Friday, December 16, 2011
|Image credit: Wikipedia|
As one of the most famous outspoken atheists of this era, his thoughts on being diagnosed with an incurable disease would be a powerful insight into how atheists might approach illness and death. Where others might retreat from the public spotlight, Hitchens attacked his cancer through writing.
As a doctor caring for patients facing their own mortality, understanding their spirituality becomes an important part of caring for the whole person. I have seen many caring family members and friends inquire to me if their was enough time to get the appropriate clergy to help a patient convert or be saved. A person dying as an agnostic/atheist or even not the right religion becomes a very important focus for some people. Some have asked me or chaplains if we have ever seen any 'deathbed conversions' or someone who died without being saved. I never really expected this before I became a palliative medicine fellow.
What surprises me about the inside peek that Hitchens gives us with his writings is that many of his feelings, thoughts and experiences are really about the human condition and I have seen and heard similar things from religious patients as well. In reading his articles it helps me understand that despite all our differences we are all human and as we die our experience is both unique and universal.
I wanted to share a few choice quotes from his articles here. Any one of them would be a good review for your team or learners on discussing the different approaches to dying that our patients experience.
The quotes come from the following Vanity Fair articles:
Unanswerable Prayers - Oct 2010
Miss Manners and the Big C - Dec 2010
Unspoken Truths - June 2011
Trial of the Will - January 2012 (published posthumously)
On stories about any possible deathbed conversions:
In which case, why not cancer of the brain? As a terrified, half-aware imbecile, I might even scream for a priest at the close of business, though I hereby state while I am still lucid that the entity thus humiliating itself would not in fact be “me.” (Bear this in mind, in case of any later rumors or fabrications.)
On holding hope and realism:
The absorbing fact about being mortally sick is that you spend a good deal of time preparing yourself to die with some modicum of stoicism (and provision for loved ones), while being simultaneously and highly interested in the business of survival.On losing his voice:
Now, if I want to enter a conversation, I have to attract attention in some other way, and live with the awful fact that people are then listening “sympathetically.” At least they don’t have to pay attention for long: I can’t keep it up and anyway can’t stand to.On sharing stories about other people's cancer:
...your narrative may fail to grip if you haven’t taken any care to find out how well or badly your audience member is faring (or feeling).On a false cliche (What doesn't kill you makes you stronger.):
After all, if it were otherwise, then each attack, each stroke, each vile hiccup, each slime assault, would collectively build one up and strengthen resistance. And this is plainly absurd. So we are left with something quite unusual in the annals of unsentimental approaches to extinction: not the wish to die with dignity but the desire to have died.On pain:
It’s probably a merciful thing that pain is impossible to describe from memory. It’s also impossible to warn against. If my proton doctors had tried to tell me up front, they might perhaps have spoken of “grave discomfort” or perhaps of a burning sensation. I only know that nothing at all could have readied or steadied me for this thing that seemed to scorn painkillers and to attack me in my core.
Friday, December 16, 2011 by Christian Sinclair ·
Quick quiz: How many medications do you think are on the current drug shortage list? (Answer at the end of the post)
- Bedford discontinued lorazepam in May, 2011 to concentrate on the manufacturing of other products.
- West-Ward acquired Baxter’s lorazepam injection products in May, 2011. The company cannot provide a reason for the shortage.
- Hospira states lorazepam vials are on shortage due to increased demand. The 1 mL iSecure syringes were discontinued in September 2011.
by Christian Sinclair ·
Wednesday, November 23, 2011
For the past few years at Thanksgiving, Pallimed donates a blog post to Engage With Grace, a movement to encourage a new tradition of using the family time during this American fall tradition to get families talking about what is important to them. This is a movement you can easily get behind in person if you are an advocate for good patient centered health care, which you likely are if you are reading this blog. So donate your blog, Facebook update, Twitter account (#EWG) to Engage With Grace this holiday weekend. And then put your money where your mouth is and bring it up yourself while your family is together.
Seems almost more fitting than usual this year, the year of making change happen. 2011 gave us the Arab Spring, people on the ground using social media to organize a real political revolution. And now, love it or hate it - it's the Occupy Wall Street movement that's got people talking.
Smart people (like our good friend Susannah Fox) have made the point that unlike those political and economic movements, our mission isn't an issue we need to raise our fists about - it's an issue we have the luxury of being able to hold hands about.
It's a mission that's driven by all the personal stories we've heard of people who've seen their loved ones suffer unnecessarily at the end of their lives.
It's driven by that ripping-off-the-band-aid feeling of relief you get when you've finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they'd want for themselves, and knowing you could advocate for these wishes if your loved one weren't able to speak up for themselves.
And it's driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure you're all on the same page. In the words of the amazing Atul Gawande, you only die once! Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace!
Here are the five questions, read them, consider them, answer them (you can securely save your answers at the Engage with Grace site), share your answers with your loved ones. It doesn't matter what your answers are, it just matters that you know them for yourself, and for your loved ones. And they for you.
Coalition to Transform Advanced Care, or C-TAC, working together to channel so much of the extraordinary work that organizations are already doing to improve the quality of care for our country's sickest and most vulnerable.
Noted journalist Eleanor Clift gave an amazing talk, finding a way to weave humor and joy into her telling of the story she shared in this Health Affairs article. She elegantly sums up (as only she can) the reason that we have this blog rally every year:
For too many physicians, that conversation is hard to have, and families, too, are reluctant to initiate a discussion about what Mom or Dad might want until they're in a crisis, which isn't the best time to make these kinds of decisions. Ideally, that conversation should begin at the kitchen table with family members, rather than in a doctor's office.It's a conversation you need to have wherever and whenever you can, and the more people you can rope into it, the better! Make this conversation a part of your Thanksgiving weekend, there will be a right moment, you just might not realize how right it was until you begin the conversation.
This is a time to be inspired, informed - to tackle our challenges in real, substantive, and scalable ways. Participating in this blog rally is just one small, yet huge, way that we can each keep that fire burning in our bellies, long after the turkey dinner is gone.
Wishing you and yours a happy and healthy holiday season. Let's Engage with Grace together.
To learn more please go to www.engagewithgrace.org. This post was developed by Alexandra Drane and the Engage With Grace team.
Wednesday, November 23, 2011 by Christian Sinclair ·
Wednesday, November 16, 2011
In a July 24th article, A Better Kind of Care, The Boston Globe journalist Kathleen Burge introduced readers to Paul White, a successful owner of an engineering and manufacturing business, a man with a wife, two adult daughters, five granddaughters, and stage IV renal cell carcinoma. He had beat the odds repeatedly, having survived over seven years since the discovery of metastases. Despite availing himself of surgery, every new advancement in chemotherapy and participating in a clinical trial, his cancer was implacably progressing. Contemplating starting on what might be the last chemotherapeutic agent, he had also started seeing Dr. Vicki Jackson, Director of the Palliative Care Unit at Massachusetts General Hospital.
IMHO, the article did a terrific job of fleshing out the concerns, dilemmas, and ambivalence of patients, family members and healthcare providers in the uncertain, lurching and insidious territory of life-limiting/life-threatening illness and its treatments. It also did a great job of featuring and explaining palliative care, and its role upstream from hospice care. Here are the published letters to the editor on the story.
This morning I read in the Globe that Mr. White died on November 5th.
We have posted here before at the passing of patients with variously documented life-limiting/life-threatening illnesses, e.g., here, here and here. I thought I would respectfully post this retrospective with gratitude to the many patients who allow us to glimpse some of the most difficult situations in hopes of connecting to, and of helping, others.
Wednesday, November 16, 2011 by Brian McMichael, M.D. ·
Tuesday, November 15, 2011
The social news website Reddit advertises itself as the "Front Page of the Internet." The site might as well be called "Procrastination Grand Central" (based on my experience).
A lot of the stuff posted on the site is, well, junk... but there is enough good stuff to keep you occupied if you aren't not careful.
|by Eva B|
One of the "subreddits" on the site is entitled "IAMA," which doubles for "I am a" and "ask me anything." Several posts strike me as notable. For instance, see "IAmA terminally ill man with ALS, AMA" or "IAMA 20 something that supports his two disabled/terminally ill parents about to deal with his 2nd eviction. AMA."
The "subreddit" has a verification system which doesn't seem to be applied to every post. Veracity issues aside, it's curious to watch public interactions among (mostly anonymous) people attempting to grapple with these issues.
Of note, an anonymous Australian palliative care physician recently posted an "IAMA" which turned out to be fairly popular. Many excellent questions were asked, such as:
- "How do you deal with existentialist distress in your patients?"
- "What's your coping mechanism to deal with the amount of pain and death you see? Are the ones who get cured enough, or do you have another strategy? Are you religious?"
- "Are you afraid of dying? do you worry about getting a terminal illness and does that impact upon your life? what's your understanding of death? thanks a million."
- "I was diagnosed with stage 4 lung cancer about four months ago.......My question is when should I be looking at palliative care, if at all? What would it do to help me?"
This is yet another example of how social media can be used to educate the public, although it needs to be done carefully. For instance, the doctor was not transparent in the introduction about the fact that he or she is from Australia- this fact was buried in the comments in the thread of replies. While there are many commonalities in the practice of palliative care around the world, some practices are system-specific so one could see the potential for misunderstanding. The doctor does seem to mention this a few times when it may be relevant. And, as always, one should stay away from providing consultation regarding specific issues which may create a liability concern. (Consult your institution's social media policy if they have one.)
Furthermore, the physician's response to the last question listed above (when should I be looking at palliative care, if at all?) leaves much to be desired. The response starts out appropriately: "I think the best person to determine when you should be considering palliative care would be your main treating physician" but then unravels very quickly when the physician suggests that being "minimally responsive" to treatment would prompt consideration of a palliative care referral. We know by now that earlier palliative care consultation for this patient may be appropriate. I'd be interested in the Australian perspective on the NEJM study to help us understand if system differences change the relevance of the study.
Predictably, the poster with Stage IV lung cancer responds to the physician's comments, "Thank you for your response! Knowing when to seek out palliative care certainly helps! I hate to say it, but I'm going to do my best to never have to meet you in a professional setting!"
I've written an additional response to the question. If you have comments you wish to make, it takes about 10 seconds to sign up for an anonymous account (no email address required).
See some other relevant "IAMA"s:
Tuesday, November 15, 2011 by Lyle Fettig ·
Friday, November 11, 2011
The FDA has opened a comment period, closing December 7, on it's just-released draft "Blueprint for Prescriber Continuing Education Program." The accompanying request-for-comment states that "The central component of the Opioid REMS program is an education program for prescribers and patients." If you've missed the previous discussion of opioid REMS, see Drew's blogs here and here and especially Stew Leavitt's extensive analysis last April.
Friday, November 11, 2011 by Thomas Quinn, APRN ·
Tuesday, November 8, 2011
I started to blog about two new reports from the Institute of Medicine (IOM). Both relate to patient-centered care, a major area of interest for the IOM in the past decade. But then I got distracted by some headlines that seem somehow related: The first was a New York Times piece, "The Downside of Doctors Who Feel Your Pain." The article, written by a young physician who considers herself to be empathetic and likable, wonders aloud if the current emphasis on improving the doctor-patient relationship is just a fad. Furthermore, she wonders if the adage her father introduced to her, "competence is inversely proportional to how much patients like" the physician, might have some truth to it. Appropriately, she questions how one measures the impact of improved interpersonal skills in overall healthcare quality and cost. Of course, palliative care was a little ahead of the curve in emphasizing interpersonal skills. Billings & Block at Harvard; Tulsky's pioneering research; Back, Arnold, Tulsky & company's Oncotalk training; ELNEC and EPEC (and EPEC-O); and family meeting as a bedrock "procedure" of palliative care are all examples.
"The Virtual Nurse Will See You Now" and "Friending Your Doctor Online" are recent offerings in the online newspaper, Technology Review. I was surprised to read that patients found the virtual nurse, "Elizabeth," a computer simulation, was likeable and effective. Patients are reported to resonate with the empathic responses of Elizabeth and to respond well to her instructions and coaching. [I wonder how well she would get along with Siri?] A physician-prescribed social network designed by a startup called Wellaho is in clinical trials in San Diego. It differs from other health-related social networks by including clinicians and by being integrated with the electronic health record. Might this improve coordination across disciples and care sites? Could it reduce hospital readmissions through improved monitoring and communication?
Back to the IOM: Patient-Clinician Communication: Basic Principles and Expectations is the inaugural IOM Discussion Paper, a new IOM series. Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care is the report of a workshop (Feb 28 – Mar 1, 2011) jointly sponsored by the National Coalition for Cancer Survivorship and IOM. Both of these publications grew out of the IOM emphasis on patient-centered care that was highlighted in the 2001 consensus report, Crossing the Quality Chasm: A New Health System for the 21st Century. In that report patient-centeredness was identified as one of six key characteristics of quality care.
Patients are the “ultimate stakeholders” in an increasingly complex delivery system, often with poor coordination and unclear roles. “The effectiveness of patient-clinician communication can be as important as that of a diagnostic or treatment tool.” Basic principles of patient-clinician communication are enumerated: mutual respect, harmonized goals, a supportive environment, appropriate decision partners, the right information, transparency and full disclosure, and continuous learning. In cancer care the last point might be illustrated by the follow-up/reassessment visit before the next in a series of treatments, the transition visit between treatment modalities or at the end of treatment, or the reassessment following a family meeting or after introducing a treatment for a bothersome symptom.
"Patient-Clinician Communication" is short, pretty straightforward, and appropriate for use in an introductory education offering in improving communication skills. It is, after all, a discussion paper, and is likely to spark substantive discussion in classroom and workshop settings.
Applying these principles to cancer treatment planning is a challenge. 80% of cancer patients are treated in the community where fragmentation of services is inherent, but even academic medical centers are subject to communication hurdles (I know many of your are astounded to read that). The average cancer patient sees three specialists who may each be in a different location and has multiple treatments across time and space. Imaging and blood tests might also be in different locations. Each setting and even different departments within an institution may have documentation systems that don’t link with each other. Tumor Boards, designed to improve multidisciplinary care, may not insert their conclusions into the patient record and don’t include the patient in the discussion of treatment recommendations. Meanwhile, patients may access information from friends or the Internet that adds further complexity and confusion, despite the availability of high-quality Web sites. Many patients lose touch with their primary care practitioner during the acute treatment phase.
The major recommendations of the conference were that a shared decision-making model be used and that each patient be given a written treatment plan. Shared decision-making includes an active partnership between patient and physician in which shared treatment goals are agreed, risks and benefits of various alternatives are discussed, and the values and preferences of each are honored. A written treatment plan includes collaborative input from each discipline and specialty involved, incorporates patient preferences, and identifies the responsible clinician(s) for each phase of care. The treatment plan is organic and may need to be revised as the patient progresses through treatment. The treatment plan then becomes the basis for the treatment summary and survivorship care plan, documents advocated by a previous influential IOM report, From Cancer Patient to Cancer Survivor: Lost in Transition. A good summary of the treatment planning publication can be found in the Oct 10 issue of Oncology Times.
The cancer treatment planning conference did not limit itself to the acute treatment phase of care. It also covered advance care planning, survivorship planning, and planning care for advanced disease. Despite the splash made by Jennifer Temel's early palliative care study in late 2010, it was mentioned only once in this report, in the context of advanced care planning. Discussants included Tom Smith, Betty Ferrell, and others well-known to the palliative care community.
The cancer-planning document is not a peer-reviewed report, like "From Cancer Patient to Cancer Survivor." None-the-less, it is meaty and the discussants are all well-known and influential. I suspect (and hope) that it will become the basis for numerous discussions around the country about improving the process of treatment planning at all phases of cancer care.
[IOM products are available for purchase in hard copy, can be viewed free on the IOM web site, and many, including those mentioned here, can be downloaded in free in PDF format].
Tuesday, November 8, 2011 by Thomas Quinn, APRN ·
Friday, November 4, 2011
Is this a scenario which you have been encountered previously ?
I ran across a blog post the other day ("Palliative Care: The Pal for Every RA Patient") from an enthusiastic advocate for patients with rhematoid arthritis who suggested that palliative care might have a role in this type of patient.
Let's review some generally accepted "criteria" for "early" involvement of palliative care:
- Does the patient have a serious illness? No one can argue the fact that rheumatoid arthritis is very serious.
- Does the patient have a burden of symptoms? It certainly seems so. Check.
- Does the patient had significant psychosocial and spiritual concerns? Yes indeed.
The recent CAPC Public Opinion Survey suggested that we should say that we see patients who have "serious" illness rather than "advanced," "life-limiting," or "terminal" diseases (see Christian's post about the survey here). I have found this to be helpful as I describe our services to new patients/families. If we want to see patients at an appropriate point in their illness course, create appropriate demand amongst patients/families, and ensure they will embrace us from the start, then using "serious illness" does seem to be a more sensitive approach (for finding cases which may be appropriate for palliative care).
We'll likely never find an ideal 1-2 word adjective to describe the type of patients we think we can benefit most. Most of the terms above represent general statements regarding prognosis but still leave a lot for interpretation (eg when in the does one become "terminally ill"?) "Serious" tells you even less regarding prognosis- it's only a vague conception of how a patient or family perceives their illness. We need to accept that while "serious illness" is more sensitive than other terms , it probably isn't as specific. As we try to maximize the number of appropriate early referrals, we'll continue to be challenged to determine what our role is for patients as described above.
Intersections between palliative care and rheumatology do definitely exist, though. The author of the blog post does refer to a journal article which describes some cases where palliative care is most certainly appropriate. This article is worth a glance and I have encountered some similar issues in my clinical work.
Certainly I do not discourage this type of advocacy. I remember from my residency being exposed to several rheumatologists who practiced medicine using a biopsychosocial philosophy. I'm sure that many of them would welcome greater interdisciplinary involvement. Perhaps palliative care's greatest benefit for these patients would be more indirect than seeing every patient. System-wide educational and quality improvement palliative care initiatives may be where the value is for these patients.
How would you recommend that a palliative care team handle this type of request for an evaluation? Here are some possible options:
- I would schedule the patient for an appointment with a plan to provide a single evaluation, sending recommendations back to the rheumatologist and primary care physician.
- I would be open to the possibility of comanaging this patient over time alongside the patients rheumatologist and primary care physician.
- I would consider taking over this patient's primary care as the palliative care clinician.
- I would not schedule an evaluation of the patient.
- Outpatient palliative care clinic? We're barely keeping our heads above water seeing patients in the hospital!
Friday, November 4, 2011 by Lyle Fettig ·
Sunday, October 30, 2011
Helen Kao at Geripal recently wrote a thoughtful post which highlights some of the flaws in the California POLST form. It's worth a read and I agree with her comments. (And even though I use "POLST" here, I agree with her thoughts on using "POST" instead.)
For jurisdictions which are considering the establishment of POLST, it is important to consider the experience of other states as new forms are designed and legislation is drafted. I live in one of the many states which is in the process of developing a program. In spite of the weaknesses of forms currently in use in other places, PO(L)ST/MO(L)ST remains a very helpful tool with new research continuing to back its utility. For instance, consider a recent study published in the Journal of the American Geriatrics Society which demonstrated high consistency between treatments provided to nursing facility residents and orders recorded on POLST forms. The study found that overall, POLST orders were consistent with treatments provided 94% of the time. Consistency rates were especially high for resuscitation orders. Consistency rates were slightly lower for antibiotic use and much more modest for feeding tubes use.
Reasons for inconsistencies between orders and treatments should be evaluated further. It's unclear that improving the form itself would reduce these inconsistencies. Patients' preferences sometimes change and sometimes patients want their surrogate to have the leeway to change orders after the patient loses capacity (perhaps using a "best interest" standard of decision-making at that time rather than a pure "substituted judgment" standard).
I hope that my state will "get it right the first time" taking into account the experiences of others. However I know that it is impossible to get it completely right the first time. Therefore, I hope that any legislation approved will include a process for modification of the forms which does not require the wheel to be reinvented down the road.
Sunday, October 30, 2011 by Lyle Fettig ·
The illness and death of the iconic Steve Jobs have stimulated much conversation both online and off. I won't rehash that now.
In case you missed it, NYT published the eulogy delivered by Steve's sister, Mona Simpson, who is a novelist and English professor.
"One time when Steve had contracted a tenacious pneumonia his doctor forbid everything — even ice. We were in a standard I.C.U. unit. Steve, who generally disliked cutting in line or dropping his own name, confessed that this once, he’d like to be treated a little specially.
I told him: Steve, this is special treatment.
He leaned over to me, and said: “I want it to be a little more special.”
Intubated, when he couldn’t talk, he asked for a notepad. He sketched devices to hold an iPad in a hospital bed. He designed new fluid monitors and x-ray equipment. He redrew that not-quite-special-enough hospital unit. And every time his wife walked into the room, I watched his smile remake itself on his face.
For the really big, big things, you have to trust me, he wrote on his sketchpad. He looked up. You have to.
By that, he meant that we should disobey the doctors and give him a piece of ice."A remarkable blending of the mundane with the extraordinary. He put his two pant legs on and wanted his ice chips just like everyone else.
Oh, how I'd love to see those drawings.
The eulogy hints at how Jobs' illness and treatments interacted with his goals of care (which I'm guessing he was able to clearly define) and quality of life. Given the amount of discussion in our society which surrounded his illness and death, how special might it be to know how he went about making various decisions related to his health care? That could be a beautiful contribution to our society. There is no doubt that limitless financial resources played a role in the care which he received, but he wasn't in the ICU or even the hospital when he died.
"We all — in the end — die in medias res. In the middle of a story. Of many stories."
by Lyle Fettig ·
Friday, October 28, 2011
by Holly Yang, MD ·
Wednesday, October 19, 2011
|by john cowper|
JCO published a population-based snapshot that looks at the characteristics of patients with cancer who visited emergency departments in North Carolina during 2008. Lung cancer was the most common cancer identified in visits by a significant margin while breast, prostate, and colorectal cancer were each identifed in a smaller number of visits. Patients with lung cancer were more likely to be admitted to the hospital with a total of 63% of all ED visits for patients with cancer resulting in an admission. The top three complaints included pain, dyspnea, and gastrointestinal complaints. More ED visits occurred during night and weekend hours than regular office hours.
Few brief thoughts/questions to ponder:
- What percentage of the ED visits were preventable? What systems could be introduced to prevent the visits? (Urgent clinic availability, telemedicine, enhanced home health, etc)
- Would these system changes result in a more timely manner and would that result in reduced need for hospital admissions?
- As a palliative care clinician, it's not a surprise to see lung cancer disproportionately represented. One of the results of the Temel et al study regarding palliative care involvement from the time of metastatic NSCLC diagnosis was reduced hospital admissions/ED visits. It's not clear what the "mechanism of action" is, but improved access to a team that can help with the top symptoms certainly is one plausible hypothesis.
- What is the "right number" of appropriate ED visits/hospital admissions? Hard to say, but palliative care as a field should actively work to help our oncology colleagues to push the numbers as low as possible. As much as I like my ED colleagues, the ED is not a fun place to be.
Wednesday, October 19, 2011 by Lyle Fettig ·
"Patients are no longer patients, but rather “customers” or “consumers.” Doctors and nurses have been transmuted into “providers.” These descriptors have been widely adopted in the media, medical journals, and even on clinical rounds. Yet the terms are not synonymous. The word “patient” comes from patiens, meaning suffering or bearing an affliction. Doctor is derived from docere, meaning to teach, and nurse from nutrire, to nurture. These terms have been used for more than three centuries."The terms "providers" and "consumers" do strike me as "health care industry"-centered terms which have served to frame the discussion in a way that is favorable to said industry. Hopefully, the terms (especially "consumers") don't advance any further in the lexicon and maybe more feedback needs to be given to media sources regarding better terms to use.
"The words “consumer” and “provider” are reductionist; they ignore the essential psychological, spiritual, and humanistic dimensions of the relationship — the aspects that traditionally made medicine a “calling,” in which altruism overshadowed personal gain."
by Lyle Fettig ·
NEJM presents a case of a man found to have a primary lung cancer and a solitary brain metastasis. The discussion regarding management of the patient is noteworthy, especially the possible role of surgery and a brief discussion regarding the use of tyrosine kinase inhibitors.
The palliative care consultant should be aware of the available case series which suggest that a minority of patients might have a longer survival than what is usually expected in patients with brain mets. (See Table 1 in the article.) In the case series, patients received aggressive surgical intervention for the brain met and aggressive attempt at locoregional control of the primary cancer.
The article provides some guidance for selection of appropriate patients for aggressive disease-based management. No particular quality of life outcomes are mentioned related to aggressive surgical management.
The bottom line dilemma: This is a scenario where multidisciplinary/multimodality management may give a small number of patients a chance at longer term survival. The approach may be worthwhile to some, but talking about prognosis on multiple levels (survival, anticipated quality of life/burden of procedures) is essential. I cannot remember encountering this scenario recently, but a palliative care consult would be appropriate in any patient with Stage IV lung cancer. It's possible that the complexities of therapy and communication surrounding prognosis may only increase the usefulness of palliative care in this scenario.
by Lyle Fettig ·
The NPR show Tell Me More has a week long series on issues surrounding aging and end of life.
Today, the show highlighted the documentary Serving Life about care provided to inmates at Angola Penitentiary in Louisiana. The documentary aired this summer on the Oprah Winfrey Network.
Also, see this recent perspective piece from Annals of Internal Medicine which addresses the issue of compassionate release of prisoners near the end of life.
Pallimed has featured stories on palliative care in prisons previously (see search results for "prison" here).
by Lyle Fettig ·
Friday, September 30, 2011
by Lyle Fettig
The Journal of Clinical Oncology published a Swedish study which examines correlation between patients being informed of imminent death status and other palliative care quality outcome measures. In the study, 91% of patients were informed of their imminent death status. How was this measured? Sweden has a national palliative care registry which is described in the study text (click the little Union Jack at the top right of the page to view the front page in English) :
This online register was completed by the physician and/or nurse responsible for the patient's care during the last week of life, although HCPs were not aware of the research question of this study. The design of the SRPC Web questionnaire does not allow any missing data at submission. The Web questionnaire is based on the 11 principles constituting good death as defined by the British Geriatrics Society and was designed to be used in any care setting, independent of diagnosis, with the intent to look retrospectively at important aspects of care delivered during the last week of life. The 25 items on the SRPC include 14 questions that cover background data of patient and reporting unit and three questions that cover items not considered relevant to the aim of this study (ie, use of visual analog or numeric rating scales during last week of life, frequency of pressure ulcers, and staff reflection). The remaining eight questions covering, for example, degree of autonomy, information about imminent death, symptom control, parenteral as needed (ie, pro re nata or PRN) prescriptions, and preferred location at time of death, were included in the analysis in this study.The ACP Hospitalist Blog commented on this study in more detail right after the study was released. I'm going to keep my comments on the results brief. The bottom line was no surprise. Being informed of imminent death status correlated positively with more prn symptomatic medication orders, family being informed of imminent death status as well as being offered bereavement services, and patients recorded as dying in their preferred location. Being informed did not correlate with increased anxiety or pain. Minor methodological issues aside, this is yet more data (need we more?) to suggest that we should get over the worry about the effect of prognostic information on patients, even at the very end. When we don't sensitively explore patients' wishes for prognostic information and then give them info when they want it, it's usually because of our own discomfort rather than a protective effect for the patient.
What really strikes me about this study though is the existence of the database which made the study possible. Considering the fact that I would struggle to access many of these data at my own institution, it's amazing that Sweden has a national database and that over 13,000 subjects could be included in the study. Sweden is not unique in their attempt to measure various outcomes on a population level near the end of life. See this Canadian study looking at the trajectory of performance status and symptom scores in patients with cancer in the last six months of life.
Would something like this be possible in the United States? Could we develop a common repository for palliative care outcome measurement for individual patients? What are the true patient-centered outcomes which matter most to our patients and families when confronted with serious illness?
These questions don't exist in a vacuum and should be viewed within the context of the Accountable Care Act and evolving healthcare system. The Department of Health and Human Services recently released final rules for Accountable Care Organizations. The rules document describes 33 quality outcomes which ACO's will need to report in order to qualify for "shared savings" above and beyond Medicare Part A and B reimbursements (see page 324). In the first year of the program, merely reporting all 33 outcomes will be sufficient to qualify for the "shared savings" payments. In subsequent years, the ACO will need to meet a certain standard to qualify.
Take note of the first ten quality outcomes (all but the last three will be measured by patient survey data):
- Getting Timely Care, Appointments, and Information
- How Well Your Doctors Communicate
- Patients' Rating of Doctor
- Access to Specialists
- Health Promotion and Education
- Shared Decision Making
- Health Status/Functional Status
- Risk-Standardized, All Condition Readmission
- Ambulatory Sensitive Conditions Admissions: Chronic Obstructive Pulmonary Disease
- Ambulatory Sensitive Conditions Admissions: Congestive Heart Failure
While I'm rambling on about everything under the sun, the Swedish Palliative Care Registry has a second questionairre that is filled out yearly at a program level (rather than specific to individual patients). We do already have a registry similar to this: The CAPC National Palliative Care Registry. Your program should sign up for that, too, if it hasn't already.
Friday, September 30, 2011 by Lyle Fettig ·
Tuesday, September 13, 2011
by Holly Yang
On September 1st 2011, the Joint Commission started certifying hospital-based Palliative Care Programs! It is open to all Joint Commission accredited hospitals including long-term acute care care and children's hospitals. The standards for certification were based on the National Consensus Project's Clinical Practice Guidelines for Palliative Care and A National Framework and Preferred Practices for Palliative and Hospice Care Quality from the National Quality Forum. For previous comments on the importance of this see Christian's post from spring when it was announced.
It is "designed to recognize hospital inpatient programs that demonstrate exceptional patient and family-centered care in order to optimize the quality of life for patients with serious illness. Palliative care involves addressing physical, emotional, social and spiritual needs and facilitating patient autonomy, access to information and choice."
The full text is here, but some of the highlights of the requirements are (I'm paraphrasing, so please see the complete text for all the little words that make a big difference):
- 24/7 coverage - by phone on nights and weekends, with availability of someone to come in to see the patient if necessary, and "must be able to provide the same level of palliative care services during nights/weekends as during normal weekday hours."
- See patients - At least 10 in the past and at least one during the on-site review
- Use evidenced-based approach to guide care (and/or practice guidelines to deliver care using a standardized method)
- Have the ability to direct clinical management and coordinate care
- Have an IDT (interdisciplinary team) and follow an organized approach to deliver care
- QI - Improve performance by collecting performance measurement data over time (at least 4 months' worth). No specific tools, but should be "evidenced-based, relevant, valid and reliable"
Tuesday, September 13, 2011 by Holly Yang, MD ·
Monday, August 1, 2011
Eric Widera over at GeriPal posted in April about changes in the National Resident Matching Program (NRMP) timeline for medical subspecialty fellowships, and the implications for Hospice and Palliative Medicine (HPM) and Geriatrics.
So, I ask for and get extensions of the offers. I interview at the program close to my wife's family. When I meet with the program director, I'm told their decision about my cohort of applicants will likely be made after my other offer extensions are up. I also get what is probably a generic invitation to contact the program if I needed an early decision to clarify matters. So, back to the offering programs to update them and ask for more time, which they graciously grant. I then ask for, but did not get, an early decision, which means I was still in the running. So, I am being pulled now in at least three ways, with irons still in the fire.
Interviewing is expensive, especially on a resident's salary, and doing this all during residency, with long hours while taking care of patients and collateral responsibilities, and having to use vacation time is all very stressful. As this is all going on interview offers continue to trickle in. I begin to turn down interview offers, even canceling interviews I already have scheduled, thinking I am likely to take one of these positions. At the same time, I am anxious about eliminating interviews out here in the Wild, Wild West because something could go wrong and my birds in the bush could fly the coop, and the whole thing could come down like a house of cards leaving me in the cold, and empty-handed.
The last few days start ticking down. Out of the blue, I get a contingent offer from a program that is very strong clinically and highly academic, in a culturally vibrant town, not too terribly far away from my family. They are working on getting approval for another Accreditation Council for Graduate Medical Education (ACGME) slot, versus perhaps another candidate may turn down an offer they have already made. At this point I make criteria for being "drawn and quartered," now being pulled in four different directions. The opportunity costs mount!
The way it felt, both as it was happening and in retrospect, was something like an uncertain, perilous and epic quest. It reminded me of my favorite epic, The Odyssey. Odysseus was struggling to get home after many long years away, but one problem after another cropped up to thwart him: the whim and malice of gods and goddesses, the threats of monsters, the thrall of enchantments, the lure of comfortable captivities, the sirens' call, tempestuous storms and even more monsters. It is at this point that imagery from the Odyssey wells up: Odysseus caught between the gorging and belching vortex of Charybdis on the one hand and the rapacious heads and voracious mouths of Scylla on the other, with no way out but through.
By luck and craftiness Odysseus barely averts disaster again and again, and by holding to the course, he finally achieves his quest and arrives home, travel-weary, older, perhaps wiser… but also with an unnecessary case of PTSD. To reason that since the hero survives and achieves the quest, the arduous and circuitous course he was made to take is justified is, in my opinion, a rationalization.
In the end, I secured a position and I am very happy with my outcome. I am however very unhappy with the process. Thank goodness for the Electronic Resident Application System (ERAS) where one's application, CV, personal statement, letters of recommendation, are uploaded into the electronic ERAS cloud once, and then are electronically submitted to one's desired programs (except for the programs that don't participate in ERAS and require old-fashioned paper applications, thus duplicating work for interested applicants and their recommenders). Having ERAS in place prevented the process from being even more labor-intensive and chaotic.
The diversity among programs in their respective timelines for application review, interviewing, and how and when to do what about making offers is frankly stunning. My process was cut short by a spoils-to-the-swift ethic. Because of the asynchronous timelines, I had to decline interview offers from programs I was very interested in. Given the inherent power disparity in the roles and the dynamics involved, I did not believe I had the latitude to walk away from offers from great programs in order to "explore my options" further. Perhaps my issue, but I doubt mine alone.
If there wasn't already an existing, simple, validated, large-scale, low-cost system to regulate and standardize behavior and decision-making among applicants and programs then one would be pragmatically stuck with the status quo. Luckily for us the kinks and bugs have already been worked out and a process is readily available for us to plug into. I'm speaking of course of the NRMP, or more simply "the Match."
Having been through an NRMP Match, and now this Matchless Meet Market, I find the latter is wholly unsavory and unsatisfactory. Rather than feeling like I've come through a fair process conducted on an even playing field to arrive at an optimized placement to advance my learning and professional development and to staff the houses of programs with the best they can attract, instead I feel like I just bought a house in today's market; I've closed the best deal I could, but I really would not want to do that over again.
Furthermore, I believe I was extremely lucky; my timelines were generous and fluid. I just think about those souls out there who are waiting for an interview in their preferred program, near their family, but get an acceptance from another program with a one week deadline to accept the offer (not an uncommon demand). Yes, I feel lucky for how it turned out in the end, but I also feel like I've been through the wringer unnecessarily, and I resent that.
My conclusion is that for the sake of learners (and I actually believe in the interests of most programs) HPM needs to align with the leaders in GME and participate in The Match on the same timeline as the other medical specialties. Incidentally, moving the process into applicants' final year of specialty training would bring it in line with the fellowship application process in other specialties, at least with Physical Medicine & Rehabilitation and Emergency Medicine.
If you have a war story, please feel free to add it. I would suggest de-identifying the data for the sake of human subjects protection, if you get my drift.
[Ed. Note: In the vast palliative care social media echo chamber, Eric Widera over at the GeriPal has provided the 2 to a 1-2 post combination on the problems of applicant/learners in the current state-of-the-fellowships. Please be sure to pop on over and check it out. - McMichael
And after you read that, you can see Christian Sinclair's alternate take on the Geripal post. - Sinclair]
Monday, August 1, 2011 by Brian McMichael, M.D. ·
Monday, July 25, 2011
If you are a med ed geek like me, you L-O-V-E the Interactive Educational Exchange which has been a fun and exciting part of the Americal Academy of Hospice and Palliative Medicine (AAHPM) Annual Assembly for the past two years. It's not your ordinary concurrent session. No! Instead, you listen to a quick overview of the different presentations and then you zip around to learn more about the ones that you find most intriguing. I have always come away with at least one interesting idea to try or tweek to fit my teaching style and audience. So... if you're students are yawning, you can A) buy them coffee or B) go to the Interactive Educational Exchange on March 9th, 2012 from 3:30 to 5:00 pm.
If you've got an exciting way to teach palliative medicine to any discipline, please do share! Submit it for the 2012 Interactive Educational Exchange at the AAHPM Annual Assembly in Denver! Hurry! Submissions are due by 5 pm PST August 2, 2011! Heck! They make it easy by even giving you previous year's submission examples.
Hope to see you there!!!
|Photo by Elizabeth Thomsen via Flickr|
Monday, July 25, 2011 by Holly Yang, MD ·
Tuesday, July 19, 2011
I've been following the emergence of denosumab as a preventive therapy for skeletal related events in patients with bone metastases, and thought I'd write about it. Denosumab is a monoclonal antibody therapy which binds RANK-ligand, leading to osteoclast inhibition, decreased bone turnover, and presumably its salutary effects in preventing fractures and other skeletal related events (this glowing editorial on denosumab gives a nice/brief overview of its mechanism of action - the image is from this editorial.)
There have been several publications the last half-year in Journal of Clinical Oncology (breast cancer study here; myeloma & non-breast, non-prostate cancer study here) all showing that denosumab is non-inferior to zoledronic acid in preventing skeletal related events. (SREs are a composite research outcome which combines pathologic fracture, hypercalcemia, and need for surgery/radiotherapy due to bone mets.) I'd noted the abstracts, and already seen a few patients receiving it, but finally gave the research a closer look the last couple weeks.
What struck me, as I read the paper for the myeloma/non-breast/prostate one, was their power calculation: they calculated needing 1700 patients to demonstrate noninferiority of denosumab to zoledronic acid given monthly. That's a pretty high number for a supportive cancer trial, I thought to myself, Why? Well the answer is obvious, and borne out by the study results. The benefits of denosumab, compared to zoledronic acid, are marginal, and you'd need a lot of patients to minimally prove statistical significance: denosumab met their non-inferiority definition; the median time to first on-study SRE was 20.6 months for denosumab vs 16.3 months for zoledronic acid (this difference did not achieve statistical significance). There was some expected differences in side effects: more flu-like symptoms and renal problems with zoledronic acid, some more hypocalcemia with denosumab. That's about it. The breast cancer study had similar findings, a little more positive (by 27 months 50% of patients in the zoledronic acid group had had an SRE whereas only 40% of of the denosumab group had - this met their superiority criteria). The paper doesn't present its data in a way that allows one to calculate this exactly, but by eye-balling a figure (2a) my conclusion is that the number needed to treat to prevent 1 SRE over 27 months is 10 (you'd have to give denosumab to 10 patients to further prevent a single SRE over 27 months compared to what you would have prevented with zoledronic acid).
This is a modest enough improvement that the investigators needed 2000 patients in the breast cancer study to demonstrate it actually is, and not noise. I want to be clear: I think the research supports that denosumab is as good as zoledronic acid, and for breast cancer patients it is better. I don't doubt that. That's what the N of 2000 showed. The issue is, as a clinician, I have become more and more inclined over the years to think that the bigger N you need to show something, chances are that something is of a magnitude that is small enough, or of a frequency that is rare enough, that it's an intervention that is likely to help any given patient in theory only. The 'better' of denosumab is probably barely worth it, at least for most patients (it may be worth it for patients with significant chronic kidney disease, but that's it).
Part of this is then re-learning what was beaten into me when I was younger, which is that bigger trials are better. They probably are better if the outcome you're interested in is a small improvement, or rare event (and there are some outcomes for which that's appropriate - stroke prevention, for instance), but if the outcome you're interested in is anything else, including symptom control, you want something better than a small, barely statistically demonstrable, improvement.
Another way of looking at this are the costs involved. I tried finding out more about this, and found a couple cost-effectiveness analyses (here, here - both from 2011 ASCO), dishearteningly brought to us by Novartis, the maker of zoledronic acid. Yep. You can see Amgen (the maker of denosumab, and palifermin) & Novartis glowering at each other across the aisle at the poster session of ASCO. Both suggest that denosumab costs an additional $640,000 dollars per quality-adjust life year gained in breast cancer. More for prostate cancer. Denosumab's acquisition cost is $1650/dose vs $887/dose for zoledronic acid. Ignoring arguments about QALYs (I'm not the biggest fan either), the magnitude of the dollar figure here gives you some sense of how marginal the improvement denosumab is bringing. One wonders about all the ways one could use that money to help our patients in ways that will be actually helpful to them.
Which brings me to palifermin to prevent oral mucositis. A recent JCO published the results of two (related, and Amgen funded, and randomized, double-blinded, placebo controlled) trials of weekly palifermin times 7 doses during definitive radiochemotherapy for head and neck cancer: here & here. Palifermin is a recombinant human keratinocyte growth factor, and is approved for the prevention of oral mucositis for patients undergoing stem cell transplants. Revisiting my prior discussions, both studies estimated they needed ~200 patients to be adequately powered to demonstrate superiority of palifermin over placebo in preventing the incidence of severe oral mucositis (200 patients - now that's a study which is probably measuring something!).. Rates of severe OM were reduced by ~15% (absolute risk reduction - NNT of 6.7). Secondary outcomes suggested a (dramatic but apparently non-statistically significant) trend in one study and a statistically significant reduction in the other of duration of severe OM by two weeks. Acknowledging that that's a sort of 'wow' outcome that gets one excited, I have to remind myself it was a secondary outcome. Going through definitive radiochemotherapy for head and neck cancer has got to be one of the harshest medical interventions around, and reducing the most severe OM by a couple weeks seems huge. Notably, however, they didn't look at health related quality of life, and one wonders if this was a missed opportunity. I've tried to identify cost effectiveness analyses for palifermin, but haven't found any for radiochemotherapy. The stem-cell transplant literature suggests it's cost effective in that setting.
Tuesday, July 19, 2011 by Drew Rosielle MD ·