Category Archives: Do-Not-Resuscitate

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Letting Go, the HARDEST, Decision

On difficult decisions of terminal care, because it’s hard, and we will all have to face something like this at one time in our lives or another, maybe with our own loved ones, maybe, when we get older ourselves…translated…

In This Process of “Letting Go”, it’s Next to Impossible for Those Who Aren’t in the Process to Know What Goodbye is Like………

The idiom of “long-term sickness brings NO good son”.  There’d been the news reports on this matter, and, most of the people after hearing, they’d only felt chilled, or, that it was only, matter-of-fact.  But in the medical realm, we watched the younger generations shouldered up the responsibilities of caring for their elders until the end; and yet, with the worsening of the elders’ conditions, the caretakers usually felt burned out, and started thinking of “letting go”.  And, in this process of letting go, the heavy heart of the love for ones’ next-of-kin, and the sense of responsibilities, nobody on the outside can understand.

Insomnia is the Norm

Mr. Chen is seventy-six, eight years ago, he’d started dialysis, because he was the C.E.O. of a company, even as on Wednesdays he was due for the procedures, he’d still gone to his office to make the rounds first, visiting his old clients regularly.

At the start of last year, he’d started feeling the lower back pains, at first, he thought it was sciatica, after he had an MRI, it was the granulomatous spondylitis, and even as the surgery helped alleviate the symptoms, but, because he was bedridden too long after the surgery, his an elder, and a dialysis patient too, losing his muscle mass had greatly reduced his physical activity levels, and in the end, he’d needed his family to help him get through the days of his normal living.

illustration from UDN.com

This authority in business, a C.E.O., suddenly became someone who can’t control his own body, a patient, Mr. Chen’s moods altered as well.  But, as his families considered placing him into a nursing home facility, Mrs. Chen decided to shoulder all of his care on other own.

As she’d come in to get her insomnia treated, I’d asked her, if her body could take it?  She’d said, she’s older, and as her husband hollered, she’d had to go to him quickly, surely, there was, enormous stress on her, in the past six months, she’d started feeling the strains.  But, thinking about “letting go” of her husband whom she’d stayed close to for half a century’s time, she couldn’t, accept that……………

Her First Words Were “I Want to Go Home”

Another elderly woman, Grandma Shih, who had kidney problems due to her diabetes who is a regular at my clinic, I’d been her physician for more than decades, I’d gotten to know her families well, knew that her offspring took care of her living needs daily, so her kidney function was quite stabilized.  Once I’d thought, that she will never need dialysis, but, her heart failed, and at the age of ninety-three, she’d entered the line of dialysis.

There would be the many situations in the elderly population after the dialysis especially, and, a more complex set of complications compared to the younger generations, for instance, infections from bacteria or virus, or, hemorrhages, it’d made her come in and out of the hospital many a time, she’d become, weakened, in the end, she’d relied on the feeding tubes, and I saw her son, with his eyes red, as he’d, fed the formula into his own mother’s feeding tubes, and I’d felt really bad, and, can’t believe, that Grandma Shih would need this sort of an end-of-life care for her.

As she choked on her own vomit that final time, Grandma Shih lost her vitals on the way to the hospitals, because the conditions were critical then, we’d immediately intubated her, although afterwards, the families held different opinions on intubation, but, at the moment, it was emergent.  Luckily, the elderly pulled through, and started breathing on her own, it’s just that as she was discharged from the hospitals, she’d become, bedridden, and her days and nights were, flipped, causing too much strain on her loved ones, as well as the nurse’s aide too.

Because of necessity, they’d found a facility that can perform the dialysis for her, placed the elderly woman in the home, so she could get the care she’d needed.  At first, as the son went to visit, Grandma Shih remained silent, and her eyes couldn’t focus; but after a week, she’d recalled her son’s name, and started stating, “I want to go home”.  And, this made her son started blaming himself for deciding to place his own mother in a nursing home facility.

In the final passage of her life, Grandma Shih continued staying in the nursing home facility.  Six months after she’d passed, her son told me, “Sometimes I’d regretted it, not known, if I’d done right by her or not”, even if they couldn’t watch over Grandma Shih around the clock—that seemingly easier option became, the road block he tried to cross over his whole life.

Those with the long-term illnesses, are the ones suffering, and, the primary caretakers around them are, too strained, it is a difficult choice, letting go, or not; if you’d chosen to not let go, you’d be straining yourself, and, you have to feel the pains and sufferings of the ones you love dearly; but as you’d selected to let go, you are filled with the unwillingness of letting them die, and this may cause you to regret it for the rest of your lives.

And so, there you have it, this is a difficult decision, that we will all face someday, maybe it’s with our own parents, or, when we get older ourselves, and, there’s still no right or wrong on this, and, that’s just, how life goes, sometimes, we’re, just forced to make these hard decisions for the ones we love dearly, because we don’t want them to suffer anymore, and sometimes, we choose to keep them alive, because we aren’t, ready, to say goodbye yet, and, by doing that, we’re, prolonging their, suffering.

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In a Moment’s Time, the Decisions of Not Signing the DNR, She Was Intubated, and Was Saved

Two cases of the means of intubation here, but with, totally, different outcomes, on life and death, off of the Front Page Sections, translated…

In the times of outbreaks, the severely symptomatic had signed their DNR, but, the outcomes were, not the same, some, at the moment of critical conditions, retracted the signing of the DNR, intubated and recovered.  But there were those patients whom, not knowing what was happening, signed the DNR, but in the advices of other physicians from other hospitals, retracted, and transferred, had the ECMO placed in, and still died.

The woman, Chen in her sixties with diabetes, was confirmed of contraction, sent to a specialty ward for MERS-CoV of a major hospital in Taipei, she wasn’t good, had a serious case of pneumonia, with her blood sugar rising up, and kidney malfunction, her conditions worsened, and the hospitals put her on dialysis.

Chen told, that back then, the medical staff members wanted her to sign the DNR, and stated it clearly, “This is for your own good, also, for the sake of your offspring!”, and so she’d, signed it, and, checked the box of “no intubation in emergency resuscitation”.

But, at the other nurses’ advise, she’d, retracted the consent forms, and this decision seemed to have, saved her life, a few days later, she had respiratory failure, the doctors intubated her, and actively treated her, used the steroids, and she’d turned for the better, and was out of the hospital safely in the end.

the medical staff members intubating a patient! Photo from online

The sixty-two-year-old Mr. Shih didn’t have such good luck, he was confirmed of contraction last May on the thirtieth, was hospitalized at the hospital nearby to his home, within two days of admittance into the hospital, the medical staff members tried actively persuading him to sign the DNR, and he’d trusted the medical professionals’ advice, and signed it.

Mrs. Shih had been confirmed of contraction days earlier, and was treated at a different hospital, as she’d learned of her husband’s signing his DNR, she’d discussed it with friends, of them, one who is a physician advised against it, reason being that her husband isn’t elderly, nor did he have any serious illnesses.  And so, she’d tried hard to persuade her husband to get the DNR retracted.

A couple of days later, Mr. Shih’s conditions took a turn for the worst, his primary treating physician called Mrs. Shih up, “Intubation or not, it’s a hope, it’s quite painful for the patients to be intubated, so many patients who’d been intubated didn’t make it.”

The following day, the physician called again, “if you don’t sign the papers, when the time comes, we will, shock him with the electrodes, and, the CPR we perform on him may break his ribs.”, but Mrs. Shih decided to get her husband intubated.  A couple of days later, the hospital told her that her husband needed around-the-clock medical care, and transferred him to a medical center up north.  But because of the critical condition Mr. Shih was in, they’d put the ECMO in, but the sudden internal bleeding, even as the paramedics did their best, he still passed.

And so, this is on the decisions of life or death, made on a dime, and we are faced with these difficult decisions about our loved ones, especially the elderly family members, and, there’s still no right or wrong way to approach this, and, usually, these moments came too quickly, that we won’t get the time to make that list of pros and cons, and then, decide what we want to do for our, loved ones.

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This, Final, Mile…

In the, “home stretch”, and, we’re, almost, there…

This, final, mile of life had been, too, difficult for you, you’d been, in and, out of the hospital, and, you’d, “survived” through each and every one of your, emergency visits.

This, final, mile, is still, not yet done for you, but, as you grow weaker by the day, I’d, wondered, when will your, suffering, end?  And, how much longer, must you be, tortured, like so?

This, final, mile, it wasn’t, supposed to be, easy, not for you because you do NOT deserve, an, easy death.  This final, mile, you’d been, admitted, released, readmitted, rereleased, from the hospital, again, and again, and again.

in this, “home stretch”…

photo from online

And your families, get, trapped, in the signing of your DNR, over, over, over, and over again, and each and every single time those E.R. nurses asked about whether or not you’re, DNR, they would, battle with themselves, as well, as each other.

They don’t want you to suffer, but, having you for one more day, well, that’s, one extra day they will get, with you………

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Decisions

The decisions to stop treatment, or to, continue it, weighing the pros and cons of it, over, over, and over again, in our minds, and, we can only pray that in the end, we’d, made the, right choices by our loved ones.

Upon reading Marcie’s “Difficult Choice” on August 25th, I was moved, this hard-to-master lesson of life, is, harder to solve than the, mathematical, equations.

I was forty-two on the year, thought of how at age forty-two, my father caught me, who let out the very first cries of my life, and how time flew quickly by, turned all our hairs white, made him hunched in the back, and, eroded away, his aging, skins.  I’d squatted down, helplessly, in the hallways of the hospital, with my arms around my knees, I’d, broken down and cried.  The sun still radiant outside, while my world had, crumbled down, no longer, is it, a full-circle again.

this…

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photo from online

After the marrow was extracted, the biopsies on his liver done, I’d, pushed him back to his ward.  “Ouch!” that was the only word he’d, mumbled aloud after he came to, following that, he’d, drifted into that cycle of, never-ending, eternal, waking and sleeping.

The eyes behind the glasses, with that genuineness about it, said, “sir is too elderly and too weakened in physical strengths, I’m afraid, that he won’t able to get through the chemotherapy or the surgeries, you and your families must make up your minds, don’t leave the regrets for tomorrow, the patients are in pain, the families, in even more, pain.”  The young resident stated these words, that, made my heart twisted up even tighter, can it, not be, a “multiple choice” question?

Three years ago, my eldest uncle fell seriously ill, my older cousins couldn’t let him go, his life was, spared, but, he was kept alive, with all those, tubes going in and out of his body, it’d, made the families, relatives, and friends wondered, can we, tie him down with love, to save his body, because we don’t want him to go?  Then, two months later, he’d gone, and, my older cousin kneeled down in front of the altar, and cried like hell, and blamed himself for making the wrong decisions to save his own father then, that he shouldn’t have, put his own father through those two more months’ worth of, trials in the body.

AS my younger brother heard the surgeon’s statements, he’d exclaimed aloud, “of course, SAVE him!”  “my father’s a military man, he would NOT want to live on like this, I want to save him too, but, as his daughter, I know I can’t be, so, selfish”, I’d, finally, got those, words out, and after that, my heart had a hole in it.  My youngest sister cried, shook her head, and waved her hands no too, she was, my father’s, favorite, youngest child, it’s, simply, too difficult, for her, to voice her thought on the matter.

or this…

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saying their, final, goodbyes…and letting go…photo from online

I’d, pushed that hospital bed, with all his belongings, took him to the hospice ward.  It is, very hard to describe what it’s like in there, there are the hopes and expectations of getting out one day on all the other, floors, while here, the patients are, walking, a step closer to death by the day, but it’s, not just that.

As we entered into the hospice, my crying, stopped, the sorrows are, all over the places, but my father looked, more at peace, and, as he woke, he’d said, apologetically to me, “it’d been trying on you”.  my foolish dad, can you, breathe, a bit longer, so, your children can, hold you in their arms, longer, so I can, be a daughter, with a father still?

After a full month in the hospice, I took dad home.  In the company of his children and grandchildren, without those tubes going in and out of his body that made his life even harder, he’d gained, an, extra month, two days after Father’s Day, he’d selected to, fall, into, that eternal, sleep, and thus, our, scents of, missing him, started, rooting downward.

So this would be, one of the, hardest decisions that someone is forced to make, to save the loved ones or to just, let them go, I mean, there’s, a lot to, consider in the matter, are you, willing to, try your loved ones longer, just so you can have them with you longer, or, would you be willing to, say your, goodbyes to them, and, leaving, no love unsaid, and, just, let them go?

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That Day, Unknown

On watching her husband, suffer, with his terminal illness, waiting, for death to come and, claim him, translated…

That day, my husband was, wheeled into the treatment room, had a “smooth ride” of his cancer treatment processes, no loss of hair, no losing all his weight, he’d only, complained of aches and pains more often, and as the primary treating physician visited his ward, he’d only, begged him for more pain meds, but, after the pains subsided, another sort of illness, took him over.

One afternoon, I’d, rushed off to the hospital, it was the call of the caretaker from the bed next to his.  I’d never seen him like this before, lips trembling continually, kept apologizing repeatedly, I’m sorry, I’m, sorry, the group of doctors hovered over his bed, and started discussing, and because my husband was in and out of comas, and started calling aloud things that don’t make sense, fearing that it might affect the other patients who shared the same room as he, they’d decided to wheel him into the treatment room.

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as he’d, become like this…photo from online

And after that we’d, taken, that downhill slope toward, the bottom, he could laugh and chat at first, but, with his getting diagnosed with acute pneumonia, he had an intubation, and because of how the hospital worried that he might hurt himself, they’d, restrained him with the cloth bands to his bed, and his elbows now, bruised up, with the days that came and went, his skins ulcered.  Every day, he’d slept, waken up, waken up, and slept, and can only, stare at the ceilings, as he’d come home from work from before, he’d, ranted, incessantly on what went on during his work day, he can, no longer speak a single word now, and it must be, too, trying for him.

At first, my husband mapped out his, recovery plan, placed it at the bottom of his, desk drawer, he had a strong will to survive then, was optimistic on this path to, defeat cancer, and yet, months passed by, the life and death that came and went in the hospital wards, the elderly who was still there on the next bed, got wheeled out with a white cloth covering the bed today, my husband also, transferred from the normal wards, into the I.C.U., and connected to the machines to live now.

Once, I’d, gotten closed to his ears, told him, “if you still want to live, nod”.  And it wasn’t, as I’d expected, a nod, he’d shaken his head then, for a very, very, long time, with the tears that stained up a huge chunk of his, pillow.  While I, too selfish, can only, struggle within my own self, after I’d made up my mind, I’d still, tried to keep the moments of visiting him in the hospital afterwork, again, and again, and again, hour by hour, and, begged for that, unknown day, to finally, come.

And so, this, is how difficult it is, to watch someone you love very dearly, get tortured by his, illness, and, at the start he had this strong will to survive, thought he was going to, overcome, but, as time went by, he grew weaker, sicker, and now, he can only, lie in his hospital bed, and wait for death, and there’s, nothing you CAN do for him, save for, sign that DNR on his, behalf now.

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She Had Pulled the Plug on Father, & Readied Herself to Serve the Time in Prison Back Then

The choice, to decide how we will, leave this world, it’s, an important one, signing the DNR, lessons that life have to, offer, off of the Front Page Sections, translated…

“The Right of the Patients’ Selves” was signed last January, and Taiwan marches, one step toward “dying easily”.  The honorary professor of the Changgong University Medical School, Chiao recalled her own caretaking experiences from forty-two years ago, how she had, prepared herself for being charged with “murder”, pulled the plug on her own father.  And now, she’s a terminal cancer patient herself, and set up her own DNR, and planned to “leave the world naturally”.

Her father was a retired army general, gone to war, she clearly remembered her father’s beliefs about life, not going against what’s natural, not forcing life along.

instead of this…

查看來源圖片
photo from online

Chiao told, that at age seventy-three, her father started having memory issues, but they couldn’t find a reason, they’d not known it was dementia, her father and older brother lived in Taoyuan, one day her father disaprpeared, and seven days later, the police called, told the families that her father had, wandered to Yilan, which was, over hundreds of kilometers away, covered in his own urine and fecal matter, and he couldn’t tell them how he got there, what he had for food, or where he’d stayed.

At eighty-six, her father had a cold, which caused pneumonia, and sepsis too, he was hospitalized, Chiao told, that there were tubes connected to her father’s body, with the tracheal tubes as well, the doctor was about to place her father on life support, she’d discussed the matter with her older siblings, and, decided to honor the way their father lived, and signed the DNR.

Chiao graduated from the nursing department of N.T.U., back when she was only thirty, she’d stated the wish for all of her family members, the doctor replied back coldly, “How can you all be such unfitting children, how can you let your father die?”, seeing how the doctor wouldn’t do it, the families asked Chiao to pull the plugs.  For this, she’d read at the medical libraries of N.T.U. for an entire week on the ethics of medical treatment, and proved that her and her families had, made the right decisions.  She said, her father’s heart, liver, lungs, and kidneys had all failed, if he were still conscious, he would certainly, NOT allowed so many tubes to get him plugged in, besides, his weight reduced to twenty-seven kilograms, nothing but skins and bones left, unless there’s a way to transplant all the vital organs in his body, there’s no way to save him, there’s no reason to, prolong his, sufferings.

wouldn’t you rather have…

flatline 的圖片結果
rather than prolonging the sufferings of someone you love and cared about? Photo from online

“The medical staff members started whispering, said that I was, murdering my own father.”  Chiao took her clothes, a bible, readied herself for prison after she’d pulled her own father’s, plugs.  Before she’d taken her father off life support, the treating physician demanded that she wrote on her father’s medical records, “The daughter, Ko-Shih Chiao pulled the tracheal tubes herself”, and noted the year, the month, the day, the hour, and the second when it was done.

“After the tubes were pulled, my father took a deep inhale, I was so scared, called in all my family”, the family stayed by the father’s side, until he passed away in peace.  Chiao believed she’d made the right decisions, but still struggled with the decisions long.  As she worked as the assistant head nurse at VMH in Taipei, she’d had eight terminally ill patients who were tried by their conditions in her two years of working there, and they’d, taken their own lives, it’d pained her even more.

She was diagnosed with breast cancer at age fifty-eight, and it’d relapsed, she was on the target drugs.  As the legislation of “Patient right” came last year, she’d set up her medical will, “if I can’t be cured, and there’s a lot of pains that come, then, I shall, die naturally, no need to prolong my own, suffering.”, awhile ago she broke her leg, the doctor said if she get it surgically corrected, it will be healed in just one month, otherwise, she’s going to wait for three, four months for it to heal up on its own; she’d assessed, that the drugs she was taking for cancer was causing her white blood cell count to drop, that it wasn’t fit for her to go under the knife, and decided to let time take its course, and if it doesn’t heal properly, it’s the way it’s intended to be.

And so, because of her work, she’d seen a ton of people at the terminal stages of life, and realized how important it is, for the ailing to make ones’ own choices to whether or not to get resuscitated, and, she’d, honored her own father’s wish, despite HOW the outside world perceived her, and she’s, made the most important medical decision of her own life herself too.

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Because of Your Not Ready to Let Me Go, I Had to, Suffer, Longer than I Had to…

tattooed, around the area where the tube is, supposed to, go in…photo from online

I’d been found, in the TERMINAL stage of cancer, it’d, progressed too advance, metastasized, took over, my other organs as well, but because of your not ready to let me go, I had to, suffer, longer than I had to.

I get, that you love me, and couldn’t see me die, but heck, EVERYBODY dies, I’d, already, come to understand that, through the course, of this, illness, and, as my cancer had, progressed, little, by little each and every day, I’d, become, less than all I once was, I’d lost, ALL my dignities, I’d started, wearing DIAPERS for crying on loud, and needed people, to carry me up and down, and I can’t even, sit STRAIGHT, in my god damn, WHEELCHAIR either!

Despite everything that’s been done, my cancer is still “on”, in fact, it’s, MORE than on, and, this last round of chemo, it’d, left me, so FUCKING weak, I can’t even see anything in front of my eyes now.

查看來源圖片the forms…photo from online

Is this the way, I want to live? HELL no! And yet, you’re, still, keeping me here, but W-H-Y, huh? Why do you, HATE me so, that you feel compelled, to DRAG me through this SHIT in these dying days of mine? And, why can’t I, just, have some peace, and just, live from breath to breath?

I’m NOT afraid to D-I-E, by any measures, in fact, I wish I were DEAD now, and yet, look at, these tubes that are, attached to my body, there’s one, to drain out the excess fluids, one that’s, in my arms, to draw the blood out for testing’s sake, and oh, do you not see, this tube that’s, stuck down MY fucking throat here? And, don’t EVEN, get ME started, on what feeding time is like every single time here???

Now, ask yourselves this: would THIS be the way, you all want to, live out the rest of your lives? And, if you could have a choice, wouldn’t you, just, want someone, to PULL the P-L-U-G-S?

So, why are you, still, keeping your own loved ones, connected to that monitor, beeping, beeping, beeping, beeping, beeping, and beeping away, huh?

This is, completely, I-N-H-U-M-A-N-E, and NOBODY deserves to, LIVE like this, especially, NOT during those, final days, years, months of her/his, life………

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Bowie Tseng Witnessed Life & Death Firsthand, “Leaving is What He Wanted to Do the Most”

The interviews with those considering euthanasia, whose been in ailing health conditions, from the Entertainment Sections, translated…

Bowie Tseng in Basel, Switzerland, witnessed the 104-year-old Australian biologist, Goodall, ending his own life by euthanasia, in the final three days of his life, she’d stayed with him, ate with him, held conversations, in that final moment, she was, filled with ambiguity inside, “in just one hour, he will be gone, and I’d messed up the time he should be spending with him family, because of work, until he’d finally asked those around him, ‘what are we waiting for?’, the employees of the clinic told him, ‘there are still forms we need to fill out’, he’d sighed, ‘there are always forms to be filled out’, at that moment, I’d, let go, I shouldn’t use my own sorrows, to interpret him leaving the world happy, that’s what he wanted to do the most, as a bystander, we should, give him our blessings.”

獨家/親眼目睹百歲生態學家安樂死 曾寶儀:巨大震撼!photo fo Bowie Tseng interviewing the elderly man in Switzerland, from UDN.com…

Bowie Tseng took the documentary filming, in the past few months, she’d trekked to Great Britain, Switzerland, the Netherlands, and Ireland, to interview those who’d lost their loved ones by euthanasia, and in February, she’d also, interviewed the activist for euthanasia in Taiwan, Dar-Jen Fu, “he’s weak, needed morphine to stay alive, in the interview sessions, he was still full of responsibilities, claimed the purpose of his wanting his own death.” And, before she set foot to go to Switzerland, she’d thought of a million questions to ask Goodall, the biggest shock for her, “I’d never interviewed anybody who’d determined her/his own date of death, how do I go about approaching him, how do I ask my question, to not be offensive toward him, how do I, say goodbye.”

Bowie Tseng said, “He’s older than I imagined him to be, I’d held onto the oldest hands I’d ever shaken, with the years on them, wrinkles, spots, and because of muscular atrophy, the joints were very apparent, but he was still very strong. I’d gone with him and his family to the botanic gardens for a stroll, he’d petted the plants along the way, I’d asked him if he was saying goodbye to them all, and he’d asked me, ‘why would I?’, at that very moment, I’d found, all the questions I’d wanted to ask him to lose meaning, because he doesn’t care anymore.”

There’d been war between the pro and anti euthanasia groups, Bowie interviewed a British elderly woman, who was born with severe handicap, and in the entire interview, she’d needed the respirator connect to her, and every fifteen minutes, the nurse had needed to help get the phlegm out of her lungs, but because of her optimism toward life, and her two marriages, despite how bad her conditions for staying alive was, she’d spoken up against euthanasia, and her speech had helped altered British law, and, gotten the parliament to vote against euthanasia. And BBC filmed the life of “Simon”, the businessman who had ALS, who’d not progressed to the point when euthanasia should be a consideration for him, he was accompanied by his own wife, to have it, as the footages come out into the open, it’d shaken up the entire world. Bowie Tseng said, “I’d interviewed his wife this time, and she’d told me she was regrettable for doing this, she believed, that death is not the business of the individual, although you may be ill, but you still don’t have the rights, to take away the time your family gets to spend with you.”

something used, to show that you don’t want to be resuscitated, photo from online…

After this experience, Bowie Tseng said, “I will work hard, to cherish my life every day, every gathering with friends, every meal, I will work hard, to make all of this meaningful.”

And so, because this woman was personally interacting with these individuals who are in the process of getting euthanized, it’d impacted her, on a personal level, and, she’d bore witness to how bad someone was living, and yet, still was against euthanasia, this is probably going to be, the most memorable experience of interview that this woman will ever have in her entire life.

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Wanting to Grow Old with Children Accompanying

The trials someone faces toward the end of a loved one’s life, translated…

“We’d all wanted to hold our children’s hands, to watch them get older, but unfortunately, fate had other plans………” as Shu-Mei talked, she’d started, sobbing. She’d shared with the patients and the families, her own experiences, “Do we, or don’t we resuscitate?”, that is the final questions, that a lot of the terminally ill patients will face, it’s also, a heart wrenching memory for Shu-Mei, her husband had been gone sixteen years now, and yet, that intense heartache had, stayed.

Her husband was diagnosed with a rare condition when he was forty-six, he’d become bedridden for over a decade, and, couldn’t control anything, he’d already, become so discouraged, to the end, when he was on the respirators, he’d still had difficulties breathing, the doctor said, that only a tracheotomy can save his life, and, her husband wanted to die, and they’d, turned down the doctor’s offers, but, as their daughter came to see him with her five-month-old son, it’d, sparked his will to live again.

The doctor saw how he was hesitant, gave them three weeks to think about it, during which time, Shu-Mei lost a lot of weight, the whole family was living under this, dark cloud. If they’d decided to put him on a respirator, the patient will be living, off of the respirators; if they don’t, then, very shortly thereafter, he would die, he will, NEVER see her husband again. Shu-Mei was confused on what she should do, her husband asked her, “Do you want me to die?” She’d naturally not be willing to let him go, started crying, and became, silent, and respected whatever he’d, decided. It’s just, that during these years counting down toward death, he’d always worn his frowns, and, gotten stuck between life and death, don’t’ know if he’d, regretted it?

圖/豆寶illustration from the papers…

“Back then, the medication had yet to pass the coverage of the health insurance plans, it was very expensive, there were the expandable items of phlegm tubes, the diapers, the feeding tubes, the caretaker’s fees………”, Shu-Mei told me, even as her whole family started saving up, it wouldn’t be possible for them, to pay for his care, she’d needed to work days and nights, and his daughter part-time through school, and they’d needed monetary assistance from their families, friends, relatives every now and then too. For the years, the medical bills, she’d, stuffed them all inside a drawer, and after her husband passed, she’d started, sorting through them, and, the amount exceeded five million dollars, she could bought a house with the money saved up. “Although taking him off life support only took a total of fifteen minutes, but there’s, such a high price for it, and, as life continued, and the patient had, suffered, it’d also, put the loved ones under great duress.” Shu-Mei told me, the pain, got in too deep, into her heart, that it’d, slowly, suffocated her.

A woman in the support group, whose husband was ill, started, sobbing after she’d heard, she said that they’re currently, facing this difficult choice, especially that they didn’t have enough money saved up, and she worried that she’s not as strong as Shu-Mei had been. Another woman looked worried, that her husband just had an intubation, at the age of thirty-something, he’d, fallen very ill, her mother-in-law loved this youngest son the most, and couldn’t stand seeing him die, and even if her son can no longer call her mom, even if he’s kept alive by those machines, she was willing, to keep him alive. It’s just, that the wife found, that her husband, when his own mother wasn’t looking, he’d tried, to disconnect himself from life support, seeing how twisted and in pain her husband’s face became, she said, that there isn’t a day she hadn’t cried.

Shu-Mei patted her gently on the shoulders, and cried with her, “We all want to grow old with our children, having each other with, but, fate wouldn’t allow it”. If it’s already set, then, just live with it, everything shall pass eventually. Shu-Mei consoled with the woman in her support group.

This, is a hard issue to deal, to let go, or to keep hanging on, but, when the patient is suffering so much, it’s only the right thing to do, to unplug her/him off life support, but, a part of you just, wasn’t willing, to let someone you love die, and so, you have to, struggle hard over the matter, and, eventually, you will, realize, that letting the person you loved dearly die is the best choice, because, keeping the person alive, means prolonging their sufferings, and, nobody wants to see their loved ones suffer toward the end.

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Early Death, Their Way, by: J. Hoffman

Early Death, Their Way, by: J. Hoffman

From The New York Times that came with today’s paper…

Tumors had disfigured Ashley Leigh McHale’s features and spread to her organs.  A year ago, AshLeigh, 17, flew from her home in Catoosa, Oklahoma, to the National Institute of Health in Bethesda, Maryland, with thin hope of slowing her melanoma.

A social worker stopped by her hospital room, and they began a conversation that would be inconceivable to most teenagers: If death approached and AshLeigh could no longer speak, what would she want her loved ones to know?

The social worker showed AshLeigh a new planning guide to help critically ill young patients express their preferences for their final days—and afterward.

If visitors arrived when AshLeigh was asleep, did she want to be woken?  What about life support?  Funeral details?  Who should inherit her computer?  Or Bandit, her dachshund?

When she died in July, AshLeigh was at home as she had requested.  Per her instructions, she was laid out for the funeral in her favorite jeans, cowgirls boots and the white shirt she had gotten for Christmas.  Later, the family dined, as AshLeigh had directed, on steak fajitas and corn on the cob.

“I don’t know what I would have done if I’d had to make these decisions during our extreme grief,” said her mother, Ronda McHale.  “But she did it all for me.  Even though she got to where she couldn’t speak, AshLeigh had her say.”

A national push to have end-of-life discussions before a patient is too sick to participate has focused largely on older adults.  Recently, providers have begun approaching teenagers and young adults directly, giving them a voice in these decisions.

“Adolescents are competent enough to discuss their end-of-life preferences,” said Pamela S. Hinds, a contributor on pediatrics for “Dying in America,” a 2014 report by the nonprofit Institute of Medicine.  “Studies show they prefer to be involved and have not been harmed by any such involvement.”

There are no firm estimates of the number of young patients facing life-threatening diseases at any given time.  Cancer, heart disease and congenital deformities together account for an estimated eleven percent of deaths among adolescents in America, about 1,700 per year.  And thousands live with the uncertainty of grave illness.

“If you are one of the children for whom this matters, or one of their parents, this is a huge opportunity,” said Dr. Chris Feudtner, a pediatric palliative care physician and ethicist at the Children’s Hospital of Philadelphia.

But shifting from hushed talks with parents to conversations that include young patients has met some resistance.  Many doctors lack training about how to raise these topics with teenagers.

Yet research shows that avoiding these talks exacerbates the teenage patient’s fear and sense of isolation.

In a 2012 survey examining end-of-life attitude among adolescent patients with H.I.V., fifty-six percent said that not being able to discuss their preferences was “a fate worse than death.”  In a 2013 study, adolescents and parents described such talks as emotionally healing.

Teenage patients can guide, even lead, their medical care, Dr. Freudner said.  Including them in the discussions acknowledges a terrible fact that patients and family members struggle to keep from each other: the likelihood of death.  “Then people can be together, as opposed to be alone,” Dr. Freudner said.  The teenage patient can address intimate topics, including, “the scariest aspects of the human condition—mortality and pain—but also love, friendship and connection.”

Karly Koch, a college student from Muncie, Indiana, has been treated for many serious illnesses, including Stage four lymphoma, all related to a rare genetic immune disorder.  Her older sister, Kelsey, died of the condition at twenty-two.

Last spring, Karly, then nineteen, developed congestive heart failure.  As Karly lay in the intensive care at the National Institute of Health, a psychotherapist approached her mother, Tammy, with the new planning guide.

“Do we talk about dying?” Mrs. Koch recalled wondering.  “Maybe Karly hasn’t thought about it—do we put it in her head?”

“We had already buried a child and had to guess what she wanted,” she continued.  “So we wanted Karly to have a voice.”

Karly’s reaction?  “She said it wasn’t like we were telling her something she didn’t already know,” Mrs. Koch said.

The guide used by Karly Koch and AshLeigh McHale is called “Voicing My Choices.”  It is the first guide created for adolescent and young adult patients.

The intention was to create a way for them “to make choices about what nurtures, protects and affirms their remaining life and how they wish to be remembered,” said Lori Wiener, a principal investigator on the research that led to the planning guides.

In straightforward language, the guide offers young patients check boxes for medical decisions like pain management.  Another section asks about comfort.  Favorite foods?  Music?  What gives you strength of joy, the guide asks.  What do you wish to be forgiven for?

By offering young patients opportunities to write farewell letters, donate their bodies to research and create rituals for remembering them, the planning guide allays one of their greatest fears: They are too young to leave a meaningful legacy.

Last July, Karly Koch had an experimental bone marrow transplant.  With twelve medications a day and a surgical mask, she is out and about in Muncie.  Karly takes classes to become a physical therapy assistant.  She delights in “normal people” activities.

Her parents keep Karly’s copy of “Voicing My Choices” in their bedroom cabinet.  “It isn’t gloomy to go through,” Karly said.  “It’s kind of fun to get your feelings out there.”

“Now looking at it,” she continued, “I think I’d like to add some things.”

So, this, is a way, of helping young people who are diagnosed with terminal illnesses cope with their own final affairs, and, it’s a great thought, because it will give the families some comfort, knowing that their offspring had the chance, of voicing their opinions on how they wanted to go, and it gives respects to the terminally ill, and shows respect toward life too.

 

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