<?xml version="1.0" encoding="UTF-8"?><rss version="2.0"
	xmlns:content="http://purl.org/rss/1.0/modules/content/"
	xmlns:wfw="http://wellformedweb.org/CommentAPI/"
	xmlns:dc="http://purl.org/dc/elements/1.1/"
	xmlns:atom="http://www.w3.org/2005/Atom"
	xmlns:sy="http://purl.org/rss/1.0/modules/syndication/"
	xmlns:slash="http://purl.org/rss/1.0/modules/slash/"
	>

<channel>
	<title>palliative &#8211; medhum.org</title>
	<atom:link href="https://medhum.org/tag/palliative/feed/" rel="self" type="application/rss+xml" />
	<link>https://medhum.org</link>
	<description>Cultivating empathy &#38; critical thinking in health, culture &#38; the arts</description>
	<lastBuildDate>Sat, 07 Mar 2026 04:15:52 +0000</lastBuildDate>
	<language>en</language>
	<sy:updatePeriod>
	hourly	</sy:updatePeriod>
	<sy:updateFrequency>
	1	</sy:updateFrequency>
	<generator>https://wordpress.org/?v=7.0.2</generator>

<image>
	<url>https://medhum.org/wp-content/uploads/2024/05/cropped-medhum-logo-300-e1715809791117-32x32.png</url>
	<title>palliative &#8211; medhum.org</title>
	<link>https://medhum.org</link>
	<width>32</width>
	<height>32</height>
</image> 
	<item>
		<title>Achieving a Good Death: A Practical Guide to the End of Life by Chris Palmer </title>
		<link>https://medhum.org/review/book-review/rudy_malcom/achieving-a-good-death-a-practical-guide-to-the-end-of-life-by-chris-palmer/</link>
					<comments>https://medhum.org/review/book-review/rudy_malcom/achieving-a-good-death-a-practical-guide-to-the-end-of-life-by-chris-palmer/#respond</comments>
		
		<dc:creator><![CDATA[Rudy Malcom]]></dc:creator>
		<pubDate>Wed, 24 Dec 2025 20:09:52 +0000</pubDate>
				<category><![CDATA[Book Review]]></category>
		<category><![CDATA[Video]]></category>
		<category><![CDATA[advance-directives]]></category>
		<category><![CDATA[aging]]></category>
		<category><![CDATA[autonomy]]></category>
		<category><![CDATA[compassion]]></category>
		<category><![CDATA[death]]></category>
		<category><![CDATA[dignity]]></category>
		<category><![CDATA[dying]]></category>
		<category><![CDATA[ethics]]></category>
		<category><![CDATA[healthcare]]></category>
		<category><![CDATA[hospice]]></category>
		<category><![CDATA[inequity]]></category>
		<category><![CDATA[legacy]]></category>
		<category><![CDATA[legislation]]></category>
		<category><![CDATA[MAID]]></category>
		<category><![CDATA[mortality]]></category>
		<category><![CDATA[New York]]></category>
		<category><![CDATA[palliative]]></category>
		<category><![CDATA[planning]]></category>
		<category><![CDATA[preparation]]></category>
		<guid isPermaLink="false">https://medhum.org/?p=13088</guid>

					<description><![CDATA[A candid, compassionate review explores how planning, autonomy, and honest conversations can transform dying into dignity.]]></description>
										<content:encoded><![CDATA[
<p class="wp-block-paragraph">If the growing popularity of facelifts, hair transplants, and biohacking is any indication, our society is afraid of mortality. Despite being inevitable and universal, death is a difficult and taboo topic. Chris Palmer sets out to change that with his book <em>Achieving a Good Death: A Practical Guide to the End of Life</em>.&nbsp;</p>



<p class="wp-block-paragraph">Modern medicine’s emphasis on extending the human lifespan has, in some cases, transformed dying, once a communal and spiritual event, into a cascade of arduous procedures. Deftly synthesizing the wisdom of many experts with his own insights and experiences, Palmer offers compelling, accessible, and refreshingly honest advice on how to shape our lives and legacies so that we are better prepared to die as we see fit—highlighting agency in aging in the face of ageist norms.&nbsp;</p>



<p class="wp-block-paragraph">Just last week, New York Governor Kathy Hochul announced that the state will join 11 others and Washington, D.C., in legalizing medical aid in dying (MAID), or when physicians prescribe a lethal dose of medications to patients with fewer than six months to live. </p>



<p class="wp-block-paragraph">“New York has long been a beacon of freedom,” <a href="https://www.governor.ny.gov/news/governor-hochul-reaches-agreement-state-legislature-pass-medical-aid-dying-act-new-york" target="_blank" rel="noreferrer noopener">Hochul said</a>, “and now it is time we extend that freedom to terminally ill New Yorkers who want the right to die comfortably and on their own terms.”&nbsp;</p>



<p class="wp-block-paragraph">The governor’s rhetoric emphasizes a collective cognitive dissonance: As physician (and fellow politician) <a href="https://www.smerconish.com/exclusive-content/we-need-to-talk-about-death/" target="_blank" rel="noreferrer noopener">Dan Morhaim observes</a>, “our culture celebrates personal autonomy,” but when it comes to death and dying, “we collectively abdicate” that value.&nbsp;</p>



<p class="wp-block-paragraph">Citing Morhaim and others, Palmer provides valuable context for our relationship with mortality (along with additional information about MAID). During the nineteenth and early twentieth centuries, the average death was relatively quick and happened at home, with little involvement from healthcare providers and medical technology. Today, dying is protracted and tends to take place in hospitals or nursing homes; healthcare providers and medical technology are highly involved; and life can be prolonged with organ transplants, chemotherapy, and more.&nbsp;</p>



<p class="wp-block-paragraph">“There is a significant difference between dying peacefully in your bed at home and dying yoked to tubes and machines in an ICU,” Palmer writes, “receiving futile care that only prolongs the dying process for perhaps a few days while providing a horrendous quality of life.”&nbsp;</p>



<p class="wp-block-paragraph">Drawing on surgeon Atul Gawande’s [1] work, Palmer argues that, at best, physicians are uneducated about aging and dying and what might matter to patients approaching the end of their lives. At worst, they are financially motivated to perform aggressive interventions that may do more harm than good.&nbsp;&nbsp;</p>



<p class="wp-block-paragraph">According to numerous studies, frail patients do poorly in hospitals, and Palmer points out that doctors nearing death tend to eschew the very treatments they give to their older patients, such as surgeries and radiation.&nbsp;</p>



<p class="wp-block-paragraph">“I don’t want my last conscious thought to be of doctors stabbing needles into my veins, my ribs breaking from chest compressions, and a large-bore tube thrust into my throat and lungs,” the end-of-life activist writes. “When a patient is young and robust, such curative measures may make good sense despite their violence, but not for an old, debilitated, frail patient.”&nbsp;</p>



<p class="wp-block-paragraph">But we have choices: “where to die, how much treatment to have, and how to spend the limited time we have left.”&nbsp;</p>



<p class="wp-block-paragraph">“While, in a real sense, no death is ever ‘good,’” Palmer underscores, “planning and preparation can make death less awful and painful.”&nbsp;</p>



<p class="wp-block-paragraph">Legislation to make MAID available to the terminally ill is one step in that direction. However, critics argue that MAID may endanger the elderly and disabled, who might feel pressured to end their lives out of fear of causing hardship to their families. Opponents also contend that such policies reinforce the toxic notion that a life with a disability or chronic illness is not worth living. Also, some individuals may seek MAID due to high treatment costs, but MAID should not substitute for accessible care and support.&nbsp;</p>



<p class="wp-block-paragraph">Racial inequities in healthcare are also relevant; Black people might opt for MAID because they are more likely to receive inadequate pain management due to stereotypes that they are drug-seeking or pain-tolerant.[2] Palmer could have engaged more fully with these valid concerns. Fortunately, the Medical Aid in Dying Act in New York has a <a href="https://www.governor.ny.gov/news/governor-hochul-reaches-agreement-state-legislature-pass-medical-aid-dying-act-new-york" target="_blank" rel="noreferrer noopener">number of guardrails</a> meant to ensure the patient’s decision is informed and voluntary, including a&nbsp;conflict-of-interest prohibition and a mandatory mental health evaluation.&nbsp;</p>



<p class="wp-block-paragraph">Well before we are terminally ill, we need to be having routine conversations about dying with our loved ones and physicians. To that end, Palmer endorses <a href="https://theconversationproject.org/" target="_blank" rel="noreferrer noopener">The Conversation Project</a>. He also suggests creating an advance directive, or a legal document outlining your healthcare wishes, and choosing a healthcare proxy—not necessarily your closest relative—when you’re young or in good health. One way to think about your healthcare wishes is to complete the sentence “I would want to live as long as I could still&#8230;”, as recommended by physician Eleanor Tanno. Another is to consider an “exit strategy,” or an illness for which you would decline treatment.[3]&nbsp;</p>



<p class="wp-block-paragraph">Some other tips from Palmer for a “good” death:&nbsp;</p>



<ul class="wp-block-list">
<li>Write a personal mission statement; letters of gratitude to loved ones; and legacy letters, also known as ethical wills, that capture your essence, beliefs, and stories to pass on to future generations.&nbsp;</li>
</ul>



<ul class="wp-block-list">
<li>Make a folder containing everything your children must handle when you die.&nbsp;</li>
</ul>



<ul class="wp-block-list">
<li>Join a “village,” or “virtual retirement community.”&nbsp;</li>
</ul>



<p class="wp-block-paragraph"></p>



<p class="wp-block-paragraph">The author also illuminates the benefits and limitations of palliative and hospice care, delineates various eco-friendly alternatives to embalming (reader: as of writing this, I’d like to be affordably composted), and presents ideas for making funeral and memorial services more substantive—and even fun.&nbsp;</p>



<figure class="wp-block-image alignright size-full is-resized"><img fetchpriority="high" decoding="async" width="647" height="1000" src="https://medhum.org/wp-content/uploads/2025/12/71hAJHx78tL._AC_UF8941000_QL80_.jpg" alt="" class="wp-image-13092" style="width:280px" srcset="https://medhum.org/wp-content/uploads/2025/12/71hAJHx78tL._AC_UF8941000_QL80_.jpg 647w, https://medhum.org/wp-content/uploads/2025/12/71hAJHx78tL._AC_UF8941000_QL80_-194x300.jpg 194w" sizes="(max-width: 647px) 100vw, 647px" /></figure>



<p class="wp-block-paragraph"><em>Achieving a Good Death</em> is a touch dogmatic, but Palmer demonstrates in the book’s rich appendices that he practices what he preaches. In a letter to his family about his own end-of-life wishes, he shares the pain of witnessing his mother’s final years in a nursing home: “I want to prevent what happened to her from happening to me.”&nbsp;</p>



<p class="wp-block-paragraph">“If my mental function is seriously compromised with little chance for full recovery, please seek opportunities to encourage death’s approach&#8230; Are my kidneys faltering? Let them,” he writes, giving new meaning to author Mel Robbins’ self-help concept.&nbsp;</p>



<p class="wp-block-paragraph">The book’s main flaw—one the author himself acknowledges—is that it is primarily aimed at those with friends and families. Readers without such connections may feel less comforted than grimly recognized by Palmer’s planned memorial service playlist featuring the Beatles’ “Eleanor Rigby.”&nbsp;</p>



<p class="wp-block-paragraph">Ultimately, <em>Achieving a Good Death</em> is a stimulating must-read for mortals that will leave you equipped for a more peaceful, dignified, and meaningful end.&nbsp;</p>



<figure class="wp-block-image size-full"><img decoding="async" width="1" height="1" src="https://medhum.org/wp-content/uploads/2025/12/image-3.png" alt="" class="wp-image-13089"/></figure>



<p class="has-palette-color-5-background-color has-background has-small-font-size wp-block-paragraph"><strong><em>Achieving a Good Death: A Practical Guide to the End of Life</em></strong><br>Chris Palmer<br>Rowman &amp; Littlefield, 2024<br><br>[1] Gawande, Atul. <em>Being Mortal: Medicine and What Matters in the End</em>. Metropolitan Books, 2014.&nbsp;<br>[2] Substance Abuse and Mental Health Services Administration. <em>The Opioid Crisis and the Black/African American Population: An Urgent Issue</em>. Publication No. PEP20-05-02-001, Department of Health and Human Services, Office of Behavioral Health Equity, 17 Mar. 2020, <a href="http://samhsa.gov/sites/default/files/meeting/documents/csap-nac-presentation-03172020.pdf" target="_blank" rel="noreferrer noopener">samhsa.gov/sites/default/files/meeting/documents/csap-nac-presentation-03172020.pdf</a>.&nbsp;&nbsp;<br>[3] Harrington, Samuel. <em>At Peace: Choosing a Good Death After a Long Life</em>. Hatchette, 2018.&nbsp;<br><br>Web image by Medhum.org.</p>



<p class="wp-block-paragraph"></p>



<figure class="wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio"><div class="wp-block-embed__wrapper">
<iframe title="Achieving A Good Death; deep, powerful and not the easiest conversation with Chris Palmer." width="1310" height="737" src="https://www.youtube.com/embed/mHz7IPaL47E?feature=oembed" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen></iframe>
</div></figure>
]]></content:encoded>
					
					<wfw:commentRss>https://medhum.org/review/book-review/rudy_malcom/achieving-a-good-death-a-practical-guide-to-the-end-of-life-by-chris-palmer/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>The Things We Don’t Talk About When We Talk About Dying </title>
		<link>https://medhum.org/article/narrative/dave_hsu/the-things-we-dont-talk-about-when-we-talk-about-dying/</link>
					<comments>https://medhum.org/article/narrative/dave_hsu/the-things-we-dont-talk-about-when-we-talk-about-dying/#respond</comments>
		
		<dc:creator><![CDATA[Dave Hsu]]></dc:creator>
		<pubDate>Tue, 13 May 2025 15:40:39 +0000</pubDate>
				<category><![CDATA[Narrative]]></category>
		<category><![CDATA[A Chinese City Doctor’s Notebook]]></category>
		<category><![CDATA[aging]]></category>
		<category><![CDATA[autonomy]]></category>
		<category><![CDATA[canada]]></category>
		<category><![CDATA[cancer]]></category>
		<category><![CDATA[caregiving]]></category>
		<category><![CDATA[chinese]]></category>
		<category><![CDATA[consent]]></category>
		<category><![CDATA[culture]]></category>
		<category><![CDATA[death]]></category>
		<category><![CDATA[dying]]></category>
		<category><![CDATA[ethics]]></category>
		<category><![CDATA[Family]]></category>
		<category><![CDATA[palliative]]></category>
		<category><![CDATA[tradition]]></category>
		<guid isPermaLink="false">https://medhum.org/?p=10596</guid>

					<description><![CDATA[A poignant reflection on cultural differences in end-of-life care, personal identity, and the complexities of truth, family, and medical ethics.]]></description>
										<content:encoded><![CDATA[
<h4 class="wp-block-heading">A Chinese City Doctor’s Notebook–Chapter Three</h4>



<p class="has-palette-color-5-background-color has-background has-small-font-size wp-block-paragraph">In my four years of Canadian medical school, I can only remember being taught four clinical pearls specific to Chinese patients. The first two were epidemiological facts: Hepatitis B is endemic in China and Chinese people have a higher incidence of nasopharyngeal carcinoma than non-Chinese. The third was an observation, that Chinese babies are often born with a large, purple discolouration on their buttocks that fades with time. These discolourations were pejoratively called Mongolian blue spots.&nbsp;</p>



<p class="wp-block-paragraph">The fourth clinical pearl was the strange one. I don’t remember much about the classroom content of first-year medical school, but this moment sticks with me even now, two decades on. In ethics class, we were learning about the concept of patient autonomy, the concept that patients have the right to make choices about their own health care. At this point, the ethicist mentioned to us that in many Asian cultures, especially Chinese and Japanese, people chose to forego autonomy and informed consent when it came to elderly family members and end of life care. What she meant was that Asian families often withheld information about the nature of their parents’ terminal illnesses from them for fear that by telling them parents the truth, their parents would feel irrevocably sad or upset, and that this might even hasten the progression of their illnesses. Until that day, I had never heard of this issue of withholding information from elderly family members before. As a Chinese Canadian, I had taken it for granted everyone would want to know the truth about their health when the time came.&nbsp;</p>



<p class="wp-block-paragraph">A few months after that talk, I was at home and broached the topic with my father.&nbsp;</p>



<p class="wp-block-paragraph">“Dad, they taught us that Chinese don’t like to tell elderly people that they are dying in order to protect them. Have you ever heard of this?”&nbsp;</p>



<p class="wp-block-paragraph">“Of course. You didn’t know about this?” He raised an eyebrow and gave me a look, as if surprised at how little I understood the world. “For Chinese people, we don’t talk about these things. If you know you are sick and dying, then your sickness will be worse.”&nbsp;</p>



<p class="wp-block-paragraph">My father was a learned man. He was a PhD in economics and had lived in North America for more than half his life. I expected more from him. “So you’re telling me that if it was you, you wouldn’t want to know?”&nbsp;</p>



<p class="wp-block-paragraph">“Of course I wouldn’t want to know.”&nbsp;</p>



<p class="wp-block-paragraph">His answer startled me. I had known that we had some different conceptions rooted in our different backgrounds, but for some reason, this caught me by surprise. I had expected him to share in my discovery of something that I presumed was backwards, old-fashioned Chinese thinking. But now it turned out that he was exactly the person being described in the ethics handbook. How little did I know of the world? How little did I know of my father?&nbsp;</p>



<p class="wp-block-paragraph">I dug out my first-year ethics textbook the other day and found the specific passage in question. On the subject of autonomy and Asian patients, the author Philip C. Hébert explains:&nbsp;</p>



<figure class="wp-block-pullquote has-palette-color-5-background-color has-background"><blockquote><p><em>While some countries in Europe and in Asia place less emphasis on the patient’s autonomy, this may change with time as the notion gains a foothold in their courts and as citizens come to play a more active role in their medical care. For example, in Japan, where medicine has traditionally been very paternalistic, the patient’s right to information is gaining ground. In 1995, the national cancer centre decided that patients must be given a form explaining cancer and the side-effects of various treatments. There is now some evidence that patients in widely disparate countries wish to make decisions about the treatment they receive, especially if seriously ill. (Hébert 26)</em>&nbsp;</p></blockquote></figure>



<p class="wp-block-paragraph">When I read the passage over now, I can’t help but find it jarring. For an ethics textbook, the passage does seem to make the assumption that the western way of autonomy is the only right way. I wonder why I didn’t feel that way when I read the passage the first time so many years ago.&nbsp;</p>



<p class="wp-block-paragraph">This specific issue, that of telling an elderly family member about their diagnosis, became the basis of <em>The Farewell</em>, a 2019 film directed by Lulu Wang starring Awkwafina and Tzi Ma. The movie was loosely based on events from Wang’s own family life, in which an elderly grandmother is unaware that she’s been diagnosed with lung cancer. In the movie, the grandmother’s extended family decides that they want to have one last big family get-together but they can’t tell her about her diagnosis. They plot an elaborate fake wedding for one of the grandchildren and use it as an excuse to get everyone together. The movie is told from the vantage point of Billy Wang (played by Awkwafina,) the Americanized granddaughter who loves her grandmother and doesn’t really understand why they can’t tell her the truth.&nbsp;</p>



<p class="wp-block-paragraph">By the end, the movie settles on making the point that although the Chinese way of not telling the elderly about the diagnosis is different from what Billy is used to in the West, it isn’t necessarily worse, and it might even have its own merits.&nbsp;</p>



<p class="wp-block-paragraph">The movie wraps up with a postscript that Wang’s grandmother in real life is still living happily a good six years following her diagnosis. The movie implies that by not burdening her with the truth, the family has managed to improve the grandmother’s quality of life for at least these last few years, and hints that they might even have possibly affected the outcome of her illness and helped send the cancer into remission by not burdening her with the truth about cancer.&nbsp;</p>



<p class="wp-block-paragraph">In my own medical career working with Chinese immigrant patients, I have witnessed versions of this issue arise on several occasions. Several times, I have been asked by well-meaning children that “should anything serious ever happen to my mother or father, please do not inform them of the situation.”&nbsp;</p>



<p class="wp-block-paragraph">Sometimes, the request is gentler. “If any really important bad news needs to be broken to the parents, please let me know first and then we can discuss what to do about it.”&nbsp;</p>



<p class="wp-block-paragraph">As I’ve come to understand it, the reason for the request is a combination of things. There’s the obvious, overarching cultural basis to it. Confucius may not have ever specifically addressed the issue of whether people should withhold life-threatening medical diagnoses from their parents, but he did repeatedly underscore the value of filial piety and how one’s loyalty to one’s own parents should in some ways exceed their loyalty to themselves. So, in a way, not telling our parents the truth about their own mortality is just a little white lie to ease help ease a loved one through one of life’s inevitable travails. At least they’ll feel better not having to worry.&nbsp;</p>



<p class="wp-block-paragraph">This leads to the second reason, the belief that knowledge of one’s own mortality will almost certainly worsen any medical condition and hasten one’s demise. Given our own modern understanding that stress can make health worse, it does make sense to presume that fear about one’s own demise, very likely the greatest stress of all, could have deleterious health effects on a person who is already ill.&nbsp;</p>



<p class="wp-block-paragraph">Finally, sometimes the reason for requesting us to forego patient autonomy is simple pragmatism. Maybe mom or dad are unable to handle stress even at the best of times and we already know they won’t take the news well. In this case, shielding them from the truth might make a lot of things go more smoothly.&nbsp;</p>



<p class="wp-block-paragraph">In any case, when I’ve been presented with this scenario, as a Westerner, it’s difficult to dial down the urge to sit the patient’s family down and start channeling American police and cowboy movies. I can just imagine myself putting my hand on my holster and informing them that, “Ma’am, this isn’t the way we do things around here.”&nbsp;</p>



<p class="wp-block-paragraph">In my early years in practice, this is pretty much how I approached the problem, by understanding it as a purely cultural difference, and assuming that the ethics underpinning autonomy and informed consent should have universal application to all patients, regardless of cultural background. My understanding was that if you were living in Canada, then you had better accept that you had to do things the Canadian way. In short: when it comes to medical care, this is how we do it here.&nbsp;</p>



<p class="wp-block-paragraph">With that in mind, I’d sit down with the family member and explain to them that while we respected that other cultures could feel differently about this issue, this wasn’t really the way it’s done in the West. Then I’d present a compromise. “How about I ask your parent a hypothetical question along the lines of ‘if something were to happen to you, would you want to know about it?’”&nbsp;</p>



<p class="wp-block-paragraph">I’ve done this on several occasions in my career, and without fail, each time the elderly patient would contemplate the question for a moment before shaking their head and deciding that that no, they were better off not knowing the truth.&nbsp;</p>



<figure class="wp-block-pullquote has-palette-color-5-background-color has-background"><blockquote><p>As I’ve gone further along into my career and watched over my patients for almost two decades, I’ve thought about this question many times, and more questions have been raised..&nbsp;</p></blockquote></figure>



<p class="wp-block-paragraph">What’s the big deal about all this? What happens if Grandmother or Grandfather doesn’t know the truth about their own illness? Is it really such a big problem if their child makes all the major medical decisions for them while they exist in a state of unknowing bliss? Isn’t that not that different than how parents often approach major medical decisions for an infant or a small child?&nbsp;</p>



<p class="wp-block-paragraph">And what about patients who explicitly abdicate responsibility for their own health at the eleventh hour? If the parent specifically says that they don’t want to know about their illness, then what? What are the implications of them ceding responsibility for this portion of their life to their loved ones?&nbsp;</p>



<p class="wp-block-paragraph">On a very basic pragmatic level, the parent not knowing about their own medical illness throws a monkey wrench into the basic efficiency of the health care encounter. In the West, certain aspects of health care depend on the patient being able to make informed choices, or at least depend on them having the knowledge of their illness.&nbsp;</p>



<p class="wp-block-paragraph">Imagine attempting to go for surgery or chemotherapy but not actually knowing that you have cancer. Imagine furthermore, that all the nurses and doctors who talk to you, who know full well that you are dying, cannot slip up even once and tell you the truth about what you are facing because once they spill the beans, there’s no putting anything back into Pandora’s box.&nbsp;</p>



<p class="wp-block-paragraph">Treatment decisions that might normally just be a quick conversation with a patient, now need to be run by an intermediary. Doctor visits that take ten minutes now take twenty minutes as a result.&nbsp;&nbsp;</p>



<p class="wp-block-paragraph">Furthermore, the practical effect of withholding information doesn’t end with health care. It applies even beyond the medical aspects of end-of-life care. Estate planning, inheritances, all the things that give grieving families around the world even more grief, are much more easily dealt with if the person who is dying is able to say what they actually want done. Except they can’t, if nobody actually is allowed to tell them that they are dying.&nbsp;</p>



<p class="wp-block-paragraph">There’s also this aspect from the family member’s standpoint: when a person agrees to make all medical decisions for their parent, they are agreeing to take responsibility for some decisions that are essentially impossible to make, especially when it pertains to end-of-life care. Should we perform heroic, but most likely futile measures on your parent? How hard is it for someone, even if they’ve had a full discussion with their parent, to be willing to make these life and death choices on behalf of their parent?&nbsp;</p>



<p class="wp-block-paragraph">Perhaps I’m giving away my Western upbringing, but I still can’t help but feel that there is something inauthentic about withholding the truth. Imagine living your days in an imagined reality where you believe you aren’t actually very sick, but you are. Without this end-of-life discussion experience, the person who is sick, and very likely their children, are not able to emotionally share life’s final journey together. Since it’s a journey that we all have to take, and it’s well-accepted that a serious illness or death in the family is one of the most difficult and stressful things that anyone has to go through, it only makes sense that if we can talk about it as a collective, surely we could deal with it better together than going through it alone.&nbsp;</p>



<p class="wp-block-paragraph">In the West, we are proud to have come up with these ethical principles that define our medical care. We laud the principles of autonomy and informed consent and look down at cultures that do things a different way. But as I’ve gotten older, I’ve noticed that in fact, Eastern and Western ideas about this aspect of medicine are not as dissimilar as we might presume. Yes, it’s true that in the West, as doctors we make a point to talk to the patient about death. We’re not afraid to tell a patient they have cancer, and we’re not afraid to try to tell them that the end is near. But at the same time, we usually stop right there and don’t say much beyond that.&nbsp;</p>



<p class="wp-block-paragraph">What does it actually mean to be dying? How does that make you feel? Is it scary? Do you have any regrets? Is there anything else you would like to do before you go? How does it make your children feel? Is there anything we can do to help with any of this? These are not conversations doctors typically have, but they seem to be at the heart of facing death honestly and authentically.&nbsp;</p>



<p class="wp-block-paragraph">The fact is we’re mostly not trained as doctors to have these conversations. Quite frankly, I’m not sure that most of us even have these conversations at home with our own families. It’s too easy, most times, when faced with these end-of-life crises, for doctors to leap into problem-solving mode. That is, after all, what we’re best at. End of life care sometimes becomes a series of day-to-day crises to manage. You’re having difficulty getting up? We’ll bring in a wheelchair. Constipated? There are so many pills for that. In pain? Good thing narcotics have been invented. As doctors, we’re trained to reflexively problem-solve. But sometimes, maybe what people need as they face death, is just someone to be present, to listen, and to talk to. Death may be inevitable, but it can still come with catharsis.&nbsp;</p>



<p class="wp-block-paragraph">Fortunately, the culture of Western medicine is changing. Conversations around death have become more normalized. The development of palliative care, a relatively new field of medicine that has appeared in the last several decades, has certainly helped this process. When it comes to death and dying, medicine in both the East and West still has much to learn, but at least we are trying. Maybe we will get where we need to be someday.&nbsp;</p>



<p class="wp-block-paragraph">My father was diagnosed with Alzheimer’s dementia in 2013. Shortly after he was diagnosed, we were faced with the issue of establishing power of attorney and determining what to do in the event of end-of-life care decisions. At the time, his illness wasn’t that severe, and he was a pleasant, if mildly confused, sixty-eight-year-old. He’d even been driving up to a few months prior.&nbsp;</p>



<p class="wp-block-paragraph">So one night, at dinner at my mother’s house with my sister and me present, we took out the power of attorney paperwork and gathered around the dinner table with him. I remembered how he’d told me so many years ago that he wouldn’t want to know if he was suffering from a terminal illness, so I tried to explain to him that we weren’t asking him these questions because anything was imminent, but just as a precaution for the distant, distant future; we wanted to know his wishes in advance. We asked him that in the event he became incapacitated, what would he want us to do? Did he want heroic measures like CPR and being put on a ventilator?&nbsp;</p>



<p class="wp-block-paragraph">I still remember him looking back at us, sheepishly, like a small child. It’s impossible to know just how much he understood in that moment.&nbsp;</p>



<p class="wp-block-paragraph">He smiled and said, “I guess if it’s already that bad, you don’t need to do anything.”&nbsp;</p>



<p class="wp-block-paragraph">Then he got up and shuffled off to the living room.&nbsp;</p>



<p class="wp-block-paragraph">I breathed a sigh of relief. It was obvious that, demented or not, it was a conversation that my father had not wanted to have. And the same went for me.&nbsp;</p>



<p class="wp-block-paragraph">I never talked to him about his diagnosis again.&nbsp;</p>



<p class="has-small-font-size wp-block-paragraph">Web photo by <a href="https://unsplash.com/@sharonmccutcheon">Alexander Grey</a></p>



<h4 class="wp-block-heading"><br>Additional Chapters from A Chinese City Doctor’s Notebook</h4>


<div  class="ultp-post-grid-block wp-block-ultimate-post-post-list-3 ultp-block-74ea32 "><div class="ultp-block-wrapper" ><div class="ultp-loading"><div class="ultp-loading-spinner" style="width:100%;height:100%"><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div><div></div></div></div><div class="ultp-block-items-wrap ultp-block-row ultp-block-column-2 ultp-block-content-middle ultp-layout1"><div class="ultp-block-item ultp-block-media post-id-13105"><div class="ultp-block-content-wrap"><div class="ultp-block-image ultp-block-image-zoomIn"><a href="https://medhum.org/article/narrative/dave_hsu/when-your-body-isnt-yours/" ><img decoding="async"  loading="lazy" alt="When Your Body Isn’t Yours "  src="https://medhum.org/wp-content/uploads/2025/12/ChatGPT-Image-Dec-29-2025-03_55_18-PM-150x150.jpg" /></a></div><div class="ultp-block-content"><h3 class="ultp-block-title "><a href="https://medhum.org/article/narrative/dave_hsu/when-your-body-isnt-yours/" >When Your Body Isn’t Yours </a></h3><div class="ultp-block-meta ultp-block-meta-emptyspace ultp-block-meta-style3"><span class="ultp-block-date ultp-block-meta-element"><svg xmlns="http://www.w3.org/2000/svg" fill="none" viewBox="0 0 24 24">
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M3 5.5a2 2 0 0 1 2-2h14a2 2 0 0 1 2 2v14a2 2 0 0 1-2 2H5a2 2 0 0 1-2-2v-14ZM8 2v3m8-3v3M3 9h18"/>
</svg>
01.12.26</span><span class="ultp-post-view ultp-block-meta-element"><svg xmlns="http://www.w3.org/2000/svg" fill="none" viewBox="0 0 24 24">
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M1 12s4-8 11-8 11 8 11 8-4 8-11 8-11-8-11-8Z"/>
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M12 15a3 3 0 1 0 0-6 3 3 0 0 0 0 6Z"/>
</svg>
689</span></div></div></div></div><div class="ultp-block-item ultp-block-media post-id-11667"><div class="ultp-block-content-wrap"><div class="ultp-block-image ultp-block-image-zoomIn"><a href="https://medhum.org/article/narrative/dave_hsu/from-tigers-to-otaku/" ><img decoding="async"  loading="lazy" alt="From Tigers to Otaku"  src="https://medhum.org/wp-content/uploads/2025/09/BrowserPreview_tmp-4-topaz-denoise-face-150x150.jpg" /></a></div><div class="ultp-block-content"><h3 class="ultp-block-title "><a href="https://medhum.org/article/narrative/dave_hsu/from-tigers-to-otaku/" >From Tigers to Otaku</a></h3><div class="ultp-block-meta ultp-block-meta-emptyspace ultp-block-meta-style3"><span class="ultp-block-date ultp-block-meta-element"><svg xmlns="http://www.w3.org/2000/svg" fill="none" viewBox="0 0 24 24">
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M3 5.5a2 2 0 0 1 2-2h14a2 2 0 0 1 2 2v14a2 2 0 0 1-2 2H5a2 2 0 0 1-2-2v-14ZM8 2v3m8-3v3M3 9h18"/>
</svg>
09.16.25</span><span class="ultp-post-view ultp-block-meta-element"><svg xmlns="http://www.w3.org/2000/svg" fill="none" viewBox="0 0 24 24">
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M1 12s4-8 11-8 11 8 11 8-4 8-11 8-11-8-11-8Z"/>
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M12 15a3 3 0 1 0 0-6 3 3 0 0 0 0 6Z"/>
</svg>
1542</span></div></div></div></div><div class="ultp-block-item ultp-block-media post-id-11248"><div class="ultp-block-content-wrap"><div class="ultp-block-image ultp-block-image-zoomIn"><a href="https://medhum.org/article/narrative/dave_hsu/the-happiest-couple/" ><img decoding="async"  loading="lazy" alt="The Happiest Couple"  src="https://medhum.org/wp-content/uploads/2025/07/BrowserPreview_tmp-11-150x150.jpg" /></a></div><div class="ultp-block-content"><h3 class="ultp-block-title "><a href="https://medhum.org/article/narrative/dave_hsu/the-happiest-couple/" >The Happiest Couple</a></h3><div class="ultp-block-meta ultp-block-meta-emptyspace ultp-block-meta-style3"><span class="ultp-block-date ultp-block-meta-element"><svg xmlns="http://www.w3.org/2000/svg" fill="none" viewBox="0 0 24 24">
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M3 5.5a2 2 0 0 1 2-2h14a2 2 0 0 1 2 2v14a2 2 0 0 1-2 2H5a2 2 0 0 1-2-2v-14ZM8 2v3m8-3v3M3 9h18"/>
</svg>
07.28.25</span><span class="ultp-post-view ultp-block-meta-element"><svg xmlns="http://www.w3.org/2000/svg" fill="none" viewBox="0 0 24 24">
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M1 12s4-8 11-8 11 8 11 8-4 8-11 8-11-8-11-8Z"/>
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M12 15a3 3 0 1 0 0-6 3 3 0 0 0 0 6Z"/>
</svg>
1294</span></div></div></div></div><div class="ultp-block-item ultp-block-media post-id-10596"><div class="ultp-block-content-wrap"><div class="ultp-block-image ultp-block-image-zoomIn"><a href="https://medhum.org/article/narrative/dave_hsu/the-things-we-dont-talk-about-when-we-talk-about-dying/" ><img decoding="async"  loading="lazy" alt="The Things We Don’t Talk About When We Talk About Dying "  src="https://medhum.org/wp-content/uploads/2025/05/alexander-grey-r6_xcsNg0kw-unsplash-e1746725533225-1-150x150.jpg" /></a></div><div class="ultp-block-content"><h3 class="ultp-block-title "><a href="https://medhum.org/article/narrative/dave_hsu/the-things-we-dont-talk-about-when-we-talk-about-dying/" >The Things We Don’t Talk About When We Talk About Dying </a></h3><div class="ultp-block-meta ultp-block-meta-emptyspace ultp-block-meta-style3"><span class="ultp-block-date ultp-block-meta-element"><svg xmlns="http://www.w3.org/2000/svg" fill="none" viewBox="0 0 24 24">
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M3 5.5a2 2 0 0 1 2-2h14a2 2 0 0 1 2 2v14a2 2 0 0 1-2 2H5a2 2 0 0 1-2-2v-14ZM8 2v3m8-3v3M3 9h18"/>
</svg>
05.13.25</span><span class="ultp-post-view ultp-block-meta-element"><svg xmlns="http://www.w3.org/2000/svg" fill="none" viewBox="0 0 24 24">
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M1 12s4-8 11-8 11 8 11 8-4 8-11 8-11-8-11-8Z"/>
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M12 15a3 3 0 1 0 0-6 3 3 0 0 0 0 6Z"/>
</svg>
1874</span></div></div></div></div><div class="ultp-block-item ultp-block-media post-id-9541"><div class="ultp-block-content-wrap"><div class="ultp-block-image ultp-block-image-zoomIn"><a href="https://medhum.org/article/narrative/dave_hsu/one-patient-two-systems/" ><img decoding="async"  loading="lazy" alt="One Patient, Two Systems "  src="https://medhum.org/wp-content/uploads/2025/02/zac-ong-HzD40FXD1hY-unsplash-e1740113067137-1-150x150.jpg" /></a></div><div class="ultp-block-content"><h3 class="ultp-block-title "><a href="https://medhum.org/article/narrative/dave_hsu/one-patient-two-systems/" >One Patient, Two Systems </a></h3><div class="ultp-block-meta ultp-block-meta-emptyspace ultp-block-meta-style3"><span class="ultp-block-date ultp-block-meta-element"><svg xmlns="http://www.w3.org/2000/svg" fill="none" viewBox="0 0 24 24">
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M3 5.5a2 2 0 0 1 2-2h14a2 2 0 0 1 2 2v14a2 2 0 0 1-2 2H5a2 2 0 0 1-2-2v-14ZM8 2v3m8-3v3M3 9h18"/>
</svg>
02.24.25</span><span class="ultp-post-view ultp-block-meta-element"><svg xmlns="http://www.w3.org/2000/svg" fill="none" viewBox="0 0 24 24">
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M1 12s4-8 11-8 11 8 11 8-4 8-11 8-11-8-11-8Z"/>
  <path stroke="currentColor" stroke-linecap="round" stroke-linejoin="round" stroke-width="1.5" d="M12 15a3 3 0 1 0 0-6 3 3 0 0 0 0 6Z"/>
</svg>
2536</span></div></div></div></div></div></div><div class="pagination-block-html" aria-hidden="true" style="display: none;"></div></div>]]></content:encoded>
					
					<wfw:commentRss>https://medhum.org/article/narrative/dave_hsu/the-things-we-dont-talk-about-when-we-talk-about-dying/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>Between Two Worlds, New York to Uganda  </title>
		<link>https://medhum.org/multimedia/video/lucy_bruell/from-new-york-to-uganda/</link>
					<comments>https://medhum.org/multimedia/video/lucy_bruell/from-new-york-to-uganda/#respond</comments>
		
		<dc:creator><![CDATA[Lucy Bruell]]></dc:creator>
		<pubDate>Thu, 15 Aug 2024 18:43:00 +0000</pubDate>
				<category><![CDATA[Journey]]></category>
		<category><![CDATA[Video]]></category>
		<category><![CDATA[Africa]]></category>
		<category><![CDATA[compassion]]></category>
		<category><![CDATA[culture]]></category>
		<category><![CDATA[diagnosis]]></category>
		<category><![CDATA[documentary]]></category>
		<category><![CDATA[healing]]></category>
		<category><![CDATA[healthcare]]></category>
		<category><![CDATA[hospital]]></category>
		<category><![CDATA[language]]></category>
		<category><![CDATA[medicine]]></category>
		<category><![CDATA[narrative]]></category>
		<category><![CDATA[New York]]></category>
		<category><![CDATA[palliative]]></category>
		<category><![CDATA[rural]]></category>
		<category><![CDATA[stigma]]></category>
		<category><![CDATA[translation]]></category>
		<category><![CDATA[travel]]></category>
		<category><![CDATA[Uganda]]></category>
		<category><![CDATA[village]]></category>
		<guid isPermaLink="false">https://medhum.org/?p=7115</guid>

					<description><![CDATA[ A journey of translating care, bridging cultures, and fighting cancer in rural villages with dedication, compassion, and hope.]]></description>
										<content:encoded><![CDATA[
<p class="wp-block-paragraph">It’s mid-June, my last morning in Uganda. The birds are singing, there’s a cool breeze and a smoky sky. I’m sitting on the terrace of the guest house at St Francis Naggalama Hospital. It’s about 30 kilometers from Kampala in a rural part of the country. The hospital has a palliative care team led by nurse Prossy Nafula, and for more than ten years, Drs. Randi Diamond and Howard Eison, a husband and wife team from New York have traveled here to work with them, visiting people in the villages who have life threatening illnesses.&nbsp;&nbsp;</p>



<p class="wp-block-paragraph">This is my third trip to Naggalama.</p>



<figure class="wp-block-image aligncenter size-large"><img loading="lazy" decoding="async" width="1024" height="576" src="https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-120-sec-at-f-1.8-ISO-25-4032-x-3024-240612-1024x576.jpg" alt="" class="wp-image-7119" srcset="https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-120-sec-at-f-1.8-ISO-25-4032-x-3024-240612-1024x576.jpg 1024w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-120-sec-at-f-1.8-ISO-25-4032-x-3024-240612-300x169.jpg 300w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-120-sec-at-f-1.8-ISO-25-4032-x-3024-240612-768x432.jpg 768w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-120-sec-at-f-1.8-ISO-25-4032-x-3024-240612.jpg 1300w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /><figcaption class="wp-element-caption">St. Francis Naggalama Hospital </figcaption></figure>



<p class="wp-block-paragraph">In the summer of 2016, I flew to Entebbe with the doctors to direct a documentary about the US-Ugandan palliative care team. I wanted to explore how the Americans fared in a place lacking the diagnostic tools and tests they depend on in the US, and whether people in the villages, many of whom rely on traditional healers, were receptive to their care.&nbsp;</p>



<figure class="wp-block-image alignright size-medium is-resized"><img loading="lazy" decoding="async" width="225" height="300" src="https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-100-sec-at-f-2.4-ISO-250-3024-x-4032-240606-225x300.jpg" alt="" class="wp-image-7149" style="width:320px" srcset="https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-100-sec-at-f-2.4-ISO-250-3024-x-4032-240606-225x300.jpg 225w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-100-sec-at-f-2.4-ISO-250-3024-x-4032-240606-768x1024.jpg 768w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-100-sec-at-f-2.4-ISO-250-3024-x-4032-240606-1152x1536.jpg 1152w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-100-sec-at-f-2.4-ISO-250-3024-x-4032-240606.jpg 1300w" sizes="auto, (max-width: 225px) 100vw, 225px" /><figcaption class="wp-element-caption">Studio Filming in Multiple Languages</figcaption></figure>



<p class="wp-block-paragraph">Access to healthcare remains a major problem in these areas. The people visited by the team are often in the advanced stages of their disease and need the liquid morphine provided by the government to ease their pain and suffering. Many of the villagers we visited had no idea of their diagnosis and what they could expect as their condition progressed.&nbsp;&nbsp;</p>



<p class="wp-block-paragraph">With the footage from earlier trips, we created a video about cancer and what to expect when diagnosed. The video will be shown on mobile phones by Village Health workers to the people they visit in their districts. The purpose of this trip was to produce translated versions of the program.&nbsp;&nbsp;&nbsp;&nbsp;</p>



<p class="wp-block-paragraph">There are more than 40 languages spoken in Uganda. English, an official language of the country, and Luganda are the most widely spoken, but to reach a broader audience, including the rural population, we to produce other versions. On this trip, we spent a week in Kampala at  <strong><a href="https://www.stoneagepicturez.com/" target="_blank" rel="noreferrer noopener">Stone Age Pictures </a></strong> filming in Kiswahili, French, sign language and Luo, a language mostly spoken in northern Uganda. The plan is to record more versions once these are successfully piloted.</p>



<figure class="wp-block-image aligncenter size-large"><img loading="lazy" decoding="async" width="1024" height="576" src="https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-1-17-sec-at-f-1.6-ISO-1000-4032-x-3024-240605-1024x576.jpg" alt="" class="wp-image-7117" srcset="https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-1-17-sec-at-f-1.6-ISO-1000-4032-x-3024-240605-1024x576.jpg 1024w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-1-17-sec-at-f-1.6-ISO-1000-4032-x-3024-240605-300x169.jpg 300w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-1-17-sec-at-f-1.6-ISO-1000-4032-x-3024-240605-768x432.jpg 768w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-1-17-sec-at-f-1.6-ISO-1000-4032-x-3024-240605.jpg 1300w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /><figcaption class="wp-element-caption">Ali Musoke at Stone Age Pictures</figcaption></figure>



<p class="wp-block-paragraph">Ali Musoke is the head of Stone Age Pictures<strong><a href="https://www.stoneagepicturez.com/" target="_blank" rel="noreferrer noopener"> </a></strong>in Kampala and was&nbsp;the Director of Photography on my documentary film, <strong><em><a href="https://www.oliotyafilm.com/" target="_blank" rel="noreferrer noopener">Oli Otya? Life &amp; Lost in Rural Uganda</a></em></strong>, in 2017. Travel to and from Stone Age from our guest house averaged 20 minutes door to door. We drove alongside women and men carrying all sorts of items balanced on their heads even an open suitcase displaying pieces of jewelry.&nbsp;&nbsp; We passed roadside markets and goats nibbling grass on the side of the road. Traffic was heavier than I remember with government and army vehicles speeding down the middle of the road. Public transportation is either by boda boda motorcycles or buses, really no bigger than vans, that stop along the roads to pick up and drop off passengers. There were so many boda bodas to dodge,&nbsp; at times I felt I was an avatar in a video game, dodging incoming traffic.&nbsp;&nbsp;&nbsp;</p>



<figure class="wp-block-image aligncenter size-large"><img loading="lazy" decoding="async" width="1024" height="576" src="https://medhum.org/wp-content/uploads/2023/08/lucy-untitled-1-1900-sec-at-f-1.8-ISO-20-4032-x-3024-240613-1024x576.jpg" alt="" class="wp-image-7146" srcset="https://medhum.org/wp-content/uploads/2023/08/lucy-untitled-1-1900-sec-at-f-1.8-ISO-20-4032-x-3024-240613-1024x576.jpg 1024w, https://medhum.org/wp-content/uploads/2023/08/lucy-untitled-1-1900-sec-at-f-1.8-ISO-20-4032-x-3024-240613-300x169.jpg 300w, https://medhum.org/wp-content/uploads/2023/08/lucy-untitled-1-1900-sec-at-f-1.8-ISO-20-4032-x-3024-240613-768x432.jpg 768w, https://medhum.org/wp-content/uploads/2023/08/lucy-untitled-1-1900-sec-at-f-1.8-ISO-20-4032-x-3024-240613.jpg 1300w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /><figcaption class="wp-element-caption">Streets in Kampala</figcaption></figure>



<p class="wp-block-paragraph">Ali, his crew and I worked in the studio for six days.&nbsp;Together we directed and edited the new versions. To avoid having to re-edit the video for each language, on-camera actors- two nurses and three professional actors- had to read to time while watching the finely cut scenes in the video. For example, in the section about how cancer is diagnosed, we show techs examining scans then processing a blood sample, The translations of the scripts were handled by a professional translation service in Kampala. Because the translated versions were uniformly longer than the English one, we had the translators on the set to make any last-minute adjustments to the text and to ensure that the reading was accurate. Cultural differences quickly surfaced. For example, biopsy is not a commonly used word, and it was necessary to use a description of the procedure. Similarly, the phrase “palliative care” is not widely known, and not simple to translate. We used the English phrase but showed the team in the field talking to a patient and delivering medicine. Images played a key role throughout the video. For the sign language version, we split the screen evenly between the program and the accompanying signing so that people viewing the video on their mobile phones would be able to see the woman signing.&nbsp;</p>



<figure class="wp-block-image aligncenter size-large"><img loading="lazy" decoding="async" width="1024" height="576" src="https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-750-sec-at-f-1.8-ISO-20-4032-x-3024-240611-1024x576.jpg" alt="" class="wp-image-7118" srcset="https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-750-sec-at-f-1.8-ISO-20-4032-x-3024-240611-1024x576.jpg 1024w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-750-sec-at-f-1.8-ISO-20-4032-x-3024-240611-300x169.jpg 300w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-750-sec-at-f-1.8-ISO-20-4032-x-3024-240611-768x432.jpg 768w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-4-1-750-sec-at-f-1.8-ISO-20-4032-x-3024-240611.jpg 1300w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /><figcaption class="wp-element-caption">Ali flimming on location</figcaption></figure>



<p class="wp-block-paragraph">Once we finished the studio work, we set out for Naggalama to meet up with the team at St. Francis hospital and head out to the villages to visit women who have breast cancer.&nbsp;The next project is a video to help destigmatize a breast cancer diagnosis.</p>



<figure class="wp-block-image aligncenter size-large"><img loading="lazy" decoding="async" width="1024" height="576" src="https://medhum.org/wp-content/uploads/2023/08/lucy-untitled-1-3400-sec-at-f-1.8-ISO-25-4032-x-3024-240611-1024x576.jpg" alt="" class="wp-image-7136" srcset="https://medhum.org/wp-content/uploads/2023/08/lucy-untitled-1-3400-sec-at-f-1.8-ISO-25-4032-x-3024-240611-1024x576.jpg 1024w, https://medhum.org/wp-content/uploads/2023/08/lucy-untitled-1-3400-sec-at-f-1.8-ISO-25-4032-x-3024-240611-300x169.jpg 300w, https://medhum.org/wp-content/uploads/2023/08/lucy-untitled-1-3400-sec-at-f-1.8-ISO-25-4032-x-3024-240611-768x432.jpg 768w, https://medhum.org/wp-content/uploads/2023/08/lucy-untitled-1-3400-sec-at-f-1.8-ISO-25-4032-x-3024-240611.jpg 1300w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /><figcaption class="wp-element-caption">Visiting Village Houses in Kampala</figcaption></figure>



<p class="wp-block-paragraph">As I drove with my crew along the red dirt, rough, and deeply rutted roads to the women’s homes, I couldn’t imagine how women in this area could cope with breast cancer, that is if they were able to be evaluated once they suspected they had an abnormality. Village Health Workers play a key role in connecting women to health centers.&nbsp;But evaluation and treatment is costly and require many trips to the Uganda Cancer Center in Kampala, a trip that can take two hours or more.&nbsp;&nbsp;&nbsp;</p>



<p class="wp-block-paragraph">In this area, many people rely on traditional healers. Szozzi, our soundperson, grew up in one of the villages we drove through, and we stopped to say a quick hello to his family. He told me that the healers have a placebo effect, using talk to soothe their patients even when the herbs they offer have little effect on their physical illness. Sometimes, Szozzi said, people lack the language to express how they feel at vulnerable points in their lives. How a question is asked can make all the difference. And sometimes, they believe that by giving voice to what they feel can make the illness worse.</p>



<figure class="wp-block-image aligncenter size-large"><img loading="lazy" decoding="async" width="1024" height="576" src="https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-2-1-1150-sec-at-f-1.8-ISO-20-4032-x-3024-240614-1024x576.jpg" alt="" class="wp-image-7120" srcset="https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-2-1-1150-sec-at-f-1.8-ISO-20-4032-x-3024-240614-1024x576.jpg 1024w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-2-1-1150-sec-at-f-1.8-ISO-20-4032-x-3024-240614-300x169.jpg 300w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-2-1-1150-sec-at-f-1.8-ISO-20-4032-x-3024-240614-768x432.jpg 768w, https://medhum.org/wp-content/uploads/2024/08/lucy-untitled-2-1-1150-sec-at-f-1.8-ISO-20-4032-x-3024-240614.jpg 1300w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /><figcaption class="wp-element-caption">New buildings at St. Francis Hospital </figcaption></figure>



<p class="wp-block-paragraph">On this morning in Naggalama, we pack our bags and prepare for the trip in the hospital van to the Entebbe airport. The doctors and I take a final walk around the hospital grounds. Much is unchanged since my last visit. The hospital now offers CAT scans, and there is a new building with private rooms.&nbsp; We drop in on the maternity ward to say goodbye to Immy, a nurse and the spiritual leader of the palliative care team, who is caring for her new granddaughter born at the hospital the day we arrived.&nbsp;&nbsp;</p>



<p class="wp-block-paragraph">I leave with mixed feelings, overwhelmed by the needs of the population and grateful for the dedication of the health care workers. I will miss you, Naggalama.</p>



<p class="wp-block-paragraph">For readers interested in the art of translation, I recommend <em>Is That a Fish in Your Ear, Translation and the Meaning of Everything </em>by David Bellos&nbsp;</p>



<figure class="wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio"><div class="wp-block-embed__wrapper">
<iframe loading="lazy" title="Is That a Fish in Your Ear?: Translation and the Meaning of Everything by David Bellos" width="1310" height="737" src="https://www.youtube.com/embed/3cj1s3zSPoo?feature=oembed" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen></iframe>
</div></figure>
]]></content:encoded>
					
					<wfw:commentRss>https://medhum.org/multimedia/video/lucy_bruell/from-new-york-to-uganda/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
	</channel>
</rss>
