One of the most difficult parts of end of life planning is starting the conversation. Talking about death and dying is one of the hardest things we will do with our loved ones. Here, we will outline the importance of having the conversation about planning end of life care and how to break the barrier of getting the conversation started.
There are so many things that we need to talk about, it may seem overwhelming and you don’t want to leave anything out. Let’s try not to make this a difficult conversation (fake it ‘til you make it, as they say). Pretending you are comfortable even if you aren’t might encourage our loved ones to be comfortable as well.
When to Start the Conversation
The short answer is now. Handling these issues before you are forced to worry about them will allow you to learn what your loved one’s wishes are. This then lets you spend final days visiting your loved one, reminiscing, and filling them with love.
Why it’s Important to Discuss End of Life Planning
It’s hard to be left to make the difficult choices alone, especially when we are not sure what our loved ones wishes truly are. Knowing know what is important to our loved ones can make sure their needs are met for when the time comes.
What we Need to Talk About
Here is a list of questions you can print out and go through with your loved ones. You may not want to tackle all of these question on one day as it could get pretty emotional so you can spread them out as you feel is needed. Another idea is to have the people involved in the conversation also give answers. This way it is not as much pressure on them. Don’t forget to write down their answers!
- Do you want to be surrounded by friends and family?
- Do you want to remain at home as long as possible?
- Do you want to have private conversations with anyone?
- Do you have questions about dying?
- Do you want members of our faith community notified that you’re sick and asked to pray for and visit with you?
- Do you want others by your side praying with you?
- How do you feel about leaving this earth?
Wishes for Healthcare
- Do you want life-support treatment?
- If life support has been started, do you want it stopped?
- What does life-support mean to you?
- Does this change if you are not expected to recover?
- Are there any conditions where you do not wish to be kept alive?
How Comfortable They Want to be
- Do you want pain relief even if you might get drowsy?
- Do you want to be offered food and fluids by mouth and kept clean and warm?
- Do you want to be massaged with warm oils?
- Do you want music playing?
How They Want Things Done
- Do you want to be surrounded by people when possible?
- Do you want photos of your loved ones in you room or near your bed?
- Do you want the mood to be cheerful rather than sad?
- Do you want personal care like shaving and teeth brushing?
- Do you want to know options for hospice care?
How They Want People to Treat Them
- Do you want your hand held?
- Do you want to be talked to?
- Do you want to be read to?
What They Want Their Loved Ones to Know
- Do you fear death?
- Do you want family and friends to know that you love them?
- Do you want to explain any choices you’ve made?
- Do you want to pass down any secrets?
- Do you wish to be forgiven, or to forgive?
- Do you have regrets you want to talk about?
- Do you wish to thank someone?
- Do you wish to be buried, cremated, or something different?
- Do you want to wish to be an organ donor?
- How do you want to be remembered?
- Do you have any wishes for your memorial service?
Other Items to Consider:
Before the discussion, think about what else may be important to them that you can bring up.
- Is there an item that is dear to them that they want someone special to have?
- Do they have any pets they’d like to have any wishes for?
- Is there anything special they want younger grandchildren to know about them?
- Do you want to write a letter to anyone?
How to Bring up the Conversation
This is the part we might be afraid of, but we shouldn’t be! There is no reason that we need to be worried about starting these conversations. You will feel much better by having these conversations and will be thankful for them one day. If you are afraid that your loved one will be uncomfortable, here are some suggestions for introducing the idea:
- Perhaps a story in the news provides a good opening.
- Use an indirect reference (a friend who hadn’t spoken to family about their wishes and how hard that was for the family).
- Discuss the distress you would feel in making decisions without knowing their wishes.
- Acknowledge how uncomfortable you feel bringing it up.
- Explain that your attorney or financial advisor recommended that you bring it up.
- Many families use Five Wishes to help start and guide family conversations. Five Wishes is a popular living will because it’s written in everyday language and helps people express their wishes in areas that matter the most. Ask your loved ones to complete Five Wishes for you as a gift to you (and to them).
Responding to Resistance
Of course, it’s possible that your suggestion to have this conversation may be met with resistance. Your loved one may think of themselves as independent, private, or afraid to “burden” you with their care. The truth is, we have to continue to push others to understand that this is a natural conversation that we all should be having. Responses to some possible retorts follow:
- “I don’t need to discuss life support.” Tell them you should each create an advance directive together (side benefit: you will also be prepared for the unforeseen).
- “It’s in God’s hands.” God has given us the responsibility to determine how we live while we’re here. Explain that you understand it is up to God, but you still want to ensure their wishes are granted in every aspect.
- “Talking about it is too hard/bad luck.” Acknowledge their concerns and explain that you also hate making tough decisions – but that you don’t want to make the wrong decision for them. Give them time to get comfortable with the idea, by setting up a specific time to talk about it in the future.
- “You know what I want. I don’t want any heroics.” Does that mean no CPR? But what about antibiotics if you have pneumonia? What if family members disagree?
Who Should be Involved in End of Life Planning?
That’s up to you. You likely know your loved one better than anyone. Family members or friends that you and your loved one are comfortable with, who care about your loved one, can be involved. This doesn’t mean that they have to be named the Health Care Agent; but perhaps they could help pick the right Health Care Agent.
As difficult as these conversations are to have, they could not be more important. Remember that we are here to help when needed, and welcome the opportunity to make you and your loved ones more comfortable at any point along the way.
Read our blog “Final Transitions – Enhancing End of Life Planning” which discusses estate planning items to consider if you or a loved one is going through their final phase of life. https://www.shakespearewm.com/blog/final-transitions-enhancing-end-life-planning/