You may appreciate the value of advance directives and have them yourself but are unsure how to start the discussion with a loved one. There are several reasons why discussing advance directives is so challenging for most people and why many avoid the conversation altogether.
What Are Advance Directives?
Advance directives are a group of legal documents describing what health measures you would want if you can’t speak for yourself. The details of advance directives can be hard to think about. For example, if you are unconscious and unlikely to recover your previous level of functioning, would you want to be revived? Who do you trust to make healthcare decisions on your behalf if you cannot do so? What types of life-saving interventions are you willing to have if you are at the end of life?
It is human nature to delay such thoughts of incapacity, illness, or even death. Without this discussion and the completion of these legal documents, your loved one could face interventions they don’t want. Without advance directives, family members can disagree about the end-of-life and life-saving measures for your loved one.
Luckily, you’re not on your own. This guide breaks down our suggestions and tips on who to have these discussions with, how to broach the topic of advance directives, and how to keep the conversation going.
Who Should You Discuss Advance Directives With?
The fact is you can discuss advance directives with anyone who has an interest. Even closer to home, you may be thinking about parents, grandparents, a spouse, or a partner.
Although medical events mainly affect older adults, younger people can also have life-threatening, catastrophic events. The approach with each of these groups may be different in the following ways:
Spouse or Partner
It is not that unusual for one person in a relationship to see the value of advance directives but the other to minimize its importance since you are both healthy. While spouses have certain rights and privileges to make critical medical decisions on their spouse’s behalf, there are limitations to those rights depending on where you live.
For example, confidentiality laws may prevent you from intervening on your spouse’s behalf. The safe course of action is to document health care power of attorney and end-of-life wishes. You may be surprised at the conflict that arises among other family members if someone is incapacitated and medical decisions are not spelled out in a legal document.
Parents or Grandparents
Parents and grandparents can be especially resistant to the idea of discussing advance directives and future planning. They want to maintain autonomy, control, and independence, and discussing disability is too threatening.
However, with older adults, time is short, and the situation is urgent if your parent or grandparent has cognitive impairment. If their mental functioning declines, it may be nearly impossible to obtain consent since they may not have the ability to understand advance directives.
Children
If you have a child under the age of 18, you are their legal guardian and can make healthcare decisions on their behalf. But what about a disabled or ill child over the age of 18?
Unless you are your child’s legal guardian, discussing their current medical condition and options for treatment is reasonable. If your adult child’s situation is evolving, keep a flexible attitude and revisit advance directives as often as necessary. Even in cases where a young adult is healthy, designating a healthcare power of attorney is valuable.
How Can You Start the Conversation About Advance Directives?
Starting the conversation about advance directives is part preparation and part finesse. Your approach depends on the person- their personality and your relationship with them.
An end-of-life planning discussion can be anxiety-provoking, but we have some tips that you can adjust to suit your specific situation:
- Focus on yourself: Start the conversation by discussing your own wishes. Discussing your journey is less threatening and can be a way to open the discussion about health care decisions and end-of-life wishes. Talk with your loved one about how you made decisions about medical interventions and the value of a healthcare power of attorney.
- WIshes: Rather than talk directly about advance directives, start the conversation by informally asking about your loved one’s feelings about their health and the end of life. What do they want their aging to look like? How would they like healthcare decisions to be made, and how do they envision their last days?
- Estate planning: Make the conversation a part of estate planning. Most estate planning attorneys make establishing advance directives a component of financial planning documents.
- Recent loss: Talk about a friend or relative that died recently. Discuss what happened with their situation and open the door to discussing what your loved one might prefer.
- Support: If it seems right, express your support for their goals and decisions. Let your loved ones know that their wishes must be in writing for you to advocate for them and ensure that their wishes are followed.
How Can You Keep the Conversation Going?
Keeping the conversation going about advance directives can seem like a marathon, and it can be. Remember, it’s okay if these plans change over time. If you don’t have success right away, stay proactive and persistent.
Here are some tips on keeping the conversation going with the end goal of getting advance directives accomplished:
- Be gentle: First, try not to push too hard. You are more likely to produce more resistance by pressuring, setting you back in your discussions.
- Respect: Always use a tone of respect when having these discussions. Tone and attitude are essential when talking with parents or grandparents who can be very sensitive to feeling marginalized and as if their opinion doesn’t matter.
- Educate: Provide some reading material about the subject, making the topic more accessible and giving more time to digest concepts.
What If Your Loved One Isn’t Ready to Talk About Advance Directives?
It can be a very frustrating experience if your loved one isn’t ready to talk about advance directives. Sometimes you have to accept that this isn’t the right time.
Though it might be difficult, these suggestions help:
- Talk later: Be willing to have multiple discussions. Try to be sensitive to the best times to approach the subject.
- Smaller steps: Break advance directives into more digestible pieces. For example, start with a health care power of attorney which for most people makes sense and avoids sensitive topics like end of life. See if you can at least get that one task accomplished.
- Bring in others: Ask for help from someone else. Your loved one might have a friend, spiritual leader, or another member of the family who might have better success in talking with them about advance directives.
- Take a break: Finally, give up for a while. If your loved one isn’t ready, leave the subject for some time, but return to it later. Schedule a time for yourself to revisit the discussion so you don’t let too much time slide by.
What Are Good Next Steps for Your Loved One to Take After Your Discussion?
If you succeed in getting your loved one to agree to advance directives, there is much more to do. Act as soon as possible to put everything in place by following the steps below to keep the ball rolling.
Step 1. Complete all the paperwork.
Each state has different advance directive documentation and requirements. Be prepared with the paperwork and witnesses or a notary if necessary. The actual discussions about end-of-life wishes can be emotional, so take the time your loved one needs to feel good about their decisions. Let your loved one know they can revise any part of advance directives if they change their mind later.
Step 2. Make copies for the family
All family members should have copies of advance directives. Upload advance directives on Cake and provide access to those that need it. Ensure your loved one has a copy handy in an emergency. Emergency personnel must see the document to follow the directive if your loved one has a DNR order.
Step 3. Give healthcare providers a copy
Of course, each healthcare provider and entity will need a copy of the advance directives. Typically this involves providing a copy that is scanned into your loved one’s chart.
Step 4. Re-visit advanced directives yearly or more often as needed
People and circumstances change. Regularly revisiting advance directives can open up a discussion about whether things remain the same or changes are needed.
Step 5. Prepare to review advance directives in an emergency
The current advance directive may need review if your loved one is admitted to the hospital during a life-threatening emergency. In most cases, the hospital could require a POLST which overrides the advance directive in specific circumstances.
Helpful Links, Tools, and Articles to Keep the Discussion Going
Sometimes other sources of information can guide and acquaint someone with advance directives that can augment your discussions. It’s a good idea to have as much support as possible.
National Institute on Aging
The National Institute on Aging has an accessible website that goes over advance directives in detail. It goes over the meaning of terms such as “comfort care” and “CPR.”
CaringInfo.org
CaringInfo.org is a service of the National Hospice and Palliative Care Organization. The site contains information on communicating end-of-life wishes, dealing with grief and loss, definitions of palliative and hospice care, and understanding Medicare and Medicaid.
AARP
AARP has several articles and a video about advance directives and living wills. The article on living wills uses easy-to-understand and straightforward language about what is included in a living will and why it is so important.
Five Wishes
Five Wishes is an advance directive created by Aging with Dignity, a non-profit organization. Five Wishes is not legal in every state but is a good place to begin and continue conversations about end-of-life and healthcare proxy. One online or hard copy of Five Wishes costs $10.00.
HeathinAging.org
HealthinAging.org is a service of the American Geriatrics Society. Their section on types of advance directives is easy to read and can be a great starting point in understanding the components of advance directives.
Having the Advance Directive Discussion
It is awkward and uncomfortable to discuss end-of-life or other life-altering issues before they occur. But these discussions with a loved one will allow everyone to express their wishes.
Advance directives formalize those preferences to ensure compliance with some of the most personal decisions any of us will make. Above all, they’re a reminder to be prepared.
