Pall-pourri

1)
Journal of Clinical Oncology has a lovely 'art of oncology' case discussion about arranging for a (slowly dying) young boy who was receiving hospice care to attend preschool - all the issues & challenges involved as well as the joy it brought.

2)
BMJ has a brief editorial by Nicholas Christakis decrying how poorly we do as a society in taking care of the dying, and how lack of prognostication can make things worse.

3)
Regional Anesthesia and Pain Medicine has a randomized, placebo-patch-controlled trial of the lidocaine patch for acute herpes zoster pain (not post-herpetic neuralgia for which it has previously been studied). It was a small study, and involved only 2 days of treatment with bid dosing of the lidocaine patch or placebo placed on non-blistered skin. Like with PHN, the patch showed a modest benefit in pain reduction over placebo.

Doctor-patient relationship in NYT

The NY Times had a piece this week briefly looking at the troubled doctor-patient relationship, and how it appears to be deteriorating. Insurance, the internet, lack of time are all implicated. As is this:

Dr. David H. Newman, an emergency room physician at St. Luke's-Roosevelt Hospital Center in Manhattan, says there is a disconnect between the way doctors and patients view medicine. Doctors are trained to diagnose disease and treat it, he said, while “patients are interested in being tended to and being listened to and being well.”

HT to Dr. Paul McIntyre.

More on “futility”

A couple of weeks ago Drew blogged on a short essay/case report in Journal of Clinical Oncology that addressed a physician’s struggle in prescribing chemotherapy that he considered to be futile. The same day I got my latest issue of Oncology with an article (with 2 invited responses, here and here) on patient demands for chemotherapy that clinicians feel is futile. I believe this is the inaugural offering in the new feature, “Areas of confusion in oncology.”

The Oncology article is a fairly wide-ranging piece that begins by addressing what is meant by “futile care.” The authors point out that there is no common or consensus definition [I imagine that at least some of this is one of those “I know it when I see it” phenomena]. A recurring theme in this paper is discordance of perceptions and perspectives between patient and physician. Expert panels struggling over guidelines, a physician facing a desperate or resolute patient, children not willing to contemplate “giving up” on Mom, a patient with a religious belief that “everything” must be done, third-party payers—whether private or government, and John Q. Public (i.e., “society”) in the grip of a compelling drama may have varying and conflicting perspectives.

The authors quote a 1993 article in which the reader is advised to distinguish an effect from a benefit. That dovetails nicely with an observation later in the paper that some patients overestimate prognosis because they confuse response with cure.

Not surprisingly, a major cause of the disparate perceptions is assigned to inadequate communication between patient and physician. And not all the blame falls on the physician. When each is waiting for the other to bring up discussions of goals, values, quality of life, prognosis, end-of-life issues, etc., “misalignment of perceptions” can be expected. The physician may even have thought that s/he provided adequate information on prognosis. But if they provide too wide a range of outcomes, don’t periodically come back to the discussion, or don’t check in with the patient to see what was understood, the discrepant perceptions can grow ever wider. “Lack of patient-provider communication regarding prognosis, goals of therapy, and benefits of aggressive symptom management (hospice) all play a role in the delivery of futile chemotherapy.”

There are several interesting tidbits provided that may be helpful to both experienced clinicians and to students or junior clinicians who are trying to get their heads around the issues related to futility dilemmas.

• Over 20% of Medicare patients begin a new chemotherapy regimen within 2 weeks of death
• A recent survey of oncology practices showed a range of 0-34% giving chemotherapy within 2 weeks of death
• At least one study has shown that some patients with previously treated non-small cell lung cancer would accept chemotherapy with a survival benefit of as little as one week, while others would not take it even for a benefit of two years
• Another study showed only a 25% concordance between what patients said their decision-control preferences were and the provider’s perception of the preference.
• Some patients appear to be willing to discuss hospice with a physician other than their oncologist, but not with the oncologist [is it too hard for the patient; does the patient think it will be too hard for or hard on the oncologist?]
• In one study, physicians initiated a hospice discussion 50% of the time, patients or families one-third of the time
• One-quarter of physicians will occasionally administer futile chemotherapy to maintain patient hope.
• The median length of hospice stay is no longer lengthening, but getting shorter (down to 26 days in 2005 vs 29 days in 1995); one-third enroll in the last week of life and 10% on the last day.

An important observation that I have never heard invoked in discussions among clinicians about futility, is that there insufficient information available for patients with advanced disease to access independently. Accurate but vague statements such “current treatments do not cure the cancer” are not helpful for a patient struggling with finding their own process for decision-making. There is very little to be found about the advantages and disadvantages of chemotherapy at this stage, what a patient might reasonably expect, or alternatives such as palliative and hospice care. These points relate to patient questions such as “will I feel better or worse?” (if I take the chemotherapy); “will my cancer shrink [and what does that mean in the short & long term]?;” “how do other people make decisions about these things?”

The authors’ recommendations:

• Don’t go it alone—use trusted colleagues to share concerns, avoid isolation and burnout
• Ask the patient how much they want to know, how they want to make decisions
• Bring up hospice early as a future possibility; emphasize nonabandonment and aggressive symptom management; avoid euphemisms: use “death” and “dying” [while I personally agree with that philosophy, there are cultural overlays and sensitivities than need to be considered.]
• Use family conference as a way to get the same information simultaneously to multiple people who may be family decision-makers; be prepared to share actual studies to bolster your position that there is little or no benefit to further chemotherapy and that there may be significant burden or harm [is “symptom burden” a useful construct for patients who have been focusing on tumor shrinkage? I think it is.]

Equally valuable as the main article, the reviews provide valuable nuance and perspective. One practical idea is the "differential diagnosis" of a patient request that the oncologist thinks is not in the patient's best interest. What underlies the request--unrealistic expectations? Fear of abandonment? Present hospice as a treatment [reminiscent of Andy Billings' statement that family meeting is one of palliative care's most important procedures]. "A 20-60 minute conversation between an oncologist and a patient . . . is miniscule when weighed against a lifetime of family values, traditions, culturally held beliefs, and deeply entrenched religious beliefs."

Khatcheressian J, Harrington SB, Lyckholm LJ, Smith TJ. 'Futile Care:' What to Do When Your Patient Insists on Chemotherapy That Likely Won’t Help. Oncology 2008;22(8):881-887 (free full text) http://www.cancernetwork.com/cme/article/10165/1168027

"Last Lecture" Professor Dies

Randy Pausch, the famous professor who was diagnosed with pancreatic cancer last year died today at the age of 47. (I had blogged about him on Pallimed here and here.) His initial foray into the public eye was from his 'Last Lecture' at Carnegie Mellon being posted on You Tube and getting over 3 million views on how to 'Achieve your Childhood Dreams.' This popularity led to a wonderful and inspiring book and his further advocacy for pancreatic cancer research. He is a great example of how even in the face of death, meaning can still be found, and contributions can still be made.

For those who have not seen it here is the video of his lecture below:

One of my favorite parts of the book is when he relates a story about a football coach who was particularly hard on him in drills as a child. An assistant coach inquired about how Randy felt about the coach riding him. He replied he didn't care for it too much. The assistant coach shared that it actually was a good thing because when he stopped critiquing you it meant he had already given up on you. I think this is a great inspiration for timely feedback in medical education. If you don't give it, have you already given up on the trainee who needs support and teaching?

If you have read the book, please feel free to share a part that resonated with you.

Added(07/27/08) (thanks to reader Jane for the link to the video below):

What If...Senator Kennedy Said....

“Because I am not a young man, the cancer in my brain will progress rapidly and is likely to incapacitate me in the near future. I trust that my doctors will do everything they can to prevent further seizures and to keep me in comfort. I will not endure extraordinary excess pain and suffering, while hundreds of thousand of dollars will not be spent on surgical debulking, radiation, and chemotherapeutic regimens which do not work.

Modern medicine cannot cure my cancer, but it can keep me comfortable and free of pain. I have already contacted the Massachusetts General Hospital Hospice program.”

Wow! That would have been very surprising indeed. But he did not say that. Dr. Robert Cohen proposed this different approach in a recent guest post on the Freakonomics Blog.

Imagine the reactions if Ted Kennedy had said this. Some might say he is trying to impose socialized single-payer medicine by 'sacrificing' himself and guilting us into not choosing aggressive treatments. Others might see this as a noble gesture and accepting of a situation that may not have a successful outcome. If he had said this would he just faded from the frenzied media circles, or would this start a national conversation about medical choices and the uncertainty of medical prognostication?

Could end of life care be a political hot spot in the upcoming US Presidential race? Think if all those stories about potential hastened death around the world happened in the US in the next few months.

(HT: Scott L)

A Palliative Care View of "Hopkins"

ABC has been featuring residents from Johns Hopkins University on the reality docudrama "Hopkins" on Thursday nights. The show goes to where the action is by focusing on the emergency department, surgeons, and pediatric ICU. Overall the show manages to capture life as a resident pretty well even following the difficulties outside the hospital for one of the physicians going through a divorce. I had high expectations of palliative medicine being featured during the show given that over 6 hours there would likely be some end-of-life issues cropping up. But after 4 episodes the demonstration of palliative care skills has been mixed.

Have any Pallimed readers been watching this show?

I am curious to how some of you responded to a pediatric intensivist* who suggested to "just let the child die" during a informal doctors conference about a toddler with a dilated cardiomyopathy who had a cardiac arrest during anesthesia induction about to be put on ECMO? You can watch it yourself...EPISODE 4 available online; move to a little less than a quarter of the way through the episode. You have been warned by the way, seeing the child unresponsive and actually coding was very difficult to watch for me even being through lots of codes and seeing deceased, lifeless patients.

Here is the full text of what he said on air (after what was edited I presume by the TV producers):

(In hallway with cameras, alone)

PICU Attending #1: We don't know hom much damage has been done. And there is some disagreement as to whether we can save the heart or not.

(Cut to conference room with lots of doctors, no patients/families)

PICU Attending#2: It is my opinion that we just let the child die. ECMO would be a bad idea. But I suspect that I am in the minority.

#1: Why would you say that? We don't have the biopsy back yet. If the biopsy shows that he has acute myocarditis...then we could...uh..ride him thruough this storm. Now if it shows that he has got..uh you know scar there..well..yeah...then we got a problem.

#2: What do you think the biopsy is going to show?

#1: I agree that this is likely to be old.

(fade to black after seeing them both stand quietly not looking at each other, appearing demoralized.)

Interestingly this is how the above situation is described on the website synopsis:

"let him deteriorate and provide palliative care or attempt a risky heart transplant if one becomes available."

But they never actually talk about palliative care on the show. Can someone else remember where they said 'palliative care?' I can hear those words in the media from a thousand paces.

I think it is important to realize this scene and the doctor's words got a lot of outrage on the Hopkins/ABC website in the Episode 4 Talk Back Q& A section. People are calling for his firing, and saying he should not be a doctor. The child eventually made it through the situation causing more outrage on the message boards. And further anecdotal evidence for the public that 'doctors can be very wrong.' To me this scene is part of the frank discussions physicians may have every day, especially doctors in the ICU. Sometimes opposing views need to be heard even though they may be unpopular to make sure there is justification for the current plan of action. The attending even pointed that out by acknowledging his 'minority' view point.

While palliative medicine as a specialty is lacking on the TV show (Hopkins surprisingly does not have a palliative medicine fellowship), the Hopkins/ABC website has video responses from Dr. Holly Yang from San Diego Hospice about different situations in each episode that could have been approached in a different way. You sometimes might have to scroll through the responses to find Dr. Yang. Too bad they had some audio difficulties with some of her segments.

Hopefully we may run across good examples of palliative care in the last two episodes this Thursday night and next Thursday night on ABC. Check your local listings. (There I have finally said it. Now I need to cross off "Stop the Presses!") All the episodes are also viewable online and on Itunes.

We may have to do a code count for the show to see how they portray CPR. Any volunteers?

* One commenter dubbed him a "insensivist" I got to remember that one.

Anna Pou Interview

Dr. Anna Pou, the doctor who was accused of murdering patients during the aftermath of Hurricane Katrina gave a rare interview covering her experiences and discussing a new law to cover medical personnel who assist in a disaster. The grand jury and attorney general eventually dropped the charges but she still faces two civil suits.

Here are some quotes from the Associated Press article:

When nightfall came, the hospital and the city were in darkness. Water pressure dropped, toilets backed up and the temperatures began to swelter.

"The smell got to be rancid in no time," Pou said. "It burned the back of your throat."

...

Pou said staff struggled to climb stairwells, carry supplies, and spent two-hour shifts squeezing ventilators to keep patients alive.

"The heat was so terrible, it wore you down," Pou said. "We were trying to keep the patients comfortable. The 9-year-old daughter of one of the nurses even took shifts fanning them."

...

"I felt very alone," Pou said of her year of fighting the criminal accusations. "Even if people were around me I felt an intense loneliness. It was as if no one knew what I was going through."

An International Review of Hastened Death

(Hopefully not a recurring feature)
*Please read disclaimer at the end of post*

The New York Times #6 most emailed article today is about the underground practice of hastened death via the procurement of barbiturates in Tijuana, where the medications are intended for euthanizing animals, not humans. It is interesting this practice fits under neither commonly used terms for hastened death by medical means:

"euthanasia" - the administration by a medical professional (or other person) of a prescribed medication with the intent of causing a hastened death

"physician-assisted suicide" - the self-administration of a medication prescribed by a physician with the intent of causing a hastened death

This article describes people obtaining the medication without a doctor's prescription, therefore 'physician-assisted' is a disqualified descriptive. They merely need to show a picture of the medication they want at the Mexican veterinary stores. So I guess this is simply 'suicide?' Although I think 'suicide' is too broad to define the particulars about a situation where someone is in the terminal phase of a condition versus someone suffering from a severe depression but no terminal illness. But to label this 'terminal suicide', 'hastened death in the terminal phase' or some other contortion feels clumsy and is bound to cause even more confusion.

Regardless of the term used, the issue has been made more relevant with a couple high profile cases of medicine and hastened death.
In Australia, Exit International and Philip Nitschke have been making the papers and TV (and are featured in the NYT article) with a public campaign to legalize euthanasia including You Tube Videos, film screenings, book promotions (attempts at banning it are underway in Australia and New Zealand), workshops and political initiatives. More focus has been on Mr. Nitschke and his group since the recent manslaughter conviction of a woman who gave a barbiturate to her partner who had Alzheimer's. Another recent case is also being featured of a woman who was depressed but not terminally ill who supposedly relied on information form Exit International's materials to kill herself.
In Germany, a lawyer/politician advised, and videotaped a 79 year old woman who prepared and self-administered a 'lethal cocktail.' The woman was not terminally ill but chose hastened death because she did not want to go to a nursing home. The politician, Roger Kusch, was inspired by Dignitas, a pro-euthanasia organization based in Switzerland who has many people from Germany requesting its services.
In Scotland, a Member of Scottish Parliament, Margo MacDonald has filmed a documentary with the BBC and proposed legislation to adopt the euthanasia and assisted suicide laws similar to The Netherlands.
In Italy, a case eerily similar to Terri Schiavo and Nancy Cruzan is being discussed publicly and was recently covered in TIME magazine. A 20-year old woman in a car accident (in 1992) now comatose and with a feeding tube that her father wants to have removed (and has fought for since 1999) was allowed by Italian courts to stop her artificial nutrition via feeding tube despite much opposition. The case is now pending appeal despite already having gone to the Italian Supreme Court in 2002.
In Canada, Samuel Golubchuk, an 84 year old man whose family fought hard to continue aggressive life-prolonging measures died 9 months after doctors initiated discussions about end-of-life decisions. He died on full life support measures. If his life support was withdrawn it would have been illegal since a court ordered physicians and the hospital to continue partly based on the family's belief of hastening his death would be a sin under Orthodox Jewish law. The case was to be heard by a full court in September. Doctors refused to care for him, likening his medical treatment to 'torture.'In England, a man who was refused Sutent, a prostate cancer drug, by the National Health Service suffocated himself.

So why is this all important to palliative care?
Because guess who thinks about these things:

• your patients
• their families
• medical professionals who consult you
• the public

and they may never bring it up with you for a multitude of reasons. Or they may hint at hastened death, but never start an open discussion. Or they may make a sly joke about it, waiting to see how you respond. Or they may assume what is good standard palliative care is really euthanasia.

Good hospice and palliative care practices can help people discover hastened death does not have to be the easy way out. If the lines are too blurred between the legal and illegal our field has significant trust to lose with the public and our peers. Being educated and aware of the public debate over hastened death is a responsibility for palliative medicine to ensure the safe, ethical, and legal care of the patients and families entrusted to us.

(My Standard Disclaimer: Pallimed, Dr. Sinclair and his current and former employers and states do not endorse or practice euthanasia or physician-assisted suicide, but do encourage the open, non-judgmental discussion of these topics for educational and ethical discourse about this controversial area of medicine. Links do not represent endorsement.)

Pal Pourri

Some palliative highlights from the web:

The New York Times published an article on nurses being attacked on the job. 12x the rate of violent injuries compared to the rest of the private work force! I know many nurses could share stories about being a victim on the job. In March there was even a murder of an ICU nurse in the ICU as a retaliation by a son for the death of his mother. Sadly it was a case of mistaken identity. What implications it has for those who deal with dying patients all day no one has ever commented.

A team blog called Mothers In Medicine had a highly commented post on crying in medicine. They had another good post this week on being the child of a doctor. With a good follow-up post from a commenter.

Maggie Mahar updates us all on the wild action in Congress around the Medicare physician fee cuts which would be a large impact on hospice and palliative care doctors. Long but important reading if you get paid for being a doctor. (HT: Kevin MD)

The WSJ highlights the financial obligations oncologists are going through to obtain expensive (100k/year) meds for their patients. Surprise, now cost is being discussed upfront with patients!

Jennifer Bunn, RN blogs about a BMC article (open access) on how health care workers would respond during a pandemic. Think about if your city was flooded, or had a aggressive contagious deadly virus, or had a biohazard catastrophe? What would you do?

JAMA has an opinion article about being stalked online by patients (sub required). You may not think you have an online footprint, but try Googling yourself and see what you get. And no I am not the director of Middle Eastern studies for the School for International Training in Vermont.

Iowa Floods Affecting Hospice Care

By now the news about the 2008 Midwestern flood is no longer the lead story in the news cycle. The president has been to some of the affected areas, and the presidential candidates have stopped by as well. Disasters of this magnitude affect the health care in a community because your coronary plaque or impending stroke isn't going to wait for the flood water to recede. A good friend of mine David Wensel, DO is a hospice & palliative medicine physician for Hospice of North Iowa in Mason City, IA, and he was kind enough to answer some questions about how the floods affected hospice operations during a disaster.Pallimed: Please give us some background on Mason City and the Hospice of North Iowa.

Dr. Wensel: The Winnebago River cuts through the heart of Mason City and flood stage for it is above 15 feet because of the 15-foot levee built in 1961. The river crested at over 18 feet so the levee did not fail. The water went over it but it did flood many areas of Mason City and shut down the city water treatment plant. About 140 homes have been condemend in a city with a population of about 30,000. Hospice of North Iowa serves 16 counties and has an inpatient unit with 6 occupied beds at the time of the initial flooding.

Pallimed: What is the most significant way the floods impacted home hospice care in Mason City?

Dr. Wensel: Many of our team members were unable to get to patients' homes due to road closings. The greatest impact to our inpatient unit was the lack of water. There was no direct impact to the buildings or offices of Hospice of North Iowa, however many of the staff could not come into the office due to road closings.

Pallimed: Can you share how some of the emergency planning went into effect?

Dr. Wensel: Our emergency planning went into effect as soon as we knew the river was going over the levee and we would lose water (from the water treatment plant). Our plan was to ensure that the patents and families at our inpatient unit would have appropriate care and if needed to be transferred to a facility that could care for them. We were able to continue providing care for our patents and families without interruption.

Pallimed: How did hospice agencies deal with staff who needed to look after their own concerns as well as for the patients and families?

Dr. Wensel: Several of our staff members did get flooded and we provided them with the time and support they needed to first care for their families. Once that was done, we asked our staff who was available to contact by phone or in person all the patients that were enrolled in hospice to ensure they were provided the care they needed. The police and fire department were available to help evacuate anyone who needed it.

Pallimed: Were there offers of support from other hospices locally, regionally or nationally?

Dr. Wensel: We did get offers of support from several of the hospice agencies in Iowa but the greatest help came from our hospital and parent organization. Hospice of North Iowa is owned by Trinity Health, the 4th largest Catholic Healthcare network in the US. Within 24 hours we had large amounts of water and several large trucks that could produce potable water. The CEO from Trinity arrived with a large donation from all the other hospitals within our system to help all the employees affected by flooding. It was truly amazing to see all the support and kindness offered by total strangers.

Pallimed: How was the coordination with hospitals or nursing homes?

Dr. Wensel: Many of our hospice patients are living in nursing homes, so the hospital and our hospice offered support and water to the nursing homes during the entire time of the flooding. None of the local nursing homes were flooded but did need help with staffing and water. Our hospital, Mercy Medical Center-North Iowa had to postpone elective surgeries so that only the emergencies could be handled due to the lack of water.

I was called into the hospital to admit a patient who suffered an intracranial hemorrhage and was unable to drive there because the roads closed due to flooding. We had to work with the hospitalist service and the nurses, chaplains, and social workers already at the hospital to get the patient and family the support they needed.

Pallimed: What are the important lessons learned from the flooding to share with other hospice agencies as they look at their own disaster planning?

Dr. Wensel: The greatest lesson learned is to plan for the worse case scenario. As a hospice think about if you lost half your staff, some of your patients had to be evacuated, and you had no safe water. You can never plan for every possible problem that might come up, but it would be very helpful to talk through different disaster plans with your staff. You never realize how wonderful it is to wash your hands, brush your teeth or take a bath until you can't. I had never thought about all the things we do to care for patents that require water.

Pallimed: Any other stories you care to share about the flood?

Dr. Wensel: As always the greatest stories are those of our staff and their commitment to caring for patients and families. Many of the sacrifices will never be known or made public. I can only say I was amazed how we rose to the occasion and accomplished the seemingly impossible. I am so proud to be one of the medical directors for Hospice of North Iowa, and thankful that I get the chance to work with the people here everyday.

Geroge Carlin Had a Way With Words

Being a palliative medicine blog, you might think we would post an obituary here every once in a while, but there would be too much to say about too many wonderful people that we may never get back to the regular programming. One notable exception is the recent death of George Carlin, the stand-up comic who died this week, most famous for his "Seven Words You Can't Say On TV." If you looked closely, one of his constant philosophical/comedic themes was the use of words and how we use 'soft language' to make us feel better about very tough situations.

Palliative Care professionals understand the power of words; they are our tools like a surgeon's scalpel. The words we use must be discussed, studied, understood, re-examined and respected. That is why seeming pet peeves such as 'opioid vs. narcotic' are really about demonstrating knowledge, revealing potential biases, and a reflection of what our culture admires and despises. And for that I am glad for George Carlin's profanity laced comedic examination of what words can do.

The following 7 minute clip has words some may find offensive, and it won't get you the promotion at work if you play it on '10' in your cubicle. Go to 6:00 for an examination of euphemisms for death.