End of Life Issues

By Ofer Zur, Ph.D.

As I was preparing to send out today’s Clinical Update, synchronistically, it came to my attention that Costco is selling all kinds of coffins. “The Lady of Guadalupe Casket ” goes for $924.99, “The Mother Casket” for $1,299.99, and “In God’s Care Casket” sells for only $924.94. (Rushed orders are available for an extra fee, sorry, no returns.) Obviously, as the Baby Boomers inevitably face their parents’ and their own deaths attitudes and commerce are drastically changing in regard to death and dying.

In the United States, it is said that there are two great fears rarely spoken of in polite company: Death and insanity. Insanity can be avoided and treated. Death makes no room for either avoidance or treatment. We all die and there is no cure.

Most of us stay away from the dying and the specter of death until a family member, dear friend or neighbor gets terminally ill or suffers from a fatal accident. Then there we are, usually totally unprepared the first time.

Since Elisabeth Kubler-Ross’ groundbreaking work in 1969 on death and dying, there has been much more research done on end-of-life physical, psychological and social processes. Dr. Kevorkian and the tragic case of Terry Schiavo have also brought the question of “How do we die?” into the forefront of our awareness.

Some of the issues, which demand attention include the following:

  • Medical Science can prolong life almost indefinitely leaving us faced with ethical and moral dilemmas that, heretofore, were not before us. People just died without the heroic, extreme, extraordinary measures taken to keep them alive.
  • People are paying much more attention to how we die and want to have some control over how they end their life.
  • Death is certain. Dying is not a beautiful or romantic process and may even be repulsive. The dying and their wishes are frequently ignored rather than recognized.
  • We want to know what death is, but cannot truly understand it beyond the fleeting “near-death” experiences reported by a few.
  • By the year 2050, people over 85 are expected to make up 24% of older persons and 5%, numbering over 19 million, of the entire population in the United States. Currently, three-quarters of those people who die yearly are older adults.
  • Older adults want information about advance directives, palliative and hospice care and how to die comfortably at home. Most older adults fear pain, being alone when they die and that their wishes will be ignored by health practitioners.
  • There are many ways to die: Natural death of old age, accidents, suicide, homicide, incurable disease, deaths surrounding birth and war, terrorism and execution.
  • Family members are increasingly becoming the frontline caregivers for their older parents or other relatives. Consequently, they are also the primary caregivers during the dying process. What do caregivers (professional, paraprofessional and family) need to know?
  • Curative care is disease-specific and restorative in principle. Palliative care is symptom-oriented and supportive in nature. Hospice care is an extension of palliative care and focuses on preparing, at all levels (physical, social, emotional, spiritual and economic), for death.
  • There many questions associated with death and dying, most of which cannot be answered. These include: “How long will the patient live?” “Can the patient die at home?” “When will professional assistance be used, if at all?” “How can one recognize that death is near?” “What are the signs that death is imminent?” “How does one know for certain that the person has died?”
  • Some of the issues considered by caregivers as death approaches include whether or not to engage or stop extraordinary lifesaving measures, whether to make plans for assisted or non-assisted suicide, whether or not to stop feeding or hydration, and whether or not to make substantial changes in a will or the disposition of the estate.
  • No two people suffer bereavement in the same way. Grief begins before the person dies and even the dying person grieves. The circumstances of death, the age of the dying person and our relationship with that person all influence bereavement. Grief is an intense, bewildering and convoluted experience, filled with a plethora of emotions that can last a long time.
  • Culture and ethnicity greatly impact the decisions and rituals associated with death and dying. When caregivers or providers are culturally different from a dying person or the family, there may be barriers to communication and understanding.
  • Terminal illness, the prolongation of life in the very old, the administration of curative, palliative and, finally, hospice care, and how death occurs are fraught with profound and serious moral and ethical considerations, among them assisted suicide and euthanasia. Caregivers and providers must have an understanding of all of these issues and terms in order to be effective and helpful in the process.
  • The Karen Ann Quinlan case many years ago and the more recent Terry Schiavo case demonstrate that these ethical and moral considerations and consequent decisions are filled with personal pain, questioning, doubt, outrage, indignation and social disagreement and divisiveness.
  • Euthanasia is a medical treatment in the Netherlands and Belgium and assisted suicide is a medical treatment in the Netherlands, Belgium and Oregon.
  • In the United Kingdom, the British Medical Association’s ethics committee in May 2006 recommended that doctors end the lives of some patients “swiftly, humanely and without guilt”.
  • Advance planning for the dying can be a complex process. Having working knowledge of “advance directives”, “living wills”, “durable power of attorney for health care”, and the “protective medical decisions document” is imperative for a clinician who spends time with dying clients. Beyond the legal matters, clinicians have to have clarity regarding their own ethical, moral, and spiritual biases.
  • Most of the world’s spiritual traditions, Jewish, Hindu, Islam, Christian, Jain, Sikh, Buddhist, Taoist, Native American and Indigenous religions, Maya, Animist, Humanist, Agnostic, Atheist and other more obscure beliefs concern themselves with what happens before death, at death and after death.
  • Some say that there is no soul or afterlife. Nevertheless, we are time-space creatures; that is to say, since we are here now, we were always going to be here and when we die, we will always have been in our particular space-time.
  • Catholic faith strives to grow a civilization of love in the middle of a culture of death and says that there are two extremes to be avoided: Deliberate ending of life actively or passively; that is, lethal injection or withholding care with the intention of causing death or to prolong life at all costs not realizing that death is not always a defeat, but the end of the natural process of life.
  • Central to Buddhist teachings about life and death is the concept of impermanence. Form is emptiness and emptiness is form. Death is everywhere all the time and all things pass away. The Tibetan Book of the Dead, or The Great Liberation by Hearing in the Intermediate States, reveals the secrets of enlightened living and life after death. The first complete English translation was recently published in 2006.

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