In a culture, society, and democracy that protects freedom of speech, we do a terrible job of talking about the one inevitable thing that unifies us all: death. Openly speaking about death is a rarity and often taboo. One word of advice goes out to doctors:
There are thousands and thousands of patients across the nation who are sick enough to die and don’t know. Diagnoses are delivered without an explanation of the severity and gravity of the situation. Treatments are recommended without explanations that they are not curative. Urgent procedures and surgeries are recommended without explaining the risks or impacts on quality of life. Palliative care is too rarely called in as an extension of the care team. Hospice is often called too late in the end of life trajectory. Families are entirely unprepared for the inevitable, sometimes lost in a sea of medicalese and incomprehensible vernacular.
Suppose doctors and care teams aren’t talking about the end of life and the possibility of death. How can patients and their families make informed, educated decisions about their care, especially in times of medical emergencies and life-altering diagnoses?
As a patient and as a person who will one day die, ask yourself the following:
- Would you want to know if you were sick enough to die?
- Would you want to prevent unnecessary treatments, prolonged hospitalizations, and possibly significant out of pocket expenses and financial toxicity if you were sick enough to die?
- How would you feel if your care team knew that you were sick enough to die, but no one told you?
- If you were sick enough to die, would you approach your care and life decisions differently?
If you answered yes to any of these, here are words of advice for you.
If your doctor and care team aren’t telling you all of the information you need to make an informed decision about your care, you or your carepartner must request to see your medical records.
Request to review your latest imaging report. Scroll down to the section called Impressions. This section is a summary of any findings made by the radiologist. Abnormal findings and recommendations for the next steps will be found here. If your care team isn’t discussing this section, ask the doctor what the impressions mean for your care and life.
Request to review your biopsy or surgical pathology report. The College of American Pathologists has resources to help patients and their carepartners better understand their pathology reports. Scan down to the diagnosis section. Review the diagnosis identified. Note any details on stage, grade, or tumor markers. These details will help guide treatment and care decisions. If your doctor and care team are not discussing the diagnosis details, ask what these details mean for your care and life.
Request to review your latest bloodwork. The American Association for Clinical Chemistry AACC) has resources to help guide patients and their carepartners understand their bloodwork. Scan the results for anything flagged as High (H), Low (L), or out of the reference ranges. Some reports may have an actionable interpretation of the results. If your doctor or care team does not address any items that have been flagged as out of the normal limits, ask them what that means for your care and life.
If you are being prepared for discharge from a hospital stay, ask your discharge planner and care coordinator what your diagnosis is, what your expected outcomes are, what the treatment plan will be, when your follow-ups are, and where you are being discharged to. If you have any concerns or questions, ask to see your medical records and request that your care team carefully review these details and what they mean for your care and life.
If you have received a life-altering diagnosis or find yourself in an emergency medical situation, don’t be afraid to ask if you are sick enough to die. Every patient has a right to fully understanding the answer to that question, whether it is no, yes, or somewhere in between. Doctors and care teams do not have to get death right. There is often no magic predictive algorithm. But they can get the conversations about end of life right. Patients and families can also help by getting the questions and discussions ready.