What to ask your doctor about end-of-life care

Even if you’re in good health, you need to ask your doctor about your end-of-life care so they know your choices, particularly if you or your loved one has a chronic or terminal illness. In fact, the best time to discuss your heath care choices is when you are well, so that it can be done with ease and not charged with fear or a sense of urgency.

The best way to plan for your end of life care and medical choices is by asking your doctor to create a healthcare plan with you. But it is so important not to hand over all the decisions to your doctor because you think they know best.

No one can know what’s best for you except you! Here are some tips to having that challenging end-of-life care conversation with your doctor.

1. Choose your doctor wisely and build a relationship.

Gone are the days of ‘the family doctor’ who has been there through births, illnesses and deaths over the course of your lifetime. In these days of bulk billing, locums and large medical centres, it can sometimes be difficult to find a doctor you like and be able to build a meaningful relationship. Sometimes it can take weeks to get into your preferred doctor, while you can see ‘someone else’ quite quickly. However, it’s important that you seek out a doctor whom you feel is empathic, a good listener and accepting of your life choices. When you find that doctor, make a concerted effort to build a real relationship with them by finding out who they are, what they enjoy outside of ‘work’, their own life values etc. It will pay off when you’re at the pointy end of life I assure you.

2. Gather your medical team

These days there is a raft of specialist practitioners who will work with you when you are ill, and that list expands if you discover you have a terminal illness. The team might include:

Your primary care doctor (GP), your nurse and/or nurse practitioner, your specialist if you have a chronic condition (heart, lung, skin, oncologist etc.), your therapist, social worker, psychologist or psychiatrist, your case manager, palliative care specialist, therapist (massage, yoga, naturopath, chiropractor etc.), admitting team (if you are hospitalised) and the staff physician or nurses if you are in an assisted living or aged care facility.

3. Be clear about what you want to know

Clarity and brevity work in an environment where our medical team can be under the pump and wanting/needing to move on to the next person with their own set of problems, so it’s important to be clear and concise in your conversations. Write a list of questions down before your appointment.

4. Prepare the doctor for the conversation you want to have.

When you make your appointment, tell the receptionist, ‘I want to make an appointment to discuss my my end-of-life care wishes with Doctor …..’ so they know how much time to set aside.

If your partner/loved one/child always accompanies you to appointments and you want to speak with the doctor privately, tell the receptionist when you book the appointment:

“Could you please tell the doctor that I’d like a chance to talk to him alone when I visit on Friday?”

5. Ask the right questions

If you discover you have a major or enduring health issue, ask your medical team (some or all of the practitioners mentioned above) the questions below.

Tick off each question as you ask it and it is answered so you walk out feeling good about the discussion you’ve had.

  • Please explain to me the condition I have in simple terms.
  • Can you tell me what I can expect from this illness? What are the symptoms as I go forward?
  • What is my life likely to look like 6 months, 1 year, 5 years from now?
  • What are the available treatment options?
  • What are the chances of these treatment options working?
  • How soon will we know if the treatments are working?

And then find the courage to ask the tougher questions:

  • What happens if these treatments don’t work?
  • What can I expect about my ability to function independently?
  • What are some of the big changes in my health that my family and I should be prepared for?
  • What can I expect if I decide to have no treatment?

It’s important to realise that all of these answers come with a level of uncertainty. It’s impossible for predict accurately the outcome of treatments and how long you will live as we all respond differently to treatments.)

Taking time to fully understand the discussion.

Sometimes we feel the pressure to understand everything the first time when speaking with an ‘expert’, but it’s vital that you walk away feeling that you fully understand what has been said (that’s why recording the conversation is a good idea to allow you to go back over it). If you feel overwhelmed, you can say things like:

  • “I don’t understand – can you explain again/in a different way?”
  • “Could you write this down for me?”
  • “Do you have a brochure on this that I can take with me?”
  • “Who could I talk to about this condition when I leave here?” Is there a support group?
  • “I’d like to talk this over with a friend/my family. I’d like to have another conversation with you in a couple of weeks after it has sunk in.”

Don’t wait until there’s as crisis or for your doctor to bring the subject up. One conversation won’t be enough–you may be in such shock that a lot of the information won’t even sink in for you, and you’ll probably walk out with a lot more questions than on your original list-and sometimes conversations just don’t go as planned. Make follow-up appointments until you feel you fully understand what is happening.

Awesome resource to access:

How to Talk to your Doctor by the Institute for Healthcare Improvement’s Conversation Project. Their motto: ‘It’s always too soon… until it’s too late.’

Compassion in Dying’s What Now? Questions to ask after a Terminal Diagnosis

Cancer Council’s Questions to Ask Your Doctor