End of Life Planning
As a society, we don’t talk enough about death and yet it’s the one thing we all have in common – the one thing we are all guaranteed. End of life planning is a part of caregiving and it’s one of the aspects you can do some planning in advance. You’ll be glad you did.
To start: Download our End of Life planning document. Fill this out after you read through this guide.
This guide starts with how to have difficult conversations with your parents – we know it can be very sensitive and stressful to bring up end of life topics. Then it moves onto:
- The Documents You Need to Care for a Parent Toward Their End-of-Life
- Some Great Resources for Working Daughters
7 Strategies for Broaching Uncomfortable Conversations with Your Parents
1. Understand it’s a process.
“The conversation” is actually a series of conversations. Don’t expect to visit your parents one afternoon, or to go home for the holidays, suggest that Mom or Dad or your Great Aunt Gracie can no longer live independently, and get them to say, “You’re so right. Let’s make a move.” Don’t try to cram the conversation in when you stop into visit them on your way home from work. And definitely don’t bring up sensitive subjects when you have looming deadlines at the office, or a big project due to your boss at the end of the week. Important issues are rarely resolved through one conversation.
2. Flip the dynamic.
Some of us resist future-planning with our parents because we think it requires us to bring up potentially difficult or unpleasant conversations. We worry if we bring up their finances, they might think we’re angling for inheritance. We don’t want to raise the need for an advanced directive, a document outlining medical wishes for intervention, because who wants to talk about illness and dying? We think if we suggest their home is no longer the best place for them, we are forcing them to acknowledge that they are failing.
So rather than raising these issues, ask your parents to share their vision for their future with you. Ask them what matters most to them in the next phase of their life. Is it independence? Leaving money to their grandchildren? The best medical care they can receive? Spending time with family? What are their values at this point in their life? A conversation about what someone wants is much more positive and optimistic than a conversation about what someone may no longer be able to do.
3. Listen first.
What are you hearing and how can you address it? If your parents want to age at home, what will make that a reality? Will they need help with shopping and driving? Will they need a visiting nurse or home health aide? Or maybe they tell you they won’t to be a burden to their children. Okay, what does that look like – for both of you. Would moving them closer to you help? Would hiring a housecleaner help? Are they resistant to those ideas? Then what are some other approaches? And if they shut the conversation down, remember it’s a process. Back off and revisit the discussion at a later date.
4. Go for small wins.
Consider if there are small steps you can take to advance the conversation. Rather than aiming for, “Hey mom, I think it’s time for you to move into assisted living,” try “Mom, Aunt June just moved into Sunset Studios. I hear it’s really nice. Want to stop by, see her, and check it out?” Your mother might agree but add, “Sure but don’t think I’m ever going to a place like that.” Let it go. Celebrate the small win. She agreed to see the place, didn’t she? Every conversation you have on this topic will help you and your parent get more comfortable addressing how to face the next phase of their life. Maybe you think your parents should give you power of attorney, authorization to represent them or act on their behalf in financial, medical and legal issues, but they aren’t comfortable with that. Will they at least add you to their bank account so you can help with bill paying if needed, or name you as their healthcare proxy so you can speak with their doctors? Baby steps are still progress.
5. Get the facts.
If you can enter the conversation with knowledge of your parents’ financial information, do it. The more data you have, the better you’ll be able to address their fears and concerns. Likewise, if you’re talking about a possible move, gather information about what facilities are available, which ones have openings, and how much they cost. Have the facts but present them as options.
6. Value autonomy as well as safety.
Maybe you think your parent should move or accept in-home assistance because you are concerned about their safety. And maybe, like my father who insisted on renewing his license and climbing ladders to clean his gutter in his mid 80s, your parents value their freedom over their safety. Go ahead and tell them why you are concerned and how their decisions might impact you. “If you fall off the ladder and get hurt, I will have to take time off of work to care for you.” But remember you are dealing with an adult and ultimately the decision is theirs.
7. Fill in the gaps.
Understanding that some family dynamics make these kinds of discussions impossible – you and your parents may be estranged, your father would never talk about his feelings and goals, your parents have already declined past the point where they could have a meaningful discussion – you may have to make some assumptions and decisions on your own. If that is the case, ask yourself these 4 questions and use the answers to guide you.
1. What do I know about my parents that will help inform my decision-making?
2. Based on how my parents have lived their life, what do I think they value most?
3. What do I believe is best for my parents?
4. What do I believe is best for me as a caregiver?
Remember, If the idea of talking to your parents about their funeral makes you uncomfortable, you are not alone. Americans in general are uncomfortable even thinking about death. Some possible conversation starters are, “I hope you know this is the last thing I want to face but,” or, “It is important to me that I honor your wishes. Can we talk about…,” or, “I hope you don’t mind me asking, but is there anything I need to know about your end of life wishes or plans?” Proceed with equal parts courage and compassion – you’ve got this.
The Documents You Need to Care for a Parent Toward End of Life
Keep copies of all of this information in three different places: your home, your office and your glove compartment. That way, if you are taking your parent to the doctor, or if there is an emergency, no matter where you are, you will have what you need. Take pictures of insurance cards, medication lists, any current lab results, etc. and keep them on your smart phone as backup. Download our medication list tracker HERE.
(Also known as a Durable Medical Power of Attorney) Your parents should each designate one person to be their health care proxy. This person, often the primary caregiver, has the authority to make medical decisions for a patient in the event they are unable to.
Some people have a proxy statement prepared by an attorney while others complete a form at their doctor’s office or at the hospital. Most proxies require at least two witnesses to sign them, but requirements vary state by state. Also proxies can be changed, so if, for example, your parent names someone who can no longer fulfill the role, they can assign someone else. When you are a proxy doctors will share information with you.
If you are not the proxy, doctors are not allowed to discuss a patient’s medical issues with you due to the Health Insurance Portability and Accountability Act of 1996, commonly known as HIPAA. Some hospitals only recognize a proxy form completed at their facility and some only accept original copies. Therefore, if you are your parent’s proxy, always keep your original form as well as a few copies with you. Do not trust that a hospital or medical practice shares proxy information across different departments. Without this document you cannot speak or make medical decisions for your parent.
An advanced directive, sometimes referred to as a living will or physician orders for life-sustaining treatment (POLST), clearly spells out what, if any, medical intervention your parent wants to receive in certain medical situations, in the event they cannot communicate their preference.
In some states, a patient can complete an advanced directive with their primary care physician. These directives cover whether or not a patient would want a feeding tube, for example, if they were unable to eat, or the use of life sustaining treatments such as ventilators, and heart-lung machines. Patients can update these directives if their wishes change.
Advanced directives may be unpleasant to think about and discuss, but they can provide clarity and peace of mind for a caregiver in a difficult situation. If your parents are very ill, consider posting their advanced directive above their bed so nursing home staff, EMTs, or other responders will see it during an emergency. Also keep a copy on the refrigerator. EMTs are trained to look there.
DNR stands for Do Not Resuscitate. This can be a doctor’s order or a legal document that tells medical staff not to perform cardiopulmonary resuscitation (CPR) or advanced cardiac life support in the event a patient stops breathing or their heart stops.
A DNR can be part of an advanced directive or a person could opt to have just a DNR without an advanced directive. You may hear the term, “Allow Natural Death” in place of DNR. Some medical professionals are advocating the use of this phrase in place of DNR as it better defines the decision a patient and/or their proxy is making.
Organ donor documentation
If your parent wants to donate their organs, make sure you know where they keep their organ donor card and/or that they have noted their intent on their driver’s license.
Great End of Life Resources
Exclusive Interview: Suelin Chen Founder of Cake
Cake is an online platform for helping people navigate mortality. ,With over 2,000 articles and interactive planning tools, Cake is a one-stop-shop for all aspects of death and end-of-life including healthcare, funerals, financial and legal concerns, making meaning in your life, and curating your digital legacy. Click below for our members-only interview about end-of-life planning.