Abstract
The process of dying is the final crisis in human life. Older persons can die in different places: at home, in a hospital, a long-term care facility, or in a hospice. Although the environment influences the process of dying, the basic experience is the same: life irrevocably ends and its meaning is called into question by death. Furthermore, possibilities of life prolongation force older persons to decide about their end-of-life care and to think about death in advance. This chapter summarizes the findings of 93 qualitative studies that explored older persons’ experiences with advance care planning and their process of dying. Quality of life in the process of dying will depend on how older persons are able to cope with this final crisis. They may die with inner peace and serenity if they find an appropriate balance between an attachment to and a detachment from life, between denial and awareness of impending death, and between scepticism and hope. Nurses and caregivers can accompany them in this process by attentive listening which allows the dying persons to communicate their final needs.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Andersson M, Hallberg IR, Edberg A-K (2008) Old people receiving municipal care, their experiences of what constitutes a good life in the last phase of life: a qualitative study. Int J Nurs Stud 45:818–828
Aoun S, O’Connor M, Skett K, Deas K, Smith J (2012) Do models of care designed for terminally ill ‘home alone’ people improve their end-of-life experience? A patient perspective. Health Soc Care Community 20:599–606
Baeke G, Wils J-P, Broeckaert B (2011) We are (not) the master of our body: elderly Jewish women’s attitudes towards euthanasia and assisted suicide. Ethn Health 16:259–278
Ball MM, Kemp CL, Hollingsworth C, Perkins MM (2014) “This is our last stop”: negotiating end-of-life transitions in assisted living. J Aging Stud 30:1–13
Barclay S, Froggatt K, Crang C, Mathie E, Handley M, Iliffe S, Manthorpe J, Gage H & Goodman C (2014) Living in uncertain times. Trajectories to death in residential care homes. The British journal of general practice: the journal of the Royal College of General Practitioners 64, e576-83.
Becker G (2002) Dying away from home. Quandaries of migration for elders in two ethnic groups. J Gerontol B Psychol Sci Soc Sci 57:79–95
Bélanger E, Rodríguez C, Groleau D, Légaré F, MacDonald ME, Marchand R (2016) Patient participation in palliative care decisions: an ethnographic discourse analysis. Int J Qual Stud Health Well Being 11:32438
Benzein E, Norberg A, Saveman BI (2001) The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliat Med 15:117–126
Blackhall LJ, Frank G, Murphy ST, Michel V, Palmer JM, Azen SP (1999) Ethnicity and attitudes towards life sustaining technology. Soc Sci Med 48:1779–1789
Bollig G, Gjengedal E, Rosland JH (2016) They know!-Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes. Palliat Med 30:456–470
Broeckaert B (2009) Treatment decisions in advanced disease: a conceptual framework. Indian J Palliat Care 15(1):30–36
Cable-Williams B, Wilson D (2014) Awareness of impending death for residents of long-term care facilities. Int J Older People Nursing 9:169–179
Carrese JA, Mullaney JL, Faden RR, Finucane TE (2002) Planning for death but not serious future illness: qualitative study of housebound elderly patients. BMJ 325:125
Cartwright J, Kayser-Jones J (2003) End-of-life care in assisted living facilities: perceptions of residents, families, and staffs. J Hosp Palliat Nurs 5:143–151
Chan J, Kayser-Jones J (2005) The experience of dying for Chinese nursing home residents: cultural considerations. J Gerontol Nurs 31:26–32
Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M (2002) Dignity in the terminally ill: a developing empirical model. Soc Sci Med 54:433–443
Coelho A, Parola V, Escobar-Bravo M, Apóstolo J (2016) Comfort experience in palliative care: a phenomenological study. BMC Palliat Care 15:71
Dees MK, Vernooij-Dassen MJ, Dekkers WJ, Vissers KC, van Weel C (2011) ‘Unbearable suffering’: a qualitative study on the perspectives of patients who request assistance in dying. J Med Ethics 37:727–734
Devik SA, Enmarker I, Wiik GB, Hellzèn O (2013) Meanings of being old, living on one’s own and suffering from incurable cancer in rural Norway. Eur J Oncol Nurs 17:781–787
Devik SA, Hellzèn O, Enmarker I (2015) Picking up the pieces. Int J Qual Stud Health Well Being 10:28382
Duggleby W (2000) Elderly hospice cancer patients’ descriptions of their pain experiences. Am J Hosp Palliat Care 17:111–117
Duggleby W, Wright K (2004) Elderly palliative care cancer patients’ descriptions of hope-fostering strategies. Int J Palliat Nurs 10:352–359
Duggleby W, Cooper D, Nekolaichuk C, Cottrell L, Swindle J, Barkway K (2016) The psychosocial experiences of older palliative patients while participating in a Living with Hope Program. Palliat Support Care 14:672–679
Eckemoff EH, Sudha S, Wang D (2018) End of life care for older Russian immigrants - perspectives of Russian immigrants and hospice staff. J Cross Cult Gerontol 33:229–245
El-Jawahri A, Traeger L, Shin JA, Knight H, Mirabeau-Beale K, Fishbein J, Vandusen HH, Jackson VA, Volandes AE, Temel JS (2017) Qualitative study of patients’ and caregivers’ perceptions and information preferences about hospice. J Palliat Med 20:759–766
Engle VF, Fox-Hill E, Graney MJ (1998) The experience of living-dying in a nursing home: self-reports of black and white older adults. J Am Geriatr Soc 46:1091–1096
Farber SJ, Egnew TR, Herman-Bertsch JL, Taylor TR, Guldin GE (2003) Issues in end-of-life care: patient, caregiver, and clinician perceptions. J Palliat Med 6:19–31
Fleming J, Farquhar M, Brayne C, Barclay S (2016) Death and the oldest old: attitudes and preferences for end-of-life care. qualitative research within a population-based cohort study. PLoS One 11:e0150686
Forbes S (2001) This is Heaven’s waiting room: end of life in one nursing home. J Gerontol Nurs 27:37–45
Frank G, Blackhall LJ, Michel V, Murphy ST, Azen SP, Park K (1998) A discourse of relationships in bioethics. Patient autonomy and end-of-life decision making among elderly Korean Americans. Med Anthropol Q 12:403–423
Franklin LL, Ternestedt BM, Nordenfelt L (2006) Views on dignity of elderly nursing home residents. Nurs Ethics 13:130–146
Fried TR, Bradley EH (2003) What matters to seriously ill older persons making end-of-life treatment decisions? A qualitative study. J Palliat Med 6:237–244
Fried TR, van Doorn C, O’Leary JR, Tinetti ME, Drickamer MA (1999) Older persons’ preferences for site of terminal care. Ann Intern Med 131:109–112
Friedrichsen M, Lindholm A, Milberg A (2011) Experiences of truth disclosure in terminally ill cancer patients in palliative home care. Palliat Support Care 9:173–180
Froggatt KA, Wilson D, Justice C, MacAdam M, Leibovici K, Kinch J, Thomas R, Choi J (2006) End-of-life care in long-term care settings for older people: a literature review. Int J Older People Nursing 1:45–50
Gjerberg E, Lillemoen L, Førde R, Pedersen R (2015) End-of-life care communications and shared decision-making in Norwegian nursing homes--experiences and perspectives of patients and relatives. BMC Geriatr 15:103
Glaser BG, Strauss AL (1968) Time for dying. Aldine, New York
Gott M, Seymour J, Bellamy G, Clark D, Ahmedzai S (2004) Older people’s views about home as a place of care at the end of life. Palliat Med 18:460–467
Gubrium JF (1997) Living and dying at Murray Manor. University Press of Virginia, Charlottesville
Hall S, Goddard C, Speck P, Higginson IJ (2013) It makes me feel that I’m still relevant: a qualitative study of the views of nursing home residents on dignity therapy and taking part in a phase II randomised controlled trial of a palliative care psychotherapy. Palliat Med 27:358–366
Hanratty B, Holmes L, Lowson E, Grande G, Addington-Hall J, Payne S, Seymour J (2012) Older adults’ experiences of transitions between care settings at the end of life in England: a qualitative interview study. J Pain Symptom Manag 44:74–83
Haug SHK, Danbolt LJ, Kvigne K, Demarinis V (2015) How older people with incurable cancer experience daily living: a qualitative study from Norway. Palliat Support Care 13:1037–1048
Haug SHK, Danbolt LJ, Kvigne K, Demarinis V (2016) Older people with incurable cancer: existential meaning-making from a life-span perspective. Palliat Support Care 14:20–32
Hermann CP (2001) Spiritual needs of dying patients: a qualitative study. Oncol Nurs Forum 28:67–72
Hilário AP (2016) In-patient hospice: a qualitative study with Portuguese patients, family and staff. Death Stud 40:290–297
Hirakawa Y, Chiang C, Hilawe EH, Aoyama A (2017) Content of advance care planning among Japanese elderly people living at home: a qualitative study. Arch Gerontol Geriatr 70:162–168
Ho AHY, Chan CLW, Leung PPY, Chochinov HM, Neimeyer RA, Pang SMC, Tse DMW (2013) Living and dying with dignity in Chinese society: perspectives of older palliative care patients in Hong Kong. Age Ageing 42:455–461
Horne G, Seymour J, Shepherd K (2006) Advance care planning for patients with inoperable lung cancer. Int J Palliat Nurs 12:172–178
Hospice Foundation of America (2018) Retrieved March 20, 2019 from https://hospicefoundation.org/Hospice-Care/Hospice-Services
Hospice UK (2019) What is hospice care? Retrieved March 20, 2019 from https://www.hospiceuk.org/about-hospice-care/what-is-hospice-care
Jack BA, Mitchell TK, Cope LC & O’Brien MR (2016) Supporting older people with cancer and life-limiting conditions dying at home. A qualitative study of patient and family caregiver experiences of Hospice at Home care. Journal of advanced nursing 72, 2162–2172.
Jarrett NJ, Payne SA, Wiles RA (1999) Terminally ill patients’ and lay-carers’ perceptions and experiences of community-based services. J Adv Nurs 29:476–483
Kayser-Jones J (2002) The experience of dying: an ethnographic nursing home study. The Gerontologist 42(3):11–19
Kayser-Jones J, Schell E, Lyons W, Kris AE, Chan J, Beard RL (2003) Factors that influence end-of-life care in nursing homes: the physical environment, inadequate staffing, and lack of supervision. The Gerontologist 43:76–84
Kelner M (1995) Activists and delegators: elderly patients’ preferences about control at the end of life. Soc Sci Med 41:537–545
Ko E, Kwak J, Nelson-Becker H (2015) What constitutes a good and bad death?: perspectives of homeless older adults. Death Stud 39:422–432
Krau SD (2016) The difference between palliative care and end of life care. more than semantics. Nurs Clin North Am 51:ix–ix
Kübler-Ross E (2014) On death and dying. Scribner, New York
Laakkonen ML, Pitkala KH, Strandberg TE (2004) Terminally ill, elderly patient’s experiences, attitudes, and needs: a qualitative study. Omega 49:117–129
Lambert HC, McColl MA, Gilbert J, Wong J, Murray G, Shortt SED (2005) Factors affecting long-term-care residents’ decision-making processes as they formulate advance directives. The Gerontologist 45:626–633
Lee H-TS, Cheng S-C, Dai Y-T, Chang M, Hu W-Y (2016) Cultural perspectives of older nursing home residents regarding signing their own DNR directives in Eastern Taiwan: a qualitative pilot study. BMC Palliat Care 15:45
Leichtentritt RD, Rettig KD (1999) Meanings and attitudes toward end-of-life preferences in Israel. Death Stud 23:323–358
Leichtentritt RD, Rettig KD (2000) The good death: reaching an inductive understanding. Omega 41:221–248
Lewis ET, Harrison R, Hanly L, Psirides A, Zammit A, McFarland K, Dawson A, Hillman K, Barr M, Cardona M (2019) End-of-life priorities of older adults with terminal illness and caregivers: a qualitative consultation. Health Expect 22:405–414. https://doi.org/10.1111/hex.12860
MacArtney JI, Broom A, Kirby E, Good P, Wootton J, Yates PM, Adams J (2015) On resilience and acceptance in the transition to palliative care at the end of life. Health 19:263–279
MacArtney JI, Broom A, Kirby E, Good P, Wootton J, Adams J (2016) Locating care at the end of life: burden, vulnerability, and the practical accomplishment of dying. Sociol Health Illn 38:479–492
MacArtney JI, Broom A, Kirby E, Good P, Wootton J (2017) The liminal and the parallax. living and dying at the end of life. Qual Health Res 27:623–633
Malcomson H, Bisbee S (2009) Perspectives of healthy elders on advance care planning. J Am Acad Nurse Pract 21:18–23
Malpas PJ, Wilson MKR, Rae N, Johnson M (2014) Why do older people oppose physician-assisted dying? A qualitative study. Palliat Med 28:353–359
Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med, 6 (7), e1000097
Mulqueen K, Coffey A (2017) Preferences of residents with dementia for end of life care. Nurs Older People 29:26–30
Munn JC, Dobbs D, Meier A, Williams CS, Biola H, Zimmerman S (2008) The end-of-life experience in long-term care: five themes identified from focus groups with residents, family members, and staff. The Gerontologist 48:485–494
Nebel Pederson S, Emmers-Sommer TM (2012) I’m not trying to be cured, so there’s not much he can do for me: hospice patients’ constructions of hospice’s holistic care approach in a biomedical culture. Death Stud 36:419–446
Nelson-Becker HB (2006) Voices of resilience: older adults in hospice care. J Soc Work End Life Palliat Care 2:87–106
Ott BB (2008) Views of African American Nursing Home residents about living wills. Geriatr Nurs 29:117–124
Phillips K, Woodward V (1999) The decision to resuscitate: older people’s views. J Clin Nurs 8:753–761
Richardson J (2002) Health promotion in palliative care: the patients’ perception of therapeutic interaction with the palliative nurse in the primary care setting. J Adv Nurs 40:432–440
Rietjens JAC, Sudore RL, Connolly M, van Delden JJ, Drickamer MA, Droger M, van der Heide A, Heyland DK, Houttekier D, Janssen DJA, Orsi L, Payne S, Seymour J, Jox RJ, Korfage IJ, European Association for Palliative Care (2017) Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol 18(9):e543–e551
Romo RD, Allison TA, Smith AK, Wallhagen MI (2017) Sense of control in end-of-life decision-making. J Am Geriatr Soc 65:e70–e75
Rosenfeld KE, Wenger NS, Kagawa-Singer M (2000) End-of-life decision making: a qualitative study of elderly individuals. J Gen Intern Med 15:620–625
Rurup ML, Pasman HRW, Goedhart J, Deeg DJH, Kerkhof AJFM, Onwuteaka-Philipsen BD (2011) Understanding why older people develop a wish to die: a qualitative interview study. Crisis 32:204–216
Ryan PY (2005) Approaching death: a phenomenologic study of five older adults with advanced cancer. Oncol Nurs Forum 32:1101–1108
Seymour J (2003) Technology and “natural death”: a study of older people. Zeitschrift fur Gerontologie und Geriatrie 36:339–346
Seymour J, Almack K, Kennedy S (2010) Implementing advance care planning: a qualitative study of community nurses’ views and experiences. BMC Palliat Care 9(1):4. Retrieved from http://www.biomedcentral.com/1472-684X/9/4
Shield RR (1988) Uneasy endings. daily life in an American nursing home. Cornell University Press, Ithaca
Skolnick AA (1998) MediCaring: project to demonstrate, evaluate innovative end-of life program for chronically ill. JAMA 279:511–1512
Steinhauser K, Christakis N, Clipp E, McNeilly M, McIntyre L, Tulsky J (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284:2476–2482
Thoresen L, Lillemoen L (2016) “I just think that we should be informed” a qualitative study of family involvement in advance care planning in nursing homes. BMC Med Ethics 17:72
Thoresen L, Ahlzén R, Solbrække KN (2016) Advance Care Planning in Norwegian nursing homes-who is it for? J Aging Stud 38:16–26
Tishelman C, Lindqvist O, Hajdarevic S, Rasmussen BH, Goliath I (2016) Beyond the visual and verbal: using participant-produced photographs in research on the surroundings for care at the end-of-life. Soc Sci Med 168:120–129
Todd A, Holmes H, Pearson S, Hughes C, Andrew I, Baker L, Husband A (2016) ‘I don’t think I’d be frightened if the statins went’: a phenomenological qualitative study exploring medicines use in palliative care patients, carers and healthcare professionals. BMC Palliat Care 15:13
Towsley GL, Hirschman KB (2018) Talking about end-of-life care: perspectives of nursing home residents. Geriatr Nurs 39:72–76
Towsley GL, Hirschman KB, Madden C (2015) Conversations about end of life: perspectives of nursing home residents, family, and staff. J Palliat Med 18:421–428
van Leuven K (2011) Advance care planning in healthy older adults. Calif J Health Promot 9:6–14
van Wijngaarden E, Leget C, Goossensen A (2015) Ready to give up on life: the lived experience of elderly people who feel life is completed and no longer worth living. Soc Sci Med 138:257–264
van Wijngaarden E, Leget C, Goossensen A (2016a) Caught between intending and doing: older people ideating on a self-chosen death. BMJ Open 6:e009895
van Wijngaarden E, Leget C, Goossensen A (2016b) Till death do us part: the lived experience of an elderly couple who chose to end their lives by spousal self-euthanasia. The Gerontologist 56:1062–1071
Venkatasalu MR, Seymour JE, Arthur A (2014) Dying at home: a qualitative study of the perspectives of older South Asians living in the United Kingdom. Palliat Med 28:264–272
Vig EK, Pearlman RA (2003) Quality of life while dying: a qualitative study of terminally ill older men. J Am Geriatr Soc 51:1595–1601
Vig EK, Pearlman RA (2004) Good and bad dying from the perspective of terminally ill men. Arch Intern Med 164:977–981
Vig EK, Davenport NA, Pearlman RA (2002) Good deaths, bad deaths, and preferences for the end of life: a qualitative study of geriatric outpatients. J Am Geriatr Soc 50:1541–1548
Waldrop DP, Meeker MA (2012) Hospice decision making: diagnosis makes a difference. The Gerontologist 52:686–697
Waldrop DP, Meeker MA (2014) Final decisions: how hospice enrollment prompts meaningful choices about life closure. Palliat Support Care 12:211–221
Warmenhoven F, Lucassen P, Vermandere M, Aertgeerts B, van Weel C, Vissers K, Prins J (2016) ‘Life is still worth living’: a pilot exploration of self-reported resources of palliative care patients. BMC Fam Pract 17:52
Whitaker A (2010) The body as existential midpoint—the aging and dying body of nursing home residents. J Aging Stud 24:96–104
WHO (2014) WHO definition of palliative care. Retrieved March 20, 2019 from http://www.who.int/cancer/palliative/definition/en/
Wilson DM (2000) End-of-life care preferences of Canadian senior citizens with caregiving experience. J Adv Nurs 31:1416–1421
Winland-Brown JE (1998) Death, denial, and defeat: older patients and advance directives. Adv Pract Nurs Q 4:36–40
Yap SS, Chen K, Detering KM, Fraser SA (2018) Exploring the knowledge, attitudes and needs of advance care planning in older Chinese Australians. J Clin Nurs 27:3298–3306
Young AJ, Ofori-Boateng T, Rodriguez KL, Plowman JL (2003) Meaning and agency in discussing end-of-life care: a study of elderly veterans’ values and interpretations. Qual Health Res 13:1039–1062
Zaborowski H (2019) Die Würde des Menschen, die Fragilität des Glücks und die Sorge für den Anderen. In: Proft I, Zaborowski H (eds) Gesundheit – Das höchste Gut? Herder, Freiburg
Author information
Authors and Affiliations
Rights and permissions
Copyright information
© 2020 Springer Nature Switzerland AG
About this chapter
Cite this chapter
Boggatz, T. (2020). Quality of Life in the Process of Dying. In: Quality of Life and Person-Centered Care for Older People. Springer, Cham. https://doi.org/10.1007/978-3-030-29990-3_6
Download citation
DOI: https://doi.org/10.1007/978-3-030-29990-3_6
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-030-29989-7
Online ISBN: 978-3-030-29990-3
eBook Packages: MedicineMedicine (R0)