【November 2018】4- Care and Die in Place of Choice-Improving Palliative Care within Long-Term Care Facilities

Written by the HFT Secretariat (Based on the content of Prof. Chia-Chin Lin presentation in the 2018 International Conference on Palliative Care in Long-Term Care Settings - Integration of Palliative and Long-Term Care)

Professor Chia-Chin Lin is currently the Professor of Alice Ho Miu Ling Nethersole Charity Foundation in Nursing, and Head at HKU School of Nursing. Prior to joining HKU, Professor Lin served as Dean at the College of Nursing in Taipei Medical University between 2011 and 2017. She is a Fellow of the American Academy of Nursing; and received her Bachelor of Science in Nursing from Taipei Medical University, her Master of Science and Doctor of Philosophy from the University of Wisconsin-Madison School of Nursing and Educational Psychology. She has also obtained an EMBA from National Taiwan University.

Prof. Lin is originally from Taiwan and now serves in Hong Kong University, where she opens her speech by indicating how thrilled she is of Taiwan’s progressive palliative care. First she presents the global picture of how people die, then focuses on the current status of Taiwan, and finally, explains Hong Kong’s elderly situation compared to Taiwan’s.

She reports that the world population is aging rapidly with decreased birthrates, and this has changed the family structure drastically. For example, Taiwan’s life expectancy is now 79.8 years old, and the disability rate for people above 65 is 12.7-16.3%, which implies one in every six elderly is disabled and requires care. Additionally, the number of family members per Taiwanese household now is 2.77 persons; we can interpret from this number to be two adults and less than one child. Prof. Lin adds that it is foreseeable this will be the last generation to take care of its parents and the first generation to be abandoned by its children.

Choosing Where to Die

In an international study comparing the percentage of deaths occurring in hospitals and residential aged care settings in 45 populations around the world, whether people die in hospitals, LTC facilities, in their own homes, or elsewhere, varies across different cultures. However, when the results are restricted to people over 65, the number of people who die in hospitals grows significantly.

Dying at home is often viewed as the ideal scenario, but Prof. Lin said this might not be the case due to where the interviewees take place. That is, most participants choose their current locations as their preferred place to die, but as the question is asked closer to their death, the percentage of participants who choose to die in hospitals rise significantly. According to a study done by Eng-Kiong Yeoh

In Hong Kong, due to the government’s regulations on how it issues the death certificate, people often choose to die in hospitals and check-in 24 hours prior to avoid prolongation of body storage and official autopsy procedures.

For people to choose nursing homes, it is important to ensure nursing homes adequately provides for people’s needs. According to N. Greenwood’s research in 2017, dying elderlies in nursing homes often experience physical discomfort associated with the dying process, negative psychosocial experiences, unmet support with spiritual needs, inadequate care received and unsupportive physical environment.

Palliative Care Policies in the EU and the US

In the European Union, in order to integrate palliative care with long-term care facilities across Europe, a protocol of a cluster randomized controlled trial of the “PACE Steps to Success” is used. The goals are to evaluate the effectiveness and cost-effectiveness of the “PACE Steps to Success” palliative care intervention for older people in long-term care facilities, to assess the implementation process, and to identify facilitators and barriers for implementation in different countries. PACE adopts train-the-trainer methodology to train the core facilitators and support them to implement it in various countries.

In the United States, there are three models of nursing homes: partnership with hospice services, partnership with external palliative care teams (or medical palliative professionals), and facility-based professional teams. 27% of nursing homes in the United States have special programs or specially trained staff to provide hospice and palliative care.

Hong Kong: CGAT team and DIN Project

In Hong Kong, the Hong Kong Hospital Authority (HA) has published a Strategic Plan for Palliative Care in 2017 to set goals of expanding palliative home care and enhancing palliative care support to elderly residents in Residential Care Home for the Elderly (RCHE). There were 93,600 elderly who lived in RCHEs in 2016 and most had chronic diseases. 10% of these elderly pass away in hospitals yearly with average stays of 28 days and 3 submissions into hospitals six months before their deaths. Providing good quality end-of-life care is recognized by the Hong Kong government as vital to RCHEs.

There are currently two programs that aim to enhance RCHEs’ ability in providing quality palliative care. They are the Community Geriatric Assessment Team (CGAT) outreach service led by HK Hospital Authority and Dying In Nursing Home (DIN) led by Haven of Hope.

The CGAT team has provided EOL care for RCHEs in the eastern cluster of Hong Kong since January 2014, and became stronger by collaborating with palliative teams in October 2015. As of August 2018, 58% of RCHEs have joined CGAT services and received training. There were 151 patients who participated and received 4.6 months of services before death. They averaged 90 years old and 95% were wheelchair bound or bedridden. 82% of ACP was signed in at RCHEs and their ACP intentions were 100% performed in Emergency department without resuscitation.

The DIN service is a program led by Haven of Hope. It aims to offer an option for residents to choose if they wish to die in the nursing homes so as to be taken care of by familiar staff in familiar surroundings. This program has divided its operation into three key stages: preparation, long-term care during imminent death, and support after the resident passes away. Since 2000, the DIN service has served 111 residents to die in the nursing homes. When comparing medical costs, DIN residents who died in RCHEs totaled HK$299,867 and non-DIN residents in RCHEs totaled HK$384,565. It is clear that the DIN service reduced hospital admissions, hospital stays, and cost of EOL care. Assuming the DIN service model is adopted in all RCHEs, a potential cost of HK$347,184,320 can be saved by the government a year before death.

TAIWAN’s Next Move – Reducing Disease Disparity

In a survey conducted by Prof. Lin targeting six veteran homes, 89% of residents who participated did not wish to prolong their life, but only 12% of the residents made ADs. When asked the reason why they did not have ADs, residents responded that they were unaware of it, and did not know how or where to proceed. Thus, it seems residents’ willingness toward AD has no association with staff’s knowledge and attitude. In fact, up to 60% of residents would sign ADs after hearing more about them.

Taiwan’s palliative care includes patients with cancer, dementia, and many other illnesses. Based on statistics collected during 2000-2013 on Taiwan’s palliative care trend for patients with dementia, there is increased usage of palliative care for both dementia and cancer patients in the last six months of life. However, dementia patients still receive more cardiopulmonary resuscitation, invasive mechanical ventilation, and tube feeding than cancer patients. This survey shows that there is still much room for improvement and in reducing disparity.

Developing a Sustainable System for Growing Palliative Demands

Considering future development, Prof. Lin lists five major issues including:
(1) Financial Sustainability - increasing tax for alcohol, tobacco and sugary drinks to increase government funding has been adopted by many;
(2) Human Resources and Education - increasing manpower with proper staff training is a prerequisite for implementation of long-term care policy;
(3) Caregiver Support - providing caregivers with ACP/ EOL knowledge, practical skills, and psychosocial support;
(4) Environmental Design - major environmental factors can reduce total suffering by providing privacy, social interaction, positive distraction, and personalized environment; and
(5) LTC Policy and Quality of Care - encouraging partnership between medical-social professionals, and LTC facilities with palliative care services, building resources platform and the continuing support of NHI reimbursement policy.

These above issues implicate the need to increase the availability of palliative care services in LTC facilities; to advocate for more resources to support services for quality of EOL care in places like LTC facilities; to support living and dying well with choices available; and to initiate ACP discussion as well as to conduct more research in such services to evaluate effectiveness.

Finally, Prof. Lin congratulates Taiwan on its number six ranking in the 2015 Quality of Death report. Regardless of whether the participants feel Taiwan deserved this high accreditation or not, there is still much to do to make palliative care in Taiwan more accessible in all kinds of settings, especially in LTC facilities with enormous demand.