What is Advance Directive? – An Interview with Judy Epstein

You already knew about the importance of filling out an advance directive; what about a POLST?

Dr. Judy Neall Epstein is a naturopathic physician and the Clinical Director of the Compassion & Choices End-of-Life Consultation Program. Dr. Epstein spent ten years in private practice before accepting her position at Compassion & Choices, where she works with counselors and clinical coordinators to advocate for the terminally ill and provide education and support for end-of-life planning. We spoke with Dr. Epstein about advance directives, as well as the POLST, a form that people are finding increasingly useful in end-of-life planning.

Liz: To start off, let’s discuss advance directives. What is an advance directive, and what different types of advance directives are currently available?

clinical director, compassion and choices, advance directive, polstJudy: “Advance directive” is really a generic term for a couple of different things. The term generally includes a living will, which is a written statement of preferences, and a durable power of attorney for health care or a health care proxy assignment. Those two parts combined are an advance directive. There are many different kinds, and different states have different laws, and different states honor certain kinds of statements, and so it’s actually very state-specific. But there are general things shared by all the variations, like “would you want a ventilator if you couldn’t breathe on your own?” and things like that.

Our website has all of the individual states and the advance directives specific to that state, which is important to know. You can buy a general advance directive form at a stationery store, and there are generic forms that attorneys will use when people are estate planning. But I think it’s nice to know that there are state-specific forms available, which can make sure wishes are honored in each individual state.

Liz: What are some of the specific differences between state forms, and how can one navigate these differences, if, for example, one travels between states?

Judy: I couldn’t say all the specifics, but for example there are some states that presume that a person would want artificial food and hydration if they couldn’t swallow on their own, and they will just insert a feeding tube regardless of what an advance directive says. It’s not in their state-specific form, though it probably would be in a generic form. So there’s funny little things like that: if you wanted that in your state-specific form, you would need to say “in the event I could no longer swallow on my own, I would not want a feeding tube.”

The thing that’s interesting is, advance directives are really only usable when they’re available during emergency healthcare situations. So the piece that is important, I think even more than writing down and filling out a form, is making sure someone knows exactly what you want and don’t want. We really talk to people a lot about this: fill out the form, but sit down with the person who’s your proxy and all your family members and go through it step by step. “In the event of this, I do want this,” etc., because they are the ones who are going to be making the decisions.

Let’s say you have a California advance directive and you’re in Oregon, and you end up in the hospital; if your partner or child is there with you, they can speak up for you while someone finds that advance directive in California and sends it over. Medical professionals will listen to the family and medical proxy in lieu of an advance directive.

The most important thing is having the conversation. Because if it’s in writing, that’s great, but… if you end up in the hospital with some kind of critical event, it’s a very emotional and stressful time. And if [your family] haven’t heard in your words that you don’t want to be on a ventilator and don’t want artificial food and water, but only look at the form and see the box checked, they might think, “Why would they not want it?” And because of the emotional attachment, they might not be able to say, follow this order, I’m sure that’s what they wanted.

Liz: Now, I want to turn our discussion to the POLST. Is the POLST considered an advance directive?

Judy: It’s in a different category. A POLST stands for “Physicians Orders for Life-Sustaining Treatment.” It’s a form that is signed by your physician, agreeing to and stating your preference for what you want to happen. It’s often used as a Do-Not-Resuscitate form, but it goes a little bit further than the DNR.

People generally keep them in their house—it’s really only meant for people who are quite elderly and frail or very sick or have a terminal illness, people who are in a situation in which they could very easily have an event that lands them in the hospital. Often, when people are that ill, they don’t want to be resuscitated; if they are at home and have that fatal heart attack, they don’t want emergency personnel to be called in to resuscitate them.

Emergency personnel will always look for the POLST on the back of the front door or on the refrigerator if they do indeed get called. Unfortunately, the law doesn’t hold them to it; but at least it makes it clear what a person wants, and makes the odds of having that followed much more likely because it is stated and signed by a physician.

Emergency personnel in particular often feel they have to do whatever they can if they are called. So we often advise people who have a POLST in place that states “do not resuscitate” to advise family members not to call 911! If emergency personnel come, they’ll be compelled to do something, probably from a liability standpoint.

So basically, a POLST is different in that it is signed by a physician, and signed by the person themselves. It doesn’t replace an advance directive, but it is a supplement.

Liz: What are the advantages to having a POLST over advance directives? Is it advisable to have both?

Judy: Sure, yeah. The forms work in tandem with each other sometimes. But if someone is really very ill or frail or terminal, a POLST will answer immediate questions about what’s really going to save them or not, and having a doctor sign off on a POLST gives the document a lot more weight in the eyes of other medical professionals.

Another thing about advance directives that varies between states is that some states require that a notary public signs the document in addition to you. Other states require witnesses only, while others will honor or acknowledge an advance directive that’s only signed by the patient themselves. But because the advance directive is only signed by these people, whereas the POLST is signed by the physician, this gives it more weight. People see it as a sign that coercion was less likely, and that it’s probably pretty likely that the person really wanted that and asked for that.

Liz: Are there differences between states in how the POLST is administered and dealt with? Again, how can one navigate these differences?

Judy: It’s much more straightforward than the advance directive: it’s a 1-page document, whereas an advance directive is an 8- or 9-page document, so there’s a lot less room for confusion on a POLST. It generally just talks about resuscitation options and antibiotic use and artificial fluids and nutrition. So there’s not as much variation. The thing that’s interesting is, in many states they don’t even have a POLST program. But some states, like Oregon, have a POLST registry: once a physician has filled out a POLST on one of their patients, it goes into the state registry, so no matter where you are, in any hospital or medical facility, they can look up and see what the POLST orders are.

hospital, room, advance directive, planning, family

Talk with family members about your plan before an emergency event takes you to the hospital. Photo credit: Megan Elizabeth Morris.

There’s really quite a movement right now to get other states to adopt that kind of thing. There’s actually a great website where people can look up their state, run by the Oregon Health Sciences University bioethics department.

In states where there is no POLST program, we tell people you can still fill one out or try to get your doctor fill one out, but you must know that medical personnel don’t know to look for it. That’s when it would be especially important to have an advance directive in place, because those are known nation-wide and every state has one. The POLST is a more recent development of the last decade or so. So if people want one, and the state doesn’t have one, they can go to this website and educate their physicians and say, I’d like for you to do this.

But the good news is, an advance directive will kind of kick in behind a POLST, and still be there, so you will still have something in place and will not be a total victim to circumstance.

Liz: Finally, what advice do you have for our readers regarding end-of-life planning, and navigating the advance directive and POLST process?

Judy: Fill out the forms—everyone over 18 should do it. People don’t just die from sickness and being old; they die from car accidents and bike accidents and ski accidents and everything else.

And I’ll say it again: I would definitely first find out what is the story in your state of residence through the OSHU website or through our website, but most important is having the conversation. Because if it’s in writing, that’s great, but you should still sit down with your family and review what’s in writing. Otherwise, if you end up in the hospital with some kind of critical event, people get really upset. It’s a very emotional and stressful time. And if they haven’t heard in your words that you don’t want to be on a ventilator and don’t want artificial food and water, but only look at the form and see the box checked, they might think, “Really? I didn’t know! Why would they not want it? They might come out of this in two years!” And because of the emotional attachment, they might not be able to say, follow this order, I’m sure that’s what they wanted.

But if the conversation has been had, and everyone has talked about it, then as a family we can say we know they didn’t want a ventilator, it’s very clear on their forms, and we need to honor that wish. Even though they are in a very vulnerable situation and speaking for you, they can do that much more confidently and guilt-free if they’ve had that conversation. So my advice would be, have that conversation. Everyone should fill out the forms, and everyone should talk to their families.

Liz: Great advice. Thanks so much for speaking with us!

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5 Responses to What is Advance Directive? – An Interview with Judy Epstein

  1. avatar Paul Malley says:

    As the nation’s largest provider of advance directives (Five Wishes, with more than 18 million copies in national circulation), we read your Q&A with Dr. Epstein and would like to offer two points by way of clarification. First, POLST is appropriate only for those who are very, very close to the end of life. Unlike an advance directive, it is not appropriate for otherwise healthy people age 18 and older. The reason the doctor signs the POLST is because it is a medical order, also unlike an advance directive. In theory you can revoke a POLST, but in practice that may prove difficult. Second, Compassion & Choices is the former Hemlock Society, which is a longtime advocate of physician-assisted suicide. We view suicide as the symptom of a problem, not the solution to one. Good luck with your Seven Ponds blog! — Paul Malley, President, Aging with Dignity, a national non-profit organization.

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    • avatar Hank Rodgers says:

      Paul, with all due respect; most, if not all of the readers here were likely former members of Hemlock too, and fully believe in physician assisted suicide. Further, we believe that suicide is, indeed, sometimes the solution to a, very real, painful, and essentially hopeless problem. Hopeless, in the sense that we are all going to die regardless, and often much prefer a pain free exit from life to a continuing struggle.

      The difference between us and our organization, and you and your organization, is that WE ALLOW YOU YOUR BELIEFS AND PREFERENCES, AND DO NOT ADVOCATE LAWS THAT WOULD TAKE YOUR CHOICE FROM YOU — WHILE YOU DO NOT RECIPROCATE THAT HUMAN COURTESY. If you really want to have something to say here, EXPLAIN THAT!

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    • Dear Mr. Malley,
      It was with interest that I read your response to my interview with Seven Ponds. Thank you for your thoughts. There are many organizations today that are addressing these vital issues of which Compassion & Choices and Aging with Dignity are two. When faced with the enormity of these issues, it is good to know so many of us are working to provide information and support to a growing population. POLST, as you know, is a directive document that is formulated within the physician-patient relationship. And yes, as I also stated, is appropriate only for the very ill, elderly, or feeble adults: those whose death is imminent and expected. It will be gratifying to see POLST accepted as a legal document in all 52 states, hopefully sooner than later. And yes, you are right, we are proud to be the organization that carries the original dream of the Hemlock Society of a peaceful death for all who choose. That was decades ago, and we have matured as an organization while advancing the goal of a dignified, peaceful death as part of accepted medical practice. We follow a stringent medical model, and we do not endorse suicide at any time, in any way. We, like you, also believe that suicide is a symptom of a problem, not the solution. Suicide is a fundamental choice between life and death. We are supportive only of the choice of a peaceful death for those who are already dying, and who, if given the choice, would choose life. – Judy Epstein

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    • The recent NPR interview of Compassion & Choices member, Judith Schwarz, Ph.D., R.N., bouyed me greatly and gives me hope that others can avoid the disastrous death that my mother experienced in 2007. This is an area that needs attention, and that is just what is happening.

      My mother was an R.N. and had carefully managed her final decades, carrying at the end of her life medical diagnoses such as hypercholesterolemia, congestive heart failure, COPD, and a cancer. She had gone downhill after a hospital admission and chose to be discharged to an nursing facility rather than have us attempt to care for her 24/7 at home. After a week she asked for Hospice. She had assumed that she would be able to have the same care as did her own sister who had died several years earlier in another state — that family had gathered around, circled hands and then the pain medication was increased until her sister went to sleep and then died. However, my mother was in a facility in a state where that was not allowed. Her final days were a nightmare because the Statin drugs had weakened her muscles and tendons (rhabdomyolysis) and her shoulder tendons suddenly separated when she was attempting to hold herself up using support rails. The staff said, “we do not believe in euthanasia,” and so she could not die peacefully as she had wished. My mother considered herself a Christian, but she felt that she had suffered enough. Her final act which I consider heroic was to stop eating and drinking. She went into a coma and in two days she died.

      I still can’t express the combination I feel of respect for her valiant choice, at the same time of feeling sadness and almost disgust at the religious crusading of the facility’s staff. These kinds of experiences should not happen to anyone. Hopefully the work of Compassion & Choices will help more people to have access to a wider range of options about how they live out their final days.

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  2. avatar Suzette says:

    I wanted to respond:
    I’m always thrilled to get comments on our blog posts and I thank both Paul and Hank for their comments. Nothing like a good heated argument! Having said that our purpose here at SevenPonds is to simply offer correct information and all the choices to our readers. Our intent is not to align ourselves with any organization or support any specific views. I’d like to refer you to our “About SevenPonds” page which outlines our vision:

    “We see a world where everyone can experience death in their own personal way and feel it’s all okay.”

    We are creating SevenPonds as a place for everyone to exist in a mutually supportive way. While nothing is for sure in life – we all have one commonality, and that is that every one of us will die.

    Regarding advance care directives, I offer an interview to Aging with Dignity as an opportunity for Paul to discuss his organization’s well-respected “Five Wishes” form. It would help present our readers with the range of options that exist, and learn what makes the Five Wishes form different. So as to not confuse our readers I want to quote what Judy says in her interview:

    “Basically, a POLST is different in that it is signed by a physician, and signed by the person themselves. It doesn’t replace an advance directive, but it is a supplement.”

    Suzette Sherman, Founder SevenPonds

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