Friday, March 20, 2009
JAMA has published two Perspectives on Care at the Close of Life pieces in the last few weeks. A young pregnant woman develops a fatal cancer and dies before her daughter reaches her first birthday. Her partner cannot bear the thought of her dying. The suffering experienced by this patient, her partner, and the health care team suffuses all of the care providers' descriptions of this case. The deep sadness here is universal. What is also clear is the profound influence of culture and immigration on this young woman's experience at the end of her life and on that of her partner.
The first is a review on palliative care for Latinos. With all due respect to the consistently excellent PCCL series I have to say this has been my favorite, perhaps for the simple reason that my own content-knowledge in this area is lower relative to the other ones. (This is despite doing my medicine training in Denver - I did not however learn about aspects of care particularly relevant to death and dying). Perhaps also because it is contains such well-written prose:
The paper discusses important cultural norms/narratives such as familismo, fatalismo; barriers to care from language/interpretation (this is one of the best, short, practical discussions of using medical interpreters I've seen anywhere), and issues regarding religion and immigration status. This is now at the top of my teaching pile for cultural issues.
The second is about self-care for physicians caring for dying patients. It focuses on burn-out and compassion fatigue, but also devotes a large amount of space for positive coping/responses to workplace stress, grief, and loss, and on the 'best-practices' of clinicians who thrive/endure in stressful environments full of loss.
The physician who formed the case for the piece made a comment which I really appreciated:
'The stuff that burns me out has nothing to do with loss. . . . It's fighting insurance companies . . .'I think many who don't do palliative care assume the major stressor is the death/loss - for me and most that I've spoken with about this issue this is not the case (it's there of course, and there can be individual cases which are devastating, although routinely caring for dying patients and their families is invigorating and a source of great satisfaction). It's the grind of documentation, patient-load overload, administrative-academic-clinical duties pulling at you at once, etc. etc.
Along these lines, they discuss the enriching aspects of caring for the dying:
Posttraumatic growth is characterized by positive changes in interpersonal relationships, sense of self, and philosophy of life subsequent to direct experience of a traumatic event that shakes the foundation of an individual's worldview. Posttraumatic growth is not uncommon and may occur concurrently with negative sequelae of trauma. The term vicarious posttraumatic growth describes the phenomenon of clinician growth that results from witnessing positive sequelae of other people's experiences of trauma. This may include the clinician's feelings that his or her own life has been enriched, deepened, or empowered by witnessing the patient's or family's posttraumatic growth. When patients experience meaning and peacefulness in relation to their approaching death, this enriches the lives of the clinicians involved. This phenomenon appears similar to the "healing connections" identified by Mount and colleagues.
A young pregnant woman develops a fatal cancer and dies before her daughter reaches her first birthday. Her partner cannot bear the thought of her dying. The suffering experienced by this patient, her partner, and the health care team suffuses all of the care providers' descriptions of this case. The deep sadness here is universal. What is also clear is the profound influence of culture and immigration on this young woman's experience at the end of her life and on that of her partner.