December 11, 2017
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?
- What steps should I take now to maintain the best the quality of life?
- What resources are available to help me and my family better understand PD and the choices to be made?
What to tell my family
- Will you help me tell my family about this disease and what we can expect is going to happen?
- Do I have to tell everyone? What should I tell different groups of people (e.g., what should I tell my young grandchildren or elderly parents)?
- Can I decide whom the medical team can share information with and how much information I want those people to know?
What to do at work
- Can I still work?
- When should I tell people at work?
- Is my job safe? What if my PD interferes with some of my job requirements? Can I request a modification of assignments?
- How do I find out about legal protection for my right to work?
Getting sicker
- How long will I be able to function on my own?
- What changes will I have to make? How do I know when to get help?
- What can I expect will happen to me?
- Do I need an emergency plan?
- How long do I have to live?
- How do I handle my grief over being terminally ill?
- How do I help those who care about me?
- How much do I have to know or should I know about what comes next?
What choices will I have to make
- What are my medical options and what kinds of interventions should I consider?
- Will I have to leave my home?
- Can you describe palliative care and how I would benefit from it?
- 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?
- Living Wills
- 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?
Dying
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.
https://parkinsonsdisease.net/living/questions-about-dying-discuss-with-doctor/
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