Tweet

I drove from Kansas City to Oklahoma to bury my father in a Veteran's Cemetery two years ago this summer, not long after Father's Day. I have not really thought much about that day in the following two years.  Which now feels kind of strange. Shouldn't I be think about it like a normal grieving adult child?

It occurs to me now as I anticipate my wife and kids to celebrate my tenure as a father, that days like these are also memorial days for so many people.  Although I have talked with many people who have also lost one or both of their parents, it never really occurred to me as it is this week, the profound impact of what it means to 'celebrate' Father's Day without your father.

Tweet

David and Debbie relax before the first chemo treatment (Photo Credit: David's Videoblog)

This summer you may meet many superheroes at your local cinema.  A frequent story telling device in the superhero genre is the origin story.  By showing how a superhero emerged from humble beginnings and transformed into a powerful force for good, one can give meaning to context and motivations and lead to a better understanding of who that person is.  In meeting many hospice and palliative care professionals over my career I have always enjoyed hearing how they discovered the field.  For some it is a startling negative exposure to uncontrolled symptoms or hope-crushing poor communication, and that has driven them to make a difference in the world.  For others a wise mentor may have guided them during their professional development to become a great clinician.

We experimented with the origin story back in 2010 with an entry from Dr. Pam Harris sharing her origins story coming from Physical Medicine and Rehabilitation.  Today we are re-debuting the Pallimed Origins with a new format: audio!

The first new-installment kicks off with Debra Parker Oliver, a professor and researcher at the University of Missouri with a background in social work and hospice management.  I interviewed her in early May 2013 in Kansas City, MO during a meeting with her research colleagues. Many of you are familiar with Debbie Oliver and her husband David from their moving plenary session at the 2013 AAHPM/HPNA Annual Assembly or from their video blog on their journey through health care.  Lyle Fettig wrote a great review about the plenary back in March.

Take a listen to our interview with Debbie Oliver and please give us feedback on the interview, format and new series.
    

(A note on this series: We are using Soundcloud to host the audio files for Pallimed Origins (click here if you cannot find the embedded audio above).  The audio files can be downloaded for offline listening as well. We already have a few interviews in the can, but I am always looking for more interesting stories, so if you know anyone please make sure to contact editor@pallimed.org, and we will get them on the list. Any discipline, any background are welcome.  Interviews can be done in person, by phone or internet.)

Tweet

Back in March, the contributors of Pallimed got together for a hard conversation. We were only missing a few people but it was still a sizable gathering at a restaurant late one evening in New Orleans. We have met at Academy meetings before, really to check in with each other and how all of us were doing in our professional and personal lives.  But this was a little different.  None of us were posting with much regularity for the previous 18 months.   Compared to where we were in 2008, 2009, and 2010 we all recognized we had many more responsibilities and working on Pallimed really didn't always fit into our schedule despite the best of our intentions.

But there was a different spark that night, different from years past.  This spark was probably brighter because of the darkness from being dormant for much of 2011 and 2012. We challenged each other to not let this great opportunity to fall by the wayside.  With the knowledge and wisdom from our schooling and clinical experiences, we recognize there is also a responsibility to share information, to engage in a conversation which can change the world before any one person becomes our patient.  Pallimed is a strong platform for sharing and we realized we did not want to just keep it to ourselves, so we are now reaching out to many new voices, including yours.

I'm asking you, whoever you may be, reading this post to join me in walking down the road that leads to awesome.

Do you want your patients to have doctors and nurses who understand good symptom control?
Do you want your community to think differently about how they approach end of life?
Do you have conversations about pain medicine portrayal on TV and film?
Do you wish your parents understood what you do for a living?

See your wishes for the world and the pain you want to relieve through this platform and together we can make a tremendous difference.  This site is not about one person alone late at night writing on the website.  It is about ten, one hundred, one thousand people alone late at night writing on the website joining in a cacophonous conversation that spreads across the globe to support the good work you do.  Supporting Pallimed and other hospice and palliative blogs is about investing in yourself.


2006 - 1st Anniversary
2007 - 2nd Anniversary
2008 - 3rd Anniversary
2009 - 4th Anniversary
2010 - 5th Anniversary 
2011 - 6th Anniversary
2012 - 7th Anniversary

Photo Credit: Adapted from 8 by chrisinplymouth under CC By-NC-ND 3.0

Tweet

CASE: Mr. K was a 41 year-old white married male who came to the hospital for a tissue biopsy and was subsequently diagnosed with advanced adenocarcinoma of unknown primary origin. His disease had progressed to the point where the tumors could not be debulked. The previous week Mr. K had been working full time and leading a very active lifestyle, so his diagnosis and prognosis came as a shock to him and his family. The primary medical team consulted the Palliative Care Team (PCT) to assist with symptom management, discussion of treatment options and goals, and planning of end-of-life (EOL) care.

Once Mr. K became physically comfortable and accepting of his poor prognosis, he voiced concerns about how to talk to his 7 year-old son and 9 year-old daughter about his illness and likely death. The RN for the PCT provided Mr. K with books that aid parents in discussing death and dying with children, and the behavioral medicine specialist with the PCT assisted Mr. K in applying these materials to the conversation he would have with his children.

First, as a means of understanding each child’s developmental level, the behavioral medicine specialist asked Mr. K to simply talk about his two children – how they spent their time, what subjects were they good at in school, and what, if any, exposure they had to the death of a loved one or pet. This discussion naturally led into Mr. K identifying words and concepts about illness and death that his children would understand. Mr. K decided he would say the following to his children, “Sometimes people get sick and the doctors can cure them. Sometimes people get sick and the doctors can’t cure them. The doctors don’t think they can cure me, but I am hoping for a miracle because I don’t ever want to leave you.”

Although his message was brief, Mr. K feared he would emotionally break down when having this conversation with his children. He wanted to be “strong” for them so that they would not be too frightened. To promote his sense of self-control Mr. K practiced his conversation with the behavioral medicine specialist who in turn coached him on breathing techniques that would help him stay in control of his emotions.

The practice helped, but Mr. K still feared that “we’ll all end up crying and that’s not going to any of us any good in the long run.” So then the behavioral medicine specialist worked with him on identifying specific ways in which he was a father to his children, e.g., he helped his children with their homework and he read to them every night before they went to bed. She suggested that after he gives them the bad news and answers their questions, Mr. K might reassure his children that he’s still going to help them with their homework and read to them every night.

DISCUSSION:
Young children who are informed of their parents’ terminal illness are less anxious than those who are not told , but many terminally ill parents are daunted by this emotionally stressful task. Deciding how to break the news to children is made more difficult when taking into account the developmental level of each child. Palliative Care Teams often have several books available that guide parents through the process of discussing death and dying with their children. Parents’ abilities to apply the information in these books can be further enhanced with a session provided by the behavioral medicine consultant. The individual session allows parents to tailor their approach to their own families and to practice having and controlling very powerful feelings.

References
1.  Seccareccia D. (2008). When a parent is dying: Helping parents explain death to their children.  Can Fam Physician. 54 (12): 1693-1694. (OPEN ACCESS PDF)

2. Rosenheim, E., Reicher, R. (1985). Informing children about a parent’s terminal illness. J Child Psychol Psychiatry Allied Disc. 26:995-998.

3. Siegel, K., Raveis, V., Karus, D. (1996). Pattern of communication with children when a parent has cancer. In L. Baider, L. Cooper (Eds) Cancer and the family, pp 109-128. John Wiley and Sons: New York.

4. Sinclair CT. (2012) What is the right age for chilldren to go to a funeral? Pallimed [internet].

Tweet

Tweet

The wait was too long.  We had to change plans.

I arrived home late after a long day at work and my wife asked if I wanted to go to that new restaurant everyone had been talking about.  We hopped into the car and drove off, not really thinking about a reservation.  We both groaned when the restaurant came into sight and we saw throngs of people waiting outside.  "Maybe it's not as bad as it looks," I said as I jumped out of the car to check, only to find out there was a 90 minute wait.  As I walked back to the car, I had already made up my mind to go down the road to an old standby.  My wife readily agreed without any deliberation.  Relief of hunger superseded novelty as we made a restaurant selection.

Of course, choosing a restaurant on a Friday night is nowhere near as complex as medical decision-making.  We had the opportunity to choose between two appealing restaurant options with guaranteed good conversation at either place. Patients sometimes choose between seemingly "bad" and "worse" options.  How might the decisions be similar, though?  When the rubber meets the road and we actually have to make a decision, the facts and assumptions surrounding the decision might have changed, which may affect the decision.

Think of a 78 year old woman with advanced COPD recently referred to hospice.  She falls walking to the bathroom and fractures her proximal femur.  She presents to the emergency department and undergoes evaluation by an orthopedic surgeon who raises the option of a percutaneous fixation of the fracture.  The patient says she does not want any surgery.  She has decision-making capacity.  Palliative medicine is called to admit the patient to the palliative care unit.  Further discussion with the patient reveals that she has always said she would not want surgery because her husband died shortly after a major vascular surgery ten years ago.  She's worried about going to a nursing facility even if she survives, and though she was told otherwise, wonders if perhaps the fracture will just heal on it's own over time.  The palliative med physician further explores concerns and discusses her likely prognosis with or without surgery.  He reassures her she will most likely be able to go home after surgery since she has excellent caregiver support and since it's anticipated she'll be able to bear weight on the leg very soon after surgery.  Together, a decision is made to reconsult orthopedics and proceed with surgery.   

The woman arrived with a set of assumptions which weren't 100% accurate, partially driven by fears derived from past experience.

What about when the patient doesn't have decision-making capacity?  If you're fortunate, the patient will have spoken in depth with their surrogate and will have completed an advance directive which can serve as a guide as you make decisions.  While helpful, living wills are often times written in vague language which may be difficult to interpret. POLST can help with specificity of preferences, but even then, it may have been completed based on a set of assumptions which might have changed.

What do you do when one decision seems to be in a patient's best interest, yet the patient's advance directive points towards another decision?  In an article published in JAMA Internal Medicine, Alex Smith, Bernie Lo, and Rebecca Sudore describe a framework to tackle this challenging dilemma and demonstrate in two cases how to use the framework. 

Here are the questions they recommend asking yourself:

1. Is the clinical situation an emergency that allows no time for deliberation?  
2. In the view of the patient's values and goals, how likely is it that the benefits of the intervention will outweigh the burdens?
3. How well does the advance directive fit the situation at hand?
4. How much leeway did the surrogate provide for overriding the advance directive?
5. How well does the surrogate represent the patient's best interest?

In the article figure, they describe how the answer to each question might tilt the scale towards following the patient's advance directive versus going against the advance directive in support of a "best interest" decision for the patient.  For instance, if your patient is a veteran and has indicated on a standard VA advance directive a wish for their surrogate to use the advance directive as a guide, this would tilt the decision towards the best interest of the patient, even if it seems to conflict with the advance directive. Once weighing how each question tilts the scale, you will hopefully be in a better position to resolve the dilemma.

I'm glad the authors have drawn attention to this dilemma.  The advance directive can inadvertantly be a conversation stopper, i.e. "Well, the living will says such and such, so I can only assume that they would/wouldn't want such and such."  What's the number 1 pearl for successful palliative care consultation, though? Assume nothing, ever.  Don't anchor to the wrong goals of care, or assume the patient doesn't have mixed goals of care.  The proposed framework invites providers to use the advance directive as a conversation starter, especially when it doesn't seem to make sense.    Explore your intuition with curiosity, or else you might end up in Abilene with your patient and their family along with you.  (Apologies to those readers from Abilene- I'm sure it's a lovely place.)  Remain open to the possibility that the advance directive made sense all along and you were the one with the misassumptions.

Just like any medical decision, patient centered goals of care should be at the center of any framework.  At the heart of the dilemma is the question, "what do you do when a treatment does/doesn't contribute to the patient's goals of care yet the patient's advance directive seems to indicate you should do the opposite?"  Question two of the framework carries significant weight, and in fact, should serve as the basis for deciding what is in the patient's best interest.  A circumstance might still arise where you go along with an advance directive which seemingly contradicts one of the patient's goals of care (e.g. emergently intubating a patient with a very poor prognosis when the patient has selected intubation and related interventions on a POLST form).  In that event, it makes sense to quickly delineate a time-limited trial of therapy and reevaluate progress overtime as benchmarked against the patient's goals of care.

A few words of caution.  Jurisdictions vary with respect to how much leeway surrogates may have.  Be aware of applicable statutes and the fine print of the directive.  If the directive prohibits leeway, yet you and the surrogate both feel strongly that a contradictory decision is in the patient's best interest, then carefully consider the options.  Consider meeting with other family (along with the surrogate) to review the decision.  Consider an ethics consultation and/or discussion with your legal department.  (For the reasons above, I'd much prefer if standard forms "nudged" people towards permission of leeway, making it the default option yet giving people the option to write out specific decisions which are inviolable.)

Lastly, the "scale" in the article's figure best fits a scenario where an advance directive indicates a preference against medical intervention yet the provider thinks intervention might be in the best interest of the patient.  This slightly limits the generalizability of the figure, making it a little harder to apply to a circumstance where a directive indicates a wish for intervention yet the provider thinks the intervention would not be in the patient's best interest. With this small weakness aside, I think the authors ask the right questions and one can easily extrapolate the model scale when needed.

What do you think about the framework?  Join the conversation below or at Geripal.

Tweet

You drive down a busy expressway amidst thousands of other vehicles and a billboard jumps out at you.  In the font of confidence, it reads, ""The first step in fighting cancer should be a second opinion."  The billboard informs you of the location of the nearest Cancer Treatment Center of America (CTCA), "only" about 130 miles from the billboard.

When I saw this billboard, my initial response was to recall a recent article about CTCA which challenged their dubious centerpiece claim: Patients with cancer who receive treatment there survive longer than those who don't.  The article pointed out significant selection bias in CTCA's data.  Could individual patients have outcomes comparable to any other cancer center? If the center uses best practices in oncology (including appropriate provision of palliative care), then I have no doubt that some patients have a good experience at the center.  Even though, several patients or their relatives have asked me about the center, none of them have been evaluated or received treatment at CTCA.  At least a few of these patients (or a family member) have gone as far as calling CTCA but haven't gone any further.

Enter a salient point about my practice: I work at a safety net hospital where many patients either have Medicaid or no insurance.  They will never receive care at CTCA for this reason.  But they'll still see the billboards and hear the ads on TV or radio.  Patients in a safety net setting are more likely to present with advanced disease and a poor performance status.  The risks of cancer directed therapy sometimes outweigh the benefits at the time of diagnosis. The likelihood of "early" palliative care referral may increase.  Patients and their families face a double whammy.  You have a terminal cancer and cannot receive any cancer directed therapy.  Without any good way of independently verifying the latter news, how could you not wonder if perhaps CTCA would be a better option? Even though my patients have access to experts from an academic National Cancer Institute center and a full interdisciplinary palliative care team, I cannot fault them for wondering.

I won't debate CTCA's right to not-so-subtly suggest that all cancer care in my city is substandard and once you receive the diagnosis, the only acceptable approach is to make a nauseating three-plus hour car trip to another city, far away from the family, community, and spiritual support which the patient may already have locally.  At the same time, I reserve the right to be irritated.  If a patient asks me about a second opinion, I have several excellent options locally, thank you.  Ranting done, though.  Onto the kernel of opportunity.

An anxious daughter tells you she saw this billboard. She asks if it might be an option for her father who has advanced lung cancer and is hospitalized for hypercalcemia and delirium.  It's time to find a chair for her and yourself if you haven't already.  She trusted you enough to ask you about it.  You can win further trust and more.  How?  Turn it into an opportunity to educate, discuss and explore goals of care.

1. "No stone should be unturned": Acknowledge the desire to look into all possible therapies which may benefit the patient.
2. Ask her what she's found out about the center.  What specifically appeals to her?   Listen for information which provides further clues to how she views the goals of care. Resist the temptation to explain immediately why the approach wouldn't work. Reflect outloud those outcomes which seem most important to her.
3. Ask her to review what she knows about her father's condition and treatment approaches discussed previously by you or your colleagues.  There will likely be questions about why certain cancer directed therapies aren't appropriate for her father.  Make sure to address these questions.  Incorporate your recommendations for how to address the concerns raised in step 2.
4. Invite her to give your opinion on the center.  By now, some patients or family might not even need your opinion, but many still will want it.  Give your opinion- it's OK.  If you're not sure what to make of some of the claims the daughter heard, acknowledge that. If you are confident that you or your colleagues adhere to best practices in oncology care, it's also OK to say that.  While treatment may vary some from center to center, people sometimes assume that there's greater variation than actually exists.  You don't need to belabor the point, though. You're not here to defend yourself, your colleagues, or your institution.  You're here to help a woman who is in normative anticipatory grief.  She's yearning, which CTCA capitalizes on in their advertisements.  Of course, it's normal for her to want her father to receive the best care possible.
5. If the desire for a second opinion remains, offer to help arrange one locally, if appropriate.  If the patient can travel further, you may also mention other options if more appropriate.   I am obviously not suggesting there is no value in second opinions.  Sometimes, the value comes from reassurance that the first provider is "on target" and occasionally, the patient will benefit from a different treatment approach. 
6. If  the patient or family is on the verge of making a trip for a second opinion, help them think through the logistics of travel.
7. Above all, ensure non-abandonment and address emotion.  Even if the patient goes far, far away, you are still likely part of the patient's care team.  How might it be destructive for a patient or family to go to a second opinion and not be sure if the original providers will care for them when they come back?  

Alex Smith recently commented on it at Geripal, rightfully pointing out the paucity of information about palliative care on CTCA's graphically pleasing website.  I single out CTCA here, but they are not alone in the creation of unhealthy skepticism about local care.  I wrote about this topic a few years back.   Be irritated, if you are.  It's justified, in my opinion. Just don't take it out on your patients or their families when they bring up the possibility of a second opinion far, far away.  See it as an opportunity to educate, strengthen relationships, and provide support.  

Photo Credit: "Drought vs Irrigation" by Poizon Myst, licensed under Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Tweet

I read the ASCO Post when I’m on airplanes.  At least I do, below 10,000 feet… and after I have finished the Sudoku.

Tweet

The exact origins of Memorial Day are not exactly agreed upon. Many cities claim to be the founders of this holiday. The tradition, however, dates back to Civil War times. At one time Memorial day was known as Decoration Day, as it was the day families and friends of fallen Civil War soldiers would choose place flowers and "decorate" the graves.

The first official Memorial Day was May 30th 1868, after the day was declared by General John Logan, commander of the Grand Army of the Republic (a veterans' organization). The holiday was adopted by Michigan and New York and then by all the Northern states through the late 1800's. The Southern states had there own days they observed and did not recognize this holiday until after WWI (several Southern states still have a separate Memorial Day type holiday to honor confederate soldiers). Apparently the date, May 30th was chosen as it was not the anniversary of any battle.

At first the holiday was just to honor the Civil War dead. After WWI, Memorial Day changed to honoring all of Americans who died fighting in any war. Now it is often seen as a day to remember all who have died. (I remember going to the cemetery to decorate the graves of family members on Memorial Day when I was young.) In 1967, the name of the holiday was officially changed to "Memorial Day" and in 1971 the National Holiday Act changed the date of the holiday to the last Monday in May, creating a very convenient 3-day weekend. There has been for several years a push to move Memorial Day back to May 30th in order to try to give some meaning back to the day (so it's not just the long weekend when the pools open).

The top photo is from Arlington National Cemetery. Every year around Memorial Day, the 3rd U.S. Infantry Regiment or The Old Guard, in a tradition called "Flags In", places small flags in front of all graves in the cemetery.

The Fredericksburg National Cemetery hosts an annual Luminaria each year for Memorial Day. Approximately 15,300 candles are placed by volunteers on each of the graves (80% of which are unknown soldiers).

I have often wondered about the significance of the red flowers being given out for donations around this time every year. Inspired by the poem, "In Flanders Fields" (poem below) by Canadian WWI veteran and poet John McCrae, the Veterans of Foreign Wars take donations for their "Buddy" Poppy every year around Memorial Day. Theses poppies are assembled by disabled and needy veterans. Since 1922 this program has been raising money for veterans and their families through the poppies.

In Flanders Fields

In Flanders fields, the poppies blow

Between the crosses, row on row,

That mark our place; and in the sky

The larks, still bravely singing, fly

Scarce heard amid the guns below...

We are the Dead. Short days ago

We lived, felt dawn, saw sunset glow,

Loved, and were loved, and now we lie

In Flanders fields...

Take up our quarrel with the foe:

To you from failing hands, we throw

The torch; be yours to hold it high.

If ye break faith with us who die

We shall not sleep, though poppies grow

In Flanders fields...

Originally posted to Pallimed: Arts and Humanities

Tweet

Modal verb (n.): a verb such as can, must, may or will that is used with another verb (not a modal) to express possibility, obligation, permission, intention, etc.

Mindmap of Modal Verbs via http://balanbalanbalan.blogspot.com/