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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.

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.)

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Image credit: Wikipedia

Christopher Hitchens, noted author and philosopher died December 15, 2011 leaving behind many essays, books, and other writings as well as contributing to several lectures, ethics/religion debates, and TV talk shows.  His acerbic style often ruffled feathers as he attacked religious dogmatism.

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.

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There was a time when I heard about chemo shortages, and I thought that must really force some tough choices for patients and physicians.  But thankfully (I thought) drug shortages for generic non cutting edge medications that have been around for a long time like the ones commonly used for symptom control would probably be relatively immune.

• 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.

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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.

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(Essdras M Suarez/Globe Staff)

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.

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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?"

Several people didn't ask questions but merely thanked the physician for his or her work.

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:

• Hospice nurse
• Hospice nurses aide

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?

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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.

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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].

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by  adaphobic

A 50 -year-old woman calls the palliative care office requesting an outpatient evaluation. She says that she was diagnosed with rheumatoid arthritis approximately one year ago. She has gained benefit from initiation of disease modifying anti-rheumatic drugs yet she is still left with residual pain that has caused her to cut back on her work schedule. She reports over the phone that she has stopped going to church because she has a hard time sitting through long early morning church services and she's also developed depression. She read about palliative care on a website and decided to give the clinic a call to request an evaluation.

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.

I think it is flattering that palliative care would be considered an option in this type of scenario. It means that our field's message is truly getting across to a wider audience and that our philosophy is resonating with that audience.  The biopsychosocial model which underpins palliative care also applies very well to care of patients with rheumatoid arthritis.  If an expert palliative care inter-disciplinary team is to see patients as described above, though, we are going to need to bring our sleeping bags into work.

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.