Yesterday I did a webinar with Family Caregiver Alliance, on end-of-life issues for dementia caregivers.
(4/10/14: I have just uploaded this powerpoint to Slideshare, so you can see my slides here.)
As you can imagine, this is a big topic that can’t be covered comprehensively in an hour.
So, I focused the talk mainly on something that I often find myself wishing families had spent more time on: advance care planning. Specifically, I talked about how individuals and families can approach planning for future medical care, in the context of a diagnosis of Alzheimer’s or another form of dementia.
Why? Because in my own experience, the last stage of life for a person with dementia is often strongly influenced by what kind of planning did — or didn’t — happen earlier on.
In the webinar, we talked in depth about planning not just for the moment of death, but also for the last months or even years. After all, many older people — especially those with dementia — experience a period of declining health before dying.
Although this last stage is never easy for families to go through, and it’s never possible to plan ahead for every healthcare twist that lies ahead, it IS possible to have — and document — thoughtful conversations that can later help guide family caregivers and doctors.
In this post, I’ll describe two online resources that individuals and caregivers can use to help with planning. I also have links below to my favorite California Advance Directive form as well as to California’s POLST site; these are two resources I rely on a lot in my own practice.
Note: the resources below are not specific to planning in the context of dementia. For information specific to dementia, consider the Alzheimer’s Association End-of-Life Decisions Brochure.
This is a great website that takes a person step-by-step through a process of thinking through some key questions, such as:
- How to choose a medical decision-maker?
- How to decide on what matters most in life?
- How much flexibility to give your decision-maker?
- How to tell others about your wishes?
- How to ask doctors the right questions about your medical care?
For each of these issues, PREPARE provides clear guidance through text and short videos. PREPARE also helps users prepare a printable action plan.
PREPARE is not meant to create an advance directive or living will. Instead, PREPARE is meant to help people through the process of thinking and talking, so that they can later feel prepared to complete an advance directive.
I like PREPARE because it’s very clear, and because its creator, geriatrician Dr. Rebecca Sudore, user-tested it with a diverse group of older adults.
The Conversation Project: TheConversationProject.org
This is another online resource that I believe can be helpful to many older adults. It’s meant to help people and families have those conversations about end-of-life care, and what a person might prefer in the event of a medical crisis.
The website includes a handy “Starter Kit,” which can be printed out and completed without a computer. Some of the issues that the Starter Kit helps people address include:
- How to feel ready to have the conversation.
- What matters most in life, and what would matter most at the end-of-life
- How much a person wants to know in a crisis, how involved he or she wants to be in the decision-making, and how involved he or she wants family to be in the decision-making
- How a person feels about length of life versus quality of life
- What are the three most important things a person wants friends, family, or doctors to know about end-of-life care
- How to take steps to get a conversation started
- How to move forward with documenting preferences in an advance directive or living will.
Easy-to-use California Advance Directive (from the Institute for Healthcare Advancement)
This is the form that I usually give to patients and families. It is written in plain, clear English, and does a nice job of making a legal document simple.
The form helps people do the following:
- Understand what a health care agent is, and what kind of decisions he/she may need to make
- Understand what will happen if no health care agent is chosen
- Document who a person wants to appoint as health care agent
- Share some key feelings and values related to end-of-life care
- Have the form signed in a way that makes it a legal advance directive
Like PREPARE above, the Easy California Advance Directive was also created by Dr. Rebecca Sudore. (Her work is terrific!)
POLST (which means “Physician Orders for Life Sustaining Treatment”) is a bright pink paper that is meant to quickly summarize key information regarding a person’s preferences in the event of medical emergency.
I tell families that it’s similar to a pre-hospital DNR (Do Not Resuscitate) but better for two key reasons:
- You don’t have to be DNR to use it; you can still use it to communicate important information regarding the type of medical care a person prefers if there’s an emergency.
- POLST can share information beyond whether or not a person is DNR. Specifically, California’s POLST allows people to document the intensity of life-sustaining medical care that is preferred. This can include preferences related to being hospitalized or to life support.
POLST is meant to complement an advance directive, not to replace it. POLST should also only be completed after patients, families, and doctors have a thoughtful conversation reviewing a person’s medical situation, along with preferences and values.
For more on POLST, see my post “POLST: Resources & Tips on Avoiding Pitfalls.”
You can also find links to other related articles on our Advance Care Planning & End-of-Life topic page.
Have you done some advance care planning, or helped anyone with planning for serious illness or death? What tools did you find helpful?
Dear Dr. Kernisan,
Thank you so very much for the thoughtful, thorough, life giving information and help. I cannot begin to tell you how good it feels to have your guidance and resources available. The language and format you use makes it easy instead of harder for a sometimes stressed out, frightened, frustrated and exhausted caregiver to find hope and help.
Your website is almost too good to be true! You’re speaking my language as you make so much sense of the science while you hold most valuable the human factor. I actually feel as if I have an advocate on my side informing, encouraging and enabling me to better care for, protect and honor my mother who has Alzheimers.
I’ve reviewed the slides from this webinar. I wonder if the fuller text is available somewhere. I am especially interested in planning for the years of decline my mother may experience before her actual last moments near death. It’s hard to imagine this possibility and I need help facing the (to me) not so obvious. I am sure I read in more detail somewhere a discussion of this and I have been researching your site for hours again in an effort to find the original article which triggered my interest but I haven’t found it.
In the meantime, you referred me to more wonderful information in an earlier comment elsewhere so thank you for that. I never leave without learning something useful (and feeling good too!) It helps me feel stable and sane as I collaborate with my mother’s doctors about her care. In several instances, I have helped them better help her because of your generous sharing. Your information on delirium, dehydration and UTI’s have been some of our focus and have saved the day.
One year ago, Mom was raging and panic stricken. She was being dismissed as “sundowning” and “that’s just the disease”. I don’t dispute the condition but I found people were too easy to label Mom and go on their way. Being educated by your site, I discovered other factors were at the root of her behavior and, once managed, my mother has not suffered like she did. I know this is not everyone’s story but it seems to me there are opportunities to improve the care we give just by knowing there are options and exploring them.
My mother and her behaviors would still probably be misunderstood and relegated to an Alzheimers label (which in itself is, unfortunately, mostly misunderstood) if it wasn’t for your efforts. So, I hope you know that what you’re doing to tie so much great stuff together is a very vital work.
I am both amazed and delighted! May God continue to bless you! Thank you again….
Leslie Kernisan, MD MPH says
Thank you for this lovely detailed comment! I’m delighted to know that the information here has been so helpful.
Unfortunately, I don’t have fuller text currently available for the slides on end-of-life planning in Alzheimer’s. But this is an important topic you are raising, so I will put in on my list of issues to address in the next few months (either as article or podcast episode).
Please let us know if/when you find some resources that are especially helpful for this Alzheimer’s end of life planning!
Many thanks for your post.
Jim Tracy says
I think it can be a really good idea to have a life plan set up from a young age. It can really make a lot of difference to plan things out. It doesn’t ever hurt to be prepared.
Julia Carlson says
I’m so glad you decided to focus your speech and article on advance care planning. I always get so stressed when it comes to planning my future, but it’s something I need to do. I’ll have to check out these websites and see how much more I can learn from them. You’ve really helped me see how important it is to plan for my future now. I think I’m going to have to make that a resolution of mine.