In my first year as attending physician in a large homecare-based hospice, I have encountered many personal and professional struggles. The biggest of these for me has been that of accountability. Having trained in a tertiary care center where most everyone comes through the emergency department, there is information galore on each palliative care and hospice patient. Recent scans, labs, consults, and evaluations are all in one glorious EHR. With one passcode entry, I have every piece of information I need to make smart, informed decisions with just about any patient. The physical exam mattered little when I could tell Mr. Smith with certainty that his CT showed a mass. I long for those days.
With my home-based hospice patients, I have some information in most cases, but in all cases it is fragmented. Patients see their PMD on occasion, but see the GI specialist for their bowel troubles, and the cancer center across town for their neoplasm. They all use a different EHR, if they use one at all. In my office, I get facsimile copies of a truncated recent history; hyperlipidemia management notes from primary care, colonoscopy notes from GI, and hand-written nursing notes from the last hospitalization, none of which add up to the complete picture of whom my patient is today. As an aside, I am sometimes taken back to my residency days when I would hold the chart at arms’ length and squint my eyes to make out a lazy physicians’ hand-written consult note. These days, if I’m really interested in what the note says, I sometimes concentrate as if it were one of those 3D “Magic Eye” pictures that suddenly appears if you do it right. Rarely do I have that kind of time (or patience) anymore. Occasionally, I’ll get a patient who hasn’t seen a doctor in decades but who is obviously dying. What they are dying of is unfortunately anybody’s guess.
Hospice patients present tougher challenges than the inpatient or recently discharged. The hospice patient with biopsy-proven cancer who follows a normal end-of-life trajectory is thankfully, the norm. There is a subset of hospice patients however, who come into program with a life-limiting illness that follow an unusual trajectory. Mrs. Smith, for instance, came onto hospice with COPD, but with the question of a lung mass that was tentatively identified on CT. Mrs. Smith refused bronchoscopy or biopsy and did not wish to talk about what may be a cancer. Three months after I received Mrs. Smith on hospice, she became paranoid and confused. Unfortunately, this lasted for several months, which, in retrospect, speaks for itself. There were oddities along the way; urinary retention, rectovaginal fistula, VRE; all in the setting of normal lab values and a patient who didn’t want to know more.
As we all know, there is a lot of financial pressure that comes with being a hospice provider. There are no CT scans in home hospice. It can be difficult to put together a reasonable story that ties all the symptoms together when they just don’t make sense. It is even harder to look a family in the eyes and say, “I have no idea what’s going on.” I’ve found that the bridge to this particular gap is accountability. I may not have the answers, but I want to be there with each new development to tell them so.
As doctors, we are supposed to have all of the answers. In truth, the fact that I often don’t can weigh on me personally.
As HPM providers, we are the few who walk with patients and families through the unknown. We put pressure on ourselves as a specialty to be the providers who can ameliorate most of what ails you. Sometimes it feels as if this pressure can be too heavy for my young shoulders. I can’t always fix it. I don’t always have the answers. But I vow to be there to tell you that myself.
Bethany C. Calkins, MD