事件记录
面试官: 这是一个大发娱乐不习惯进行或开始的对话. 我说的是为临终关怀做计划, 如果你因为诊断出患有 阿尔茨海默氏症或其他类型的痴呆症, 对于你自己来说，这就变得更加复杂了, 或者是否是你所爱的人被诊断出患有这种疾病.
帕金森病或痴呆诊断后的临终计划
因此，为了大发娱乐这个过程，大发娱乐正在与 卡拉Dassel. She's in the Gerontology Interdisciplinary Program in the University of Utah Health College of Nursing. 她的研究小组开发了一种叫做“LEAD指南”的东西,，即早期阿尔茨海默氏症和痴呆症的生活规划. 所以每个人都应该有一个临终关怀计划. 但据我所知, 如果你患有阿尔茨海默氏症或某种痴呆症, 这个临终关怀计划看起来会有点不同. 解释一下为什么会这样.
卡拉: There's more of a time crunch in a broader context within Alzheimer's disease or other types of dementia where there is a limited window where you're able to engage in your family member with dementia and learn about their preferences and wishes before they get too cognitively impaired where they're no longer able to have those conversations.
面试官: 哇. So after the diagnosis comes in and you find out that maybe a loved one or even yourself has dementia, 这段对话应该多快开始?
卡拉: 越早越好. It shows that you have better care outcomes as far as having your medical decisions match your preferences if you have those discussions and document it. 如果你不想住院，你就不太可能住院. You're less likely to be shuttled in between nursing homes and hospitals and rehab facilities. And it's a better outcome for the people making the decisions for you because they don't have the burden of trying to guess what mom would want.
LEAD指南
面试官: 当谈到高级护理计划时，我认为这很有趣. 我总是倾向于只考虑医疗偏好, 就好像这是我想要做的或者不做的. 但它不止于此. 《大发娱乐》是基于你所说的基于价值的决策. 解释一下这是什么意思.
卡拉: 是的. So sometimes just checking a box of whether you want a ventilator or not doesn't give you the full context of end-of-life values and preferences. 在痴呆症方面, 特别是, 有些人可能身体非常健康，但缺乏决策能力. 所以你需要决定他们是否需要长期护理, 这在家里会发生吗? 这种情况会发生在养老院吗? 你需要决定他们的死亡地点, 因为痴呆症患者在确诊后平均能活8年, 但它们可以活到20年. And so there's a lot of care decisions and medical decisions that need to take place within that long death trajectory.
面试官: 所以这可能是一个艰难的讨论. So I guess I'm thinking from the perspective of maybe a family member wanting to bring it up after that diagnosis. Are there other reasons why it's just really important to have that discussion? 再说一次，这不是大发娱乐经常讨论的话题.
临终计划的重要性
卡拉: 正确的. 这可不是你常讨论的话题, and I think just knowing that your window is limited puts the time pressure on having these discussions within a context of progressive dementia. And I like to frame it with families as it is beneficial for the person with dementia and the family members to have this discussion for two reasons.
一个, the person with dementia has the comfort and peace knowing that they were able to communicate what they want currently and then also what they want when they have advanced dementia. 可能会有所不同. They may want something different today versus five years from now when they're in a nursing home. And so being able to communicate that can bring a lot of peace and comfort to the individual.
然后，家庭成员也可以这样说：“帮我个忙. 我想执行你的价值观和偏好, 但我需要和你谈谈，这样才能做到." And that would relieve a lot of burden or guilt or disagreements among family members. 所以这是对家庭的一种服务.
面试官: I was surprised to see in the research that you and your team did to make this guide that, 对一些人来说, 这种情绪负担可能持续数月甚至数年, 照顾者的情感负担.
卡拉: 正确的. If you're in a situation where you really don't know what your husband or partner wants, 或者爸爸妈妈，你必须, 这是医院的紧急情况，你必须做出决定, 多年来，你可能会质疑自己是否做出了正确的决定. 可能会有很多挥之不去的内疚和不知道的压力.
临终关怀和临终计划的区别
面试官: 是的. 所以我在看指南. 我真正喜欢的是它看起来很简单. And this is a point where I want to say this does not replace, if I understand correctly, an 先进的指令. 这不是一个高级指令. 这适用于.
卡拉: 正确的. 这是一个补充指南，不具有法律约束力, but it provides additional information about a patient's values and preferences and some of those questions that are unique to dementia, 比如长期护理地点以及对死亡地点的偏好.
面试官: It starts out with a little checklist of the end-of-life documentation that you should have, 这很好，因为这可能会让人困惑. 我喜欢这样. 然后 when you start getting into some of these end-of-life value questions, I found this fascinating because I think we put ourselves in the situation by not having these conversations. 就像第一个问题, 我担心成为家人或亲密朋友的经济负担. For my mom, like I would spend the money to continue to make her live if that's what she wanted. But then how often is there a disconnect that that's not actually what the person wants?
卡拉: 正确的. 所以大发娱乐有很多关于价值观的问题，它们有助于大发娱乐做出决定. So if you know that your mom is really concerned about being a financial burden, 这样就能帮你决定将来如何照顾她了. 无论是情感上的负担还是身体上的负担都是如此. 你知道, if your mom's really concerned about burdening you physically with day-to-day care tasks, then maybe that makes you feel a little more comfortable about placing her in a 24-hour skilled-care facility when that time comes, 知道那是你妈妈的价值.
临终计划的好处
面试官: 你见过实际操作吗?
卡拉: 是的. 所以大发娱乐有 . . . 这是本指南开发过程的一部分, 大发娱乐与健康的成年人进行了多次焦点小组讨论, 照顾痴呆症患者的人, 以及患有早期痴呆症的人. 大发娱乐得到的反馈非常有价值，“哇，这太棒了. 我没有想过这个问题.或者，“我从来不知道妈妈这么在乎不要死在家里。.“所以这确实提出了很多他们以前没有讨论过的问题.
面试官: 是啊，太棒了. 大发娱乐还有什么需要讨论的吗? 我认为这是一个非常棒的工具，尤其是对某些人来说 . . . 我知道大发娱乐该谈什么了. 大发娱乐得谈谈患有痴呆症的人, 不仅仅是诊断后的恶化, but end-of-life wishes tend to be different for patients that know that they're going to have dementia versus maybe somebody that knows that they're going to have cancer.
卡拉: The dementia preferences were different from those other ones as far as not wanting medical treatment interventions in a situation of dementia versus cancer. 然后, 不愿意死在家里, 在养老院或医院里死去会更舒服. And so a lot of the qualitative data that we got showed that the loss of sense of self, 独立, 记忆真的决定了生活的质量. 人们一般都不想延长这种寿命.
面试官: 理解. 我的最后一个问题是，这是一个很棒的工具. 这是任何人都可以用来计划生命终结的东西吗, 即使不是阿尔茨海默病或痴呆症? Because I know it was specifically designed for that, but could it be used for other cases as well?
卡拉: 当然. So people may lose the ability to make decisions at the end of life for a variety of reasons, 由于其他医疗条件, 头部外伤. 因此，您可以使用本指南来大发娱乐进行任何类型的高级护理计划. 这只是为了方便对话.
更新日期：2022年4月29日
最初发布日期：2020年5月13日