作者：Paula Moyer
出處：WebMD醫學新聞
審閱：Gary D. Vogin, MD

　　Jan. 24, 2005(紐奧良) - 在美國安寧照護緩和醫學學會暨安寧照護護士協會的年會上，Joan Teno作出發表指出，籠罩在安寧機構裡的死亡陰影令人沮喪，但是這種情況是可以大幅改善的；也就是，將緩和治療的標準確立得更清楚，現有的治療方式就以這個標準作持續性的評量。
　　
　　在布朗醫學院社區保健醫學系擔任教授的Teno醫師表示，有太多在安寧照護機構裡瀕臨死亡的人，他們的症狀沒有減輕，無法和醫師溝通，沒有情緒上的支持，也沒有受到尊重；但是，Teno醫師主張，安寧照護上所發現的這些缺點，是可以用系統性的方式來矯正的，以期在照護機構裡以更完善的方式來照顧瀕死患者及他們的家屬。
　　
　　Teno醫師的發表專注於SUPPORT(the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment)的結果；有一篇關於早期SUPPORT研究的文章，曾經發表於去年3月24日的JAMA期刊上。

　　SUPPORT的研究蒐集了多項訪談的資料，對象包含患者本身、遺囑代理人及醫師們；評估的醫療項目包含病症嚴重度、症狀的強度及治療成本等；紀錄包含主要治療法的決定及治療效果；總數1578位患者中，有1059位(67.1%)在研究進行期間死亡，死亡的案例發生在照護機構裡，如療養院、醫院等；519位在家死亡的案例中，有198位(38.2%)沒有接受到任何的醫療照護，65位(12.5%)接受到居家照護，256位(49.3%)則接受到了安寧照護的服務；從患者家屬得知，有近25%的患者，其疼痛及呼吸困難的狀況沒有受到適切的醫療；家屬中有25%表示和醫生無法作有效的溝通。
　　
　　接受居家照護機構、療養院及醫院照顧的患者中，有超過三分之一的家屬表示，患者的情緒沒有受到足夠的支持；至於家屬情緒的安撫，他們也有一兩項的微言，表達這類關切的家屬佔了25%。
　　
　　接受療養院照護的家屬中，有68.2%表示他們的親人在死亡前有受到尊重，居家照護者則有96.2%的家屬作出同樣的表示；再則，接受安寧照護的患者家屬中，有70.7%將照護服務評比為「優」，一般院護服務及居家照護的接受者中，低於50%的患者家屬作出相同的評等。
　　
　　根據與家屬訪談的結果，SUPPORT研究對美國70%的瀕死患者作出評估，項目包含照護品質、地域性對品質的影響；例如，在美國南部，療養院的住院者在有癡呆的現象時，比較不會有「不願復甦」的情況，因此餵食管的使用頻率比較高。
　　
　　Teno醫師向Medscape表示，我們看到了州與州之間存有極大的差異：至於產生差異的原因及其與患者意願間的關連，都必須積極的去了解；我們發現，這些差異並非患者的意願所造成，而是當地的保健系統所導致的，例如，床位的數量。
　　
　　Teno醫師表示，這項研究的發現可以幫助研究人員，發展出一套照護提供者及照護機構都可以使用的工具，再利用這套工具來改善安寧照護的品質；這項工具可以由網路下載http://www.chcr.brown.e...olkit.htm。
　　
　　Teno醫師進一步表示，該項工具是以患者及家屬為中心所發展出來的，一個照護機構要提供好的照護品質，就必須要為患者提供足夠的舒適度及精神上的支持；支持共同下決定的做法，以尊嚴及尊重對待患者；提供家屬們足夠的資訊，精神上的支持；對全程的治療作適度的協調。
　　
　　為了加速對問題點的確認，該線上工具對於上述的問題，都提供了一項結果的測量標準。
　　
　　Teno醫師的研究總結指出，目前的安寧照護及療養院照護並未陷於困境；因為有太多的老年人死於療養院，因此Teno醫師認為，安寧照護的提供者及緩和醫學的從業人員，應該要全力支持療養院，並把療養院的工作人員視為自己的工作夥伴。
　　
　　Teno醫師表示，我們必須要和療養院合作，並了解相關的政策障礙，進而幫助療養院的同仁改進安寧照護的品質；身為醫療主導者，在療養院裡，我們必須記住自己是客人的身分，要對他們表示尊重，適時提供意見。

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