Symptoms and treatment when death is expected in dementia patients in long-term care facilities

BMC Geriatrics

Wilco P Achterberg³  Jenny T van der Steen²  Mirjam C van Soest-Poortvliet²  Monique AA Caljouw³  Maartje S Klapwijk¹ 

[1] Marente, long-term care facility van Wijckerslooth, Oegstgeest, The Netherlands;Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands;Department of Public Health and Primary Care, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands

关键词: End-of-life;    Dementia;    Symptoms;    Long-term care;    Quality of dying;   

Others  :  1089997
DOI  :  10.1186/1471-2318-14-99

 received in 2014-07-04, accepted in 2014-08-20,  发布年份 2014

【 摘 要 】

Background

Although dementia at the end of life is increasingly being studied, we lack prospective observational data on dying patients. In this study symptoms were observed in patients with dementia in the last days of life.

Methods

When the elderly care physicians in two Dutch nursing homes expected death within one week, symptoms of (dis)comfort, pain and suffering were observed twice daily. For this the Pain Assessment in Advanced Dementia (PAINAD; range 0–10), Discomfort Scale-Dementia of Alzheimer Type (DS-DAT; range 0–27), End-Of-Life in Dementia-Comfort Assessment in Dying (EOLD-CAD; range 14–42) and an adapted version of the Mini-Suffering State Examination (MSSE; range 0–9), were used. Information on care, medical treatment and treatment decisions were also collected.

Results

Twenty-four participants (median age 91 years; 23 females), were observed several times (mean of 4.3 observations (SD 2.6)), until they died. Most participants (n = 15) died from dehydration/cachexia and passed away quietly (n = 22). The mean PAINAD score was 1.0 (SD 1.7), DS-DAT 7.0 (SD 2.1), EOLD-CAD 35.1 (SD 1.7), and MSSE 2.0 (SD 1.7). All participants received morphine, six received antibiotics, and rehydration was prescribed once.

Conclusion

In these patients with dementia and expected death, a low symptom burden was observed with validated instruments, also in dehydrated patients without aggressive treatment. A good death is possible, but might be enhanced if the symptom burden is regularly assessed with validated instruments. The use of observation tools may have influenced the physicians to make treatment decisions.

【 授权许可】

   
2014 Klapwijk et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

【 参考文献 】

• [1]Mura T, Dartigues JF, Berr C: How many dementia cases in France and Europe? Alternative projections and scenarios 2010–2050. Eur J Neurol 2010, 17:252-259.
• [2]Thies W, Bleiler L: Alzheimer's disease facts and figures. Alzheimers Dement 2013, 2013(9):208-245.
• [3]World Health Organization (WHO): Dementia: a public health priority. Geneva: WHO; 2012. Available from: http://apps.who.int/iris/bitstream/10665/75263/1/9789241564458_eng.pdf webcite. Accessed July 2nd, 2014
• [4]Ribbe MW, Ljunggren G, Steel K, Topinkova E, Hawes C, Ikegami N, Henrard JC, Jonnson PV: Nursing homes in 10 nations: a comparison between countries and settings. Age Ageing 1997, 26(Suppl 2):3-12.
• [5]Kane RA, Jordan N, Grant LA: Goals for Alzheimer's care in nursing homes: what kind of differences do special care units expect to make? J Health Hum Serv Adm 1998, 20:311-332.
• [6]Conroy S, Van Der Cammen T, Schols J, Van BR, Peteroff P, Luxton T: Medical services for older people in nursing homes–comparing services in England and The Netherlands. J Nutr Health Aging 2009, 13:559-563.
• [7]Helton MR, van der Steen JT, Daaleman TP, Gamble GR, Ribbe MW: A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumonia. Ann Fam Med 2006, 4:221-227.
• [8]Koopmans RT, Lavrijsen JC, Hoek JF, Went PB, Schols JM: Dutch elderly care physician: a new generation of nursing home physician specialists. J Am Geriatr Soc 2010, 58:1807-1809.
• [9]Gill TM, Gahbauer EA, Han L, Allore HG: Trajectories of disability in the last year of life. N Engl J Med 2010, 362:1173-1180.
• [10]Houttekier D, Cohen J, Bilsen J, Addington-Hall J, Onwuteaka-Philipsen BD, Deliens L: Place of death of older persons with dementia. A study in five European countries. J Am Geriatr Soc 2010, 58:751-756.
• [11]Mitchell SL, Miller SC, Teno JM, Kiely DK, Davis RB, Shaffer ML: Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA 2010, 304:1929-1935.
• [12]van der Steen JT, Mitchell SL, Frijters DH, Kruse RL, Ribbe MW: Prediction of 6-month mortality in nursing home residents with advanced dementia: validity of a risk score. J Am Med Dir Assoc 2007, 8:464-468.
• [13]Brandt HE, Ooms ME, Deliens L, van der Wal G, Ribbe MW: The last two days of life of nursing home patients–a nationwide study on causes of death and burdensome symptoms in The Netherlands. Palliat Med 2006, 20:533-540.
• [14]Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, Volicer L, Givens JL, Hamel MB: The clinical course of advanced dementia. N Engl J Med 2009, 361:1529-1538.
• [15]Koopmans RT, van der Sterren KJ, van der Steen JT: The 'natural' endpoint of dementia: death from cachexia or dehydration following palliative care? Int J Geriatr Psychiatry 2007, 22:350-355.
• [16]Ellershaw J, Smith C, Overill S, Walker SE, Aldridge J: Care of the dying: setting standards for symptom control in the last 48 hours of life. J Pain Symptom Manage 2001, 21:12-17.
• [17]Klinkenberg M, Willems DL, van der Wal G, Deeg DJ: Symptom burden in the last week of life. J Pain Symptom Manage 2004, 27:5-13.
• [18]Hendriks SA, Smalbrugge M, Hertogh CM, van der Steen JT: Dying with dementia: symptoms, treatment, and quality of life in the last week of life. J Pain Symptom Manage 2014, 47:710-720.
• [19]van Soest-Poortvliet MC, van der Steen JT, Zimmerman S, Cohen LW, Reed D, Achterberg WP, Ribbe MW, de Vet HC: Selecting the best instruments to measure quality of end-of-life care and quality of dying in long term care. J Am Med Dir Assoc 2013, 14:179-186.
• [20]Vandervoort A, Van den Block L, van der Steen JT, Volicer L, Stichele RV, Houttekier D, Deliens L: Nursing home residents dying with dementia in Flanders, Belgium: a nationwide postmortem study on clinical characteristics and quality of dying. J Am Med Dir Assoc 2013, 14:485-492.
• [21]Mitchell SL, Kiely DK, Hamel MB: Dying with advanced dementia in the nursing home. Arch Intern Med 2004, 164:321-326.
• [22]Lamberg JL, Person CJ, Kiely DK, Mitchell SL: Decisions to hospitalize nursing home residents dying with advanced dementia. J Am Geriatr Soc 2005, 53:1396-1401.
• [23]Albrecht JS, Gruber-Baldini AL, Fromme EK, McGregor JC, Lee DS, Furuno JP: Quality of hospice care for individuals with dementia. J Am Geriatr Soc 2013, 61:1060-1065.
• [24]Mitchell SL, Black BS, Ersek M, Hanson LC, Miller SC, Sachs GA, Teno JM, Morrison RS: Advanced dementia: state of the art and priorities for the next decade. Ann Intern Med 2012, 156:45-51.
• [25]Shega JW, Hougham GW, Stocking CB, Cox-Hayley D, Sachs GA: Barriers to limiting the practice of feeding tube placement in advanced dementia. J Palliat Med 2003, 6:885-893.
• [26]Brody H, Hermer LD, Scott LD, Grumbles LL, Kutac JE, McCammon SD: Artificial nutrition and hydration: the evolution of ethics, evidence, and policy. J Gen Intern Med 2011, 26:1053-1058.
• [27]Brandt HE, Deliens L, Ooms ME, van der Steen JT, van der Wal G, Ribbe MW: Symptoms, signs, problems, and diseases of terminally ill nursing home patients: a nationwide observational study in The Netherlands. Arch Intern Med 2005, 165:314-320.
• [28]van Soest-Poortvliet MC, van der Steen JT, Zimmerman S, Cohen LW, Munn J, Achterberg WP, Ribbe MW, de Vet HC: Measuring the quality of dying and quality of care when dying in long-term care settings: a qualitative content analysis of available instruments. J Pain Symptom Manage 2011, 42:852-863.
• [29]van Soest-Poortvliet MC, van der Steen JT, Zimmerman S, Cohen LW, Klapwijk MS, Bezemer M, Achterberg WP, Knol DL, Ribbe MW, de Vet HC: Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia. Qual Life Res 2012, 21:671-684.
• [30]van der Steen JT, Ooms ME, van der Wal G, Ribbe MW: Withholding or starting antibiotic treatment in patients with dementia and pneumonia: prediction of mortality with physicians' judgment of illness severity and with specific prognostic models. Med Decis Making 2005, 25:210-221.
• [31]Herr K, Bursch H, Ersek M, Miller LL, Swafford K: Use of pain-behavioral assessment tools in the nursing home: expert consensus recommendations for practice. J Gerontol Nurs 2010, 36:18-29.
• [32]Warden V, Hurley AC, Volicer L: Development and psychometric evaluation of the pain assessment in advanced dementia (PAINAD) scale. J Am Med Dir Assoc 2003, 4:9-15.
• [33]Zwakhalen SM, Hamers JP, Abu-Saad HH, Berger MP: Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools. BMC Geriatr 2006, 6:3. BioMed Central Full Text
• [34]Zwakhalen SM, van der Steen JT, Najim MD: Which score most likely represents pain on the observational PAINAD pain scale for patients with dementia? J Am Med Dir Assoc 2012, 13:384-389.
• [35]Schalkwijk D, Verlare LR, Muller MT, Knol DL, van der Steen JT: [Measuring quality of life in nursing home residents with severe dementia: psychometric properties of the QUALID scale]. Tijdschr Gerontol Geriatr 2009, 40:184-192.
• [36]Hurley AC, Volicer BJ, Hanrahan PA, Houde S, Volicer L: Assessment of discomfort in advanced Alzheimer patients. Res Nurs Health 1992, 15:369-377.
• [37]Hoogendoorn LI, Kamp S, Mahomed CA, Ader HJ, Ooms ME, van der Steen JT: [The role of observer for the reliability of dutch version of the discomfort scale-dementia of alzheimer type (DS-DAT)]. Tijdschr Gerontol Geriatr 2001, 32:117-121.
• [38]van der Steen JT, Gijsberts MJ, Knol DL, Deliens L, Muller MT: Ratings of symptoms and comfort in dementia patients at the end of life: comparison of nurses and families. Palliat Med 2009, 23:317-324.
• [39]Volicer L, Hurley AC, Blasi ZV: Scales for evaluation of end-of-life care in dementia. Alzheimer Dis Assoc Disord 2001, 15:194-200.
• [40]Aminoff BZ, Purits E, Noy S, Adunsky A: Measuring the suffering of end-stage dementia: reliability and validity of the mini-suffering state examination. Arch Gerontol Geriatr 2004, 38:123-130.
• [41]Schols R, Schipper R: De Mini Suffering State Exam (MSSE) onderzocht in een Nederlangs verpleeghuis. [The Mini-Suffering State Exam (MSSE) has been studied in a Dutch nursing home]. Tijdschrift voor Verpleeghuisgeneeskunde, Dutch 2003, 27:14-18.
• [42]Morris JN, Fries BE, Mehr DR, Hawes C, Phillips C, Mor V, Lipsitz LA: MDS cognitive performance scale. J Gerontol 1994, 49:M174-M182.
• [43]Appollonio I, Gori C, Riva G, Spiga D, Ferrari A, Ferrarese C, Frattola L: Assessing early to late stage dementia: the TSI and BANS-S scales in the nursing-home. Int J Geriatr Psychiatry 2005, 20:1138-1145.
• [44]Volicer L, Hurley AC, Lathi DC, Kowall NW: Measurement of severity in advanced Alzheimer's disease. J Gerontol 1994, 49:M223-M226.
• [45]van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, Francke AL, Junger S, Gove D, Firthe P, Koopmans RT, Volicer L: White paper defining optimal palliative care in older people with dementia: a delphi study and recommendations from the European association for palliative care. Palliat Med 2014, 28:197-209.
• [46]Bach PB, Schrag D, Begg CB: Resurrecting treatment histories of dead patients: a study design that should be laid to rest. JAMA 2004, 292:2765-2770.
• [47]Earle CC, Ayanian JZ: Looking back from death: the value of retrospective studies of end-of-life care. J Clin Oncol 2006, 24:838-840.
• [48]Helton MR, Cohen LW, Zimmerman S, van der Steen JT: The importance of physician presence in nursing homes for residents with dementia and pneumonia. J Am Med Dir Assoc 2011, 12:68-73.
• [49]van der Steen JT, Pasman HR, Ribbe MW, van der Wal G, Onwuteaka-Philipsen BD: Discomfort in dementia patients dying from pneumonia and its relief by antibiotics. Scand J Infect Dis 2009, 41:143-151.
• [50]Onwuteaka-Philipsen BD, Brinkman-Stoppelenburg A, Penning C, de Jong-Krul GJ, van Delden JJ, van der Heide A: Trends in end-of-life practices before and after the enactment of the euthanasia law in The Netherlands from 1990 to 2010: a repeated cross-sectional survey. Lancet 2012, 380:908-915.