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        The Hidden Power of Palliative Care姑息關(guān)懷的潛在力量

        2023-04-16 18:55:10薩欽·H.賈殷商裴裴/譯
        英語(yǔ)世界 2023年4期
        關(guān)鍵詞:利茲姑息蘇珊

        薩欽·H. 賈殷 商裴裴/譯

        Susan is 98 years old. Shes been diagnosed with hypertension and memory loss. She experiences frequent pain spells and, like many people her age, shes at risk of falling, especially when she becomes tired. Five years ago, Susan fell, fractured her pelvis and spent an unhappy month in a skilled nursing facility. Physicians like myself often see patients like Susan in hospitals across the country. Typically, we treat them and send them on their way. And just as typically, patients like Susan often reappear in the hospital, either with new ailments or when the old ones show up again.

        蘇珊,98歲,患有高血壓并表現(xiàn)出記憶喪失。她經(jīng)常突發(fā)疼痛,而且與很多同齡人一樣,她容易跌倒,疲勞時(shí)更是如此。五年前,因摔倒造成骨盆骨折,蘇珊在專業(yè)護(hù)理機(jī)構(gòu)住了一個(gè)月,那一個(gè)月過(guò)得可不舒服。像我這樣的醫(yī)生經(jīng)常在全國(guó)各地的醫(yī)院里碰到像蘇珊這樣的病人。通常情況下,我們救治患者,幫助他們康復(fù)回家。可像蘇珊這樣的患者經(jīng)常會(huì)因?yàn)榛忌闲虏』蚺f病復(fù)發(fā)再次來(lái)到醫(yī)院,這種情況同樣時(shí)有發(fā)生。

        But not Susan. She has not been inside a hospital in more than a year. In fact, these days youll find her drinking coffee with her daughter in the comfort of her San Fernando Valley home, completely unaware that she represents the future of palliative care.

        但蘇珊沒(méi)有。她已經(jīng)一年多沒(méi)進(jìn)過(guò)醫(yī)院了。如今,你會(huì)發(fā)現(xiàn)她在圣費(fèi)爾南多谷舒適的家里和女兒喝咖啡,完全沒(méi)有意識(shí)到自己代表的正是姑息關(guān)懷的未來(lái)。

        When I was a medical student, I believed in the infinite power of medical interventions to save lives. Lately, however, my thoughts have changed somewhat. As I watch my patients, my parents, and some of my close friends age, Ive begun to think that, when it comes to people nearing the end of their lives, perhaps we put too much emphasis on curing diseases—and not enough on humanely helping our patients accept their diagnoses, counseling them on how to find enjoyment in their remaining days, and providing them with the knowledge they need to make informed end-of-life care decisions.

        讀醫(yī)期間,我堅(jiān)信醫(yī)療手段擁有無(wú)窮力量,能挽救生命。最近,我的想法卻略有改變??粗业幕颊?、父母,還有幾個(gè)好友漸漸老去,我開(kāi)始思考,對(duì)即將走到人生盡頭的人,我們可能過(guò)于強(qiáng)調(diào)怎么治好疾病,卻不夠重視人道主義關(guān)懷,比如幫助患者接受診斷結(jié)果,就如何樂(lè)享余生提供建議,并告知他們所需信息,以便他們?cè)谥榈那疤嵯逻x擇臨終護(hù)理。

        Truth be told, if you look back at the history of medicine, the profession was always more concerned with symptom management than curing disease. Hippocrates is known as the “father of medicine,” but perhaps a better title for him would be the “father of palliative care.” Though his belief in balancing the bodys four “humors1” was off the mark2, he nevertheless understood the primal importance of comforting patients by alleviating their symptoms, which in his case usually involved the use of herbal medicines.

        說(shuō)實(shí)話,如果你回顧一下醫(yī)學(xué)發(fā)展史,就會(huì)發(fā)現(xiàn)這個(gè)行業(yè)一向更關(guān)注管理癥狀,而非治愈疾病。希波克拉底,人稱“醫(yī)學(xué)之父”,但也許更恰當(dāng)?shù)姆Q謂是“姑息關(guān)懷之父”。他認(rèn)為人體應(yīng)該維持四種“體液”的平衡,雖然說(shuō)得不夠準(zhǔn)確,但他清楚地知道通過(guò)緩和癥狀來(lái)安撫病患至關(guān)重要,他本人就常常使用草藥來(lái)緩和病人的癥狀。

        In the modern world, our focus has shifted primarily to curative medicine. In many cases, this is the correct approach. From plague to heart disease to many forms of cancer to cystic fibrosis, we can now cure an astonishing array of illnesses, allowing people to live longer, healthier lives than ever before.

        到了現(xiàn)代社會(huì),我們基本已經(jīng)把注意力轉(zhuǎn)向了治療醫(yī)學(xué)。在許多情況下,這是正確的做法?,F(xiàn)在,我們能夠治愈一系列疾病,包括瘟疫、心臟病、多種癌癥、囊性纖維化,可治愈的種類之多,令人驚嘆,人們也因此比以往任何時(shí)候都更長(zhǎng)壽、更健康。

        And yet, for many seniors, no medicine or treatment of any kind can effectively stave off3 the inevitable. TV shows about hospitals have burned images into our brains of heroic doctors helping their patients outwit death. But in reality, it rarely works this way. As seniors age and experience deteri-orating health, many bounce in and out of emergency departments, general and geriatric wards, and intensive care units. The time they spend in hospitals, hooked up to a myriad of tubes and subjected to a litany of tests, is rarely pleasant for them or their families—or even in accordance with their wishes. Eighty percent of Americans say they would like to die at home. And yet, about 60% of Americans ultimately pass away in hospitals, with 20% spending their final days in an ICU.

        然而,對(duì)很多老人來(lái)說(shuō),該來(lái)的遲早會(huì)來(lái),任何藥物或治療手段都回天無(wú)力。以醫(yī)院為題材的電視劇里,醫(yī)生幫助病人戰(zhàn)勝死亡,這種英雄形象深深地印刻在我們的腦海里??稍诂F(xiàn)實(shí)中,這樣的場(chǎng)景極其少見(jiàn)。隨著年歲漸長(zhǎng),身體每況愈下,很多老人會(huì)頻繁出入急診室、普通病房、老年病房和重癥監(jiān)護(hù)室。他們?cè)卺t(yī)院里插上一大堆管子,忍受一連串檢查,無(wú)論對(duì)他們還是他們的家屬而言都極不舒服,甚至不符合他們的意愿。80%的美國(guó)人表示希望死在家里??墒牵s60%的美國(guó)人最終在醫(yī)院離世,其中有20%在重癥監(jiān)護(hù)室里走完了人生的最后時(shí)光。

        This presents a problem not just for patients and their families, but for the health system as a whole. One-quarter of Medicare spending goes toward caring for people in their final year of life. Moreover, a study of family members of patients who died from cancer found that only half felt their loved one had received excellent end-of-life care. Altogether, this suggests that we as a whole are directing valuable health care resources toward hospital-based end-of-life care that few people want—and that many people say is inadequate.

        這給病人及其家屬,乃至整個(gè)醫(yī)療體系帶來(lái)一個(gè)難題。美國(guó)國(guó)家老年人醫(yī)療保險(xiǎn)25%的支出都用在了病人臨終前一年的護(hù)理上。此外,針對(duì)已離世癌癥病人的家屬,一項(xiàng)研究發(fā)現(xiàn)僅半數(shù)認(rèn)為他們的摯親得到了優(yōu)質(zhì)的臨終關(guān)懷??傊?,這表明我們整個(gè)社會(huì)都在將寶貴的醫(yī)療衛(wèi)生資源投入到以醫(yī)院為依托的臨終護(hù)理,可是幾乎沒(méi)有人想要這種護(hù)理,而且很多人也說(shuō)這種護(hù)理不夠好。

        But there is an alternative. Physicians could put less emphasis on trying to cure late-stage illnesses in hospital settings and instead focus on the avoidance of suffering, and helping our patients make informed decisions about how they want to spend their final days. This, in a nutshell, is the goal of quality palliative care. Unfortunately, palliative care has often been seen as a hospital-based transition to hospice care. But an increasing body of evidence suggests that, when provided in the patients home, good palliative care can lead people to live a high-quality end-of-life.

        其實(shí)還有一個(gè)選擇。醫(yī)生可以少關(guān)注怎樣在醫(yī)院里治好晚期疾病,而把重點(diǎn)放在如何避免痛苦,以及幫助病人就自己想怎樣走完最后的日子作出知情決策。簡(jiǎn)單來(lái)說(shuō),這就是高質(zhì)量姑息關(guān)懷的目標(biāo)??上В藗兺J(rèn)為姑息關(guān)懷依托于醫(yī)院,是病人轉(zhuǎn)向臨終關(guān)懷的過(guò)渡階段。但越來(lái)越多的證據(jù)表明,如果在家接受優(yōu)質(zhì)的姑息關(guān)懷,患者便可擁有高質(zhì)量的臨終生活。

        Which brings us back to Susan. Shes a patient of Aspire Health, a company I lead. Under Aspires care model, people like Susan receive home-based care from a specialized team of clinicians whose goals are to provide their patients with quality medical care, keep them out of the hospital, and offer them counsel in their final years. Seventy-one percent of Aspire patients engage in advance care planning4 discussions, allowing them and their families to make informed choices before they end up in the hospital, connected to tubes.

        讓我們回過(guò)頭再看看蘇珊的故事。她是由我領(lǐng)導(dǎo)的阿斯皮爾健康公司的患者。在阿斯皮爾的護(hù)理模式下,像蘇珊這樣的病人可以獲得來(lái)自專業(yè)醫(yī)生團(tuán)隊(duì)的居家護(hù)理。他們旨在為患者提供優(yōu)質(zhì)的醫(yī)療護(hù)理,避免患者出入醫(yī)院,在患者生命的最后幾年里提供咨詢服務(wù)。阿斯皮爾71%的患者可以參與預(yù)先護(hù)理計(jì)劃的討論,在全身插著管子躺在醫(yī)院之前,他們得以和家人共同作出知情決策。

        On a recent afternoon, Susan sat at her kitchen table with her daughter, Jenny, and Liz Garcia, an Aspire nurse practitioner who visits Susan in her home every four to six weeks. Susan sipped coffee, nibbled a muffin and gazed at the view of the valley while Liz took her blood pressure. Nearby, Rufus, Susans dog, slept in the sun. Susan told Liz that she fell the night before, so she checked her legs for signs of bruising and offered to connect her with a service to evaluate her home for safety. “The goal is for you to be here at home, to be taken care of,” Liz explained.

        前幾天的一個(gè)下午,蘇珊和女兒珍妮坐在餐桌前,和她們?cè)谝黄鸬倪€有阿斯皮爾的執(zhí)業(yè)護(hù)師利茲·加西亞,她每四到六周會(huì)去蘇珊家里探望。利茲給蘇珊量血壓的時(shí)候,蘇珊一邊小口喝著咖啡、吃著松餅,一邊凝視著山谷的風(fēng)光。旁邊,蘇珊的狗魯弗斯正躺在陽(yáng)光下睡大覺(jué)。蘇珊告訴利茲,自己昨晚摔倒了,于是利茲?rùn)z查她的雙腿,看看有沒(méi)有淤青。利茲還主動(dòng)提出要為蘇珊聯(lián)系家庭安全狀況評(píng)估服務(wù)?!拔覀兊哪繕?biāo)就是讓你居家生活、有人照護(hù)。”利茲說(shuō)。

        Care models like Aspires not only provide patients like Susan with a dignified experience, they reduce costs. Aspire patients are two-thirds less likely than other people to experience expensive hospitalizations, which results in significant cost savings.

        類似阿斯皮爾這樣的護(hù)理模式不僅讓蘇珊這樣的患者感覺(jué)活得體面,還為他們節(jié)約了開(kāi)支。阿斯皮爾的患者需要花大錢住院的可能性減少了三分之二,這大大降低了費(fèi)用。

        Of course, I recognize that theres a tension here. Our job as physicians, I believe, is to offer our patients hope. Nevertheless, that isnt our only job. It is also incumbent upon us to be honest comforters, to help our patients avoid suffering, and to have difficult discussions with them about the most delicate of subjects.

        當(dāng)然,我清楚這份工作存在一個(gè)矛盾。作為醫(yī)生,我相信我們要給患者帶去希望。可是,這不是我們唯一的職責(zé)。我們也有責(zé)任坦誠(chéng)地寬慰病人,幫助他們避免痛苦,并與他們就最敏感的話題進(jìn)行艱難的討論。

        After Liz updated Susans medical record, she closed her laptop and got up to leave. But first, Susan wanted to show her the two Oscars her late husband won for set design. As Liz held the gold statuettes, Susan pointed out the Christmas tree she keeps year-round in the living room to remind her of her husband, who loved Christmas and died in late December. “Hes still with me,” Susan said adding, “I have my dog. I have my view. And I have my neighbors. Im happy to be home.”

        利茲更新完蘇珊的病歷,合上筆記本電腦,起身準(zhǔn)備離開(kāi)。臨走前,蘇珊想給她看看丈夫生前憑借布景設(shè)計(jì)獲得的兩座奧斯卡獎(jiǎng)杯。正當(dāng)利茲拿起小金人獎(jiǎng)杯,蘇珊說(shuō)客廳里的那棵圣誕樹(shù)放了整整一年,為的就是能讓她時(shí)常想起自己的丈夫。她丈夫喜歡圣誕節(jié),又死于12月底?!八€在我身邊?!碧K珊接著說(shuō),“我還有狗,還有風(fēng)景,還有鄰居。住在家里真好!”

        (譯者為“《英語(yǔ)世界》杯”翻譯大賽獲獎(jiǎng)?wù)撸?/p>

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