tag:blogger.com,1999:blog-61730953753856804902024-03-13T04:47:57.028-07:00End of Life - thoughts from an MDStories about end of life situations I encountered during a 32 year practice in Pulmonary/Critical Care Medicine. I try to point out the ethical issues, stresses, successes and failures. There are literature citations but this is a personal, hopefully educational exercise. Please comment!Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.comBlogger160125tag:blogger.com,1999:blog-6173095375385680490.post-47925428356147119002021-07-09T15:01:00.006-07:002022-02-19T20:20:24.102-08:00Ask The Doctor - Episode 8 - stories with unusual endings. <p></p><div class="separator" style="clear: both; text-align: left;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/4GWlST0kbpI" width="320" youtube-src-id="4GWlST0kbpI"></iframe></div><div class="separator" style="clear: both; text-align: left;">Michael Hebb interviews me in the last (8th) of a series about end of life from RoundGlass. In this one I tell a few stories that have unexpected endings. These are a bit more upbeat than prior episodes. But, even so, shouldn't we consider our own mortality at least daily?</div><br /> <p></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-27659676635918119112021-07-08T13:20:00.000-07:002021-07-08T13:20:37.750-07:00Ask The Doctor - Episode #7 - Discussing brain death and organ transplantation<p> </p><div class="separator" style="clear: both; text-align: left;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/8U-gL17kEh4" width="320" youtube-src-id="8U-gL17kEh4"></iframe></div><div class="separator" style="clear: both; text-align: left;">Michael speaks with Jim about brain death and organ transplantation. Jim tells a story about a patient who suffered a heart attack, was legally dead by brain death criteria, and difficulty a family had in deciding whether or not to donate his organs. Is death stopping of the heart, or brain? The clinical and legal nuances are discussed</div><br /><p></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-65963169890179556062021-07-07T17:14:00.000-07:002021-07-07T17:14:05.787-07:00Ask The Doctor - Episode #6 The Controversies surrounding Medical Aid in Dying (MAID)<p> </p><div class="separator" style="clear: both; text-align: left;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/xZq6n69qIvM" width="320" youtube-src-id="xZq6n69qIvM"></iframe></div><br /><p></p><p>About 25% of the population in the United States lives in areas where MAID is legal. Some call it death with dignity, some call it assisted suicide. What is really happening is discussed.</p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-79221443429771974242021-06-22T12:26:00.004-07:002021-07-04T17:05:21.266-07:00Ask The Doctor - Episode #5 discussing choices and medical ethics at the end of life<p></p><div class="separator" style="clear: both; text-align: left;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/O2qo8Ho3z3Q" width="320" youtube-src-id="O2qo8Ho3z3Q"></iframe></div><div class="separator" style="clear: both; text-align: left;">Ask The Doctor episode #5 discussing the role of medical ethics in the choices we are confronted with at life's end. For example: Do No Harm, Autonomy, Beneficence -- how these principles come into play and can conflict with one another.</div> <p></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-36232808526735518782021-06-14T22:42:00.000-07:002021-06-14T22:42:10.233-07:00Ask The Doctor - Episode #4 <p></p><div class="separator" style="clear: both; text-align: left;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/E5Mz1jyx11o" width="320" youtube-src-id="E5Mz1jyx11o"></iframe></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Discussion about nutrition and feeding tubes. Questions about discontinuing feeding, benefits of feeding tubes and the role of hospice and palliative care at life's end.</div><br /> <p></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-91223250971720765222021-06-14T22:11:00.002-07:002021-06-14T22:11:43.874-07:00Ask The Doctor - Episode #3<div class="separator" style="clear: both; text-align: left;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/NXRX3-7zrTg" width="320" youtube-src-id="NXRX3-7zrTg"></iframe></div><br /><p>Discussing the Health Care Proxy with Michael Hebb. How to choose the person to speak for you when you can no longer speak for yourself.</p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-60811515872773423182021-06-05T13:36:00.001-07:002021-06-05T13:36:24.598-07:00Ask The Doctor - Episode #2<div class="separator" style="clear: both; text-align: left;">In this session, Michael Hebb and I discuss CPR outcomes and how advance directives can be found.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="355" src="https://www.youtube.com/embed/X6zFDKFwg9A" width="427" youtube-src-id="X6zFDKFwg9A"></iframe></div><br /><p><br /></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-49306161622991761372021-06-02T13:00:00.000-07:002021-06-02T13:00:08.458-07:00Ask The Doctor - Episode 1<div class="separator" style="clear: both; text-align: center;"><p><br /></p></div><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><div class="separator" style="clear: both; text-align: center;"><p style="text-align: left;">Here is the first of a series of interviews with Michael Hebb from the RoundGlass End of Life Collective. Future live webinars can be reached on Tuesdays 11 AM PDT via this link - <a href="https://roundglass.zoom.us/j/95233087772">https://roundglass.zoom.us/j/95233087772</a>. The hope is for a dialogue that will encourage us to have the important conversations about what matters most to us. Then choose a health care agent to speak for us when we are no longer able to. The key is to understand our options and to make them known.</p></div></blockquote><div class="separator" style="clear: both; text-align: center;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="383" src="https://www.youtube.com/embed/SWkGxjbi3Xc" width="460" youtube-src-id="SWkGxjbi3Xc"></iframe></div></blockquote></div><br /><p><br /></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-39244201323811499512021-05-27T12:08:00.002-07:002021-05-27T12:12:34.857-07:00It shouldn't have to be this way<p><i>Note: I received the following comments from a friend. She is a scientist and lawyer, but found that the handling of her husband's death could have been better managed, and certainly more personal. Should the primary care physician be able to play a role in the hospital team? In some situations, I think it should happen--but often it doesn't.</i></p><p>I enjoyed “Ask The Doctor” and did not have any trouble
signing on. (This program airs weekly at 11 AM PDT at this link <a href="https://roundglass.zoom.us/j/95233087772" style="font-family: Calibri, sans-serif; font-size: 11pt;">https://roundglass.zoom.us/j/95233087772</a>),</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">Since I finished reading your book <i>Facing Death</i>, I have been
thinking about a deep regret I had when William passed away: I did not
arrange hospice-care in time to have him die at home with less suffering and
with me at his side holding his hand as I always imagined before. Yes, he
had advanced directives and wished a dignified end of life. But whenever
I mentioned hospice-care, he would not respond--I could not insist, knowing how
much he wanted to live and how hard for him to give up. We were in the
hospital for over a week, I stayed every night in the room with him, only went
home for a couple of hours during lunch time. In the morning on the day
he passed away, His four kids let me know that all of them will fly here the next day to visit him. So I arranged for our son to attend to
him while I went home to set up the bedrooms for the group. Sadly when I
returned to the hospital, William already left. I never cried so much in my
life. One of the young palliative-care physician also cried as Wim was her
first patient died on her.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal"><u5:p> </u5:p>The hospital had a palliative team of 3 young physicians who
seemed to came and go on their own schedule without involving me writing orders while I
was away. I wished his own favorite doctor could have come to the
hospital to advise us, or perhaps like you did with your patients, to have a
meeting during which he might have accept the professional recommendation of
hospice-care at home.</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal"><u5:p> </u5:p>Is it possible to arrange an end-of-life consultation with
one’s own physician while dying in a hospital even though the physician is not
affiliated with that hospital? And if so, how to arrange it ahead of time?</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal"><span style="font-size: 11pt;"><span style="font-family: inherit;">Otherwise I am adjusting fine with the help of
my family and friends. </span></span></p><p class="MsoNormal"><span><i><span style="font-family: inherit;"><span style="font-size: 11pt;">Note: How can we make dying more personal. Lots of technologies are springing up to make our wishes known, but each death is a personal nuanced event--something we can't solve with another app, video or directive. Why is the family doctor not part of the support team? We seem to disappear into the hands of physicians who don't really know us when we're admitted to the hospital. There are the rotating hospitalists, specialists and palliative care team personnel who are strangers to us. Making this work can be done, but it needs to be a coordinated dedicated team that can get to know us one on one and bond with the caregivers and also </span></span><span style="font-size: 14.6667px;">relieve their suffering. But somehow, if we have a good relationship with a primary care physician, that person needs to be part of the team. We want to be known and valued at the end.</span></i></span></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-39120052922222614192021-05-06T15:44:00.005-07:002021-05-07T11:47:00.103-07:00Ask the Doctor - about your options for care near life's end<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-qnfSZs91NRE/YJRuVSFOm7I/AAAAAAAAnFI/gB-Rxam9XmARxPgigo0U1v-9pf_lKvPQACLcBGAsYHQ/s1250/Ask%2Bthe%2Bdoctor%2B2.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="703" data-original-width="1250" height="360" src="https://1.bp.blogspot.com/-qnfSZs91NRE/YJRuVSFOm7I/AAAAAAAAnFI/gB-Rxam9XmARxPgigo0U1v-9pf_lKvPQACLcBGAsYHQ/w640-h360/Ask%2Bthe%2Bdoctor%2B2.png" width="640" /></a></div><br />Please join me for the kick-off of this interactive program to have a conversation about the care we might want as we near the end of our lives. Click on the link below for more information.<p></p><p><a href="https://collective.round.glass/End-of-Life/events/ask-the-doctor" target="_blank">https://collective.round.glass/End-of-Life/events/ask-the-doctor</a><br /><br /></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-90874328089699612932021-04-08T13:41:00.001-07:002021-04-08T13:44:46.983-07:00Facing Death: Finding Dignity, Hope and Healing at the End<p><i></i></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><i><a href="https://lh3.googleusercontent.com/-TNyCiBOaoZM/YG9rJzacZrI/AAAAAAAAmmI/wTGjlbgMn4AtajmgNOTp6WGv64RZxjXfACLcBGAsYHQ/image.png" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="703" data-original-width="917" height="324" src="https://lh3.googleusercontent.com/-TNyCiBOaoZM/YG9rJzacZrI/AAAAAAAAmmI/wTGjlbgMn4AtajmgNOTp6WGv64RZxjXfACLcBGAsYHQ/w423-h324/image.png" width="423" /></a></i></div><i><br /><br /></i></div><i><br /><br /></i><p></p><p><i>Note: The following is taken from my recently released book now available at bookstores and on Amazon. From time to time, I'll be posting stories from Facing Death. I hope you find them of use in thinking about your own mortality.</i></p><p><b>Introduction</b></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">For thirty-eight years I cared for very sick, terminally ill
patients. Their stories—their deaths and suffering—have become part of me. I
have collected and treasured the many kind notes that patients and families
have sent me, at times crediting me with powers I do not deserve. As I
ministered to patients, their loved ones and caregivers, I was part doctor,
part teacher, and part spiritual advisor. In a care conference in the ICU, I
would often tell a story to help a family understand the crisis their loved one
was enduring. I tend to think in stories and found that, through them, families
could more easily grasp whatever lesson I was trying to impart. They, like most
of us, had not talked much about death and were unprepared for it. But when
death lands on our doorstep, do we lock the door or welcome it in? Dying is
different for each of us as we enter the unknowable on our own unique path.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Sometimes we negotiate. Larry surprised me during a visit to my
pulmonary clinic. “Doc, I want to take you out to lunch. There’s something I
want to discuss with you.” <br />
<br />
I was a little nervous about the invitation. Larry was a favorite patient of
mine, coming across as a bit crusty but a straight shooter. I’d grown to know
him well and we often chatted about his former career in sales. I was a bit
concerned that he might try to sell me something—and in a way, he did. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">We arranged to meet at a restaurant near the hospital, and after
some pleasantries, Larry let me know that he wanted to talk about dying.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">“Look, I’ve lived a long time and what I’m doing now isn’t really
living,” he said. “These flare-ups are torture. I feel like a fish out of water
and I don’t want to die that way. My biggest fear is suffocating to death. Doc,
I want you to help me at the end.”<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Larry was suffering from severe COPD, and his condition was
getting worse. He had a piercing gaze that twinkled when he cracked one of his
frequent jokes, and he always appeared well groomed. But he breathed noisily
and had a dusky color, even with the oxygen flowing through his nasal prongs.
Larry was not joking now. He’d just been discharged from the hospital after
another crisis, with severe wheezing, gasping and coughing due to infection.
His waterfront home, where he lived alone at age seventy-seven, had become a
prison to him. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">“Doc, I can’t handle the stairs, go crabbing, or even lean over to
dig clams. This is the pits.” <br />
<br />
“How about hiring live-in help or moving to Seattle to be closer to your family
and medical care?”<br />
<br />
“No way,” Larry said. “I don’t want to move and bother my sons or have some
stranger in my home!”<br />
<br />
Larry’s COPD was near end stage. He had the classic findings of distended neck
veins and a barrel-shaped chest. His lungs were over-expanded, and his
diaphragms were moving poorly. There was a trace of swelling in his legs. His
blood showed elevated carbon dioxide, and he couldn’t breathe well enough
either to maintain oxygen or expel CO2. Chronic respiratory failure due to
longstanding tobacco use was his diagnosis. He had finally kicked the habit
five years earlier, which helped some, but not enough. Looking at him, I could
see the side effects of prescribed steroids — the “moon face,” bruising of the arms,
muscle wasting and weakness—all scourges of chronic use of prednisone.<br />
<br />
We talked about ventilators to support his breathing and other kinds of ICU
care. “No,” he said. Larry was clear; he wanted to be in control. “Look Doc,
all I want you to do is promise me that you’ll help me at the end.”<br />
<br />
I continued to listen as he explained his feelings and fears. He didn’t appear
significantly depressed, but I needed to check. “Larry, do you feel sad or hopeless?”
<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">He replied, “No, just mad as hell that I can’t get better.” <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I felt that Larry had very natural “situational depression” from
his illness and I suggested a low dose antidepressant, but he refused—perhaps
because of the medication’s unpleasant side effects, perhaps because he did not
think he was particularly despondent.<br />
<br />
So we discussed options for what would now be called aggressive palliative
care. “Larry, look I’m not Dr. Kevorkian, but there are options. Other than the
medications and oxygen you are using to help you breathe, the best drug at the
end is morphine. This drug takes away the suffocating feeling, treats any pain,
sedates you, and produces euphoria.”<br />
<br />
“Well, Doc, that’s what I want.” <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">“Ok, but there’s a catch. Morphine would likely speed up your
death by several hours -- or even days. If your aim is to relieve suffering,
drugs like morphine will work. But they can hasten death.” <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Larry was resolute. “Look, I just want to die comfortably,” he
said. “I know I’m dying so what’s a few less hours or days?” <br />
<br />
Later, when recounting our discussion to a few of my colleagues, I got a mixed
response. One said, “There are situations you just can’t jump into. This is too
close to assisted suicide.” <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">But another felt patients should have the right to ask for relief
from suffering. “After all, since you can’t cure him you are at least obligated
to relieve his intolerable symptoms.” <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">A religious scholar friend had a broad view. “Your patient is
suffering, and you have tools to help him. I don’t think it’s wise to abandon
him in his time of need. He’ll be transitioning from this life to the next soon
enough. Why extend his needless suffering?”<br />
<br />
I tentatively agreed to comply with Larry’s wishes whenever his next inevitable
flare-up occurred. But I insisted that he try to get buy-in from his two sons,
one an attorney and the other a veterinarian. A week later I conferred with
Larry and his sons who agreed with their dad’s plan. And then we waited.<br />
<br />
Seattle gets dark very early during the Christmas season, and this is when my
pulmonary practice always seemed busiest. Pneumonias were at a peak. New lung
cancers were constantly showing up. The sad stories were relentless. Every day,
my anger at tobacco companies flared hotter. But my spirits were buoyed by a
significant skirmish we’d recently won. It was 1983, and smoking finally had
been banned at my hospital. Prior to that, doctors puffed on cigarettes while
making their rounds, and incredible as it sounds today, families smoked in
patient rooms. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">At dinner two days before Christmas, I got a phone call at home from
the ER doctor. Larry had been admitted, and they were preparing to put him in
the ICU. I said, “I’m not sure he wants to go there. Please hold him in the ER,
and I’ll come see him.”<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">At his bedside shortly thereafter, I could see that Larry looked
awful. “Remember what you promised,” he rasped, his piercing eyes intent as
ever.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I reviewed our plan aloud, and Larry nodded. Normally he would
have gone to intensive care, but we would bypass that and admit him directly to
a medical unit with a do-not-resuscitate (DNR) order.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I pulled the nurses aside and explained the situation.
Fortunately, they were senior caregivers, models of caring and competence. They
had seen too many cases of CPR used on terminal patients—a violent and jarring
experience for all—and they were relieved to be free of that obligation.
“Doctor, I’m glad you don’t view death as a failure in this situation,” one
said. God bless nurses. They were looking after me! <br />
<br />
The morphine drip was started with small supplements as needed. Larry’s sons were
there. Larry himself seemed peaceful, and on my drive home I said a silent
prayer. I slept well that night. Larry passed from this world at 3:14 AM. <br />
<br />
I offer this story as a way into discussing the ethics of offering
palliative treatments that likely hasten death. Key to this question is intent.<a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_edn1" name="_ednref1" style="mso-endnote-id: edn1;" title=""><sup><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><sup><span face=""Calibri","sans-serif"" style="font-size: 11pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[i]</span></sup><!--[endif]--></span></sup></a>
In 1983, when I was caring for Larry, there were no clear guidelines so I had
to rely on my own training, intuition, and personal comfort zone. And though
various groups have published guidelines in recent years,<a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_edn2" name="_ednref2" style="mso-endnote-id: edn2;" title=""><sup><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><sup><span face=""Calibri","sans-serif"" style="font-size: 11pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[ii]</span></sup><!--[endif]--></span></sup></a>
they are still not completely clear. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">What we gave Larry is now called “palliative sedation,” a term
aimed at emphasizing the physician’s intent to ease suffering, rather than
intentionally cause a patient's death. This kind of sedation differs from assisted
suicide precisely because of that one word, <i style="mso-bidi-font-style: normal;">intent</i>.
This is called the double effect. The intent is to relieve pain even if a
secondary effect is to hasten death. Some people deride this distinction as
splitting hairs. But in 1997, the U.S. Supreme Court gave strong support for
this principle in its deliberations about the constitutionality of medical aid
in dying.<a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_edn3" name="_ednref3" style="mso-endnote-id: edn3;" title=""><sup><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><sup><span face=""Calibri","sans-serif"" style="font-size: 11pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[iii]</span></sup><!--[endif]--></span></sup></a>
The thinking in bioethics continues to evolve on this topic.<a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_edn4" name="_ednref4" style="mso-endnote-id: edn4;" title=""><sup><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><sup><span face=""Calibri","sans-serif"" style="font-size: 11pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[iv]</span></sup><!--[endif]--></span></sup></a><br />
<br />
I was deeply touched by the letter of thanks from Larry’s two sons that came a
few weeks after his death. “Dad would love to shake your hand if he could,”
they wrote. “He died the way he wanted to. Thanks and God bless.”<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Larry’s story is one of many that I share in this book. His dying
went well, but all too often our wishes around end-of-life arrangements aren’t
clear. Worse, sometimes they are disregarded. What if I had not been available?
Would my colleagues have done the same? What if Larry’s sons had not agreed?
What if Larry himself had not so bravely and directly helped to guide his own
dying? <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">We only die once—hopefully. Modern medical technology can prolong
death, maybe even reverse its tide temporarily. But when we’re talking about a
person’s final breath, there is only one. Generally, dying isn’t something we
can practice, and it’s not something we discuss much. Most people actively try
to avoid any thought of it. But dying will happen. As noted by humorists at <i style="mso-bidi-font-style: normal;">The Onion,</i><a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_edn5" name="_ednref5" style="mso-endnote-id: edn5;" title=""><sup><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><sup><span face=""Calibri","sans-serif"" style="font-size: 11pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[v]</span></sup><!--[endif]--></span></sup></a> the
world death rate is holding steady at 100%. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Today, we mostly understand death as something happening to others
while we deal with the more immediate cares of our lives. But in eras past,
death was a common companion, always lurking around the corner. It has touched
the hearts of many writers: Kipling spoke to the horrors of war in <i style="mso-bidi-font-style: normal;">A Death Bed</i>; Walt Whitman expressed his
grief over the death of President Lincoln in <i style="mso-bidi-font-style: normal;">O Captain! My Captain!</i>; and John Donne felt that “We wake eternally
and death shall be no more” in <i style="mso-bidi-font-style: normal;">Death, Be
Not Proud.</i> Indeed, disease and death often are central features in
literature, opera, art, and religious thought. In the not too distant past,
tuberculosis, a common cause of death, inspired great novels and operas—Thomas
Mann’s <i style="mso-bidi-font-style: normal;">The</i> <i style="mso-bidi-font-style: normal;">Magic Mountain</i> and Puccini’s <i style="mso-bidi-font-style: normal;">La
Boehme, </i>for<i style="mso-bidi-font-style: normal;"> </i>example. Unfortunately,
TB continues to take more than one million lives annually in developing
nations.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Until the COVID-19 pandemic, heart disease and cancer were the
leading causes of death in developed countries. But in early 2020, the world
was suddenly turned upside down. No one, of any age, was immune to a new strain
of coronavirus that originated in China. It engendered a worldwide panic
unknown since the influenza epidemic of 1918, and quickly became a leading
cause of death in America. The COVID-19 pandemic has forced many to confront death
and its painful losses more suddenly than they had anticipated, particularly among
Black and Latinx communities. However, most of us won’t die from the ravages of
COVID-19. We are much more likely to die of a chronic illness in our old age.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Aging itself is loss. We experience it as a prelude to death. Our
muscles weaken along with our bones, vision and hearing. We become forgetful.
We lose balance, and we worry. We see friends pass away, attend memorials, and
begin to wonder about our own. Medical appointments fill our schedules. Aging
is supposed to bring wisdom. But in the age of social media—where attention
spans are shorter and the pace of life exponentially faster—it feels more
difficult than ever to cope with death creeping closer to our front door.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Shakespeare wrote eloquently about aging and loss in his 73rd
sonnet.<o:p></o:p></span></p>
<p class="MsoNormal"><i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">That time
of year thou mayst in me behold<br />
When yellow leaves, or none, or few, do hang<br />
Upon those boughs which shake against the cold,<br />
Bare ruin’d choirs, where late the sweet birds sang.<br />
In me thou seest the twilight of such day<br />
As after sunset fadeth in the west,<br />
Which by and by black night doth take away,<br />
Death’s second self, that seals up all in rest.<br />
In me thou see’st the glowing of such fire<br />
That on the ashes of his youth doth lie,<br />
As the death-bed whereon it must expire<br />
Consumed with that which it was nourish’d by.<br />
This thou perceivest, which makes thy love more strong,<br />
To love that well which thou must leave ere long.<o:p></o:p></span></i></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">In grade school, as a class assignment, I chose this sonnet to
memorize, but didn’t understand the metaphors until much later. <i style="mso-bidi-font-style: normal;">“To love that well which thou must leave ere
long.”</i> This is the basis of pre-grief that affects us often as we face
aspects of our aging, and often failing bodies.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Must approaching old age invariably be depressing? Not at all.
Recent studies of aging and loss offer hope for a better quality of life, even
as we age. Eric Larson’s book, <i style="mso-bidi-font-style: normal;">Enlightened
Aging: Building Resilience for a Long, Active Life, </i>offers ways to enhance
wellbeing as we age. Among them: proactively managing our health; focusing on
relationships and ways to be useful; and building up our personal reservoirs of
mental, physical, and social health. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">But can we expand beyond Larson’s research on enlightened aging?
What more can we say about death itself? Sherwin B. Nuland’s <i style="mso-bidi-font-style: normal;">How We Die: Reflections on Life’s Final
Chapter</i> addresses dying from his vantage point as a surgeon and historian.
Death may be dignified, he writes, but it often involves some degree of
physical and emotional suffering. “The art of dying is the art of living,” he says.
“The honesty and grace of the years of life that are ending is the real measure
of how we die.”<a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_edn6" name="_ednref6" style="mso-endnote-id: edn6;" title=""><sup><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><sup><span face=""Calibri","sans-serif"" style="font-size: 11pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[vi]</span></sup><!--[endif]--></span></sup></a><o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">In this book I present my own stories, lessons learned from
patients like Larry and many others who taught me about dying. My medical
career began in an era when little could be done for two of our greatest
killers—heart disease and cancer. There were no ventilators. I often saw
patients die without the benefit of hospice care. ICUs and CCUs had not yet
evolved. But with amazing rapidity, medical science has brought us life-saving
advances such as hemodialysis and organ transplants. This progress is both
marvelous and problematic, as technology continually outpaces our ability to
thoughtfully and ethically bring it to the bedside. When should life-prolonging
advances be used? How do we decide to whom to allocate these tools when
resources are scarce or prohibitively expensive? <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">My stories are about hopes and fears common to us all. They are
about the ethical dilemmas I’ve encountered and moments that have humbled me.
They address advance care planning, medical aid-in-dying, conflicts, medical
mistakes, modern hospice, and palliative care. They can be read in the order
presented or topically, as relevant to each person’s immediate questions and
concerns. In the last section, I share my thoughts about resilience and leaving
a legacy to our loved ones. <o:p></o:p></span></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">As I wrote about these patients and my experiences with them,
memories surged to the surface of my thoughts, often bringing up deeply rooted
feelings of sadness and joy, even fear. Did I do the right thing? Was I losing
empathy? I hope as you read these stories that they encourage you to talk to
your loved ones about your own hopes and fears. My greatest wish is to generate
some much needed conversation about the inevitable and the choices we must
consider. There is no easy way to put it: to ensure that our autonomy is
respected, each of us must choose our path at the end.<o:p></o:p></span></p>
<span face=""Calibri","sans-serif"" style="font-size: 11pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br clear="all" style="break-before: page; mso-special-character: line-break; page-break-before: always;" />
</span>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><o:p> </o:p></span></p>
<div style="mso-element: endnote-list;"><!--[if !supportEndnotes]--><br clear="all" />
<hr align="left" size="1" width="33%" />
<!--[endif]-->
<div id="edn1" style="mso-element: endnote;">
<p class="MsoEndnoteText" style="margin-left: 9pt; text-indent: -9pt;"><a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_ednref1" name="_edn1" style="mso-endnote-id: edn1;" title=""><span class="MsoEndnoteReference"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><span class="MsoEndnoteReference"><span face=""Calibri","sans-serif"" style="font-size: 10pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[i]</span></span><!--[endif]--></span></span></span></a><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> Krakauer E,
Penson RT, Truog RD, et al. Sedation for
intractable distress of a
dying patient: acute palliative care and the
principle of double effect. Oncologist. 2000; 5:53–62.<o:p></o:p></span></p>
</div>
<div id="edn2" style="mso-element: endnote;">
<p class="MsoEndnoteText" style="margin-left: 9pt; text-indent: -9pt;"><a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_ednref2" name="_edn2" style="mso-endnote-id: edn2;" title=""><span class="MsoEndnoteReference"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><span class="MsoEndnoteReference"><span face=""Calibri","sans-serif"" style="font-size: 10pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[ii]</span></span><!--[endif]--></span></span></span></a><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> <span style="mso-bidi-font-weight: bold;">An Official American Thoracic Society
Clinical Policy Statement: Palliative Care for Patients with Respiratory Diseases
and Critical Illnesses. AJRCCM. 2008; 8:912-927.<o:p></o:p></span></span></p>
</div>
<div id="edn3" style="mso-element: endnote;">
<p class="MsoEndnoteText"><a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_ednref3" name="_edn3" style="mso-endnote-id: edn3;" title=""><sup><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><sup><span face=""Calibri","sans-serif"" style="font-size: 10pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[iii]</span></sup><!--[endif]--></span></span></sup></a><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> <span style="mso-bidi-font-style: italic;">13Vacco v Quill, 117 S. Ct 2293(1997).</span><o:p></o:p></span></p>
</div>
<div id="edn4" style="mso-element: endnote;">
<p class="MsoEndnoteText"><a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_ednref4" name="_edn4" style="mso-endnote-id: edn4;" title=""><span class="MsoEndnoteReference"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><span class="MsoEndnoteReference"><span face=""Calibri","sans-serif"" style="font-size: 10pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[iv]</span></span><!--[endif]--></span></span></span></a><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> <span style="mso-bidi-font-style: italic;">Beauchamp TL, The Right to Die as the
Triumph of Autonomy.</span><span style="background: white; color: black;"> </span></span><a href="https://www.ncbi.nlm.nih.gov/pubmed/17162732" title="The Journal of medicine and philosophy."><span style="mso-bidi-font-family: Calibri; mso-bidi-font-style: italic; mso-bidi-theme-font: minor-latin;">J Med
Philos.</span></a><span style="mso-bidi-font-family: Calibri; mso-bidi-font-style: italic; mso-bidi-theme-font: minor-latin;"> 2006; 31(6):643-654</span><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><o:p></o:p></span></p>
</div>
<div id="edn5" style="mso-element: endnote;">
<p class="MsoEndnoteText" style="margin-left: 9pt; text-indent: -9pt;"><a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_ednref5" name="_edn5" style="mso-endnote-id: edn5;" title=""><span class="MsoEndnoteReference"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><span class="MsoEndnoteReference"><span face=""Calibri","sans-serif"" style="font-size: 10pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[v]</span></span><!--[endif]--></span></span></span></a>
<a href="https://www.theonion.com/world-death-rate-holding-steady-at-100-percent-1819564171"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">https://www.theonion.com/world-death-rate-holding-steady-at-100-percent-1819564171</span></a><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><o:p></o:p></span></p>
</div>
<div id="edn6" style="mso-element: endnote;">
<p class="MsoEndnoteText"><a href="file:///C:/Users/jimde/OneDrive/My%20Documents/Book%20versions/FacingDeath%20-%20Finding%20Dignity,%20Hope%20and%20Healing%20at%20the%20End71620.docx#_ednref6" name="_edn6" style="mso-endnote-id: edn6;" title=""><span class="MsoEndnoteReference"><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><span class="MsoEndnoteReference"><span face=""Calibri","sans-serif"" style="font-size: 10pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">[vi]</span></span><!--[endif]--></span></span></a> Sherwin
B. Nuland, <i style="mso-bidi-font-style: normal;">How We Die: Reflections on
Life’s Final Chapter</i> (Random House, Inc.; New York, 1994)<o:p></o:p></p>
</div>
</div>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-53021609121790905942021-03-31T13:59:00.004-07:002021-03-31T13:59:54.978-07:00Kind review from a neurosurgeon<p><span style="color: #0f1111; font-family: Amazon Ember, Arial, sans-serif;"><span style="background-color: white; font-size: 14px;">I've had some kind comments about my book, but greatly appreciate the review below from Dr. Howe, a highly skilled and beloved neurosurgeon in Seattle.</span></span></p><p><span style="background-color: white; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;">"Dr. deMaines’ book, “Facing Death: Finding dignity, Hope and Healing at the End” is intended to get people thinking about care at the end of life and to make their end of life care wishes known. But this book is much more than a manual of options on advanced care directives of various sorts, although all that is in here. Rather this book provides inspiring reading for a wide span of readers, from new doctors and nurses, midcareer professionals and retired ones like myself, for individuals of any age who have people in their lives who are facing death. Throughout the book the reader will absorb the centrality of communication in medical care and thereby enhance their own doctor patient- family- communication.</span></p><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;">Written in a style of a memoir, Dr. deMaine interweaves intellectual balance with patient voices in a variety of his personal clinical encounters. What the reader gains from this memoir style is an understanding of how medical ethics principles emergence directly from patient care, and most clearly demonstrated by expertly conducted doctor patient communication.</span><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;">A vexing clinical problem pulmonologist like Dr. deMaine faced in 1960s and 70s was keeping people alive with incurable lung disease on the newly introduced ventilators. Many patients were horrified by the prospect of being tied to a machine for the rest their life, but they would suffer and die without the ventilator. Withholding and withdrawing ventilator support in the then diminishing era of benign medical paternalism seemed an insurmountable dilemma when the “duty to save life and limb “was paramount. Before there was any guidance from medical ethics committees or medical ethics literature, Dr. deMaine vividly describes conversations with a patient dying from lung disease where mutual respect, listening and kindness led to an end of life care plan which avoided dying with horrifying symptoms of lung failure that did not also tie him to the ventilator. From this story deMaine illustrates two essential features of medical ethics. The patient has the autonomy to choose or refuse treatment, even life sustaining treatment. Now autonomy is the bed rock principle in patient care, and the foundation for attending to end of life choices in person and through advanced care directives. The reader will discover how autonomy, beneficence, doctrine of double effects applies and other principles as well were developed from his practice. But scholarship and intellectual development are not absent in this well researched and referenced book. I think any person serving on a hospital ethics committee would find themselves returning to this book to center them back on a real-life application of a number of other medical ethical principles.</span><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;">Other difficult topics are faced as well, such as medical aid in dying, of assisted suicide, and communicating medical mistakes. Still Other chapters reassure that many of our fears of suffering at the end of life can be ameliorated by learning how effective management of pain and suffering through palliative care and hospice can be. An advanced care directive and statement of goals of care at the end will greatly increase the chance that palliative care will be arranged.</span><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;">And there is some fun in the book, like the time a dog turned up in the surgical operating room.</span><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;">In my judgement, this book adds a significant contribution to the discipline of medical ethics in that the author demonstrates and articulates a branch of ethics of called Virtue ethics. Virtue ethics is one of the major ethics paradigms since the days of Aristotle but has not been robustly discussed in medical ethics literature. Virtue ethics guides by advising one to do what ethical people do. The reader will have an excellent guide to virtue ethics in medicine by reading this book. As Dr. deMaine states, the care of the patient and the care for the patient are fundamental and derive virtues of respect, expertise, kindness, communication scholarship and more are demonstrated.</span><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;">And there is a bonus…. You the reader will get to know Dr. deMaine, which is a pleasure.</span><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;">John F Howe MD.</span><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;">Retired, Clinical Professor of Neurosurgery</span><br style="background-color: white; box-sizing: border-box; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #0f1111; font-family: "Amazon Ember", Arial, sans-serif; font-size: 14px;">University of Washington."</span>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-47434847460636277712021-03-24T13:20:00.004-07:002021-03-28T17:42:04.774-07:00Interview on end of life choices and Death with Dignity -- from Two Harbors, MN<p>Yesterday I was interviewed for a radio broadcast by Katya Goodenough from Two Harbors, Minnesota. <a href="https://drive.google.com/file/d/1geaQKCPIRHSO0RgSNTzJmdpeuWCilFxK/view?usp=sharing">Here is a link if interested.</a> She wanted particularly to ask about my thoughts about Death With Dignity in Washington State, one of the growing number of states which now allow physicians to prescribe medication to hasten death for those expected to die within 6 months.</p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-82005870842462647462021-03-14T17:09:00.000-07:002021-03-14T17:09:51.040-07:00Facing Death talk to Swedenborg Foundation gathering<p></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="408" src="https://www.youtube.com/embed/vE8oaJPooQA" width="490" youtube-src-id="vE8oaJPooQA"></iframe></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Discussion of my book with more emphasis on Swedenborg and ethics.</div><br /> <p></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-30513043121106487912021-02-05T11:51:00.008-08:002021-02-11T16:44:29.587-08:00Kindness should be a factor in the timing and manner of an inevitable death<p><i>Note: One area of ethics that isn't much discussed in medicine is virtue ethics. We frequently talk about autonomy, beneficence and non-maleficence--but how about kindness? Actually, as physicians this should be an underlying principle for all of our care, including when it's time to die. Thus, I'm reposting an article from the Albuquerque Journal that addresses this.</i></p><p> <a href="https://abqjournal-nm.newsmemory.com/" style="font-size: 12px;">Albuquerque Journal</a><span style="font-size: 12px;"> </span><span style="font-size: 12px;">|</span><span style="font-size: 12px;"> </span><a href="https://abqjournal-nm.newsmemory.com/?selDate=20210203&editionStart=Albuquerque+Journal&goTo=A11" style="font-size: 12px;">Page A11</a></p><div id="header" style="border-bottom: 1px solid rgb(204, 204, 204); font-size: 12px; margin: 0px auto; padding: 10px 0px 2px; width: 1091.51px;"><span class="date" style="float: right;">Wednesday, 3 February 2021</span><div class="spacer" style="clear: both;"></div></div><div id="story" style="background: rgb(255, 255, 255); margin: 10px 0px 0px; padding: 0px;"><div class="shareBefore" style="margin-left: 10px;"><a class="addthis_button" href="https://www.addthis.com/bookmark.php?v=250&username=xa-4bfbf95e715dcaab"></a></div><p class="maintitle" style="font-size: 24px; font-weight: bold; line-height: 30px; margin: 8px 0px 8px 10px;"><span class="Fid_11">Aid in dying about compassion and respect for our patients</span></p><p class="abody" style="margin: 10px 20px; padding: 0px;"></p><p class="abody" style="margin: 10px 20px; padding: 0px;"></p><p class="abody" style="margin: 10px 20px; padding: 0px;"><span class="Fid_10" style="font-style: italic;">Kindness should be a factor in the timing and manner of an inevitable death</span></p><p class="abody" style="margin: 10px 20px; padding: 0px;"><span class="Fid_0" style="font-weight: bold;">BY DR. LARA GOITEIN</span></p><p class="abody" style="margin: 10px 20px; padding: 0px;"><span class="Fid_1">PULMONARY AND CRITICAL CARE PHYSICIAN, SANTA FE</span></p><img height="84" src="https://us7lb-cdn.newsmemory.com/newsmemvol2/newmexico/albuquerquejournal/20210203/jd-20210203-pg011-a011-final.pdf.0/img/Image_13.jpg" style="border: none; height: auto; margin: 1.75px 20px; max-width: 85%; padding: 0px;" width="65" /><p class="abody" style="margin: 10px 20px; padding: 0px;"><span class="Fid_2">In his opinion piece “Assisted suicide wrong for doctors, patients” (Jan. 20 Journal), Dr. Anthony Vigil argues the Elizabeth Whitefield End of Life Options Act, which would legalize medical aid in dying in New Mexico, undermines physicians’ identity as healers and how our patients view us. But what threatens our identity and patients’ trust most is when we fail to listen to their wishes with compassion and respect.</span></p><p class="abody" style="margin: 10px 20px; padding: 0px;"><span class="Fid_2">I, too, am a physician who has had much experience with dying patients. While good palliative care can relieve much suffering at the end of life, on rare occasions even the most expert care is not enough. Symptoms like pain, weakness, loss of bodily functions, shortness of breath and nausea may be overwhelming. Patients may spend their last days, weeks or months in discomfort, sedated, and wholly dependent on care by others. They may wish for death but live in terror of just when and how their final moments will arrive.</span></p><p class="abody" style="margin: 10px 20px; padding: 0px;"><span class="Fid_2">Vigil points out the primary reasons listed by patients for requesting medical aid in dying are not pain and physical suffering, but existential suffering such as loss of autonomy, loss of dignity, loss of enjoyment of life, and being a burden on family and caregivers. It is a false dichotomy: physical suffering and psychological and existential suffering are intertwined. But more importantly, are these latter forms of suffering any less important? They are certainly less treatable. I am surprised Vigil feels so confident in addressing these problems with “science, technology, engineering, and mathematics.” There are limits to our powers.</span></p><p class="abody" style="margin: 10px 20px; padding: 0px;"><span class="Fid_2">It is true that in general physicians should be healers, but when death is</span> <span class="Fid_2">imminent and healing no longer possible, the physician’s role should shift from extending life to relieving suffering in accord with their patient’s wishes. This is not a matter of life versus death, but about the timing and manner of an inevitable death. Most physicians today reject the paternalistic notion that terminally ill patients can’t be trusted to know what they want and need to be protected from themselves. The majority of both physicians and the public support legalizing medical aid in dying. Nine states and the District of Columbia have already approved medical aid in dying, as has all of Canada.</span></p><p class="abody" style="margin: 10px 20px; padding: 0px;"><span class="Fid_2">Oregon’s Death with Dignity Act, which is similar to the New Mexico bill, has been in effect for 24 years, and the experience there is reassuring. First of all, it is used only rarely. There were initial concerns that aid in dying would be used mainly by socially vulnerable populations and would come to supplant good palliative care. But there has been no evidence of disproportionate use in minority or uninsured populations nor cases of abuse, and palliative care in Oregon remains among the best in the country. The great majority who seek aid in dying have widespread cancer. About one third of patients who receive the medication never use it but keep it on hand for peace of mind. It is immeasurably comforting for these patients to know that they have control and an option for a quick and merciful death in the event their suffering becomes unbearable despite palliative care.</span></p><p class="abody" style="margin: 10px 20px; padding: 0px;"><span class="Fid_2">As in Oregon, it is likely the N.M. bill would not lead to widespread use of this option. Physicians have a deep professional commitment to heal, and patients almost always want to live. But medical aid in dying is an important option for those few whose suffering just becomes too much. To deny patients this final and most desperate request seems to me a form of abandonment at precisely the time when we physicians are most needed. To help is both compassionate and respectful of patients’ rights to determine their own future. I would remind Vigil the most important part of our identity as physicians is to be kind.</span></p><div class="shareAfter" style="margin-left: 20px;"><a class="addthis_button" href="https://www.addthis.com/bookmark.php?v=250&username=xa-4bfbf95e715dcaab"></a></div><div id="footer" style="border-top: 1px solid rgb(204, 204, 204); font-size: 10px; line-height: 10px; margin: 10px auto 5px; padding-top: 2px; width: 1091.51px;"><span class="tecnavia" style="float: left;"><a href="http://www.tecnavia.com/" style="color: black; text-decoration-line: none;">Powered by TECNAVIA</a></span><span class="copyright" style="float: right; max-width: 500px;"><a href="https://www.abqjournal.com/" style="color: black; text-decoration-line: none;">Copyright (c) 2021 Albuquerque Journal, Edition 02/03/2021</a></span><div class="spacer" style="clear: both;"></div></div></div><div id="links" style="float: right; font-weight: bold; margin: 20px; width: 155px;"><p style="background-color: white; font-family: Verdana, Helvetica, Arial, sans-serif; font-size: 16px; margin: 0px; text-align: center;"><a data-placeholder="xxx1" href="https://abqjournal-nm.newsmemory.com/?selDate=20210203&editionStart=Albuquerque+Journal&goTo=A11" style="color: black; display: block; margin-bottom: 1em; padding: 0px; text-decoration-line: none;">Click here to see this page in the eEdition: <img alt="Page A11" src="https://abqjournal-nm-app.newsmemory.com/newsmemvol2/newmexico/albuquerquejournal/20210203/jd-20210203-pg011-a011-final.pdf.0/low.jpg" style="border: none; margin-right: 4px; margin-top: 2px;" /><br />(Login Required)</a></p><div><br /></div><p></p><p style="background-color: white; font-family: Verdana, Helvetica, Arial, sans-serif; font-size: 16px; margin: 0px; text-align: center;"></p><div class="sharePanel" style="background-color: white; font-family: Verdana, Helvetica, Arial, sans-serif; font-size: 16px;"></div></div>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-84759656572498377132021-01-20T12:58:00.001-08:002021-01-25T08:58:30.472-08:00Book Discussion: Facing Death - Finding Dignity, Hope and Healing at the End<p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Presentation about advance care planning to the Continuing Care Communities of Washington State by Author Jim deMaine, MD</div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="321" src="https://www.youtube.com/embed/2u-sbnV2kWM" width="386" youtube-src-id="2u-sbnV2kWM"></iframe></div><br /> <p></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-68708598802533824242021-01-04T10:30:00.000-08:002021-01-04T10:30:34.547-08:00Book kickoff at Brick and Mortar Book Store<p> A virtual book signing on Zoom took place in recent months, a kickoff for "Facing Death: Finding Dignity, Hope and Healing at the End. I'm interviewed by writer Claudia Rowe, read from the book and respond to questions.</p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/SjkshDoC67k" width="320" youtube-src-id="SjkshDoC67k"></iframe></div><br /><p><br /></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-23438810966233831762021-01-03T19:15:00.002-08:002021-01-03T19:15:49.014-08:00KEXP FM interview about end of life care<p> FM Radio Station KEXP invited me to talk about my writing and teaching about end of life care during my career in pulmonary/critical care medicine. They had been present at my Town Hall talk and wanted to hear more.</p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/JoHF7vd2F8g" width="320" youtube-src-id="JoHF7vd2F8g"></iframe></div><br /><p><br /></p>Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-70612607058750328242020-07-01T07:58:00.001-07:002020-07-01T07:58:40.200-07:00Interview about fear, isolation and death during this COVID-19 pandemic<div dir="ltr" style="text-align: left;" trbidi="on">
Recently Katy Sewall interviewed me for her podcast, This Bittersweet Life. She wanted to talk about the changes in our thinking about death and dying during this strange and disquieting time of the COVID-19 pandemic. You can listen here: <a href="https://bittersweetlife.libsyn.com/episode-320-facing-death-with-jim-demaine">https://bittersweetlife.libsyn.com/episode-320-facing-death-with-jim-demaine</a>.</div>
Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-43356262342251664752020-05-14T10:33:00.002-07:002020-05-14T10:33:49.233-07:00Sooner or later we all face death. Will a sense of meaning help us?<div dir="ltr" style="text-align: left;" trbidi="on">
Psychiatrist Warren Ward<a href="https://aeon.co/ideas/sooner-or-later-we-all-face-death-will-a-sense-of-meaning-help-us?utm_source=Aeon+Newsletter&utm_medium=email&utm_campaign=PRELAUNCH_PSYCHE_DAILY&utm_source=Aeon+Newsletter&utm_campaign=cd851fab7d-EMAIL_CAMPAIGN_2020_05_11_05_20&utm_medium=email&utm_term=0_411a82e59d-cd851fab7d-69405433"> writes in Aeon</a>: "<span style="background-color: white; font-family: "Academica Book Pro", Times, Georgia, serif;">As a doctor, I am reminded every day of the fragility of the human body, how closely mortality lurks just around the corner. As a psychiatrist and psychotherapist, however, I am also reminded how empty life can be if we have no sense of meaning or purpose. An awareness of our mortality, of our precious finitude, can, paradoxically, move us to seek – and, if necessary, create – the meaning that we so desperately crave."</span><br />
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<span style="background-color: white; font-family: "Academica Book Pro", Times, Georgia, serif;">I wonder, during this COVID-19 pandemic, whether life will become more meaningful for us as we think more about our own mortality. Will it make us a better person?</span></div>
Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-39026700647768718662020-04-04T10:24:00.001-07:002020-04-04T10:27:03.795-07:00The option of a ventilator – my thoughts for seniors with COVID-19 pneumonia<div dir="ltr" style="text-align: left;" trbidi="on">
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I’ve been asked a lot about what our options are if we get very sick with COVID-19 pneumonia. Below are my recorded thoughts as of April 1st. We are still early on and there is not extensive data yet. So please think about your options and discuss them with your loved ones and physician. Sorry the audio quality isn’t better. And no, I’m not on a beach somewhere 🙂</div>
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Useful reference sites about advance care planning.</div>
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<a href="https://jamanetwork.com/journals/jama/fullarticle/2763952" rel="noreferrer noopener" style="background: transparent; border: 0px; color: #743399; margin: 0px; padding: 0px; vertical-align: baseline;" target="_blank">The Importance of Addressing Advance Care Planning and Decisions About Do-Not-Resuscitate Orders During Novel Coronavirus 2019 </a> (Curtis/Kross/Stapleton; JAMA 2020; Epub 3-27-20)</div>
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Advance Care Planning Resources: <strong style="background: transparent; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><a href="http://www.prepareforyourcare.org/" rel="noreferrer noopener" style="background: transparent; border: 0px; color: #743399; margin: 0px; padding: 0px; vertical-align: baseline;" target="_blank">www.prepareforyourcare.org</a></strong> – excellent site to start with. Has videos, essays and all the directives.</div>
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<strong style="background: transparent; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><a href="http://www.theconversationproject.org/" rel="noreferrer noopener" style="background: transparent; border: 0px; color: #743399; margin: 0px; padding: 0px; vertical-align: baseline;" target="_blank">www.theconversationproject.org</a></strong> – site started by Ellyn Goodman after the death of her mother which did not go well. Lots of good information.</div>
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Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com1tag:blogger.com,1999:blog-6173095375385680490.post-35252890618536862082019-06-26T09:14:00.000-07:002019-06-26T09:14:24.917-07:00Is rational suicide an oxymoron?<div dir="ltr" style="text-align: left;" trbidi="on">
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<i>Ed Note: Aging is all about loss and resilience. But what if we're on the path to dementia and don't want to go there. Is it time to "check out?" The choice of VSED (Voluntary Stopping Eating and Drinking) is likely much more common than we think, especially in nursing homes. But other methods such as helium or nitrogen head masks have been chosen by advocates of the Hemlock Society. It begins to sound creepy, but we need to have discussions. How far does individual liberty extend in end of life choices?</i></div>
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<i>From Kaiser Health News:</i> Ten residents slipped away from their retirement community one Sunday afternoon for a covert meeting in a grocery store cafe. They aimed to answer a taboo question: When they feel they have lived long enough, how can they carry out their own swift and peaceful death?</div>
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The seniors, who live in independent apartments at a high-end senior community near Philadelphia, showed no obvious signs of depression. They’re in their 70s and 80s and say they don’t intend to end their lives soon. But they say they want the option to take “preemptive action” before their health declines in their later years, particularly due to dementia.</div>
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More seniors are weighing the possibility of suicide, experts say, as the baby boomer generation — known for valuing autonomy and self-determination — reaches older age at a time when modern medicine can keep human bodies alive far longer than ever before.</div>
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IF YOU NEED HELP</h3>
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If you or someone you know has talked about contemplating suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255, or use the online <a href="http://www.suicidepreventionlifeline.org/GetHelp/LifelineChat.aspx" rel="noopener noreferrer" style="background-color: transparent; box-sizing: border-box; color: #0075c9; text-decoration-line: none;" target="_blank">Lifeline Crisis Chat</a>, both available 24 hours a day, seven days a week.</div>
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People 60 years and older can call the Institute on Aging’s 24-hour, toll-free <a href="https://www.ioaging.org/services/all-inclusive-health-care/friendship-line" rel="noopener noreferrer" style="background-color: transparent; box-sizing: border-box; color: #0075c9; text-decoration-line: none;" target="_blank">Friendship Line</a> at 800-971-0016. IOA also makes ongoing outreach calls to lonely older adults.</div>
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The group gathered a few months ago to meet with Dena Davis, a bioethics professor at Lehigh University who defends “rational suicide” — the idea that suicide can be a well-reasoned decision, not a result of emotional or psychological problems. Davis, 72, has been vocal about her desire to end her life rather than experience a slow decline due to dementia, as her mother did.</div>
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The concept of rational suicide is highly controversial; it runs counter to many societal norms, religious and moral convictions and the efforts of suicide prevention workers who contend that every life is worth saving.</div>
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“The concern that I have at a social level is if we all agree that killing yourself is an acceptable, appropriate way to go, then there becomes a social norm around that, and it becomes easier to do, more common,” said Dr. Yeates Conwell, a psychiatrist specializing in geriatrics at the University of Rochester and a leading expert in elderly suicide. That’s particularly dangerous with older adults because of widespread ageist attitudes, he said.</div>
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As a society, we have a responsibility to care for people as they age, Conwell argued. Promoting rational suicide “creates the risk of a sense of obligation for older people to use that method rather than advocate for better care that addresses their concerns in other ways.”</div>
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A Kaiser Health News <a href="https://khn.org/news/suicide-seniors-long-term-care-nursing-homes/" rel="noopener noreferrer" style="background-color: transparent; box-sizing: border-box; color: #0075c9;" target="_blank">investigation in April</a> found that older Americans — a few hundred per year, at least — are killing themselves while living in or transitioning to long-term care. Many cases KHN reviewed involved depression or mental illness. What’s not clear is how many of these suicides involve clear-minded people exercising what Davis would call a rational choice.</div>
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Suicide prevention experts contend that while it’s normal to think about death as we age, suicidal ideation is a sign that people need help. They argue that all suicides should be avoided by addressing mental health and helping seniors live a rich and fulfilling life.</div>
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But to Lois, the 86-year-old woman who organized the meeting outside Philadelphia, suicides by older Americans are not all tragedies. Lois, a widow with no children, said she would rather end her own life than deteriorate slowly over seven years, as her mother did after she broke a hip at age 90. (Lois asked to be referred to by only her middle name so she would not be identified, given the sensitive topic.) In her eight years at her retirement community, Lois has encountered other residents who feel similarly about suicide. But because of stigma, she said, the conversations are usually kept quiet.</div>
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Lois insisted her group meet off-campus at Wegmans because of the “subversive” nature of the discussion. Supporting rational suicide, she said, clashes with the ethos of their continuing care retirement community, where seniors transition from independent apartments to assisted living to a nursing home as they age.</div>
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Seniors pay six figures to move into the bucolic campus, which includes an indoor heated pool, a concert hall and many acres of wooded trails. They are guaranteed housing, medical care, companionship and comfort for the rest of their lives.</div>
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“We are sabotaging that,” Lois said of her group. “We are saying, thank you very much, but that’s not what we’re looking for.”</div>
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Carolyn, a 72-year-old member of the group who asked that her last name be withheld, said they live in a “fabulous place” where residents enjoy “a lot of agency.” But she and her 88-year-old husband also want the freedom to determine how they die.</div>
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A retired nurse, Carolyn said her views have been shaped in part by her experience in the HIV/AIDS epidemic. In the 1990s, she created a program that sent hospice volunteers to work with people dying of AIDS, which at the time was a death sentence.</div>
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She said many of the men kept a stockpile of lethal drugs on a dresser or bedside table. They would tell her, “When I’m ready, that’s what I’m going to do.” But as their condition grew worse, she said, they became too confused to follow through.</div>
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“I just saw so many people who were planning to have that quiet, peaceful ending when it came, and it just never came. The pills just got scattered. They lost the moment” when they had the wherewithal to end their own lives, she said.</div>
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Carolyn emphasized that she and her husband do not feel suicidal, nor do they have a specific plan to die on a certain date. But she said that while she still has the ability, she wants to procure a lethal medication that would offer the option for a peaceful end in the future.</div>
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“Ideally, I would have in hand the pill, or the liquid or the injection,” she said. She said she’s embarrassed that, as a former nurse, she doesn’t know which medication to use or how to get it.</div>
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Maine recently became the ninth state to allow medical aid in dying, which permits some patients to get a doctor’s prescription for lethal drugs. That method is restricted, however, to people with a terminal condition who are mentally competent and expected to die within six months.</div>
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Patients who aren’t eligible for those laws would have to go to an “underground practice” to get lethal medication, said Dr. Timothy Quill, a palliative care physician at the University of Rochester School of Medicine. Quill became famous in the 1990s for <a href="https://www.nytimes.com/1991/03/07/us/doctor-says-he-gave-patient-drug-to-help-her-commit-suicide.html" rel="noopener noreferrer" style="background-color: transparent; box-sizing: border-box; color: #0075c9;" target="_blank">publicly admitting</a> that he gave a 45-year-old patient with leukemia sleeping pills so she could end her life. He said he has done so with only one other patient.</div>
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Quill said he considers suicide one option he may choose as he ages. “I would probably be a classic [case] — I’m used to being in charge of my life.” He said he might be able to adapt to a situation in which he became entirely dependent on the care of others, “but I’d like to be able to make that be a choice as opposed to a necessity.”</div>
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Suicide could be as rational a choice as a patient’s decision to end dialysis, after which the patient typically dies within two weeks, he said. But when patients bring up suicide, he said, it should launch a serious conversation about what would make their life feel meaningful and their preferences for medical care at the end of life.</div>
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Clinicians have little training on how to handle conversations about rational suicide, said Dr. Meera Balasubramaniam, a geriatric psychiatrist at the New York University School of Medicine who has <a href="https://www.ncbi.nlm.nih.gov/pubmed/29500824" rel="noopener noreferrer" style="background-color: transparent; box-sizing: border-box; color: #0075c9;" target="_blank">written about the topic</a>. She said her views are “evolving” on whether suicide by older adults who are not terminally ill can be a rational choice.</div>
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“One school of thought is that even mentioning the idea that this could be rational is an ageist concept,” she said. “It’s an important point to consider. But ignoring it and not talking about it also does not do our patients a favor, who are already talking about this or discussing this among themselves.”</div>
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In her discussions with patients, she said, she explores their fears about aging and dying and tries to offer hope and affirm the value of their lives.</div>
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These conversations matter because “the balance between the wish to die and the wish to live is a dynamic one that shifts frequently, moment to moment, week to week,” said Conwell, the suicide prevention expert.</div>
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Carolyn, who has three children and four grandchildren, said conversations about suicide are often kept quiet for fear that involving a family member would implicate them in a crime. The seniors also don’t want to get their retirement community in trouble.</div>
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In some of the cases <a href="https://khn.org/news/suicide-seniors-long-term-care-nursing-homes/" rel="noopener noreferrer" style="background-color: transparent; box-sizing: border-box; color: #0075c9;" target="_blank">KHN reviewed</a>, nursing homes have faced federal fines of up to tens of thousands of dollars for failing to prevent suicides on-site.</div>
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There’s “also just this hush-hush atmosphere of our culture,” said Carolyn. “Not wanting to deal with judgment — of others, or offend someone because they have different beliefs. It makes it hard to have open conversations.”</div>
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Carolyn said when she and her neighbors met at the cafe, she felt comforted by breaking the taboo.</div>
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“The most wonderful thing about it was being around a table with people that I knew where we could talk about it, and realize that we’re not alone,” Carolyn said. “To share our fears — like if we choose to use something, and it doesn’t quite do the job, and you’re comatose or impaired.”</div>
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People who attempt suicide and survive may end up in a psychiatric hospital “with people watching you all the time — the complete opposite of what you’re trying to achieve,” Quill noted.</div>
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At the meeting, many questions were practical, Lois said.</div>
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“We only get one crack at it,” Lois said. “Everyone wants to know what to do.”</div>
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Davis said she did not have practical answers. Her expertise lies in ethics, not the means.</div>
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Public opinion research has shown shifting opinions <a href="https://khn.org/news/as-doctors-drop-opposition-aid-in-dying-advocates-target-next-battleground-states/" rel="noopener noreferrer" style="background-color: transparent; box-sizing: border-box; color: #0075c9;" target="_blank">among doctors</a> and the general public about hastening death. Nationally, 72% of Americans believe doctors should be allowed by law to end a terminally ill patient’s life if the patient and his or her family request it, according to a <a href="https://news.gallup.com/poll/235145/americans-strong-support-euthanasia-persists.aspx" rel="noopener noreferrer" style="background-color: transparent; box-sizing: border-box; color: #0075c9;" target="_blank">2018 Gallup poll</a>.</div>
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Lois said she’s seeing societal attitudes begin to shift about rational suicide, which she sees as the outgrowth of a movement toward patient autonomy. Davis said she’d like to see polling on how many people share that opinion nationwide.</div>
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“It seems to me that there must be an awful lot of people in America who think the way I do,” Davis said. “Our beliefs are not respected. Nobody says, ‘OK, how do we respect and facilitate the beliefs of somebody who wants to commit suicide rather than having dementia?’”</div>
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<em style="box-sizing: border-box;">If you or someone you know has talked about contemplating suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255, or use the </em><a href="http://suicidepreventionlifeline.org/chat/" rel="noopener noreferrer" style="background-color: transparent; box-sizing: border-box; color: #0075c9;" target="_blank"><em style="box-sizing: border-box;">online Lifeline Crisis Chat</em></a><em style="box-sizing: border-box;">, both available 24 hours a day, seven days a week.</em></div>
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<em style="box-sizing: border-box;">People 60 and older can call the Institute on Aging’s 24-hour, </em><a href="https://www.ioaging.org/services/all-inclusive-health-care/friendship-line" rel="noopener noreferrer" style="background-color: transparent; box-sizing: border-box; color: #0075c9;" target="_blank"><em style="box-sizing: border-box;">toll-free Friendship Line</em></a><em style="box-sizing: border-box;"> at 800-971-0016. IOA also makes ongoing outreach calls to lonely older adults.</em></div>
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Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com0tag:blogger.com,1999:blog-6173095375385680490.post-57289832351396277382019-06-21T16:09:00.000-07:002019-06-21T17:41:41.099-07:00One More Trip to Guam<div dir="ltr" style="text-align: left;" trbidi="on">
Marie is too young to have a fatal diagnosis. She has <a href="http://www.americanheart.org/presenter.jhtml?identifier=4752">Primary Pulmonary Hypertension</a>. This condition is called "Primary" because we have no idea of the cause. Medical lingo has a variety of ways of labeling unknown causes such as "Idiopathic" or "Essential", but in Marie's case, it's "Primary" - as if that label somehow shows some understanding.<br />
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Actually, I do understand that this is a devastating diagnosis which tends to affect adult women about three times as often as men. <br />
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Her family physician sends her to me for puzzling shortness of breath. Marie is a delightful soft spoken woman of Asian descent, born in Guam but moving to the USA many years ago. She has raised three children, been healthy, and helps out in her husbands business as a bookkeeper. She has a beautiful smile and tends to downplay her symptoms. <br />
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A non-smoker, her lung functions are normal, but she has some swelling of her ankles. Her heart tones are normal except for a split second heart sound, a sign of delayed closure of the valve leading from the heart to the lungs - the pulmonic valve. The EKG shows strain in the right ventricle. All this points to possible pulmonary hypertension which is confirmed later by heart catheterization and cardiac ultrasound.<br />
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We rule out things like <a href="http://en.wikipedia.org/wiki/Fen-phen">fen-phen</a> or blood clots and begin some drug treatment to try to dilate the vessels going to her lungs. Essentially all the blood returning from the body needs to be pumped out to the lungs where it gives off carbon dioxide and picks up oxygen. It's normally a low pressure system, but not in Marie's case.<br />
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Over the next few years she begins to fail. Other drugs are tried even a battery powered continuous IV. Oxygen is now needed. Marie somehow arranges an annual trip to Guam, her birthplace where many relatives still reside. Between office visits, she hardly ever calls and we have to reach out to see what's going on.<br />
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"Marie, how are you doing?"<br />
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"Oh, just fine. A little limited but I can't complain."<br />
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I have her come in. There's no doubt things are worsening and that more drastic measures need to be considered.<br />
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"Marie, we need to have a talk about next steps. Your cardiac echo is showing very high pulmonary artery pressure. This is becoming life threatening. The drugs are no longer working well. I'd like to refer you to the University Hospital to consider the possibility of lung transplantation."<br />
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"Oh, doctor. I'd never want anything like that."<br />
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"Why not?" <br />
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"Well you see, I'm at peace with God. What will be will be. I don't expect any miracles. Surgery seems so risky to me. I think I'd rather just go on."<br />
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I ask Marie to bring in her husband Gerald who is hardly ever in the exam room with her. I want to make sure he and the children understand what the situation is. She smiles at him when I bring up lung transplantation. Gerald smiles back at her and doesn't show frustration, "Look doctor, we've already talked about this. She doesn't want surgery. She knows her time is short, and we're flying back to Guam next week for a month's visit."<br />
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After more conversation, I begin to understand that they are further along in accepting her impending death than I am. They are Catholic, having a strong faith along with a kind of fatalism that I don't often see in my practice. They have accepted her destiny, while I'm still ready to fight on!<br />
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I OK the oxygen use on the airline and they have arranged for oxygen in Guam. During that month I receive a postcard basically saying, "Don't worry, I'm OK."<br />
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But on return to Seattle, Marie is worse. She can no longer walk across the room, has episodes of severe shortness of breath, and is becoming bed-bound. Marie and Gerald agree to a hospice referral. Hospice steps in with their usual grace and provides amazing support to Marie and the family.<br />
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From that point on I receive mainly electronic progress reports from the hospice nurses and an occasional call for medications. Small doses of palliative medications are keeping her comfortable.<br />
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Then the hospice nurse calls me, "Doctor deMaine, we're wondering if you could visit Marie at home. She and the family would really like to see you."<br />
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I don't know what to expect when I leave the office at 6PM to stop by their Bellevue home. The house is in a pleasant well groomed neighborhood. A child shyly answers the door and calls for her Grandpa, Gerald. The scene surprisingly seems festive to me. Food abounds on the large dining room table, music is playing, and kids are running around playing games. The living room has been transformed into a bed room. There in the middle of it all is Marie. Her hospital bed's head is propped up a bit so she can see. A sleepy smile appears on her face when she sees me.<br />
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"Why don't you get something to eat doctor, you must be tired and hungry."<br />
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I sit with her for awhile, listen to her chest with my stethoscope and hold her hand. The warmth and love surrounding her and her family is palpable. I feel tremendous respect for her emotional strength. <br />
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Within a week Marie is gone from this life. She has left a beautiful legacy of love and acceptance of death - a blessing for her family, and me too. I come away with the hope that I can some day face my own death with such equanimity, and that I can have my loved ones close by.</div>
Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com1tag:blogger.com,1999:blog-6173095375385680490.post-68405520696040656702019-06-15T15:00:00.000-07:002019-06-15T15:19:51.174-07:00A Note From Israel<div dir="ltr" style="text-align: left;" trbidi="on">
<i>Below is a commentary that I have permission to pass on from Dr. Leibovich. It points out to me that the issue of forcing the dying patient into the hospital may be an international problem, especially in the more developed countries.</i><br />
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"Today I found your blog on End of Life issues. I spent several hours reading all your posts, and I wanted to thank you for writing.<br />
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I want to apologize for my basic English, but I hope you'll understand. I wish I could write like you do…<br />
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I am a family physician in a Kibbutz in Israel and I take care of almost all the people in the Kibbutz, from birth to death. I am faced with end of life issues quite often, and I feel that I have the exact same views on this like you. I am fortunate to be able to help many patients and families to avoid futile hospital care, and this is one of the things I am very proud of.<br />
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A few months ago I took care of my stepfather who lived in a fancy place for old people who can take care of themselves and live alone in a nice flat, but they have a restaurant, have cultural activities etc, in a big city. (I don't know what this kind of place is called in English – here it's called something like "sheltered living"). At the age of 89 he started getting weaker and needed more and more help with his daily activities, until finally he needed constant care. Cancer was diagnosed. We got someone to take care of him 24 hours a day. When he got to the stage where he needed a wheelchair the management of this place did whatever they could to get him to leave – to a nursing home (with four people in a hospital bed in a room), a hospital or whatever. He had already sold his previous home, and he expected to live in this place for the rest of his life. He was alert and understood they wanted to get rid of him, as this spoiled their nice place for "the young at heart". They referred me to the contract where it says that this is a place for independent people. I managed to take care of him in his flat and refused to take him to the hospital, as this was his explicit wish, and we all knew that there was nothing they could do better in the hospital than we could do in his own home and bed. In the last week of his life I was there most of the time, gave him medications against pain, and he passed away in his bed surrounded by those who loved him. I was very happy to have been able to do this for him. I was very sad that this had to be done fighting the management all the way. They threatened me that I was denying him adequate care in a hospital, where he should be in his situation. I ignored them as I knew his time was getting short, and I didn't believe they would try to evacuate him forcefully in his situation. He passed away a day before another meeting they set up to tell me I had to take him somewhere else.<br />
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So I am glad to read your stories that show me that I am not alone in the thought that if there is nothing more medicine can do the best place for a person to finish his life is in his own home, if this is what he wants.<br />
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All the best, Mira Leibovich, MD - Israel"</div>
Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com2tag:blogger.com,1999:blog-6173095375385680490.post-32416481805666180102019-05-28T10:22:00.000-07:002019-05-28T15:07:54.441-07:00Forever Young - Pete Seeger at 91<div dir="ltr" style="text-align: left;" trbidi="on">
As I grow older, I find it so refreshing to be around my grandchildren. It's their idealism mixed with innocence and craziness that attracts me and carries me back many years. Also, I find it exciting and pleasing when my contemporaries "act young" - being willing to overlook their health complaints, to try new adventures, to volunteer, to connect with others, to sing and to dance.<br />
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All this reminds me of <a href="https://www.youtube.com/watch?v=Ds8IevHRPGM">Bob Dylan's song, "Forever Young"</a>. Also when Steve Jobs died, <a href="http://www.openculture.com/2011/10/nora_jones_sings_bob_dylans_forever_young.html">Norah Jones played this song in tribute</a>.<br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Ezyd40kJFq0/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/Ezyd40kJFq0?feature=player_embedded" width="320"></iframe></div>
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But my all time favorite version of "Forever Young" is the 91 year old <a href="http://latimesblogs.latimes.com/music_blog/2012/03/pete-seeger-forever-young-bob-dylan-amnesty-international.html">Pete Seeger voicing this song with the Rivertown Children's Choir</a> from Beacon, NY - Pete's home town along the Hudson River. Pete couldn't really sing at that age, so a<a href="http://villagestudios.com/amnesty-pete-seege/"> voice-over with the children's choir</a> was professionally produced with amazing video and sound mixing.<br />
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He died peacefully on January 27, 2014, at the age of 94. He was chopping wood until 10 days before his death. According to Wikipedia, "When asked about his religious or spiritual views, Seeger replied: 'I
feel most spiritual when I’m out in the woods. I feel part of nature.
Or looking up at the stars. [I used to say] I was an atheist. Now I
say, it’s all according to your definition of God. According to my
definition of God, I’m not an atheist. Because I think God is
everything. Whenever I open my eyes I’m looking at God. Whenever I’m
listening to something I’m listening to God.'"<br />
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May Pete's charm, enthusiasm, and music keep us all forever young. <br />
<a href="http://en.wikipedia.org/wiki/Pete_Seeger#cite_note-UU-17"></a><br />
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Jim deMaine, MDhttp://www.blogger.com/profile/15305598245850297381noreply@blogger.com1