Getting a diagnosis of a terminal or chronic disease, such as Parkinson’s disease (PD), is often a shock. The impact on patients and families is a very individualized experience. For those with late stage Parkinson’s, there is often confusion and fear associated with talking about what could happen. This often results in people not talking about decisions that can affect the approach and quality of care received, especially toward the end of life. This guide may help you get the right information to make the best decisions for your care.
Schedule a conversation with the doctor
Below is a list of questions to bring to a doctor’s appointment to guide a discussion to better understand the current condition and end-of-life issues that may be faced. Most people with PD have a care team consisting of, at a minimum, a primary care physician and a neurologist, many will also have a mental health professional. You should start this conversation with a doctor you are comfortable with or the one who you think can best provide the information you are seeking now.
This is not a one-time conversation, but the start of an ongoing dialogue.1 Conditions and wishes change over time. Creating an open atmosphere can ease your fears and help you get the most appropriate care.
Taking a family member or close friend along can help you to record the information as well as provide someone to discuss things with later. Bring a notebook or ask the doctor if you can record the conversation with your phone or other recording device.
My current health
Can you help me understand my current medical situation?2
What is a chronic condition versus a terminal illness? Will I die from Parkinson’s?
Can you describe hospice care and how I would benefit from it?
May I make my own end-of-life decisions?
What are advance directives?
Health Care Proxy
Durable power of attorney
POLST (physician order for life-sustaining treatment)?
How do I get all necessary information into my medical record while I still can?
How will I know if I should continue or stop curative treatment?
Can I decide where I want to die e.g., at home or at the hospital?
What if my family doesn’t agree with my wishes and I can no longer speak for myself? Will you honor my wishes?
Remember, this is just a discussion guide to start a conversation for end-of-life planning.3 It can help you to think of your own questions related to your personal medical situation. No question is too small or too silly to ask. Your medical care team may find it easier to have these discussions if you bring them up. The more you know and understand the easier it may be to prepare for this difficult time.
Boghani P. Facing Mortality: How to talk to your doctor. Frontline.
http://www.pbs.org/wgbh/frontline/article/facing-mortality-how-to-talk-to-your-doctor/ Published February 10, 2015. Accessed online August 15, 2017
Serious Illness Conversation Guide Ariadne Labs: A Joint Center for Health Systems Innovation (www.ariadnelabs.org) and Dana-Farber Cancer Institute.
https://www.ariadnelabs.org/wp-content/uploads/sites/2/2015/08/Serious-Illness-Conversation-Guide-5.22.15.pdf Published May 22, 2015. Accessed online August 15, 2017
Talking about your illness with loved ones and caregivers Ariadne Labs: A Joint Center for Health Systems Innovation (www.ariadnelabs.org) and Dana-Farber Cancer Institute.
http://www.talkaboutwhatmatters.org/documents/Providers/SI-Family-Communication-Guide.pdf Published October 30, 2015. Accessed online August 15, 2017