Copyright © eContent Management Pty Ltd. Contemporary Nurse (2014) 46(2): 251–253.
Home is where I want to die: Kelly’s journey Ludmilla Sneesby Calvary Mater Newcastle Department of Palliative Care, Hunter Region Mail Centre, Newcastle, NSW, Australia
Abstract: The definition of a ‘good death’ is centred on being peaceful, dignified and pain free. The preferred place of death has also been highlighted as an important concept in defining a good death (Cox, Almack, Pollack, & Seymour, 2011). Seventy percent of Australians express the desire to spend their last days at home. In reality only 16% of people die at home (Preferred Place of Death, 2008). With 10% of Australians dying in residential aged care facilities and approximately 20% in hospices, the rest die in hospitals (Parish et al., 2006). Family support and the family’s care giving ability play a major role in determining whether a person is able to die at home. Other factors include the availability of medical and nursing care. This story has been written with the consent of Kelly’s husband. All efforts have been made to maintain privacy and confidentiality: Pseudonyms have been used.
Keywords: palliative care, dying, place of death
‘I want to go home’: Kelly’s story elly’s story illustrates how the impossible was made possible. Kelly was only 32 years old and gravely ill. She was extremely frail and required extensive nursing and medical care. It took meticulous discharge planning by the team in the Oncology ward followed by the assistance and support of the palliative care outreach team in the community to grant Kelly her final wish. The community outreach service is based in an urban region of Australia connected to a large tertiary hospital and provides a 24-hour nursing service and medical staff on call. Together with the determination and devotion of her family Kelly was able to die at home.
K
The journey home ‘I want to go home, please help me go home’ she whispered, her electric blue eyes pleading. Her tiny frail body dwarfed by hospital white sheets. Her pretty face was hidden by tubes pumping oxygen into her failing lungs. A naso-gastric tube was protruding from her nose, constantly emptying her stomach, as more tubes in her arms provided fluids. ‘I want to die at home’ she said. Soft fine wisps of blonde hair tried desperately to escape from her shiny scalp. Kelly was diagnosed with ovarian cancer in October 2011 after presenting to her local doctor with a history of constipation, abdominal mass and anorexia. She then endured weeks of
aggressive chemotherapy and radiotherapy but the future looked promising. Kelly believed she had beaten the cancer. In January 2012, Kelly married the love of her life. She had known John for 12 years, had been engaged for 6 years, and they had travelled the world together. They both managed to scrape up enough money for a deposit on a house and were planning a family. In May 2012, Kelly experienced episodes of constipation associated with abdominal cramps and nausea. Her cancer had returned with a vengeance. Computerised tomography (CT) showed a peritoneal recurrence with multiple soft tissue modules. Scans revealed multiple metastases throughout the abdomen, pelvis and the right lobe of Kelly’s liver. More cycles of chemotherapy. A Central Venous Access Device (CVAD) was inserted to enable venous access. The effects of the treatment on her fertility were discussed with Kelly and John. Her hospital room became her prison. Never ending tests, scans, surgery and a colostomy. A pleural effusion developed in her right lung, 1.5 L of fluid was removed from her lung; she struggled to breathe. Treatment had caused aches, pains and numbness in her fingers as well as gastric reflux. Tumour markers increased and she was not responding to treatment. More bad news, life is a nightmare interrupted by bouts of vomiting and dry retching. She could not eat and needed more tubes to keep her alive. An
Volume 46, Issue 2, February 2014
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abdominal paracentesis was performed and 6 L of fluid was drained from her abdomen. The medications dulled the pain but she was never free of pain. ‘I want to go home, look out on my garden, play my music and be with John and my dog Honey’. ‘I want to be free of these tubes that chain me to this bed’. Kelly was desperately ill, close to death. John and her parents wanted her home, wanted to make her last wish come true. We had to work quickly. It was a team effort. The occupational therapists organised equipment: A hospital bed and an oxygen concentrator. Suction apparatus for naso-gastric suctioning could not be sourced. John, her husband found one on EBay, but we knew time was not on our side. John and the family were willing to provide manual suctioning half hourly, to keep her stomach decompressed, if necessary. They were shown how to do this. The family were given a crash course on nursing. Lessons were given on repositioning using slide sheets, bathing, oral hygiene and pressure care. Kelly was unable to tolerate anything orally including medications. Artificial hydration via CVAD was probably contributing to her symptom s of nausea, vomiting and abdominal pain. The fluids were gradually weaned and at this time she was only receiving 30 ml/hour. A sub- cutaneous (sc) infusion was commenced using a NIKI pump delivering morphine for pain relief, ranitidine to reduce the volume of gastric secretions and levomepromazine (trade name is Nozinan) (use trade and generic names please) which is an antiemetic (Therapeutic Guidelines Palliative Care, 2010). A dedicated sc line for the weaning doses of Dexamethasone was inserted. Break through pain relief was to be given sc. The family were taught how to administer the injections. This became the responsibility of John and Kelly’s father. After discussions with the family, her mother admitted being fearful of administering the ‘last dose’. Instructions on how to administer sub-lingual clonazepam drops were given should Kelly become agitated or restless. Her mother felt comfortable in administering the drops. 252
CN
Volume 46, Issue 2, February 2014
The day before discharge was planned, Kelly’s condition deteriorated. She had a bad night, haunted by her fears and pain. That morning she was barely responsive, she had required a number of breakthrough medications for pain. Her breathing was laboured, death seemed inevitable. John was tired and weary. Home seemed so far away. Somehow Kelly rallied; determined and brave. ‘I’m going home’ she said. She was very drowsy but still able to have coherent conversations. John was well aware of how critically ill Kelly was. He would travel with her in the ambulance, if she should die in transit he would be with her. The day arrived that Kelly was going home. She had always been resistive to having a urinary catheter as it was another invasive tube. But that morning she consented to having one as she decided it was easier for her family to care for her with a catheter in place. She was catheterised just before the ambulance arrived. The pharmacist arrived with a myriad of medications for the sc infusion and breakthrough medications that may be needed if pain or other symptoms such as nausea should occur. Instructions were repeated and explanations for the use of the medications. A ‘flowchart’ for medication use was given to the family. There were many tears shed by the doctors and nurses for this brave young women who had fought gallantly for her life. She was inspirational as she faced death. She said good bye, hugged and thanked the nurses who had cared for her. The family were apprehensive. The Palliative Care outreach nurse visited that afternoon to support the family and to ensure that all was in place to facilitate a good death for Kelly. The team were to visit twice daily and it was emphasised that the family could contact the team at any time. The following day, Kelly was still conscious but started to develop terminal secretions and had required a number of breakthrough medications for pain. Morphine was increased and Glycopyrrolate (trade name Rubinul) was added
© eContent Management Pty Ltd
Home is where I want to die: Kelly’s journey to the subcutaneous infusion (Glycopyrrolate is an anticholinergic used to reduce oral-pharyngeal secretions). Drainage from her stomach via nasogastric tube was diminishing as her fluid intake was decreasing; therefore, the need for manual aspirations also decreased. It was reported that Kelly was being cared for beautifully. She was enjoying the massages, her family, and the ambience of her home. The Palliative care nurse gently discussed with her family what to expect and what to do when Kelly died. Subsequent visits by the Palliative care nurses reported that Kelly was comfortable and very settled. Her family, although very sad were grateful for having this time with Kelly. Kelly died peacefully, spending the last 48 hours of her life at home surrounded by her family and her dog Honey keeping watch over
CN
her. Her room looked out on her garden; the golden wattles were out in bloom. References Cox, K. M., Almack, K., Pollack, K., & Seymour, J. (2011). Is it recorded in the notes? Documentation of end-of-life care and preferred place to die discussions in the final weeks of life. BMC Palliative Care, 10(19), 10–18. doi:10.1186/1472-684X-10-18 Palliative Expert Group. (2010). Therapeutic guidelines palliative care (Version 3). Melbourne, VIC: Therapeutic Guidelines Limited. Parish, K., Glaetzer, D., Grbich, C., Hammond, L., Hegarty, M., & McHugh, A. (2006). Dying for attention: Palliative care in the acute care setting. Australian Journal of Advanced Nursing, 24(2), 21–25. Preferred Place of Death. (2008). Retrieved from http://www. caresearch.com.au/caresearch/tabid/407/Default.aspx Received 04 September 2012
Accepted 04 June 2013
N o w Ava i l a b l e Culture, Death and Dying with Dignity A special issue of Health Sociology Review – Volume 21 Issue 4 – ISBN 978-1-921729-86-7 – December 2012 Guest Editors: Glennys Howarth (School of Social Science and Social Work, University of Plymouth, UK), Ruth McManus (School of Social and Political Sciences, University of Canterbury, Christchurch, New Zealand), Sheila Harper (University of Sydney) and Cyril Schafer (University of Otago) Editorial: Culture, death and dying with dignity – Ruth McManus Bringing our dying home: How caring for someone at end of life builds social capital and develops compassionate communities – Debbie Horsfall, Kerrie Noonan and Rosemary Leonard Kurunpa: Keeping spirit on country – Nerelle Constance Poroch Emotions and the research interview: What hospice workers can teach us – Cindy L Cain ‘You can name her’: Ritualised grieving by an Australian woman for her stillborn twin – John P Rosenberg
Death and grief on-line: Virtual memorialization and changing concepts of childhood death and parental bereavement on the Internet – Lisa M Mitchell, Peter H Stephenson, Susan Cadell and Mary Ellen Macdonald Tragic heroes, moral guides and activists: Representations of maternal grief, child death and tragedy in Australian newspapers – Roslyn Weaver and Debra Jackson Death, working-class culture and social distinction – Steve Conway
http://hsr.e-contentmanagement.com/archives/vol/21/issue/4/marketing/
Death, Dying and Loss in the 21st Century A special issue of Health Sociology Review – Volume 16 Issue 5 – 96 pages – ISBN 978-0-9757422-9-7 – December 2007 Editor: Allan Kellehear (Centre for Death and Society, Department of Social and Policy Sciences, University of Bath, UK) Editorial – Allan Kellehear The mismanagement of dying – Beverley McNamara and Lorna Rosenwax Death and the body beautiful: Aesthetics and embodiment in press portrayals of requested death in Australia on the edge of the 21st century – Fran McInerney Avoiding death: The ultimate challenge in the provision of contemporary healthcare? – Kay Price and Julianne Cheek Practical bereavement – Philip Bachelor Death and mourning in technologically mediated culture – Margaret Gibson
Whatever happened to social class?: An examination of the neglect of working class cultures in the sociology of death – Glennys Howarth Closing in on death?: Reflections on research and researchers in the field of death and dying – Jenny Hockey Book reviews Talking with angel about illness, death and survival – Evelyn Elsaesser-Valarino – Reviewed by Dorothy H Broom Bodies at Risk: an Ethnography of Heart Disease – Elizabeth E Wheatley – Reviewed by Jeanne Daly Xenotransplantation: Law and Ethics – Craig Fry – Reviewed by Laura Williamson and Sheila McLean
http://hsr.e-contentmanagement.com/archives/vol/16/issue/5/marketing/ www.e-contentmanagement.com
© eContent Management Pty Ltd
Volume 46, Issue 2, February 2014
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253
Copyright of Contemporary Nurse: A Journal for the Australian Nursing Profession is the property of eContent Management Pty. Ltd. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Home is where I want to die: Kelly’s journey Ludmilla Sneesby Calvary Mater Newcastle Department of Palliative Care, Hunter Region Mail Centre, Newcastle, NSW, Australia
Abstract: The definition of a ‘good death’ is centred on being peaceful, dignified and pain free. The preferred place of death has also been highlighted as an important concept in defining a good death (Cox, Almack, Pollack, & Seymour, 2011). Seventy percent of Australians express the desire to spend their last days at home. In reality only 16% of people die at home (Preferred Place of Death, 2008). With 10% of Australians dying in residential aged care facilities and approximately 20% in hospices, the rest die in hospitals (Parish et al., 2006). Family support and the family’s care giving ability play a major role in determining whether a person is able to die at home. Other factors include the availability of medical and nursing care. This story has been written with the consent of Kelly’s husband. All efforts have been made to maintain privacy and confidentiality: Pseudonyms have been used.
Keywords: palliative care, dying, place of death
‘I want to go home’: Kelly’s story elly’s story illustrates how the impossible was made possible. Kelly was only 32 years old and gravely ill. She was extremely frail and required extensive nursing and medical care. It took meticulous discharge planning by the team in the Oncology ward followed by the assistance and support of the palliative care outreach team in the community to grant Kelly her final wish. The community outreach service is based in an urban region of Australia connected to a large tertiary hospital and provides a 24-hour nursing service and medical staff on call. Together with the determination and devotion of her family Kelly was able to die at home.
K
The journey home ‘I want to go home, please help me go home’ she whispered, her electric blue eyes pleading. Her tiny frail body dwarfed by hospital white sheets. Her pretty face was hidden by tubes pumping oxygen into her failing lungs. A naso-gastric tube was protruding from her nose, constantly emptying her stomach, as more tubes in her arms provided fluids. ‘I want to die at home’ she said. Soft fine wisps of blonde hair tried desperately to escape from her shiny scalp. Kelly was diagnosed with ovarian cancer in October 2011 after presenting to her local doctor with a history of constipation, abdominal mass and anorexia. She then endured weeks of
aggressive chemotherapy and radiotherapy but the future looked promising. Kelly believed she had beaten the cancer. In January 2012, Kelly married the love of her life. She had known John for 12 years, had been engaged for 6 years, and they had travelled the world together. They both managed to scrape up enough money for a deposit on a house and were planning a family. In May 2012, Kelly experienced episodes of constipation associated with abdominal cramps and nausea. Her cancer had returned with a vengeance. Computerised tomography (CT) showed a peritoneal recurrence with multiple soft tissue modules. Scans revealed multiple metastases throughout the abdomen, pelvis and the right lobe of Kelly’s liver. More cycles of chemotherapy. A Central Venous Access Device (CVAD) was inserted to enable venous access. The effects of the treatment on her fertility were discussed with Kelly and John. Her hospital room became her prison. Never ending tests, scans, surgery and a colostomy. A pleural effusion developed in her right lung, 1.5 L of fluid was removed from her lung; she struggled to breathe. Treatment had caused aches, pains and numbness in her fingers as well as gastric reflux. Tumour markers increased and she was not responding to treatment. More bad news, life is a nightmare interrupted by bouts of vomiting and dry retching. She could not eat and needed more tubes to keep her alive. An
Volume 46, Issue 2, February 2014
CN
251
CN
Ludmilla Sneesby
abdominal paracentesis was performed and 6 L of fluid was drained from her abdomen. The medications dulled the pain but she was never free of pain. ‘I want to go home, look out on my garden, play my music and be with John and my dog Honey’. ‘I want to be free of these tubes that chain me to this bed’. Kelly was desperately ill, close to death. John and her parents wanted her home, wanted to make her last wish come true. We had to work quickly. It was a team effort. The occupational therapists organised equipment: A hospital bed and an oxygen concentrator. Suction apparatus for naso-gastric suctioning could not be sourced. John, her husband found one on EBay, but we knew time was not on our side. John and the family were willing to provide manual suctioning half hourly, to keep her stomach decompressed, if necessary. They were shown how to do this. The family were given a crash course on nursing. Lessons were given on repositioning using slide sheets, bathing, oral hygiene and pressure care. Kelly was unable to tolerate anything orally including medications. Artificial hydration via CVAD was probably contributing to her symptom s of nausea, vomiting and abdominal pain. The fluids were gradually weaned and at this time she was only receiving 30 ml/hour. A sub- cutaneous (sc) infusion was commenced using a NIKI pump delivering morphine for pain relief, ranitidine to reduce the volume of gastric secretions and levomepromazine (trade name is Nozinan) (use trade and generic names please) which is an antiemetic (Therapeutic Guidelines Palliative Care, 2010). A dedicated sc line for the weaning doses of Dexamethasone was inserted. Break through pain relief was to be given sc. The family were taught how to administer the injections. This became the responsibility of John and Kelly’s father. After discussions with the family, her mother admitted being fearful of administering the ‘last dose’. Instructions on how to administer sub-lingual clonazepam drops were given should Kelly become agitated or restless. Her mother felt comfortable in administering the drops. 252
CN
Volume 46, Issue 2, February 2014
The day before discharge was planned, Kelly’s condition deteriorated. She had a bad night, haunted by her fears and pain. That morning she was barely responsive, she had required a number of breakthrough medications for pain. Her breathing was laboured, death seemed inevitable. John was tired and weary. Home seemed so far away. Somehow Kelly rallied; determined and brave. ‘I’m going home’ she said. She was very drowsy but still able to have coherent conversations. John was well aware of how critically ill Kelly was. He would travel with her in the ambulance, if she should die in transit he would be with her. The day arrived that Kelly was going home. She had always been resistive to having a urinary catheter as it was another invasive tube. But that morning she consented to having one as she decided it was easier for her family to care for her with a catheter in place. She was catheterised just before the ambulance arrived. The pharmacist arrived with a myriad of medications for the sc infusion and breakthrough medications that may be needed if pain or other symptoms such as nausea should occur. Instructions were repeated and explanations for the use of the medications. A ‘flowchart’ for medication use was given to the family. There were many tears shed by the doctors and nurses for this brave young women who had fought gallantly for her life. She was inspirational as she faced death. She said good bye, hugged and thanked the nurses who had cared for her. The family were apprehensive. The Palliative Care outreach nurse visited that afternoon to support the family and to ensure that all was in place to facilitate a good death for Kelly. The team were to visit twice daily and it was emphasised that the family could contact the team at any time. The following day, Kelly was still conscious but started to develop terminal secretions and had required a number of breakthrough medications for pain. Morphine was increased and Glycopyrrolate (trade name Rubinul) was added
© eContent Management Pty Ltd
Home is where I want to die: Kelly’s journey to the subcutaneous infusion (Glycopyrrolate is an anticholinergic used to reduce oral-pharyngeal secretions). Drainage from her stomach via nasogastric tube was diminishing as her fluid intake was decreasing; therefore, the need for manual aspirations also decreased. It was reported that Kelly was being cared for beautifully. She was enjoying the massages, her family, and the ambience of her home. The Palliative care nurse gently discussed with her family what to expect and what to do when Kelly died. Subsequent visits by the Palliative care nurses reported that Kelly was comfortable and very settled. Her family, although very sad were grateful for having this time with Kelly. Kelly died peacefully, spending the last 48 hours of her life at home surrounded by her family and her dog Honey keeping watch over
CN
her. Her room looked out on her garden; the golden wattles were out in bloom. References Cox, K. M., Almack, K., Pollack, K., & Seymour, J. (2011). Is it recorded in the notes? Documentation of end-of-life care and preferred place to die discussions in the final weeks of life. BMC Palliative Care, 10(19), 10–18. doi:10.1186/1472-684X-10-18 Palliative Expert Group. (2010). Therapeutic guidelines palliative care (Version 3). Melbourne, VIC: Therapeutic Guidelines Limited. Parish, K., Glaetzer, D., Grbich, C., Hammond, L., Hegarty, M., & McHugh, A. (2006). Dying for attention: Palliative care in the acute care setting. Australian Journal of Advanced Nursing, 24(2), 21–25. Preferred Place of Death. (2008). Retrieved from http://www. caresearch.com.au/caresearch/tabid/407/Default.aspx Received 04 September 2012
Accepted 04 June 2013
N o w Ava i l a b l e Culture, Death and Dying with Dignity A special issue of Health Sociology Review – Volume 21 Issue 4 – ISBN 978-1-921729-86-7 – December 2012 Guest Editors: Glennys Howarth (School of Social Science and Social Work, University of Plymouth, UK), Ruth McManus (School of Social and Political Sciences, University of Canterbury, Christchurch, New Zealand), Sheila Harper (University of Sydney) and Cyril Schafer (University of Otago) Editorial: Culture, death and dying with dignity – Ruth McManus Bringing our dying home: How caring for someone at end of life builds social capital and develops compassionate communities – Debbie Horsfall, Kerrie Noonan and Rosemary Leonard Kurunpa: Keeping spirit on country – Nerelle Constance Poroch Emotions and the research interview: What hospice workers can teach us – Cindy L Cain ‘You can name her’: Ritualised grieving by an Australian woman for her stillborn twin – John P Rosenberg
Death and grief on-line: Virtual memorialization and changing concepts of childhood death and parental bereavement on the Internet – Lisa M Mitchell, Peter H Stephenson, Susan Cadell and Mary Ellen Macdonald Tragic heroes, moral guides and activists: Representations of maternal grief, child death and tragedy in Australian newspapers – Roslyn Weaver and Debra Jackson Death, working-class culture and social distinction – Steve Conway
http://hsr.e-contentmanagement.com/archives/vol/21/issue/4/marketing/
Death, Dying and Loss in the 21st Century A special issue of Health Sociology Review – Volume 16 Issue 5 – 96 pages – ISBN 978-0-9757422-9-7 – December 2007 Editor: Allan Kellehear (Centre for Death and Society, Department of Social and Policy Sciences, University of Bath, UK) Editorial – Allan Kellehear The mismanagement of dying – Beverley McNamara and Lorna Rosenwax Death and the body beautiful: Aesthetics and embodiment in press portrayals of requested death in Australia on the edge of the 21st century – Fran McInerney Avoiding death: The ultimate challenge in the provision of contemporary healthcare? – Kay Price and Julianne Cheek Practical bereavement – Philip Bachelor Death and mourning in technologically mediated culture – Margaret Gibson
Whatever happened to social class?: An examination of the neglect of working class cultures in the sociology of death – Glennys Howarth Closing in on death?: Reflections on research and researchers in the field of death and dying – Jenny Hockey Book reviews Talking with angel about illness, death and survival – Evelyn Elsaesser-Valarino – Reviewed by Dorothy H Broom Bodies at Risk: an Ethnography of Heart Disease – Elizabeth E Wheatley – Reviewed by Jeanne Daly Xenotransplantation: Law and Ethics – Craig Fry – Reviewed by Laura Williamson and Sheila McLean
http://hsr.e-contentmanagement.com/archives/vol/16/issue/5/marketing/ www.e-contentmanagement.com
© eContent Management Pty Ltd
Volume 46, Issue 2, February 2014
CN
253
Copyright of Contemporary Nurse: A Journal for the Australian Nursing Profession is the property of eContent Management Pty. Ltd. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
