Compassionate, person-centred, dignified care: the art of nursing at the end of life
Following on from our case study on Palliative Care in Israel last week, and in advance of Older People’s Day on 1 October, we present a story from Hong Kong about nurses helping the elderly to a more peaceful end of life.
The life expectancy of people in Hong Kong is amongst the highest globally, with nearly two thirds of all deaths attributed to people aged 65 years or above. However, according to a report on the Quality of Death Index (Lien Foundation 2015), the development of end-of-life care in the region is unsatisfactory. Death and dying issues remain a cultural taboo and so it is difficult to ascertain patients’ end-of-life care preferences. Repeated hospital admissions are common in the last phase of life due to inadequate community palliative care services. The majority of deaths due to end-stage diseases occur in acute hospitals due to operational and legal barriers. The focus of care is predominantly curative-oriented unless family consensus can be reached. Since many bereaved family are unprepared for the patient’s death, they often remained unsatisfied with the care and are filled with guilt or anger. Healthcare providers also express frustration about the quality of end-of-life care. All these issues called for an urgent need to develop a culturally congruent care delivery model to optimise the end-of-life care in the local community.
Since 2016, the Hong Kong Association of Gerontology has pioneered a project called “Palliative and End of Life Care in Residential Care Homes for the Elderly in Hong Kong”, with funding from The Hong Kong Jockey Club Charities Trust. The project, under the supervision of Dr Edward Man-fuk Leung and a multidisciplinary steering committee, is mainly led by a group of experienced and passionate nurses in geriatric care, palliative care and nursing management, including Cecilia Nim-chi Chan, a former General Manager (Nursing) who oversaw the nursing management of a hospital, Faith Chun-fong Liu, a nurse consultant in palliative care, and Man Chui-wah, a former Department Operations Manager who supervised all Medical and Geriatric wards in a hospital. The project comprises capacity building, environmental restructuring, protocol development and public education. The Association has played a pivotal role in negotiating with community geriatric outreach healthcare teams, hospital departments, ambulance services and funeral services to facilitate the implementation of this novel care model. To date, almost 50 care homes have participated in the project.
To illustrate the effectiveness of the project, we bring you the story of Ms L, an 86-year-old lady, living with congestive heart failure, dementia and severe chronic obstructive pulmonary disease who was referred to the project due to her unstable health. Ms L moved to the care home since she was highly dependent, but her daughter continued to visit daily. In August 2020, she was sent to hospital because her oxygen level had dropped, and she had a poor appetite over the past few days. Intravenous antibiotics were given, and the medical team considered nasogastric tube feeding. Due to infection control measures, her family members were not allowed to visit her in the hospital and were very anxious about her condition. With the support of the project, her son and daughter were able to discuss the end-of-life care for their mother. After deliberation, they considered comfort care would be in her best interest. The project nurse communicated their care decision with the medical team in the hospital.
Ms L was discharged back to her care home and tube feeding was withheld. She stayed in a single room specially designed for this project, so that her family can accompany her. Having a single is a privilege in Hong Kong since shared bedrooms for two to six residents are commonly designed in these facilities. Her children and the staff noted that Ms L was able to respond to them by nodding and smiling. The nurses and care workers continued to provide personal care to maintain hygiene and promote comfort, and the visiting doctor of the project and the hospital outreach team came regularly to monitor her condition over two weeks. She died peacefully in the company of her family members in the care home.
Ms L’s situation enables us to appreciate the art of nursing at the end of life, enabling continuity of care. The nurses assessed the care needs of Ms L and her family members in a timely manner; empowered them to voice their concerns and care wishes; served as a communication bridge among family members, different care sectors and healthcare teams; and provided compassionate, person-centred, dignified care in the final days of life.
The project has cultivated a culture for improving end-of-life care and facilitating the implementation of dying in place in the community. But there is still much room for improvement.
During COVID-19, policies of visiting restrictions in care homes and hospitals caused difficulties with personal contact with clients. The nurses found it more challenging to provide timely care and support. However, telecommunications were used to connect with clients and other healthcare providers to maintain close communication.
To view a video on this project, please click here.
Lien Foundation (2015). The 2015 Quality of Death Index: Ranking palliative care across thew world. A report by the Economist Intelligence Unit. Available at: http://www.lienfoundation.org/sites/default/files/2015%20Quality%20of%20Death%20Report.pdf