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Supportive Care in Cancer

, Volume 25, Issue 4, pp 1229–1236 | Cite as

Caring at home until death: enabled determination

  • Carole A. RobinsonEmail author
  • Joan L. Bottorff
  • Erin McFee
  • Laura J. Bissell
  • Gillian Fyles
Original Article

Abstract

Purpose

The importance of family caregivers in providing palliative care at home and in supporting a home death is well supported. Gaining a better understanding of what enables palliative family caregivers to continue caring at home for their family members until death is critical to providing direction for more effective support. The purpose of the study was to describe the experiences of bereaved family caregivers whose terminally ill family members with advanced cancer were successful in achieving a desired home death.

Method

A qualitative interpretive descriptive approach was used. Data were collected using semi-structured, audio-recorded interviews conducted in-person or via telephone in addition to field notes and reflective journaling. The study took place in British Columbia, Canada, and included 29 bereaved adult family caregivers who had provided care for a family member with advanced cancer and experienced a home death.

Results

Four themes captured the experience of caring at home until death: context of providing care, supportive antecedents to providing care, determination to provide care at home, and enabled determination. Factors that enabled determination to achieve a home death included initiation of formal palliative care, asking for and receiving help, augmented care, relief or respite, and making the healthcare system work for the ill person.

Conclusions

Clarifying caregiving goals and supporting the factors that enable caregiver determination appear to be critical in enhancing the likelihood of a desired home death.

Keywords

Family caregivers Lay carers Home death 

Notes

Acknowledgments

The authors thank the British Columbia Cancer Foundation (no. 62R17410) for the grant that funded this research.

Compliance with ethical standards

Conflict of interest

The authors received grant funding from the British Columbia Cancer Foundation (no. 62R17410) for this research. None of the authors have competing financial interests or a financial relationship with the sponsoring agency. Dr. Robinson has full control of all primary data and agrees to allow the journal to review the data if requested.

References

  1. 1.
    Stajduhar KI, Davies B (2005) Variations in and factors influencing family members’ decision for palliative home care. Palliat Med 19:21–32. doi: 10.1191/0269216305pm963oa CrossRefPubMedGoogle Scholar
  2. 2.
    Hansford P, Meehan H (2007) Gold standard framework: improving community care. End of Life Care 3:56–61. doi: 10.1136/eolc-01-03.9 CrossRefGoogle Scholar
  3. 3.
    Fukui S, Yoshiuchi K, Fujita J, Sawai M, Watanabe M (2011) Japanese people’s preference for place of end-of-life care and death: a population-based nationwide survey. J Pain Symptom Manag 42:882–892. doi: 10.1016/j.jpainsymman.2011.02.024 CrossRefGoogle Scholar
  4. 4.
    Wilson DM, Cohen J, Deliens L, Hewitt JA, Houttekier D (2013) The preferred place of last days: results of a representative population-based public survey. J Palliat Med 16:502–508. doi: 10.1089/jpm.2012.0262 CrossRefPubMedGoogle Scholar
  5. 5.
    Hales S, Chiu A, Husain A, Braun M, Rydall A, Gagliese L, Zimmermann C, Rodin G (2014) The quality of dying and death in cancer and its relationship to palliative care and place of death. J Pain Symptom Manag 48:839–851. doi: 10.1016/j.jpainsymman.2013.12.240 CrossRefGoogle Scholar
  6. 6.
    Kinoshita H, Maeda I, Morita T et al (2015) Place of death and the differences in patient quality of death and dying and caregiver burden. J Clin Oncol 33:357–363. doi: 10.1200/JCO.2014.55.7355 CrossRefPubMedGoogle Scholar
  7. 7.
    Gomes B, Calanzani N, Koffman J, Higginson IJ (2015) Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Med 13:235. doi: 10.1186/s12916-015-0466-5 CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Sadler E, Hales B, Henry B et al (2014) Factors affecting family satisfaction with inpatient end-of-life care. PLoS One 9:e110860. doi: 10.1371/journal.pone.0110860 CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Statistics Canada (2015). Table 102–0509—deaths in hospital and elsewhere, Canada, provinces and territories, annual in: CANSIM (database). http://www5.statcan.gc.ca/cansim/a47. Accessed 18 April 2016
  10. 10.
    Canadian Hospice Palliative Care Association (2010). Hospice palliative care fact sheet. Ottawa, Ontario. Retrieved from: http://www.chpca.net/media/7622/fact_sheet_hpc_in_canada_march_2013_final.pdf
  11. 11.
    Dunbrack J (2005) The informational needs of informal caregivers involved in providing support to a critically ill loved one. A synthesis report prepared for Health Canada. Retrieved from: http://www.hc-sc.gc.ca/hcs-sss/pubs/home-domicile/2005-info-caregiver-aidant/index-eng.php#a6
  12. 12.
    Fisker T, Strandmark M (2007) Experiences of surviving spouse of terminally ill spouse: a phenomenological study of an altruistic perspective. Scand J Caring Sci 21:274–281. doi: 10.1111/j.1471-6712.2007.00466.x CrossRefPubMedGoogle Scholar
  13. 13.
    Dumont I, Dumont S, Mongeau S (2008) End-of-life care and the grieving process: family caregivers who have experienced the loss of a terminal-phase cancer patient. Qual Health Res 18:1049–1061. doi: 10.1177/1049732308320110 CrossRefPubMedGoogle Scholar
  14. 14.
    Seow H, Brazil K, Sussman J et al (2014) Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis. BMJ 348:g3496. doi: 10.1136/bmj.g3496 CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Canadian Cancer Society: Right to care: Palliative care for all Canadians (2016). https://www.cancer.ca/~/media/cancer.ca/CW/get%20involved/take%20action/Palliative-care-report-2016-EN.pdf?la=en Accessed July 5, 2016
  16. 16.
    Ceci C (2006) ‘What she says she needs doesn’t make a lot of sense’: seeing and knowing in a field study of home-care case management. Nurs Philos 7:90–99. doi: 10.1111/j.1466-769X.2004.00258.x CrossRefPubMedGoogle Scholar
  17. 17.
    Cherlin E, Fried T, Prigerson HG, Schulman-Green D, Johnson-Hurzeler R, Bradley EH (2005) Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said? J Palliat Med 8:1176–1185. doi: 10.1089/jpm.2005.8.1176 CrossRefPubMedPubMedCentralGoogle Scholar
  18. 18.
    Egan KA, Horvath G (2006) Family caregiving in the last years of life: positive experiences in the midst of suffering. Home Healthc Nurse 24:554–558CrossRefGoogle Scholar
  19. 19.
    Evans WG, Cutson TM, Steinhauser KE, Tulky JA (2006) Is there no place like home? Caregivers recall reasons for and experience upon transfer from home hospice to inpatient facilities. J Pall Med 9:100–110. doi: 10.1089/jpm.2006.9.100 CrossRefGoogle Scholar
  20. 20.
    Holmberg L (2006) Communication in action between family caregivers and a palliative home care team. J Hosp Palliat Nurs 8:276–287CrossRefGoogle Scholar
  21. 21.
    Munck B, Fridlund B, Martensson J (2008) Next-of-kin caregivers in palliative home care—from control to loss of control. J Adv Nurs 64:578–586. doi: 10.1111/j.1365-2648.2008.04819.x CrossRefPubMedGoogle Scholar
  22. 22.
    Robinson CA, Pesut B, Bottorff JL (2012) Supporting rural family palliative caregivers. J Fam Nurs 18:467–490. doi: 10.1177/1074840712462065 CrossRefPubMedGoogle Scholar
  23. 23.
    Stajduhar KI, Funk L, Toye C, Grande GE, Aoun S, Todd CJ (2010) Part 1: home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008). Palliat Med 24:573–593. doi: 10.1177/0269216310371412 CrossRefPubMedGoogle Scholar
  24. 24.
    Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ (2010) Part 2: home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008). Palliat Med 24:594–607. doi: 10.1177/0269216310371411 CrossRefPubMedGoogle Scholar
  25. 25.
    Strang VR, Koop PM (2003) Factors which influence coping: home-based family caregiving of persons with advanced cancer. J Palliat Care 19:107–114CrossRefGoogle Scholar
  26. 26.
    Vickers JL, Carlisle C (2000) Choices and control: parental experiences in pediatric terminal home care. J Pediatr Oncol Nurs 17:12–21. doi: 10.1177/104345420001700103 CrossRefPubMedGoogle Scholar
  27. 27.
    Grande G, Stajduhar K, Aoun S, Toye C, Funk L, Addington-Hall J, Payne S, Todd C (2009) Supporting lay carers in end of life care: current gaps and future priorities. Palliat Med 23:339–344. doi: 10.1177/0269216309104875 CrossRefPubMedGoogle Scholar
  28. 28.
    Topf L, Robinson CA, Bottorff JL (2013) When a desired home death does not occur: the consequences of broken promises. J Palliat Med 16:875–880. doi: 10.1089/jpm.2012.0541 CrossRefPubMedGoogle Scholar
  29. 29.
    Lees C, Mayland C, West A, Germaine A (2014) Quality of end-of-life care for those who die at home: views and experiences of bereaved relatives and carers. Int J Palliat Nurs 20:63–67CrossRefGoogle Scholar
  30. 30.
    Gomes B, Higginson IJ (2006) Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 332:515–521. doi: 10.1136/bmj.38740.614954.55 CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
    Maida V (2002) Factors that promote success in home palliative care: a study of a large suburban palliative care practice. J Palliat Care 18:282–286CrossRefGoogle Scholar
  32. 32.
    Thorne S (2008) Interpretive description. Left Coast Press, Walnut Creek, CAGoogle Scholar
  33. 33.
    Thorne S, Reimer Kirkham S, MacDonald-Emes J (1997) Interpretive description: a noncategorical qualitative alternative for developing nursing knowledge. Res Nurs Health 20:169–177. doi: 10.1002/(SICI)1098-240X(199704)20:2<169::AID-NUR9>3.0.CO;2-I CrossRefPubMedGoogle Scholar
  34. 34.
    Zhang B, El-Jawahri A, Prigerson HG (2006) Update on bereavement research: evidence-based guidelines for the diagnosis and treatment of complicated bereavement. J Palliat Med 9:1188–1203. doi: 10.1089/jpm.2006.9.1188 CrossRefPubMedGoogle Scholar
  35. 35.
    Shear KM, Jackson CT, Essock SM, Donahue SA, Felton CJ (2006) Screening for complicated grief among project liberty service recipients 18 months after September 11, 2001. Psychiat Serv 57:1291–1297CrossRefGoogle Scholar
  36. 36.
    Ghesquiere A, Shear MK, Gesi C, Kahler J, Belnap BH, Mazumdar S, He F, Rollman BL (2012) Prevalence and correlates of complicated grief in adults who have undergone a coronary artery bypass graft. J Affect Disorders 136:381–385. doi: 10.1016/j.jad.2011.11.018 CrossRefPubMedGoogle Scholar
  37. 37.
    Ito M, Nakajima S, Fujisawa D, Miyashita M, Kim Y, Shear K, Ghesquiere A, Wall MM (2012) Brief measure for screening complicated grief: reliability and discriminant validity. PLoS One 7:e31209. doi: 10.1371/journal.pone.0031209 CrossRefPubMedPubMedCentralGoogle Scholar
  38. 38.
    Thorne S, Reimer Kirkham S, O’Flynn-Magee K (2004) The analytic challenge in interpretive description. Int J Qual Methods 3:1–11. doi: 10.1177/160940690400300101 CrossRefGoogle Scholar
  39. 39.
    McPherson G, Thorne S (2006) Exploiting exceptions to enhance interpretive qualitative health research: insights from a study of cancer communication. Int J Qual Methods 5:73–86. doi: 10.1177/160940690600500210 CrossRefGoogle Scholar
  40. 40.
    Robinson CA (2016) Trust, health care relationships, and chronic illness: a theoretical coalescence. Glob Qual Nurs Res 3:1–11. doi: 10.1177/2333393616664823 CrossRefGoogle Scholar
  41. 41.
    Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ, de Brito M (2016) Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Sao Paulo Med J 134:93–94. doi: 10.1002/14651858.CD007760.pub2/abstract CrossRefGoogle Scholar
  42. 42.
    Mangan PA, Taylor KL, Yabroff KR, Fleming DA, Ingham JM (2003) Caregiving near the end of life: unmet needs and potential solutions. Palliat Support Care 1:247–259. doi: 10.1017/S1478951503030414 CrossRefPubMedGoogle Scholar
  43. 43.
    Aoun S, Toye C, Deas K, Howting D, Ewing G, Grande G, Stajduhar K (2015) Enabling a family caregiver-led assessment of support needs in home-based palliative care: potential translation into practice. Palliat Med 29:929–938. doi: 10.1177/0269216315583436 CrossRefGoogle Scholar
  44. 44.
    Robinson C, Bottorff JL, Pesut B, Zerr J (2015) Development of a decision support guide for family palliative caregivers: moving evidence into practice. Cancer Nurs 38(4S):S19Google Scholar
  45. 45.
    Robinson CA, Pesut B, Bottorff JL (2015) A family caregiver decision guide. University of British Columbia, Kelowna, BC Retrieved from http://hdl.handle.net/2429/59786 Google Scholar
  46. 46.
    McCaffrey N, Agar M, Harlum J, Karnon J, Currow D, Eckermann S (2013) Is home-based palliative care cost-effective? An economic evaluation of the palliative care extended packages at home (PEACH) pilot. BMJ Support Palliat Care 3:431–435. doi: 10.1136/bmjspcare-2012-000361 CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2016

Authors and Affiliations

  • Carole A. Robinson
    • 1
    Email author
  • Joan L. Bottorff
    • 2
  • Erin McFee
    • 3
  • Laura J. Bissell
    • 4
  • Gillian Fyles
    • 5
  1. 1.School of NursingUniversity of British ColumbiaKelownaCanada
  2. 2.School of NursingUniversity of British ColumbiaKelownaCanada
  3. 3.School of NursingUniversity of British ColumbiaKelownaCanada
  4. 4.College of Graduate StudiesUniversity of British ColumbiaKelownaCanada
  5. 5.British Columbia Cancer AgencySindi Ahluwalia Hawkins Centre for the Southern InteriorKelownaCanada

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