Plan with your parents before it's too late. You'll be glad you did.
A while back, we sent out a newsletter to our community about keeping an organized notebook to help your aging parents take care of their affairs.
It’s essential to communicate with your parents about managing their finances, insurance, everyday affairs, current doctors and their contact information, medication details, and other events/episodes that may need a pair of extra eyes.
Because of the COVID pandemic, more than ever, it’s time to begin thinking about having a heartbreaking conversation about what to do in the worst-case scenario, particularly if your family member lives alone.
While “the talk” is difficult, you need to hear straight from your parents about things like what does the quality of life look like to them, what they want, don’t want, and what’s most important to them in the event that others have to make medical and end-of-life decisions on their behalf. It will make things much more comfortable and avoid a lot of suffering for everyone involved in the care of aging parents.
How Do I Even Begin To Approach This?
Of course, if your aging parents have already carefully approached the topic with you, you don’t have to worry about bringing it up. If they haven’t, and you’re the one that has to address it, there are some things you can do to take the sting out of the conversation.
If you’re uncomfortable talking about it, for their sake, get over it.
Statistically speaking, end-of-life care seems to be a subject most aging parents think is important to talk about and explore resources for. Still, very few of us actually end up discussing it with our loved ones.
Approach the subject as something you’re comfortable talking about. It’s entirely possible your parents haven’t approached you about it first because they’re worried about how you’ll feel. Letting them know you’re open to dialogue can put them at ease.
Begin with the medical points before easing into finances.
Start with a real-life circumstance. For instance, if you know someone whose family is left to make difficult medical decisions for their aging parents, carefully offer up the subject and resources for the conversation.
Anecdotes about your feelings, supporting ideas for your aging parents, and what resources you’re planning to utilize to take care of them and ensure your own family doesn’t have to go through that are always good suggestions.
Concerns about things like the handling of estates and living wills can wait until their medical wishes are nailed down.
Share your plans with them.
Mention your own plans to meet with an attorney to draw up your own living will and advance directive. Sit down with them and review your wishes after you meet with your lawyer, so they’ll know exactly what they are. It may be the motivation they need to take action on their own behalf.
Remember, both of your aging parents need end-of-life care resources and supporting plans. Just because dad has one doesn’t mean mom is taken care of, too. Plant the suggestion that they should coordinate their plans as a couple.
Involve your siblings.
Include your siblings in a supportive conversation about the care of your aging parents. Gentle communication from all of you could be just what your parents need to begin thinking about what they want to do.
Involve your parents’ physician if necessary.
Sometimes, no one is sure what they want. It’s an overwhelming thing to think about, and if your parents were never in a position to take care of aging parents, they might not know what to think.
This is when it’s a good idea to draw from a trusted physician’s experience, particularly if he or she is a longtime doctor with personal knowledge of your parents’ spiritual beliefs. We’ll go into some other reasons why it’s important to make sure your parents have these discussions with their physicians a little later in this article.
We’ve Decided to Take Action. Where Do We Go From Here?
You’ve had the discussion about your aging parent’s end-of-life care plan. You’ve gotten agreement from everyone that this should be addressed sooner rather than later, and your parents have had time to reflect on their thoughts and feelings. It’s time to decide what they want and what to do about it.
Establish preferences for palliative care, potential hospitalizations, and more.
Which emergency room would they rather go to? In case they become critically ill and can’t speak for themselves, what sorts of treatments and resources do your aging parents want to utilize? What don’t they want?
Find out their wishes and document them, specifically for things like invasive care, hospice, and palliative care, to be prepared for whatever arises.
With the rise of COVID, many people have changed their minds about their wishes concerning using a ventilator. Get your parents updated thoughts on whether they’d want to utilize a ventilator if they became suddenly ill.
How long would they want to stay on it if there were no signs of improvement? Suppose they decide to discontinue the use of the ventilator. Would they prefer to contribute their ventilator to another patient in the event of a shortage?
If they feel more comfortable communicating with their physician about the potential risks and benefits of using a ventilator before deciding, encourage them to do so. Also, since what we know about the effectiveness of using a ventilator for COVID-19 treatment changes regularly, remind them that they can change their documented preferences at any time.
Document their wishes with an advance directive form.
The advance directive form is a legally binding document, often requiring witnesses and sometimes a notary, to make it official. It contains checkboxes with questions about things like what kind of treatments and interventions they’d want, such as feeding tubes, resuscitation, or life-support systems.
The questions and content of advance directive forms differ from state to state. AARP offers a free comprehensive list of advance directive forms created by the National Hospice and Palliative Care Organization. They also provide other important resources for aging parents.
The advance directive form helps you and your loved ones understand what your aging parent’s preferences are, but it also helps their physician. It’s imperative to ensure your parents and their physician align ethically with a treatment plan.
Encourage your aging parents to take as much control as possible of their care.
While the advance directive form aims to communicate your parents’ wishes as simply and clearly as possible, it’s not a completely unambiguous document.
Ask them to think their wishes through carefully, document them clearly and thoroughly, and narratively communicate them.
For instance: “If I’ll lose the ability to interact with my family permanently, I would rather be made comfortable and discontinue assistance from life support.”
Specific, straightforward verbiage like this can make a huge difference, mainly because unpredictable complications are common when dealing with an end-of-life care situation for aging parents. This can cause confusion and stress at a time when focusing on giving your parents the best possible care is the priority.
Ask them to designate multiple proxies or surrogates.
Naming more than one proxy (or health care agent or surrogate) for supporting your aging parent’s end-of-life care plan is a good idea. If whomever they put first on the list can’t make choices for them in the event of illness or death, they’ve got their bases covered.
Just as they should be prepared to designate more than one proxy, you should ask if there’s anyone whose involvement they would not want to make decisions on their behalf.
Most families have that one person that just seems to show up whenever stuff like that arises, and they’re usually the last person you want to see. Most likely, there won’t be a specific box to check on their advance directive form for this, but it’s completely legal (and prudent) to write it in any way.
Keep in mind, that even though designated health care agents are permitted to speak on their behalf, your parents’ completed advance directive takes precedence.
This is important on a couple of levels. Suppose your aging parent’s end-of-life care plan remains updated, clear, and communicated. In that case, it eliminates the stress and suffering of potential disagreements among the family.
Also, it provides directions to their physician that these are their wishes. If they deviate from that legal document, they can face liability.
Your parents should communicate with the family about any changes they decide to make on their advance directive. Sharing the reasons for those changes will also help everyone make more informed decisions on their behalf later if necessary.
A Final Word or Two
The trend of thinking about one’s aging parent’s end-of-life care plan has seen a dramatic uptick during the coronavirus pandemic, but perhaps the focus is far overdue. Many of us get so caught up in the whirlwind that is life, that we forget to think about our loved ones’ well-being in our absence.
It’s not a topic to be taken lightly, but consider that a conversation about what will happen if we become ill or die can remind us how grateful we are to be with our loved ones.
Supporting and encouraging your aging parents to communicate with you about their end-of-life care plan is also a conversation about what they love about their lives right now.
No matter what your stage of life, that’s always a conversation worth having.