Before but fading
Table of Contents (Click here to return to the full Table of Contents on the Home Page)
Advance Health Care Directives
Ageing in place
Hospice and palliative care / Caregiving
Dying with dignity / Medically assisted dying
​
Note that the legal requirements, advice and customs vary by jurisdiction, and you will need to check the suggested resources against your local circumstances.
Advance Health Care Directives
1) Source: Advance Care Planning Australia
Advance Care Planning Australia is a national project funded by the Australian Government Department of Health and Aged Care, enabling Australians to make the best choices for their future health and care.
Its’ key work includes:
- Provide advice and support on advance care planning across Australia
- Provide training and education programs for health and care professionals
- Provide advance care planning guidance for health and care professionals
- Produce bespoke information for diverse communities and specific health settings.
Links:
2) Source: Government of New South Wales, Australia
Links:
3) Source: End of Life Law & Policy in Canada, Dalhousie University, Canada
This website tells you about:
-
Options for intentionally ending life legally in Canada, including MAiD.
-
The legal status of voluntary stopping eating and drinking (VSED) and voluntary stopping personal care (VSPeC).
-
End-of-life care, including the withholding and withdrawal of potentially life-sustaining treatment.
-
Some palliative care practices such as giving potentially life-shortening drugs and palliative sedation.
-
How to use advance directives to make sure that your wishes are followed when you can no longer make decisions for yourself or communicate your wishes. These wishes can be about health care decisions like what medical treatment you would accept or refuse and personal care
-
Links to related sites with other useful information about end-of-life law and policy in Canada.
Link:
4) Source: Government of BC, Canada
Advance care planning begins by thinking about your beliefs, values and wishes regarding future health care treatment. It is about having conversations with your close family, friends and health care provider(s) so that they know the health care treatment you would agree to, or refuse, if you become incapable of expressing your own decisions.
When you write down your wishes and instructions for future health care, you are making an Advance Care Plan. An Advance Care Plan is a written summary of a capable adult’s wishes or instructions to guide a substitute decision maker if that person is asked by a physician or other health care provider to make a health care treatment decision on behalf of the adult.
Your Advance Care Plan can also include:
-
A Representation Agreement where you write your instructions and name someone to make your health and personal care decisions if you become incapable.
-
An Advance Directive with your instructions for health care that are given to your health care provider, which they must follow directly when it speaks to the care you need at the time if you become incapable.
-
An Enduring Power of Attorney where you appoint someone to make decisions about your financial affairs, business and property.
Links:
5) Source: HealthLinkBC, Canada
HealthLink BC provides reliable non-emergency health information and advice in British Columbia. Information and advice are available by telephone, our website, a mobile app and a collection of print resources.
What is an advance care plan? An advance care plan is a form. It describes the kinds of medical care you want to have if you're badly hurt or have a serious illness and can't speak for yourself. Advance care plans also let you appoint somebody to make health care decisions for you if you can't make them for yourself. The designated person is called a substitute decision-maker, or a health care representative, agent, or proxy.
Links:
6) Source: Dying with Dignity, Canada
Dying With Dignity Canada (DWDC) is the national human-rights charity committed to improving quality of dying, protecting end-of-life rights, and helping people across Canada avoid unwanted suffering.
Links:
7) Source: European Council, European Committee on Legal Cooperation
The European Committee on Legal Co-operation (CDCJ) is the Council of Europe intergovernmental body responsible for the standard-setting activities of the Council of Europe with a wide scope of competence in the field of public and private law. Its main role is to draw up standards commonly accepted by the 46 member states and to foster legal co-operation among them.
To each citizen of Europe: planning for incapacity:
-
Have you made arrangements for how you will be looked after and your property and finances managed if you become incapable of doing so yourself? Will those arrangements ensure that your wishes are respected? Will they respect your individuality and values? Will you be protected from their misuse?
-
As citizens of Europe, we all have rights to self-determination. These are our rights to manage our lives and decide for ourselves. They include the right to manage and spend our own money, and to manage our property. They include our right to decide personal matters, ranging from daily decisions about what to wear and to eat, and where to go, through to major decisions about healthcare, where to live, which people to have close in our life, and so on.
-
If you lose the ability to deal with some or all of these things, there are two possibilities. The first is that arrangements that you have put in place will cover the position. These are “voluntary measures”. The second possibility is that measures not of your own making are put in place by legal procedure or by operation of law. These are “involuntary measures”.
-
In accordance with the principle of self-determination, the Council of Europe recommends that member states give voluntary measures priority over involuntary measures.
Links:
8) Source: AgeUK, United Kingdom
AgeUK is a well-known charity organization. The webpage on end of life planning offers good advice on making a will, power of attorney, living wills, what to do when someone dies, and coping with bereavement. Many of the guides can be downloaded as pdf files.
Links:
9) Source: National Institute on Aging, Government Agency, USA
NIA, one of the 27 Institutes and Centers of NIH, leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. NIA is the primary Federal agency supporting and conducting Alzheimer's disease and related dementias research.
The National Institute on Aging (NIA), part of the National Institutes of Health (NIH), was established in 1974 to improve the health and well-being of older adults through research. NIA conducts and supports genetic, biological, clinical, behavioral, social, and economic research on aging and the challenges and needs of older adults. NIA is at the forefront of scientific discovery about the nature of healthy aging to extend the healthy, active years of life. It is also the lead federal agency for Alzheimer’s disease and related dementias research.
Advance care planning involves discussing and preparing for future decisions about your medical care if you become seriously ill or unable to communicate your wishes. Having meaningful conversations with your loved ones is the most important part of advance care planning. Many people also choose to put their preferences in writing by completing legal documents called advance directives.
State and federal laws give you the right to make many health care decisions in advance so that your wishes can be honored in the event you can’t express them. It is your right, as a competent adult (a person over the age of 18), to decide whether to accept, reject or discontinue medical treatment for yourself. This includes decisions about life-sustaining treatments, such as breathing machines and feeding tubes.
One state’s advance directive does not always work in another state. Some states do honor advance directives from another state; others will honor out-of-state advance directives as long as they are similar to the state’s own law; and some states do not have an answer to this question. The best solution is if you spend a significant amount of time in more than one state, you should complete the advance directives for all the states you spend a significant amount of time in.
Links:
10) Source: American Association of Retired Persons (AARP), USA
AARP is a nonprofit, nonpartisan organization that empowers people to choose how they live as they age.
Advance directives need to be in writing. Each state has different forms and requirements for creating legal documents. Depending on where you live, a form may need to be signed by a witness or notarized.
Links:
-
Find Advance Directives Forms By State (Select your state to find free advance directive forms for where you live. You’ll find instructions on how to fill out the forms at each link.)
11) Source: National Hospice and Palliative Care Organization, USA
CaringInfo, a program of the National Hospice and Palliative Care Organization, provides free resources to educate and empower patients and caregivers to make decisions about serious illness and end-of-life care and services. CaringInfo’s goal is that all people are making informed decisions about their care. Learn more about CaringInfo.
CaringInfo provides free advance directives and instructions for each state that can be opened as a PDF. The PDF’s may be filled in online. Some states allow online notarization. The forms should be saved and stored in multiple sites. They should also be printed so that they may be formalized by witness signatures or notarized if your state so requires. The states vary in their requirements for witnesses, notarization and other specifics so review the form and its instructions carefully.
Links:
​
Ageing in place
1) Source: Dying with Dignity, Canada
Dying With Dignity Canada (DWDC) is the national human-rights charity committed to improving quality of dying, protecting end-of-life rights, and helping people across Canada avoid unwanted suffering.
The What to Consider webpage will help you to consider and address questions such as:
-
Why is it important to think about how you want to age at home?
-
What are the main concerns about aging at home, and how can they be addressed?
-
Is your home adaptable in the event you find yourself conformed to a wheelchair?
-
What are some actions a person can take to remain in the home?
-
What are the common circumstances that lead a person to decide that aging at home is no longer possible?
Links:
2) Source: AgeUK, United Kingdom
AgeUK is a well-known charity organization in the UK. Among the resources offered are tips for a more comfortable home - whether you need to adapt your home now or are just thinking about the future, it’s good to know about the kinds of changes you could make. After all, it's your home so it needs to work for you.
Links:
3) Source: National Institute on Aging, USA
NIA leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. NIA is the primary Federal agency supporting and conducting Alzheimer's disease and related dementias research.
Links:
​​
4) Source: Warner Law Offices, Charleston, West Virginia, USA
​
Warner Law Offices serves a statewide clientele in personal injury, workplace accidents, auto accidents and more on a contingent fee basis.
Warner Law Offices has developed an informative guide that explains the laws related to dementia and driving, identifies signs of unsafe driving, offers advice on discussing the topic of stopping driving, and suggests ways for individuals with dementia to maintain their independence.
As noted on their website,
“Dementia and driving is a complex issue. Many people take driving for granted, recognizing it as a standard part of the day. But what happens when a dementia diagnosis threatens safe driving skills? Unfortunately, dementia will usually lead to the revocation of a patient’s driving privileges, forcing them into a difficult transition. If your loved one has been diagnosed with dementia, it’s crucial to recognize and understand the warning signs, what the diagnosis means for their driving privileges, and how to support them through the tumultuous shift.”
Links:
Hospice and palliative care / Caregiving
1) Source: Advance Care Planning, Canada
The Advance Care Planning Canada initiative, spearheaded by the Canadian Hospice Palliative Care Association (CHPCA) since 2008, focuses on an accessible Pan-Canadian Framework for Advance Care Planning. Advance Care Planning is a process of reflection and communication. It is a time for you to reflect on your values and wishes, and to let people know what kind of health and personal care you would want in the future if you were unable to speak for yourself. It's About Conversations, It's About Wishes.
Links:
2) Source: The Canadian Virtual Hospice
The Canadian Virtual Hospice provides support and personalized information about advanced illness, palliative care, loss and grief, to people living with illness, family members, people working in healthcare, educators, and researchers. The Canadian Virtual Hospice is a division of the International Centre for Dignity and Palliative Care Inc., a registered charity.
Link:
3) Source: Alzheimer Society of Canada
The mission of the Alzheimer Society of Canada is to alleviate the personal and social consequences of Alzheimer’s disease and other dementias and to promote the search for causes, treatments and a cure.
This site has resources for people living with dementia, families, caregivers, healthcare providers and more. In addition to this very useful information, this site provides a national resource library in which you can find a broad range of helpful and informational documents, videos and links related to dementia.
Links:
4) Source: Champlain Hospice Palliative Care Program, Ontario, Canada
The Champlain Hospice Palliative Care Program contributes to high-quality hospice palliative care in Eastern Ontario. While it does not provide direct care to patients, it supports the healthcare professionals who do.
Education sessions reach thousands of people on topics such as advance care planning, grief, practical caregiver training and self-care:
-
Advance care planning - Prepare for major healthcare decisions by confirming a substitute decision maker and communicating wishes, values and beliefs.
-
Financial supports and equipment rentals - Financial supports, home and vehicle modifications, and assistive devices are available to help caregivers.
-
Self-care for caregivers - Caregivers have needs too. Learn strategies to help take care of yourself.
-
Making the most of healthcare appointments - Strategies on how to make appointments with your doctor or healthcare provider easier and more beneficial.
-
Grief & loss - 10 things to keep in mind when understanding your grief.
-
Anticipating a death - Grief strategies to explore when anticipating the death of a family member or friend.
-
What to do when someone dies - A comprehensive checklist on what to do when someone dies.
Links:
5) Source: Hospice UK
Hospice UK is a charity registered in England, Wales and Scotland. Hospice care eases the physical and emotional pain of death and dying, letting people focus on living right until the end. Hospice UK fights for hospice care for all who need it, for now and forever. Dying Matters is a campaign run by the charity, Hospice UK.
Among other topics, guidance is provided on
Death and dying, what to expect
What to expect when someone is in the last few days of life
What to expect in the last moments before death
Planning ahead
Looking for hospice care
Support for carers
Support with a bereavement
Dying matters campaign
Links:
6) Source: the National Hospice and Palliative Care Organization, Washington, DC and Virginia, USA
Founded in 1978, the National Hospice and Palliative Care Organization is the nation’s largest membership organization for providers and professionals who care for people affected by serious and life-limiting illness. Its broad community of members includes local hospice and palliative care providers, networks serving large regions of the United States, and individual professionals.
As the leading organization representing hospice and palliative care providers, NHPCO works to expand access to a proven person-centered model for healthcare—one that provides patients and their loved ones with comfort, peace, and dignity during life’s most intimate and vulnerable experiences.
Links:
7) Source: The International Association for Hospice and Palliative Care (IAHPC), Texas, USA
The International Association for Hospice and Palliative Care (IAHPC) is a not for profit organization committed to the development of palliative care world-wide. The organization believes in the philosophy that developing countries should take advantage of the experience and professional expertise accumulated in developed countries and not be expected to copy models more appropriate to affluent countries.
Links:
Dying with dignity / Medically assisted dying
Medically assisted dying (MAID) allows a dying person the choice to control their death if they decide their suffering is unbearable. Assisted dying is legal in a few jurisdictions, but remains illegal in most parts of the world.
​
1) Source: Advance Care Planning Australia
Advance Care Planning Australia is a national project funded by the Australian Government Department of Health and Aged Care, enabling Australians to make the best choices for their future health and care.
Links:
​
2) Source: Dying With Dignity, Canada
In accordance with the principles of the Canada Health Act and the Charter of Rights and Freedoms, Canadians have a right to choice when it comes to their own end-of-life journey.
Dying With Dignity Canada (DWDC) is the national human-rights charity committed to improving quality of dying, protecting end-of-life rights, and helping people across Canada avoid unwanted suffering. As the leading defender of Canadians’ end-of-life rights, Dying With
Dignity Canada has a role to play in ensuring fair access to palliative care. Through its Support Program, Dying With Dignity Canada educates Canadians and their families about palliative care and where to find it.
Links:
3) Source: DIGNITAS, UK
DIGNATUS UK is a national campaign and membership organisation campaigning for change across the UK. It believes everybody has the right to a good death, including the option of assisted dying for terminally ill, mentally competent adults. Assisted dying is It is illegal in the UK.
According to this website, around 400 million people around the world have legal access to some form of assisted dying. These laws ensure dying people do not have to suffer against their wishes.
-
Oregon, USA - In Oregon, it has been legal for terminally ill, mentally competent adults to have an assisted death since 1997.
-
Washington, USA - Washington voted in favour of an assisted dying law based on Oregon in November 2008.
-
California, USA - California’s law is based on the time tested model of Oregon. It allows assisted dying for mentally competent, terminally ill adults.
-
Canada - Canada was the first Commonwealth country to legalise assisted dying and passed a law in June 2016.
-
Switzerland - Since 1942, Switzerland has allowed assisted suicide as long as the motives are not selfish. All forms of euthanasia are against the law.
-
New Zealand - New Zealand’s law for terminally ill adults came into effect, following a public referendum, in November 2021.
-
Australia - Every state in Australia has approved an assisted dying law. Beginning with the state of Victoria in November 2017.
Link:
​
