End of Life Planning
End of Life Planning was the exploration of the month at several 2019 Longevity Explorer circles.
If you are thinking some end of life planning might be timely, either for you or for a family member, and are unsure what you need to worry about, read this.
And if you are not too sure what end of life planning even means — but have heard terms like advance directive, healthcare power of attorney, POLST form, MOLST form, living will, and fiduciary — this article will explain what these terms mean, why you need things like this, and how to get them.
In this synthesis we combine the learnings of the explorers, and the inputs from several "expert speakers", and some additional research from the Tech-enhanced Life team.
The goal: turn the hours of discussions and learnings and research by our explorer community into a concise roadmap to end of life planning, with connections to the best available resources & tools on the internet to help make this daunting process as easy and stress-free as possible.
As our explorer discussions took place across multiple circles, it became clear that there were really two big "buckets" into which most End of Life Planning issues were grouped:
- End of Life "Care Planning"; and
- Tidying your Affairs & Legacy
End of Life "Care Planning"
The first "bucket" of topics related to the healthcare system, care at end of life, and the type of "end of life" you personally would like to experience. The conversation was about making sure you get the sort of care you want as you near the end of life — not too much, and not too little. And especially how to be sure this happens even if you are not in a position to make decisions for yourself.
Tidying your Affairs and Legacy
The second "bucket" of topics was about the legacy you leave, tidying up your affairs, and not wanting to "be a burden" to others. This included two big subcategories:
- Tidying up your affairs in advance so you don't leave a big mess for your friends and family;
- What you leave behind, and how people will remember you: your legacy.
Listening to the Discussions
Our explorer discussions, and this synthesis, cover both of these two big "topic buckets".
We want to expecially acknowledge an excellent series of expert speaker talks organized by the Providence Longevity Explorer circle, which are among the discussions you can listen to in their entirety (Having the Conversation, and MOLST).
The audio recordings of the explorer discussions are attached (on the right for big screens, below for small screens), so you can listen to the entire discussions in which all these topic areas are discussed.
Planning the End of Life You Want
Why You Should Care
While many of us would prefer not to think about the end of life, consider for a minute questions like these:
- Would I want to die in a hospital or at home?
- Do I want extreme life sustaining measures at the end or not?
- If I can't make decisions about the treatment I want, who should decide on my behalf?
- What happens to all my "stuff" after I am gone?
- Will tidying my affairs be a huge burden on my family and friends?
- How will people remember me?
- Did I "make a difference" in my time on earth?
Planning in Advance
Most of our explorers care about at least one of the questions above, and you probably do too.
The problem is that if you wait to think about these questions until the last minute, it may well be too late to tell anyone what you want. Hence the need for "end of life planning".
The idea is to think things through in advance, document what you want, and share your views with those who will be impacted and can help make things happen the way you want.
Decide then Document
For each of the three areas of end of life planning (end of life care; tidying your affairs; legacy), the planning process boils down to two steps:
Step 1: Understand the choices, and make some decisions;
Step 2: Document and communicate what you want — usually in the form of some specific documents others have developed for the purpose.
While making the decisions and communicating them is the essential first step, unless you capture the decisions in a set of appropriate documents it turns out all that thinking and deciding might be wasted. Because the legal system and the healthcare system are inevitably involved with what happens at the end of life, and unless there is the right paperwork, you don't get what you want.
So, ... a good way to approach this is first to understand what the outputs need to look like, and then take a step back and think about making the right decisions, so you can fill out the documents appropriately.
The good news is that there is quite a lot of educational material out there to support this whole process, and a number of organizations that have put a lot of work into making the process of learning, deciding, and documenting as easy as possible. We identify below those we have found to be especially helpful.
Scroll down to the section on "Getting the End of Life You Want" to see what we learned about exactly how to learn about and then make these choices, and where to find the resources to make that easy. But first, we think you need to understand the various "documents" that are used to document what you decide you want.
End of Life Care Planning Documents
In our explorer discussions, many people were unclear about this part. Here is what we learned.
There are two types of care planning documents you need to worry about.
- The first is a family of documents that fall under the umbrella term of advance healthcare directives.
- The second is a type of document called a "Physician Order".
Understanding these documents is complicated by the fact that there are many different names for different versions of these documents. So the terminology is confusing. See below for some more details.
Our conclusions were that every adult should probably have some type of advance healthcare directive, regardless of age or stage of life. In contrast, a Physician Order is appropriate for people who are approaching the end of life, but not for everyone.
Advance Healthcare Directive: What is it?
Wikipedia has a good overview of advance directives, their history, and the various subcategories of advance directive (1). Here is our shorter summary.
The three main purposes of an advance directive are:
- nominate a person who you want to make healthcare-related decisions on your behalf (for example when you can no longer make them for yourself);
- leave specific instructions for how you would like to be treated (or not) in some specific situations (eg do you want a feeding tube; do you want to be on a ventilator);
- share your specific values and "wishes" regarding some less concrete aspects of how you wish your end of life to unfold (for example spiritual and emotional aspects).
Sometimes also covered under this category of advance directives are any wishes you may have regarding donation of organs or tissue.
Advance Directives are legal documents, and the exact form of an Advance Directive document varies from state to state in the USA, and also from country to country.
We go into more detail about where to find the right advance directive for your geography, and how to get help completing such documents, and the best resources to help make the underlying decisions relating to advance documents in Advance Directives: Forms, Apps, and Online Guides.
Terminology: Advance Directives, Living Wills, Healthcare Power of Attorney
An Advance Healthcare Directive may also be called a Personal Directive, Advance Directive, Medical Directive, or Advance Decision.
Living Wills, and Healthcare Powers of Attorney, are specific types of Advance Directive.
Healthcare Power of Attorney
A "Healthcare Power of Attorney" ("Durable Power of Attorney for Healthcare", "Health Proxy") is a type of Advance Directive which nominates a specific individual to make healthcare decisions on your behalf.
A "Living Will" is a type of Advance Directive which specifies how you want to be treated in various specific situations if you are not able to speak for yourself at the time.
All-in-one Advance Directive
As we explored this topic (in late 2019), it became clear that a very common approach is to combine both the Healthcare Power of Attorney and the Living Will into a single document — known simply as an Advance Directive. This may or may not include the spiritual and emotional aspects of things.
You might think that creating an advance directive and nominating a person to make decisions on your behalf would be the end of it. But organizations that think deeply about these things (professional bodies of doctors, lawyers, and policy makers) decided there was a need for something else in addition.
That "something more" is a specific Physician Order to govern exactly what happens in certain end of life treatment scenarios.
The Physician Order is a document, and is called a variety of things in different places — most commonly a POLST form or MOLST form (also MOST, POST or TPOPP) (2).
The POLST / MOLST form (Physician Order) arises from a discussion between you and your doctor. It is signed by the doctor (quite a different concept than an advance directive that you develop with your friends, family, or maybe a lawyer).
The key aspects of these Physician Orders seem to be that they are more precise than many advance directives, and also that they are in a form that will readily be followed and adopted by the medical community.
Much of the POLST / MOLST form deals with treatments you do NOT want (such as "Do Not Resuscitate"). The advice of the experts who talked with our explorers was that these forms are usually not appropriate unless you are reaching the end of your life, but that at that point they are extremely desirable.
We expand on this section, and go into more more detail about these forms in POLST and MOLST: Physician Orders.
For an excellent introduction to the topic of Physician Orders listen to this presentation to the Providence Longevity Explorer circle on the MOLST form, which is what these Physician Orders are called in Rhode Island.
Documents for Tidying your Affairs and Legacy
When it came to the aspects of end of life that focus on tidying up your affairs and not being a burden, and the topic of legacy, it became clear that yet more documents were required.
Most of these are the documents that fit into the category of estate planing. They include a Will, and perhaps some Living Trusts and other legal instruments, that govern how your estate will be handled after your death, who will wind up your affairs, and who will end up owning your assets. These are all beyond the scope of this article (consult a good lawyer).
There is also a (conventional) Power of Attorney, which is a very powerful document that can designate another person as having control of your various affairs to a greater or lesser degree at a certain point in time.
Among our explorers there was some confusion about whether a general Power of Attorney was the same or different to the Healthcare Power of Attorney mentioned above, and the answer is that these are two quite distinct documents. A Healthcare Power of Attorney is a specific type of Power of Attorney, and distinct from the general Power of Attorney that covers who has power over things like your finances.
Getting the End of Life You Want
The trouble with approaching the end of life is that sooner or later, you are no longer in control. So if you have views as to how you hope things will unfold, you do need to prepare in advance if you want your end of life to be the one you want.
Who is Your Advocate?
As you near the end of life, there are lots of people and organizations who get involved in thinking about how your care will be managed. Physicians, nurses, hospital administrators, insurance companies, and maybe even the government, all have views about it. And often the choices are not black and white.
As our explorers see it, the big question is:
"Who do you want to be making decisions on your behalf, and with what guiding principles?"
Clearly, if you don't think about this in advance, this is likely to be out of your control.
Using a Healthcare Power of Attorney, you get to decide who that advocate will be. It's important to pick the right person. Maybe several people. They need to be people you trust will act with your best interests at heart. And people you can talk to in advance about what you want, and your values.
In researching this article we discovered several really excellent online resources designed to help you think about choosing an advocate (healthcare proxy) and completing an Advance Healthcare Directive. We recommend using these resources to guide your thinking (see Getting Help. Where to Start, below).
Several of our explorers raised the issue of who would be your advocate when you "don't have anyone". The answer to this was to retain what is called a Professional Fiduciary. You can learn more about what a Professional Fiduciary is, and when and why you might want one in this article: A Professional Fiduciary: What is it? Do you need one?
Another common question was "What if my child lives out of state? Can they still be my healthcare advocate?" The consensus was that they could. As one person said: "there is always the telephone."
Ensuring the Healthcare System Follows Your Wishes
Having an Advance Directive, thinking through the choices and making them, and discussing things with your advocate / healthcare proxy and with your family are all "necessary" steps. But to make sure the healthcare system actually follows your wishes, there are some extra things to worry about.
You need to make sure that in an emergency the healthcare system, and your family, have access to all these documents (eg the Advance Directive / Healthcare Power of Attorney). If they are carefully locked away in your safe deposit box (which was the case for many of our explorers), that may be a problem. The experts who spoke with our explorers emphasized discussing the contents of these documents with your primary care physician and with your family and especially with the person you designated to make decisions on your behalf. And to be sure all those people had a copy of the Advance Directive.
There are some interesting initiatives to make advance directives more easily accessible by storing them online, that we plan to investigate more fully. If you have insights into these, feel free to add comments at the bottom.
Apparently, conflict among family members as to how a relative will be treated in an end of life situation is common. That's not surprising. Decisions like when or whether to withhold care are controversial.
So, if you want things to unfold as you prefer, it is important to pick as your healthcare proxy / advocate one or more people who you trust to follow your preferences. And then to be sure they have the authority to prevail in the case of conflict, by making sure the healthcare power of attorney is completed appropriately.
Among the topics the Longevity Explorers discussed during our sessions on End of Life planning was the topic of assisted suicide. This is a big topic, and we don't try and delve into it in this synthesis. You can see an example of discussions about this topic by the explorers here.
Getting Help. Where to Start?
We found some great resources, designed to hold your hand as you step through the process of deciding what your end of life should ideally be like, and then documenting that, and communicating it.
They cover some of the issues (like chosing an advocate) in much more depth than we have here. Most of them deal with End of Life Care Planning. We have gone into more detail about these resources in Advance Directives: Forms, Apps, and Online Guides.
Most of these resources provide advice about how to make decisions, and in addition allow you to create your own Advance Directive using either a downloadable form or an online form.
Resources we especially want to mention are:
These links go to our "resource listings" where you can learn more about these resources, and find links to the resources themselves. For description and comparison of these resources see our Advance Directives: Forms, Apps, and Online Guides.
Tidying Your Affairs & Legacy
Many of our explorers mentioned that they badly wanted to avoid "being a burden" to others at the end of their lives. This took a variety of forms. For more details, we encourage you to listen to the audio recordings themselves, but generally these were the things people brought up.
Getting one's financial affairs in order, thinking about who will be your heirs, and documenting that in the form of living trusts and wills, was something many cared about, and most felt they already had under control. So, there were not a lot of surprises in this part of the conversation.
It is pretty common for people to have less than pleasant memories of what happened when their parents passed away, and they were faced with a house stuffed with things that they had to sort through, and make decisions about.
Because of this, and because of the current fashion for "de-cluttering", quite a few of our explorers are implementing plans to get rid of lots of things, and generally tidy up their affairs.
Things that came up:
- sorting through piles of old paper records and deleting those no longer relevant;
- giving away those heirlooms that you care about but none of your heirs care about;
- emptying out the storage room you have had for thirty years in case the stuff in there "might come in handy"; and
- organizing records so your family knows where things are and what they mean.
Who will care for your pet when you are gone? For single pet owners, this is a question that looms large. Explorers mentioned several solutions. For example, a local SPCA has a program to find new owners for pets of people who pass away, and you can sign up for this in advance.
There were several discussion segments about funerals, covering things like these.
- How will your family know what sort of funeral you would like? Will you be cremated, buried, or something else? Will there be a wake?
- In multi-cultural families, which cultural traditions will apply to your passing, and how will your family even know what those traditions might be?
- Can you prepay for funerals, so your heirs are not stressed out about it? (Yes you can).
Some explorers have donated their bodies to science, and felt this combined "doing good" with a very low stress way of dealing with "what happens after passing".
Legacy: What You Leave Behind
We had several lengthy discussions about "legacy". They were a chance for people to explore this issue, but they did not really converge.
The explorers had many different opinions about what "legacy" even involved.
For some, it was about what knowledge, insights, and values you passed on to your friends and family. For some it was about the material things you left for others. Some mentioned the impact your life may have had on others.
For more about these topics, listen to the individual audio recordings, and feel free to add your views in the comment section below.
Learn More & References
(1) Wikipedia: Advance Directives
(2) Wikipedia: POLST, MOLST etc
(3) US National Library of Medicine (Medline): Advance Directives
(4) National Institute on Aging: Advance Care Planning: Healthcare Directives
(5) AARP: "State-specific downloadable Advance Directive Forms" (from CaringInfo.org)
(6) American Bar Association: "Advance Care Planning Toolkit"
(8) Center for Practical Bioethics: Caring Conversations
Discuss, Comment, Ask Questions
Comments, Questions, Discussion
from Reshma (unverified) at Oct 3 2019 - 12:59pm
Totally agree that early "end-of-life planning" is the key to ensuring that we can have the kind of "old age" we aspire to. However, we have found that getting people to engage in this kind of planning is really hard, for a variety of reasons:
1) too many interconnected topics to think about (health, finances, living arrangments, legal paperwork, family dynamics etc)
2) most topics are complex and often require the help of subject-matter experts like attorneys, financial planners, insurance brokers etc.
3) addressing the pertinent issues often requires having difficult conversations with loved ones
4) thinking about one's own "end-of-life" is depressing
5) the planning doesn't seem "urgent" so it's easy to procrastinate.
I'd love to understand from your longevity explorers what they think is the "messaging" that did/would motivate them to engage in early, thorough "end-of-life" planning? I feel the first thing we have to do is not call it "end-of-life planning" :-)
from Tomonthebeach (member) at Oct 1 2019 - 2:22pm
One thing omitted in this report is to visit several progressive living, assisted living, and nursing home facilities in your area - right now - while you are still mobile. Once in a wheelchair or recovering from a stroke (maybe even blind) it is too late to shop, and you get what fate gives you. If you know where you want to live next once you need help getting into bed, bathing, etc. you can put it in an advanced directive. It is best to visit several, join residents for lunch or dinner, and chat them up to see how they like it there. Choose the wrong place, and the stress and cost of shopping and relocating might trap you in a less-desireable environment.