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Transcript - Natural Dying: Advance Care Planning for Dementia
Interview with Stanley Terman, MD
Transcript - Natural Dying: Advance Care Planning for Dementia
Interview with Stanley Terman, MD
Hello and welcome to the End of Life University seminar series. This is your host Dr. Karen Wyatt. And today, I’m happy to welcome my guest, Dr. Stanley A. Terman. Dr. Terman is a psychiatrist, and the CEO and medical director of Caring Advocates. He holds a bachelor’s degree from Brown University, a Ph.D. from MIT, and an M.D. degree from the Universi
ty of Iowa. Before he founded the non-profit organization, Caring Advocates, in the year 2000, Dr. Terman served on the faculty of the University of California Irvine.
The continuous thread of Dr. Terman’s professional career is to empower people to make informed decisions so they can successfully meet challenges in their lives with more pleasure, less suffering, and improved relationships. For almost two decades, he has specialized in reducing the suffering of terminally ill patients and their loved ones especially those faced with unending, unbearable pain, or the many challenges of advanced dementia. Dr. Terman authored four books that deal with end of life choices: The Best Way to Say Goodbye; Peaceful Transitions: Stories of Success and Compassion; and Peaceful Transitions: Plan Now, Die Later--Iron Clad Strategies, as well as the novel Lethal Choice.
He created an advanced care planning tool: My Way Cards/Natural Dying Living Will Cards that generate a clear and specific Living Will to overcome the challenges of advanced dementia, as well as other terminal illnesses. The Natural Dying--Living Will informs others when to stop intervention that only delay dying, increase suffering, and prolong burdens. Dr. Terman’s professional articles have appeared in The Lancet, American Journal of Bioethics, Palliative Medicine, Caring for the Ages, Behavioral Sciences and The Law. His most recent article, published in The Hamline Law Review, is It Isn’t Easy Being Pink: Potential Problems with POLST Paradigm Forms.
And it’s currently listed among the most frequently downloaded articles in the Elder Law Studies e-Journal. Dr. Terman, I’m so happy that you’ve joined us here today and welcome.
Stanley Terman: And thank you for sharing all the details in the introduction. That was one of the best. And I think it is so important to have an End-of-Life University. There’s so much that needs to be understood so that we can approach the last chapter of our life to maximize our pleasure, and the meaningfulness of the experience, and to minimize our pain, our suffering, and our conflicts.
Karen Wyatt: And I absolutely agree with you, Dr. Terman. And it’s so clear that you’ve really devoted your career to that goal. But, I was wondering if you could just share with all of our listeners briefly how you, yourself became interested in working with end-of-life issues because I know you’re a psychiatrist by training. So, I was just curious about that part of your story.
Stanley Terman: I would be delighted. I’m one of those psychiatrists who really enjoys talking to patients and fixing psycho-social problems. Improving relationships, for example. And so I’ve done a lot of work with families, with couples, intergenerational. And I’ve focused on brief strategic psychotherapy, medications when needed. But, my real forte was to do psychotherapy.
So, one of my families had a problem one day. In the morning, Ronald Ferris called me and he said, “I just coughed up blood and I’m going to the doctor. I’ll call you later.” That afternoon, he said, “I have a diagnosis and it’s horrible – lung cancer.” And that was in the late 1990’s. And unfortunately, he died ten months later. He improved his relationship over that period of ten months with my privilege to try to help him with his wife, with his three daughters – one of whom had previously been estranged – coping with the prospect of leaving this world.
Making all his relationships and his other businesses as peaceful and as settled as he possibly could. And I remember driving to the airport. And he called me and he said, “Stanley, I can’t tell you. We just couldn’t have done this without you. This is your calling.” Those words buzz in my ear to this day. And I said, “Gee, I guess you’re right.” And at that time, I was writing the novel Lethal Choice.
Lethal Choice is a medical, legal, and psychological thriller. And I said, “I better learn something about this field in general and in great in-depth.” So, I took myself over to the San Diego Hospice, which was one of the premier organizations, and there I trained for a couple of years informally. I didn’t take a fellowship. I was already quite advanced in my career. But, I got some wonderful mentoring.
And then a few years later, I said, “There’s one problem in end-of-life that no one has solved. And that’s the problem of advanced dementia.” It is the most cruel, most prolonged, and most burdensome of any stage of any disease. It is so challenging because so often there is no plug to pull. Karen, I’m sure you know this and perhaps your other shows have indicated that when a patient is on the medical intensive care unit of a hospital, the chances are about seven out of ten that they will die after the doctor and the surrogate decision makers, which could be officially appointed proxy agents or just the loved ones, agree the time has come.
And then they withdraw the life-sustaining treatment that’s usually a hi-tech kind of apparatus. Could be a ventilator, a breathing machine. It could be just medications that sustain blood pressure or whatever. But, that’s when the patient dies. In the case of a patient who reaches the stage of advanced dementia, a prolonged dying with a life that is really loathsome to them and others that has lost its dignity could go on literally for years as long as someone, another person’s hand, continues to put food and fluid into the patient’s mouth.
Patients will have lost the knowledge, the brain function to understand what food and fluid is, how to use a spoon, how to use a straw. They will not be able to pick up a glass, not because of any physical handicap, but because they don’t understand how to do it anymore. But, they can continue to exist as long as someone feeds them. So, the question is what if we stop? What if we let dying occur naturally as it would if we weren’t providing this now extraordinary and disproportionate kind of care by spending literally hours a day trying to give them enough nutrients so that they can survive?
And the first patient that I describe in my book Peaceful Transitions lost weight from 180 to 70 pounds over a period of 2 years because even despite the best of efforts, such efforts are futile. They’re non-beneficial. They don’t work. And basically, this poor fellow, whose son gave me permission to use his name and his father’s name, died of slow starvation. Nobody wants that.
The problem of the challenge of advanced dementia and how to avoid a prolonged dying was one of the most important unsolved problems in the end-of-life universe. And I have been devoting the last 15 years to honing down an iron-clad strategy, the means for people to say, “Okay. If I do this, then I can be sure that I won’t have this most cruel, most burdensome, and most prolonged way of prolonging my dying.”
Karen Wyatt: And would you talk a little bit more about that term you used – the iron-clad strategy?
Stanley Terman: Let me start off by saying that many people underestimate just how difficult it is to get your wishes fulfilled when you reach the point where you no longer can talk for yourself, no longer can make medical decisions, have lost mental capacity, are no longer competent. I use all those terms. They all mean approximately the same thing. As long as you can speak for yourself, you can say, “This is what I want. This is what I don’t want.”
And every adult in the United States who has competence can refuse any medical treatment for any reason and they don’t even have to justify it. And this came down, as you know, as a ruling in the 1990 case of Nancy Cruzan heard by the Supreme Court of the United States. And I would only add one thing: that is if that patient should be fully informed, have all the reasonable knowledge to know what the options are so that any competent adult who’s informed can refuse any treatment even if that treatment is likely to lead to an earlier dying.
If you cannot speak for yourself, then the chances are seven out of ten people who are listening to your show today will get to the point where they get very ill will not be able to speak for themselves, will not have mental capacity. The physicians need to have another way to learn what are your end-of-life wishes. And generally speaking, there are two ways. One is you can write them down in what’s called a living will. A living will is a set of instructions to physicians and they follow the general format of if/then.
If I’m in a coma and there’s no possibility that I can recover, then this is what I want. Stop all life-sustaining treatment, for example. Okay. So, that’s one way. You write it down. The second way is you appoint people who you trust to make decisions for you. Okay. Both of those ways – and I’ve been in the trenches now for so many years. And I see it over and over again – are plagued with challenges that people don’t appreciate. I meet people who say, “Oh, I have a living will.”
And I say, “Yes. But, does it cover advanced dementia?” And nine out of ten of them do not. Or people say, “My spouse – she knows, he knows – what I want. I don’t have to worry.” Yeah. What happens if that spouse is not available when the time comes? What if they become incapacitated mentally? Or what if they’re not alive when you need that help? Will the second in command know as much as the first whom you appoint?”
And I cannot impress enough why it’s important to have three components to your advanced care planning. A living will that is really clear and really specific that really covers advanced dementia. That’s part one. Part two is not just one, but several people whom you trust who knowswhat your wishes are and are willing to go fight for them, to advocate for you. And then the iron-clad strategy.
And two out of three most of the time will work, but sometimes it won’t. I’ll give you an example. It’s a very sad class that was just decided on February 3rd, 2014 by the Supreme Court of the Province British Columbia just north of us. Margaret Bentley had been a nurse and had taken care of patients who had advanced dementia. So, she really knew that this was not a stage of the disease that she wanted to have or to endure a prolonged dying.
So, she created and completed a living will, and she appointed her husband and her daughter to be her proxy agents. The Supreme Court ruled that even though it takes up to six times to put a spoon on her lips or a glass on her lips to evoke the reflex of opening her mouth and then swallowing, which she will do even if the spoon is empty, which kind of proves that it’s a reflex – even though it can take up to six times by feeding and putting in liquid by another person’s hand by reflex, this must continue until she dies of another cause.
And she had a living will, and she had a proxy, and she had an agent, but she did not have an iron-clad strategy. Also, there were problems with her living will as there are problems with so many living wills that my colleagues and I in Caring Advocates Review, free of charge – and we say, “Yes, this will do the job,” or, “It should be tweaked. And by the way, it is possible, Dr. Wyatt, to have two living wills and one is very general.
For example, Five Wishes is a very nice living will because the last few of those five wishes you can say, “These are the pictures that I want to have. This is the music that I want to have played. This is the kind of flowers that I want to have in the room.” And all this nice sweet stuff is great as long as there’s no conflict in you not having a prolonged dying with suffering and burdens. So, how can you have two living wills? You can just say in one of them, “If there’s a conflict between the two, this is the one that prevails.” It’s just that simple.
Okay. So, Margaret Bentley had a living will and it didn’t work. And it was disqualified by the British Columbia Supreme Court. What she said was, “I want no nourishment or liquids.”
But, she also had another statement that said she did not want to be kept alive by artificial means. The judges put together those two sentences and they said, “Well, she probably means tube feeding, not hand feeding.” I would disagree. And I think 9 out of 10, if not 99 out of 100 people would disagree because there was another statement in her living will.
It points out a specific symptom that’s very well known that occurs in middle to advanced dementia. It says – and I quote from Margaret Bentley’s living will – “In the event that mental deterioration is such that I am unable to recognize the members of my family, I ask that I be euthanized.” And euthanasia means that someone – a physician – puts into your body lethal medication that causes your death immediately. And this would be voluntary euthanasia because she asked for it.
What’s the problem with that? The problem is that, that is an illegal request. It was not legal for her to ask other people to commit a crime. And so the nursing home that saw this living will became alarmed and they said, “This living will is not valid because of that one statement that’s illegal.” What could Margaret Bentley have done? She could have just added the words. I counted them – 13 words.
Instead of saying no nourishment or liquids, she could have added the four letter word no oral nourishment or liquids, or two words – no nourishment or liquids even by mouth. Done deal. And then she could have said, “I ask that I be euthanized if when I get to that stage it is legal.” Then it would have been clear that this woman does not want to live in this stage of advanced dementia, but she’s not asking for anything that is illegal.
And therefore, the most important thing we can do to honor and to respect a person who is suffering unbearably is to fulfill their end-of-life wishes. These are the last wishes that they beg us to honor and we should do that every time we possibly can. So, she had a living will that was flawed because the wording was not quite right. And one other problem that Margaret Bentley had was that she created her living will in 1991 and the British Columbia legislature passed other laws later on so that when she mentioned something like basic care – that she wants to receive basic care because she doesn’t want to suffer.
Even if it would inadvertently hasten her dying, she still wants basic care. Well, they took those two words – basic care – and they say that now, post facto, they’re in the statute and it’s not legal to ask to forego basic care. Well, it’s legal and it’s respectful to honor a person’s wishes and her intent. But, inadvertently, Margaret used words that became buzz words and so she is now suffering. She has already had three years where she has not been able to utter a word or a coherent sentence. And who knows how much longer she is now going to have to live in this state, which she tried very, very hard to avoid.
Karen Wyatt: It sounds like your organization might have been able to help her avoid these issues just by reviewing the living will and pointing out some of the problems with it for her. Is that correct?
Stanley Terman: That is absolutely correct. Of course, when Margaret had capacity, when she was competent, when she created her living will in 1991, we didn’t have the iron-clad strategy. This strategy has been available since 2009 and further revised and refined from 2011. And now it’s set. But, we could have done some other things. And in fact, I’ve been in contact with the physician who’s taking care of her near Vancouver and we're still seeing if there is anything we can do.
But, yes, for you listening audience, if they are interested in having a free opinion as to whether their living will is likely to do the job, or needs to be slightly tweaked, or maybe add another one to it, we would be delighted to do it. Okay. To provide that free advice. So, you need a living will because you have to have a statement that says very clearly what you precisely want. Stopping eating and drinking is against our food loving culture and it sounds like Holocaust - surviving starving.
It sounds like cruelty, but in fact, advanced cancer patients, who have not lost the ability to speak for themselves, tell us that eating is a burden. Eating takes the energy and makes it more uncomfortable. And many of them voluntarily give up eating and drinking even though could still eat and drink. And in fact, Linda Ganzini, a medical doctor in Oregon, did a study in 2003 that was published in The New England Journal of Medicine. And she showed that dying by refusing food and fluid is more peaceful than dying by physician assisted dying.
A very surprising result. And actually, even though I knew about this result, I still had to do some things for myself, Karen – Dr. Wyatt – to prove it to myself ‘cause I said, “How can I recommend this to people unless I really know.” So, I underwent two complete fasts of food and fluid myself. One lasted for four days. The other lasted for five days. The five day through YouTube/Dr.Terman.
So, anyway, if you want to see what a person looks like after they’ve been fasting for five days, not that bad. Although, what I found was that hunger is not a problem and that is what the literature said. Hunger’s not a problem because you change your metabolism, you produce ketones, and this process called ketosis provides a mild euphoria that reduces hunger. However, thirst was a problem, but it’s a problem that can be solved.
And it can be solved by using thirst-reducing aids. And so members of Caring Advocates have access to us sending out to them a TRAK, a Thirst-Reducing Aid Kit, that contains all the things that you may need in sprays, and gels, and swabs, and drops, and so forth to maintain your comfort throughout the usually 7 to 14 days from the time you stop eating and drinking completely to you have a peaceful dying. And I’ve been at the bedside of dozens of patients and heard about many, many more. It turns out to be one of the most comfortable ways to die.
Two of my colleagues, who have been co-authors on the book, both of their mothers died this way. My step-father died this way. My father-in-law died this way. There are other peaceful ways to die: hepatic coma, renal coma. Not so sure, but maybe insulin coma. Natural dying is one of the most peaceful ways to die.
Karen Wyatt: And I wanted to mention my own mother died last year. She had biliary cancer. And for the last month of her life, she didn’t eat at all. She felt terrible every time she ate. She had terrible pain, and bloating, and distention. And it was extremely peaceful and very comfortable for her. She did drink a little bit during that month, but she stopped eating.
She lost weight. She was definitely wasting away by the end of the month. But, she was able to devote all of her energy, as you were describing, to working through other issues at the end-of-life. She had no interest in eating. Food wasn’t important to her anymore.
Stanley Terman: Exactly.
Karen Wyatt: And it was very beautiful.
Stanley Terman: Very beautiful is a wonderful way to describe the very last part of the last chapter of one’s life. And I’m glad that your mother had that. By the way, the more you drink, the longer the process will take. And so we don’t usually recommend ice chips. And we can take care of thirst in other ways. But, the advantages of dying by voluntary refusal of food and fluid – dying in the way that we call natural dying – is that if you’re alert, you actually become more alert because you are not plagued by all the – for example, if you have cancer, the bloatingness and the pressure of the cancer on other organs or if you have a brain problem.
One of the ways people become more alert is to take fluid off the brain. So, then Joanne Lynn, in 1986, published a landmark book that proved in so many ways physiologically why it’s so much more peaceful by refusing food and fluid. So, what people don’t realize about patients who are in the advanced stage of dementia is very significant. I’ve heard authorities in the field –I won’t name them – say, “Advanced dementia patients don’t suffer. They just don’t know what’s going on.” That is not true.
Patients in the persistent vegetative state may not be able to experience pain and suffering, but patients in the stage of advanced dementia can and do experience pain and suffering. And that’s why it’s so important not to prolong the process of dying. I have in my book listed many studies. And I’ll just give you a couple of examples. If you break a hip and you’re demented, you will probably get one-third as much medication as if you break a hip and you can still ask for medication when you want it.
And so unfortunately, patients who are in the stage of advanced dementia no longer can complain. They no longer can say, “Doctor, it hurts here. And it still hurts even though you gave me some medication.” They’re just at our mercy to hope that we give them enough pain medication instead of undertreating their pain. In addition, there’s another unique problem that patients in advanced dementia have and that is their response to pain is atypical. It’s not like patients who do not have dementia who are in pain.
Patients who can express themselves say, “Gosh, this is awful,” or, “I have this very unpleasant experience. Please help me,” and so forth. What do patients who have dementia do? They sometimes become violent. If they become violent, they get sedated with tranquilizers that rarely touch the pain. If they become withdrawn, which is another very typical way that patients respond to pain in advanced dementia, then they’re no problem to the staff, so they ignore them.
They’re just sitting there. There are anecdotes as well. And although it’s not scientific proof, we have to take this to our heart. And there was a program called The Awakenings in Minnesota, where someone innovatively wanted to see what would happen in the nursing home if they slowly and carefully took patients off as many medications as possible, and see whether they did better, whether they became more functional, and social, and so forth. Well, one of the patients who they said, “Oh, yeah. She’s always moaning and groaning, always saying, ‘Help me.’ That’s just who she is. It’s a constant with her. We don’t have to pay attention to that.”
When they took her off all of the medications that were also impacting on her mental abilities, she was finally able to point to her knees. And when they did and ultrasound and x-rays, they found that there was no cartilage left. There are so many kinds of pain that you cannot see. Yeah. You can see a bed sore. It looks horrible – raw, and red, and bleeding, ulcerated, and so forth. But, sometimes arthritis, and bowel obstructions, and the many kinds of pain that you can’t see. And so here’s my point.
When you’re doing advanced care planning, when you’re creating your living will, and when you are making the best guess on what to instruct people in the future if you reach the stage of advanced dementia, it is possible – and in fact, one of my co-authors in my most recent paper that’s coming out soon argues this point and we fully respect it – maybe those spoonfuls of pureed food that are just the right consistency so that you don’t choke on them are still sweet nectar to you, and you still enjoy them, and you still therefore find this to be a reason to stay alive. Yeah. That’s one possibility. But, the other possibility is that particularly as the number of dementia patients triples, as the number of caregivers goes down, as the people leave the field of geriatrics ‘cause it’s so challenging and underpaid compared to doing more remunerative kinds of medicine and nursing, that you will be warehoused in a place where your healthcare providers will not recognize that you have pain.
And if they don’t recognize that you have pain, they will not treat your pain and you may suffer for years. There’s your choice. Which one do you want? I know what I choose for myself.
When I meet the certain criteria that my living will can set forth in terms of these are the ones that are really important to me, then I want natural dying. I no longer want to be hand fed.
Karen Wyatt: Dr. Terman, would you tell us about some of the resources? I know you spent a lot of time creating information products for the lay public, for caregivers, and for patients. Would you tell us a little bit about some of your books and your Living Will Cards?
Stanley Terman: Sure. I’ll be glad to. There are people who are not informed, who say – as if it’s a fact – “You just can’t imagine what your existence will be like in advanced dementia; therefore, don’t even try.” I so disagree with that because if you really want to know what advanced dementia is like just go to a skilled nursing home and about two out of three, if not seven out of eight, patients there will be suffering from dementia. And you can see firsthand and smell firsthand.
And you can also see videos. And we’ve created videos. And then one of the resources that I can point out to you is a six-minute video. There’s a video entitled Alzheimer’s Disease: Facing the Facts, Public Broadcasting Service, 2008. Won an Emmy in 2009. It’s an hour long, but I condensed it to six minutes. And those six minutes introduce you to about a dozen patients who are suffering from different kinds of symptoms from advanced dementia and that is one of the best introductions.
My colleagues and I also created the Natural Dying Living Will Cards, which has another name as well called My Way Cards. And they’re the same tool to create a living will except that one honors the religious perspective to try to be consistent with the major conservative religion - that’s the Natural Dying Living Will Cards. The My Way Cards, as you can tell from the title, is for those who champion autonomy, the right of self-determination.
It’s my body and I want to decide what happens to it, so do it my way. But, the cards themselves number 48. And each one is written in very simple and plain language accompanied by an illustration. And for each card you make a decision one at a time. If I’m in this condition – for instance, we have a patient who’s hiding under a pillow and is just scared to death of hallucinations. And the two people on either side of the bed can’t possibly console them.
Hallucinations are particularly common in the dementia that is associated with Parkinson’s disease or Lewy BodyDisease. And that’s another kind of suffering. So, you say, “Okay. If I were in this situation, I now have three choices. Choice number one is treat and feed. Do everything you possibly can so that I can live as long as possible.
Next is I choose the opposite of natural dying, so I don’t want any food or fluid by another person’s hand to put it into my mouth, but I still want a little comfort care that I need so that I can die peacefully. The third is consider natural dying. Let my proxy decide. I can’t decide for this particular issue when maybe I only have hallucinations like this, for example, once every two weeks and they only last for ten minutes. And at other times, I’m not too bad. I kind of enjoy life a little bit. You can see me smile a little bit.”
In that case, you may have the symptom, but it’s not severe enough for natural dying. And so the best person to decide is your proxy when that time comes. And so these are the three choices. There may be other symptoms, unwanted behaviors, loss of functioning, or conflicts with long-term values, life-long values, in fact, that you would say, “Absolutely. I want natural dying every time.”
For example, if you have to tie me down or give me chemical restraints so I don’t lash out at people who love me ‘cause I don’t know who they are anymore, ‘cause I can’t tell the difference between what is gentle touching and physical assault and I live in this horrible state, where I fear being touched and I react so horribly. That alone might be natural dying - absolutely. So, it’s a unique living will.
Very few living wills, but some, offer the global instruction to those who will be interpreting them in the future whether they have leeway or no leeway. In other words, is this strict? Are we following it exactly to the letter or we’ll massage it and see, and consider it in the context of what else is going on at that time. For the Natural Dying Living Will and My Way Cards, you can indicate whether you want 100 percent leeway or 0 leeway for each of these 48 symptoms.
Karen Wyatt: Are these cards available on the website – the Caring Advocates website?
Stanley Terman: Indeed they are. And in fact, there is a free demonstration. As I mentioned, there are 48 cards total. You can see the first 27 with no obligation as an absolutely free demonstration. It’s called learn before you decide. And that has a double meaning. Learn before you decide means globally if I’m going to be challenged by this stage of advanced dementia, I need to learn about this – what it is like for me as a patient and for my loved ones who have to take care of me and make sacrifices for me.
So, I want to learn before I decide how to create my living will. And the other minor reason is we have this tool and if you want to learn before you decide whether you want to buy it or not – and the cost is modest – then you can take the 27 out of 48 and see whether it suits you or not. So, learn before you decide is on the Caringadvocates.org
Karen Wyatt: And then it sounds like your books would also be a great resource because it contains stories. So, that might be something someone wanting to learn more about natural dying could read – these actual patient stories – in your books.
Stanley Terman: Exactly. Peaceful Transitions: Stories of Compassion and Success, it motivates people. It shows you the good and the bad. And what happens if you don’t have an iron-clad strategy, and what can happen peacefully and – as you used your word for your mother – beautifully as you do. The second book – and by the way, they’re also available on Amazon Kindle as an e-book – Peaceful Transitions: Iron-Clad Strategy. That tells you exactly what you have to do.
Now, I want to point out about that book is that it’s great for those people who really want to delve in and do it yourself because we want to make sure that people can have confidence in it. We’ve covered all the bases – all the ones that we know about and can anticipate. But, sometimes people need a little guidance and that’s why Caring Advocates is here. So, you can either buy that book, Plan Now, Die Later, or you can say, “Okay,” to one of our staff people, “hold my hand. Take me through it. What do I have to sign? And explain it to me so we can make it a little easier.”
And just to give you an example of what the iron clad strategy is in addition, have a Skype video interview that we record with patients who want the program so that they can have full confidence in it. And on this video with a set of structured questions, we ask the advanced care planner – the person who’s doing the living will and designating the proxies – what precisely do you want and why do you want it - on video. And then when the video gets to the end, then the clinician – it could be me, if you’d like – puts a good housekeeping seal of approval.
In other words, we say, “For making these end-of-life medical treatment decisions, you have capacity. You are competent.” That video is so golden. Anyone who sees the video will say, “Well, that’s it. There’s no conflict. This is what she wanted. This is why she wants it. It was approved by a psychiatrist and there’s a slam dunk. No conflicts.”
There’s only one problem with having such an effective iron clad strategy, Karen, and you may not guess it, so let me tell you what it is. If it’s too good, it works. So that dying occurs not only peacefully and timely, but also privately. And when it occurs privately, you don’t read about it in the newspapers and you don’t find out about Caring Advocates.
So, the better we are, the better the iron-clad strategy is, the less we have the notoriety or news to let people know that this will work. It’s ironic.
Karen Wyatt: That’s true. The fewer controversial cases there will be that get covered in the news and, therefore, we won’t be hearing about this. But, all the better reason for us to do this interview and try to get the word out to people about Caring Advocates.
Stanley Terman: It is so important. I can’t think of a disease that is worthy of more effort, and time, and energy to plan ahead for than advanced dementia. One of my financially-oriented colleagues suggested this. He said, “Think about return on investment. One to three hours of advanced care planning could save you one to three years of living in a state that you’ve now considered to be misery and could wipe out your assets so that your grandchildren can’t go to college.”
Karen Wyatt: Wow.
Stanley Terman: That’s a return on investment.
Karen Wyatt: That’s a great point. And I was wondering if you had any suggestions to share if someone is listening right now who themselves feel like this is what I would like to have in my living will. How they might approach family members to have a discussion about natural dying.
Stanley Terman: Excellent point. We have a list of questions that begin with “Is this a good time to discuss a rather sensitive issue?” It was published originally in my first book, The Best Way to Say Goodbye: A Legal Peaceful Choice at the End of Life. And we are doing a survey because now that I have created with my colleagues the iron-clad strategy and I can come out of my writing, research actually cave in which I just hide from the world so I can get this work done, I want to encourage everyone to have effective living wills.
And by effective, I mean that when your future doctor sees it, he puts his pen or her pen to paper and writes the orders that you want for natural dying. So, how do we encourage people to have living wills? We are about to embark on a study titled The Encourage Living Will Research Project, in which you can encourage your parents, your close friends, other loved ones to complete a living will. And one of the ways that we encourage it is to say, “If you’re going to go to someone else and encourage them, maybe you need to know how to have that conversation.”
And that conversation, those lists of questions are actually in the survey itself. And if people are interested in collaborating on this survey, I should point out that as of mid-February, we have not yet submitted it to the Institutional Review Board. So, we want to do a limited study, some pilots, and then go absolutely national and international ‘cause I have colleagues in Britain and Australia as well. So, our passion, our mission is to bring effective living wills to everyone who will be faced with the huge challenge of advanced dementia.
Karen Wyatt: Well, Dr. Terman, you have really provided a lot of resources through Caring Advocates. I’m so impressed with this work you’ve done because you not only have resources for professionals. You’re doing research and publishing it. You’ve created books and these cards for lay people to use. And I’m just really impressed at how comprehensive your work has been.
Stanley Terman: And I have to credit some of the most esteemed and well-recognized colleagues in this field, for example: perhaps the nation’s primary authority on Catholic Bioethics is Ronald Hamel of the Catholic Health Association in Saint Louis, Missouri; the national leader in medical futility - futility being those treatments that are non-beneficial and maybe even harmful - and that is Thaddeus Mason Pope, who leads the Health Law Division at Hamline University in Minnesota.
And I can name a dozen more who have generously contributed their time, their energy, their expertise, their most detailed critique to make sure that the product is sound from each one of their standpoints. For example, Guy Micco, who is the head of The Center on Aging at the University of California Berkley; Ron Miller, who founded The Center on Medical Bioethics at the University of California Irvine; and so on.
So, we have people from the religious, from the legal, as well as from the clinical and bioethical. All of whom have made tremendous contributions to create the best tools that we know are available today for not only advanced dementia, but for other terminal illnesses as well.
Karen Wyatt: Well, Dr. Terman, this was such an important conversation for us to have and such an interesting subject. And as you and I discussed before we started this call, there’s so much more to cover than you could even possibly do in one interview, so it strikes me that maybe we need to consider having you back as a guest later on this year. And in the meantime, our listeners could submit their questions that they’d like to have you answer so that we could get out the kind of information that those listening would most like to have, what might be of use to them. I hope that you’d be willing to come back a second time.
Stanley Terman: I would be delighted to know how your audience has heard what we’ve discussed, what they want to know further. And I’m just going to mention one topic that didn’t come up, but it’s really important. It’s very devastating to receive the diagnosis of dementia. And you receive it when you’re in the stage of early dementia, when you still have capacity to make decisions.
There’s two points. It is urgent to complete your living will and your iron-clad strategy at that point in time before you lose it forever, before that window of opportunity goes away. Second point, it’s a very vulnerable time for patients, some of whom have what we call “the dementia fear”. They fear this: If I don’t kill myself now when I can, then I won’t be able to kill myself later. So, that many people will commit suicide in the early stage of dementia only because they do not know about the iron-clad strategy and that is a tragedy.
It offends the sanctity of life. It is unnecessary. It’s horribly sad. And so we need to get the word out to those people. In Huntington’s disease – 30 percent of patients with that diagnosis attempt suicide. It is one of the most common ways they die with about 1 out of 16 dying from suicide. They don’t have to.
They can set up an iron-clad strategy so that when they reach their selection of symptoms according to the My Way Cards or Natural Dying Living Will cards, then they can die naturally. So, I’d love to talk to you more about that.
Karen Wyatt: That’s a great point to make and one that I’m sure hadn’t occurred to me before. It’s sort of the collateral risk of increased suicide deaths because of the diagnosis itself when people don’t feel there’s any hope out there for them and don’t feel that they will have any control over the final years of their life. And so that’s an excellent point for you to make. I’d like to tell our listeners for right now that they can go to Caringadvocates.org, it sounds like, to get all of this information we’ve been talking about: your books, the cards, and even you mentioned the kits – the thirst reducing –
Stanley Terman: Aid kits.
Karen Wyatt: – aid kits available through the website as well.
Stanley Terman: Absolutely. And they can also reach me at 800-64-PEACE. That’s the P-E-A-C-E kind of peace. 800-64-PEACE is our toll-free phone number.
And of course, as I mentioned, I’m available on Skype as well. And all the contact information is on the website. And we’re here because we want to respond. So, we would love to hear from you.
Karen Wyatt: Well, I just want to thank you once again, Dr. Terman, for taking time out just to share all this information with us. And I’m looking forward to having you back again in the future. And I do want to encourage all of our listeners to go to Caringadvocates.org and check out all of the fantastic resources there, but also please submit any questions you might have for Dr. Terman to me by replying to one of the e-mails you receive from me.
That’s probably the easiest way to get questions back to me or you can go on the Facebook page for End-of-Life University too. But, I’ll gather those questions before Dr. Terman’s next visit here in order to get into the issues that you listeners would like to hear more about. So, one last time, Dr. Stanley Terman of Caringadvocates.org, thank you. Thank you once again for being with me today.
Stanley Terman: It’s my pleasure. And I’m so glad that you asked the right questions and gave me the opportunity to explain what our mission is so that we can help more people face the huge challenge of advanced dementia and other terminal illnesses.
Karen Wyatt: And we’ve been discussing the topic of natural dying. This is the End-of-Life University seminar series. I’m your host Dr. Karen Wyatt. Please join us again in another two weeks for the next interview in our series, and encourage your friends and colleagues to sign up for this series as well. And until we speak again the next time, take care.
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