End of Life Issues: Introduction and Overview

By Tom Smith, Ph.D.

 

In the United States, it is said that there are two great fears that are rarely spoken of in polite company: Death and insanity. Death is rarely seen in public, save for the occasional funeral procession. However, it is in our face more recently following the onset of the Iraqi war and the sight of young and not so young men and women coming home in coffins. As far as insanity goes, it is said that if you are, you do not know it. Insanity can be avoided and treated. Death makes no room for either avoidance or treatment. We all shall 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 sick or into an accident or some other situation that leads to death. Then there we are, usually totally unprepared the first time. Before WWII and the discovery of antibiotics and other remedies, it was much easier to get sick and die and often it happened at home. I remember when Mr. McDonough died at home. Family washed his body, dressed him up in a suit and they had a coffin delivered and they put him on ice in the living room. Everybody stayed up all night and we had his funeral the next day and that was that.

I was 5 years old when I saw my first dead body. It was Great Uncle Joe. His funeral was the first of about four or five I went to before I was fourteen. The first death that brought me to inconsolable tears and a great grief was when my grandmother, Felicidad, died. After her, the next death that “stopped the world” for me was my dad and then after him, my beloved mate, Arthur. In between and after, there were numerous deaths and funerals I attended, but none nearly as filled with emotion and grief as grandma, dad and Art.

Many years ago, in 1969 in her book On Death and Dying, Elisabeth Kubler-Ross introduced the world to the 5 stages of dying: Denial, anger, bargaining, depression and finally, acceptance. It goes something like this: Oh, no!! I can’t have (put in here any terminal disease you can think of)! I do not like this situation at all and I am angry at the disease, the doctors and God. Isn’t there anything I can do to get out of this? Is there a cure in some other country? I am too young to die! I can’t believe this. Leave me alone. I am not hungry. Go away! Wow, I guess that this is the way it is going to be. Let’s write the will.

Since then, there has been much more research done on end-of-life physical, psychological and social processes. Advances in treating cancer and other terminal diseases, the population getting older and living longer, the AIDS pandemic, war and the threat of terrorism got the whole world more focused on how we die and what to do before it comes. Medical Science can prolong life almost indefinitely and so we are faced with ethical and moral dilemmas that, heretofore, were not before us because people just died without the heroic, extreme, extraordinary measures taken to keep them alive. This, of course, resulted in Medicine and doctors taking charge of the dying process or the medicalization of death.

Consequently, now there are advanced directives, refusal of treatment, the desire to die at home and a “Right to Die” law in the state of Oregon. People are paying much more attention to how we die and want to have some control over how they end their life. Every one is going to die. We have no control over that; but, we do have some control over how, when and where.
 

END OF LIFE ISSUES: Managing Dying Death and Beyond

FACING DEATH

This course opens with a review of the conference called Seeing the Difference: Conversations on Death and Dying: Artists, humanists and medical professionals discuss what it means to die in America in the 21st Century. In June 2000, The Doreen B. Townsend Center for the Humanities at the University of California, Berkeley hosted this highly successful two-day institute on viewing death and dying from an interdisciplinary perspective. The website provides comprehensive transcripts from the entire conference.

The conference transcript focuses on just getting over our collective denial and seeing and being aware that death is always there and one day it will become plausible. Dying is usually not beautiful and often repulsive. The dying person is frequently ignored rather than recognized and often what they want goes unasked.

With the advances in medical science it is often difficult to ascertain when death occurs. Conceptions of dying differ in a technological age that attempts to triumph over nature. There are our expectations of what can be done and the reality of death as a natural processes that we do not have to interfere with at all costs. We want to know what death is, but cannot because no one has come back to tell us. Empirically, it is out of reach. Finally, how do we close the door on life?

In 1969 in her book, On Death and Dying, Elizabeth Kubler-Ross’ central observation was that if you want to know what dying people are going through, ask them. Since, her ground breaking work, many others have followed her dictum and started conversations with the dying. The next article summarizes some of this work.

Not everybody goes through Kubler-Ross’ stages of death. Nevertheless, after 34 years, Kubler-Ross’ stage theory continues to shape thinking about dying to the point that some dying patients are “pathologized” if they do not “follow the script” as originally developed in the theory. In many cases, Kubler-Ross’ intrapsychic model is found wanting and likely to label the dying person and invalidate their experience. Are we constantly dying or living unto death? There are no tidy answers to this question.

Each and every story is different; there is no normative process. Research has demonstrated that the terminally ill do not fear or find unusually stressful conversations or questions about what they are feeling about dying. The dying need to know that it is okay to talk about their feelings and there are no right or wrong feelings and that whatever it is that they are going through is valid and real; they are not to be discounted. Usually, the more the dying can speak about their experience, the easier the journey will be.

This article is followed by a discussion of the increasing population of baby-boomers getting old and how this historical change affects end-of-life care. 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. One hundred years ago people died quickly usually of infectious disease. Now, people are living longer and dying of chronic disease. It used to be people died at home. After WWII, more people died at the hospital and there was control over the timing of death. Now, more people are choosing to die at home again.

An examination of older adults’ mental health needs at the end of life follows the above fact driven article. 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.

The next article answers the question: Just how do people die? Natural death of old age, accidents, suicide, homicide, incurable disease, deaths surrounding birth and war, terrorism and execution are addressed.

PALLIATIVE AND HOSPICE CARE

The above provocative and slightly lurid account of the many ways we die is followed by a description of an integrated model of care for the ill, including curative care, which is disease-specific and restorative in principle; palliative care, which is symptom oriented and supportive in nature and finally hospice care, which is an extension of palliative care that focuses on preparing at all levels, physical, social, emotional, spiritual and economic for death. All three approaches to care are a philosophy of care and an organized, structured, practical system for delivering care.

Sooner or later, one is faced with a terminal situation. Using cancer as an example of that circumstance, basic questions and answers about end-of-life care are considered: How long will the patient live? Can they die at home? When shall professional help be called, if at all? How can one recognize that death is near? What are the signs? How does one know for certain that the person has died? A link to resources in Spanish is provided.

Even when supplied with comprehensive facts, suggestions and directions regarding palliative and hospice care, a first hand account can fill in the ethos and pathos that accompany the journey of going down the road that leads to death, be it at home or institutional setting. This story about the very real dying of family and friends offers many practical suggestions for the care of those who move from curative to palliative to hospice and back to palliative care.

CARE GIVERS

Of course, dying is the one singular experience where the subject of most attention is the one doing the dying and not their caregivers. Nowadays, many caregivers are more than doctors, nurses, certified nursing assistants, social workers and other professionals. First of all, family 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, both professional, paraprofessional and family need to know?

This section of the course addresses a number of issues, using a question and answer format and cancer as the example situation; among them, advanced directives and living wills. Then, the value, training and personal or counter-transference issues of caregivers and counselors are considered.

In the hospital or skilled nursing facility, the patient’s wishes often go unheeded. Patients need to assert themselves and caregivers, particularly nurses, policy makers and insurance companies need to listen. Moreover, there is a dearth and need in the institutional setting for entire staff training on comforting dying residents (particularly those without family), their families and themselves. Death education is a necessary component of training in all facilities where a person may go to die.

A number of family therapists and institutional caregivers in the palliative care or hospice setting have developed a specialty dealing with death, dying and bereavement. It is a difficult focus that not only challenges the therapist’s knowledge of their own personal relationship to dying and death, but also their own family and cultural dynamics surrounding death. This choice is a great commitment that requires a thorough awareness by the therapist of their counter-transference issues surrounding any unresolved grief in their own experience of death and bereavement. With this knowledge, the therapist can empathize with the family’s suffering, but not to take it on. It is important for the therapist to process their own issues with colleagues and take sufficient breaks to avoid compassion fatigue and burnout; particularly in the private practice setting, where they can become restricted in maintaining professional contacts. On the other hand, in the institutional setting a caregiver may become frustrated by inadequate staffing, administrative demands and multiple losses of patients and lose perspective. In any case, self-care is an essential, indispensable and vital component to being a caregiver to the dying and their family.

Nevertheless, along with the stressors and challenges, there are intangible gifts of fulfillment and altruism involved in this work that are a result of assisting in bringing, peace, comfort, understanding and dignity to the dying person and their family. The need for therapists with this specialty is anticipated to increase as the population grows older. Therefore, it is crucial for those therapists that choose to make dying, death and bereavement their specialty to take care of themselves. They must feel their feelings thoroughly and pay attention to their needs and meet them. In this situation, it is better to focus on prevention of burnout than its aftermath.

Finally, the section on Care Givers concludes with a brief and very practical article on issues for the therapist to consider when exploring end-of-life issues. It catalogues a list of issues that have been identified in the literature through theory, anecdote and clinical experience as potentially influencing decisions by the patient and for the professional to consider when consulting. These decisions surround major life changing events that may be felt long after the death of the patient; for example, whether to engage or stop extraordinary lifesaving measures, or make plans for assisted or non-assisted suicide, or to stop eating and drinking water, or to make substantial changes in a will or the disposition of the estate.

It is crucial that the therapist must have adequate training before embarking upon making death, dying and bereavement a specialty and always have an experienced colleague available for consultation. One cannot go it alone. It is critical to have a treatment plan that matches the capacity of the dying person and their family to engage. For example, a protracted, comprehensive interview may be inappropriate for someone who is far along in the dying process. They may not be capable of providing information and the family may consider it a cold intrusion.

Nevertheless, certain protocols must be followed; among them, a thorough review of the situation that includes, but is not limited to keeping good notes, signing releases for medical notes and consultation, understandable and signed treatment plans, clear diagnosis of comorbid psychological conditions, assessment for suicide (or homicide by family member, business associate or other), awareness of cultural factors and expectations, family dynamics, identification of the dying person’s social support system and who is the most significant person in their life and finally, whether the patient is being coerced in any way by the system of health care providers, administrators, insurers or family members to make a decision regarding anything.

GRIEF AND BEREAVEMENT

The next section takes up the issues surrounding grief and bereavement. It begins with an overview of the subject and its associated definitions; namely, anticipatory grief, acute grief, early bereavement, normal grief and complicated grief. Each person’s grief is unique to them. No two people suffer bereavement in the same way. Grief begins before the person dies and so, even the dying person grieves. The circumstances of death, the age of the person and our relationship to them influence bereavement. Grief is an intense, bewildering and convoluted experience, filled with a plethora of emotions that can last a long time.

There is the uncomplicated grief process and then there are factors associated with a poor outcome. Usually, these factors include that a survivor is an elderly widower, the death of a child, sudden death or a stigmatic death. All this complicates grief. Groups that are vulnerable to complicated grief include confused elderly people, people with disabilities and children.

Grief comes to children as well as adults and that is something that grownups have a hard time facing. We want to protect children from such a bitter experience, but are helpless. Adults may mean well, but by not letting them grieve, we may inculcate emotional problems later in their life. This next researched piece discusses psychological tasks that appear to be essential to children’s adjustment, how children understand death and react to the death of a loved one, and how parents and teachers can help children cope with loss. It asks and answers the following questions: How do children understand death? How do children react to the death of a loved one? How can parents help? How can teachers help? What are the signs that a grieving child needs extra help? In conclusion, it offers a number of resources for more information regarding children and grief.

Support groups abound for people who are grieving all kinds of different deaths from old age, suicide, murder, AIDS, war, terror and more. However, we live in a wired, online world where, if you have a computer and internet access, no matter where you live you can find an online support group to be there for you. But what do they really offer? For genuine support, do we not need a flesh and blood person physically, rather than virtually, before us?

The next article takes a look at the value of these groups. Firstly, the bereaved does not have to leave the comfort and privacy home. Online support groups respond and assist members to face the void of loss especially at times when there is no one available to listen to during special days or late at night. They are relatively new and more recently enhanced by video conferencing capability, if that is what the person desires. Online groups can be of particular value when a large group of people from around the globe, an entire nation, city or a small town suffer a loss. Think of the event of September 11, 2001, the recent Virginia Tech massacre, where students are from all over the place, or the Columbine High School mass shooting in Colorado. Online support groups were there for these people to easily and quickly share their grief. They were swiftly overwhelmed by volume after the initial event. The groups had to be facilitated to a degree in order to be effective by encouraging strained dialogue or to suggest professional help if it appeared to be needed.

So, immediate access, the availability of “special” grief groups, the opportunity to share without embarrassment and the universality of cyberspace and grief itself demonstrates the clear value of online support groups. However, there are also limitations.

Anonymity may be breached that may threaten a vulnerable member of the group. People are at different stages of their grief and it may be difficult to maintain a continuity of communication with people who are at similar levels. Even though there can be a video presence, feedback and accountability are limited and hoaxes may be perpetrated. Additionally, the lack of professional requirements for hosts or moderators creates a difficult situation. Therefore, it appears that there are also some ethical and possibly, legal problems.

CROSS-CULTURAL ISSUES

The next section of the course takes up cross-cultural issues. Presented first is an article entitled, Culturally diverse Communities and End-of-Life Care; followed by another entitled, Diversity Issues in End-of-Life Decision-Making.

The first article asks and answers the following questions: Why is culture important? How does ethnicity influence advanced planning? What are the barriers to communication? What is the role of family? What is working? What needs to be done?

The second article addresses the diversity in the collective discourse about illness, dying and death. The focus on individual choice presupposes a world view and circumstances not all share. People with disabilities or who are poor or of different religious persuasions or ethnic backgrounds have varied approaches to end-of life decision making that are not necessarily rooted in individual identity, rights and choice. People simply do not perceive, think or feel the same way. Chinese are different from Koreans are different from Navajos are different from African-Americans are different from Hispanics are different from immigrants are different from and so on. The diversity of perspective and experience may not blend well with the health care system’s view and protocol. Few African-Americans take advantage of hospice and may fear that it is the medical establishment’s effort to hasten death and hospice care is almost unheard of in the Hispanic community.

Further examples of difference include social groups like the disabled and elderly who express serious concern about sanctioning assisted suicide. A common attitude among the non-disabled indicates that some would rather be dead than disabled, which, taken in the context of medical-industry emphasis on cost savings, could lead to withholding critical services to people with disabilities. Those who are old and exhausting their life-savings (inheritance to the survivors) or the poor may feel great coercion to refuse treatment and die so not to be a burden to family or society.

Finally, this section winds up with a discussion of the Chinese American Customs of Death and Bereavement. This personal narrative describes some components of the Chinese cultural belief systems and world views surrounding death.

MORAL AND ETHICAL CONSIDERATIONS

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. This section begins with an article that specifies terminology, definitions, and other barriers to communication; for example: What is “hastened death” or “assisted suicide”? What do we mean when we say the situation is “futile”? This is then followed by arguments FOR and AGAINST assisted suicide that include ethical and moral arguments, legal arguments, medical arguments, and arguments regarding safeguards and the slippery slope. It concludes with some observations about what happened in the Netherlands and in the state of Oregon when they respectively legalized Euthanasia and Assisted Suicide and the Death With Dignity Act, otherwise known as legalized physician assisted suicide.

There are clear cut, legal and qualitative differences between “euthanasia” and “assisted suicide”. Euthanasia is understood to be the intentional, knowing, deliberate and direct act of causing another person’s death; for example, administering a lethal injection. Assisted suicide, on the other hand is intentionally, knowingly, deliberately and directly providing the means of death to another person so that they can take their own life; for example, a physician providing a lethal dose of barbiturates to a suffering patient.

However, withholding or withdrawing medical treatment, food or fluids is not legally considered to be either euthanasia or assisted suicide. Additionally, the administration of drugs to relieve suffering and provide comfort; e.g., morphine, that may result in death is also not considered euthanasia or assisted suicide, as the intent is to relieve the suffering of the individual.

The current situation in the developed world is this: Euthanasia is a medical treatment in the Netherlands and Belgium and assisted suicide is a medical treatment in the Netherlands, Belgium and Oregon. In those places both acts are considered to be private and personal, but legislation has to do with medicine, ethics, public policy, families, children and the law. Currently, the legalization of euthanasia and assisted suicide is being considered in Great Britain, Canada, California, Vermont, Hawaii and Washington state.

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.

The review of the article, “Euthanasia, Assisted Suicide and Health Care Decisions: Protecting Yourself and Your Family ” by Rita Marker, states that the first part “discusses the reasons used by activists to promote changes in the law; the contradictions that the actual proposals have with those reasons; and the logical progression that occurs when euthanasia and assisted suicide are transformed into medical treatments. It explores the failure of so-called safeguards and outlines the impact that euthanasia and assisted suicide have on families and society in general.”

The article notes that “as the debate rages, advocates emphasize the primacy of the individual and their autonomy and the importance of the elimination of unbearable suffering. These arguments are muddled by the logical extension that if “individual autonomy” is primary, why cannot anybody and not just terminally ill people choose to legally die? Moreover, if the end of “unbearable suffering” is the goal, why is it just limited to adults? Why cannot we dispatch teens, children and infants? This back and forth has now motivated advocates to use a “step-by-step” strategy to legalize euthanasia and assisted suicide”.

Oregon is the only state in the United States to have legalized physician-assisted suicide, the Death with Dignity Act, and so it is carefully examined in Marker’s article.

In Part II of Marker’s article, how to protect yourself and family from losing control of the dying process is explained. Areas considered include: Who makes the medical decisions? What happens when one has or does not have an “advance directive” and how does its implementation differ from state to state? What are the differences from state to state between “advance directives”, “living wills”, “durable power of attorney for health care” and the “protective medical decisions document” and can a person be coerced to sign any of these documents? Who needs to sign these documents, which ones and why? Must healthcare providers honor your wishes? If something is legal, is it ethical? Is withdrawing tube feeding and fluids wrong? Is it wrong to stop offering food by spoon and water by mouth? What is treatment and what is care?

As mentioned earlier, the Karen Ann Quinlan and Terry Schiavo cases and the public concern and outcry over how they were handled demonstrate that these acts are not simply a “private and personal matter”. Society is still struggling with and will continue to debate the morality and ethics involved in euthanasia and assisted suicide.

Voices in the “first person” can offer the most valuable and appreciated insights into these ethical dilemmas and consequent decisions. Eventually, almost all of us will be confronted with these circumstances. Do we rage against the dying of the light as Dylan Thomas exhorted his father, or surrender to the art of dying as Sylvia Plath suggested? With this in mind, the next piece is a review of a video, “Personal Experiences with Death and Dying” from the University of Pennsylvania Center for Bioethics 2006, 10th Anniversary Symposium: The Legacy of the Terry Sciavo Case: Why is it so hard to die in America? The mother of Karen Ann Quinlan, Julia Duane Quinlan and the husband of Terry Schiavo, Michael Schiavo, R.N.. recount their experiences with making life and death decisions regarding the treatment and care of their loved ones.

SPIRITUAL CONSIDERATONS

Finally, this course is brought to a conclusion by taking a look at some of the spiritual considerations that come to the fore at the end of life. 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. It is beyond the scope of this paper to recount the spiritual beliefs surrounding death of so many traditions. Therefore, only three views will be considered: Agnostic, Christian and Tibetan Buddhist.

The article, “Comforting thoughts About death that Have Nothing to Do with God”, offers a perspective on death that does not include a deity or any concept of an afterlife. In an age when many religions are being replaced in the developed world by scientism and technology, this view fills a void in thinking that responds to the existential fear of death for those without faith or belief. It articulates a way of meaningfully looking at life and death, given that when we die we simply go out of existence; the idea that before we were born, we did not exist and after death we will not exist. There is no soul or afterlife. Nevertheless, we are timespace 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 spacetime. Nothing can change that. From the text: “What matters is that we get to be alive.”

There are a number of Christian attitudes and doctrines concerning death; nevertheless, the common belief shared by all is that there will be a resurrection of the body at the end of time and that one will either be in heaven or hell. The largest single group of Christians is the Roman Catholic Church with 1,115,000,000 members, about one sixth of the world’s population.

In May 2001, Illinois Catholic Conference issued the Bishop’s Pastoral Letter, “Facing the End of Life”. It considers dying and death in the context of Catholic faith which intends to bring meaning and hope and strives to grow a civilization of love in the middle of a culture of death. Humanity is called to see a fullness of life that exceeds the dimension of earthly existence. Life on earth is a penultimate reality: From earth to life we know; it is death to life that is the mystery (of faith).

There are, however, concerns about the end of life, how we will die; there are fears about suffering and the desire to control the process. The key to dying well is to live well. But, we still may want to control our end and so are encouraged to consider three crucial issues: the role of medical care at the end of life, the proper understanding of suffering and the value of suffering, and the difficulty we as Americans have with loss of independence and control.

Insofar as medical care goes, 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; that is, starving a person to death when they are capable of taking food. The other extreme is to prolong life at all costs not realizing that death is not always a defeat, but the end of the natural process of life.

The value of life and the dignity of the human person can be respected near the end of life in the context of superior palliative and hospice care, emphasizing adequate pain control. Doctors need to learn more about symptom and pain control. There is no need to suffer as one waits for natural death. As well, there is no need to prolong the dying process where the burdens of treatment outweigh the benefits. There are times when treatment should be withheld or withdrawn. Additionally, nurses and aides should be educated in treating the person and not just a disease. They have a responsibility to render adequate pain control, explain to the family what is happening and help them understand the dying process.

The Church encourages and supports the establishment of Advance Directives and other legal documents to insure proper care in the event of life-threatening illness or circumstance. There is no obligation to resort to every type of therapy to preserve life, despite the likelihood of outcome. The obligation is to alleviate suffering.

Insofar as artificial hydration and feeding go, it would be wrong to withhold same if food and water can be taken by mouth; however, if artificial means of eating and drinking only prolonging suffering, withholding food and water is merciful even if it ends in death because the object and intention is to relieve suffering. Every situation of dying is different as every person is different from another.

The Church has a particular understanding of suffering that emerges from the suffering and death of Jesus Christ on the cross. The suffering that comes from knowing that our time is almost up and that we will be losing all of our relationships, joys and pleasures of life cannot be avoided. However, the suffering that comes with pain and other emotional and psychological discomfort can be controlled and avoided with proper palliative care. Suffering has merit insofar as it unites the person with the suffering of Jesus Christ. But, to quote the text: “There are those who would twist our Catholic appreciation of suffering into a peculiar glorification of pain. This is nonsense and a perverted caricature. Being in pain is useless. Uniting one’s suffering with Christ is redemptive. This is part of our faith and a great truth that should not be lost.”

The end of life confronts us with our existential limit. It can be difficult to wait open-endedly to the unknown that is far beyond anything that we can imagine. Giving up control, open to God’s boundless and eternal love and trusting the love of those around us is a radical and empowering stance in a world preoccupied with explanation, prediction and control. Particularly, here in the United States, with our technological prowess and ability to control so much in our life, surrendering is not well accepted. We want to fight to the end, battle until our last breath. But, what good is that? The end is the same. We can choose to die in fitful agitation or sweet peace.

Again, to quote from the text: “As disciples of Jesus, the one who accepted the limitations of being human, we believe that there is a more excellent way to face the end of life than individualism, isolation, assisted suicide, and euthanasia”. This “more excellent way” can be accomplished by building a society of love, within the American culture of death, that cares for the dying with respect and dignity . We shall die as we lived.

The comments about control and the final sentence in the above paragraph move us nicely into a summation of the Tibetan Buddhist understanding of living unto death and the reality that everything is impermanent and that we really do not have that much control over anything … even our self, whatever that is.

Until recently, perhaps the last 40 years or so, since the Chinese invasion of Tibet in 1959, the teachings of the Dzogchen, Nyingma school of the Tibetan Buddhist tradition, transmitted by the supreme master Padmasambhava have remained hidden or “secret”; esoteric knowledge that was unavailable to the West. In 1992, Sogyal Rinpoche gave a great gift to the world, his book, The Tibetan Book of Living and Dying. The final article in this course summarizes and interprets for the uninitiated Western mind the salient portions of his text.

Central to Buddhist (throughout this discussion, the Tibetan tradition) 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. Also, there is the concept of no-self. We are one experience after another and what we commonly think is our self is nothing but what we remember about our experience and what others remember about us and that is an illusion we call ego. In Buddhism there is no self to die, but a consciousness that survives the end of life. Additionally, how we live our life is crucial to how we die and are reincarnated; this is the law of karma or cause and effect. By paying attention to the now at all times and taking responsibility for all of our actions, good and bad, we have some control over whether our spirit must return to life to continue the process of enlightenment or whether we achieve enlightenment in our lifetime and so do not have to be reincarnated.

It is important to learn and sustain what is called The View, or a way of seeing that pays attention without clinging or attaching to experience or even being repelled by it. The View is established and sustained by learning how to sit quietly and do nothing.

Tibetan Buddhism introduces us to the concept of bardos, or transitional experiences, the gap between the completion of one situation and the beginning of another. Every moment of our experience is a bardo. There are four fundamental bardos: The bardo of this life from beginning to end, the bardo of dying from the onset of the process to the final respiration, the bardo of after death and the experience of the Clear Light and the karmic bardo of becoming again. All bardos present opportunities for liberation, which is the point of all Buddhism. If we add the bardo of daily living and the bardo of sleep, we have six major bardos.

In Tibetan Buddhism, there is a way to help people who are dying. At the end of this journey, we die as we lived. Heartfelt communication with the dying person, seeing them as your own self is the beginning of aiding the dying. Buddhism emphasizes a peaceful death by creating and maintaining a calm and harmonious environment without great drama, weeping and wailing. If possible, it is best to die at home.

The two great Tibetan general practices for helping the dying are “Tonglen”, the “giving and receiving” and “Phowa” (po-wa), the “transference of consciousness”. These are explained in detail and must be learned. There are also specific practices: In Tibetan Buddhism, it is crucial that we die in a positive frame of mind. The last thought or emotion we have before our last breath powerfully determines the bardo of our immediate future. This is why a peaceful, compassionate atmosphere is created and the Tonglen and Phowa practices initiated.

There are also what are called the essential practices: Resting in unfettered natural mind, evoking heart essence; the traditional phowa transference of consciousness; and finally, prayer, devotion, and the blessing of enlightened or holy beings.

Just as in the Western clinical model that describes dying from sometimes months, but mostly weeks, days and hours, there is a Tibetan model that describes the dying process from observable cues. In the Tibetan model, there are two fundamental ways to die: The end of our natural life span as counted by a finite number of breaths and by accident. The bardo of dying begins when we become aware of a condition that will end in death, the outer respiration or dissolution and ultimately the ceasing of the inner respiration or dissolution. Each stage of death has its physical and psychological effect on the dying person that can be seen in external physical signs as well as inner experiences.

Then, what happens when we die is that everything dissolves including anger, desire and ignorance and then there is a gap between bardos. Our true nature is revealed, a gradual development and dawning of more and more subtle levels of consciousness ending in the most subtle consciousness of all: The Clear Light of pure consciousness.

Finally, the course offers numerous references and resources for further study.