Chapter 1. Preparing to Die

Synopsis

Preparing to Die

Catherine Robertson, Grossmont College
Michelle Ryder, Daniel Webster College

Death and Dying

Death is a subject that most dislike talking about or even thinking about. Unfortunately, part of life is dealing with death. Inevitably, death invades our lives whether through a sudden death or a terminal illness of someone whom we know.

According to Dr. Kübler-Ross (1969, 1975), a person diagnosed with a terminal illness is likely to go through several stages of emotion when accepting that death will be the final outcome of the illness. Kübler-Ross’s stages of grief occur in the following order: denial, anger, bargaining, depression, and acceptance. While other researchers do not agree exactly with Dr. Kübler-Ross’s findings, most Western researchers do believe that honest, compassionate communication with those who are facing death is important.

A Life Span Perspective to Dying: Childhood to Young Adulthood

A teenager’s sense of immortality derives from adolescent egocentrism and the concept of the invincibility fable. When an adolescent comes to terms with the fact that he/she is dying, how the process of death will affect his/her social relationships with peers and his/her physical appearance may become of primary importance.

A Life Span Perspective to Dying: Middle to Late Adulthood

Those in late adulthood respond differently to death than those in middle or early adulthood.

Someone in middle adulthood is generally at the point of greatest responsibility in his/her life in terms of family and career. This sense of responsibility may lead someone in middle adulthood to a flurry of preparations for those loved ones and fellow workers to be left behind with his/her death.

Chances are that someone in late adulthood has participated in a life review at some level. If this older adult has not already begun a life review, the diagnosis of a terminal illness certainly becomes the impetus to do so. The more loss of loved ones, such as spouses, brothers, sisters, and friends, that this person in late adulthood has experienced, the more likely he/she will be able to reach acceptance of death without too much difficulty.

The Changing Experience of Death

Until fairly recently, doctors often did not tell patients or their families that death was the prognosis. If, by some chance, the family members figured out that their loved one was not going to get better, they were reluctant to even tell him/her. This protecting of the terminal patient from death ended up preventing the dying person from giving or receiving comfort from loved ones, making final preparations and arrangements, or making amends in attempt to heal broken relationships. Since death was not spoken of in front of the dying patient, families were also deprived of saying goodbye and expressing their love and appreciation. This silencing of all talk of death is sometimes referred to as a bad death.

A Good Death

Dr. Jeffrey Birnbaum has said about doctors with dying patients, "You have to give them (patients) permission to talk about their fears of their own death. It makes a huge, qualitative difference that allows them to take ownership over the decisions they want and how they want things to be handled."

A good death is one in which a patient is informed of his/her impending death and has his/her needs met in this important journey. The fact that dying is actually occurring must be recognized. Every dying person must accept the impending loss of life as it has been known, which includes the letting go of everyone and everything that the person has known and/or loved. This is a tremendous task for the dying person to undertake alone. Kessler (2000) has identified the needs of a dying person as:

• the need to be treated as a human being;
• the need for hope;
• the need to express emotions;
• the need to participate in his/her own care;
• the need for honesty;
• the need for spirituality;
• the need to be free of pain.

Decisions that Surround Dying: Palliative Care

When one is faced with death, a number of decisions must be made. While denial, anger, and bargaining may be long past or even revisited upon occasion, a decision as to when to trade in care that strives to find a cure for palliative care needs to be made. A circle of family and medical personnel is normally involved in the decision of whether or not or when to shift focus to palliative care. The dying patient’s voice, which may be very much influenced by where he/she is in the life span, is vital to this decision. The crucial decisions do not stop with whether or not to progress to palliative care. More important arrangements will need to be considered during the dying process.

In this video, Dr. Jeffrey Birnbaum speaks about the importance of palliative care for patients who are dying.

Decisions that Surround Dying: Hospice Care

Watch this video of Dorothy, a terminally ill patient and former nursing educator, discussing her decision about hospice care.

Decisions that Surround Dying: A Living Will

Death is more complex today than it was in the past because of many medical breakthroughs. Modern medicine has the ability to stave off death with medication, treatments, and machines that keep the body functioning long after it might have quit on its own. A living will can help if a person loses the ability to communicate his/her own wishes. With this kind of will, a person directs what medical interventions should or should not be taken during a medical crisis or the dying process. This decision needs to be made as soon as possible after a person acknowledges that death is impending. By preparing a living will, family and friends are freed from making a difficult choice on behalf of the patient.

A Controversial Decision: The Right to Die

Some terminally-ill patients would like the ability to choose to end life before the pain and degradation of a disease eradicate all his/her dignity. This choice is often referred to as the patient’s right to die. Patients who believe in their right to die might consider a physician-assisted suicide or voluntary euthanasia. Both of these practices are very controversial and illegal in most of the world except in the state of Oregon in the United States and the nation of the Netherlands in Europe. Although these actions are illegal, these practices are rarely discovered. Unless the death is a public or blatant act, it is usually not subject to prosecution.

Sharing the Journey

Once death is acknowledged, it is important for the person who is dying to not feel alone in the journey. It is beneficial to the patient, the family, and loved ones to share the journey so that there is as broad a support network as possible for all involved.

Family members and loved ones can help the patient organize and update important papers, such as a will. It is much easier for those left behind if they know the specific requests of the dying person. Active involvement of both the dying individual and his/her loved ones in the preparation of a memorial or funeral service allows for all to be able to communicate and share emotions, ideas, and fond memories.

Summary

Most of us do not like to think about or even discuss death. The reality is that death is part of life, and it should be treated as such. People who have terminal illnesses and know that they are dying benefit from a good death in which their physical and emotional needs are met. If they are able to say goodbye, make final business and funeral arrangements, and heal relationships, death may be more comfortable and bearable. Making decisions about the dying process should involve both the dying person and his/her family in effort to make the impending death easier on everyone. Sharing the dying experience with loved ones can make the transition seem much more peaceful and manageable for both the person who is dying and those who will be left behind.

Assessment: Check Your Understanding

Assessment: Check Your Understanding

Dr. Jeffrey Birnbaum

Assessment: Check Your Understanding

Assessment: Check Your Understanding