On not feeling our patients' pain and some briefies...
1)
Christian's last post mentions the Academic Medicine article about fading empathy in medical students which has received a decent amount of press in the last week or so (free full-text of the article here) & I wanted to comment further. The study, despite its limitations (single institution, uses a single questionnaire-type instrument to measure empathy) is almost certainly measuring a universal and real phenomenon - loss of medical student empathy during the four years of medical school (one would love to see these students tracked over 3-6 years of residency training as well), with better preservation of empathy in those going into 'core' specialties like family & internal medicine. The commentaries about the paper have mostly decried the fact that empathy is beaten out of students during their training and wondered how this can be improved. The article itself, in its discussion section, has a really good discussion of the all-powerful 'informal curriculum.'
I want to make a somewhat contrarian position on this paper however: that learning how to attenuate one's own visceral empathy is in fact an important and adaptive part of becoming a physician. (Warning: I'm not an empathy researcher or expert, and am taking at face value the paper's own presentation of what they meant by empathy and what their instrument was measuring - if I'm wrong please shoot me down in the comments!) This study measured what they called 'vicarious' empathy:
Sociologists and psychologists have divided the concept of empathy into two main definitions or types: vicarious and imaginative. Vicarious empathy is an individual's vicarious emotional response to perceived emotional experiences of others and imaginative empathy is an individual's ability to imaginatively take the role of another so as to understand and accurately predict that person's thoughts, feelings and actions. The first definition reflects an innate emotional response, that is, a gut reaction, and is equivalent to the empathic concern described by Davis; the second definition refers to cognitive empathy and reflects a learned ability to imagine and intellectualize.
They also note in their introduction that the data have been conflicting about whether imaginative empathy attenuates during medical training. My argument is that 'imaginative' empathy is what is necessary for compassionate, patient-centered care, and that vicarious empathy is not. If I went around feeling viscerally all or even most of my patients' emotions, I'd be a wreck. In fact I constantly guard myself against feeling, 'in my gut,' my patients' emotions - it is an easy thing for me (and probably for many of us in this field) to do and I would be constantly overwhelmed if I did. This is a very different phenomenon from being aware of my patients' emotions, aware of how they affect them and their decisions, of how it needs to affect the way I and other clinicians interact and speak with them, of the 'room' those emotions may need, etc. This is a critically important bedside skill for all clinicians, but it doesn't require us taking on our patients' feelings, and one could argue vicarious empathy could potentially inhibit sound decision making and an attentive 'bedside presence' that people need in times of distress. None of this is to detract from the reality that I think there is a crisis in empathetic, patient-centered care in medicine - I worry however that this study is mis-identifying the crisis.
I'm particularly interested in this from a palliative care training standpoint and the fact that a key part of training PC clinicians should be to understand the difference between the two, and the fact that it is possible and at times advisable to 'fake' empathy at the bedside without 'feeling' it, and that a compassionate bedside presence is a learnable skill which doesn't require you to be
emotional.
2)
A couple from
Cancer....First is a look at bereaved family members'
perspectives on end of life care, with a focus on advance care planning. The (deceased) patients were involved in a palliative/supportive care program relatively early on in their disease, and had relatively high rates of advance directive/living will completion (~80%). What I found most notable was that the family members perceived that completing an AD actually impacted patient care in about half the cases (mostly for the good). This strikes me as high, and certainly other research has found no impact of AD's on care, and one wonders if the presence of an AD impacted the family members' perception of care...improved their perception of the quality of care in some way....?
The other one is about
prognosis in stem cell transplantation, and compares a comorbidity index (HCT-CI) with the Karnofsky performance status scale - this is a relatively technical study and I'm including it mostly for the prognosis completists amongst our readership. It is a retrospective review of prospectively gathered data in ~400 patients who underwent allogeneic SCTs. Essentially they found that the HCT-CI was a better predictor of mortality and toxicity than the KPS, and they developed an index which combined both measures (patients with the highest risk on this index had a ~70% mortality at two years, 50% mortality was at ~9 months).
3)
A couple for the teaching file:
American Family Physician has published guidelines for patient-centered communication at the end of life (
free full-text here). It's a practical overview of approaching breaking bad news, discussing prognosis, care transitions, etc.
Chest has a discussion piece exploring the
competencies pulmonary/ICU docs need to provide appropriate terminal care. It's mostly an overview of death in the ICU & contains a thorough and valuable literature review on the subject.
4)
JCO has a study looking at
patient's preferences for supportive cancer care. The study involved 300 patients who were receiving chemo or radiotherapy (mean age 58 years, the vast majority had an ECOG performance status of 0-2) whose referring oncologists believed that they would likely die within 6 months without antineoplastic treatment (actual 6 month mortality was 15%). They were asked to rate the importance/helpfulness of various services to them - some of these services are part of the hospice benefit (e.g. chaplaincy, visiting nurse, home health aide, respite care, etc.) and some were not (specifically these were: "a nurse case manager, a voucher that would
allow patients to purchase home care services from a family
member or neighbor, a meal delivery program, transportation
to medical appointments, care for dependents (children and adult
parents), and peer support"). (The nurse case manager caught my eye - most hospices I work with use a nurse case manager model for their hospice care - perhaps however this is not mandated by the Medicare hospice benefit?)
They found that all of the non-hospice services were rated higher than the hospice ones; even for patients with ECOGs higher than 2, for those who died within 6 months, and even for those patients who said they wouldn't want (but yet were receiving!) non-curative chemotherapy. The authors' summary:
There is a growing recognition that patients with advanced cancer have substantial needs for supportive care. Because approximately half of patients enroll in hospice the last 3 weeks of life, and one third enroll in the last week, their needs for supportive care must be met in other ways. Open access hospice programs and bridge programs offer an innovative way to provide supportive care services to these patients. However, these results suggest that the package of services that such programs offer—some combination of a visiting nurse, home health aide, chaplain, respite care, and bereavement counselor—may not be ideally suited for patients who wish to continue receiving treatment. Instead, these patients may prefer to receive other supportive care services, such as peer counseling, transportation, family care, and case management. Even those patients who do not wish to continue receiving treatment seem to prefer alternative services. Therefore, the hospice industry should reevaluate the services that it provides in open-access or bridge programs as well as hospice programs and should consider offering services that are not part of the Medicare Hospice Benefit.
My own take on this is not that open-access or 'bridge' programs are missing the boat, it's that in fact the home hospice model itself (as defined by the Medicare Hospice Benefit) doesn't work well for many patients outside of the final stages (home-bound, no interest in or indication for further trips to the clinic/hospital, etc.) and who don't have strong family/friend support. There are holes, so to speak, and this research does a good job of identifying how important they are to patients. Hospices (mostly) are well aware of these holes too in my experience, and struggle with work-arounds. What's interesting too is how many of these things patients said they wanted were practical/day-to-day things - transport, financial support for family caregivers, meals, etc. One aspect of hospice care that they didn't ask patients about (and one that I mention a lot to patients who are otherwise 'appropriate' for hospice care but are struggling with the decision...accepting the 'H' word) is the availability of help 24/7 for urgent symptom/medical problems - the idea that a nurse will come out at 3am to assess them and that they don't have to wade through a tortuous clinic triage system is quite appealing (perhaps this, like the nurse case manager, is not stipuated in the MHB?).
