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OPINION PIECE: Honouring the wishes of a dying patient: From intensive care to home with palliative care LYNETTE CAMPBELL Department of Palliative Care, Calvary Mater Newcastle, Waratah, NSW, Australia

Abstract: Due to the severity of illness, death is not uncommon in intensive care units (ICU). Unfortunately, a major percentage of deaths in ICU are patients diagnosed with a terminal disease. Initiating discussions on the transition from curative care to palliative care can be stressful for doctors, patients and families. The challenge for doctors, is to maintain open communication and shared-decision making with patients and family members at this very sensitive time. This can be challenging due to the culture of ICU which focuses on saving lives rather than palliation. Facilitating discussions for terminally ill patients in ICU may enhance their end-of-life care and assist patients to die in an environment of their choice such as their home.

Keywords: palliative care, curative care, transitional care, communication, education

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ore than 50% of Australians will die in hospitals, despite the vast majority wanting to die at home (Peters & Sellick, 2006). Terminally ill patients who receive palliative care can expect effective symptom management, which greatly improves their quality of life. However, there are a large number of patients who die in acute care settings, such as ICU who do not receive appropriate palliative care (Peters & Sellick, 2006). Evidence suggests that as many as half the people admitted to an ICU at the end of their life would have chosen either to die at home, hospice or in a residential aged care facility (RACF) had they been given the choice (Olsen, 2012). The following case study highlights the importance of integrating palliative care into the care of all patients in our acute care areas who are at the end of life (EOL).

MR M’S JOURNEY Mr M (pseudonym) was a 64-year-old man who was admitted to an emergency department (ED) in a major regional city in NSW. He was noted to be generally unwell with fever and rigours. He was dehydrated and anorexic. Examination and investigations were unremarkable except for long standing dysuria. His provisional diagnosis and management was urosepsis complicated by hypertension, atrial fibrillation (AF) and acute renal failure (ARF). Mr M was treated with oxygen therapy, fluid resuscitation and intravenous (IV) antibiotics. Mr M was admitted to ICU

for ongoing management and investigations. Mr M’s medical history note included the fact that the previous year Mr M had been diagnosed with transitional cell carcinoma (TCC) of the bladder for which he received radiotherapy and chemotherapy with the aim of disease control rather than cure. Mr M had been married to his wife Mrs M (pseudonym) for over 20 years. They had no children but many relatives and friends. His wife stated that Mr M was well liked and respected in his community and was always ready to help others if needed. Mr M was a non-smoker/drinker and was independently mobile until 2 weeks prior to his admission to ED in July 2010. As part of Mr M’s investigation in ICU he underwent a transoesophageal echocardiogram (TOE) that indicated end-stage cardiac failure. The advice from the cardiologist was that Mr M was in poor health and suffering with multi-organ failure due to his rapid disease process and he was not suitable for curative treatment or surgical intervention. A discussion between the ICU medical team and Mr and Mrs M identified his present goals, medical needs and future symptom management requirements. Mr M identified that he was sad but at peace with his prognosis; however, his wish was not to die in hospital but in an environment that was familiar and safe to him, such as his home. It was at this stage that a referral was made to palliative care for ongoing management.

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THE TRANSITION FROM CURATIVE CARE TO PALLIATIVE CARE

Initiating discussions on the withdrawal of curative/ resuscitative treatment and the commencement of palliation can be emotive and distressing for patients, family members and doctors. However, if it is done well it can be a smooth transition for all involved (Thompson, McClement, & Daeninck, 2006). Permitting Mr M to focus on himself and not his illness at this difficult time allowed him to tell his story ‘Our stories define who we are… we continually author our own life stories as we reflect, interpret and re-interpret what happens in our lives… stories help us to make sense of the insensible’ (Kearsley, 2010, p. 3)… Mr M pleaded ‘I have to go home, I have to go home’. Earlier research studies on communication in palliative care exposed not only do doctors struggle with the discussions but also noted that the language they use can be ambiguous to patients. Using words such as progressing, negative and positive can have a different meaning when used in a medical terminology rather than in everyday speech that can lead to confusion (Fallowfield, Jenkins, & Beveridge, 2002). This is evident by the following example experienced by Mr M at a routine follow up visit with the urologist and recounted by Mrs M on the initial palliative care consult in ED. [The doctor informs Mr M that he has reviewed his recent tests today and there are signs that things are progressing] ‘So I think that you should not have any further chemotherapy.’ Mr M: ‘So what happens now?’ Doctor: ‘I just want you to come and see me if you develop problems with your urine output and I will treat that.’

Immediately after the interview Mr M is questioned by his wife and his understanding of the consult with the doctor is as follows; ‘Things are progressing well and I do not need any further treatment. I Just need to monitor my urination and if any problems the doctor will treat that.’ However difficult it is for doctors to communicate bad news, the patient needs honest and concise information about their disease prognosis, to obtain a clear understanding of the severity of the situation and to make important decisions regarding the rest of their lives (Lee, 2012).

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Unfortunately, there are many barriers for doctors in implementing the transition to palliative care; doctors may not feel confident or competent when discussing EOL care with patients and their family members and therefore, may avoid having difficult conversations regarding death and dying (Schofield, Carey, Love, Nehill, & Wein, 2006). Cultural, linguistic and religious issues may also impact discussions on EOL care (Schofield et al., 2006). When discussing the transition to palliative care doctors should have all the relevant information about the patient’s illness and prognosis. Studies indicate that it is optimal for doctors to ensure that discussions are undertaken in a private environment with adequate uninterrupted time that encourages family members to participate in the discussions. It is recommended that doctors ascertain the patient and family members understanding of the information given to them prior to ending the family meeting (Thompson et al., 2006). Physicians in ICU are expertly skilled in patient care, however, when the goal turns from curative care to EOL care they have little training in providing palliative care (Crighton, Coyne, Tate, Swigart, & Happ, 2008). Facilitating a smooth transition from curative care to palliative care can be assisted by doctors having a sound knowledge of EOL issues and the role of palliative care when dealing with patients with a life limiting disease (Fallowfield et al., 2002). It is paramount that doctors participate in ongoing education to maintain effective and compassionate communication skills that encourages shareddecision making between themselves, patient and family. Intensive care physicians need to encourage early palliative care involvement for patients receiving treatment for life limiting diseases to promote excellent symptom management and assist patients to live their life comfortably until their death. Research undertaken in oncology on the early introduction of palliative care after a patient’s diagnosis indicated that this can have a positive effect on their prognosis (Temel et al., 2010). The study incorporated 150 patients over a 12-week period. The patients were randomly chosen for either the group to receive early palliative care with integrated oncology treatment

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Honouring the wishes of a dying patient or the stand-alone oncology care. The study indicated that patients receiving early palliative care with standard oncology care had a longer life expectancy of up to 2 months while experiencing less aggressive EOL treatment. Overall, their patient’s quality of life and mood improved compared to those patients receiving stand-alone oncology treatment. For patients the transition from curative to a palliative paradigm can be a major disruption to their established health care regime and can instil feelings of uncertainty and fear in regards to their future health prospects. A sub-optimal transition from curative care to palliative care can leave patients with a feeling of abandonment (Temel et al., 2010). MR M’S JOURNEY CONTINUES A review by a clinical nurse consultant (CNC) from palliative care revealed that Mr M was pale, diaphoretic and in respiratory distress. Mr M was drowsy, but able to respond to questions appropriately. Again he expressed his wish to go home. Both Mr M and his wife were well aware of his poor prognosis and that no further curative treatment was available. It was at this stage that Mr and Mrs M decided in consultation with the clinicians, to seek discharge from hospital and further their care at home. It was a multidisciplinary team effort to arrange Mr M’s discharge from hospital. The physiotherapist and occupational therapist organised equipment such as a hospital bed and oxygen concentrator to be delivered to Mr M’s house the following day. A subcutaneous infusion pump (SCIP) containing morphine was commenced to manage Mr M’s dyspnoea (Palliative Expert Group, 2010). Mr M was discharged with the palliative care outreach (PCO) team managing his care on a daily basis at home. The following day Mr M’s condition was poor but stable, he was alert but lethargic. Mr M commented that he enjoyed sleeping in his own bed for that first night before the hospital bed arrived later that day. Over the next few days Mr M’s symptoms were well managed, however his condition rapidly deteriorated. On the morning of the 19/7/11, when PCO visited to reload Mr M’s SCIP he was unconscious, with no urine output. Mr M’s death was considered to be now imminent.

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CONCLUSION Mr M died peacefully that evening, in an environment of his choice surrounded by loved ones. Incorporating palliative care provided Mr M with excellent symptom management and signified that the transition from curative care to palliative care in ICU is attainable (Boyle, Miller, & ForbesThompson, 2005). Dying in ICU is not a pleasant experience, either for the patient or family members (Peters & Sellick, 2006). Evidence suggests that as many as half the people admitted to an ICU at the EOL would have preferred to die elsewhere, had they been given the choice (Fallowfield et al., 2002). Withdrawing futile treatment is a major decision between the patient, the family and doctor; therefore implementing open communication at this time is paramount. Communication allows the patient and family to speak openly and for the doctor to listen and answer questions honestly, which can increase a feeling of satisfaction for all involved (McDonagh et al., 2004). At this emotive time patients and family need for a sense of control and to be included in the decision making. This is particularly important as death draws closer (Clarke et al., 2003). In the future, doctors need to encourage open discussions about EOL care for patients with life-limiting illness to facilitate a death in an environment of their own choice such as home, as was the case with Mr M. ACKNOWLEDGEMENT Consent for this story was given by Mr M’s wife. REFERENCES Boyle, D. K., Miller, P. A., & Forbes-Thompson, S. A. (2005). Communication and end of life care in the intensive care unit. Critical Care Nursing, 28(4), 302–316. Clarke, E. B., Curtis, J. R., Luce, J. M., Levy, M., Danis, M., Nelson, J., & Solomon, M. Z. (2003). Quality indicators for end-of-life care in the intensive care unit. Critical Care Medicine, 31(9), 2255–2262. Crighton, M., Coyne, B., Tate, J., Swigart, V., & Happ, M. (2008). Transitioning to end-of-life care in the Intensive Care Unit. Cancer Nursing, 31(6), 478–484. Fallowfield, L. J., Jenkins, V. A., & Beveridge, H. A. (2002). Truth may hurt but deceit hurts more: Communication in palliative care. Palliative Medicine, 16, 297–303. Kearsley, J. H. (2010). Therapeutic use of self and the relief of suffering. Cancer Forum, 34(2), 71–74. Lee, S. (2012). Communication during transitions to palliative care. In M. O’Connor, S. Lee, & S. Aranda

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(Eds.), Palliative care in nursing (3rd ed., pp. 15–28). Melbourne, VIC: Ausmed Publications. McDonagh, J. R., Elliott, T. B., Engelberg, R. A., Treece, P. D., Shannon, S. E., Rubenfeld, G. D., Curtis, J. R. (2004). Family satisfaction with family conferences about end-of-life care in the intensive care unit: Increased proportion of family speech is associated with increased satisfaction. Critical Care Medicine, 32(7), 1484–1488. Olsen, L. (2012). Surveying new frontiers: Palliative care in the trauma ICU. Journal of Pain and Symptom Management, 43(2), 386. Palliative Expert Group. (2010). Therapeutic guidelines palliative care (3rd ed.). Melbourne, VIC: Therapeutic Guidelines. Peters, L., & Sellick, K. (2006). Quality of life of cancer patients receiving inpatient and home-based palliative care. Journal of Advanced Nursing, 53(5), 524–533.

Schofield, P., Carey, M., Love, A., Nehill, C., & Wein, S. (2006). Would you like to talk about your future treatment options? Discussing the transition from curative cancer treatment to palliative care. Palliative Medicine, 20, 397–406. Temel, J. S., Greer, J. A., Muzikansky, M. A., Gallagher, E. R., Admane, S., Jackson, V. A., … Lynch, T. J. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363(8), 733–742. Thompson, G. N., McClement, S. E., & Daeninck, P. J. (2006). ‘Changing lanes’: Facilitating the transition from curative to palliative care. Journal of Palliative Care, 22(2), 91–98. Received 03 October 2012

Accepted 09 May 2013

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Queering pornography through qualitative methods – Natalie Ingraham Schooling gender: Ethical dilemmas in employing critical youth studies – Sarah Prior Using mixed methods to analyse barriers to primary paediatric health access – Yvonne Parry and Eileen Willis Methodological challenges in studying urban Aboriginal homelessness – Wilfreda E Thurston, Nellie D Oelke and David Turner Challenges associated with qualitative interviewing for Indigenous research: Insights from experience – Pam McGrath, Nicole Rawson and Leonora Adidi Practice note: Using debriefing interviews to promote authenticity and transparency in mixed research – Kathleen M T Collins, Anthony J Onwuegbuzie, R Burke Johnson and Rebecca K Frels

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Opinion Piece: honouring the wishes of a dying patient: from intensive care to home with palliative care.

Due to the severity of illness, death is not uncommon in intensive care units (ICU). Unfortunately, a major percentage of deaths in ICU are patients d...
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