I was in a meeting yesterday planning the outlines of a NIH grant to test the effect of early palliative care on quality of life and costs among patients with Congestive Heart Failure (CHF). A key aspect of any randomized control trial (RCT) is having clarity around what comprises the intervention. In a RCT of a pharmaceutical, the intervention is clear--one group of patients receives a drug, while the other group (the control group) does not. The difference(s) if any in patient outcomes are then inferred to be due to the drug since randomization is assumed to balance out any other patient-specific and treatment variables that could influence outcomes.
A key part of developing the protocol for our study is defining what will constitute the palliative care arm of the study, meaning what will those patients randomized to palliative care receive that the control group will not? There are many details that I won't get into. But, in the discussion of what the palliative care intervention would be like, an interesting question was asked.
- What is the difference between palliative care and disease management?
For me, the key aspect of palliative care is focus on patient goals of care and the provision of symptom relief, regardless of prognosis. Listening to patients and knowing how to process conversations not only with patients, but also families is a key part of palliative care. When I think of disease management it invokes images of following guidelines and menus of options given clearly defined clinical markers/signs/milestones, and not as much discretion as exists in palliative care. For disease management, you obtain information about patients, and then look to guidelines to motivate what comes next. For palliative care, you obtain information about patients, and provide information about options, but the locus of control should then move back to the patient to chart the way forward.
Sometimes the simplest questions are the hardest to answer. Does anyone have any thoughts about the differences between palliative care and disease management? Generally, or in the case of CHF, specifically?
Don
ReplyDeleteI think this may help:
1) Dx Mgt: Organ based (CHF), infection based (AIDS, Hepatitis C), system based (Lupus)
2) Palliative care: "globally" based, not focused on specific diagnostic disease based criteria.
Anyone can meet the defined needs of palliative care, but not the reverse with dx mgt.
For example: folks with CHF can meet palliative care criteria (general application of SF-36, ADLs, depression scale, pain scale), but not the reverse, ie, NYHA or ACC criteria for heart function.
Brad
ReplyDeleteYes, a succinct and helpful distinction. Very useful. Thanks!
Perhaps not for your NIH grant, but intuitively I think of palliation as easing distress on all levels, not just the physical. There is a holistic component that acknowledges the need to address emotional/spiritual sources of distress, as well as looking to emotional/spiritual sources for solutions (even of physical sxs).
ReplyDeleteOn a different tack, I have often wondered why mercy and the easing of distress is reserved for advanced illness and not a general expectation across the trajectory. It's nice to see it "leaking" into chronic care. :-)
Tasha
ReplyDeletegood point. My daughter who is a competitive gymnast severely broke her wrist in October due to a fall from the balance beam. She needed palliation for the physical pain of the injury. However, the fact that she missed a good part of her competition season has been a far larger burden on her (and her parents!) than was the physical pain of the injury. She has suffered great distress as has her dad from not being able to alleviate it for her....may seem trivial but a big deal to a 15 year old (and to a worried father).