The destiny of all people is to live life and die. Individual lifespans vary from person to person, and different factors affect how long a person lives, including genetics, environment, illness, and accident. Some people die relatively young, while others live long lives and eventually pass away due to old age, frailty, and terminal illness.
Jump ahead to these sections:
- What is the Dying Person’s Bill of Rights?
- What’s the Purpose of the Dying Person’s Bill of Rights?
- What’s Included in The Dying Person’s Bill of Rights?
- How Can You Make Sure You or a Loved One Get Quality End-of-Life Care?
Certain rights exist to ensure an individual's dignity as they age and face the end of life. The average lifespan in the United States continues to grow longer, and it’s important to understand that each person has the right to live out their remaining time with certain protections afforded to the dying.
What is the Dying Person’s Bill of Rights?
The Dying Person's Bill of Rights gives meaning to a dying person's right to die a good death with dignity. This blueprint goes beyond providing an end-of-life planning checklist. It helps ensure that everyone with decision-making power adheres to the person’s dying wishes as closely as possible.
The needs of a dying person are much the same as anyone else's. A terminally ill patient has the same fundamental needs for comfort, support, and proper care for the remainder of their time as any other patient. They have a right to dignity both in life and in death, proper deathbed etiquette by their doctors and caregivers, and freedom from pain. The bill of rights outlines the dying patient’s most basic needs as they approach their end of life.
The Dying Person’s Bill of Rights was first introduced in 1975 at a workshop sponsored by Southwestern Michigan Inservice Education Council entitled The Terminally Ill Patient and the Helping Person. Amelia Barbus, an associate professor of nursing at Wayne State University, facilitated the workshop. As a result of this workshop, the dying patient’s end-of-life rights are honored at hospitals and hospices worldwide.
David Kessler, an American expert on death and grieving, included a more comprehensive dying person’s bill of rights in his book, The Needs of the Dying. The bill of rights is a set of guidelines that create a roadmap for medical staff, caregivers, and families of the dying to follow in the care and treatment of the patient nearing the end of life.
What’s the Purpose of the Dying Person’s Bill of Rights?
The purpose of the Dying Person's Bill of Rights is to ensure that the patient's quality of life and death, including their physical, psychological, social, and spiritual wellbeing, is met. The highest possible end-of-life care includes an experience that's free from undue hardship and suffering for the dying patient, their family, and their caregivers. Every patient has a basic right to die with dignity and in a way that’s consistent with their wishes.
End-of-life care that reflects the patient’s wishes, is consistent with the highest ethical standards in medical care, and considers the patient’s family’s needs and concerns makes for a good death. The proper care for many dying individuals addresses the psychological, social, and spiritual needs of the patient and their family while working to improve their quality of life.
What’s Included in The Dying Person’s Bill of Rights?
Many facets of the Dying Person’s Bill of Rights outline how doctors, caregivers, and the patient’s family should address and treat the dying patient. This is an overall map to ensuring quality care at the end of life, and it serves many purposes. The fundamental rights of the dying patient include the following:
1. The right to be treated as a living human being until death
Dying with dignity means having the right to be treated as a living human being with autonomy for as long as possible. Many patients fear losing their identity and ability to interact with their medical team and family members because of their limitations or incapacities.
2. The right to maintain a sense of hopefulness
Amongst patients facing a terminal illness or their end of life, many remain hopeful for a cure, the discovery of a new medical treatment, or a wonder drug that will save them at the last minute.
Some remain hopeful that, as they transition to death, their final days will be comfortable and that death will be quick and relatively painless. Regardless of how realistic it is, the sense of hope motivates many patients to maintain good spirits and endure anything that might come next.
3. The right to be cared for by those who maintain a sense of hope
This patient right ensures that the doctors and caregivers responsible for the patient's care and wellbeing express some of the same hopes and desires as the patient. When the individuals caring for the dying patient mimic the patient's hopes, it softens the blows of impending death.
4. The right to express feelings and emotions about death
Remaining free to process grief and express it in ways that resonate with how the patient feels and thinks is integral to patient autonomy. The dying patient has a right to experience their journey without interference from others.
5. The right to participate in decisions concerning care
It's essential to respect and allow the dying patient to contribute to the decision-making process regarding their end-of-life care, even when the doctor disagrees with the patient’s approach to dying.
6. The right to expect continuing medical and nursing attention
A dying person whose aims are no longer to restore health but to find comfort in their final days has the right to continued medical care and attention with clearly defined treatment goals as they near death.
7. The right not to die alone
The dying patient has the right to have family, friends, and other loved ones accompany them as they transition to death. Having others present in their final moments contributes to a peaceful end.
8. The right to be free from pain
To ensure everyone's on the same page, choosing to live the last days free from pain even if it hastens death is a dying patient's fundamental right that the doctor and family should discuss. Not every doctor or family member will agree with the patient, and it's vital to clarify everyone's position ahead of time.
9. The right to have questions answered honestly
Every patient has a right to ask about their condition and know the truth about their diagnosis and prognosis. A doctor needs to feel comfortable discussing the patient’s prognosis even when it’s not favorable.
10. The right to hear the truth
A dying patient may want to know the truth about what to expect in their care and treatment, even when the news isn’t good. Many patients prefer their doctors to be honest in communicating their condition. Often, a patient’s more concerned with how the doctor delivers the message than what they have to say about their situation.
11. The right to have help from and for family in accepting my death
Many dying individuals and their families struggle with accepting death. Families tend to fall apart when dealing with the impending death of one of their members. Grief counseling should be available to all family members and the patient.
12. The right to die in peace and dignity
Many dying patients have come to terms with their death and are ready to die when the time comes. It's usually their loved ones who want to prolong the patient's life, often without considering that the patient no longer wishes to extend their life.
13. The right to retain individuality and not be judged for their choices
Dying is a very sacred and individual process to the terminally ill patient. When someone is nearing death, their decisions regarding their end of life, their spiritual needs, or any other beliefs need to be respected.
14. The right to discuss and engage in religious or spiritual experiences
Spirituality and religion are central to each individual’s beliefs. A dying person may have thoughts that don’t necessarily align with the rest of the family, doctors, or caregivers. However, every patient has the right to spiritual and religious fulfillment near the end of life.
15. The right to expect that the sanctity of the human body will be respected after death
Plans for the disposal or burial of the body after death should consider the patient's wants as much as possible. There are times when the patient cannot communicate their dying wishes, and the family or loved one must decide what best aligns with the patient's wants or desires, whenever known.
16. The right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand the person’s needs and will be able to gain some satisfaction in helping them face their death
The people who care for a dying patient play a unique role in their impending death. They have the power to facilitate a more caring, nurturing, and relaxed final transition for a person facing the end of life.
How Can You Make Sure You or a Loved One Get Quality End-of-Life Care?
Ensuring that your loved one receives the proper end-of-life care depends on your involvement in the routine care the patient’s receiving at home or at the hospital. Your presence or participation in your loved one’s care plan helps ensure a peaceful and dignified dying process for them.
You can help with redefining the purpose of their medical treatment as they get nearer to death while working with physicians to maintain control over the manner of dying.
Administering the Dying Person’s Bill of Rights
Dying with dignity isn't always guaranteed, even with the best intentions. A doctor has a huge obligation and responsibility to ensure that they provide the best medical care and treatment to their patients above all else. The support of loved ones becomes increasingly essential when ensuring that the patient’s rights are honored.
- Barbus, Amelia J., The Dying Persons Bill of Rights, American Journal of Nursing, Vol. 75, No.1, 1975, p. 99, Lippincott, Williams, & Wilkins. gvsu.edu