What To Do When A Parent Is Terminal
GOOGLE “HOW TO HELP TERMINALLY ILL PARENT,” AND YOU’LL FIND LOADS OF USEFUL CHECKLISTS THAT CAN FOOL YOU INTO THINKING YOU’LL BE PREPARED. BUT DO YOU KNOW WHAT IS ACTUALLY WORTHLESS? HERE ARE FOUR LIFE LESSONS FROM RON GERACI THAT COULD MAKE A DIFFERENCE.
SEE A PALLIATIVE CARE DOCTOR RIGHT AFTER DIAGNOSIS.
This might seem like cocking a rifle around a limping pony, but it’s essential. Research shows that your parent will live better and possibly longer if you bring in a palliative care specialist as soon as you can, says Jennifer Temel, M.D., an oncologist and professor of medicine at Harvard Medical School. Dr. Temel’s landmark 2010 study in the New England Journal of Medicine discovered that patients with stage IV lung cancer who received palliative care within two months of diagnosis lived longer than those who didn’t.
They also had significantly better mood and quality of l ife. This was probably due to better pain and symptom management, less distress, and less aggressive treatment.
MAKE A VIDEO
Mom wrote letters to us in case she didn’t survive her first brain surgery. Had I been smarter and more prepared, I would have recorded a video after she was diagnosed and asked her to answer these three questions:
1 What matters the most to you at this time in your life?
2 What activities do you most enjoy doing?
3 What do you really hope to do in the next few months or years?
A video like this will tell the medical team what your parent really wants from treatment, says Arthur Caplan, Ph.D., head of medical ethics at New York University School of Medicine. Hearing how your parent wishes to live and what he or she is living for--in your parent’s words--can offer an entry point to talk about the therapy’s likelihood of delivering those wishes. Dr. Periyakoil created a letter template for doing this. (Google “Periyakoil” and “letter.”) Caplan recommends recording a video of your parent reading the letter to give it more impact to doctors.
FRAME DIFFICULT QUESTIONS WITH “WOULD YOU BE SURPRISED. . .?”
Instead of asking, “What’s the chance that Dad will make it to Christmas?” ask, “Would you be surprised if Dad died before Christmas?” This wording may yield more honest information about your parent’s prognosis.
RECAP WITH THE “TEACH BACK” METHOD
Physicians tend to deliver bad news in a massive info dump, buried under medical jargon and euphemisms. This helps obscure what might be emotionally devastating. (For example, the word “lesion” may sound less frightening than “tumour.”)
To get the true bottom line, tell the physician how you’ll relay to another family member what he or she just explained. Distilling 3,000 spoken words into “Dad’s cancer has spread but you think chemotherapy will buy him another three months of life pretty much as he’s living now” can help force specifics into the conversation--or at least make the doctor aware if you don’t understand the situation.