Family Perspectives on End-of-Life Care at the Last Place of Care

Used in 2 entries

For each citing entry, the verbatim excerpt and Likelier's calculation notes (how the source's number was converted to the lifetime-probability framing) are shown below. Click through to read the full claim ledger.

1. [1] Advance directive timing Decision · inaction side

   Statistic

   Among 1,578 US decedents, about one quarter with pain or dyspnea did not receive adequate treatment, and more than one third of families in institutional settings reported insufficient emotional support vs about one fifth in home hospice

   “"About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication... More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or 1 or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services."”

   Calculation notes

   Teno et al. 2004 JAMA — mortality follow-back survey of family members of 1,578 decedents (representing ~1.97 million US deaths from chronic illness in 2000). This paper measures family-reported quality-of-care concerns by setting (undertreated pain, insufficient emotional support, respect), NOT advance directives or regret. It is included as corroborating context that bereaved families frequently report unmet end-of-life care needs — the gap that advance care planning aims to reduce — not as a direct measure of the inaction-side regret rate.
   

   Source date: 2004-01-01 · Accessed: 2026-05-04

2. [2] MAID vs hospice Decision · inaction side

   Statistic

   Bereaved families of 1,578 decedents: ~25% said pain was not adequately treated and ~24% had concerns with physician communication; 50.2% said the patient did not get enough emotional support; nursing-home patients least likely to be 'always' treated with respect (68.2% vs 96.2% home hospice)

   “"Nearly one fourth of all respondents reported that the patient did not receive any or enough help with pain (24.2%) or dyspnea (22.4%). About 1 in 4 families reported concerns with physician communication regarding medical decision making (23.9%). Half of family members reported that the patient did not receive enough emotional support (50.2%). Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively)."”

   Calculation notes

   Teno et al. 2004 JAMA — mortality follow-back survey of bereaved families of decedents (n=1,578; PMID 14709580). Correct article is fullarticle/197944 (the previously cited fullarticle/198197 was an unrelated software review). The inaction-side ~25% proxy is the rate of clearly unmet end-of-life needs — ~24% inadequate pain treatment and ~24% physician-communication concerns; family rating of "always treated with respect" was as low as 68.2% in nursing homes (i.e. ~32% short of always). This is used as an unmet-needs / dissatisfaction proxy because no survey asks natural-death families "do you wish MAID had been chosen." Hospice deaths scored far better (96.2% respect), which is why the proxy is a cross-setting figure, not a universal property of natural dying.
   

   Source date: 2004-01-07 · Accessed: 2026-06-30