What Kind of Questions Should I Ask My Doctor About My End-of-Life Decisions?

Discussions about end-of-life care and end-of-life decision-making can be intimidating. Few are comfortable talking openly about what will happen if they become seriously ill. However, talking to your doctor and asking appropriate questions is the best and the only way to fully understand your choices and develop a plan for care that aligns with your wishes and values. To that end, these are some crucial questions you should ask your healthcare provider about end-of-life care:

What is my diagnosis?

Before making any decisions about your care, knowing your diagnosis and what it means is essential. Questions that may help clarify the information include:

• How is this diagnosis causing my symptoms? 
• Are more tests needed to confirm the diagnosis?
• How soon will we have a definitive answer?
• Is this a life-limiting condition?

What is my prognosis?

Knowing what you can expect as your disease progresses can help you prepare physically, emotionally and financially for what’s to come. Your provider cannot predict the future, and disease progression can vary from one individual to another. However, your doctor can give you some general parameters that can help guide your decisions in the near and long term. Some specific issues to address include:

• How long can I reasonably be expected to live? 
• What might my long-term care needs look like? 
• Will I be in pain? What can we do to control it if I am?
• What other symptoms can I expect? How will I manage them?

What treatment is available?

Medical treatments for many serious illnesses are improving almost day by day. So, it’s essential to ask your provider what is currently available and what treatments or medications may be available in the short term. Some other important areas to discuss include:

• What kind of treatments are available for my condition? Which do you recommend?
• What are the expected side effects of this treatment, and how will we manage them? 
• What can I expect from this treatment regarding improved or diminished quality of life?
• What are the best outcomes you have seen with this treatment? The worst?
• What are some possible alternatives if I decide not to go with the recommended treatment plan? 
• What if I do not want to pursue treatments but instead want to focus on symptom management and quality of life?
• If I need surgery, how long will the anticipated recovery period be? 
• If I undergo the recommended treatment, how will it impact my ability to work for a living and care for myself and my family? 

What to do next?

Once you’ve discussed your diagnosis and expected disease trajectory with your provider, it’s crucial to identify the next steps. In addition to treatment decisions, you will likely need to make plans for your personal and professional life. Some questions you may want to consider include:

• Will I need to take time off from work?
• Will I be able to continue to meet my responsibilities at home (e.g., childcare, grocery shopping, preparing meals)?
• Is it likely that I will need the assistance of family members or paid caregivers?
• Should I have a POLST? 
• Should I have an out-of-hospital DNR?
• Should I consider enrolling in hospice or palliative care?

Additionally, this is an ideal time to review and update your advance directive (or create one if you’ve not already done so) and discuss your treatment goals with your healthcare surrogate and loved ones. Make sure your healthcare provider and surrogate decision maker(s) have a copy of the most up-to-date version of your advance directive and that it is on file in your medical record as well.