Sometimes it is difficult to speak candidly with a health care provider, but if our doctors knew how we felt we could be positively aiding in our own care!
Given the complexity of a diagnosis of stage 4 lung cancer, you sit in a fair number of exam rooms visiting with a great deal of doctors. In general, my doctors have interacted with my family and I with the best intentions to provide quality care. However, when you see a lot of doctors, it’s inevitable that the ball will be dropped once in a while and you will definitely interact with a lot of personalities. Not all doctors are created equally. Given that:
I wish my doctor knew that it’s exhausting to be my own quarterback!
I wish my doctors communicated more. Of course some MDs make those calls to check in with others overseeing your care. Those calls are worth a million dollars or better yet "my life!" To have a stressful appointment start out with, "Dr. XYZ and I discussed the following ...” is like hearing, "I thought about your case before I walked into this room because your life matters to me."
For me, the hours and minutes leading up to the precious minutes spent in the exam room have been analyzed by our whole family. We bounce around the questions, "What if the results are not good? What if the results are not bad enough to change the course of the clinical trial? What if the doctors do not understand or appreciate my symptoms? Will he/she listen to us?
I wish that they could understand the amount of energy that goes into emotionally preparing for such a visit. Appreciating this anguish may allow medical providers to take a pause before they come in the exam room with their clinical agenda.
I have nightmares about what my care could look like when I really take a nosedive — when I can no longer be fully aware of the diagnostics and treatment options. I am saddened to think of my poor family grieving the loss of my functions while trying to remember to remind a care team of pertinent medical details and going to clinicaltrials.gov.
I wish my doctors knew that it’s ok to say they don't really know!
As a veterinarian oncologist, I am fully aware that medicine is not black and white — it is a gray scale. Vague answers drive most anyone crazy! It’s OK to say you do not know something! What is refreshing is to know that you will do everything in your power to figure it out if possible or ask someone who may know.
I am an empowered patient and that has saved my life thus far. My questions and concerns are not challenging, they should be expected — this is a collaboration. This is my life. For me, having more information provides clarity, which translates into HOPE.
I wish my doctor knew that it’s not enough for me to just be above ground — I need to be a functional, thriving person. Palliative care is NOT hospice care.
As Abraham Lincoln recited, " ... in the end it’s not the years in your life that count. It’s the life in your years."
If my life is not improving, please consult with other specialists outside your traditional thinking. Think outside the box — offer palliative care earlier. Palliative care focuses on relieving pain, stress and symptoms associated with a serious illness. It’s appropriate to refer a patient to palliative care despite their age or stage of disease. It is provided alongside treatment — even with curative treatment. This care could include physical rehabilitation, psychosocial, pain and nutritional management and much more. For comprehensive information about palliative care: http://getpalliativecare.org
I wish my doctors knew that thirty is not the new seventy!
The American Cancer Society reports that the average age of a lung cancer diagnosis is 70. Less than 2 percent of patients are under the age of 45. Living with stage 4 lung cancer at a young age is different on so many levels than oncologists’ more common patient. Some of us have just started our lives and have lost the future that we planned. Some of us planned for kids, a career and travels. Of course, an elderly patient is also robbed of these future gifts, but given the age gap, younger patients goals for life can very different. These goals should be discussed and honored. Discussing this with your oncologist is different than you would with a mental health professional. Wouldn’t it be nice for your oncologist, who prescribes your treatment, to know what you are specifically fighting for?