PhD Research Progress
The Association Between Quality of Death and Family
Structure and Other Potential Factors.

Liu Ruosu (D2)2024.04.24

OUTLINE• Introduction
GlobalChina• What’s known• What’s unknown• Conceptual framework• Methods• Implications• References1

Introduction - Aging
Proportion ofpopulation aged 65
and above (olderadults)
aging rate

>7% = aging society>14% = aged society>21% = super-aging society e.g.
JapanAccording to World Population Prospects 2022,
The aging rate is growing more rapidly than the population
below 65 years old across the world.
Which means….
1. 10% in 2022 → 16% in 2050.
2. The number of older adults will be twice the numberof children under age 5
UN (https://www.un.org/en/global-issues/ageing)= Almost equivalent to the numberof children under age 122

Introduction – End-of-life

End-of-life Care (NIH)• Definition:
V.S. Palliative Care• Support and medical care given during
For people at any stage ofserious illness, even as
the time surrounding death. (usuallyearly as the day of< six months)• At hospital, facility, home, etc. diagnosis, are still
pursuing curative treatment.
• Care needed before death:
1. Physical comfort
2. Mental and emotional needs
3. Spiritual needs
4. Practical tasks (≈ Activities ofQualityDailyof Dyingand Death(QODD) (Patrick DL et al, 2001)
Living(ADL)).
The degree to which a person's preferences for dying and themoment of death agree with observations of how the person
actually died, as reported by others.
3Introduction - China

It is more
and moreAgingdifficult• Became an aging society in 2000.
• The aging rate was 13.5% in 2020 (China Population Census). to takecareof• The aging rate is projected to be above 28.7% by 2055 (Zhang JN,2021).
older
Household size is shrinking (China Statistical Yearbookfamily2021) :members
within thehousehold.
So, thewholesocietyneeds tocollaborate
4.

What’s known

Domains of QODD: (Hales S et al., 2010)(1)physical; (2) psychological; (3) social; (4) spiritual andexistential experience;(5) the nature of health care; (6) life closure and death
preparation; and (7) the circumstances of death.
So, a good death would be：
1. Minimal pain and symptom management
2. Having dignity and autonomy
3. Having family and social support
4. High quality of life
5. Having emotional and spiritual support.
6. Having the chance to prepare and plan
7. Receiving cultural and religious considerations

Limited and unequally distributed end-of-life care resources in
China (Zhang Y, Lu JH, 2017).
5• Lack of awareness of QODD

What’s known – Factors relatedtoQODD
1. Most individuals at the end of life want to be surrounded by family infamiliar settings and have a chance to say their goodbyes (Bauchner H &Fontanarosa, 2016 ).
2. Cancer (Addington-Hall & Karlsen, 1999), frailty (Gu et al., 2007), andthe presence of chronic diseases (Gibson & Schroder, 2001) all lead to alower QODD level.
3. Social support and the psychological status of the individual cansignificantly impact the QODD (Gibson & Schroder, 2001).
4. Emotion ties with family, understanding and accepting attitude toward
death, and guilt for burdening family members affect the QODD to someextent (Du P, 2013).
5. The more pathological symptoms, the lower QODD level. The greater theaccessibility, affordability, and specialization of end-of-life care, thehigher QODD level (Zhang Y, Lu JH, 2017).
6. Chinese older adults have a cultural tradition of living at home and areused to living in familiar family environments, and aging at home is thecommon choice for the majority. Older adults with deteriorating healthstatus are more likely to live with their children or others [7].
7. Most healthy older adults are financially independent, while mostunhealthy older adults depend on family members for support.
(TBC)

6What’s unknown1.Minimal pain and symptom management.
2.Dignity and autonomy. →In China, it is still
normal for family members to choose not totell the patients about the severity of thedisease, especially when they are olderadults.
3.Having family and social support.
4.High quality of life.
5.Having emotional and spiritual support.
6.Having the chance to prepare and plan. →Advanced Care Planning (ACP) is not popoularyet.
7.Receiving cultural and religious
considerations.

7Research questions &Objectives

Do older adults who prepared* for their end-of-life andbetter quality of death in China?
*preparation = having an expectation of end-of-life care.

• What are the expectations of older adults in their end-of-life?
• What is the living arrangement they want?
• Who do they want to live with?
• …
• Who is the most vulnerable? Should we direct the resources to them?
• Singe households?
• Low-income household?
• Rural residents?
• …
• Who is the most wanted caregiver?
• Family members?
• Medical professionals?
• Trained caregivers?
• …

8Conceptual Framework

Age, occupation,
educational level,
economic status, family
structure, living
arrangement, access tohealthcare, healthinsurance enrolment, etc

Degree ofmatching theexpectation

QODD

9Methods – Dataset
Chinese Longitudinal Healthy Longevity Survey (CLHLS) Series

Center for Healthy Aging and Development Studies of the National School ofDevelopment, Peking University.
Target population: older adults in China(Including 19.5 thousand centenarians, 26.8 thousand nonagenarians, 29.7
thousand octogenarians, 25.5 thousand younger elders aged 65-79, and 11.3
thousand middle-aged adults aged 35-64.)
8 waves: 1998, 2000, 2002, 2005, 2008-2009, 2011-2012, 2014 and 2017-2018.
Site: Randomly selected about half of the counties and city districts in 23
Chinese provinces.
Information collected:
Survivors: Family structure, living arrangements and proximity to children,
activities of daily living (ADL), the capacity of physical performance, selfrated health, self-evaluation of life satisfaction, cognitive functioning,chronic disease prevalence, care needs and costs, social activities, diet,smoking and drinking behaviors, psychological characteristics, economicresources, and care giving and family support among elderly respondents and 10their relatives.

Methods – Exposure variable
Before death

Score = sum (matching expectation①+ matching expectation ②+… )After death

Potential data for creating the outcome variable11

Methods – Outcome variable

Quality of death score• Ideally, using a valid scale if the dataset
fits most of the questions in it.

Alternative:
If scales are not applicable, change “thedegree of matching expectations” to theoutcome and explore the potential factorsthat affect it.

Quality of Dying and Death Questionnaire(Downey L. etal., 2010)◎ 20/31× Spiritual△ preparation and planni
12Methods – Analysis (to be studied)
Secondary data analysis
Time series analysis.
Panel data

• Descriptive analysis: Identifies patterns in timeseries data, like trends, cycles, or seasonalvariation.
• Explanative analysis: Attempts to understand thedata and the relationships within it, as well as
cause and effect.

To be studied: Which model?
13Implication

This study will be beneficial for policy-making in en
reminderWhat are the expectations of older adults in their end-of-life
What is the living arrangement they want?
Who do they want to live with?
…
Who is the most vulnerable? We should direct the resources to them.
Singe households?
Low-income household?
Rural residents?
…
Who is the most wanted caregiver?
Family members?
Medical professionals?
Trained caregivers?
…

14

References1.

UN (https://www.un.org/en/global-issues/ageing)

3.

Patrick DL, Engelberg RA, Curtis JR. Evaluating the Quality of Dying and Death. J Pain
Symptom Manage. 2001 Sep;22(3):717–26.

2.
4.
5.
6.
7.
8.
9.
10.

NIH (https://www.nia.nih.gov/health/end-life/providing-care-and-comfort-end-life#what)
Major Figures On 2020 Population Census of China(https://www.stats.gov.cn/sj/pcsj/rkpc/d7c/202111/P020211126523667366751.pdf)

Zhang JN. Characteristics of China's Demographic Structure and Projections for the Next 50
Years [Internet]. National Development Research Institute, Peking University. [cited 2023
Oct 23]. Available from: http://nsd.pku.edu.cn/sylm/gd/520498.htm
China Statistical Yearbook 2021 [Internet]. [cited 2022 Dec 8]. Available from:http://www.stats.gov.cn/tjsj/ndsj/2021/indexeh.htm

Hales S, Zimmermann C, Rodin G. Review: The quality of dying and death: a systematic reviewof measures. Palliat Med. 2010 Mar;24(2):127–44.
Zhang Y, Lu JH. Suffering or Serene: An Empirical Study on Determinants Affecting the Dying
Status of Chinese Elderlies. Population & Development. 2017;(23)2:80-91
Tu L, Yuan MY. The Impact of Community Healthcare Resources and Their Utilization on thePlace of Dying of Chinese Older Adults in an Interprovincial Perspective: An Empirical
Analysis Based on the CLHLS Mortality Sample. South China Population. 2024;(39)1Downey L, Curtis JR, Lafferty WE, Herting JR, Engelberg RA. The Quality of Dying and Death
Questionnaire (QODD): Empirical Domains and Theoretical Perspectives. J Pain Symptom Manage.
2010 Jan;39(1):9–22.

Thanks for15