作者：Paula Moyer
出处：WebMD医学新闻
审阅：Gary D. Vogin, MD

　　Jan. 24, 2005(纽奥良) - 在美国安宁照护缓和医学学会暨安宁照护护士协会的年会上，Joan Teno作出发表指出，笼罩在安宁机构里的死亡阴影令人沮丧，但是这种情况是可以大幅改善的；也就是，将缓和治疗的标准确立得更清楚，现有的治疗方式就以这个标准作持续性的评量。
　　
　　在布朗医学院社区保健医学系担任教授的Teno医师表示，有太多在安宁照护机构里濒临死亡的人，他们的症状没有减轻，无法和医师沟通，没有情绪上的支持，也没有受到尊重；但是，Teno医师主张，安宁照护上所发现的这些缺点，是可以用系统性的方式来矫正的，以期在照护机构里以更完善的方式来照顾濒死患者及他们的家属。
　　
　　Teno医师的发表专注于SUPPORT(the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment)的结果；有一篇关于早期SUPPORT研究的文章，曾经发表于去年3月24日的JAMA期刊上。

　　SUPPORT的研究搜集了多项访谈的资料，对象包含患者本身、遗嘱代理人及医师们；评估的医疗项目包含病症严重度、症状的强度及治疗成本等；纪录包含主要治疗法的决定及治疗效果；总数1578位患者中，有1059位(67.1%)在研究进行期间死亡，死亡的案例发生在照护机构里，如疗养院、医院等；519位在家死亡的案例中，有198位(38.2%)没有接受到任何的医疗照护，65位(12.5%)接受到居家照护，256位(49.3%)则接受到了安宁照护的服务；从患者家属得知，有近25%的患者，其疼痛及呼吸困难的状况没有受到适切的医疗；家属中有25%表示和医生无法作有效的沟通。
　　
　　接受居家照护机构、疗养院及医院照顾的患者中，有超过三分之一的家属表示，患者的情绪没有受到足够的支持；至于家属情绪的安抚，他们也有一两项的微言，表达这类关切的家属占了25%。
　　
　　接受疗养院照护的家属中，有68.2%表示他们的亲人在死亡前有受到尊重，居家照护者则有96.2%的家属作出同样的表示；再则，接受安宁照护的患者家属中，有70.7%将照护服务评比为「优」，一般院护服务及居家照护的接受者中，低于50%的患者家属作出相同的评等。
　　
　　根据与家属访谈的结果，SUPPORT研究对美国70%的濒死患者作出评估，项目包含照护品质、地域性对品质的影响；例如，在美国南部，疗养院的住院者在有痴呆的现象时，比较不会有「不愿复苏」的情况，因此喂食管的使用频率比较高。
　　
　　Teno医师向Medscape表示，我们看到了州与州之间存有极大的差异：至于产生差异的原因及其与患者意愿间的关连，都必须积极的去了解；我们发现，这些差异并非患者的意愿所造成，而是当地的保健系统所导致的，例如，床位的数量。
　　
　　Teno医师表示，这项研究的发现可以帮助研究人员，发展出一套照护提供者及照护机构都可以使用的工具，再利用这套工具来改善安宁照护的品质；这项工具可以由网路下载http://www.chcr.brown.e...olkit.htm。
　　
　　Teno医师进一步表示，该项工具是以患者及家属为中心所发展出来的，一个照护机构要提供好的照护品质，就必须要为患者提供足够的舒适度及精神上的支持；支持共同下决定的做法，以尊严及尊重对待患者；提供家属们足够的资讯，精神上的支持；对全程的治疗作适度的协调。
　　
　　为了加速对问题点的确认，该线上工具对于上述的问题，都提供了一项结果的测量标准。
　　
　　Teno医师的研究总结指出，目前的安宁照护及疗养院照护并未陷于困境；因为有太多的老年人死于疗养院，因此Teno医师认为，安宁照护的提供者及缓和医学的从业人员，应该要全力支持疗养院，并把疗养院的工作人员视为自己的工作伙伴。
　　
　　Teno医师表示，我们必须要和疗养院合作，并了解相关的政策障碍，进而帮助疗养院的同仁改进安宁照护的品质；身为医疗主导者，在疗养院里，我们必须记住自己是客人的身分，要对他们表示尊重，适时提供意见。

Research Identifies Areas for Improvement in End-of-Life Care

By Paula Moyer
Medscape Medical News


Jan. 24, 2005 (New Orleans) — The frustrating vignette of dying in an institution can be markedly improved if clear standards of palliative care are identified and existing care patterns are continually measured against those standards, according to Joan Teno, MD, MS, who presented her findings here at the annual joint meeting of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association.

"Too many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect," Dr. Teno said in her presentation. She is a professor of community health and medicine at Brown Medical School in Providence, Rhode Island. However, she asserted that this chasm of unmet needs can be effectively breached by a systematic approach that brings the hospice approach to any facility that attends to the dying and their loved ones.

Her presentation focused on the findings of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT). A letter describing an earlier version of the SUPPORT study was published in the March 24, 2004, issue of JAMA.

The SUPPORT study gathered its data from interviews with patients, surrogate decision-makers, and attending physicians; reviews of medical charts for severity of illness, intensity, and cost of treatment; and recording of key therapeutic decisions and patient outcomes. For 1,059 (67.1%) of 1,578 people who died during the study period, death took place in an institution, such as a nursing home or hospital. Of the 519 patients who died at home, 198 (38.2%) received no nursing services, while 65 patients (12.5%) had home nursing services and 256 patients (49.3%) had home hospice services. Nearly 25% of all patients with pain or dyspnea received inadequate treatment, according to family members, and 25% of family members reported concerns with physician communication.

The family members of more than one third of patients cared for by a home health agency, nursing home, or hospital said that there was not enough emotional support provided for the patient, or they expressed one or more concerns with family emotional support. Among family members of those who received home hospice services, approximately one fifth reported such concerns.

Among family members of nursing home residents, 68.2% said that their loved ones were always treated with respect at the end of life compared with 79.6% of those receiving home health services and 96.2% of those receiving home hospice services. In addition, 70.7% of family members of hospice patients rated their loved ones' care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services (P < .001).

As a result of the interviews with relatives, the SUPPORT study identified national estimates of the quality of end-of-life care for 70% of people dying in the U.S., and geographic variations in that quality. For example, nursing home residents with dementia were less likely to have "do not resuscitate" orders in southern states. The use of feeding tubes for such patients was higher in states where "do not resuscitate" orders were issued less frequently.

"We saw a tremendous variation of service by state," Dr. Teno told Medscape in an interview. "We need to understand what's driving the variation and how it relates to patient preferences. We found the variation driven not by patient desires but by local healthcare system issues, such as number of beds per capita."

The study's findings led the researchers to develop a tool that providers and institutions can use to identify the areas in which their end-of-life care might need to improve, Dr. Teno said. The tool is available online at http://www.chcr.brown.ed...lkit.htm.

"The tool is based on the model of patient-focused, family-centered medical care," Dr. Teno said. "For an institution to provide high-quality end-of-life care, it has to provide desired physical comfort and emotional support to the dying person; promote shared decision-making; treat the dying person with dignity and respect; tend to needs of family for information and emotional support; and coordinate care across settings of care."

To facilitate the identification of problematic areas, the online tool is made up of several outcome measures for each of the above domains.

Dr. Teno's research has led her to conclude that hospice care and nursing homes are not in an either/or struggle. Because so many elderly people die in nursing homes, she advocates that providers of hospice and palliative medicine "embrace the nursing home" and work with nursing home staff as partners.

"We need to collaborate with nursing homes and understand their unique regulatory barriers, and help nursing home staff to see ways that they can improve end-of-life care," Dr. Teno said. "As medical directors, we need to remember that we're guests in the facility, to be respectful that this is their nursing home, and offer suggestions from that perspective."

AAHPN-HPNA 2005 Annual Assembly: Abstract 101. Presented Jan. 20, 2005.

Reviewed by Gary D. Vogin, MD