Advance care planning doesn’t need to wait for your golden years. In fact, at any age, a medical crisis could leave you too ill to make your healthcare decisions. For example, do you ever remember driving by the scene of a bad accident and saying, “I hope they are alright.” Then you might imagine if that were you; and, you were left unable to speak or make decisions. What would happen? Did you ever wonder who would speak for you about the care you would like to receive? If you don’t know, it’s time to start thinking about advanced care planning.
Usually it is a crisis or a major illness that prompts these types of discussions. However, it’s better to plan for a potential medical crisis or illness when you are well. Having that time to really think about the type of healthcare you would like to receive and what that would look like is important. What are the possible health problems that you could be faced with? Does heart disease or cancer run in your family? Considering the treatment options, would you want to live as long as you could utilizing every advanced treatment available, having life saving measures if your heart stops or would you want to just focus on comfort care if you were suffering from a lengthy, terminal disease.
It all depends on what matters to you and what is important to you. Whatever you decide an advance directive can help you and your loved ones make the right decisions for you. And, these decisions can be very different from when you are young, in your mid-life or when you are elderly. Your advance directive can change as you age or when your health situation changes or if your viewpoint on end-of-life care changes.
GATHERING YOUR THOUGHTS
It’s important to take the time to consider any number of situations that could happen to you and your family. Thinking about the ‘what-ifs’ now rather than the ‘coulda woulda of shoulda’ after the fact.
What would be important to you at end-of-life? Every person is different with their own set of personal values and situations. One may need to plan for a special needs child and ensure that they are taken care of – a place to live, a caregiver, enough finances to cover them for as long as they live. Another may want to be at home surrounded by loved ones with comfort care. It’s all about what is right for you.
A good self-exercise is finishing the sentence that starts with: What matters to me at end of life is….
So, there are a lot of things to consider. t’s important to start thinking and sharing your wishes for what kind of care you would like to receive at end-of-life with your loved ones before a medical crisis happens. These kinds of conversations can help to lay the groundwork for what would matter most to you if you should ever become unable to speak for yourself.
Talking about these things with your loved ones helps to make the difficult decisions easier when the time comes. Most likely you will have several conversations over time.
SETTING THE STAGE FOR THE CONVERSATION
Taking the time to think everything through will make your conversation easier and better for everyone. There was a woman who invited all of her children over for cake and coffee. While her grown children were sitting around the table she proceeded to tell them her wishes when she was at the end of her life. She went through everything from not wanting CPR to the dress and jewelry she wanted to wear at her funeral. She was able to inform her children of her wishes and what she expected them to do when she became too ill to care for herself and when she died. This elderly mother took control of her wishes and orchestrated the ‘talk’ to make it easier for her children and to ensure her wishes would be followed.
But that is just one example. There are other things to consider including:
- Who do you want to talk to? Your spouse, children, friend, caregiver, pastor
- What if your wishes are not the same as your husband and family?
- Who would be the right person to carry out your wishes? Would it be your eldest child, or would it be your daughter who you know will respect your wishes, even if she disagreed.
- Where should the talk take place? Pick a location that would be best for you. It can be as simple as at your kitchen table or at your place of worship.
- When should you talk to your doctor?
- When is the right time to talk – now or on the next visit home?
Procrastination is easy to do; but, it is risky when you or your loved one has a progressive illness. Just know that it always seems too early until it is too late.
And what should you talk about?
Should you break it down and talk about different topics at different times? Healthcare treatments for your disease? Finances? Where would you prefer to die?
Here are other questions to consider depending upon your situation:
- What will make you feel ready to have this conversation?
- Do you have any concerns you want to bring up?
- What will be most important to you at the end of life?
- How involved in treatment do you want your healthcare provider to be?
- How long should you receive medical care?
- How involved do you want any or all of your loved ones to be?
You can also download our end-of-life care conversation kit to get started with these questions.
There are a few things to remember:
- Having the conversation can be hard because you and your loved ones may disagree on a lot of different things.
- It’s okay to talk several times with your loved one about this. It’s not a one-time deal.
- It’s okay to be nervous to talk about the end of your life, which can be difficult for you; but, for others too.
When it comes time to have the conversation with your loved ones, think about who you want to talk to, when is the best time to have the talk, where you’ll be most comfortable and what do you actually want to say.
HAVING THE CONVERSATION
Many people hesitate to talk about their end-of-life care decisions because they don’t want to think about what could happen to them. However, it’s very important to not wait. This can cause confusion amongst family members and even your healthcare provider. By putting it off, the delay may result in a crisis for everyone.
To start the conversation, you could start by asking your loved one to help you with something or start with, “Even though I am okay right now, I am worried about ______ and want to be prepared in case of an event.”
A few things to remember as you are having this talk:
- Patience is key. It’s hard to think about a loved one’s death, especially when they are sitting right in front of you.
- This conversation is meant to have the ability to change. As you talk with your loved one more, your decisions may change.
- End the conversation when you feel it’s time. This is one of many conversations you should be having about your end-of-life care decisions. You don’t have to cover everything.
THE POWER OF PLANNING FOR YOUR FUTURE
Betsy Pyle lost her husband, Jamie Pyle, an associate dean for medical education. Betsy and Jamie were smart. They researched, planned ahead for as much as they could and took the rest as it came along. Their journey was much easier on them because they embraced what they were facing and went forward. Jamie was able to set goals, like writing his book and seeing his son graduate before his death. That’s the power of advance directives and planning ahead.
Here’s their story
In 2008, Jamie commented on how he felt his gate had changed. He found himself trapped in the course of just walking around. After contacting a neurologist, and a year of appointments, Jamie received an ALS diagnosis, also known as Lou Gehrig’s disease.
“It’s always hard to lose somebody you love. When you are faced with having to walk down that path, to have the support of West Virginia Caring definitely helped my family experience the things we went through as we lost my husband,” Pyle said. “People should open their arms to hospice care much sooner. Hospice care is really about living life to the fullest while you’re alive and not focusing on the end of life.”
Watch more of Betsy’s story below.
WV CARING | STARTING THE END-OF-LIFE CARE CONVERSATION
WV Caring believes that it is important to start the end-of-life care conversation early so in the event of an accident or medical crisis, you know who is speaking for you.