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Books and Arts; Book Review;Terminal care;
Go gentle into that good night;
The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life. By Ira Byock.
Asked where they would like to spend their last days, Americans almost always say at home, surrounded by people they love. In real life, though, only one in five achieves that. More than 30% die in a nursing home, where almost no one wants to be, and over half end up in a hospital, often in an intensive-care unit, heavily sedated and attached to life-saving equipment until their doctors give up the battle.
對大多數美國人來說，倘若最后的時光能在家中度過，周圍環繞著摯愛親朋，便是走也能走得稱心了。然而，只有五分之一的人能實現這個愿望。誰也不想去療養院，可卻有超過三成的人死在那里；另外有超過半數的人死在醫院的重癥監護室里，身上注射了大量鎮定劑，連接在生命維持設備上，直到醫生宣布投降。
Death is a difficult subject for anyone, but Americans want to talk about it less than most. They have a cultural expectation that whatever may be wrong with them, it can be fixed with the right treatment, and if the first doctor does not offer it they may seek a second, third or fourth opinion. Litigation is a constant threat, so even if a patient is very ill and likely to die, doctors and hospitals will still persist with aggressive treatment, paid for by the insurer or, for the elderly, by Medicare. That is one reason why America spends 18% of its GDP on health care, the highest proportion in the world.
死亡對所有人來說都是個難題，相比之下美國人卻很少談起死亡。在他們的文化里，大家都覺得不管生了什么病，只要醫治得當就能安然無恙；如果一個醫生不行，他們就會去找第二個，第三個，第四個……他們還常常威脅著要起訴醫生，所以就算有人病入膏肓，行將就木，醫院和醫生也會堅持實施高強度治療，反正年輕人有保險公司付賬，老人也有醫療保險撐腰。所以，美國的醫療支出占GDP的18%，高居全球之首。
That does not mean that Americans are getting the world's best health care. For the past 20 years doctors at the Dartmouth Institute for Health Policy and Clinical Practice in New Hampshire have been compiling the “Dartmouth Atlas of Health Care”, using Medicare data to compare health-spending patterns in different regions and institutions. They find that average costs per patient during the last two years of life (when health spending is heaviest) in some regions can be almost twice as high as in others, yet patients in the high-spending areas do not survive any longer or enjoy better health as a result.
花了最多的錢，未必就能得到最好的衛生保健服務。20年來，新罕布什爾州達特茅斯衛生政策與臨床實踐學院一直在編纂《達特茅斯衛生保健地圖冊》。該學院使用醫保數據，比較了不同的地區和醫療機構衛生保健支出之間的差異。研究者發現，雖然在生命最后兩年中（醫療支出最大），有些地區病人的平均支出可達其它地區的兩倍，但是他們的壽命沒有延長，健康狀況也不比其它地方好。
Ira Byock is the director of palliative medicine at Dartmouth-Hitchcock Medical Centre and a professor at Dartmouth Medical School. His book is a plea for those near the end of their life to be treated more like individuals and less like medical cases on which all available technology must be let loose. With two decades' experience in the field, he makes a good case for sometimes leaving well alone and helping people to die gently if that is what they want.
Ira Byock是美國達特茅斯希契科克醫療中心的姑息療法主管，也是達特茅斯醫學院教授。他在書中懇請人們把那些生命盡頭的人當做“人”來看待，別把他們當成冷冰冰的醫療個案，也別把他們當成各種醫療措施的跑馬場。Ira Byock從業已有二十載，在書中為姑息療法做了強有力的辯護。如果人們只想走得安詳些，便不應該徒生枝節，而應該幫助他們滿足心愿。
That does not include assisted suicide, which he opposes. But it does include providing enough pain relief to make patients comfortable, co-ordinating their treatment among the different specialists, keeping them informed, having enough staff on hand to see to their needs, making arrangements for them to be cared for at home where possible—and not officiously keeping them alive when there is no hope.
但是要滿足病人的心愿，并不意味著幫助他們自殺，Ira Byock也反對自殺。相反，姑息療法應該為遭受劇痛折磨的病人緩解痛苦，與其它醫療專家協同合作治療病人，讓病人了解治療情況，保證有充足的人手為病人服務，還盡可能為病人提供上門服務。當大限到來之時，也不將病人強留于世。
This is slippery territory. The Medicare Hospice Benefit act, passed by Congress 30 years ago, offers palliative care to those expected to die within six months, but requires that once they take it up, treatment for their condition must stop. That puts many patients off. And when they hear “palliative care” and “hospice”, their usual reaction is, “I'm not that far gone yet.” Yet hospice patients typically last only two or three weeks. As Dr Byock says, this has become “brink-of-death care”.
姑息療法處境尷尬。美國國會30年前通過了《臨終關懷醫療保障法案》，為那些預期壽命只有6個月的病人提供姑息療法。但是根據該法案，病人一旦選擇了姑息療法，就不得再接受對其病癥的治療，使得許多病人望而卻步。而且人們聽到“姑息療法”或者“臨終關懷”，總會覺得：“我的情況還沒有那么糟吧。”所以，大多數接受臨終關懷的病人往往只能生存兩到三周。正如Byock所說，這成了“死亡邊緣的關懷”。
Nor is it easy to decide when to stop making every effort to save someone's life and allow them to die gently. The book quotes the case of one HIV-positive young man who was acutely ill with multiple infections. He spent over four months in hospital, much of the time on a ventilator, and had countless tests, scans and other interventions. The total bill came to over $1m. He came close to death many times, but eventually pulled through and has now returned to a normal life. It is an uplifting story, but such an outcome is very rare.
究竟何時可以不再盡一切努力挽救病人的生命，而是放手讓他們從容走向死亡？很難判斷。書中便舉出了一個例子：從前，有一位青年身患艾滋病，病情危重，并發多種感染。他在醫院里度過了四個月，大多數時間都連在呼吸機上，做了許多次檢測、掃描和其它干預治療，最后醫療總賬單超過了100萬美元之巨。他曾一次次瀕臨死亡，最終卻挺了過來，過上了正常的生活。這是個讓人振奮的故事，但是如此美好的結局很少出現。
Dr Byock's writing style is not everybody's cup of tea. The patients' personal stories are told in minute detail, leaving the reader gagging at the degree of physical and psychological suffering that is most people's lot towards the end of their lives. And the author gets rather messianic, advocating a more caring society that shows no sign of materialising. But he is surely right to suggest better management of a problem that can only get worse. As life expectancy keeps on rising, so will the proportion of old people in the population. And with 75m American baby-boomers now on the threshold of retirement, there is a limit to what the country can afford to spend to keep them going on and on.
Byock博士的寫作風格可能不會合所有人的胃口。他把病人的故事事無巨細地一一寫出，讓讀者對多數人死亡前將要面對的心理和生理折磨感到窒息。作者也有些以救世主自居，在書里宣揚一個不太可能出現的更有愛心的社會。不過，他說要妥善處理一個必將越來越嚴重的問題，這是對的：隨著預期壽命不斷提高，老年人口的比重也會越來越大。如今，美國嬰兒潮中出生的7500萬人即將退休，國家財力有限，無法在生命的路途中將他們送上一程一程又一程。
