Supportive Care in Cancer

, Volume 26, Issue 3, pp 921–931 | Cite as

Early integration of palliative cancer care: patients’ and caregivers’ challenges, treatment preferences, and knowledge of illness and treatment throughout the cancer trajectory

  • Martina PreislerEmail author
  • Silke Heuse
  • Manuel Riemer
  • Friederike Kendel
  • Anne Letsch
Original Article



Early integration of palliative care (EIPC) into oncology is beneficial for cancer patients and their caregivers. Best practice models of EIPC throughout the course of cancer treatment aim to support patients and caregivers in meeting their individual needs. So far, we know little about whether EIPC offers should be phase-specific or patient-centered. This study investigated patients’ and caregivers’ needs considering individual challenges, treatment preferences, and knowledge over the cancer trajectory.


Semi-structured qualitative interviews and pre-interview questionnaires were conducted with 11 cancer patients and 9 caregivers. A modified grounded theory approach was used to analyze the interview data applying thematic analysis and reflective principles by using MAXQDA.


Our data showed no clearly distinct pattern of illness-phase-specific needs of patients and caregivers. Support needs were dependent on the significance and interpretation of events by patients and caregivers. Mastering challenges was highly individual and influenced by personal and contextual factors. Our results showed that subjective theories of illness significantly influenced experience, information requirements, treatment preferences, and the feeling of patients and caregivers “to be in good hands.” The physician-patient relationship was of central relevance and has a major gatekeeper function for EIPC. Access to the medical care system, resources, and information appeared to be based on chance.


For optimal EIPC, it is necessary to improve structural conditions such as more structured information about resources and procedures. Subjective theories of illness need to be continuously considered by practitioners in order to recognize the individual need for support.


Cancer Palliative care Needs Cancer trajectory Patients Caregivers 


Compliance with ethical standards

The study was approved by the Research Ethics Committee of Charité University medicine, Germany (No. EA1/079/14).

Conflict of interest

The authors declare that they have no conflicts of interest.


  1. 1.
    Temel JS, Greer JA, Muzikansky A et al (2013) Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med 363:733–742.
  2. 2.
    Zimmermann C, Swami N, Krzyzanowska M et al (2014) Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet 383:1721–1730. CrossRefPubMedGoogle Scholar
  3. 3.
    Bakitas M, Lyons KD, Hegel MT, Bakitas M (2009) Effects of a palliative care intervention. doi:
  4. 4.
    Greer JA, Pirl WF, Jackson VA et al (2012) Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non–small-cell lung cancer. J Clin Oncol 30:394–400. CrossRefPubMedGoogle Scholar
  5. 5.
    Kavalieratos D, Corbelli J, Zhang D et al (2016) Association between palliative care and patient and caregiver outcomes. JAMA 316:2104. CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Rugno FC, Paiva BSR, Paiva CE (2014) Early integration of palliative care facilitates the discontinuation of anticancer treatment in women with advanced breast or gynecologic cancers. Gynecol Oncol 135:249–254. CrossRefPubMedGoogle Scholar
  7. 7.
    Smith TJ, Temin S, Alesi ER et al (2012) American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 30:880–887. CrossRefPubMedGoogle Scholar
  8. 8.
    Cherny N, Catane R, Schrijvers D et al (2010) European Society for Medical Oncology (ESMO) program for the integration of oncology and palliative care: a 5-year review of the designated centers’ incentive program. Ann Oncol 21:362–369. CrossRefPubMedGoogle Scholar
  9. 9.
    Ferrell BR, Temel JS, Temin S et al (2016) Integration of palliative care into standard oncology care: american society of clinical oncology clinical practice guideline update. J Clin Oncol.
  10. 10.
    World Health Organization (2012) WHO definition of palliative care. In: WHO. Accessed 13 Apr 2017
  11. 11.
    Ramchandran K, Tribett E, Dietrich B, Von Roenn J (2015) Integrating palliative care into oncology: a way forward. Cancer Control 22:386–395CrossRefPubMedGoogle Scholar
  12. 12.
    Hui D, Bruera E (2016) Integrating palliative care into the trajectory of cancer care. Nat Rev Clin Oncol 13:159–171. CrossRefPubMedGoogle Scholar
  13. 13.
    Hui D, Bansal S, Strasser F et al (2015) Indicators of integration of oncology and palliative care programs: an international consensus. Ann Oncol 26:1953–1959. CrossRefPubMedPubMedCentralGoogle Scholar
  14. 14.
    Hui D, Kim YJ, Park JC et al (2015) Integration of oncology and palliative care: a systematic review. Oncologist 20:77–83. CrossRefPubMedGoogle Scholar
  15. 15.
    Zhi WI, Smith TJ (2015) Early integration of palliative care into oncology: evidence, challenges and barriers. Ann Palliat Med 4:122–131. PubMedGoogle Scholar
  16. 16.
    Peppercorn JM, Smith TJ, Helft PR et al (2011) American Society of Clinical Oncology Statement: toward individualized care for patients with advanced cancer. J Clin Oncol 29:755–760. CrossRefPubMedGoogle Scholar
  17. 17.
    Ford E, Catt S, Chalmers A, Fallowfield L (2012) Systematic review of supportive care needs in patients with primary malignant brain tumors. Neuro-Oncology 14:392–404. CrossRefPubMedPubMedCentralGoogle Scholar
  18. 18.
    Schenker Y, Park SY, Maciasz R, Arnold RM (2014) Do patients with advanced cancer and unmet palliative care needs have an interest in receiving palliative care services? J Palliat Med 17:667–672. CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Hara REO, Hull JG, Lyons KD et al (2010) Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer. Palliat Support Care 8:395–404. CrossRefGoogle Scholar
  20. 20.
    Given BA, Given CW, Sherwood PR (2012) Family and caregiver needs over the course of the cancer trajectory. J Support Oncol 10:57–64. CrossRefPubMedGoogle Scholar
  21. 21.
    Glajchen M (2004) The emerging role and needs of family caregivers in cancer care. J Support Oncol 2:145–155PubMedGoogle Scholar
  22. 22.
    Hudson PL, Aranda S, Kristjanson LJ (2004) Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals. J Palliat Med 7:19–25. CrossRefPubMedGoogle Scholar
  23. 23.
    Fried TR, Bradley EH, Towle VR, Allore H (2002) Understanding the treatment preferences of seriously ill patients. N Engl J Med 346:1061–1066. CrossRefPubMedGoogle Scholar
  24. 24.
    Hinchey J, Goldberg J, Linsky S et al (2016) Knowledge of cancer stage among women with nonmetastatic breast cancer. J Palliat Med 19:314–317. CrossRefPubMedGoogle Scholar
  25. 25.
    Soylu C, Babacan T, Sever AR, Altundag K (2016) Patients’ understanding of treatment goals and disease course and their relationship with optimism, hope, and quality of life: a preliminary study among advanced breast cancer outpatients before receiving palliative treatment. Support Care Cancer 24:3481–3488. CrossRefPubMedGoogle Scholar
  26. 26.
    Bauman JR, Temel JS (2014) The integration of early palliative care with oncology care: The time has come for a new tradition. JNCCN J Natl Compr Cancer Netw 12:1763–1771CrossRefGoogle Scholar
  27. 27.
    Muckel P (2011) Die Entwicklung von Kategorien mit der Methode der Grounded Theory. In: Historical Social Research, Supplement, 19, p 211–231.
  28. 28.
    Corbin JM, Strauss AL (2014) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Sage Publications Ltd. 4th Edition. RevisedGoogle Scholar
  29. 29.
    Strauss AL, Corbin JM (1996) Grounded theory: Grundlagen qualitativer Sozialforschung. PsychologieVerlagsUnion, BeltzGoogle Scholar
  30. 30.
    Gaertner J, Wolf J, Hallek M et al (2011) Standardizing integration of palliative care into comprehensive cancer therapy—a disease specific approach. Support Care Cancer 19:1037–1043. CrossRefPubMedGoogle Scholar
  31. 31.
    Corbin JM, Strauss AL (2004) Weiterleben lernen : Verlauf und Bewältigung chronischer Krankheit. Verlag Hans HuberGoogle Scholar
  32. 32.
    Kaasa S, Knudsen AK, Lundeby T, Loge JH (2017) Integration between oncology and palliative care: a plan for the next decade? Tumori J 103. doi:
  33. 33.
    Ferrell BR, Temel JS, Temin S, et al (2016) Integration of palliative care into standard oncology care: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol 35. doi:
  34. 34.
    Verres R (1986) Subjektive Krankheitstheorie und Angst. In: Krebs und Angst (ed) Spezielle Aspekte bezüglich der Krebsvorsorge und Krebsfrüherkennung. Springer, Berlin, pp 50–56Google Scholar
  35. 35.
    Flick U (1998) Subjektive Vorstellungen von Gesundheit und Krankheit: Überblick und Einleitung. In: Flick, U (ed): Wann fühlen wir uns gesund? Subjektive Vorstellungen von Gesundheit und Krankheit. Weinheim:Juventa Verlag, p 7–30.
  36. 36.
    Parsons T (1951) The social system. Free Press, New YorkGoogle Scholar
  37. 37.
    Berglund M, Westin L, Svanström R, Sundler AJ (2012) Suffering caused by care-patients’ experiences from hospital settings. Int J Qual Stud Health Well Being 7:1–9. CrossRefPubMedGoogle Scholar
  38. 38.
    Case DO, Andrews JE, Johnson JD, Allard SL (2005) Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. J Med Libr Assoc 93:353–362PubMedPubMedCentralGoogle Scholar
  39. 39.
    Murray SA, Kendall M, Mitchell G et al (2017) Palliative care from diagnosis to death. BMJ 356:1–5. Google Scholar
  40. 40.
    Rohrmoser A, Preisler M, Bär K et al (2017) Early integration of palliative/supportive cancer care—healthcare professionals’ perspectives on the support needs of cancer patients and their caregivers across the cancer treatment trajectory. Support Care Cancer 25:1621–1627. CrossRefPubMedGoogle Scholar
  41. 41.
    Kaba R, Sooriakumaran P (2007) The evolution of the doctor-patient relationship. Int J Surg 5:57–65. CrossRefPubMedGoogle Scholar
  42. 42.
    Munhoz BA, Paiva HS, Abdalla BMZ et al (2014) From one side to the other: what is essential? Perception of oncology patients and their caregivers in the beginning of oncology treatment and in palliative care. Einstein (São Paulo) 12:485–491. CrossRefGoogle Scholar
  43. 43.
    German guideline program in oncology evidenced-based guideline: palliative care for patients with incurable cancer. Short version. May 2015, URL: February 2017 Awmf 1–268
  44. 44.
    Arora NK (2003) Interacting with cancer patients: the significance of physicians’ communication behavior. Soc Sci Med 57:791–806. CrossRefPubMedGoogle Scholar
  45. 45.
    Hui D, Park M, Liu D et al (2015) Attitudes and beliefs toward supportive and palliative care referral among hematologic and solid tumor oncology specialists. Oncologist 20:1–7. CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany 2017

Authors and Affiliations

  1. 1.Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Medical Department, Division of Hematology and OncologyCampus Benjamin FranklinBerlinGermany
  2. 2.Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of HealthInstitute of Medical Psychology, Campus MitteBerlinGermany
  3. 3.Centre for Community Research Learning and ActionWilfrid Laurier UniversityWaterlooCanada

Personalised recommendations