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    “We have the same rights:” The Human Rights of Older Persons in

    Long-term Care in Europe June 2017

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    Het boek (Rechten en plichten)1

    Boek, wat bent gij groot, boek, wat bent gij dik.

    Waarom verberg je toch die schat aan recht en wet?

    Wat goed dat u bergt voor de mensen staat.

    't Is goed te lezen wat U ons hebt te geven:

    Vrijheid, goedheid en liefde, zelfbeschikking?

    al zijn we oud zelfs heel oud .......

    blijven of zijn, wij zijn nog steeds burgers en hebben ook dezelfde rechten.

    Een bijbel van mensenplicht en wensen, een baken van licht voor oude mensen.

    Gij hebt dat alles in vorm gegoten,

    hoe ze ons dekken, door onze plichten.

    Een weegschaal met gelijk gewicht om de waarden en noden, van de mens te meten.

    Bejaarden zijn noch niet dood, ook niet te vergeten!

    X – 1st March 2016

    The book (rights and obligations)

    Book, how big you are, book, and how thick.

    Why do you hide your wealth of laws and rights?

    So good of you to store them for people.

    It's good to read what you have to offer:

    Freedom, goodness and love, self-determination?

    and old or even very old .......

    as we are or remain, we are still citizens and have the same rights.

    A Bible of human obligations and hopes, a beacon of light for the old.

    You have given a form to all of this,

    the way that we are covered, through our obligations.

    A well-balanced scale to measure the values and needs of mankind.

    After all, the elderly aren’t yet dead, don't forget us!

    X — 1 March 2016

    1 This poem was composed and sent to the Belgian monitoring team via email by a 93-year-old resident after he took part in an interview for the project.

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    Foreword

    Growing older is a process for which we hope that, after a lifelong hard work, leads to time of relaxation and enjoyment. But for some of us, it is often connected to many worries for the quality of our lives as the strength of our body declines, making us more and more dependent on the care of others – life in long term care. This report aims to influence the respect for human rights of elderly in need for such care.

    ENNHRI has a vision for, and is working towards, the universal and effective enjoyment of human rights for everyone in Europe. In accordance, we believe that the best way of enabling that enjoyment to older persons in long-term care is by choosing a Human Rights Based Approach in national policies regarding this important and growing sector, as well as in the provision of services to each individual. This report is an important step in achieving those goals.

    Understanding the human rights situation of older persons in long-term care is the first step to improving it. I am glad to acknowledge the findings from the monitoring work carried out by six of ENNHRI’s members, in Belgium, Croatia, Germany, Hungary, Lithuania and Romania, show that care homes throughout Europe work hard to offer their residents a good quality of life. We have indeed identified a wealth of good and innovative practices across Europe. At the same time, the monitoring work lead us to numerous practices and occasions in which older persons were denied their basic human rights.

    Overall, our report shows how easily the human rights of older persons can be breached. Two key causes suggested by the findings were a lack of understanding of what human rights are (both by care workers and older persons), and resource shortages.

    While acknowledging examples of tremendous work being done by policy-makers at EU and at national level, as well as by the care sector, to give older persons the best quality of life possible, ENNHRI presents this report and recommendations to underline the importance of ensuring that human rights are placed at the heart of policy development and service provision in the long-term care sector.

    In particular, we urge European states to remember their positive obligation to address the factors that hinder the equal access of all individuals to health, including to prevention, treatment and care and to protect and uphold the physical integrity of all individuals and access to justice.

    I wish to thank our members who participated in the project, as well as ENNHRI staff for the preparation of this report. Finally, I would like to express our gratitude to all of the care homes and individuals who participated in the study. Thanks to their involvement, our knowledge of the human rights situation of older persons in long- term care in Europe is significantly clearer.

    Lora Vidović, Ombudswoman of Croatia and Chair of ENNHRI

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    Contents

    Foreword ............................................................................................................. 3

    Executive Summary ............................................................................................. 6

    Acknowledgements ........................................................................................... 15

    List of Acronyms ................................................................................................ 16

    1 Introduction ................................................................................................. 17

    1.1 The Human Rights of Older Persons and LTC Project............................. 17

    1.2 Methodology ............................................................................................ 18

    2 Human Rights and Older Persons’ LTC ..................................................... 19

    2.1 Overview of Human Rights ...................................................................... 19

    2.2 Identifying Human Rights Standards Relevant to LTC ............................. 20

    2.3 NHRI Monitoring of LTC: Review of Previous Findings ............................ 23

    3 The Ageing Population of Europe and LTC .................................................... 25

    3.1 The Ageing Population in Europe ............................................................ 25

    3.2 Organisation of and Access to LTC in Europe ......................................... 25

    3.3 Challenges in LTC systems and EU Policy Responses ........................... 28

    4 Findings of the Monitoring NHRIs in the Pilot Group .................................. 31

    4.1 The Human Rights of Older Persons Accessing LTC .............................. 31

    4.2 The Human Rights of Older Persons in Residential LTC ......................... 35

    4.2.1 The Right to Life ................................................................................ 35

    4.2.2 Prohibition of Torture, Degrading or Inhuman Treatment .................. 36

    4.2.3 The Right to Liberty, Freedom of Movement, and Use of Restraint ... 37

    4.2.4 The Right to Choice and Autonomy ................................................... 39

    4.2.5 The Right to Dignity ........................................................................... 41

    4.2.6 The Right to Privacy and Family Life ................................................. 43

    4.2.7 The Right to Participation and Social Inclusion.................................. 45

    4.2.8 Freedom of Expression ..................................................................... 47

    4.2.9 The Right to the Highest Attainable Standard of Health .................... 48

    4.2.10 The Right to an Adequate Standard of Living .................................. 49

    4.2.11 Equality and non-discrimination ....................................................... 51

    4.2.12 Access to Justice, and the Right to an Effective Remedy ................ 52

    4.4 Exit from Care: Voluntary Discharge and Palliative Care ......................... 54

    5 Conclusions ................................................................................................ 56

    5.1 Introduction .............................................................................................. 56

    5.2 Overview of Findings: The Protection and Promotion of Human Rights ... 57

    5.3 Lack of Resources for Older Persons’ LTC .............................................. 58

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    5.4 Lack of Understanding of Human Rights of Older Persons in LTC .......... 59

    5.5 Specific Challenges for Older Persons with Dementia ............................. 60

    5.6 Care Workers’ Rights and Conditions of Work ......................................... 61

    5.7 Gender as an Overarching Issue ............................................................. 63

    6 Recommendations...................................................................................... 64

    6.1 A Human Rights Based Approach to LTC ................................................ 64

    6.2 Participation of Older Persons ................................................................. 65

    6.3 Access to Justice and Effective Remedy ................................................. 66

    6.4 Investment in LTC .................................................................................... 66

    6.5 Monitoring the Human Rights of Older Persons ....................................... 67

    6.6 Awa