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How to ensure your end-of-life rights are respected
Every individual at the end of life has the right to be treated with dignity and respect during treatment and care. For all humans to feel secure in the knowledge that they will be able to die in a compassionate manner, it is important that we define, and defend, “end-of-life rights.”
“End-of-life rights” encompass the right to a final passing in dignity, comfort, and respect for one’s healthcare preferences. These rights include respecting your advance care directives and living wills; access to services such as hospice and support groups; access to a concierge physician and palliative care; and aid in dying information.
An article in the American Journal of Nursing called “The Dying Patient’s Bill of Rights” defines end-of-life rights this way:
To be treated as a living human being until death
To maintain a sense of hopefulness, however changing its focus may be
To be cared for by those who can maintain a sense of hopefulness, however changing this may be
To express feelings and emotions about approaching death in your own way
To participate in decisions concerning your care
To expect continuing medical and nursing attention even through “cure” goals have been changed to “comfort” goals
Not to die alone
To be free from pain
To have your questions answered honestly
Not to be deceived
To have help accepting death
To die in peace and dignity
To retain individuality and not be judged for decisions that may be contrary to the beliefs of others
To discuss and enlarge religious and/or spiritual experiences
To expect that the sanctity of the human body will be respected after death
To be cared for by caring, sensitive, knowledgeable people who will attempt to understand your needs
Unfortunately, most end-of-life rights are not legally protected in the US, and also highly vary by state law. According to a study by The Milbank Quarterly, of the approximately 3,500 people who die in US hospitals each day, many receive inadequate pain treatment or have their advance health care directives ignored, and only one in four US hospitals have patient care policies addressing palliative care or end-of-life hospice care.
Without legal protections, it has become increasingly vital for end-of-life health care providers and lawmakers to examine how health policy can advocate for legislation that supports your right to express your dignity and own end-of-life desires.
But what can you, as an individual, do to protect your own rights? Here are five suggestions for how to make sure your end-of-life choices are respected:
Make sure you have advance health care directives and a relative or close friend who will see that your directives are honored. Click here to learn about the importance of an advanced health care directive.
Make sure your family members and closest friends understand your choices for end-of-life care. One other step is to appoint a health care proxy who is empowered to make decisions on your behalf should you become incapacitated. For more on this decision, click here.
If you become terminally ill, make arrangements for palliative or end-of-life hospice care. For more on this decision, click here.
Make sure you have a financial power of attorney for health care agreement and a living will allowing someone to manage finances for you, including insurance paperwork, should you become incapacitated. Click here for essential information on living wills and why they matter.
Join the many who are asking for legislation and medical policy changes that address end-of-life issues. The National Hospice and Palliative Care Organization (NHPCO) offers links that help you contact your local representatives, post on social media, and take action.
Whether your needs and desires are related to a terminal illness or to age-related end-of-life physiological function, you and your loved ones have the right to receive good quality care and have your decisions followed. It may not seem like it, but doing all you can in advance to protect your healthcare decisions and choices is a sign that you, too, believe that end-of-life rights are human rights.