Monday, January 16, 2012
I have a 1 in 542 chance of dying in the next year. In other words, for every 542 men who are the same age as me, one will die in 2012. For those of us who survive until 2017, the probability of death during that year will be 1 in 364. This probability will increase fairly predictably over the years. Gompertz Law of human mortality suggests that the rate doubles every eight years. Supposedly, this law stands the test of time and across populations.
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| Source: Meandering Through Mathematics |
And if you live long enough, you'll likely develop a chronic disease. People are remarkably resilient and can adjust, so don't worry about this too much. With illness, you'll likely develop a greater awareness of your own mortality. Hopefully, you've prepared. If not, it's never too late.
But you'll go to your doctor with the expectation that he'll help improve your quality of life in the face of the chronic disease and also that he'll know what to do to help you avoid death. You've seen the ads on TV for such and such a pill which will improve your vigor. You'll look ten years younger than the average person with your condition, be able to win the stuffed animal for your grandkid, and the lights will go off in your bedroom a full 30-45 minutes before you plan on going to sleep. You imagine it to be so perfect that if a life-threatening condition arises and your doctor doesn't have a pill to fix the problem, you'll think, "This is the year 20XX, why don't they have a pill for this?"
This is the generic frame for the typical clinic visit for patients in the early 21st century. You know that doctors can't fix everything. Your doctor knows she can't fix everything. Both facts frequently go unspoken between the four walls of the clinic room as both sides labor to prevent a "premature" death. It's a noble and worthy goal but Gompertz Law remains. It occasionally crosses your mind: What would it be like to get sick, what type of interventions will you have to go through, what will happen if you become ill and don't have enough support to remain at home? It's crossed your doctor's mind, too. She's seen others go through it, but it's easier to talk about A1C's, LDL's, and holiday plans so concerns go unspoken. Advance care planning in the office remains challenging for multiple reasons, but the frame of the visit does not easily permit acknowledgement of death or other difficult outcomes.
It's always appropriate to prepare for multiple scenarios. Explicit discussion of prognosis, while not an absolute prerequisite, can serve as an entree to discuss the possible scenarios. The healthy young man looks at his probability of death and buys life insurance but prepares at the same time for life as a 50, 60, and 70 year old. In old age, it's still appropriate to prepare for multiple scenarios. If you are an 80 year old with a Mazzaglia Index score is 3, then you have an 8% chance of dying in the next 15 months and a 30% risk of being hospitalized, it makes sense to do some preparation for those events. However, you also have a 92% chance of NOT dying in the next 15 months. What then? What will it take for you to age in place? What happens if frailty or other circumstances make this impossible? Prepare for the most likely and worst case scenarios. It should be your expectation that your healthcare team can help you prepare.
In the JAMA article, the authors suggest using the indices to guide discussions about preventative care (such as whether to pursue a screening colonoscopy in a woman with advanced COPD and comorbidities). This use of the indices makes sense. Colonoscopy, while generally safe, is not without risk of complications, especially in older adults with comorbidities. It's appropriate for physicians to use the indices along with their clinical judgment to guide their recommendations. This has brought about accusations of bedside rationing, which is really a separate discussion. Medicare covers screening colonoscopy once every ten years. I wouldn't anticipate physicians refusing to order a colonoscopy for a non-terminally ill elderly patient based on a prognostic score.
It remains to be seen whether ePrognosis will increase awareness of prognosis in non-terminal, older adults or whether this will impact clinical decisions. I think it will. Time will tell.
(See also this recent NEJM perspective piece and related Geripal commentary.)
Monday, January 16, 2012 by Lyle Fettig, MD · 0
Monday, January 2, 2012
The Alignment of HPM and Oncology: Palliative Care Influence on Chemotherapy Use in Metastatic NSCLC
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| "Aikido" from Wikimedia Commons |
Last week, the Journal of Clinical Oncology released a secondary analysis of the data from the initial NEJM study data which further elucidates the differences in chemotherapy utilization between the palliative care and standard groups to try to help answer some of these questions. The authors also reexamined healthcare utilization at the end of life. Here are some bottom lines. The palliative care wing did not appear to receive more chemotherapy. The two groups did not differ with respect to initial anti-cancer therapy (and only one patient…in the standard care wing, incidentally.... didn’t receive anti-cancer therapy at the onset of the trial). They examined the use of multiple lines of chemotherapy (first, second, third, fourth, and beyond). Once again, there was no difference between the groups nor was there any difference in how much time it took for the groups to arrive at the next line of chemo.
How did the two groups differ, then?
- Days between last IV chemotherapy dose until death (Palliative care group median 64 days vs. Standard Care median 40 days, p=.02). For oral chemo, the results were 27 days and 17 days respectively but this was not statistically significant.
- Chemotherapy use in last 60 days of life (Palliative care group 52.5% vs. 70% in the Standard Care group, p=0.05). A trend towards less chemo use in last 30 and last 14 days of life as well but not statistically significant.
- Hospice utilization: While there was no difference between groups with respect to the percentage of patients utilizing hospice, the palliative care group received hospice services longer (median of 24 days vs. 9.5 days in the standard care group). In the palliative care group, 60% of patients received hospice >7 days before death compared to 33% in the standard care group. (More on this below.)
It should be noted that the study was not powered to look at many of these outcomes such as chemo use in the last month and 14 days of life as well as location of death. For instance, with a larger sample size, it’s possible that the increased incidence of home death in the palliative care group might have risen to statistical significance. However, the lack of statistically significant difference here is not surprising. While hospital based palliative care can prepare patients/families for the challenges which may come near the end of life, the provision of adequate care within the home to ensure a peaceful death involves many factors which may be outside the purview of the intervention described in the study (e.g. the development of unpredictable symptoms which are difficult to manage at home, capability of caregivers, capacity of the home hospice, etc).
While we are talking about the study being underpowered, I do have to point out that there was a statistically insignificant trend towards the palliative care group having a longer time from first to second line and from second to third line chemo (0.8 months longer in each case). This result came about only when participants were censored at time of analysis--when the numbers were crunched censoring participants at either date of death or date of analysis, there was no difference between groups in time to next line of chemo. I'm not sure which method is better for detecting a difference between groups, but this does suggest that with greater power, the study might have detected a statistically significant difference. In other words, we still can't rule out the possibility that palliative care helped patients receive more chemo early on in the course of their cancer therapy.
It was never my hypothesis that palliative care helped patients receive more chemo, thus resulting in the survival advantage. I've always thought that the benefits of excellent symptom/psychosocial support and avoidance of chemo near the end of life were more plausible explanations. Don’t confuse this with a bias against chemotherapy for patients with advanced lung cancer. I fully embrace the role for chemotherapy in advanced lung cancer and the palliative care practitioners in this study were obviously not chemotherapy obstructionists. I am familiar enough with oncology clinical trials (without being an oncologist) to know they lend more guidance to oncologists regarding when to start the agents and less guidance regarding when to stop. While sometimes the decision to stop is clear cut (patient has catastrophic complication or documented progression of disease on imaging with performance status slipping to ECOG 3), there are other times when the decision is more arbitrary.
One of the most frequently noted caveats to this study is the fact that it's a single institution. Other institutions vary with respect to patient population, oncology practice, and palliative care team practice. The palliative care intervention brought the median hospice length of stay just above the national median (21.1 days in 2009) and 60% of the palliative care patients received hospice >7 days which is below the national rate of 65%. (Source: NHPCO Facts and Figures). It's worth remembering that the palliative care intervention followed guidelines from the National Consensus Project for Quality Palliative Care. Adherence to those guidelines at other institutions should also mean that patients will see many of the same benefits even if the results of Temel et al and the present study couldn't be exactly replicated.
The QOPI measures are worth reviewing. As palliative care programs track metrics and achieve TJC certification, it's only natural that we should work with our oncology colleagues to help with the end of life QOPI metrics as well. The results of this study indicate that our work helps oncologists with those measures.“With accumulating evidence for the benefits of earlier referral to hospice for patients with terminal cancer, leaders in oncology have established guidelines for quality end-of-life care. The American Society of Clinical Oncology Quality Oncology Practice Initiative has delineated several key metrics for determining high-quality treatment near death, such as no chemotherapy within the last 2 weeks of life, referral to hospice, and enrollment in hospice care more than 1 week before death. Palliative care clinicians, who are accustomed to practicing within a multidisciplinary team, are ideally suited to support oncology providers, patients, and families in discussing and planning for such treatment at the end of life. To date, to our knowledge, no studies have shown the utility of these services for altering the quality of end-of-life care.”
Lastly, a friendly editorial which accompanies the study is also worth a read.
Monday, January 2, 2012 by Lyle Fettig, MD · 0
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 · 0
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 · 0
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.
We all know the power of a group that decides to assemble. In fact, we recently spent an amazing couple days with the members of the 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 · 0
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. · 0
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.
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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:
What do you think of this use of social media? Should the hospice palliative care community actively monitor sites like this for opportunities to educate?
Tuesday, November 15, 2011 by Lyle Fettig, MD · 1
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.
ed when first announced. The education Blueprint is pretty benign and pretty much (what should be) standard of care for almost any medication: the prescriber should know about the medications' potential negative effects, take them into consideration in prescribing and in teaching/counseling patients, and systematically monitor effects. Naturally, there is a fair amount about managing the risk of intentional misuse. The content outline provided by FDA to educational providers states that education must include information on: (1) weighing the risks & benefits of opioid therapy; (2) choosing patients appropriately; (3) managing and monitoring patients; (4) counseling patients on the safe use of these drugs; (5) information on how to recognize evidence of or the potential for opioid misuse, abuse, and addiction.Friday, November 11, 2011 by Thomas Quinn, APRN, CHPN · 0
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, CHPN · 0
Friday, November 4, 2011
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by adaphobic |
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!
- Other.
Friday, November 4, 2011 by Lyle Fettig, MD · 0









