POLST: Resources & Tips on Avoiding Pitfalls

In this post —  the last in a 4-part series on better planning for health crises and end-of-life care — I want to tell you about a document that I wish more families knew about: POLST.

POLST (which stands for Physician Orders for Life-Sustaining Treatment) is a legal document meant to tell healthcare professionals what you want done, in the event of a medical emergency. It’s kind of like a pre-hospital DNR (do-not-resuscitate), but much much better. (For starters, you don’t have to be DNR to use a POLST form.)

Note that POLST is not an advance directive, although when doctors ask if there is an advance directive, they are often thinking of POLST as well. (Because what they are really asking is, is there any pre-existing documentation that can help us understand what we should and shouldn’t do?)

And it’s not a perfect approach to making sure older adults get the care they want and need, when a health crisis hits. If you have heard of POLST, you may very well have heard some negative things; I’ve certainly heard some complaints over the years about POLST forms, or about how something didn’t quite work out despite the presence of a POLST.

Still, I really like POLST, and discuss POLST forms with many of the older adults and families that I work with. In California, POLST has largely replaced the pre-hospital DNR forms that some older adults used to have.

Furthermore, a study published in 2014 confirmed that in Oregon, where the POLST approach was first pioneered, POLST forms have helped get end-of-life wishes honored more often. (The New Old Age Blog published a related post recently, titled “When Advance Directives Are Ignored.”)

If you’re caring for a frail older person and you live in one of the many states with a POLST program — click here to find out if your state has POLST — I highly recommend you incorporate this tool into your loved one’s advance care planning. In most cases, a surrogate medical decision-maker can complete a POLST form.

In this post, I’ll share some resources on learning to use POLST to better plan for health crises and end-of-life care.

I’ll also offer some tips on avoiding common pitfalls, such as completing POLST without first addressing the learning and conversing parts of advance care planning.

Note: Some states have chosen a different name when they implement POLST. Alternative names include MOLST (Medical Orders for Life-Sustaining Care), MOST (Medical Orders for Scope of Treatment), or POST (Physician Orders for Scope of Treatment).

Useful Resources About POLST

Here are some useful links for older adults and family caregivers:

• POLST.org: This site explains the “POLST paradigm.” It includes a section for patients and families, and also has resources for professionals who might want to develop POLST in their own state. It does not have a sample POLST form, because those have to be developed by each state individually. If you want to find out if your state has a POLST program, or is planning a POLST program, be sure to check the state directory feature.
• POLST California: This site is most useful for older adults and families in California, but the basic information about POLST is well-written and should be useful to people from other states. I like that it’s easy to view the actual POLST form (click the link in the lower part of the main home page). I also like their printable POLST guides, which are available in English, Spanish, and Chinese.

• “POLST: An improvement over traditional advance directives”: For those who enjoy a more in-depth resource, this is a scholarly article written to explain POLST to healthcare professionals. It seems to be freely available to the public and does a very nice job of explaining how POLST compares to traditional advance directives. I especially like that the author (a geriatrician) emphasizes the need for shared, informed medical decision-making as part of the POLST process.

• “A Final Prescription“: This is a 2010 New Old Age Blog post describing POLST. It provides some good examples of situations in which POLST can help aging adults facing a health crisis.

Common POLST pitfalls, and how to avoid them

Here are some of the problems that I’ve seen occur with POLST, and how you might be able to avoid them.

Bear in mind that POLST is developed and regulated by each state individually, and that most POLST programs are relatively new to those states that have them. (California’s POLST was first implemented in 2009.) So, some of these problems are undoubtedly related to “growing pains” in implementing POLST, or even in skillfully addressing end-of-life issues with patients and families.

• Pitfall: Signing POLST without adequate conversation and input from clinicians.

I’ve seen this happen in a variety of ways. Sometimes it’s because a residential facility strongly encourages a family to complete a POLST, but they don’t help arrange for the older adult and family to discuss with a suitable clinician. In other cases, I’ve heard of families asking their primary care doctors about POLST, only to be given the form and told to complete it on their own. (Unlike an advance directive, POLST must be signed by a healthcare professional.)

How to avoid: Insist on having a conversation with a qualified clinician, before signing a POLST form. A good approach is to review the basics of advance care planning first (see below). That way you’ll be better prepared to discuss with the doctors. If your doctor is unwilling to discuss POLST, or is struggling to help you with advance care planning, try to find a clinician trained to discuss end-of-life planning, such as a geriatrician or palliative care doctor.

For the basics on advance care planning, see this post.  You can also review my Slideshare presentation below. Like an advance directive, a POLST will best serve you if it’s completed after you’ve gone through a process of education (what is the health situation? what crises are likely to come up?), reflection (what are my loved one’s values and preferences?), and conversation (have I discussed with my family? with the doctors?).

If you or your loved one did sign a POLST, and you later realize there wasn’t much conversation beforehand, don’t forget that it is always ok to ask doctors to review and discuss a previously signed POLST. This will help you and the doctors work together better, and it’s usually easy to complete another POLST if revisions are needed.

•  Pitfall: Not being able to find POLST at the key moment.

A key feature of POLST is that it’s supposed to “follow the patient” as he or she moves from one place of care to another. So for instance, if an older person has a POLST in a nursing home and there’s an emergency, the paramedics are supposed to bring the POLST to the emergency room. Of course, this doesn’t always happen the way it should, so it’s not uncommon for families to discover that hospital staff haven’t actually reviewed a person’s most recent POLST.

How to avoid: This problem reflects the fact that our healthcare system is often bad at having up-to-date information at the point of care. This is unfair to patients and families, but unless you live in a state that has a well-functioning system for sharing advance directives and other key information, you will probably need to be proactive about making sure doctors review the latest POLST form when a crisis hits.

Some states have created an online registry for POLST forms; my understanding is that these currently exist in Oregon, West Virginia, and New York.

But even if a state registry is available, it’s always a good idea to be prepared to bring a copy of POLST and other important documents in person, should there be an emergency event.

If you are technology-inclined, you can also look into one of the new apps or cloud-services that promise to keep your important documents secure and handy. I have also seen families keep a copy of POLST and other key documents in less secure cloud storage spaces (such as Google Drive, or Evernote, or even their email accounts). This is risky in that regular cloud storage is not as well protected as storage designed for health information, but I certainly can understand that people often opt to use a service they are already familiar with.

What’s most risky of all is to assume that your loved one’s POLST will be easily available to doctors during an emergency. It should be but it often isn’t, so I encourage family caregivers to be proactive about keeping a copy of POLST on hand, and making sure their loved one’s healthcare providers are aware of the contents.

• Pitfall: Not revising POLST after health situation gets better (or worse).

Here’s a situation I’ve encountered a few times in the past year: a frail older person is hospitalized, seems to be doing poorly, and so during the hospitalization the family meets with the doctors and then completes a POLST indicating “Comfort Measures Only.” For many of those older patients, this remains a good fit for their preferences and situation. But some older patients actually make a significant improvement during the 6-12 months after hospitalization. Yet no one revises their POLST, so when an illness requiring possible hospitalization comes up, people are confused and uncertain as to what to do.

This situation illustrates why it’s important to treat advance care planning as an ongoing process. A medical care plan often needs to be updated as a person’s health, situation, and preferences evolve. Although older adults often experience a decline in health over time, it’s not uncommon for many of them to slowly improve, especially if they have a supportive living environment with lots of TLC (tender loving care, which I try to “prescribe” whenever possible).

How to avoid: Try to remember to review POLST and other advance care planning documents regularly, especially after a new diagnosis or major change in health status.

I myself like to set a date to reassess an older person’s situation, preferences, and care plan. This is especially helpful after hospitalization, since it can be easy to forget to re-address POLST in an older person who is doing relatively well. (Whereas repeated hospitalizations tend to get everyone’s attention; they are also a good opportunity to review POLST forms.)

What experience have you had with POLST, or POLST-like documents?

Have you had any experience with POLST, for yourself or for an older loved one? Do you have any questions regarding POLST, or advance care planning for older adults?

Can you recommend any resources that have been helpful to you?

If so, I’d love to hear from you in the comments section below.

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