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	<title>Compassion &#38; Choices &#187; living will</title>
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	<description>End-of-Life Choice, Palliative Care and Counseling</description>
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		<title>When Doctors Need E-mail Reminders to Talk to Patients About Death</title>
		<link>http://www.compassionandchoices.org/2013/01/09/when-doctors-need-e-mail-reminders-to-talk-to-patients-about-death/</link>
		<comments>http://www.compassionandchoices.org/2013/01/09/when-doctors-need-e-mail-reminders-to-talk-to-patients-about-death/#comments</comments>
		<pubDate>Wed, 09 Jan 2013 23:31:01 +0000</pubDate>
		<dc:creator>Sonja</dc:creator>
				<category><![CDATA[Advance Directive]]></category>
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		<category><![CDATA[end of life care]]></category>
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		<guid isPermaLink="false">http://www.compassionandchoices.org/?p=5788</guid>
		<description><![CDATA[by Lindsay Abrams The Atlantic January 7, 2013 You know how if someone e-mails you over and over, and doesn&#8217;t stop until you finally respond or just go ahead and do what they&#8217;ve been asking you to, it&#8217;s really annoying, but also a pretty good strategy on their part because they ended up getting what<span style="white-space:nowrap;">... <a href="http://www.compassionandchoices.org/2013/01/09/when-doctors-need-e-mail-reminders-to-talk-to-patients-about-death/" class="bn">more</a></span>]]></description>
			<content:encoded><![CDATA[<p>by Lindsay Abrams<br />
<em>The Atlantic</em><br />
January 7, 2013</p>
<p>You know how if someone e-mails you over and over, and doesn&#8217;t stop until you finally respond or just go ahead and do what they&#8217;ve been asking you to, it&#8217;s really annoying, but also a pretty good strategy on their part because they ended up getting what they wanted?</p>
<p>The same thing, it turns out, works with doctors. Only in this case what they&#8217;re being nagged about is having an important conversation with terminally ill patients that, let&#8217;s be honest, they shouldn&#8217;t have been avoiding or forgetting in the first place.</p>
<p>The number of patients with incurable cancer whose charts indicate whether or not they want to be resuscitated can be doubled, a new study in the <em>Journal of Clinical Oncology</em> found, provided doctors are sent e-mails reminding them to ask.</p>
<p>Per national guidelines, this conversation is supposed to occur when a patient&#8217;s prognosis is less than a year.<span id="more-5788"></span></p>
<p>Barring their ability to set up a Google alert for every time a patient&#8217;s given 12 months or fewer to live, researchers at the Massachusetts General Hospital cancer center in Boston rigged a system where each time a patient began a new round of chemotherapy, their oncologist&#8217;s inbox was spammed with messages reminding them to have The Talk. The e-mails got right to the point, beginning: &#8220;Your patient has recently been diagnosed with incurable lung cancer. If you have not already done so, this may be an appropriate time to begin a dialogue about his preferences for care at the end of his life.&#8221;</p>
<p>Doctors who ignored or deleted the first e-mail would continue to be inundated with reminders until they had filled out the section of their patient&#8217;s electronic health record that dealt with their final wishes.</p>
<p>The results were encouraging because, hey, here&#8217;s a simple and easy-to-implement system that can jump-start something that isn&#8217;t happening nearly as often as it should &#8212; pre-email alerts, fewer than 15 percent of the patients used as a control had documented their wishes. That said, the ultimate outcome of the emails was that after a year, a third of patients had their decision clearly stated in their electronic health records. That leaves the majority of the 100 test subjects &#8212; people with incurable lung cancer &#8212; for whom the end-of-life area of their file remained blank.</p>
<p>If a discussion isn&#8217;t had, patients will end up being subjected to aggressive life-saving measures they never asked for. Resuscitation efforts can be emotionally traumatizing for everyone involved, not to mention costly. Most people, once they&#8217;ve had everything involved explained to them, end up choosing not to have hospital staff attempt to prolong their life.</p>
<p>A 2012 report from the California HealthCare Foundation found that, while 80 percent of people said that if they were seriously ill, they&#8217;d want to discuss their end-of-life options with their doctor, only 7 percent had actually had this conversation.</p>
<p>When the conversation does happen, according to an editorial that accompanied the e-mail study, it&#8217;s usually during the stressful, painful, and confusing final hours of a patient&#8217;s life. The decision is wrested from the patient &#8212; or from a distressed family member called upon to act on their behalf &#8212; without anyone having the time to fully consider the implications.</p>
<p>A paradigm change seems urgently needed here, as places like The Conversation Project are trying to make the early and often discussion of end-of-life wishes more common practice. In the meantime, we&#8217;ll just need to hope doctors don&#8217;t figure out how to use their spam filters.</p>
<div></div>
<p>&nbsp;</p>
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		<title>Advance Care Planning Can Ease Difficult Decisions</title>
		<link>http://www.compassionandchoices.org/2012/12/11/advance-care-planning-can-ease-difficult-decisions/</link>
		<comments>http://www.compassionandchoices.org/2012/12/11/advance-care-planning-can-ease-difficult-decisions/#comments</comments>
		<pubDate>Tue, 11 Dec 2012 00:45:57 +0000</pubDate>
		<dc:creator>Sonja</dc:creator>
				<category><![CDATA[Advance Directive]]></category>
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		<category><![CDATA[unwanted treatment]]></category>
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		<guid isPermaLink="false">http://www.compassionandchoices.org/?p=5665</guid>
		<description><![CDATA[by David Wahlberg Wisconsin State Journal December 10, 2012 When patients near the end of life, many doctors say there’s nothing more they can do. But “there is so much we can do for people at the end of life,” said Dr. Jim Cleary, UW Health’s director of palliative care. Doctors can provide pain relief,<span style="white-space:nowrap;">... <a href="http://www.compassionandchoices.org/2012/12/11/advance-care-planning-can-ease-difficult-decisions/" class="bn">more</a></span>]]></description>
			<content:encoded><![CDATA[<p>by David Wahlberg<br />
<em>Wisconsin State Journal</em><br />
December 10, 2012</p>
<p>When patients near the end of life, many doctors say there’s nothing more they can do.</p>
<p>But “there is so much we can do for people at the end of life,” said Dr. Jim Cleary, UW Health’s director of palliative care.</p>
<p>Doctors can provide pain relief, comfort care and guidance to families, Cleary said.</p>
<p>“For a physician to say, ‘There is nothing else I can do,’ is really, I think, a neglect of their physician duties.”</p>
<p>Cleary’s comments are from “<a href="http://www.considertheconversation.org/">Consider the Conversation</a>: A Documentary on a Taboo Subject.” The 2011 film by two Wisconsin men has sparked an initiative to expand advance care planning around the state.</p>
<p>In the first phase of the effort, nurses, social workers and clergy at Madison’s health systems will begin offering discussions about end-of-life decisions to select groups of patients in March. Broader outreach is planned in 2014.</p>
<p>Instead of merely asking patients if they have living wills or health care power of attorney documents, hospitals and clinics will offer discussions about a variety of questions — from whether to resuscitate and ventilate to what kind of people, music and lighting patients want to be surrounded by when they approach death.<span id="more-5665"></span></p>
<p>John Maycroft, policy analyst at the Wisconsin Medical Society, said a showing of clips from “Consider the Conversation” to the society’s ethics council inspired the group to launch the effort, called Honoring Choices Wisconsin.</p>
<p>Michael Bernhagen and Terry Kaldhusdal made the film on a shoestring budget, with $43,000 in private donations. They’re working on a second film about the doctor-patient relationship.</p>
<p>Bernhagen, director of community engagement at Rainbow Hospice Care in Jefferson, became a hospice worker after his mother died from vascular dementia at age 81.</p>
<p>Kaldhusdal, a fourth-grade teacher in Genesee Depot, lost his brother to pancreatic cancer at 53.</p>
<p>The hourlong film explores why American patients and health care providers are often ill prepared for death. Advance care planning, the film suggests, can prevent unwanted procedures while giving people more control over their final days.</p>
<p>“If you talk with people at a time when they’re not dying and not in crisis,” Bernhagen said, “you can prevent a lot of unnecessary suffering that is certainly physical in nature but also emotional and spiritual and social and financial.”</p>
<p>Public television stations in 29 states have shown the film 366 times, Bernhagen said. It aired on Wisconsin public TV in August 2011 and is expected to be shown at the Beloit International Film Festival in February.</p>
<p>Honoring Choices Wisconsin is based on the Respecting Choices program started in 1991 at Gundersen Lutheran Health System in La Crosse. It’s also modeled after Honoring Choices Minnesota, started by the Twin Cities Medical Society in 2008.</p>
<p>The programs encourage families to talk about what makes life meaningful and worth preserving. They also urge competent adults to fill out forms that legally guide their future medical care if they can’t make decisions on their own.</p>
<p>Patients with advance directives generally prefer comfort care over medical interventions and use $2,000 less doctor and hospital services in the last six months of life, according to Gundersen Lutheran.</p>
<p>They also give family members peace of mind.</p>
<p>A few days after I watched the film last month, I received an envelope from my parents, who are 83, healthy and living in Minnesota.</p>
<p>Through Honoring Choices Minnesota, they filled out health care directives and sent them to my brother and sister and me.</p>
<p>I already had a general sense of their wishes, but now those are written down in detail. I hope we don’t have to make any decisions for a long time. But if or when we do, now it will be easier.</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
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		<title>10 Tips on Dying With Dignity</title>
		<link>http://www.compassionandchoices.org/2012/12/06/10-tips-on-dying-with-dignity/</link>
		<comments>http://www.compassionandchoices.org/2012/12/06/10-tips-on-dying-with-dignity/#comments</comments>
		<pubDate>Thu, 06 Dec 2012 00:40:26 +0000</pubDate>
		<dc:creator>Sonja</dc:creator>
				<category><![CDATA[Advance Directive]]></category>
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		<guid isPermaLink="false">http://www.compassionandchoices.org/?p=5644</guid>
		<description><![CDATA[by Laurel Lewis IntentBlog December 5, 2012 These tips come from my experience of being with hundreds of people as they have died and with the thousands of family members who have witnessed this event. Consider using these tips for dying well … and for living well! 10. Talk about what you do and don’t<span style="white-space:nowrap;">... <a href="http://www.compassionandchoices.org/2012/12/06/10-tips-on-dying-with-dignity/" class="bn">more</a></span>]]></description>
			<content:encoded><![CDATA[<p>by Laurel Lewis<br />
<em>IntentBlog</em><br />
December 5, 2012</p>
<p>These tips come from my experience of being with hundreds of people as they have died and with the thousands of family members who have witnessed this event. Consider using these tips for dying well … and for living well!</p>
<p><strong>10. Talk about what you do and don’t want.</strong></p>
<p>Tell your family, friends and doctors how you want to be treated and what kind of treatments you want or don’t want! Consider a living will or other advance directives so that your wishes will be known prior to end of life choices. Consider your needs: physical, emotional and spiritual because they all impact your final days.</p>
<p><strong>9. Have a life review. Recall significant and meaningful events .</strong></p>
<p>Share your stories either verbally or written with your loved ones, in a journal or on tape. As you do this forgive yourself and others for everything! Let go of judgments. Judging people and events take up precious energy that could be spent loving instead. Release the judgments and allow yourself to be fully present to what is in your life right now.</p>
<p><strong>8. Express gratitude daily – for something, anything!</strong></p>
<p>This will help move you from the context of small self who is dying to connect with the bigger part of Life that is surrounding us always. Expressing gratitude creates a positive shift in our mental state, which in turn has positive physical benefits.<span id="more-5644"></span></p>
<p><strong>7. Connect with something more than yourself.</strong></p>
<p>Connect with your family, your friends, nature, art, pets, your God, Spirit, your ideals. Allow yourself to belong to something more than yourself so that when you die, you will be connected to those things in which you invested your time and energy.</p>
<p><strong>6. Be authentic and transparent.</strong></p>
<p>Say what you mean and mean what you say. Express yourself courageously holding nothing back. Your vulnerability will be rewarded with intimacy. Allow yourself to feel your feelings – all of them. You are allowed to be just as you are. Give yourself permission to explore this concept and to explore really being YOU! This is the time to do it.</p>
<p><strong>5. Be optimistic and realistic about what is happening.</strong></p>
<p>Expect the best while being prepared for the worst. This can be challenging but from my experience, extremely rewarding. Put your affairs in order. Write your will, choose a mortuary, talk about your funeral, talk about what’s happening in order to bring understanding to your experience and alleviate confusion for your loved ones.</p>
<p><strong>4. Accept what is as it is happening.</strong></p>
<p>No one can really know what you are going through. This is your private journey. All we can do is support and love you. It is true that we are all going to die, but not all of us have the experience of the deathbed. As you find yourself contemplating death and accepting this inevitability look for the places inside that fight against this reality. There is a quote I like that captures this theme, “When we stop opposing reality, action becomes simple, fluid, kind, and fearless.” ~ Byron Katie</p>
<p>As you gracefully yield to your body’s end, you may indeed find peace, joy, and pleasures in the days you have left surrounded by love and loved ones.</p>
<p><strong>3. Say please and thank you.</strong></p>
<p>These words express kindness, respect, and appreciation and will elicit positive responses from everyone who is close to you. The energy behind these words is powerful and respectful. Even if someone has to wipe your butt in your final days you can still maintain a dignified experience simply by the energy of your presence.</p>
<p><strong>2. Look people in the eye.</strong></p>
<p>People generally don’t know how to behave around someone who is nearing the end of life. This is an opportunity to “get real”, to allow yourself to be seen, really seen. Gazing into someone’s eyes without words allows our hearts to connect at a very deep level and can be very satisfying and rewarding.</p>
<p><strong>1. Breathe.</strong></p>
<p>While you have Life moving through you, allow it to move through you. When you feel tight or anxious: breathe. When you feel sad or tired: breathe. When you feel angry or hurt: breathe. Consciously breathe and open yourself up to the present moment. Allow Life to reveal its preciousness to you for as long as you can and with all of the awareness you have. Live until you die.</p>
<p>&nbsp;</p>
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		<title>Struggling: End-of-Life Conversations</title>
		<link>http://www.compassionandchoices.org/2012/11/21/struggling-end-of-life-conversations/</link>
		<comments>http://www.compassionandchoices.org/2012/11/21/struggling-end-of-life-conversations/#comments</comments>
		<pubDate>Wed, 21 Nov 2012 23:29:44 +0000</pubDate>
		<dc:creator>Sonja</dc:creator>
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		<guid isPermaLink="false">http://www.compassionandchoices.org/?p=5605</guid>
		<description><![CDATA[by Patricia Patton Huffington Post November 17, 2012 It is the end of life. My sister lies in her hospital bed, and I am being challenged to set her free. But what I really feel like doing is SCREAMING at the top of my lungs. The doctors have finally stated, &#8220;We can make her comfortable.&#8221; That means<span style="white-space:nowrap;">... <a href="http://www.compassionandchoices.org/2012/11/21/struggling-end-of-life-conversations/" class="bn">more</a></span>]]></description>
			<content:encoded><![CDATA[<p>by Patricia Patton<br />
<em>Huffington Post</em><br />
November 17, 2012</p>
<p>It is the end of life.</p>
<p>My sister lies in her hospital bed, and I am being challenged to set her free. But what I really feel like doing is SCREAMING at the top of my lungs. The doctors have finally stated, &#8220;We can make her comfortable.&#8221; That means the family must now shift gears and face our reality.</p>
<p>I had been managing my sister&#8217;s emotional care from across the country. In truth, her husband had been her primary caregiver and I was his wing wo/man. I had been criss-crossing the country, trying to help her experience some joy by staying close to her and by helping her heal old wounds with her adult children. The downward spiral had begun in earnest at least 18 months before. However, consistent with our black southern tradition, my family had not taken even one of the AARP recommendations for those preparing for death. Why? Because of religious beliefs and my sister&#8217;s children and her husband were in denial. Also they really didn&#8217;t know <em>what</em> to do.</p>
<p>AARP research has found that 46 percent of family caregivers perform medical/nursing tasks for their patients who are suffering with multiple chronic physical conditions. My sister had been suffering from kidney failure and breast cancer among other things. So her husband was indeed a part of this 46 percent statistic. He was also <span style="text-decoration: underline;">one</span> of the <em>three out of four</em> (78 percent) caregivers who managed medication, including administering intravenous fluids and injections. He performed these tasks to avoid institutionalizing her because their financial resources would not have allowed for assisted care or live-in help.</p>
<p>So, as I was saying, there we are in the hospital and clearly we are approaching the end of her life. The sister I know is gone, even though her body is lying in the hospital bed. Technically she is still here, thanks to a ventilator &#8212; but I don&#8217;t think this could be called living.<span id="more-5605"></span></p>
<p>And now it is the family&#8217;s selfishness that insists that the doctors &#8220;do whatever is possible&#8221; to keep her in this realm. One faction believes that whatever happens is God&#8217;s will. There are others who feel my sister is gone and it is time to pull the plug. The confusion exists because we, the family, do know my sister&#8217;s wishes. And between her children and her husband, they cannot agree what should be done. Personally, I don&#8217;t know if it is escapism or what. But I just want to dance my big sister into the next dimension while Sting sings, <em>&#8220;If you love someone, set them free.&#8221;</em></p>
<p>I learned from her husband that she wanted to be cremated. But no one, not E-V-E-R in our Southern Baptist family had <strong>ever</strong> been cremated. It comes as a surprise to me that these are my sister&#8217;s wishes. At the same time I also know she would not have wanted anyone looking down on her in a casket. Now in the tension of struggling with our individual rational minds and our emotional responses, the family is facing challenges with each other trying to figure out how to proceed.</p>
<p><strong>What Should We Know?</strong></p>
<p>The AARP &#8216;s Caregiving Resource Center suggests that everyone answer these questions:</p>
<ul>
<li>Where do I want to die? At home, or in a hospital or medical facility? Surrounded by people who love me, or privately with as little fuss as possible?</li>
</ul>
<ul>
<li>What kind of medical treatment do I want?</li>
</ul>
<ul>
<li>Who do I want to take care of me? Do I have a preference in terms of male or female, or anything else?</li>
</ul>
<ul>
<li>What kind of funeral services do I want? Do I care about an open or closed casket, cremation or donating my body to science?</li>
</ul>
<ul>
<li>Where do I want to be buried? Do I have a burial plot? Do I want to use it or be buried somewhere else?</li>
</ul>
<p><strong>What Should I Do?</strong></p>
<p>The two most important directives that can therefore be put together and given to your love ones once these questions are:</p>
<ul>
<li><strong>A Living Will:</strong> This document specifies their wishes regarding medical treatment, and particularly the refusal of life-prolonging medication when death is imminent.</li>
</ul>
<ul>
<li><strong>A Healthcare Power of Attorney:</strong> This document allows your parents to appoint someone they trust to act on their behalf and make decisions regarding their medical treatment if they are unable to do so.</li>
</ul>
<p>What I know is that my sister would not have wanted her children or husband to fret as they worked through their personal guilt in giving her permission to leave. And the truth is that only she could have prevented this by making her wishes known.</p>
<p>&nbsp;</p>
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		<title>Dignity and End-of-Life Care</title>
		<link>http://www.compassionandchoices.org/2012/11/16/dignity-and-end-of-life-care/</link>
		<comments>http://www.compassionandchoices.org/2012/11/16/dignity-and-end-of-life-care/#comments</comments>
		<pubDate>Fri, 16 Nov 2012 00:42:03 +0000</pubDate>
		<dc:creator>Sonja</dc:creator>
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		<guid isPermaLink="false">http://www.compassionandchoices.org/?p=5571</guid>
		<description><![CDATA[Winston-Salem Chronicle November 15, 2012 Consider this situation: you are driving home in a rain storm; you lose control of your car and hit a tree. You are taken to the hospital and need emergency medical attention. After the surgery, they determine that there is no hope of recovery, and you can only be kept<span style="white-space:nowrap;">... <a href="http://www.compassionandchoices.org/2012/11/16/dignity-and-end-of-life-care/" class="bn">more</a></span>]]></description>
			<content:encoded><![CDATA[<p><em>Winston-Salem Chronicle</em><br />
November 15, 2012</p>
<p>Consider this situation: you are driving home in a rain storm; you lose control of your car and hit a tree. You are taken to the hospital and need emergency medical attention. After the surgery, they determine that there is no hope of recovery, and you can only be kept alive by machines. What happens to you now? Would you choose to be kept alive artificially, or would you prefer to die with dignity? Unless you make your wishes known beforehand, you will not have a say. Your family will decide your fate without knowing what you wanted done.</p>
<p>Unfortunately in our society today, very little planning is done for the certainty of death.  In the absence of documents stating someone’s preference regarding end-of-life issues, the person is vulnerable to the will of the physician, family, friends or other acquaintances. Alarmingly, only 11 percent of African Americans express their wishes regarding end-of-life care, compared to 38 percent of whites.<span id="more-5571"></span></p>
<p>How Can I Ease the Burden on My Family?</p>
<p>Planning is required to protect your loved ones from uncomfortable situations and decision-making.  Each adult should first decide what he or she would want to happen in the event that they are too ill to speak for themselves.   Next, this decision should be clearly communicated to the family and physician. The key is to have the conversation before a crisis occurs. Talk about what you would like to happen in sudden situations such as an automobile accident, a heart attack or a stroke. Become familiar with and state your opinion concerning life-sustaining technology, including cardiopulmonary resuscitation and mechanical ventilation.  Most importantly, understand that verbal communication is not enough in all situations.</p>
<p>What is a Living Will?</p>
<p>A living will is a written legal document that outlines your wishes related to end-of-life care. It allows you to direct healthcare providers regarding what you do and do not want them to do for you. The standard living will discusses your choice to be kept alive by: 1) intravenous fluids and nutrition, 2) a feeding tube, and 3) a mechanical ventilator (breathing machine). It addresses situations in which a person is terminally ill (has no hope for survival) or in a persistent vegetative state (is unable to communicate). If the physician certifies that you meet one of these conditions, then it is reasonable to rely on the living will as a statement of your wishes.  If you are unable to speak for yourself but your situation is not terminal (there is hope for recovery), most living wills do not apply.  This latter situation demonstrates why a living will alone is sometimes not enough to ensure that your wishes are honored; sometimes a healthcare power of attorney is necessary as well.</p>
<p>What is a Healthcare Power of Attorney?</p>
<p>You should discuss your decisions concerning end-of-life care with a person with whom you feel comfortable and trust to make medical decisions on your behalf.  Appoint this person as your Health Care Power of Attorney (HCPOA).  He or she will make healthcare decisions for you (the patient) whenever you are unable to make your own decisions or state your own opinion. While many people feel that having an HCPOA is always an end-of-life decision, consider the case of an automobile accident, which occurs without warning and leaves no time to make your wishes known.  There needs to be one person assigned to speak with the healthcare professional on your behalf and answer questions regarding your care.</p>
<p>An HCPOA only goes into effect when you cannot make your own decisions. It may be revoked by the person who enacted it at any time. Therefore, if situations change (e.g. divorce or death of an assigned person) someone else can be appointed. If there is no assigned HCPOA, there is a common law progression of decision makers who take over.  This starts with the husband or wife, followed by adult children, parents, and then brothers or sisters. Unfortunately, if an individual’s wishes have not been discussed with all the family members, each may have a different decision.  This may result in chaos, anger, frustration and family division.</p>
<p>Remember: Both a living will and an HCPOA agreement must be signed in the presence of two witnesses and notarized. While this can be done at a lawyer’s office, public libraries also have blank forms, and there are many organizations that offer assistance in completing the forms and having them notarized.</p>
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