Advertisement

Supportive Care in Cancer

, Volume 26, Issue 1, pp 261–267 | Cite as

Beyond death and dying: how Chinese spouses navigate the final days with their loved ones suffering from terminal cancer

  • B. P. M. Chung
  • D. Leung
  • S. M. Leung
  • A. Y. LokeEmail author
Original Article

Abstract

While advances in biomedicine exist for cancer, its diagnosis and treatment still bring the threat of mortality to the forefront of spouses’ lives. Family conflict is largely due to unmet expectations that generate a lot of physical and emotional distress for spouses, as the primary surrogates. Moreover, older individuals in Hong Kong tend to lack control of where they die and who is present at the end of their lives. Deeper understanding of Chinese spouses’ perspectives is needed to generate new insights, particularly in how spouses cope with caregiving. The aim of the study was to explore the Chinese spousal experience with their dying loved ones suffering from terminal cancer. A qualitative study using interpretive description was conducted. Spousal caregivers were purposively recruited through a hospice unit of two regional hospitals in Hong Kong, China. Documentary sources were used as secondary data. Fifteen individuals, consisting of seven men and eight women, participated in individual interviews. The overarching theme was a socially constructed “we” experience of confronting mortality, characterized by five subthemes: (a) balancing end-of-life tension between cure and comfort, (b) prioritizing the family goals and concerns, (c) de-medicalizing caregiving, (d) working for mutuality, and (e) creating a legacy of love. The study suggests that clinicians might consider harnessing the capacity of spouses to help work through confronting experiences of mortality and transforming events for goals that go beyond death. This places a major emphasis on salutary strategies surrounding transitions from curative to palliative care.

Keywords

Death and dying Terminal cancer Mortality Spouse Caregiving 

Notes

Acknowledgements

The research team wishes to acknowledge the contribution of the study participants. We thank them who generously shared their time and experience for the purpose of this study.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

References

  1. 1.
    Bruera E, Hui D (2010) Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care. J Clin Oncol 28:4013–4017CrossRefGoogle Scholar
  2. 2.
    Sabo B (2014) Waiting and liminality: a phenomenon of spousal caregiving? Cancer Nurs 37:184–188CrossRefGoogle Scholar
  3. 3.
    World Health Organization (2014) First ever global atlas identifies unmet need for palliative care. http://www.who.int/mediacentre/news/releases/2014/palliative-care-20140128/en/. Accessed 09 Sep 2015
  4. 4.
    White D, Cua S, Walk R, Pollice L, Weissfeld L, Hong S et al (2012) Nurse-led Intervention to improve surrogate decision-making for patients with advanced critical illness. Am J Crit Care 21:396–409CrossRefGoogle Scholar
  5. 5.
    Milbury K, Badr H, Fossella F, Pisters KM, Carmack CL (2013) Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer. Support Care Cancer 21:2371–2379CrossRefGoogle Scholar
  6. 6.
    Li Q, Loke AY (2013) A spectrum of hidden morbidities among spousal caregivers for patients with cancer, and differences between the genders: a review of the literature. Eur J Oncol Nurs 17:578–587CrossRefGoogle Scholar
  7. 7.
    Milbury K, Badr H, Fossella F, Pisters KM, Carmack CL (2013) Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer. Support Care Cancer 21:2371–2379CrossRefGoogle Scholar
  8. 8.
    Digiacomo M, Lewis J, Nolan MT, Phillips J, Davidson PM (2013) Transitioning from caregiving to widowhood. J Pain Symptom Manag 46:817–825CrossRefGoogle Scholar
  9. 9.
    Li QP, Mak YW, Loke AY (2013) Spouses’ experience of caregiving for cancer patients: a literature review. Int Nurs Rev 60:178–187CrossRefGoogle Scholar
  10. 10.
    Bruera E, Hui D. (2010). Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care. Journal of Clinical Oncology 28: 4013–4017CrossRefGoogle Scholar
  11. 11.
    Tang ST, Liu TW, Lai MS, Liu LN, Chen CH, Koong SL (2006) Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan. Cancer Investig 24:360–366CrossRefGoogle Scholar
  12. 12.
    Chan C (2009). The Chinese death taboo. In Bryant D, Peck, D (eds.) Encyclopedia of death and the human experience, v. 1, Sage, Calif, pp. 190–192Google Scholar
  13. 13.
    Luk J, Liu A, Beh P, Chan F (2011) End of life care in Hong Kong. Asian J Gerontol Geriatr 6:103–106Google Scholar
  14. 14.
    Thorne S, Reimer Kirkham S, O’Flynn-Magee K (2004) The analytic challenge in interpretative description. Int J Qual Methods 3:1–21CrossRefGoogle Scholar
  15. 15.
    Thorne S, Reimer Kirkham S, MacDonald-Emes J (1997) Interpretative description: a non-categorical qualitative alternative for developing nursing knowledge. Res Nurs Health 2:169–177CrossRefGoogle Scholar
  16. 16.
    Thorne S (1997) Completing a qualitative project: details and dialogue. In: Morse J (ed) The art and science of critiquing qualitative research. Sage, Calif, pp 117–132Google Scholar
  17. 17.
    Folkman S (1997) Positive psychological states and coping with severe stress. Soc Sci Med 45:1207–1221CrossRefGoogle Scholar
  18. 18.
    QRS International, NVivo 10 2016 Retrieved from: http://www.qsrinternational.com/ Accessed 11 Dec 2015
  19. 19.
    Bertero (2015) Developing qualitative methods- or “same old wine in a new bottle”. Int J Qual Stud Health Well-being 10:27679CrossRefGoogle Scholar
  20. 20.
    Li Q, Loke AY (2013) The positive aspects of caregiving for cancer patients: a critical review of the literature and directions for future research. Psycho-Oncology 22:2399–2407CrossRefGoogle Scholar
  21. 21.
    Zhang Z, Chen M, Gu X, Liu M, Cheng W (2015) Cultural and ethical considerations for cardiopulmonary resuscitation in Chinese patients with cancer at the end of life. Am J Hosp Palliat Med 32:210–215CrossRefGoogle Scholar
  22. 22.
    Hack T, McClement S, Chochinov H, Cann B, Hassard T, Kristjanson L, Harlos M (2010) Learning from dying patients during their final days: life reflections gleaned from dignity therapy. Palliat Med 24:715–723CrossRefGoogle Scholar
  23. 23.
    Moore A, Patterson C, Nair K, Oliver D, Brown A, Keating P, Riva J (2015) Minding the gap: prioritization of care issues among nurse practitioners, family physicians and geriatricians when caring for the elderly. J Interprofessional Care 29:401–403CrossRefGoogle Scholar
  24. 24.
    Wilson L, Moskowitz, J, Acree M, Heyman, M, Harmatz P, Ferrando A, et al (2005). The economic burden of home care for children with HIV and other chronic illnesses. American Journal of Public Health 95:1445–1452CrossRefGoogle Scholar
  25. 25.
    Milberg A, Strang P (2007) What to do when ‘there is nothing more to do’? A study within a salutogenic framework of family members’ experience of palliative home care staff. Psycho-Oncology 16:741–751CrossRefGoogle Scholar
  26. 26.
    van Brummen B, Griffiths L (2013) Working in a medicalized world: the experiences of palliative care nurse specialists and midwives. Int J Palliat Nurs 19:85–91CrossRefGoogle Scholar
  27. 27.
    Folkman S (2008) The case for positive emotions in the stress process. Anxiety, stress and coping 21: 3–14CrossRefGoogle Scholar
  28. 28.
    Tugade M, Fredrickson B (2004) Resilent indiviudals use positive emotions to bounce back from negative emotional experiences. J Pers Soc Psychol 86:320–333CrossRefGoogle Scholar
  29. 29.
    Kramer K (2005) You cannot die alone: Dr. Elisabeth Kuber Ross. OMEGA 50:83–101Google Scholar
  30. 30.
    Forsund L, Kiik R, Skovdahl K, Ytrehus S (2016) Constructing togetherness throughout the phases of dementia: a qualitative study exploring how spouses maintain relationships with partners with dementia who live in institutional care. J Clin Nurs 25:3010–3025CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany 2017

Authors and Affiliations

  • B. P. M. Chung
    • 1
  • D. Leung
    • 1
    • 2
  • S. M. Leung
    • 3
  • A. Y. Loke
    • 1
    Email author
  1. 1.School of NursingThe Hong Kong Polytechnic UniversityHong KongChina
  2. 2.Lawrence S. Bloomberg Faculty of Nursing, University of TorontoTorontoCanada
  3. 3.School of Nursing, Caritas Medical CentreHong KongChina

Personalised recommendations