Art & science end of life care
Enabling ICU patients to die at home Battle E et al (2014) Enabling ICU patients to die at home. Nursing Standard. 29, 5, 46-49. Date of submission: February 24 2014; date of acceptance: July 21 2014.
Abstract There is often an overlap between intensive care medicine and palliative medicine. When all curative treatment options have been explored, keeping the patient comfortable and free from pain is the main concern for healthcare practitioners. Patient autonomy in end of life decisions has not been encouraged in the intensive care unit (ICU), until now, because of its specialised and technical nature. Staff at the Royal Bolton Hospital have broken down the barriers to enabling ICU patients to die in their own homes, and have developed a system of collaborative working that can help to fulfil a patient’s final wish to go home. This article describes how ICU staff developed a process that enabled two ventilated patients to be transferred home for end of life care.
Authors Emma Battle Ward manager Lucy Bates Consultant anaesthetist Emma Liderth, Samantha Jones, Sheryl Sheen, Andrew Ginty, Melanie Northmore Nurses All based in the intensive care unit, Bolton Hospital NHS Foundation Trust, Bolton, Lancashire Correspondence to: [email protected]
Keywords Death, end of life care, intensive care, nursing, palliative care
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: rcnpublishing.com/r/author-guidelines
THE ROYAL BOLTON HOSPITAL intensive care unit (ICU) has successfully discharged two patients home for end of life care. This challenged the existing paradigm of intensive care, but by overcoming preconceptions and organisational barriers to discharge home, we helped patients to achieve a better death, as perceived by their loved ones. This article discusses how we acted on the wishes of two patients in the last few days of their lives to overcome the barriers to care at home and provide quality end of life care for patients and their relatives. The two case studies (Box 1 and Box 2) presented in this article describe the processes involved, lessons learned and recommendations for future practice. Names have been changed throughout the article to protect confidentiality.
Background The mortality rate for patients admitted to ICUs in the UK is around 24% (Intensive Care National Audit and Research Centre (ICNARC) 2013). A deliberate decision to withdraw or limit care is made in a large proportion of these deaths, based on medical condition and response to treatment (Wunsch et al 2005). This means that death is often an anticipated and managed event within the ICU. Most ICU patients who die are already unconscious because of a combination of severe illness and sedative drugs. They can also require mechanical ventilation to maintain life, which presents a major technological and organisational barrier to being considered for discharge home at the end of life – so much so that going home to die is not usually considered. Some patients will be awake, however, and able to participate in their treatment choices. Insertion of a tracheostomy tube is a relatively common procedure for ICU patients (National Confidential Enquiry into Patient Outcome and Death 2014). One desirable effect of this is to allow mechanical ventilatory support to continue with reduced need for sedative drugs. Reduced sedation increases the likelihood of patients regaining mental capacity and being able to participate in decisions regarding their care, including end of life choices. Although exactly what constitutes ‘a good death’ varies between individuals, dying in the
46 october 1 :: vol no 5 :: 2014 NURSING STANDARD / RCN Downloaded from29 RCNi.com by ${individualUser.displayName} on Dec 02, 2015.©For personal use only. No other usesPUBLISHING without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
familiar surroundings of their own home is highly valued by many patients (Sanjo et al 2007). Recommendations to support this change in practice include the Department of Health’s (2008) End of Life Care Strategy: Promoting High Quality Care for Adults at the End of Their Life – which states that patients should be able to choose where to spend their final days wherever possible – and
the National Institute for Health and Care Excellence’s (2011) Quality Standard for End of Life Care for Adults. ‘Advance care planning’ is seldom appropriate in the ICU setting. However, for a small group of people who are aware of their diagnosis and have the capacity to make informed choices, it may be a useful process to enable the patient, in consultation
BOX 1 Case study: ‘Mary’ Mary was a 68-year-old retired barrister who had had multiple previous inpatient episodes and had been an inpatient on a medical ward for 82 days during this admission, before being admitted to the intensive care unit (ICU). She had experienced respiratory failure as a result of an exacerbation of chronic obstructive pulmonary disease, which led to her needing respiratory support from a ventilator. She had a tracheostomy tube in place to enable ongoing ventilatory support. On day 19 following her admission to the ICU, a discussion took place involving Mary and the ICU doctors and nurses about her long-term prognosis. Despite her lack of progress, Mary was initially adamant that she wanted to continue with full care. However, a week later the question was revisited and Mary acknowledged that her ventilatory support was static – she had been unable to make progress on the breathing machine and was not going to recover – and she spontaneously said: ‘This is no life!’. She then expressed a wish to be able to go home to die. Although this was a unique request in our unit’s experience, we agreed to explore the idea. Our local bereavement team suggested contacting the district nurse liaison team, who initially were confused about being contacted by ICU staff, but immediately attended. Mary was deemed to have full mental capacity to make such a decision; she accepted that she was close to death and that she would rather be in her own home with her cat. She knew that her time at home would be short, perhaps only hours. The basic requirements for the discharge, such as providing a hospital bed and oxygen, were arranged for the following day. The district nurses agreed to visit Mary in the community to provide support, although they could not offer continuous care. The local hospice also provided some input. It was arranged that a doctor and nurse from the ICU would transfer Mary home, make her comfortable and then leave, with prior agreement that Mary might not have professional care for periods of time. We anticipated and discussed the vital role of family and friends in making the discharge work well. Although Mary had family, she was not particularly close to them and did not want them involved. She did have a very close friend who agreed to help. Having cared for his father at home before death, this friend was prepared for what was likely to happen. The matter of certification following death also had to be resolved. In more routine circumstances when a patient is discharged home for end of life care, a statement of intent is written by the hospital. When a patient dies at home, a death certificate can be issued by the GP as long as he or she has seen the patient in the community. Although the ICU consultant could write the statement of intent, the GP would have to visit Mary before her death. If not, then the death would be treated as ‘unexpected’, police involvement would be required and Mary’s body might have to be returned to the hospital. Mary’s GP was supportive of the plan and agreed to see her on discharge. As a surgical procedure had recently been performed, we also needed to discuss the plan with the coroner; no objections were raised. On the morning of discharge, the ICU nursing staff gave Mary a bed bath and washed her hair. All intravascular lines were removed and a ‘butterfly’ cannula was inserted. A syringe driver with medication for symptom control was set up. Mary was established on a portable ventilator suitable for transferring ICU patients. When it was confirmed that the bed and oxygen had arrived at her home, an ambulance was called. Both the ICU nurse and the ICU consultant accompanied Mary home in the ambulance. The ICU ward manager also drove directly to Mary’s house to provide extra support. The district nurses and GP were telephoned to inform them of the estimated arrival time. The journey took 15 minutes and, as the ambulance arrived, we told Mary that she was home. She smiled and winked and then was settled comfortably into her bed. A handover of care was made to the GP and the district nurses. The ventilator was disconnected and nasal oxygen given. Although Mary died very soon afterwards, it was as she had requested: in her own home with her beloved cat. The GP certified her death and the transfer team left about 30 minutes later, leaving Mary’s friend to contact the undertaker. On returning to the hospital, the ICU staff involved undertook an informal debriefing session. It was felt that the discharge had gone well and had been worthwhile because Mary’s wishes had been respected. One point of reflection was that mechanical ventilation could possibly have been continued a little longer at home, as her death occurred within only a few minutes. It was also agreed that a ‘standard of work’ should be formulated to support similar discharges in future.
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Art & science end of life care with their family and ICU staff, to make decisions about their future care.
Royal Bolton Hospital ICU The Royal Bolton Hospital, a district general hospital in the north west of England, has 628 beds and serves a population of 263,000. Our critical care facility consists of an eight-bed ICU and a ten-bed high-dependency unit. We admit approximately 430 patients to the ICU per year. These are a mix of general medical and surgical patients, but almost all are admitted as emergencies. In common with similar units in the UK (ICNARC 2013), our ‘in-unit’ mortality rate is around 25% and most of these deaths are anticipated. A patient on a general ward who was deemed to be at the end of life would normally be offered the opportunity to go home to be cared for by their family or to go to the local hospice. Until recently this option was not thought to be possible for patients in ICU because of the technical and staffing requirements of providing high-level critical care. However, the direct patient request discussed in Box 1 prompted us to research this possibility. An informal literature search confirmed that, although this was a new concept in the UK, other ICUs around the world had successfully achieved this aim on behalf of their patients. Mann et al (2004), in New Zealand, discharged 17 ICU patients home to die over six years and concluded that end of life care at home could be a practical and positive option. This was supported in a literature review by Kompanje (2009). Their findings were
limited to conscious patients, and concluded that it may not be in the best interests of the unconscious or sedated patient to be transferred home. Huang et al (2009) conducted a retrospective observational study over five years and found that many of the 346 transfers home for end of life care in Taiwan were made to comply with cultural tradition. Dying at home is a valued norm for some cultures (Coolen 2012). Lusardi et al (2011) describe an initiative developed by staff in an ICU in the United States to transfer patients home for end of life care. They transferred seven patients over a two-year period and reported that their experience, although limited, was ‘overwhelmingly positive’.
Developing future practice Following Jane’s discharge home (Box 2), we knew that this process could be valuable for other patients in similar circumstances. We formed an ‘end of life at home’ group, including the ward manager, ICU consultant, four staff nurses and a healthcare assistant, each having been involved in the two initial discharges. This group has devised a ‘standard of work’ to outline the important stages of discharging a patient home for end of life care. It has also collaborated with the district nurses, end of life care programme manager, bereavement team and hospice staff to share ideas. The need for social care input has been considered. The patients transferred home so far have not survived long enough for this to be required; it remains a consideration for future discharges, however.
BOX 2 Case study: ‘Jane’ Another patient expressed the wish to die at home several weeks later. Jane, a 71-year-old housewife, had been admitted to the intensive care unit post-operatively with sepsis, acute kidney injury and respiratory failure. Before admission she had a colonic stent inserted to manage extrinsic bowel compression by metastases from an ovarian adenocarcinoma. After 18 days of intensive care, there was no progress. The oncology team had decided that chemotherapy was no longer an option and stated that her prognosis was poor. After this news was communicated and accepted, Jane said that she wanted to go home to die. Jane lived with her husband and two adult sons, who all agreed with her wishes. Lessons learned from the first transfer made the second discharge easier and, after involving the district nurse liaison team, Jane’s discharge home was planned for the following day. On the morning of discharge and with all personal care attended to, Jane was dressed in her own nightclothes. All intravascular lines were removed and a syringe driver and suitable transfer ventilator set up. We were now confident that this could be a safe nurse-led process. Two nurses accompanied Jane in the ambulance, along with a junior doctor who simply wanted to learn from the experience. The unit manager went to Jane’s home and met briefly with her family to confirm the expected events. On arrival, Jane was transferred into bed and made comfortable. The GP and the district nurses arrived and care was handed over. The district nurse knew Jane and her family and gave them the contact numbers for the district nurses and the GP. In the light of our experience with Mary’s discharge, the ventilator remained connected to allow Jane’s family time to be with her. After about an hour and a half, Jane became less responsive. The ventilator was then disconnected and the transfer team and the district nurses left. We rang her family two hours later to learn that Jane had died peacefully. Her GP was on the way to certify the death and the family were contacting the undertaker. They were very appreciative of what had been achieved and thanked staff for their efforts.
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A number of ICU nurses have now undertaken ‘verification of death’ training so that they can complete this in the patient’s home if necessary. The ‘end of life at home’ group has performed training for other ICU staff to share their knowledge and experiences. An information leaflet has been produced for relatives and carers, based on family feedback and staff consultation. Our experience has also been presented at an academic meeting for ICUs in the region.
Conclusion The ICU team believes that end of life care at home is an option that can be considered for a small but significant proportion of patients who would otherwise die in the ICU.
Patients who retain mental capacity must be involved in decisions about their future care, but usually they can choose only from options offered by the treating team. Thinking more widely about what is the right thing to do for patients we cannot cure, and then overcoming the barriers to achieving those aims one by one, gives us potentially better options for patients to consider. Reviewing the available literature suggests that end of life care at home for ICU patients is a relatively innovative concept in the UK. But a multidisciplinary approach, good organisation and communication between primary and secondary care that enables an ICU patient to die at home can result in a very important difference to patients’ experiences near to death NS
References Coolen PR (2012) Cultural Relevance in End-of-Life Care. http://tinyurl. com/k8ktz38 (Last accessed: September 18 2014.)
Intensive Care National Audit and Research Centre (2013) Case Mix Programme Version 3.0 Electronic Data Analysis Report. Document available from author on request.
Mann S, Galler D, Williams P, Frost P (2004) Caring for patients and families at the end of life: withdrawal of intensive care in the patient’s home. New Zealand Medical Journal. 117, 1196, 935.
Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for Adults at the End of Their Life. http://tinyurl. com/o38nlej (Last accessed: September 18 2014.)
Kompanje EJO (2009) Should we discharge comatose patients from intensive care to die in their own bed at home after withdrawal of mechanical ventilation? Intensive Care Medicine. 35, 5, 773–774.
National Confidential Enquiry into Patient Outcome and Death (2014) On the Right Trach? A Review of the Care Received by Patients Who Underwent a Tracheostomy. http:// tinyurl.com/lmjtflj (Last accessed: September 18 2014.)
Huang YC, Huang SJ, Ko WJ (2009) Going home to die from surgical intensive care units. Intensive Care Medicine. 35, 5, 810–815.
Lusardi P, Jodka P, Stambovsky M et al (2011) The going home initiative: getting critical care patients home with hospice. Critical Care Nurse. 31, 5, 46–57.
National Institute for Health and Care Excellence (2011) Quality Standard for End of Life Care for Adults. Quality standard No. 13.
http://www.nice.org.uk/guidance/QS13 (Last accessed: September 18 2014.) Sanjo M, Miyashita M, Morita T et al (2007) Preferences regarding end-of-life cancer care and associations with good-death concepts: a population-based survey in Japan. Annals of Oncology. 18, 9, 1539–1547. Wunsch H, Harrison DA, Harvey S, Rowan K (2005) End-of-life decisions: a cohort study of the withdrawal of all active treatment in intensive care units in the United Kingdom. Intensive Care Medicine. 31, 6, 823–831.
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Enabling ICU patients to die at home Battle E et al (2014) Enabling ICU patients to die at home. Nursing Standard. 29, 5, 46-49. Date of submission: February 24 2014; date of acceptance: July 21 2014.
Abstract There is often an overlap between intensive care medicine and palliative medicine. When all curative treatment options have been explored, keeping the patient comfortable and free from pain is the main concern for healthcare practitioners. Patient autonomy in end of life decisions has not been encouraged in the intensive care unit (ICU), until now, because of its specialised and technical nature. Staff at the Royal Bolton Hospital have broken down the barriers to enabling ICU patients to die in their own homes, and have developed a system of collaborative working that can help to fulfil a patient’s final wish to go home. This article describes how ICU staff developed a process that enabled two ventilated patients to be transferred home for end of life care.
Authors Emma Battle Ward manager Lucy Bates Consultant anaesthetist Emma Liderth, Samantha Jones, Sheryl Sheen, Andrew Ginty, Melanie Northmore Nurses All based in the intensive care unit, Bolton Hospital NHS Foundation Trust, Bolton, Lancashire Correspondence to: [email protected]
Keywords Death, end of life care, intensive care, nursing, palliative care
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at: rcnpublishing.com/r/author-guidelines
THE ROYAL BOLTON HOSPITAL intensive care unit (ICU) has successfully discharged two patients home for end of life care. This challenged the existing paradigm of intensive care, but by overcoming preconceptions and organisational barriers to discharge home, we helped patients to achieve a better death, as perceived by their loved ones. This article discusses how we acted on the wishes of two patients in the last few days of their lives to overcome the barriers to care at home and provide quality end of life care for patients and their relatives. The two case studies (Box 1 and Box 2) presented in this article describe the processes involved, lessons learned and recommendations for future practice. Names have been changed throughout the article to protect confidentiality.
Background The mortality rate for patients admitted to ICUs in the UK is around 24% (Intensive Care National Audit and Research Centre (ICNARC) 2013). A deliberate decision to withdraw or limit care is made in a large proportion of these deaths, based on medical condition and response to treatment (Wunsch et al 2005). This means that death is often an anticipated and managed event within the ICU. Most ICU patients who die are already unconscious because of a combination of severe illness and sedative drugs. They can also require mechanical ventilation to maintain life, which presents a major technological and organisational barrier to being considered for discharge home at the end of life – so much so that going home to die is not usually considered. Some patients will be awake, however, and able to participate in their treatment choices. Insertion of a tracheostomy tube is a relatively common procedure for ICU patients (National Confidential Enquiry into Patient Outcome and Death 2014). One desirable effect of this is to allow mechanical ventilatory support to continue with reduced need for sedative drugs. Reduced sedation increases the likelihood of patients regaining mental capacity and being able to participate in decisions regarding their care, including end of life choices. Although exactly what constitutes ‘a good death’ varies between individuals, dying in the
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familiar surroundings of their own home is highly valued by many patients (Sanjo et al 2007). Recommendations to support this change in practice include the Department of Health’s (2008) End of Life Care Strategy: Promoting High Quality Care for Adults at the End of Their Life – which states that patients should be able to choose where to spend their final days wherever possible – and
the National Institute for Health and Care Excellence’s (2011) Quality Standard for End of Life Care for Adults. ‘Advance care planning’ is seldom appropriate in the ICU setting. However, for a small group of people who are aware of their diagnosis and have the capacity to make informed choices, it may be a useful process to enable the patient, in consultation
BOX 1 Case study: ‘Mary’ Mary was a 68-year-old retired barrister who had had multiple previous inpatient episodes and had been an inpatient on a medical ward for 82 days during this admission, before being admitted to the intensive care unit (ICU). She had experienced respiratory failure as a result of an exacerbation of chronic obstructive pulmonary disease, which led to her needing respiratory support from a ventilator. She had a tracheostomy tube in place to enable ongoing ventilatory support. On day 19 following her admission to the ICU, a discussion took place involving Mary and the ICU doctors and nurses about her long-term prognosis. Despite her lack of progress, Mary was initially adamant that she wanted to continue with full care. However, a week later the question was revisited and Mary acknowledged that her ventilatory support was static – she had been unable to make progress on the breathing machine and was not going to recover – and she spontaneously said: ‘This is no life!’. She then expressed a wish to be able to go home to die. Although this was a unique request in our unit’s experience, we agreed to explore the idea. Our local bereavement team suggested contacting the district nurse liaison team, who initially were confused about being contacted by ICU staff, but immediately attended. Mary was deemed to have full mental capacity to make such a decision; she accepted that she was close to death and that she would rather be in her own home with her cat. She knew that her time at home would be short, perhaps only hours. The basic requirements for the discharge, such as providing a hospital bed and oxygen, were arranged for the following day. The district nurses agreed to visit Mary in the community to provide support, although they could not offer continuous care. The local hospice also provided some input. It was arranged that a doctor and nurse from the ICU would transfer Mary home, make her comfortable and then leave, with prior agreement that Mary might not have professional care for periods of time. We anticipated and discussed the vital role of family and friends in making the discharge work well. Although Mary had family, she was not particularly close to them and did not want them involved. She did have a very close friend who agreed to help. Having cared for his father at home before death, this friend was prepared for what was likely to happen. The matter of certification following death also had to be resolved. In more routine circumstances when a patient is discharged home for end of life care, a statement of intent is written by the hospital. When a patient dies at home, a death certificate can be issued by the GP as long as he or she has seen the patient in the community. Although the ICU consultant could write the statement of intent, the GP would have to visit Mary before her death. If not, then the death would be treated as ‘unexpected’, police involvement would be required and Mary’s body might have to be returned to the hospital. Mary’s GP was supportive of the plan and agreed to see her on discharge. As a surgical procedure had recently been performed, we also needed to discuss the plan with the coroner; no objections were raised. On the morning of discharge, the ICU nursing staff gave Mary a bed bath and washed her hair. All intravascular lines were removed and a ‘butterfly’ cannula was inserted. A syringe driver with medication for symptom control was set up. Mary was established on a portable ventilator suitable for transferring ICU patients. When it was confirmed that the bed and oxygen had arrived at her home, an ambulance was called. Both the ICU nurse and the ICU consultant accompanied Mary home in the ambulance. The ICU ward manager also drove directly to Mary’s house to provide extra support. The district nurses and GP were telephoned to inform them of the estimated arrival time. The journey took 15 minutes and, as the ambulance arrived, we told Mary that she was home. She smiled and winked and then was settled comfortably into her bed. A handover of care was made to the GP and the district nurses. The ventilator was disconnected and nasal oxygen given. Although Mary died very soon afterwards, it was as she had requested: in her own home with her beloved cat. The GP certified her death and the transfer team left about 30 minutes later, leaving Mary’s friend to contact the undertaker. On returning to the hospital, the ICU staff involved undertook an informal debriefing session. It was felt that the discharge had gone well and had been worthwhile because Mary’s wishes had been respected. One point of reflection was that mechanical ventilation could possibly have been continued a little longer at home, as her death occurred within only a few minutes. It was also agreed that a ‘standard of work’ should be formulated to support similar discharges in future.
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Art & science end of life care with their family and ICU staff, to make decisions about their future care.
Royal Bolton Hospital ICU The Royal Bolton Hospital, a district general hospital in the north west of England, has 628 beds and serves a population of 263,000. Our critical care facility consists of an eight-bed ICU and a ten-bed high-dependency unit. We admit approximately 430 patients to the ICU per year. These are a mix of general medical and surgical patients, but almost all are admitted as emergencies. In common with similar units in the UK (ICNARC 2013), our ‘in-unit’ mortality rate is around 25% and most of these deaths are anticipated. A patient on a general ward who was deemed to be at the end of life would normally be offered the opportunity to go home to be cared for by their family or to go to the local hospice. Until recently this option was not thought to be possible for patients in ICU because of the technical and staffing requirements of providing high-level critical care. However, the direct patient request discussed in Box 1 prompted us to research this possibility. An informal literature search confirmed that, although this was a new concept in the UK, other ICUs around the world had successfully achieved this aim on behalf of their patients. Mann et al (2004), in New Zealand, discharged 17 ICU patients home to die over six years and concluded that end of life care at home could be a practical and positive option. This was supported in a literature review by Kompanje (2009). Their findings were
limited to conscious patients, and concluded that it may not be in the best interests of the unconscious or sedated patient to be transferred home. Huang et al (2009) conducted a retrospective observational study over five years and found that many of the 346 transfers home for end of life care in Taiwan were made to comply with cultural tradition. Dying at home is a valued norm for some cultures (Coolen 2012). Lusardi et al (2011) describe an initiative developed by staff in an ICU in the United States to transfer patients home for end of life care. They transferred seven patients over a two-year period and reported that their experience, although limited, was ‘overwhelmingly positive’.
Developing future practice Following Jane’s discharge home (Box 2), we knew that this process could be valuable for other patients in similar circumstances. We formed an ‘end of life at home’ group, including the ward manager, ICU consultant, four staff nurses and a healthcare assistant, each having been involved in the two initial discharges. This group has devised a ‘standard of work’ to outline the important stages of discharging a patient home for end of life care. It has also collaborated with the district nurses, end of life care programme manager, bereavement team and hospice staff to share ideas. The need for social care input has been considered. The patients transferred home so far have not survived long enough for this to be required; it remains a consideration for future discharges, however.
BOX 2 Case study: ‘Jane’ Another patient expressed the wish to die at home several weeks later. Jane, a 71-year-old housewife, had been admitted to the intensive care unit post-operatively with sepsis, acute kidney injury and respiratory failure. Before admission she had a colonic stent inserted to manage extrinsic bowel compression by metastases from an ovarian adenocarcinoma. After 18 days of intensive care, there was no progress. The oncology team had decided that chemotherapy was no longer an option and stated that her prognosis was poor. After this news was communicated and accepted, Jane said that she wanted to go home to die. Jane lived with her husband and two adult sons, who all agreed with her wishes. Lessons learned from the first transfer made the second discharge easier and, after involving the district nurse liaison team, Jane’s discharge home was planned for the following day. On the morning of discharge and with all personal care attended to, Jane was dressed in her own nightclothes. All intravascular lines were removed and a syringe driver and suitable transfer ventilator set up. We were now confident that this could be a safe nurse-led process. Two nurses accompanied Jane in the ambulance, along with a junior doctor who simply wanted to learn from the experience. The unit manager went to Jane’s home and met briefly with her family to confirm the expected events. On arrival, Jane was transferred into bed and made comfortable. The GP and the district nurses arrived and care was handed over. The district nurse knew Jane and her family and gave them the contact numbers for the district nurses and the GP. In the light of our experience with Mary’s discharge, the ventilator remained connected to allow Jane’s family time to be with her. After about an hour and a half, Jane became less responsive. The ventilator was then disconnected and the transfer team and the district nurses left. We rang her family two hours later to learn that Jane had died peacefully. Her GP was on the way to certify the death and the family were contacting the undertaker. They were very appreciative of what had been achieved and thanked staff for their efforts.
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A number of ICU nurses have now undertaken ‘verification of death’ training so that they can complete this in the patient’s home if necessary. The ‘end of life at home’ group has performed training for other ICU staff to share their knowledge and experiences. An information leaflet has been produced for relatives and carers, based on family feedback and staff consultation. Our experience has also been presented at an academic meeting for ICUs in the region.
Conclusion The ICU team believes that end of life care at home is an option that can be considered for a small but significant proportion of patients who would otherwise die in the ICU.
Patients who retain mental capacity must be involved in decisions about their future care, but usually they can choose only from options offered by the treating team. Thinking more widely about what is the right thing to do for patients we cannot cure, and then overcoming the barriers to achieving those aims one by one, gives us potentially better options for patients to consider. Reviewing the available literature suggests that end of life care at home for ICU patients is a relatively innovative concept in the UK. But a multidisciplinary approach, good organisation and communication between primary and secondary care that enables an ICU patient to die at home can result in a very important difference to patients’ experiences near to death NS
References Coolen PR (2012) Cultural Relevance in End-of-Life Care. http://tinyurl. com/k8ktz38 (Last accessed: September 18 2014.)
Intensive Care National Audit and Research Centre (2013) Case Mix Programme Version 3.0 Electronic Data Analysis Report. Document available from author on request.
Mann S, Galler D, Williams P, Frost P (2004) Caring for patients and families at the end of life: withdrawal of intensive care in the patient’s home. New Zealand Medical Journal. 117, 1196, 935.
Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for Adults at the End of Their Life. http://tinyurl. com/o38nlej (Last accessed: September 18 2014.)
Kompanje EJO (2009) Should we discharge comatose patients from intensive care to die in their own bed at home after withdrawal of mechanical ventilation? Intensive Care Medicine. 35, 5, 773–774.
National Confidential Enquiry into Patient Outcome and Death (2014) On the Right Trach? A Review of the Care Received by Patients Who Underwent a Tracheostomy. http:// tinyurl.com/lmjtflj (Last accessed: September 18 2014.)
Huang YC, Huang SJ, Ko WJ (2009) Going home to die from surgical intensive care units. Intensive Care Medicine. 35, 5, 810–815.
Lusardi P, Jodka P, Stambovsky M et al (2011) The going home initiative: getting critical care patients home with hospice. Critical Care Nurse. 31, 5, 46–57.
National Institute for Health and Care Excellence (2011) Quality Standard for End of Life Care for Adults. Quality standard No. 13.
http://www.nice.org.uk/guidance/QS13 (Last accessed: September 18 2014.) Sanjo M, Miyashita M, Morita T et al (2007) Preferences regarding end-of-life cancer care and associations with good-death concepts: a population-based survey in Japan. Annals of Oncology. 18, 9, 1539–1547. Wunsch H, Harrison DA, Harvey S, Rowan K (2005) End-of-life decisions: a cohort study of the withdrawal of all active treatment in intensive care units in the United Kingdom. Intensive Care Medicine. 31, 6, 823–831.
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![[Reflections on the right to die at home].](/assets/img/hold.png)
