{"id":18302,"date":"2019-08-06T17:01:29","date_gmt":"2019-08-06T22:01:29","guid":{"rendered":"http:\/\/thepapergown.zocdoc.com\/?p=18302"},"modified":"2023-03-03T15:33:49","modified_gmt":"2023-03-03T20:33:49","slug":"do-you-know-how-a-living-will-works","status":"publish","type":"post","link":"https:\/\/www.zocdoc.com\/blog\/guides\/do-you-know-how-a-living-will-works\/","title":{"rendered":"Do You Know How a Living Will Works?"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">Shirley Rees had told her children not to take any <\/span>\u201cheroic measures\u201d if she ever became seriously ill. <span style=\"font-weight: 400;\">But it was only when doctors discovered kidney cancer that Shirley, then 83, created a formal advance directive, a document that explains to healthcare providers and loved ones how you\u2019d like to be treated if you can\u2019t communicate your preferences yourself. Shirley and her daughter, Rhonda, went through the form together right before Shirley underwent surgery to remove her kidney. While the operation was successful, it resulted in complications that left Shirley dependent on dialysis, life support, a breathing machine and a feeding tube.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Rhonda told the doctor to do what he could to help her mother live, but her brother disagreed; he didn&#8217;t think Shirley would want to live in her condition<\/span><span style=\"font-weight: 400;\">. They consulted Shirley\u2019s advance directive,<\/span> <span style=\"font-weight: 400;\">but didn&#8217;t find the clear answer they were looking for. Instead, the directive seemed to contradict itself: Shirley had checked the box saying she wanted doctors to try to do everything possible to help her, but she&#8217;d also indicated that, should she end up on life support, she did not want to live.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Shirley was also still fully conscious, using nods, hand squeezes and blinks to communicate with her daughter. During this time,<\/span><b>\u00a0<\/b><span style=\"font-weight: 400;\">Rhonda says, Shirley \u201cchanged her mind from her advance directive. She could no longer talk, walk, eat or breathe properly on her own, but she did want to keep going and live.\u201d<\/span><\/p>\n<blockquote><p><span style=\"font-weight: 400;\"> \u201cPick the person who would be most comfortable making sure your wishes are carried out.&#8221;<\/span><\/p><\/blockquote>\n<p><span style=\"font-weight: 400;\">A psychiatric evaluation supported Rhonda\u2019s determination that Shirley wanted to keep going, but Rhonda faced criticism from nurses, hospital staff and her brother for her decision. \u201cPeople thought I was a cruel daughter to keep her living, but this is what she wanted,\u201d says Rhonda, who acted as her mom\u2019s healthcare advocate until Shirley went into a coma and died three months later.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cWhen we filled out the advance directive, we didn&#8217;t expect to face anything quite like this. These forms are complicated. You need to take your time filling them out,\u201d she says, adding that, in the end, the directive helped her mother live longer. \u201cIf it wasn&#8217;t for that document, it would have been much harder to prove that my mother wanted the hospital to try various measures to help her.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Nobody wants to think about death or critical illness. But taking the time to organize advance care planning and talk to your loved ones about your (and their) wishes can save a lot of heartache and headache. Here&#8217;s what you need to know<\/span> to protect yourself and your family.<\/p>\n<h2>What is advance care planning?<\/h2>\n<p><span style=\"font-weight: 400;\">\u201cAdvance care planning is a process where you can share some of your wishes and the things that are important to you if you are unexpectedly in an accident or diagnosed with a serious illness and can&#8217;t speak for yourself,\u201d explains Jon Radulovic, vice president for the <\/span><a href=\"https:\/\/www.nhpco.org\/patients-and-caregivers\/advance-care-planning\/\"><span style=\"font-weight: 400;\">National Hospice and Palliative Care Organization<\/span><\/a><span style=\"font-weight: 400;\">.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">This process usually includes naming a healthcare power of attorney and writing an advance directive, also called a living will. Your healthcare power of attorney, or healthcare proxy, is the person you identify to speak to clinicians on your behalf if you can&#8217;t. This could be a spouse, partner, parent, child or friend. \u201cPick the person who would be most comfortable making sure your wishes are carried out,\u201d Radulovic says.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">A directive can detail your desires, meaning both what you do and don&#8217;t want to happen to you. It can cover a wide range of preferences, such as:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">The conditions (if any) under which you want to be put on a ventilator for breathing or have a feeding tube put in.<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">A \u201cdo not resuscitate\u201d order.<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Instructions for the music you want to play in your hospital room.<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">A request to have a chaplain visit your bedside.<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">A list of family members and other people you do or don\u2019t want in your hospital room.\u00a0<\/span><\/li>\n<\/ul>\n<h2>Who needs advance care planning?<\/h2>\n<p><span style=\"font-weight: 400;\">It\u2019s worth designating a healthcare proxy at any age, especially if you want to choose someone other than a spouse, adult child or parent, who are typically the default options if no one&#8217;s named. If, like <a href=\"https:\/\/www.census.gov\/library\/stories\/2018\/11\/cohabitaiton-is-up-marriage-is-down-for-young-adults.html\">15 percent of 24- to 35-year-olds<\/a>, you live with a partner but aren&#8217;t married \u2014 and especially if you cohabit with children<\/span><span style=\"font-weight: 400;\">, like <\/span><a href=\"https:\/\/www.pewsocialtrends.org\/2018\/04\/25\/the-changing-profile-of-unmarried-parents\/\"><span style=\"font-weight: 400;\">35 percent of unmarried parents<\/span><\/a><span style=\"font-weight: 400;\"> \u2014<\/span><span style=\"font-weight: 400;\"> you need to explicitly name your common-law spouse as your healthcare proxy. Otherwise, they won&#8217;t be chosen to make decisions for you.<\/span><\/p>\n<p>It&#8217;s also important to discuss your wishes for care if you get sick or have a serious accident, although there\u2019s no hard-and-fast rule regarding the right age to put your wishes in a legally binding document.<\/p>\n<p><span style=\"font-weight: 400;\">\u201cNot every young person needs or should have a detailed living will,\u201d says Dr. Joanna Hart, assistant professor of medicine at the <\/span><a href=\"http:\/\/pair.upenn.edu\/\"><span style=\"font-weight: 400;\">Palliative and Advanced Illness Research Center<\/span><\/a><span style=\"font-weight: 400;\"> at the University of Pennsylvania. \u201cBut it could represent your values.\u201d<\/span><\/p>\n<blockquote><p><span style=\"font-weight: 400;\">\u201cWe are sort of a death-denying society.&#8221;<\/span><\/p><\/blockquote>\n<p>\u201cRepresenting your values\u201d might mean explaining that, to you, \u201cliving\u201d means having the capacity to make decisions independently, or recognize and interact with your family, or continue to do the activities you love, such as hiking and camping \u2014 and that if you lose that capacity, you\u2019d prefer to decline medical care.<\/p>\n<p><span style=\"font-weight: 400;\">Radulovic recommends having a living will in place when you have children. Also, revisit the directive anytime you hit a healthcare milestone or experience something that changes your values and priorities. For example, going on Medicare or receiving a new, serious diagnosis might warrant a directive review. And even if your health doesn&#8217;t change, every couple of years, you should make sure that the people closest to you and your healthcare provider know your current wishes.<\/span><\/p>\n<h2>Why don&#8217;t most people have an advance care directive?<\/h2>\n<p><span style=\"font-weight: 400;\">As important as these documents and conversations are, few Americans have them. According to the <\/span><a href=\"https:\/\/www.healthaffairs.org\/doi\/abs\/10.1377\/hlthaff.2017.0175\"><span style=\"font-weight: 400;\">most recent data<\/span><\/a><span style=\"font-weight: 400;\">, only about one-third of Americans have any sort of advance directive.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cWe are sort of a death-denying society,\u201d Radulovic says. \u201cIn some cases, people don&#8217;t think it will happen to them. In other cases, people think it&#8217;s disrespectful to think about what their aged mother would want at the end of her life.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The forms can also be confusing, too. <\/span><a href=\"https:\/\/www.jabfm.org\/content\/32\/2\/168\"><span style=\"font-weight: 400;\">University of Oklahoma College of Medicine researchers<\/span><\/a><span style=\"font-weight: 400;\"> recently found that a simple \u201cFive Wishes\u201d form was almost four times more likely to be accepted by patients, compared to the<\/span> <span style=\"font-weight: 400;\">standard<\/span> <span style=\"font-weight: 400;\">20-page Oklahoma Advance Directive.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Furthermore, \u201cclinicians sometimes struggle when helping people and guiding them through advance care planning, lacking the communication skills to do so well,\u201d says Hart. \u201cIn some situations, unless someone has a clear trigger to do it, we often put it off to address more pressing needs during office visits.\u201d<\/span><\/p>\n<blockquote><p><span style=\"font-weight: 400;\">&#8220;It is much more meaningful if the advance directive specifies the person&#8217;s values and priorities, rather than specific treatments the person does or does not want.\u201d<\/span><\/p><\/blockquote>\n<p><span style=\"font-weight: 400;\">In January 2016, Medicare began reimbursing physicians for visits strictly for discussing advance care planning. However, a <\/span><a href=\"https:\/\/jamanetwork.com\/journals\/jamainternalmedicine\/article-abstract\/2727847\"><span style=\"font-weight: 400;\">2019 study<\/span><\/a><span style=\"font-weight: 400;\"> found that most clinicians aren&#8217;t billing for this, and it\u2019s not clear whether they\u2019re having those conversations or not.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Lastly, because the advance directive is considered a legal document, many people complete one as part of their estate planning with a lawyer. \u201cBut this tends to be a rudimentary document,\u201d says Hart, \u201cand it may not be a nuanced enough discussion to personalize it to a person&#8217;s health situation.\u201d<\/span><\/p>\n<h2>How to set up your advance care planning<\/h2>\n<p><span style=\"font-weight: 400;\">If you feel it&#8217;s time to address your medical wishes, either make an appointment to speak with your primary care physician or find your state&#8217;s directive online. (The <\/span><a href=\"https:\/\/www.aarp.org\/caregiving\/financial-legal\/free-printable-advance-directives\/\"><span style=\"font-weight: 400;\">AARP has a list<\/span><\/a><span style=\"font-weight: 400;\">, or search <\/span><a href=\"https:\/\/www.nhpco.org\/\"><span style=\"font-weight: 400;\">NHPCO.org<\/span><\/a><span style=\"font-weight: 400;\"> for your state&#8217;s advance directive.)<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Whatever you do, put some thought into it and be sure you understand what you are filling out. \u201cTalk to your family and ask questions of your healthcare provider,\u201d says Radulovic, who also recommends <\/span><a href=\"https:\/\/theconversationproject.org\/\"><span style=\"font-weight: 400;\">The Conversation Project<\/span><\/a><span style=\"font-weight: 400;\"> as a resource. Hart suggests <\/span><a href=\"https:\/\/www.ourcarewishes.org\/\"><span style=\"font-weight: 400;\">Our Care Wishes<\/span><\/a><span style=\"font-weight: 400;\">, which \u201cwalks you through thinking about your life priorities and how those match up with your current state of health.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cOne of the difficulties of advance care planning is that many people are unable to anticipate the exact circumstances in which their surrogates would need to make decisions on their behalf,\u201d she adds. \u201cTherefore, it is much more meaningful \u2014 and likely to be effectively used by clinicians and surrogates \u2014 if the advance directive specifies the person&#8217;s values and priorities, rather than specific treatments the person does or does not want.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">For example, Shirley Rees could have said, &#8220;If I am conscious, even if I am unable to interact, I value life-extension, even if that means I might be uncomfortable and unable to live independently&#8221; and &#8220;If I am unconscious, I value control of pain and discomfort, even if doing that shortens my life.&#8221; Be as detailed as possible, modifying the living will as you wish.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Once you have your living will, share it with the people in your life and any relevant doctors, keeping a copy with your electronic medical records if possible. <\/span><a href=\"https:\/\/link.springer.com\/article\/10.1007\/s11606-018-4744-8\"><span style=\"font-weight: 400;\">Only 16 percent<\/span><\/a><span style=\"font-weight: 400;\"> of patients who visit preoperative testing clinics before surgery have an advance directive in their digital records.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">You can also change your living will if you have a change of heart when you become ill. But don&#8217;t forget to revisit your advance directive as your health changes. And talk to your healthcare proxy so that they know what to do if you change your mind and can&#8217;t communicate.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cWhile it&#8217;s difficult to initiate the conversation, it will pay off when you find yourself in the hallway of a hospital trying to figure out what your loved ones would have wanted,\u201d Radulovic says. \u201cOnce you are in a medical crisis, that&#8217;s a hard time to learn about your options and figure out what you want.\u201d<\/span><\/p>\n<hr \/>\n<h1 class=\"p1\" style=\"text-align: center;\"><span class=\"s1\">Ready to book a doctor&#8217;s appointment? Visit <a href=\"https:\/\/www.zocdoc.com\/\"><span class=\"s2\">Zocdoc.<\/span><\/a><\/span><\/h1>\n","protected":false},"excerpt":{"rendered":"<p>Only 1\/3 of Americans document their healthcare wishes. Here&#8217;s why more people should consider advance care planning, and how to go about it. <\/p>\n","protected":false},"author":40,"featured_media":18304,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[227],"tags":[96],"class_list":["post-18302","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-guides","tag-caregiving","reviewer-dr-nassim-assefi"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Do You Know How a Living Will Works? - Guides<\/title>\n<meta name=\"description\" content=\"Only 1\/3 of Americans document their healthcare wishes. 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