end of life
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Introduction
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
- 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]
- time-limited trial (2-3 days) of a new set of agents often helps everyone
- 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
- past
- value & meaning of person's life
- worth of relationships
- value of previous achievements
- painful memories or shame
- guilt about failures, unfulfilled aspirations
- present
- diruption of personal integrity
- physical, psychologic, & social changes
- increased dependency
- meaning of person's life
- meaning of suffering
- future
- impending separation
- hopelessness
- meaninglessness
- death
- religion
- strength of faith
- a life lived without disgrace to the faith
- existence of afterlife
More general terms
More specific terms
Additional terms
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. <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/15016692 <Internet> http://bmj.bmjjournals.com/cgi/content/full/328/7440/607
- ↑ 2.0 2.1 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: https://www.ncbi.nlm.nih.gov/pubmed/15613670
- ↑ 3.0 3.1 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 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/21041575 <Internet> 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: https://www.ncbi.nlm.nih.gov/pubmed/20934213
- ↑ 5.0 5.1 5.2 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: https://www.ncbi.nlm.nih.gov/pubmed/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. <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/25995357 <Internet> http://www.bmj.com/content/350/bmj.h2361 - ↑ 6.0 6.1 Kelley AS et al. Determinants of medical expenditures in the last 6 months of life. Ann Intern Med 2011 Feb 15; 154:235 PMID: https://www.ncbi.nlm.nih.gov/pubmed/21320939
- ↑ 7.0 7.1 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: https://www.ncbi.nlm.nih.gov/pubmed/22312140
- ↑ 8.0 8.1 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: https://www.ncbi.nlm.nih.gov/pubmed/22837382
- ↑ 9.0 9.1 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 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/23385273 <Internet> http://jama.jamanetwork.com/article.aspx?articleid=1568250
- ↑ 10.0 10.1 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 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/23857860 <Internet> http://www.cmaj.ca/content/early/2013/07/15/cmaj.121274
- ↑ 11.0 11.1 11.2 11.3 11.4 Medical Knowledge Self Assessment Program (MKSAP) 16, 17, 18, 19. American College of Physicians, Philadelphia 2012, 2015, 2018, 2021.
- ↑ 12.0 12.1 12.2 12.3 12.4 12.5 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: https://www.ncbi.nlm.nih.gov/pubmed/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: https://www.ncbi.nlm.nih.gov/pubmed/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: https://www.ncbi.nlm.nih.gov/pubmed/14516502
- ↑ 16.0 16.1 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: https://www.ncbi.nlm.nih.gov/pubmed/24549743
- ↑ 17.0 17.1 17.2 17.3 17.4 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: https://www.ncbi.nlm.nih.gov/pubmed/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: https://www.ncbi.nlm.nih.gov/pubmed/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: https://www.ncbi.nlm.nih.gov/pubmed/18503535
- ↑ 21.0 21.1 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 - ↑ 22.0 22.1 Prigerson HG et al Chemotherapy Use, Performance Status, and Quality of Life at the End of Life. JAMA Oncol. Published online July 23, 2015 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/26203912 <Internet> 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: https://www.ncbi.nlm.nih.gov/pubmed/26203585 - ↑ 23.0 23.1 Lowes R Medicare Approves Payment for End-of-Life Counseling Medscapw Oncology. October 30, 2015 http://www.medscape.com/viewarticle/853541
- ↑ 24.0 24.1 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: https://www.ncbi.nlm.nih.gov/pubmed/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: https://www.ncbi.nlm.nih.gov/pubmed/17989116
- ↑ Rosenbaum L Falling Together - Empathetic Care for the Dying. N Engl J Med 2016; 374:587-590. February 11, 2016 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/26759931 <Internet> 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: https://www.ncbi.nlm.nih.gov/pubmed/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: https://www.ncbi.nlm.nih.gov/pubmed/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/
- ↑ 30.0 30.1 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 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/27367547 <Internet> 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 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/27367457 <Internet> http://archinte.jamanetwork.com/article.aspx?articleid=2529495 - ↑ 31.0 31.1 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 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/24906901 <Internet> 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: https://www.ncbi.nlm.nih.gov/pubmed/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: https://www.ncbi.nlm.nih.gov/pubmed/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: https://www.ncbi.nlm.nih.gov/pubmed/24556532
- ↑ 34.0 34.1 34.2 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: https://www.ncbi.nlm.nih.gov/pubmed/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: https://www.ncbi.nlm.nih.gov/pubmed/27588580 - ↑ 35.0 35.1 Beernaert K, Smets T, Cohen J et al. Improving comfort around dying in elderly people: A cluster randomised controlled trial. Lancet 2017 May 16; <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/28526493 <Internet> 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; <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/28526494 <Internet> 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 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/28767342 Free Article <Internet> http://www.nejm.org/doi/full/10.1056/NEJMc1705630
- ↑ 37.0 37.1 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: https://www.ncbi.nlm.nih.gov/pubmed/30906987
- ↑ 38.0 38.1 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: https://www.ncbi.nlm.nih.gov/pubmed/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: https://www.ncbi.nlm.nih.gov/pubmed/33970183 https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2779426 - ↑ 39.0 39.1 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
- ↑ 40.0 40.1 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: https://www.ncbi.nlm.nih.gov/pubmed/35866716 PMCID: PMC9420787 (available on 2023-09-15) https://acsjournals.onlinelibrary.wiley.com/doi/10.1002/cncr.34400
- ↑ 41.0 41.1 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: https://www.ncbi.nlm.nih.gov/pubmed/36424671 https://academic.oup.com/jac/advance-article-abstract/doi/10.1093/jac/dkac405/6845777
- ↑ 42.0 42.1 42.2 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: https://www.ncbi.nlm.nih.gov/pubmed/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 <PubMed> PMID: https://www.ncbi.nlm.nih.gov/pubmed/38301074 - ↑ <Internet> http://endoflife.stanford.edu