Speaking to your doctor about how you want to die may be as hard as (or even harder than) talking to your family.
So, the folks who created a kit to help you start talking about death with your loved ones, while sitting around the kitchen table, are introducing the next iteration of “The Conversation:” How To Talk To Your Doctor.
A companion to the original Conversation Starter Kit, (which my blog partner Carey Goldberg used to talk to her father about death and dying) the new kit offers a detailed framework with plenty of helpful tools for the tough discussion. There are worksheets, sample scripts, a glossary of key terms, specifics about what it’s okay to say and clear, factual information on how to talk to your doctor, nurse or another provider about your end-of-life wishes, fears and concerns. (Examples: What to say if your health care provider doesn’t want to talk about it; What to do if your two doctors have conflicting opinions or if you disagree with your siblings.)
The Conversation Project was launched by a group of media and medical professionals who want to help families and loved ones begin to talk about end-of-life care far in advance.
I asked one of the founders, Jessica McCannon, M.D., of the Pulmonary and Critical Care Unit at Massachusetts General Hospital, what the biggest obstacle usually is for patients who wish to initiate these types of conversations and what might they do to overcome these barriers. Here’s her emailed response:
It’s hard to pick just one [obstacle] – and surely it’s a combination of things. The biggest obstacles are assumptions; an assumption that the health care provider will bring it up at the appropriate time. Or fear—that if they, the patient, do raise the subject, that perhaps they will be abandoned, that their health care team won’t continue to provide the care they need, or that their team will give up. Cultural beliefs also play a role; there may be cultural resistance to discussing these topics for some patients, which can be further complicated by family members who are struggling to accept their loved one’s mortality. Time is another; time often comes up in discussions about barriers for health care providers and the health care system, but I think this is also a problem for patients. If you have a limited time with your health care provider, and you have a lot of urgent questions about a new medication, or want to discuss new symptoms, it can be hard to prioritize what can be an emotional discussion over more pressing issues (this means that we all have to get creative about thinking of new formats/ways in which to share information about what matters most to patients)…
I think patients, and I include myself, need to think about it as a right and a responsibility. It’s a right in the same way that we think about a right to privacy, a right to decline to participate in research, etc. Whether it’s about end-of-life care, or whether it’s discussing preferences in the context of deciding about a particular procedure or use of a medication – it is an essential component of patient-centered care. It’s the responsibility of the health care team to elicit and the responsibility of the patient to share information about what matters to them.
Readers, have you had this discussion with your doctor, nurse or another care provider? What did you find helpful and what didn’t work so well? Please let us know.