also have a lot of people blogging from the conference too.


Hope to see you there! Especially if you have a Pallimed 'P' sticker on!

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2004 (1)

• Bioethics Discussion Blog by Maurice Bernstein (July 2004) (Doctor)

2005 (1)

• Pallimed by Rosielle, Sinclair and others (June 2005) (Doctors, NPs)^^

2006 (2)

• Episcopal Chaplain at the Bedside by Marshall Scott (January 2006) (Chaplain)
• Life in the End Zone by Dr. Muriel Gillick (January 2006) (Doctor)

2007 (3)

• Hospice and Nursing Homes Blog by Frances Shani Parker (January 2007) (Writer)
• Reflections by Dr. Bruce Campbell (April 2007) (Doctor)
• Medical Futility by Thaddeus Pope (July 2007) (Law Professor)^^

2008 (2)

• NHPCO Updater by various writers (June 2008) (Organization)
• Transcend Hospice Marketing by various writers (July 2008) (Executive)

2009 (7)

• Bart Windrum by Bart Windrum (March 2009) (Advocate)
• GeriPal by Alex Smith, Eric Widera and others (June 2009) (Doctors, nurses and others)^^
• Onco-PRN (Oncology Pharmacist Resource Network) by Chris Ralph (June 2009) (Pharmacist)
• Hospice Physician by HospicePhysician and HPMFellow (July 2009) (Doctor?)
• End of Life - Thoughts from and MD by Dr. Jim DeMaine (August 2009) (Doctor)
• Grief Healing by Marty Tousley (October 2009) (Bereavement Counselor) 
• The Hospice Clinician Blog (Outcome Resources) by Jim Joyner (Dec 2009) (MD?, PharmD?)

2010 (4)

• American Academy of Hospice and Palliative Medicine by various via AAHPM (February 2010) (Organization)
• Hospice and Palliative Care Charlotte Region by Andrea Powell (March 2010) (Organization)
• Palliative-SW by Social Work in Hospice and Palliative Care Network (March 2010) (Organization)
• Hospice of the Red River Valley by various (September 2010) (Organization)

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The New York Times had an interesting article last week entitled  "Cyberspace When You're Dead" about the approximately 375,000 Facebook users who die annually.  What happens to the account?  (We have covered this topic before: Amy Clarkson on Pallimed Arts: "Digital Afterlife" in 2009 and my 2010 post "Blogging Til I Die")

This topic is surprisingly gaining more attention for a culture typically described as 'death-denying.'  But I guess you can't really deny death after it happens.  It is very real then and probably easier to talk about since you may still have this online connection to the person even though in real life they are gone.  I suppose it can be eerie to look at someone's last post that may have happened moments before they died like Dr. Frank Ryan who drove a car off a cliff moments after a posting to Twitter.  

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If you have not noticed by now, we have really started to increase our publishing output, so since some great articles may fall off your radar, we will start doing a monthly review to make sure you didn't miss something really good. And if you are one of the few hundred subscribers with a daily option, do not forget you can always change to MWF or weekly!

Our two most popular posts this month on social media were Emily Riegel's letter to the spouses of palliative care professionals and Bob Arnold's case review of when emotions or facts are at the center of goals of care discussions. Good ones to share with your teams maybe?

Make sure to follow, engage, like and comment with us on Facebook, Twitter, Google+, Pinterest, Tumblr and LinkedIN.  And we always appreciate it when you recommend us to your peers.

Advocacy

• CMS reimbursement for Advance Care Planning by Phil Rodgers
• Articulating the benefits and value of hospcie care by Turner West
• Last minute gift idea - advocate for advance care planning by Holly Yang
• Time for a robust HPM public engagement campaign by Ankur Bharija

Communication

• Finding respect in modern health care by Amy Clarkson
• Cases: Are goals of care conversations about emotion or fact? by Bob Arnold

Interview/News

• Cambia Awards $10M to University of Washington Palliative Care by Christian Sinclair
• Crowdfunding a palliative care service: can it really work? by Christian Sinclair
• Free CE credits for palliative care from MJHS webinar series by Russel Portenoy

Media Reviews

• Getting On: HBO sleeper comedy not shy about delicate topics by Chris Okon
• Review of Consider the Conversation 2: Stories about cure, relief and comfort by Beth Fahlberg

Narrative/Opinion

• How hard is it to get dental care at home? by Christian Sinclair
• Open letter to spouse of palliative care professionals by Emily Riegel
• Mind the Gap: specialty social workers' request of research by Allie Shukraft and Lizzy Miles

Research

• Tramadol-induced hypoglycemia: another reason not to use it by Eric Widera
• Is methadone plus haloperidol ready for prime time? by Drew Rosielle

Comment Shout-out's - December 2014 (in no particular order):
Kyle Edmonds, Clay Anderson, Bruce Scott, Ruth Hill, Kathy Kastner, Michael Chapman, George Handzo, Karen B. Kaplan, Liz Salmi, Drew Rosielle, Hal Grotke, Robert F, Michael D. Fratkin, Judy Connolly, Earl Quijada, Anette K, Jason, Tarris Rosell, Sonia Fullerton, Conrad Williams, Emily Riegel, Allie Shukraft, Marilyn Hofmann-Jones, Amy Getter, Holly Yang, Chri Okon, and a few anonymous people.

Highlighted Comment for December 2014
Drew Rosielle's comment on Cases: Are goals of care conversations about emotion or fact? by Bob Arnold - Dec 3rd, 2014

"Fact clubbing" - I'll start using that. The last few years I've called it 'The Data Dump' in my attempts to help other docs understand how it's a waste of their time and effort.

I think it's tough to teach about this on the fly to docs who don't seem to understand they are data dumping. They are taught how important it is to educate the patient and family on what's going on and feel it's an important duty and may not have a sense that it's effect ranges anywhere from being just a waste of time to frankly damaging the doctor patient relationship. I sometimes tell people (not peers, but residents etc) they are at risk of the main point their patient comes away with is 'Gee my doctor is really smart and knowledgeable' but not what you were actually trying to communicate it.

I think the most effective way of teaching around this point is in communicaiton workshops where you can get docs to role play being a patient (or being a customer at an autoshop even) and then have someone talk to them about what's going on for 120 seconds straight. Many can realize that they start glazing over and not paying attention after just 30 or so seconds. Sometimes can lead to great insights. Sometimes.

Bob; fantastic post I'm going to use this in teaching.

Help wanted
If you are interested in writing for Pallimed please contact us via any of the social media platforms or email editor@pallimed.org. If you want to help we have something you could do! Like write this simple monthly review post! Or help run one of our social media accounts (especially with Pinterest and Tumblr) - we do on the job training!

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For those of you who do not stray to far from the main blog, here is a quick summary of the posts from January 2010 Pallimed: Arts & Humanities blog by Amy Clarkson, MD and Amber Wollesen, MD.

Death and Harry Potter
Amber reviews the multiple themes around death in the popular series of the boy wizard.

I Still Do: Loving and Living with Alzheimer's Dementia
Amy discusses a writer/photographer's first hand account of watching her husband succumb to Alzheimer's.  The author even commented on the post!

Iris
Amber talks about the 2001 film and palliative care themes around the sense of time in a chronic illness.


Unclaimed
In this post, the story of an unclaimed body is something we occasionally encounter in hospice and palliative care.  Amy explores how different groups have addressed this challenge.