Search
end of life
Also see impending death
Epidemiology:
- hospice is increasingly used at the end of life
- this trend has not necessarily made death a more peaceful experience for patients or their families
- frenzied moves during the last months of life
- most medical care & death still occurs in an institution rather than at home [9]
- end-of-life decisions in minorities tend to be family-centered [17]
- hispanics more so than whites believe that the family rather than the patient should be informed of prognosis & should make end-of-life decisions for patient [17]
- hispanic adults often confer with several extended family members in end-of-life discussion, but final decisions are usually made by one family member [17]
- hispanics tend to choose life-sustaining treatments rather than refuse them [17]
- black patients were more likely to overestimate their life expectancy & elect intensive end-of-life medical intervention than white patients
- black nursing home residents are hospitalized during the last 30 days of life more frequenly than white residents (43 vs 32%)
- patients with severe cognitive impairment, the difference is even larger (37 vs 22%) [34]
- white nursing home residents are more likely than black residents to have do-not-hospitalize or do-not-resuscitate orders [34]
- 1/3 of nursing home patients with atrial fibrillation continue to receive anticoagulation at the end-of-life [38]
Clinical manifestations:
- loss of appetite (almost all patients)
- nearly all experience grief
- associated with disease progression
- patients retain ability for pleasure
- grief occurs in waves
- patients able to look forward to future
- major depression in 1-53%
- depression is never normal in dying patients [11]
- pain is a risk factor [11]
- depression is constant & unremitting
- anhedonia
- suicidal ideation
- respiratory secretions, death rattle, tachypnea [12]
- also see impending death
Management:
- discussions about death should be thought of as a process rather than a single event [10]
- discontinue unnecessary intravenous fluids [12]
- antidepressant for depression
- grief does not need treatment (see clinical manifestations)
- stimulant (dextroamphetamine, methylphenidate, pemoline) effective within 24-48 hours
- antibiotics [42]
- time-limited trial (2-3 days) of a new set of agents often helps everyone
- doctors, patients, families
- predetermined objective markers of progress (defervescence, oxygenation)
- agreement on next steps if the trial is ineffective
- use oral agents whenever possible
- patients who cannot take oral agents due to frailty or dementia less likely to benefit from antibiotics
- legitimate concerns of expense should not be reviewed in the patient's room
- all focus should be on the individual patient [42]
- opiates as needed for pain
- no evidence of benefit for long-acting opiates over short- acting opiates
- laxative + docusate for constipation
- opiates for refractory dyspnea
- atropine 1% (ophthalmic) administered sublingual 2 drops every 2 hours for terminal respiratory secretions (death rattle) [12]
- in home palliative care reduces end-of-life emergency department visits & hospitalizations [12,31]
- implementing standardized improvements in end-of-life care in acute hospitals beneficial per nursing, but not per family [35]
- small meals of foods preferred by the patient [12]
- enteral nutrition or parenteral nutrition does not improve survival [11]
- music at the end of life may bring comfort [39]
Notes:
- CMS (Medicare) approves payment for voluntary end-of-life counseling [23]
- a templated note in the electronic health record helps to organize end-of-life goals of care discussions [40]
- aggressive end-of-life care does not improve quality of life or duration of life [11]
- patients with hematologic malignancies often receive aggressive end-of-life care [16]
- chemotherapy given near the end of life does not reduce mortality or improve quality of life o [22]
- palliative care consultation for cancer patients at the end-of-life may reduce inappropriate antibiotic prescribing (also see antimicrobial stewardship) [41]
- also see artificial hydration in terminally ill patients
- end-of-life medical expenditures exceed costs of prior care & are likely to be unsustainable [6]
- US hospitals vary widely on their use of resources for end of life care.
- preventive medication use common in terminal cancer [37]
- prevalence of pain increases rapidly in the last few months of life, regardless of the cause of death [3]
- advanced dementia is consistently associated with severe disability in the last year of life [5]
- hospitalization is a harbinger of disability [5]
- end-of-life care discussions with patients with advanced cancer often come late in the course of the disease [7]
- Medicare proposes reimbursing physicians for end-of-life discussions with patients [21]
- guiding patient surrogates' end-of-life decision making is both appropriate & necessary [8]
- higher ratings of satisfaction by families correlate with less-intensive end-of-life cancer care [24]
- patients with ESRD, cardiopulmonary failure, less likely to receive palliative care consultation (44-50%) than those with cancer (74%) or dementia (61%); more likely to die in ICU than those with cancer (34%) or dementia (10%); less likely to have do-not-resuscitate orders (87% vs 94%) [30]
No support for belief that cancer patients can delay their death for an important event. [2]
Spiritual & existential concerns of patients at end-of-life
1) past
a) value & meaning of person's life
b) worth of relationships
c) value of previous achievements
d) painful memories or shame
e) guilt about failures, unfulfilled aspirations
2) present
a) diruption of personal integrity
b) physical, psychologic, & social changes
c) increased dependency
d) meaning of person's life
e) meaning of suffering
3) future
a) impending separation
b) hopelessness
c) meaninglessness
d) death
4) religion
a) strength of faith
b) a life lived without disgrace to the faith
c) existence of afterlife
Related
artificial hydration in terminally ill patients
death
hospice
palliative care
Specific
impending death
General
geriatric disorder; disease of old age; geriatric syndrome
References
- Journal Watch 24(9):75, 2004
Wennberg JE, Fisher ES, Stukel TA, Skinner JS, Sharp SM, Bronner KK.
Use of hospitals, physician visits, and hospice care during last
six months of life among cohorts loyal to highly respected
hospitals in the United States.
BMJ. 2004 Mar 13;328(7440):607.
PMID: 15016692
http://bmj.bmjjournals.com/cgi/content/full/328/7440/607
- Journal Watch 25(2):15, 2005
Young DC, Hade EM.
Holidays, birthdays, and postponement of cancer death.
JAMA. 2004 Dec 22;292(24):3012-6.
PMID: 15613670
- Physician's First Watch, Nov 2, 2010
Massachessetts Medical Society
http://www.jwatch.org
Smith AK et al
The Epidemiology of Pain During the Last 2 Years of Life
Annals of Internal Medicine 2010, 153:563-569
PMID: 21041575
http://www.annals.org/content/153/9/563.abstract
- Curtis JR and Vincent J-L.
Ethics and end-of-life care for adults in the intensive care
unit.
Lancet 2010 Oct 16; 376:1347.
PMID: 20934213
- Gill TM, Gahbauer EA, Han L, Allore HG.
Trajectories of disability in the last year of life.
N Engl J Med 2010 Apr 1; 362(13):1173-1180.
PMID: 20357280
- Gill TM et al.
The role of intervening hospital admissions on
trajectories of disability in the last year of life:
Prospective cohort study of older people.
BMJ 2015; 350:h2361.
PMID: 25995357
http://www.bmj.com/content/350/bmj.h2361
- Kelley AS et al.
Determinants of medical expenditures in the last 6 months of
life.
Ann Intern Med 2011 Feb 15; 154:235
PMID: 21320939
- Mack JW et al.
End-of-life care discussions among patients with advanced
cancer: A cohort study.
Ann Intern Med 2012 Feb 7; 156:204.
PMID: 22312140
- Brush DR et al.
Recommendations to limit life support: A national survey
of critical care physicians.
Am J Respir Crit Care Med 2012 Oct 1; 186:633.
PMID: 22837382
- Teno JM et al.
Change in end-of-life care for Medicare beneficiaries:
Site of death, place of care, and health care transitions in
2000, 2005, and 2009. JAMA 2013 Feb 6; 309:470
PMID: 23385273
http://jama.jamanetwork.com/article.aspx?articleid=1568250
- You JJ, Fowler RA, Heyland DK et al
Just ask: discussing goals of care with patients in hospital
with serious illness
CMAJ. July 15, 2013
PMID: 23857860
http://www.cmaj.ca/content/early/2013/07/15/cmaj.121274
- Medical Knowledge Self Assessment Program (MKSAP) 16, 17, 18, 19.
American College of Physicians, Philadelphia 2012, 2015, 2018, 2021.
- Geriatric Review Syllabus, 8th edition (GRS8)
Durso SC and Sullivan GN (eds)
American Geriatrics Society, 2013
- Geriatric Review Syllabus, 9th edition (GRS9)
Medinal-Walpole A, Pacala JT, Porter JF (eds)
American Geriatrics Society, 2016
- Geriatric Review Syllabus, 11th edition (GRS11)
Harper GM, Lyons WL, Potter JF (eds)
American Geriatrics Society, 2022
- Kagawa-Singer M1, Blackhall LJ.
Negotiating cross-cultural issues at the end of life:
"You got to go where he lives".
JAMA. 2001 Dec 19;286(23):2993-3001.
PMID: 11743841
- Ellershaw J, Ward C.
Care of the dying patient: the last hours or days of life.
BMJ. 2003 Jan 4;326(7379):30-4.
PMID: 12511460
- Ferris FD, von Gunten CF, Emanuel LL.
Competency in end-of-life care: last hours of life.
J Palliat Med. 2003 Aug;6(4):605-13.
PMID: 14516502
- Hui D et al.
Quality of end-of-life care in patients with hematologic
malignancies: A retrospective cohort study.
Cancer 2014 May 15; 120:1572
PMID: 24549743
- Geriatric Review Syllabus, 8th edition (GRS8)
Durso SC and Sullivan GN (eds)
American Geriatrics Society, 2013
- Connolly A, Sampson EL, Purandare N.
End-of-life care for people with dementia from ethnic minority
groups: a systematic review.
J Am Geriatr Soc. 2012 Feb;60(2):351-60. Review.
PMID: 22332675
- Kwak J, Haley WE.
Current research findings on end-of-life decision making
among racially or ethnically diverse groups.
Gerontologist. 2005 Oct;45(5):634-41. Review.
PMID: 16199398
- Bryon E, Gastmans C, de Casterle BD.
Decision-making about artificial feeding in end-of-life care:
literature review.
J Adv Nurs. 2008 Jul;63(1):2-14. Review.
PMID: 18503535
- JWatch Editors
Medicare Proposes Reimbursing Physicians for End-of-Life
Conversations
Physician's First Watch, July 10, 2015
David G. Fairchild, MD, MPH, Editor-in-Chief
Massachusetts Medical Society
http://www.jwatch.org
- Proposed policy, payment, and quality provisions changes to
the Medicare Physician Fee Schedule for Calendar Year 2016.
http://www.cms.gov/Newsroom/MediaReleaseDatabase/Fact-sheets/2015-Fact-sheets-items/2015-07-08.html
- Prigerson HG et al
Chemotherapy Use, Performance Status, and Quality of Life at
the End of Life.
JAMA Oncol. Published online July 23, 2015
PMID: 26203912
http://oncology.jamanetwork.com/article.aspx?articleid=2398177
- Blanke CD, Fromme EK
Chemotherapy Near the End of Life: First-and Third and Fourth
(Line)-Do No Harm.
JAMA Oncol. Published online July 23, 2015
PMID: 26203585
- Lowes R
Medicare Approves Payment for End-of-Life Counseling
Medscapw Oncology. October 30, 2015
http://www.medscape.com/viewarticle/853541
- Wright AA, Keating NL, Ayanian JZ et al.
Family perspectives on aggressive cancer care near the end
of life.
JAMA 2016 Jan 19; 315:284
PMID: 26784776
- Curtis JR
Palliative and end-of-life care for patients with severe COPD.
Eur Respir J. 2008 Sep;32(3):796-803. Epub 2007 Nov 7.
PMID: 17989116
- Rosenbaum L
Falling Together - Empathetic Care for the Dying.
N Engl J Med 2016; 374:587-590. February 11, 2016
PMID: 26759931
http://www.nejm.org/doi/full/10.1056/NEJMms1516444
- Block SD.
Assessing and managing depression in the terminally ill
patient. ACP-ASIM End-of-Life Care Consensus Panel.
American College of Physicians - American Society of Internal
Medicine.
Ann Intern Med. 2000 Feb 1;132(3):209-18.
PMID: 10651602
- Wood GJ, Shega JW, Lynch B, Von Roenn JH.
Management of intractable nausea and vomiting in patients at
the end of life: "I was feeling nauseous all of the time
. . . nothing was working".
JAMA. 2007 Sep 12;298(10):1196-207.
PMID: 17848654
- NEJM Catalyst. April 26, 2016
"Time Spent at Home" - A Patient-Defined Outcome.
http://catalyst.nejm.org/time-spent-at-home-a-patient-defined-outcome/
- Wachterman MW et al
Quality of End-of-Life Care Provided to Patients With Different
Serious Illnesses.
JAMA Intern Med. Published online June 26, 2016
PMID: 27367547
http://archinte.jamanetwork.com/article.aspx?articleid=2529496
- Fischer SM, Bekelman D, Bailey FA
Family Assessment of Quality of Care in the Last Month of Life.
JAMA Intern Med. Published online June 26, 2016
PMID: 27367457
http://archinte.jamanetwork.com/article.aspx?articleid=2529495
- Seow H et al.
Impact of community based, specialist palliative care teams
on hospitalisations and emergency department visits late in
life and hospital deaths: A pooled analysis.
BMJ 2014 Jun 6; 348:g3496
PMID: 24906901
http://www.bmj.com/content/348/bmj.g3496
- Check DK, Samuel CA, Rosenstein DL, Dusetzina SB.
Investigation of racial disparities in early supportive
medication use and end-of-life care among Medicare
beneficiaries with stage IV breast cancer.
J Clin Oncol 2016 Jul 1; 34:2265.
PMID: 27228327
- Trevino KM, Zhang B, Shen MJ, Prigerson HG.
Accuracy of advanced cancer patients' life expectancy
estimates: The role of race and source of life expectancy
information.
Cancer 2016 Jun 15; 122:1905
PMID: 27028270
- Whellan DJ, Goodlin SJ, Dickinson MG et al
End-of-life care in patients with heart failure.
J Card Fail. 2014 Feb;20(2):121-34.
PMID: 24556532
- Cai S, Miller SC, Mukamel DB.
Racial differences in hospitalizations of dying Medicare-
Medicaid dually eligible nursing home residents.
J Am Geriatr Soc 2016 Sep; 64:1798.
PMID: 27549337
- Byhoff E, Harris JA, Langa KM, Iwashyna TJ.
Racial and ethnic differences in end-of-life Medicare
expenditures.
J Am Geriatr Soc 2016 Sep; 64:1789.
PMID: 27588580
- Beernaert K, Smets T, Cohen J et al.
Improving comfort around dying in elderly people:
A cluster randomised controlled trial.
Lancet 2017 May 16;
PMID: 28526493
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31265-5/fulltext
- Aslakson RA, Lorenz K.
Being CAREFuL about improving end-of-life care in hospitals.
Lancet 2017 May 16;
PMID: 28526494
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31325-9/fulltext
- van der Heide A, van Delden JJM, Onwuteaka-Philipsen BD.
End-of-Life Decisions in the Netherlands over 25 Years.
N Engl J Med 2017; 377:492-494. August 3, 2017
PMID: 28767342 Free Article
http://www.nejm.org/doi/full/10.1056/NEJMc1705630
- Morin L, Todd A, Barclay S, Wastesson JW, Fastbom J, Johnell K.
Preventive drugs in the last year of life of older adults
with cancer: Is there room for deprescribing?
Cancer 2019 Jul 1; 125:2309
PMID: 30906987
- Ouellet GM et al.
Anticoagulant use for atrial fibrillation among persons with
advanced dementia at the end of life.
JAMA Intern Med 2021 May 10; [e-pub]
PMID: 33970197 PMCID: PMC8111560 (available on 2022-05-10)
https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2779424
- Parks AL, Covinsky KE.
Anticoagulation at the end of life: Time for a rational framework.
JAMA Intern Med 2021 May 10; [e-pub].
PMID: 33970183
https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2779426
- Gordon M, Clements-Cortes A.
Music at the End of Life: Bringing Comfort and Saying Goodbye
Through Song and Story.
Annals of Long-Term Care. November 13, 2021
https://www.hmpgloballearningnetwork.com/site/altc/articles/music-end-life-bringing-comfort-and-saying-goodbye-through-song-and-story
- Epstein AS et al.
Goals of care documentation by medical oncologists and oncology patient
end-of-life care outcomes.
Cancer 2022 Sep 15; 128:3400.
PMID: 35866716 PMCID: PMC9420787 (available on 2023-09-15)
https://acsjournals.onlinelibrary.wiley.com/doi/10.1002/cncr.34400
- Kim JH et al.
The impact of palliative care consultation on reducing antibiotic overuse
in hospitalized patients with terminal cancer at the end of life:
A propensity score-weighting study.
J Antimicrob Chemother 2022 Nov 25; dkac405; [e-pub].
PMID: 36424671
https://academic.oup.com/jac/advance-article-abstract/doi/10.1093/jac/dkac405/6845777
- Karlin D et al
State-of-the-Art Review: Use of Antimicrobials at the End of Life.
Clin Infect Dis. 2024. Mar 20;78(3):e27-e36
PMID: 38301076
https://academic.oup.com/cid/article/78/3/e27/7596076
- Karlin D et al
Executive Summary: State-of-the-Art Review: Use of Antimicrobials at the End of Life.
Clin Infect Dis. 2024. Mar 20;78(3):493-495
PMID: 38301074
- http://endoflife.stanford.edu