End–of–Life Rights

As so much of our care is dependent on large institutions like hospitals and nursing homes, it is necessary for us to protect our “end-of-life rights." This basically means the right to a final passing in dignity, comfort, and respect for our preferences and advance health care directives.

What are end-of-life choices or end-of-life rights? What manner of care and treatment am I entitled at my end-of-life? What do end-of-life rights mean for a dying patient? How can I ensure that these rights are respected?

• Be prepared to be proactive in defending your or your loved one’s right to die in a peaceful and compassionate manner.
• Of the approximately 3,500 people who die in U.S. hospitals each day, many receive inadequate pain treatment or have their advance health care directives ignored.
• Only one in four U.S. hospitals have patient care policies addressing palliative care or end-of-life hospice care.
• Studies show a majority of nursing home residents do not receive optimal end-of-life care.
• Many polls show a majority of Americans support aid in dying-- what was formerly referred to as physician-assisted suicide-- for the terminally ill, but this assistance is currently legal in only a handful of U.S. states.
• Should you wish to join those who are asking for legislation and medical policy changes protecting our end-of-life rights, you have the option to join Compassion & Choices.

The goal of end-of-life rights is for all humans to die in a compassionate manner. Unfortunately, most end-of-life rights are not legally protected in the U.S. and are highly varied by state law. It may largely be your own responsibility to protect your end-of-life rights.

End-of-life 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.

Unfortunately, your right to compassionate, dignified end-of-life care is far from guaranteed. About 6,500 people die in the U.S. every day. According to end-of-life expert Stephen P. Kiernan, about half of them die in hospitals “where pain is routinely under-treated, where unconcern with the patient’s emotional condition and disregard for the patient’s family are the norm, where advance directives are often ignored, and where most lives end following the withdrawal of excessive and futile medical technology.” Furthermore, about one quarter of all deaths occur in nursing homes where, Kiernan reports, “untreated pain is common, where boredom is a fact of life, where food is substandard and care insufficient, and where too many residents are subject to neglect or abuse.”

Hospice care focuses on comfort and pain relief, and is usually employed for patients entering the final months of an terminal illness. Hospice care programs can be greatly beneficial, but far too many people never receive these services at all. While over 60% of hospitals with over 50 beds have a palliative care team, only one in four U.S. hospitals have patient care policies addressing end-of-life, hospice, or palliative care, according to a 2006 study by the American Association of Critical-Care Nurses. A study published in the July 13, 2005, Journal of the American Medical Association (JAMA), noted that a majority of nursing home residents do not receive optimal end-of-life care, and that hospice care is underutilized at nursing homes, because physicians are often unaware of their patients’ end-of-life preferences. A 1998 study published in JAMA showed 26% of nursing home patients with daily pain received no pain-relieving medication, despite the fact that all patients studied had Medicare coverage that would cover such medication costs. These findings confirm that obtaining adequate end-of-life care is not guaranteed, and it's important to know your end-of-life rights for yourself and your loved ones.

Although polls show a majority of Americans support aid in dying for the terminally ill, such assistance is currently legal in only a few U.S. states.

Again, legally defined end-of-life choices have yet to be codified. According to the American Journal of Nursing’s “The Dying Patient’s Bill of Rights,” you and your loved ones have the right:

• 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 might 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 though “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.

1. Make sure you have advance health care directives and a relative or close friend who will see that your directives are honored.
2. Make sure your family members and closest friends understand your choices for end-of-life care.
3. If you become terminally ill, make arrangements for palliative or end-of-life hospice care.
4. 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.
5. Get involved. Join the many people who are asking for legislation and medical policy changes that address end-of-life issues. For more information about legislative and medical reform and how to get involved, you can contact Compassion & Choices.

Compassion & Choices, 800-247-7421

Last Rights: Rescuing the End of Life from the Medical System, by Stephen P. Kiernan (St. Martin's Press, 2006)