Long ago I read Dr. Chiu's Understanding Behavior in Huntington's Disease. It was magic, such a profound philosophy of simple truths. He transformed me and the nursing staff at Meadow View Mannor. His philosophy can transform you and the care of thousands of Phds. --Jerry 27-Nov-01
Submitted by: Phil Hardt 27-Nov-01 Word Document
[I make an assumption here that this videotape was done at the same time Dr. Chiu also gave his speech: Understanding Behavioral Changes In Huntington's Disease at the New York University Medical Center on September 12, 1989. This first speech has long been one of my favorites and is now joined by this one! The video was done at the Cardinal Cooke Center in New York. If anyone knows the exact date, who did the videotaping, who was on the credits, or any other pertinent information regarding this video, I would be happy to add it to this transcript if you e-mail it to me. Unfortunately, not much is known about it right now. Special thanks go to Bob and Ruth Lentner from Michigan, for preserving and practicing what's contained in this treasure! Transcript prepared by ...Phil Hardt "Phillip J. Hardt" <HDwarrior@HDlighthouse.org> .]
[Kids are shown singing Happy Birthday to their grandmother, Nanny. Dr. Chiu wheels in their grandfather and encourages him to throw birthday balloons back-and-forth to his grandchildren.]
That was Nanna's husband in the wheelchair. He has Huntington's Disease. I'm Bob Kostas. I wanna tell you that there was a time when Nanna's birthday would have been celebrated without grandpa because you never know how a Huntington's Disease person is going to behave. What they might do to disrupt the festivities and maybe even scare the children. Too many grandpas have been written out of too many family scenes needlessly. Too many times love is even turned into fear as family members try to deal with the effects of this strange disease on a sibling, a spouse or parent.
| "We hope and pray for a cure but there is no cure for Huntington's Disease, not yet. Good people are working on it of course. In the meantime, other good people are working on the only alternative available- care. The kind of care that doesn't abandon the Huntington's Disease person." |
The kind of care that tries to make full use of every single brain cell the Huntington's Disease person can command. The kind of care that understands occasional erratic behavior. The kind of care that includes a grandfather in the happy family event we just saw. The kind of care that has been pioneered by one very sensitive and very practical person. The Hong Kong-born Assistant Professor of Psychiatry at the University of Melbourne, Australia, Dr. Edmond Chiu. For almost 20 years Dr. Chiu has been spreading the realistic approach that in the absence of a cure for Huntington's Disease, all we can do is care, and care a lot- care about and care for. He'd much prefer that we could do something about the "quantity" of life for Huntington's Disease people, but for now he accepts the fact that we can't, and he asks us to accept that fact too. He also urges us to realize that through care we can improve the quality of life for the Huntington's Disease person. Here he is to share his ideas with us, Dr. Edmond Chiu.
Let's just spend a few moments talking about Huntington's Disease. Over the last few years a lot of knowledge has been gained about the condition but it is necessary at this stage to address the given attitude towards the condition which needs to be changed. It is no easy matter to change attitude. Knowledge itself is not enough if we want to provide the best quality of care for our Huntington People. Unless we have the right attitude then all the knowledge in the world will not give them a better quality of life.
For instance. In our medical textbooks we have frequent reference to Huntington's person having high level of promiscuity, high level of crime, high level of psychopathology and psychiatric conditions. All that is rubbish! Apart from the high level of depression, all the other things do not exist and unless we change our attitude with the knowledge say therefore our people do not have these things and deserve a better quality of life it will not happen.
Another common myth is that Huntington's person cannon learn new skills and Huntington Person frequently are unable to control their behavior. That is not the case. Despite the death of brain cells they are still able to take responsibility and take control of their lives and be given autonomy. In understanding how Huntington's person behaves we have to remember that that person is the interaction of a multitude of factors. These factors include the death of brain cells which result in abnormal movement and change in intellectual function. At the same time with the death of those brain cells the chemistry changes and the brain no longer functions the way it used to.
With also Huntington's Disease there is also a lot of sociological changes that accompany it. They loose their job. They loose their identity as contributing members of society. The relationship with spouses and children or neighbors change because they become a more dependent person, they require more care. The personality changes that accompany brain cell change also interact with that.
In addition, they are entitled, and do have a variety of physical illnesses that attack this person. Therefore we must constantly be reminded that what happens to Huntington's Disease person is not always just Huntington's Disease- it's other things interacting with that individual.
Frequently we have to think of Huntington's Disease person as a pebble dropped into the pond of peaceful society. It's ripples affect immediate family, extended family, friends, fellow workers, employers, employees, neighbors, even politicians, bureaucrats and churches. Therefore, that person is not alone and the fate of Huntington's Disease community is the fate of society at large. And in helping a Huntington's Disease person we have to remember that we have to deal not only with the person, but we deal with society at large.
Frequently I am asked: "How do you handle a Huntington's Disease person with behavioral changes?" The first principle I like to enunciate is that irrespective of how difficult and how abnormal or how stressful the behavior is on us we accept the behavior and accept the person. We work with the behavior. We do things to change the behavior but, we accept the person in whom the behavior expressed. Huntington's Disease person is disabled, no doubt about that. He has an illness. He has a disease. But, I do not want to think of Huntington's Disease person as a sick person. That is, we do not permit the Huntington's Disease person to hide behind a sick role and be dependent upon us and upon other carers. One of my favorite sayings is that, to a Huntington's Disease person, is that, "You are not sick, you've only got HD."
Now, there are also other myths about Huntington's Disease. People think Huntington's Disease person is demented, like say, for instance, dementia of Alzheimer's type. I do not believe that Huntington's Disease patients are demented, or suffer from dementia like Alzheimer's Disease. Huntington's Disease patients remain oriented through their lives. They retain insight, they are alert, and one of the tragedies of their condition is that they have insight. They know what's happening to them and they know that they're loosing the physical ability, loosing the intellectual ability and that their children are at risk for the condition. Sometimes I wish to God that they do no have insight and be more blissfully unaware.
I did mention the Huntington's Disease person can learn. They can learn by repetitive trials. We must not treat them as someone who is not capable of learning. The mistake we frequently make is we do not give them enough time and patience to learn new skills. Given time and patience they will learn new skills and surprise us. I have one patient who learned pottery after he got HD and he presents me with a piece of his own pottery every Christmas as a present. He has taught me that Huntington's Disease person can learn. They retain special interests. For instance, if their interest is particularly a ball game they will follow that team loyally and will follow the progress or failure of that team. If we concentrate on that kind of interest and concentrate on newly developed interests I believe that they can have a very satisfying intellectual life. We're to encourage the learning process by targeting those areas of the special interest and restricting the field of learning.
Huntington's patients sometimes have difficulty making choices between more than two things but if we target it and summarize it for them so they can concentrate their brain power onto just those things that can be learned and can be learned with repetitive trials then we will be able to be surprised by the capacity to learn.
Some of the physiological changes we need to address that is the result of the loss of cells from the front part of the brain, the frontal lobes. As a result of that they are unable to make, what we call sensible judgments. They have difficulty organizing their lives. They have difficulty planning things. Any activities requiring what we call sequencing have a problem- the activity to go from A to B to C to D and the down to Z. They sometime skip steps. Sometimes they forget steps and we may have to help them in organizational behavior.
Social control and social nuances may be affected. They're not so nice person when you take them out to dinner. However, if we accept that that is part of the brain change and then give them a life that includes some of those social functions, accepting the behavior, good quality of life can be had.
While we're talking about dinner, we will remember the Huntington's Disease person requires twice the calories that we do. They are always hungry. When they are hungry give them food.
A lot of people do not believe the Huntington's Disease person can eat by mouth. There is a tradition, in this country, that the Huntington's Disease person is given gastronomy tube. In Australia and in Lake Maricabo, gastronomy tubes are definitely not options. Venezuela Huntington's Disease populations as with Australian, eat by mouth up to the day they die because we believe they can swallow, and they enjoy the pleasure of eating. They enjoy the social life that surrounds a meal. It's not much fun and not much dignity to be fed by a machine pumping fluid into your stomach through a tube. We have demonstrated in 10 years of looking after long term care patients in our facility that we do not have a large amount of inhalation pneumonia. We have only six case of inhalation pneumonia in ten years and none of them have died. They have managed to regain the ability to swallow, to eat, to derive pleasure from eating.
| "We put quality of life as the main criteria for decision making regarding their lives. What makes for quality of life is worth doing. What detracts from quality of life in not worth doing." |
For instance, we had to make a very difficult decision about smoking. I am an antismoker. I don't like smoking around me. However, when we had to make the decision whether our people is allowed to smoke it came down to the point they say 'Smoking is one of the last pleasures we have." And at the same time we discovered, by our physical therapist, that the Huntington's Disease patient who smokes, in fact, have better lung function because every time they inhale and exhale they in fact do physical therapy. So the decision was made to let them smoke but we changed their environment so that they're in a safe environment so that they don't get burnt and the facility doesn't get burnt.
Huntington's patients have difficulty because of the movements, in dealing with buttons and zips. But given comfortable clothing they are able to handle their dressing. Which brings me to the point- that we need to deal very much more with the environmental health of our patients. In other words, its up to our ingenuity to make their environment to suit them, rather than to make them suit our environment. Environment for Huntington's patient is very important and I'd just like to point out a few things about architectural design as part of a patients environment.
[Dr. Chiu is now in an Phd's (Person with HD) bedroom.] The first thing you notice is that the bed is empty. That's very important that during the day time the patient should not be in bed, unless it's absolutely necessary, but should be up and out about doing normal things as much as possible. So the empty bed during the day time is an essential feature of care of Huntington's persons. [Looking at the nightstand between the two beds he says:] Some of the more, I suppose, negative aspects of architectural design are prevalent in a lot of nursing homes and facilities and needs to be addressed. Such as, there are sharp corners in this bedside cupboard which will the injure the Huntington's patient due to their movements. A better design would be to eliminate such bedside cupboard and put up behind the bed head a large mantle piece where personal belongings, photographs, nick knacks, and memorabilia will be placed to remind the patient of his or her identity. The drawers and doors will be behind the bed so injury is minimized. [Dr. Chiu is now in the bathroom.] Over here we have a basin that has two controls for hot and cold temperature. It would be much easier if the Huntington's patient only had to worry about one control in controlling the temperature and we add to this a thermostatic control device so they don't scald themselves. Then they don't have the anxiety of burning themselves and be able to control the water temperature more successfully. One good feature in this bathroom is that the patient's personal items on the shelf are clearly visible so the patient has this personalized feeling about the bathroom. As far as the toilet is concerned, the standard design of toilets in facilities are always a disaster both for the patient as well as for the poor nurses who look after for them. For example, it's very difficult for a nurse, or two nurses to go on either side of this bowl to assist the patient in coming up or going down. In designing, there needs to be maximum space on both sides, not just one side of the patient to assistance on both sides. There are facility available that you can bring down here, grab bars, that come from the back of the wall to the front to give patients a grab and a lift and a push. [Looking at the grab bar mounted on the wall he says:]These side bars are not always appropriate if you want to give maximum space to the patient and to the nurses who care for the patients.
[Dr. Chiu is now back in his swivel chair.] One of the major issues in Huntington's Disease is eating as I've mentioned before. In order to enhance eating we have to attend to their dental health. People frequently forget that there is no pleasure eating if your teeth hurt. Therefore one of the earliest things I instruct my Huntington's patient to do, after seeing me, is to make the next appointment with the dentist, not with me, to get their teeth in good order and don't allow any teeth to be extracted unless it is absolutely necessary. Dental health is very important. Frequently we forget about that.
Another very important issue with our people, is that for the female patients, so often their gynecological health has not been attended to. Because they've got Huntington's Disease people tend to forget that they are woman as well.
Huntington's patients need to be encouraged to stay mobile and active as long as possible. They need to be fit. We have workouts. They should have workouts too. But people say- We cannot improve their function. That is not the issue. The issue is quality of life. They need to be given the ability to have exercises so they will feel fitter and psychologically better.
Their intellectual needs to be addressed. Maybe they cannot read as well as they ought to, or as they used to but frequently we encourage them to read, to watch television, listen to the radio, and in particular, musical appreciation. Our experience is that the Huntington's patient retains the ability to appreciate music right to the end. It may be that the part of the brain controlling music ability and music appreciation is not affected by Huntington's Disease. We don't know where that part of the brain is, but where ever it is they appreciate music. That is a very important part of their quality of life.
They need companionship. They need new faces around them all the time. We need to bring in volunteers. We need to bring in all sorts of people. We need to take the Huntington's patient into the community to share the life of the community. Never mind the stigma. Never mind the funny looks. They need to deal with the world at large and receive that kind of relationship and that kind of social life that everybody has.
Their spiritual life needs to be attended too. They need to be able to deal with the potential and the reality of their own death, and deal with it not only in a psychological manner, but in a social manner and in a spiritual manner.
I also want to address the issue of the Huntington's Disease patient who is in "care." The family attitude towards the person is important. Frequently families have difficulty letting go of the patient. They have had the patient for so long, they have cared for them so long they have become intermeshed in the relationship with the patient. We need to let the patient go. We need to delegate our caring responsibilities to the professional carers- not allow them to be our substitute because this means you hand over everything to your substitute. But delegate, so that you yourself take responsibility and share the responsibility with the professional carers. That also means that you don't scapegoat, you do not compete with them, but be patient with your delegates to care for them. You will have also to help them deal with some of the problems which are new to them. The doctors and nurses and therapists are just beginning their journey in caring for the Huntington's Disease person. Whereas the family members have 20, 30, 40 years of experience. You need to pass this experience on to the professional carers.
We need to help each other in caring. We need to give each other the ideas. Frequently, the junior nurses are reluctant to come up with some ideas in case it sounds crazy. Sometimes the craziest ideas become good ideas. We need to be open and say. Hey, there is another way of dealing with this problem. There are other ways that come from common sense, not necessarily from textbooks. The person with the highest education may not necessarily be the person to come up with the best ideas to provide a better quality of life for our people. For what you've learned you share with each other. So, a lot of things I have learned, I learned from the patient, I've learned from the families, I've learned from other people who have taken care of the patient in an institutional setting, or in a community setting.
Sometimes I'm asked the question: "At what stage of the condition should a Huntington's Disease person be admitted into residential care?" I don't have any stages. I do not follow the defined five stages as a decision for admission to residential care. The decision is based on the need of the individual, the need of the family, and the final criteria- if this person comes into residential care am I giving him or her a better quality of life, irrespective of the stage of the disease. If the answer is yes then that person shall be admitted. If the answer is no, no matter how late stage that person might be, I don't think it's proper to inflict upon that individual a worst quality of life in a residential facility. So I go back to the same criteria again- quality of life! [Phds are shown playing Yahtzee and walking. Someone is playing the piano in the background. Next we see Dr. Chiu walking into the chapel. He says:]
To sustain the spiritual life of our Huntington's Disease persons is very important because this is where they will find strength to deal with their disabilities and also to assist the family in handling this very difficult situation. In such a facility as the Cooke Center, we have a multi-faith chapel to attend to those needs. It not only serves the needs of the Catholic population, the Protestant population, but also our Jewish brethren who develop Huntington's Disease. In this way we can help our people to maintain peace and joy in their life in spite of Huntington's Disease.
We need to give our patients back their right to determine what they want for themselves. Now, sometimes that is only lip service. However, we need to take this seriously. We need to work with our people to say: Is this what you want for your quality of life? Take for example, in Melbourne we have what we call a high risk-taking policy. We negotiate with our patients and say: Do you want to eat by mouth? Do you want to walk by yourself? And we negotiate if they deteriorate and we will say: Okay, at this stage, do you want now to receive some kind of assistance? Of course we do a lot of persuading when we feel that any future expression of risk taking may provide some damage. That's why we insist there are no tubes because we want them to have the pleasure of eating and take what of the risk that is consistent with safety. And, they have taught us that it is possible. However, in this country of United States, it is very difficult to do that with out confronting some regulations. We must work creatively to get around or change those regulations. We must not be bound down by regulatory restraints so that our patients can have a better quality of life. We must not allow the bureaucrats to dictate to our patients and make them more dependant than what they are. We may have to be advocates on their behalf to change the regulations. We Australians are rather irreverent the way we approach our authority figures. And I would say if the bureaucrat is wrong you change them. We must learn from our people how they want quality of life for themselves.
Another strategy I like to share with you. In working with Huntington's Disease persons we need to take an interdisciplinary approach. By that I mean we share with each other our skills and train each other to be minimally competent in our own discipline. I have been taught very well by physical therapists, occupational therapists, and music therapists in what they do. It is important to remember, particularly in a residential setting that staff are not on seven days a week, particularly therapy staff. On weekends the physical therapists and occupational therapists are not on duty and frequently on the weekend the patient will loose what they have learned unless the staff on the weekend has been taught by the physical therapist and the occupational therapist to continue those strategies over the weekend. That requires an interdisciplinary approach so that each person can help each other to make the best for the patients. More than just multidisciplinary or cross disciplinary, it must be interdisciplinary.
We need to remember, if we are going to give our patients that amount of activity they will get very tired. They need time out. In Australia we have this interesting phenomena called the "sickie," which means that if I want to take a day off I tell the boss I'm taking a "sickie." I'm not sick, I just want the day off and that is counted against your time off. It is important that if our people are tired from all of their activity that we give them time off. What we do is put them to bed and pamper them for a day. The next day they get up and get on with life. That is also part and parcel of our attitude that they are not sick, they need to get up and get on with life but they are allowed like we are, to have a day off.
We also have to remember, like I said before, not everything that happens to Huntington's Disease person is Huntington's Disease. Any sudden decline in the condition is not necessarily HD. It's usually due to an infection but can be due to the drugs we prescribed or it may be due to a change in the physical condition due to other illnesses and very importantly, due to depression. Not everything that happens to an HD person is due to HD!
Our people need a circle of friends, a circle of companions, a lot of recreation. I would encourage you to think creatively of what kind of recreational activity we can bring to bear to our people. For instance, in New York the Cooke Center has a huge front yard called Central Park. What our people can do in Central Park is only limited by muggers and your imagination. So you can use the environment to the best advantage for our people.
There are other issues involved such as medication. I'm constantly asked: "What are the best medications?" I think we need to remember medication is not the ultimate solution for HD. I would go for environmental solutions first of all. If there's a problem in Huntington's Disease you can usually find a creative environmental solution for the problem. The next strategy: I would look for a psychological solution to the problem. Because there are lots of psychological directions between the person, within the person, and with staff members. The next thing I would look at is the kind of social interaction in the facility. We want to create a family atmosphere for our people. If we can have a family atmosphere, a genuine family atmosphere, we will have fights. Families do fight. As a result of some of the social interactions. Some of the problems in residential care are due to these kind of difficulties. Medication doesn't often help. Having gone through 1) environmental; 2) psychological issues; 3) social interaction issues, then we can go for 4) the medical or pharmacological solution. It may be we have to exercise all four strategies but we must not just depend on medication as a solution.
So, finally, I'd like to remind everybody the attitude you take about Huntington's Disease is, first of all- quality of life, secondly, enhance the ability that our people have, and thirdly, I'd like to give you a riddle: When a glass is half full of water is it half full or half empty? I'd like you to think of our Huntington's Disease family members as half full, rather than half empty!
| "More importantly, the HD family has the right to all available care, not the privilege- the right." |
It will be a happy day when this film is no longer needed. When science has finally developed a cure for HD, or at least a medicine to arrest it's effect. In the meantime though, as we've heard from Dr. Chiu, caring comes before curing when there's no cure available. More importantly, the HD family has the right to all available care, not the privilege- the right. You can exercise this right by keeping fully informed of developments on HD and its care, and the best way to do that is to make and maintain contact with the Huntington's Disease Society of America. Thanks very much.