Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Original Article
  • Published:

Qol and Patients' Care

Advance care planning among hematopoietic cell transplant patients and bereaved caregivers

Bone Marrow Transplantation volume 49, pages 1317–1322 (2014)Cite this article

Subjects

Abstract

Younger, healthier patients contemplating high-risk (but potentially curative) hematopoietic cell transplants (HCT) may not consider advance care planning (ACP). We investigated the effect of pre transplant ACP in surviving HCT patients and bereaved caregivers using retrospective, audiotaped telephone surveys. Subjects were identified between 2001 and 2003 via databases at two high-volume HCT centers. Transcripts were coded by two investigators, with differences resolved by consensus. HCT survivors (n=18) were interviewed a median of 13 months after HCT for acute leukemia (7), lymphoma (5) or other (6); 50% had living wills, 72% had a formal proxy. Twelve (67%) had discussed mortality risk pre HCT with the medical team. Of those, 92% felt their hope and perception of the medical team’s truthfulness was increased or unchanged (I/U) by the conversation, whereas all felt clinician commitment to transplant was I/U. Bereaved caregivers (n=11) were interviewed a median of 10 months post death (median 31 days post HCT, range 13–152). Nine (82%) had discussed mortality risk pre-HCT with the medical team; 7 (78%) felt hope was I/U, all felt clinician commitment to transplant and truthfulness was I/U, and most felt ACP reduced burden (67%). ACP discussions with patients and caregivers pre-HCT did not affect hope and supported confidence in medical teams.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Similar content being viewed by others

References

  1. Weissman DE . Decision making at a time of crisis near the end of life. JAMA 2004; 292: 1738–1743.

    Article  CAS  Google Scholar 

  2. Dow LA, Matsuyama RK, Ramakrishnan V, Kuhn L, Lamont EB, Lyckholm L et al. Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives. J Clin Oncol 2010; 28: 299–304.

    Article  CAS  Google Scholar 

  3. Fu S, Barber FD, Naing A, Wheler J, Hong D, Falchook G et al. Advance care planning in patients with cancer referred to a phase I clinical trials program: the MD anderson cancer center experience. J Clin Oncol 2012; 30: 2891–2896.

    Article  Google Scholar 

  4. O'Toole E, Step MM, Engelhardt K, Lewis S, Rose JH . The role of primary care physicians in advanced cancer care: perspectives of older patients and their oncologists. J Am Geriatr Soc 2009; 57 (Suppl 2): S265–S268.

    Article  Google Scholar 

  5. Saraiya B, Bodnar-Deren S, Leventhal E, Leventhal H . End-of-life planning and its relevance for patients’ and oncologists’ decisions in choosing cancer therapy. Cancer 2008; 113 (12 Suppl): 3540–3547.

    Article  Google Scholar 

  6. Temel JS, Greer JA, Admane S, Solis J, Cashavelly BJ, Doherty S et al. Code status documentation in the outpatient electronic medical records of patients with metastatic cancer. J Gen Intern Med. 2010; 25: 150–153.

    Article  Google Scholar 

  7. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300: 1665–1673.

    Article  CAS  Google Scholar 

  8. Duckworth KE, Forti AM, Russell GB, Naik S, Hurd DD, McQuellon RP . Hematopoietic stem cell transplant candidate and designated proxy distress levels prior to hematopoietic stem cell transplantation. Am J Hosp Palliat Care (e-pub ahead of print 17 October 2013; doi:10.1177/1049909113508217).

  9. Ganti AK, Lee SJ, Vose JM, Devetten MP, Bociek RG, Armitage JO et al. Outcomes after hematopoietic stem-cell transplantation for hematologic malignancies in patients with or without advance care planning. J Clin Oncol 2007; 25: 5643–5648.

    Article  Google Scholar 

  10. Joffe S, Mello MM, Cook EF, Lee SJ . Advance care planning in patients undergoing hematopoietic cell transplantation. Biol Blood Marrow Transplant 2007; 13: 65–73.

    Article  Google Scholar 

  11. Loberiza FR Jr., Swore-Fletcher BA, Block SD, Back AL, Goldman RE, Tulsky JA et al. Coping styles, health status and advance care planning in patients with hematologic malignancies. Leuk Lymphoma 2011; 52: 2342–2348.

    Article  Google Scholar 

  12. Cho B-S, Yoon J-H, Shin S-H, Yahng S-A, Lee S-E, Eom K-S et al. Comparison of allogeneic stem cell transplantation from familial-mismatched/haploidentical donors and from unrelated donors in adults with high-risk acute myelogenous leukemia. Biol Blood Marrow Transplant 2012; 18: 1552–1563.

    Article  Google Scholar 

  13. Eapen M, Rocha V, Sanz G, Scaradavou A, Zhang M-J, Arcese W et al. Effect of graft source on unrelated donor haemopoietic stem-cell transplantation in adults with acute leukaemia: a retrospective analysis. Lancet Oncol 2010; 11: 653–660.

    Article  Google Scholar 

  14. Ferrara F, Schiffer CA . Acute myeloid leukaemia in adults. Lancet 2013; 381: 484–495.

    Article  Google Scholar 

  15. Jakubowski AA, Small TN, Kernan NA, Castro-Malaspina H, Collins N, Koehne G et al. T cell–depleted unrelated donor stem cell transplantation provides favorable disease-free survival for adults with hematologic malignancies. Biol Blood Marrow Transplant 2011; 17: 1335–1342.

    Article  Google Scholar 

  16. Laughlin MJ, Eapen M, Rubinstein P, Wagner JE, Zhang M-J, Champlin RE et al. Outcomes after transplantation of cord blood or bone marrow from unrelated donors in adults with leukemia. New Engl J Med 2004; 351: 2265–2275.

    Article  CAS  Google Scholar 

  17. Majhail NS, Brazauskas R, Hassebroek A, Bredeson CN, Hahn T, Hale GA et al. Outcomes of allogeneic hematopoietic cell transplantation for adolescent and young adults compared with children and older adults with acute myeloid leukemia. Biol Blood Marrow Transplant 2012; 18: 861–873.

    Article  Google Scholar 

  18. Valcárcel D, Sierra J, Wang T, Kan F, Gupta V, Hale GA et al. One-antigen mismatched related versus HLA-matched unrelated donor hematopoietic stem cell transplantation in adults with acute leukemia: Center for International Blood and Marrow Transplant Research results in the era of molecular HLA typing. Biol Blood Marrow Transplant 2011; 17: 640–648.

    Article  Google Scholar 

  19. William BM, de Lima M . Advances in conditioning regimens for older adults undergoing allogeneic stem cell transplantation to treat hematologic malignancies. Drugs Aging 2013; 30: 373–381.

    Article  CAS  Google Scholar 

  20. Armeson KE, Hill EG, Costa LJ . Tandem autologous vs autologous plus reduced intensity allogeneic transplantation in the upfront management of multiple myeloma: meta-analysis of trials with biological assignment. Bone Marrow Transplant 2013; 48: 562–567.

    Article  CAS  Google Scholar 

  21. Björkstrand B, Iacobelli S, Hegenbart U, Gruber A, Greinix H, Volin L et al. Tandem autologous/reduced-intensity conditioning allogeneic stem-cell transplantation versus autologous transplantation in myeloma: long-term follow-up. J Clin Oncol 2011; 29: 3016–3022.

    Article  Google Scholar 

  22. Hahn T, McCarthy PL, Carreras J, Zhang M-J, Lazarus HM, Laport GG et al. Simplified validated prognostic model for progression-free survival after autologous transplantation for Hodgkin lymphoma∗. Biol Blood Marrow Transplant 2013; 19: 1740–1744.

    Article  Google Scholar 

  23. Stiff PJ, Unger JM, Cook JR, Constine LS, Couban S, Stewart DA et al. Autologous transplantation as consolidation for aggressive non-Hodgkin’s lymphoma. N Engl J Med 2013; 369: 1681–1690.

    Article  CAS  Google Scholar 

  24. Child JA, Morgan GJ, Davies FE, Owen RG, Bell SE, Hawkins K et al. High-dose chemotherapy with hematopoietic stem-cell rescue for multiple myeloma. N Engl J Med 2003; 348: 1875–1883.

    Article  CAS  Google Scholar 

  25. Serna DS, Lee SJ, Zhang M, Baker KS, Eapen M, Horowitz MM et al. Trends in survival rates after allogeneic hematopoietic stem-cell transplantation for acute and chronic leukemia by ethnicity in the United States and Canada. J Clin Oncol 2003; 21: 3754–3760.

    Article  Google Scholar 

  26. Baker KS, Davies SM, Majhail NS, Hassebroek A, Klein JP, Ballen KK et al. Race and socioeconomic status influence outcomes of unrelated donor hematopoietic cell transplantation. Biol Blood Marrow Transplant 2009; 15: 1543–1554.

    Article  Google Scholar 

  27. Hahn T, Hassebroek A, Bredeson C, Gajewski JL, Hale GA, Isola LM et al. Significant improvement in survival after allogeneic hematopoietic cell transplantation during a period of significantly increased use, older recipient age, and use of unrelated donors. J Clin Oncol 2013; 31: 2437–2449.

    Article  Google Scholar 

  28. McCarthy PL, Hahn T, Hassebroek A, Bredeson C, Gajewski J, Hale G et al. Trends in use of and survival after autologous hematopoietic cell transplantation in North America, 1995–2005: significant improvement in survival for lymphoma and myeloma during a period of increasing recipient age. Biol Blood Marrow Transplant 2013; 19: 1116–1123.

    Article  Google Scholar 

  29. Fife BL, Huster GA, Cornetta KG, Kennedy VN, Akard LP, Broun ER . Longitudinal study of adaptation to the stress of bone marrow transplantation. J Clin Oncol 2000; 18: 1539–1549.

    Article  CAS  Google Scholar 

  30. Grulke N, Bailer H, Kächele H, Bunjes D . Psychological distress of patients undergoing intensified conditioning with radioimmunotherapy prior to allogeneic stem cell transplantation. Bone Marrow Transplant 2005; 35: 1107–1111.

    Article  CAS  Google Scholar 

  31. Mytko JJ, Knight SJ, Chastain D, Mumby PB, Siston AK, Williams S . Coping strategies and psychological distress in cancer patients before autologous bone marrow transplant. J Clin Psychol Med Settings 1996; 3: 355–366.

    Article  CAS  Google Scholar 

  32. Heinonen H, Volin L, Zevon MA, Uutela A, Barrick C, Ruutu T . Stress among allogeneic bone marrow transplantation patients. Patient Educ Couns 2005; 56: 62–71.

    Article  Google Scholar 

  33. Lee SJ, Loberiza FR, Rizzo JD, Soiffer RJ, Antin JH, Weeks JC . Optimistic expectations and survival after hematopoietic stem cell transplantation. Biol Blood Marrow Transplant 2003; 9: 389–396.

    Article  Google Scholar 

  34. Lee SJ, Fairclough D, Antin JH, Weeks JC . Discrepancies between patient and physician estimates for the success of stem cell transplantation. JAMA 2001; 285: 1034–1038.

    Article  CAS  Google Scholar 

  35. Teno JM, Clarridge B, Casey V, Edgman-Levitan S, Fowler J, Teno JM et al. Toolkit After-Death Bereaved Family Member Interview. J Pain Symptom Manage 2001; 22: 752–758.

    Article  CAS  Google Scholar 

  36. Chang VT, Hwang SS, Feuerman M . Validation of the Edmonton Symptom Assessment Scale. Cancer 2000; 88: 2164–2171.

    Article  CAS  Google Scholar 

  37. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP . SPIKES—a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000; 5: 302–311.

    Article  CAS  Google Scholar 

  38. Ustun C, Bachanova V, Shanley R, Macmillan ML, Majhail NS, Arora M et al. Importance of donor ethnicity/race matching in unrelated adult and cord blood allogeneic hematopoietic cell transplantation. Leuk Lymphoma 2013; 55: 358–364.

    Article  Google Scholar 

Download references

Acknowledgements

This work was supported by grant CA 098486, PI: Stephanie Lee.

Author information

Authors and Affiliations

  1. Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA

    E T Loggers, S Lee & K Chilson

  2. Group Health Research Institute, Group Health Co-operative, Seattle, WA, USA

    E T Loggers

  3. Medical Oncology, University of Washington, Seattle, WA, USA

    S Lee & A L Back

  4. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA

    S Block

  5. Division of Oncology/Hematology, University of Nebraska Medical Center, Omaha, NE, USA

    F R Loberiza

Authors
  1. E T Loggers
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. S Lee
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. K Chilson
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. A L Back
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. S Block
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. F R Loberiza
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to E T Loggers.

Ethics declarations

Competing interests

The authors declare no conflict of interest.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Loggers, E., Lee, S., Chilson, K. et al. Advance care planning among hematopoietic cell transplant patients and bereaved caregivers. Bone Marrow Transplant 49, 1317–1322 (2014). https://doi.org/10.1038/bmt.2014.152

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/bmt.2014.152

This article is cited by

Search

Advanced search

Quick links