Tan Sheng Lian - Role of Nursing in HSCT and Palliative Intervention in Adult HSCT Patients
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Tan Sheng Lian - Role of Nursing in HSCT and Palliative Intervention in Adult HSCT Patients
- 1. Tan Sheng Lian Senior Staff Nurse, Haematology, Singapore General Hospital 28 Oct 2016 Role of Nursing in HSCT and Palliative intervention in adult HSCT patients
- 2. 2 • Ward routine • Environment • Protective isolation and infection control practices Orientate • Transplant protocol and process • Potential side effects and complications • Importance of adherence to medications Educate • Holistic care (physiological, psychological, social) • In collaboration with other healthcare professionals Care Provision 2 Nursing in HSCT
- 3. 3 • Emotional • Coping strategies • Self care Support • Assess patient’s self care ability and care needs Assessment and Discharge Planning 3 Nursing in HSCT
- 5. 5 Why Palliative in HSCT? 5
- 6. 6 Why Palliative in HSCT? • Symptoms during and post transplant – mucositis, nausea, pain, fatigue • Complications • Potential to deteriorate rapidly- sepsis, hemorrhage, organ failure 6
- 7. 7 Why Palliative in HSCT? • Psychosocial effects from transplant • Make meaning of illness 7
- 8. 8 Why Palliative in HSCT? • Caregiver burden 8
- 9. 9 Why Palliative in HSCT? • Secondary malignancy 9
- 10. 10 Why Palliative in HSCT? • Better quality of death - prevent inappropriate place of death, reduce non-beneficial intensive care 10
- 11. 11 When to refer Palliative? 11
- 12. 12 12 Barriers to Palliative referral Palliative Care
- 13. 13 • Want active treatment and to fight all the way • Younger and healthier patients may not have considered mortality or EOL care preferences • Ignorance is bliss as a form of coping mechanism • Overly optimistic or only chooses to listen to the positive outcomes • Not emotionally ready to discuss palliative care or acknowledge that they are deteriorating or dying Patient and family factors 13 Barriers to Palliative referral
- 14. 14 • Difficulty in prognostication and predicting survival • Limited experience with palliative care • Lack of standardized referral criteria • Symptom distress may be underappreciated • Psychosocial support may be provided by social workers • Discussing mortality or EOL preferences in advance of clinical decline may reduce patient and family hope/ create concerns that they will not do everything possible to cure the patient • Shortage of trained palliative care providers Physician factors 14 Barriers to Palliative referral
- 15. 15 • Not familiar with palliative care • Little influence over timing of palliative care referrals • End of life discussions are dependent on the physicians Nursing factors 15 Barriers to Palliative referral
- 16. 16 • Ms A. • 33yo, married, son 18mths old • Peripheral T cell Lymphoma • Allogeneic MUD HSCT Jul 2016 • Complicated by fungal infection (trichosporon asahii), AKI, DAH, Grade 1 GVHD Gut • 4 ICU admissions • 21st Oct • Unmet wishes 16 Personal experience
- 17. 17 Can’t forget her looks… her empty staring eyes.. When she asked me “why am I still alive”. It keeps playing through my mind She passed on in a place she hated most: ICU. Where is the palliative care in this? Her suffering has ended. But she had some unfulfilled wishes. For her somehow her wishes were all neglected to a certain extent. The fact that her QOL and her final wishes were not properly addressed is sad and depressing to see. Everyone dies eventually and everyone deserves to have the right to how they want their death to be. She wanted a good shower, a good spread of food Actually for transplant, it is very difficult to draw a line between active and palliative. It is our duty to update patient and family to fully understand the whole situation and allow the possibilities of not making it to be known to them 17 Nurses’ voices
- 18. 18 • Early palliative involvement especially after first ICU admission • Symptom control, psychosocial and spiritual support • Discussing goals of care and wishes More quality time spent with family • Better psychosocial support for patient and family 18 How can we improve Ms. A’s care?
- 19. 19 • Nurses can play a key role in improving care and advocating for palliative care integration • Specialist palliative care APN within hematology setting • Develop routine referral criteria • Physicians should routinely ask open ended questions about concerns eg. What are your top concerns right now? • Interventions to support family and caregiver – therapeutic relationships, support group, bereavement support 19 Where to go from here?
- 21. 21 Button, E.B., Gavin, N.C., & Keogh, S.J. (2014). Exploring palliative care provision for recipients of allogeneic hematopoietic stem cell transplantation who relapsed. Oncology Nursing Forum, 41(4), 370-381. Chow, K., & Coyle, N. (2011). Providing palliative care to family caregivers throughout the bone marrow tranplantation trajectory. Journal of Hospice and Palliative Nursing, 13(1), 7-13. Epstein, A.S., Goldberg, G.R., & Meier, D.E. (2012). Palliative care and hematologic oncology: The promise of collaboration. Blood Reviews, 26, 233-239. doi: 10.1016/j.blre.2012.07.001 Harden, K.L. (2016). Early intervention with transplantation recipients to improve access to and knowledge of palliative care. Clinical Journal of Oncology Nursing, 20(4), E88-E92. Manitta, V.J., Philip, J.A.M., & Cole-Sinclair, M.F. (2010). Pallative care and the hemato-oncological patient: can we live together? A review of the literature. Journal of Palliative Medicine, 13(8), 1021-1025. DOI: 10.1089/jpm.2009.0267 Loggers, E.T., Lee, S., Chilson, K., Back, A.L., Block, S., & Loberiza Jr, F.R. (2014). Advance care planning among hematopoietic cell transplant patients and bereaved caregivers. Bone Marrow Transplant, 49(10), 1317-1322. doi: 10.1038/bmt.2014.152 Reksua, V.M., & Paganini, M.C. (2015). Palliative care guidelines for patients undergoing hematopoietic stem cell transplantation. Cogitare Enferm, 20(3), 525-530. Tierney, D.K., Passaglia, J., & Jenkins, P. (2014). Palliative care of hematopoietic cell transplant recipients and families. Seminars in Oncology Nursing, 30(4), 253-261. References 21
Editor's Notes
- Ward routine Environment- layout of room, positive pressure room and velocontrol door Isolation- not to leave room except for procedures, wear mask when leaving room, no plants or flowers in the room, no raw fruits to be kept in room, visitor policy (no young children or sick visitors, or visitors who received live vaccination in past 6 weeks) Transplant process- type of conditioning, side effects specific to conditioning, side effects of chemotherapy, risk of bleeding and infection, stem cell infusion procedure and possible reactions, medications (prophylactic and immunosuppressants) Care- physiological (nutrition, personal and oral hygiene, ensure symptoms are well controlled), psychological and social (provide encouragement and a listening ear)
- Coping with isolation, anxiety and stress (music, watching TV, meditation, distraction, coloring) Self-care- symptoms to watch out for and report, caring for the CVC, encourage independence in performing ADLs Discharge planning- living arrangements, home modifications, anyone to cook and perform household chores at home
- A growing body of literature reported that palliative care is poorly understood and integrated in the HSCT setting. So a common question that surfaces is, transplant is an treatment that is provided mostly with the aim of cure, so why do we need palliative on board? Most of us may still have a stigma towards palliative care, thinking that it is only required nearing the end-of-life. However, the scope of palliative care extends beyond that, it includes symptom control, psychosocial and spiritual support with the goal of improving QOL of patients with a serious or life-threatening illness, such as cancer or leukemia.
- Figure 1 shows some of the consequences of high-dose conditioning regimens and SCT that the patient may experience in the first 100 days and beyond.
- Timely collaboration with palliative would help haematology physicians in managing the physical symptoms and complications during and post transplant, thus improving QOL. Early referral to palliative care and discussions on goals of care can allow patients to make informed decisions and the healthcare team to provide care consistent with patient’s goals and values especially if the patient becomes gravely ill and lose decision making capacity (Tierney et al., 2014).
- Besides the physical effects, HSCT commonly causes significant emotional, existential and practical stress for patients as well. In the transplant setting, psychosocial stressors include the profound life change imposed by the treatment (especially the physically isolating and time-consuming aspect), adverse effects of treatment, worry about treatment success, infertility, financial consequences of the treatment and difficulty understanding and processing information from healthcare providers. Even following a successful transplant, these psychosocial impact can last for years (Epstein et al., 2012). Timely and open communication regarding prognosis allows patients to have a better understanding of their life expectancy, share their thoughts, develop new hope and make meaning of their illness.
- Other than the patients, families and caregivers can also suffer from psychosocial stress. Throughout HSCT, the patient relies heavily on their family and caregivers and may be discharged home while still requiring a significant amount of physical and psychological care (Chow & Coyle, 2011). It was reported that partners of patients who underwent HSCT have significantly more fatigue and cognitive dysfunction as, more depressive symptoms and also sleep as well as sexual problems, leading to poor relationship satisfaction and spiritual well-being (Epstein et al., 2012).
- Secondary malignancy- Even if the leukemia is so called cured by the transplant, patients can also suffer from secondary malignancy years down the road from the effects of chemotherapy and total body irradiation. This can be traumatizing for the patients and affect how they make meaning of the illness and their coping. Relapse- remains the most common cause of treatment failure and death post alloHSCT. Post-relapse treatment is complicated by patient’s decreased ability to withstand additional cytotoxic or immune therapy because of previous damage from chemotherapy, complications or GVHD. Only a small minority of patients are able to progress to another alloHSCT. A study (Button et al., 2014) reported that pain and other symptoms were not well controlled in terminal phase of recipients of alloHSCT who relapsed. This led to high levels of distress.
- In the Asian culture, patients usually prefer to die at home. However, if care preferences are not explored early, usually doctors will go all out to resuscitate the patient. Once patients are transferred to the ICU, care is directed by multiple medical teams, including the ICU team, specialty consultants, and the HCT team. Family members are often stressed, sleep deprived, confused and faced with conflicting information and recommendations and at the same time have to struggle to make decisions regarding the patient’s care (Tierney et al., 2014). Therefore, early palliative care and ACP can help prevent inappropriate place of death and provide the patient better quality of death.
- WHO recommends palliative referral at any time in the disease trajectory if a patient with life-limiting illness or his/her SO have needs that are not being met. Ideally, palliative care is implemented at diagnosis and is provided in conjunction with curative efforts. Early in the disease trajectory, if the patient and family does not have problems coping, palliative need not be the main focus of care. Over time, if physical symptoms are not well-controlled, if post-transplant complications become life-threatening, or for patients who relapsed and a second transplantation is not a viable option of care, palliative care measures can be actively implemented.
- Some of the patients may want active treatment and to fight all the way due to personal reasons. They may be the breadwinner of the house, or have young children and spouse which they need to take care of.
- Research has revealed that the longer a doctor’s relationship with a patient, the less accurate he or she is in predicting survival, resulting in overoptimism (Manitta et al., 2010). Therefore, the patient’s primary physician may be reluctant in referring the patient to palliative. Symptom distress may be underappreciated during transplant or considered more acceptable to physicians due to the dire nature of the illness. A cross sectional survey among transplant physicians showed that majority of them perceived that patients would be willing to accept a poor quality of life in return for a chance of cure (Epstein et al., 2012).
- Nurses’ continual presence in the clinical setting and significant amounts of time spent with patients and families can help them in identifying patients’ needs and concerns. Therefore, Nurses are in the position to advocate for patients by helping them understand their condition and make the best decision regarding their care. We can also highlight patient’s concerns to the medical team so that early palliative referral or ACP can be done. Referral criteria can be established, eg. Multiple complications that may require ICU admission, high distress score, or social circumstances. The physician should be aware that for patients deteriorating or nearing their end of life, their priorities may be different from those assumed by medical staff.
- A RCT presented at the 2016 ASCO meeting showed that patients with hematologic malignancies admitted for autologous/allogeneic HSCT who received inpatient palliative care interventions had improved QOL, decreased depression, anxiety and symptom burden. Cure and palliation can go hand in hand and palliative care can be offered without conflicting treatment goals. Exposing patient to palliative services empowers them with an option of an alternative to treatment (Epstein, 2012).