JAMA子刊:臨終家庭護理——需要多少?

人口研究將繼續在政策和服務規劃中發揮重要作用,以確保我們的醫療保健系統能夠滿足日益增長的臨終關懷需求,並且可以做一些工作來優化我們的行政和臨床數據集,使其更適合於目的

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We spend a large proportion of our lives in our home environment, so on face value it is a natural assumption to consider dying at home an important goal for quality end-of-life care.1 As the need for care at the end of life grows in the face of an aging population, understanding how best to configure and fund services for people approaching the end of life is increasingly important. It requires consideration of what outcomes we are aiming to achieve and for whom (the patient, their carer, and/or the health system), and whether those who are at the end of their life prioritize these factors similarly.2 In terms of models of care, the challenge is to determine the role, configuration, and optimal timing for in-home services, as well as the proportion of overall services that should be performed in the community. When home is the preferred place of death, in-home services are critical to ensure we can meet this preference while maintaining adequate symptom control and support for both the person themselves and their caregivers.3 Meta-analyses support increased odds of dying at home when adults with advanced illness receive home-based palliative care, with reduced symptom burden.3

The retrospective cohort study from Abe et al4 using claims data from 572 059 decedents in Japan’s long-term care insurance system found the proportion of in-home deaths was higher in those who had used in-home care services at least once prior to their death (14.3%), and that each day increase in the use of in-home care services at the end of life was associated with a 3.6 percentage point increase in the probability of in-home death.4 Older people who died at home were more likely to have a spouse and have lower care needs.4 The use of instrumental variable estimation aimed to account for the expectation that if the older person lived in a municipality with more care workers, they could use in-home services more frequently. It is important to note this study assessed the in-home services provided by care workers to assist with instrumental and activities of daily living, which did not include in-home medical services provided by physicians and nurses (such as palliative care), and focused on services during the narrow time frame of the month prior to death. The authors highlight limitations of population-based approaches. These include the difficulty in classifying the number of unintended home deaths (where a home death was not the preference) and that those who have not received in-home services could potentially have either not needed services or been affected by other factors driving inequity of access, which would lead to an underestimation of the population denominator of older people who may have benefited.

This study highlights the complexity of defining the “exposure” in this context. Most health systems include several elements of in-home care, as identified in this example of Japan’s long-term care system, which includes direct physical and personal care as well as medical and nursing expertise for specific clinical services such as palliative care. It is likely that a combination of these services, delivered when and where they are needed by clinicians and care workers with the required competencies, will be needed to best optimize outcomes, whether this is meeting preferred location of death or other aspects rated important by people at the end of their lives.2

This study also has made an assumption that it is care close to the end of life that influences capacity to meet preferences, but increasingly we are understanding palliative care needs occur much earlier, and that early intervention (including care delivered during hospitalization or in ambulatory care) improves outcomes. As the authors rightly conclude, future work to fully understand how best to meet end-of-life care at a population level will require analysis to assess the impacts of exposure to all elements of in-home care, including clinical services such as palliative care and out-of-hours care, in the local context of availability of other care options at the end of life (eg, hospitalization and institutional care). Similarly, we need to also ensure our models of care are cost-effective,5 and the models are inclusive of those who may be at higher risk of not having their needs met (eg, those without an informal carer or with higher physical needs).

Overall, although this study has demonstrated that in-home care worker services do increase the rate of in-home death, the proportion of deaths at home are at the lower end in comparison with other countries.6 This raises 2 issues. Policymakers need to have a good understanding of epidemiology about preferences for location of care and death,1 and how these may change over the course of an illness, for the population for whom they are developing service models. Similarly, population-based methods to evaluate health services need to use the thresholds based on known preference for location of death within their community to evaluate success. Researchers also need to account for a composite of outcomes, in which case location of care and death is only 1 element. Preference for location of care and/or death is not a simple dichotomous outcome; a number of trade-offs inform these decisions, and clinical experience tells us that the priorities of the person with a life-limiting illness and their carers often present a moving goalpost.1 The preference of location of death at the top of the hierarchy cannot be assumed, with a 2021 study7 using discrete choice methodology to consider preferences for an older person with advanced cancer in the last 3 weeks of life finding that people prioritized patient and carer well-being and symptom control, with less importance placed on location of care and death. Similarly, studies have shown that the home of a relative or family member is not considered an equal alternative to the person’s own home.1 Other studies of home-based palliative care have included a range of outcomes, including physical symptom control, psychological, social, and spiritual well-being, and caregiver outcomes such as burden, mastery, coping, and effects on bereavement.3 Other important elements that patients identify include trust in the treating clinical team, effective communication, and goals around life completion (resolving conflicts and saying goodbye).2

Population studies will continue to play an important role in policy and service planning to ensure our health care systems can meet the growing need for end-of-life care, and there is work that can be done to optimize our administrative and clinical data sets to make these more fit for purpose. However, they will need to be supported by prospective comparative effectiveness studies of models of care evaluating impacts on end-of-life needs and preferences, and optimal cost-effectiveness.

全文翻譯(僅供參考)

我們一生中有很大一部分時間是在家庭環境中度過的,因此從表面上看,將在家死亡視為優質生命末期護理的一個重要目標是很自然的假設。1 隨著人口老齡化對生命末期護理需求的增長,了解如何為接近生命末期的人提供最佳配置和資助服務變得越來越重要。這需要考慮我們的目標是什麼結果,為誰(病人、他們的照顧者和/或衛生系統),以及那些處於生命末期的人是否同樣優先考慮這些因素。2 在護理模式方面,面臨的挑戰是確定居家服務的作用、配置和最佳時機,以及應該在社區進行的整體服務比例。當家庭是首選的死亡地點時,居家服務對於確保我們能夠滿足這一偏好,同時保持足夠的症狀控制和對患者本人及其護理人員的支援至關重要。

Abe等人4利用日本長期護理保險系統中572 059名死者的索賠數據進行的回顧性隊列研究發現,那些在死前至少使用過一次家庭護理服務的人在家中死亡的比例較高(14.3%),而且在生命末期使用家庭護理服務的時間每增加一天,在家中死亡的概率就會增加3.6個百分點。在家死亡的老年人更有可能有一個配偶,並且護理需求較低。4 使用工具變數估計的目的是考慮到如果老年人生活在有更多護理人員的城市,他們可以更頻繁地使用家庭服務的預期。值得注意的是,這項研究評估了護理人員提供的協助工具和日常生活活動的居家服務,其中不包括醫生和護士提供的居家醫療服務(如姑息治療),並側重於死亡前一個月的狹窄時間範圍內的服務。作者強調了基於人口的方法的局限性。其中包括難以對非故意在家死亡的人數進行分類(在家中死亡並不是首選),那些沒有接受居家服務的人有可能不需要服務或受到其他因素的影響,導致可能已經受益的老年人的人口分母被低估了。

這項研究強調了在這種情況下定義 "接觸 "的複雜性。大多數衛生系統包括居家護理的幾個要素,如日本長期護理系統的這個例子中所確定的,包括直接的身體和個人護理,以及特定臨床服務的醫療和護理專業知識,如姑息治療。可能需要將這些服務結合起來,在需要的時候和地點由具備必要能力的臨床醫生和護理人員提供,以達到最佳效果,無論是滿足首選的死亡地點,還是人們在生命末期認為重要的其他方面。

這項研究還做了一個假設,即是接近生命終點的關懷影響了滿足偏好的能力,但我們越來越了解姑息關懷的需求發生得更早,而且早期干預(包括在住院期間或在流動護理中提供的關懷)會改善結果。正如作者正確得出的結論,未來的工作要充分了解如何在人口層面上最好地滿足臨終關懷,就需要進行分析,評估在當地臨終時是否有其他護理選擇(如住院和機構護理)的背景下,接觸到居家護理的所有要素,包括臨床服務,如姑息治療和非營業時間護理的影響。同樣,我們也需要確保我們的護理模式是具有成本效益的,5 而且這些模式還包括那些可能無法滿足其需求的高風險人群(例如,那些沒有非正式照顧者或有較高身體需求的人)。

總的來説,儘管這項研究表明,居家護理人員服務確實增加了居家死亡的比率,但與其他國家相比,居家死亡的比例處於較低水準。政策制定者需要對流行病學有一個很好的了解,了解他們為之制定服務模式的人群對護理和死亡地點的偏好,1以及這些偏好如何在疾病過程中發生變化。同樣,基於人口的健康服務評估方法需要使用基於其社區內已知的死亡地點偏好的閾值來評估成功。研究人員還需要考慮結果的綜合,在這種情況下,護理和死亡的地點只是1個元素。對護理和/或死亡地點的偏好不是一個簡單的二分法結果;一些權衡因素為這些決定提供了依據,臨床經驗告訴我們,患有局限性疾病的人和他們的照顧者的優先事項往往是一個移動的門柱。2021年的一項研究7使用離散選擇方法來考慮晚期癌症患者在生命最後3周的偏好,發現人們優先考慮病人和照顧者的福祉和症狀控制,而對護理和死亡地點的重視程度較低。同樣,研究表明,親戚或家人的家並不被認為是與患者自己的家同等重要的選擇。1 其他關於以家庭為基礎的姑息治療的研究包括一系列的結果,包括身體症狀的控制,心理、社會和精神上的幸福,以及照顧者的結果,如負擔、掌握、應對和對喪親的影響。

人口研究將繼續在政策和服務規劃中發揮重要作用,以確保我們的醫療保健系統能夠滿足日益增長的臨終關懷需求,並且可以做一些工作來優化我們的行政和臨床數據集,使其更適合於目的。然而,這些數據需要得到護理模式的前瞻性比較有效性研究的支援,以評估對臨終需求和偏好的影響以及最佳成本效益。

原文連結:

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2785790

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