Roger Stancliffe on end of life research for people with disabilities
It is Disability Pride Month, which celebrates all disabled people and commemorates the passing of the Americans with Disabilities Act in July 1990. University of Minnesota Professor Roger Stancliffe’s research focuses on making lives better for people with intellectual and developmental disabilities especially when it comes to the end of life. He joined host Cathy Wurzer to talk more about his work.
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Audio transcript
CATHY WURZER: You might know that this is Disability Pride Month, which celebrates all people living with disabilities. The month also commemorates the passing of the Americans with Disabilities Act in July of 1990. University of Minnesota Professor Roger Stancliffe's research focuses on making lives better for people with intellectual and developmental disabilities, especially when it comes to the end of Life The professor is with us right now. Welcome to Minnesota Now.
ROGER STANCLIFFE: Hi, Cathy. Good to be with you. And great to have the opportunity to talk about this important topic, made all the more important by the fact that we so rarely talk about it.
CATHY WURZER: Exactly. There isn't a lot of research done on people with disabilities. How do you become interested in this subject? I'm curious.
ROGER STANCLIFFE: Well, in terms of end of life, a great colleague and former PhD student of mine, Michelle Wease, back in Australia, you can hear that I've got an Australian accent, was supporting her father as he was dying. And she's also a disability researcher and just started thinking about, how do people with disability and their families experience this? And for the last 15 years or so, we've been working on understanding that experience.
CATHY WURZER: Your most recent research zeros in on end of life issues, things like suicide, DNR-- do not resuscitate orders-- advanced care directives, accessible funerals. And you call these topics under-researched. Why do you think that is?
ROGER STANCLIFFE: Well, partly because of what I've just mentioned-- the fact that death and dying are taboo topics in our society. So we don't talk about them. And then when you add that to disability and intellectual and developmental disability where people are less sure how to approach these issues, it becomes a little bit more difficult.
CATHY WURZER: I'm betting many doctors and caregivers have not talked to a person with intellectual or physical disabilities about their dying and death. What are the barriers to having these conversations? What framework can be used to enter into these conversations?
ROGER STANCLIFFE: Well, I think one of the barriers is that particularly for people with intellectual disability, they may have some issues with understanding and with communication. And many clinicians don't have the experience or skills to help with that communication. So sometimes it's important to have a support person present to help to ensure that the person understands what they're being told and to enable them to ask questions.
That's one of the issues that people with intellectual and developmental disability confront in all parts of life, including the end of life.
CATHY WURZER: People with intellectual disabilities are more likely, I understand, to have unidentified health needs. And it makes it harder to recognize when they're approaching the end of their life, which means they have less time to plan, and get support, and that kind of thing. What should be done about that?
ROGER STANCLIFFE: Well, you're correct-- people frequently have diagnosed conditions, but also some undiagnosed conditions-- but probably even more importantly like that is the conspiracy of silence around death. Very often, people feel uncomfortable in talking about those issues and don't know how to approach it the person with disability, and they deal with it through avoidance and exclusion. So a very common experience for somebody who has a non-terminal condition is that they may be told that they're sick, that they're not told that they're dying.
And so they're excluded from the opportunity to say goodbye, to plan, to think about what they want to do with the rest of their life if they simply don't know that this health condition is going to end with their death.
CATHY WURZER: I had a friend who actually had several disabilities and he said, just be honest. Just be honest with me. Tell me the truth. And I would think that you would agree with that.
ROGER STANCLIFFE: Absolutely. And equally importantly, tell it to me in a way that I can understand.
CATHY WURZER: Yes, exactly. Your research also is quite interesting. And I did not know this. Your research indicates that people with disabilities are often excluded from traditional funeral rituals. Can you tell me more about that?
ROGER STANCLIFFE: Yes. Sadly, that's the case. Just imagine for a second what that must be like as a family member where, for whatever reason, you don't get to participate in that really important ritual and say goodbye to somebody you love and you spent your life with. Sadly, we came across a number of examples like this in our research back in Australia, and I'm sure it also happens in the United States that families feel uncomfortable, don't know what to do, are worried that the person will become upset, and they deal with that not by including and supporting them, but by saying, well, maybe you shouldn't come to the funeral.
And we have examples of that in the book that we published recently where a woman in Australia, who's called Gina in this particular example, was excluded from her mother's funeral, and for many years after, she kept bringing up that concern because she was distressed by it. And it was only after people listened and took her view seriously and gave her the opportunity to go and visit her mother's grave, and spend time there, and actually have a conversation with her mother, as it were, that she started to resolve those feelings-- all of which could have been avoided if she had been included in the normal way.
CATHY WURZER: As I mentioned, a lot of these problems are because people just don't know how to open the conversation, right? And as I said in the introduction, most people don't even know how to enter into these conversations and do them with some meaning. Are there resources available? Have you come across resources, good ones, in your research where folks who have a friend or a family member who has disabilities, where they can maybe tap into some good information?
ROGER STANCLIFFE: Well, fortunately, that's absolutely the case. And unfortunately, it seems that people don't know about these resources. But there are lots of wonderful resources, many designed specifically to assist people with intellectual and developmental disability. One example is the British series Books Beyond Words, which, for example, one title is When Mom Died.
And these are books that have illustrations in them of what happens around dying, and death, and funerals, and the like, without any words, so that you can share that with the person with intellectual disability and tailor the specifics to that person's own situation so it makes sense to them. And there are lots of other wonderful resources-- resources to enable people with intellectual disability to plan what they want in the final years before they die.
So yes, there are lots of resources. As I mentioned, the book that we published recently, each of the chapters has a list of relevant resources. And we hope that that will be helpful to people to give them a starting point in having these conversations with a family member or person they support who has an intellectual disability.
CATHY WURZER: All right. We look forward to that. Professor, thank you for your time today.
ROGER STANCLIFFE: It's been a pleasure.
CATHY WURZER: Professor Roger Stancliffe is a Senior Research Associate at the University of Minnesota's Institute on Community Integration.
ROGER STANCLIFFE: Hi, Cathy. Good to be with you. And great to have the opportunity to talk about this important topic, made all the more important by the fact that we so rarely talk about it.
CATHY WURZER: Exactly. There isn't a lot of research done on people with disabilities. How do you become interested in this subject? I'm curious.
ROGER STANCLIFFE: Well, in terms of end of life, a great colleague and former PhD student of mine, Michelle Wease, back in Australia, you can hear that I've got an Australian accent, was supporting her father as he was dying. And she's also a disability researcher and just started thinking about, how do people with disability and their families experience this? And for the last 15 years or so, we've been working on understanding that experience.
CATHY WURZER: Your most recent research zeros in on end of life issues, things like suicide, DNR-- do not resuscitate orders-- advanced care directives, accessible funerals. And you call these topics under-researched. Why do you think that is?
ROGER STANCLIFFE: Well, partly because of what I've just mentioned-- the fact that death and dying are taboo topics in our society. So we don't talk about them. And then when you add that to disability and intellectual and developmental disability where people are less sure how to approach these issues, it becomes a little bit more difficult.
CATHY WURZER: I'm betting many doctors and caregivers have not talked to a person with intellectual or physical disabilities about their dying and death. What are the barriers to having these conversations? What framework can be used to enter into these conversations?
ROGER STANCLIFFE: Well, I think one of the barriers is that particularly for people with intellectual disability, they may have some issues with understanding and with communication. And many clinicians don't have the experience or skills to help with that communication. So sometimes it's important to have a support person present to help to ensure that the person understands what they're being told and to enable them to ask questions.
That's one of the issues that people with intellectual and developmental disability confront in all parts of life, including the end of life.
CATHY WURZER: People with intellectual disabilities are more likely, I understand, to have unidentified health needs. And it makes it harder to recognize when they're approaching the end of their life, which means they have less time to plan, and get support, and that kind of thing. What should be done about that?
ROGER STANCLIFFE: Well, you're correct-- people frequently have diagnosed conditions, but also some undiagnosed conditions-- but probably even more importantly like that is the conspiracy of silence around death. Very often, people feel uncomfortable in talking about those issues and don't know how to approach it the person with disability, and they deal with it through avoidance and exclusion. So a very common experience for somebody who has a non-terminal condition is that they may be told that they're sick, that they're not told that they're dying.
And so they're excluded from the opportunity to say goodbye, to plan, to think about what they want to do with the rest of their life if they simply don't know that this health condition is going to end with their death.
CATHY WURZER: I had a friend who actually had several disabilities and he said, just be honest. Just be honest with me. Tell me the truth. And I would think that you would agree with that.
ROGER STANCLIFFE: Absolutely. And equally importantly, tell it to me in a way that I can understand.
CATHY WURZER: Yes, exactly. Your research also is quite interesting. And I did not know this. Your research indicates that people with disabilities are often excluded from traditional funeral rituals. Can you tell me more about that?
ROGER STANCLIFFE: Yes. Sadly, that's the case. Just imagine for a second what that must be like as a family member where, for whatever reason, you don't get to participate in that really important ritual and say goodbye to somebody you love and you spent your life with. Sadly, we came across a number of examples like this in our research back in Australia, and I'm sure it also happens in the United States that families feel uncomfortable, don't know what to do, are worried that the person will become upset, and they deal with that not by including and supporting them, but by saying, well, maybe you shouldn't come to the funeral.
And we have examples of that in the book that we published recently where a woman in Australia, who's called Gina in this particular example, was excluded from her mother's funeral, and for many years after, she kept bringing up that concern because she was distressed by it. And it was only after people listened and took her view seriously and gave her the opportunity to go and visit her mother's grave, and spend time there, and actually have a conversation with her mother, as it were, that she started to resolve those feelings-- all of which could have been avoided if she had been included in the normal way.
CATHY WURZER: As I mentioned, a lot of these problems are because people just don't know how to open the conversation, right? And as I said in the introduction, most people don't even know how to enter into these conversations and do them with some meaning. Are there resources available? Have you come across resources, good ones, in your research where folks who have a friend or a family member who has disabilities, where they can maybe tap into some good information?
ROGER STANCLIFFE: Well, fortunately, that's absolutely the case. And unfortunately, it seems that people don't know about these resources. But there are lots of wonderful resources, many designed specifically to assist people with intellectual and developmental disability. One example is the British series Books Beyond Words, which, for example, one title is When Mom Died.
And these are books that have illustrations in them of what happens around dying, and death, and funerals, and the like, without any words, so that you can share that with the person with intellectual disability and tailor the specifics to that person's own situation so it makes sense to them. And there are lots of other wonderful resources-- resources to enable people with intellectual disability to plan what they want in the final years before they die.
So yes, there are lots of resources. As I mentioned, the book that we published recently, each of the chapters has a list of relevant resources. And we hope that that will be helpful to people to give them a starting point in having these conversations with a family member or person they support who has an intellectual disability.
CATHY WURZER: All right. We look forward to that. Professor, thank you for your time today.
ROGER STANCLIFFE: It's been a pleasure.
CATHY WURZER: Professor Roger Stancliffe is a Senior Research Associate at the University of Minnesota's Institute on Community Integration.
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