Serious vs. Chronic vs. Life-limiting vs. Advanced vs. Terminal

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.