"At this time, knowing what you know about your medical condition, what is most important to you?"
When a palliative care physician asks this question (read Post 1: What Exactly Does a Palliative Care Specialist Do?), they are trying to understand a patient's priorities, value, or goals of care (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2).
Clarifying goals of care may be helpful
- when a person does not want the "standard" medical care "I know what kidney failure means. I still don't want dialysis."
- when a person receiving "standard" medical care does not feel that things are going their way "I feel stuck. I take all of my CHF [congestive heart failure] meds and go to my appointments, but I keep coming back to the hospital. I can't keep the fluid off, but I don't want to come back to the hospital again."
- when a person is attempting to make decisions when there are no clear-cut paths in an overwhelming or terrible medical situation "My husband would never have wanted to be intubated in the first place and now the ICU doctors are saying his ALS [amyotrophic lateral sclerosis] is affecting his ability to breathe and that he won't be able to breathe off the ventilator. I don't know what to do."
(To learn more about when articulating goals of care could be helpful when making big medical decisions, read Post 54: Why Should I Care about My "Goals of Care?")
Over the past decade that I have been guiding patients and family members through difficult - and sometimes even high stakes - medical decision making, I have witnessed hopes and prayers evolve as one's medical condition (or that of a loved one) changed over time.
For the person trying to make the best of living with cirrhosis (scarring of the liver due to long term damage) and liver failure:
the goal for cure may mean traveling hours away to a hospital where they can be evaluated for possible liver transplant, and if symptoms such as recurrent ascites (fluid build up in the abdomen resulting in an uncomfortably swollen belly) and confusion from ammonia build-up resulted in repeated hospitalizations, this goal may evolve into
the goal for more "good" days at home sandwiched between hospitalizations while waiting to get a liver transplant, and if this person became weaker and weaker necessitating help to even sit up in bed, causing worry that a big surgery may do more harm than good, this goal may evolve into
the goal for ease and comfort, which may mean letting go of the hope of a potential liver transplant and accepting hospice support at home.
For the person attempting to adapt to life with a stage 3 colon cancer diagnosis:
the goal for cure may mean a willingness to rearrange daily life routines to revolve around regular radiation treatments, colon surgery, and/or weekly chemotherapy infusions, and if side effects were to be severe or the cancer was found to grow despite chemotherapy, this goal may evolve into
the goal for more "good" days without side effects such as severe nausea, diarrhea, fatigue, or lethargy impacting this person's ability to move around, which may mean intermittently pausing on cancer therapies or switching to another type of cancer therapy, and if there were less and and less "good" days or alert days, this goal may evolve into
the goal for more meaningful time with family and more comfortable days, which may mean letting go of cancer therapies that necessitate frequent visits to clinic, the cancer center, the rehab center, and/or the hospital and accepting hospice support to focus on maximizing quality of day-to-day life.
As I wrote in Post 46: How Being a "Fighter" Can Alter Your Path, changing goals does not mean that a person is giving up. One can still "fight" for what is most important to them even when what is most important to them changes over time.