Nurses play key role in providing holistic care for haematology patients

Nurses, now more than ever, have a key role to play in providing holistic care for haematology patients and improving palliative and end-of-life care for relapsed transplant patients, writes Haematology and bone marrow transplant nurse Elise Button.
FEATURE STORY
Every year over 11,000 Australians are diagnosed with a haematological malignancy or disorder ¹. This includes diseases such as leukaemia, lymphoma, myeloma, myelodysplastic syndrome and myeloproliferative neoplasms. While these diseases differ in presentation, prognosis and management, they share a common origin arising from abnormal blood and bone marrow cells. Often time allogeneic stem cell transplantation provides the only possible chance of remission and long term survival ². This therapy aims to transplant a new immune system into a person by infusing stem cells from a human donor, after a conditioning regime of chemotherapy and often times radiation. Sources of stem cells used for allogeneic transplantation can be from siblings or unrelated donors. Bone marrow suppression from the underlying disease, chemotherapy and conditioning regimes for the transplantation process, causes haematology patients to be heavily reliant on red blood cell and platelet transfusions for long periods of time ².
Approximately 400 allogeneic stem cell transplants are performed in Australia every year ¹. Although much progress has been made in the field of haematology and stem cell transplantation, relapse of the original malignancy is still the leading cause of death ³. The Centre for International Blood and Morrow Transplant Research reports relapse-associated morality ranges from 33 - 47% following allogeneic transplantation ⁴. Post a relapse, there are limited treatment options and little chance for long-term survival. People who undergo allogeneic stem cell transplantation are relatively young, fit, and have previously demonstrated a willingness to pursue aggressive life prolonging treatment. Significant challenges exist transitioning from curative to palliative treatment for these patients and providing gold standard end-of-life care.

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“Early integration of palliative care is becoming increasingly recommended and is associated with improved patient satisfaction, increased quality of life, decreased symptoms, greater choice over place of death and reduced distress in bereaved family caregivers.”
ELISE BUTTON

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Palliative care
Palliative care aims to improve the quality of life of patients and their families living with a life limiting illness, through the prevention and relief of suffering ⁵.
The palliative care approach focuses on early identification and exceptional assessment of physical, psychosocial and spiritual symptoms. It is often misunderstood that palliative care is end-of-life care. However, palliative care can be provided at any stage of an illness, often concurrently with disease modifying or curative therapy. Most major hospitals in Australia have a specialist palliative care service, which consists of a multi-disciplinary team of medical and nursing staff that work alongside the patient’s treating team.
Early integration of palliative care is becoming increasingly recommended and is associated with improved patient satisfaction, increased quality of life, decreased symptoms, greater choice over place of death and reduced distress in bereaved family caregivers. Early involvement of palliative care services in lung cancer patients has been shown to lead to a reduction in aggressive treatments near the end of life and longer survival times compared to standard treatment ^6,7.
There is scant literature available regarding palliative and end of life care provision for relapsed allogeneic stem cell transplant patients. The vast majority of research has focused on improving survival times and controlling complications. The broader literature demonstrates palliative care has not been successfully int grated into the haematology setting ⁸.
Haematology patients have lower referral rates to palliative care services and are more likely to die in hospital compared to patients with solid cancers. Some of the barriers in providing palliative care include; an overwhelming focus on cure, lack of or late referrals to specialist palliative care services, unpredictable disease trajectory, rapid decline to a terminal event, unclear goals of care, and practical problems working with palliative care services ⁸. People who relapse following stem cell transplantation have obvious palliative care needs as they have limited time remaining to live. Earlier palliative care integration in this population would allow for open honest discussions about death and dying and advanced planning. Advanced planning provides patients more autonomy over place of death, limitations on treatment and consideration of ‘not for resuscitation’ orders.
Elise Button
Elise Button is an experienced haematology and bone marrow transplant nurse who specialises in the area of palliative and supportive care. She has recently completed a Masters of Advanced Practice with Honours at Griffith University and is now undertaking a Doctor of Philosophy at the Queensland University of Technology. Her passion is providing holistic care for patients living with haematological malignancies and their families. Elise’s research interests focus on ways to improve palliative care provision for haematology patients. Full results from her recent studies are planned for publication in an upcoming edition of Oncology Nursing Forum. The goal of her doctorate study is early identification of haematology patients with palliative care needs.

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“Haematology nurses perceive ongoing blood product support and rapid deterioration of patients as significant barriers in providing palliative and end-of-life care to relapsed transplant patients”
ELISE BUTTON

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Nurses
Nursing is based on a holistic and family centered model of care. Nurses currently play a crucial role in providing holistic and palliative care for transplant patients ⁹. The literature highlights the value of the nurse-patient-family relationship¹⁰.
Nurses face significant emotional burden caring for dying patients in the stem cell transplant setting, as they are long-term patients with whom they have formed close relationship. It is nursing staff who will be with the patient and family around the clock providing care and support. As the scope of nursing practice is redefined to meet the needs of patients in increasingly complex health care systems, nurses will become increasingly relied upon. An example of nurses meeting the needs of palliative transplant patients is demonstrated by Cooke, Gemmill & Grant who presented a paper on a nurse led palliative education intervention following relapse, with positive results ¹¹. Internationally nurse practitioners have been established in the stem cell transplant setting to provide holistic health care throughout the patient journey ¹². Their role in the provision of palliative care has not yet been fully utilized or explored in the Australian health care setting.
Haematology nurses perceive ongoing blood product support and rapid deterioration of patients as significant barriers in providing palliative and end-of-life care to relapsed transplant patients ¹³. Ongoing frequent transfusions prevent patients from going home and often delay transfer from hospitals to palliative care units. While blood product transfusions are usually considered active treatment by palliative care services, haematology patients often require transfusions until close to death for symptom management. Haematology nurses and medical staff cite lack of knowledge from specialist palliative care services as an obstacle to early referrals and sharing care ¹⁴.
Research I recently conducted in conjunction with Griffith University Health Institute, has shed light on this topic further. A survey gathering insights from senior nurses at leading stem cell transplant facilities in Australia and New Zealand confirmed many of the themes found in the literature. These themes included nursing support for earlier integration of palliative care, and challenges faced sharing care with specialist palliative care services. This research also indicated that nurses felt they have a crucial role to play in improving palliative care provision for these patients. The full results of this study are planned for publication in an upcoming edition of Oncology Nursing Forum.
Conclusion
Despite improvements and advances made in the field of stem cell transplantation, many patients will die from their disease. Barriers exist in providing palliative and end-of-life care to patients who relapse following an allogeneic stem cell transplantation. This is an exciting time when nurses, now more than ever, have a key role to play in providing holistic care for haematology patients and improving palliative and end of life care for relapsed transplant patients.
References

1. Foundation, L. (2014). “Blood Cancers.” Retrieved 12 April 2014, 2014, from http://www.leukaemia.org.au/blood-cancers.


2. Wingard J. Bone marrow to blood stem cells, past, present, future. In: Ezzone SS-P, K, editor. Blood & marrow stem cell transplantation: Principles, practice & nursing insights. 3rd Edition ed. Massacheusetts: Jones & Bartlett Publishers; 2007. p. 1-18.


3. Barrett, J., & Battiwalla, M. (2010). Relapse after allogeneic stem cell transplantation. Expert Review of Hematology, 3 (4), 429-51.


4. CIBMTR. (2011). Current uses and outcomes of hematopoietic stem cell transplantation 2011: Summary slides worldwide. Milwaukee: Centre for International Blood & Marrow Transplantation.


5. World Health Organization. (2012). WHO definition of palliative care. Retrieved 28-June, 2012 from World Health Organization: http://www.who.int/cancer/palliative/definition/en/


6. Temel, J., Greer, J., Muzikansky, A., Gallagher, E., Admane, S., Jackson, V., et al. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363, 733-742.


7. Temel, J., Jackson, V., Billings, A., Dahlin, C., Block, S., Buss, M., et al. (2007). Phase II study: Integrated palliative care in newly diagnosed advanced non-small-cell cancer patients. Journal of Clinical Oncology, 25 (17), 2377-2382.


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11. Cook, L., Gemmill, R., & Grant, M. (2011). Creating palliative education sessions for hematopoietic stem cell transplantation recipients at relapse. Clinical Journal of Oncolgoy Nursing, 15 (4), 411-417.


12. Knopf, K. (2011). Core competencies for bone marrow transplant nurse practitioners. Clinical Journal of Oncology Nursing , 15 (1), 102-105.


13. McGrath, P., & Holewa, H. (2007). Special considerations for haematology patients in relation to end-of-life care: Australian findings. European Journal of Cancer Care, 16, 164-171.


14. Auret KB, C; Joske, D. Australasian hematologist referral patterns to palliative care: Lack of consensus on when & why. INternal Medicine Journal. 2003;33:566-71.