Living with Dignity and Palliative Counseling

Paul T. P. Wong, Ph.D.
President, INPM
and
Catherine Stiller

Euthanasia and assisted suicide continue to spark strong emotional reactions and heated debates. Proponents on both sides of the controversy have presented compelling arguments based on individual rights, compassion, medical ethics and societal responsibility. This chapter reviews some of these arguments in their societal and personal contexts and introduces palliative counseling as an alternative approach in responding to the end-of-life issues.

Background

In November 1994, Robert Latimer of Saskatchewan, Canada was convicted of second-degree murder for killing his 12-year old daughter, Tracy, who suffered from a severe form of cerebral palsy. She was confined to a wheel chair and feeding her was a daily struggle. She had undergone numerous surgeries. When she needed another operation because of a dislocated a hip, Robert decided that she had suffered enough. One Sunday, in October 1993, when his wife and children attended a morning church service, he put Tracy in the cab of a pickup truck and filled the cab with carbon monoxide; his motive was compassion.

The trial attracted a great deal of pubic attention. Various right-to-die groups clamored for an amendment to the Criminal Code of Canada. The Dying with Dignity Society and Right to Die Society argued that those who are terminally ill or suffer from chronic conditions should be legally entitled to end their lives with the help of a physician. Many parents with a severely disabled child joined the Victoria-based Right to Die Society of Canada in lobbying the federal government for legislation that would allow parents to mercy kill their disabled children. On the other camp of the debate, advocates for the disabled applauded the verdict. They argued that not to jail Robert would send a horrible message to disabled people: that their lives were of no value and meaning and that the State would no longer protect the lives of the disabled, the old, and the terminally ill.

The sentencing took place while the Senate Special Committee on Euthanasia and Assisted Suicide was holding public hearings. The Senate Committee was struck partly in response to Sue Rodriguezís case. She became a familiar name in Canada, because she brought her case before the Supreme Court of Canada requesting physician-assisted suicide. She suffered from an incurable, degenerative disease called amyotrophic lateral sclerosis (Lou Gehrigís disease). The Supreme Court denied her request by a vote of five to four in February 1994. In his majority opinion, the late Justice Sopinka stated that

. . . respect for human life is a fundamental principle upon which there is substantial consensus in Canadian society. The prohibition against assisted suicide reflects this consensus and is designed to protect the vulnerable who might be persuaded to commit suicide. To allow physician-assisted suicide . . . would erode the belief in the sanctity of human life and suggest that the state condones suicide. (Smith, Alter & Harder, 1994, p.9)

After 16 months of hearings and deliberations, the Special Senate Committee released its report on euthanasia and assisted suicide in June 1995. The Committee was unanimous in recommending better and more extensive palliative care. However, the Committee also voted not to amend the Criminal Code but called for a less severe penalty "where there is the essential element of compassion or mercy" (Senate of Canada, 1995, p. xi).

Thus, Canada joined other governing bodies opposed to legalized euthanasia and assisted suicide; these bodies including both the Canadian Medical Association and the American Medical Association, several US states (e.g., California, Washington, and New York) and the Committee of the House of Lords in England. Most of the concerns invoked in these debates revolved around the potential of abuse and the inevitability of the "slippery road".

Recently, another jury tried Robert Latimer and he was again found guilty of second-degree murder. On Dec.1, 1997, three years after the original sentence of life imprisonment, Robert received a reduced sentence of two years less a day. This ruling again sparked heated debates and reveals a nation deeply divided on this issue.

Over the years, there has been a shift in public opinion in favor of assisted suicide. Several recent Canadian polls, some of them simplistically worded, have indicated that an increasing percentage of people surveyed now favor legalized mercy killing. Most people believe that when the quality of life is gone, then death becomes a better alternative. They donít want to be trapped in a prison of tubes and high-tech machines; they donít want to linger on for months or years in pain and suffering. Their worst nightmare is to die a slow and painful death, alone. It is their fear of suffering and losing control that makes them favor euthanasia A sense of control is important ó people want to have control over the timing and manner of their own death.

The medical profession and government policy makers, however, still see hospice as the preferred alternative to euthanasia. They see palliative care as playing a pivotal role in caring for the terminally ill in a humane way (Byock, 1994; Scott, 1992). Dr. Byock (1994) proposed that ". . . we must tell the stories of our patients who have died well, especially those who had previously considered or who might have committed suicide, we must acknowledge, document, and call attention to the heroism of our patients and families" (p. 6). He goes on to say that the issue of euthanasia is related to fundamental human values, not just medical or bioethics. Palliative care specialist Dr. Gabor Mate believes that adequate pain relief can be provided and that "a great deal of the desire to end oneís life comes from a fear and anxiety about suffering. The fact is that the vast majority of parents donít have to suffer. The desire to hasten death expresses a fear of being out of control" (cited in Mullens, 1993, p. 1368).

Personal Reflections

At the time the Senate Committee traveled across the country listening to presentations and consulting experts, the National Advisory Council on Aging was also holding its own consultations in order to develop a position paper on the issue. The senior author of the present chapter was a member of the Council during this period. One of the presentations made to the Council was by Marilynne Seguin, Executive Director of the Dying with Dignity Society. She argued that it was more compassionate ending peopleís lives than keeping them alive in pain. She also stated that individuals with a variety of chronic conditions, such as migraine headaches, insomnia, and incontinence should qualify as candidates for physician-assisted suicide.

Ms. Seguinís position raises many disturbing questions: What kind of society would Canada become, when people, for reasons ranging from chronic fatigue to depression, should have the right to demand Government-financed, physician-assisted suicide? What would happen to courage and resilience if death became the preferred way of coping with difficult life situations? What would happen to the fundamental principle of the sanctity of life if society sanctioned the killings of those who are most vulnerable to abuse? Should societyís responsibility to protect the disabled and the frail take precedence over individualsí right to assisted suicide?

The Council debated the above and many other issues without reaching any consensus. After the Council meeting, on his flight from Ottawa to Vancouver, Wong was still troubled by Sequinís presentation. The position she advocated strongly countered Wongís personal values and convictions: killing by any other name is still killing. Killing never endows death with dignity; it always cheapens life, even when it done out of mercy. It is unfortunate that "dying with dignity", a phrased originally coined by the hospice movement, has been misapplied to assisted suicide. The hospice ideal is that dying with dignity can be achieved only when people live with dignity ó giving and receiving, loving and being loved, dreaming of sunrise in the darkness night, and appreciating the worth of being alive. Living with dignity is a precondition for dying with dignity. The emphasis should be on affirmation of life rather than the promotion of death.

The phrase "living with dignity" kept on ringing in his head. He could see with his mindís eye a cloud of witnesses who say "Yes" to life in spite of disabilities and chronic illness. He thought of the heroic people who have survived concentration camps, religious persecutions, wars, famines, accidents, traumas and tragedies, because they had a reason for living and the will to live. He thought of many individuals who have made this world a much better place because of and in spite of their pain and suffering ó people like Stephen Hawking (who has become one of the most widely known theoretical physicists and writers, in spite of suffering from amyotrophic lateral sclerosis, the same disease that afflicted Sue Rodriquez) and Terry Fox (who raised millions of dollars for research by running across Canada on one leg in spite of his cancer which had already necessitated the amputation of his other leg). His thoughts also turned to Joni Eareckson Tada (1992) who has been a quadriplegic for almost thirty years as a result of a traffic accident. She has influenced countless others with her writings and speaking engagements. She stated that her ability to minister to others in pain and suffering provided meaning in her life: "The longer I hung in there through the process of suffering, the stronger the weave in the fabric of meaning" (p. 85). These individuals and countless others have demonstrated that there can be quality of life even in the most trying of circumstances. For them, the values and meaning of life depends not so much on good health as a positive attitude towards life.

After returning to Vancouver, Wong approached one of his graduate students, Catherine Stiller, with a thesis idea: "Would you be interested in doing research on people who choose life rather than death in the face of suffering and pain. There must be hundreds of thousands people who are able to live with dignity in the face of suffering and death. We need to discover and document what sustains them." Since Catherine herself suffers from chronic migraine headaches, she readily accepted the challenge. Parts of the preliminary results of her thesis research are presented in this chapter. Prior to this presentation, however, the literature on effective palliative care and the importance of meaning, hope and faith in living with a terminal illness will be briefly and selectively reviewed. This chapter concludes with a brief introduction to palliative counseling.

Care and Meaning at Lifeís End

There is increasing evidence that proper palliative care can enable patients to live and die with dignity. For example, Massie, Gagnon & Holland (1994) found that in cancer patients, depression, a sense of hopelessness, feelings of loss of control, poorly controlled pain, limited family and social support, and treatment, rather than cancer itself, contributed to oneís desire to end oneís life. Pain control, antidepressant medication, support, and psychotherapy alleviated their suicidal feelings and enabled them to go on to live with their illness. Smith and Maher (1993) studied hospice coordinators who reported that dying individuals who experienced "good death" tend to have the following qualities: having a sense of control, discussing the practical implications of dying, exploring an afterlife, talking about religious/spiritual issues, reviewing the past, having a sense of humor, not avoiding painful truths, taking an interest in personal appearance, the presence of significant others, and participating in physical expressions of caring.

It is our belief that good palliative care should include palliative counseling, which deals with psychological and spiritual issues related to suffering and dying. When people have learned how to live with meaning and dignity in the face of suffering, then suicide is no longer an attractive alternative. For example, Coward (1994) reported that AIDS patients found meaning and purpose through reaching out, having hope, connecting with others, and having a purpose to fulfill. Fife (1995) found that the meaning people attribute to having cancer affects how they cope with this disease. Cameron (1994) interviewed a number of patients with aids (PWAs) and their significant others. She provided numerous accounts that support our view that people can live with dignity in spite of chronic conditions and terminal illness, if they have faith, hope and a sense of meaning and purpose. One of the conclusions Cameron (1994) drew from her interviews was that, in general, health care personnel are poorly prepared to help PWAs and their loved ones to deal with ethical and existential issues of death. The implication is that there is a need for compassionate and competent palliative counselors.

Cole (1994) discussed the insights he gained from reading Claire Philipís journal entries. After learning she was struck with cancer, Claire, a clinical social worker, turned to journal writing to communicate her feelings and inner struggles. In her June 15, 1991 entry, she writes:"I see that I am weeping for the waste of my own potential, too, and for the loneliness of nearly silent years in which I struggled to manage being ill. . . ." The last pages of her journal indicate an acceptance of death as well as a continued engagement with life. In spite of her weakened physical condition and lingering fevers, she still had "a few hours of creative time each day." In her last entry, even when life was ebbing away, her love for life was still evident:

I started a book I find light enough to enjoy, and I am writing, and the newsletter piece on ethics and life-threatening illness just came out in the Ohio Clinical Reporter today. That and a visit from L.C. that ranged over a few subjects and brought a few laughs ó itís still something. Let there be something, enough, every day for a while."

In spite of tremendous discomfort and pain, she proved that the human spirit can continue to grow until the very end. Cole (1994) concluded that "her journal demonstrates that is possible to live out the paradox inherent in the proverb: Live every day as if you will be able to do good for a hundred years and live every day as if it were your last."

Stewart Alsopís (1973) memoirs provided another inspiring case study. After he was told that he had an inoperable and lethal cancer, acute myeloblastic leukemia, Alsop wrote about his past, including his thoughts about suicide while waiting for another marrow test the in the hospital room. But after the first bad night, having been told of the imminence of his death, a kind of protective mechanism took over. Even though he was not a religious person, he believed that "there is certainly a mystery out there somewhere. In a way we are all religious whether we like it nor not" (p.150). Throughout the ups and downs of his illness, he grew to appreciate life and embrace death. "Even if my stay of execution turns out to be a short one, I have reason to be grateful, for a happy marriage and a reasonably long, amusing, and interesting life. I even have some reason to be grateful for the experience I have had since the June day when I climbed to the top of the dump at Needwood and realized that I was again in trouble" (p.296).

The above selected review of the literature represents just a tiny corner of the immense tapestry of the indominable humanity spirit to celebrate life in the face of suffering and death. In the next section, we want to identify the sources of meaning that enable people to say "No" to the seduction of death.

Living with Dignity

In Catherine Stillerís thesis research, we witness ordinary people demonstrating extraordinary courage and faith in defying suffering. The research question was a straightforward one: What sustains these individuals to endure chronic pain and disability? The conceptual framework guiding this research is Franklís (1959, 1969) logotherapy which posits that meaning can be found in every life situation and that having a sense of meaning and purpose enables people to live with dignity in the most horrific of circumstances. According to Franklís account, prisoners in Nazi concentration camps were able to maintain their human dignity and refused to succumb to death when they had future meanings to fulfill.

Building upon logotherapy, Wongís (1998a) research has identified several sources of personal meaning as important predictors of fulfillment and well being, namely, religion, relationship, intimacy, achievement, self-acceptance, self-transcendence, and fair treatment. Stillerís thesis research further investigates the sources of personal meaning that enable individuals to live with dignity regardless of their physical condition and external circumstances.

Subjects for this study were recruited through personal networks as well as contacts with various agencies and support groups. Prerequisites for inclusion in the study were experience of a chronic or terminal illness and their ability to articulate their experience with that illness. We were not able to recruit patients suffering from terminal illness, such as cancer or AIDS for the present study, given the time constraints for completing a Masterís thesis.

A total of 7 respondents (5 female and 2 male) participated. The age range was between 35 and 75 years of age. A semi-structured questionnaire was used as a guide to ensure that all relevant aspects were covered in each interview; however, questions were slightly adjusted for each participant in order not enhance clarity and the natural flow of the conversation.

All interviews were audiotaped and transcribed verbatim. Themes were then extracted from the transcripts. The procedure of content analysis modeled after Wong and Watt (1991). During the initial step, all statements were grouped into meaning units of paragraphs to ensure that each unit has a coherent and complete meaning. This is preferable to using sentences as meaning units, because often sentences are ambiguous and difficult to code. The second step was to identify all meaning units relevant to the research question. The third step was to code all statements relevant to the research question; the label attributed to each unit needs to accurately reflect its meaning. The fourth step was to group similar labels into themes. This fourth step actually involved a serious of revisions and was guided by both the actual content of the verbal data as well as the literature on coping with chronic disabilities and personal meaning.

To ensure the reliability of the classification, a second rater was used to classify approximately 10% of the meaning units into appropriate categories. The agreement rate was 90 % and disagreements between the second reader and researcher were resolved through discussion. The thesis advisor was also consulted regarding the appropriateness of the classifications. All respondents were later re-interviewed to confirm the most predominant theme(s) of their story as well as the general themes of their experiences with disability. Subjects were asked to comment on the relevance of themes from other respondentsí reports, but which were not specifically expressed in their own stories. This second interview confirmed the validity and trustworthiness of our classifications.

Here are some of the stories from Stillerís thesis research:

(1) Rob became a quadriplegic at the age of eighteen. He fell thirty feet from a balcony, hitting a concrete sidewalk with his ear and breaking his neck. He is on a ventilator twenty-four hours a day and has no feeling from just under his chin down to his feet. He though about suicide repeatedly during the first month. His father said, "Keep your chin up and donít say, oh poor Rob. Donít just think about yourself. Think about all you can contribute in the future, whatever that is." This conversation with his father was a turning point because his father still believed that Rob could make a useful contribution. Then Rob learned to believe in himself and focus his energy on making his dreams come true. He is not married, and has a successful and challenging career ó speaking at schools, painting, and running his own business.

Rob concluded, "an injury does not change who you are, it magnifies who you were. . . . If you were determined, youíre probably going to be more determined. Youíll amaze yourself at what you can accomplish as long as youíre moving forward and as long as youíre trying. We are survivors and we are fighters and ultimately we pick life over death. Iím a real believer in making your own quality of life."

(2) Cathy suffers from a disease called pseudo intestinal obstruction (PIO). She couldnít keep food down since she was six months old, and the doctor thought that she had a bowel obstruction, so she had her first surgery. After six similar surgeries, she was finally diagnosed as having PIO. Because so much of her small intestine has been surgically removed, she is not able to absorb the nutrients from food, and she has to undergo Total Parenateral Nutrition or TPN, which requires her to hook up to an IV every night. Her father was there to "kick me in the butt" and said, "you know, this is your life, so get used it." As a result, she learned to accept her conditions and tried to live as normal a life as possible. Now she has to deal with a blood infection called septicemia and persistent earaches. She gets urinary tract infections frequently. In spite of these chronic conditions, she is married, graduated from university, and working. She said,

A lot of times Iíve thought of suicide, that it would be so easy just to die. To this day, I can picture a way to do it that would be nice and clean and quick and easy. . . . thereís a purpose for me being here. I mean, the amount of research that they did through me maybe someday elseís kid wonít have to go through the shit that I went through . . . . My life has purpose because I know I donít have the luxury to sit around and waste time. I have a certain amount of time every day, or every night and Iím going to make these hours count Ö I don't know exactly what the future holds for me, but I really feel like Iím ready for anything. I just want to enjoy each day, live each moment. . . . Today is what is important and Iím going to make the most of it.

3) Lorraine has been diagnosed as suffering from multiple sclerosis (MS) for four years. Adjusting to MS is a constant struggle, with physical limitations, frustrations, and relapses. It is unpredictable what the next day will bring. On a bad day,

. . . everything feels like such an ordeal. I break out in cold sweats just getting dressed in the morning. Itís exhausting doing that, so why even bother, but if you donít bother, you donít go to the next step. . . . Without a faith in a God who holds my future in his hand . . . there is no coping with this disease or anything in my life. . . . [K]nowing that the God who is our Creator, our Healer, who sustains life, that he cares so much about me that he knows every hair on my head. . . . [H]eíll give you the grace to go through those times when it is difficulty. But your faith is never shaken because you just know that he knows.

(4) Leona has lupus, a part of the arthritis family. Lupus can hit any part of your body, and it is not curable. She was first diagnosed in 1989 ó

I did go through a time of thinking about suicide quite a bit when I was really depressed. . . . It wasnít like I didnít care about living. I just really, truly felt I had no value in this world. I had blow after blow after blow, all the things that I valued were suddenly taken away ó with the death of my parents, ending the relationship with my boyfriend, my illness and loss. It was like I couldnít find who I was. Itís really a strange feeling.

Then one day she watched a TV show that talked about "when you are stripped of everything, all that is left is who you are." This revelation had a profound impact on her. It really got her to realize who she was, and it brought her back to being a child. "I thought about what was I like as a child. I had a personality. I had unique qualities. . . . I never have wanted to be someone else. Finally, I realized who I really am." She found the inalienable value of who she is, a value that is not dependent on what she has or what she can do. "I found a centre in myself that even when I look at the future and worry about my job and other things, I still have a way to get back to who I am. I need to remind myself that he things I canít control arenít part of me. Iím not going to value myself depending on whether or not I work tomorrow, or whether I have a relationship." When she goes through discouragement and pain when the lupus flares up, sheís sure of her own self-identity ó "thereís still something there thatís me; that whole base there will not go away."

The above individuals have every reason for suicide. In fact, some of them have contemplated suicide. But they have more reasons to live. The following themes have been extracted from the above and additional respondents: existential questions and answers, self-transcendence, creative power, perseverance, meaningful work, support of family and friends, faith in God and spiritual values, meaning in relationship, optimism, experiencing the present moment, and a sense of autonomy and control. These themes reflect the sources of meaning and values that sustain them through trying times.

Existential questioning relates to the "why me" questions that many people ask when dealing with difficult circumstances. Each respondent, in his or her own way has pondered the question of why life circumstances have brought them to the present point and found a positive existential attribution for negative life events (Wong, 1991). For example, Jason saw it as a process of testing his faith in God. Rob also approached the question with a spiritual perspective; he has gone through the process of feeling angry with God and wondering what he had done to deserve this injury.

Self-transcendence refers to the ability of individuals to look beyond their handicaps and to contribute to the lives of others. Karen and Lorraine believe that their illness has made them more understanding of others. Dorothy believes you have to think of others that are much worse off than you are. Rob feels good about himself when he is able to make a significant contribution to others. Cathy believes that her illness serves a higher purpose ó through the medical research they did on her, maybe someone else will not have to suffer the way she did.

Creative power is the ability to be a free agent who engages in lifeís demands in creative way. The participants accept their limitations and disabilities, and yet search for new ways to overcome their handicaps on a daily basis. Dorothy recognizes that given her declining energy or ability, she has to carefully plans those things that are most important to her so she can be involved in life as fully as possible. Cathy recognizes the need to take some time to figure out how to cope with new problems, but she believes she has the creative power to find an answer to help her carry on with what is important to her. Karen notes, "There have been periods in the last year where Iíve had really, really bad physical reactions and my pain has been out of control, but somehow I manage to grit through it for a couple of days until I get back on track." Lorraine doesnít gloss over the difficulty of every day activities. Just getting dressed in the morning can be an ordeal, but she always finds ways to overcome her difficulties in order to get through each day.

Working is another source of meaning. Finding a way to carry on some sort of employment or meaningful work makes them feel useful. Since Jason can no longer manage his business, he now works in his church as a volunteer, helping others in financial planning and providing spiritual counsel. Karen values her work in the mental health field; seeing positive changes in children and their families has brought meaning into her life through work.

Another consistent theme throughout all of the interviews was the importance of family and friends in coping with illness and disability. Cathy credits the support and encouragement of her parents throughout her life in helping her endure the pain of countless surgeries and adjust to TPN. Rob believes a big part of his recovery was that his family and friends still believe in him and this makes it easier for him to believe in himself. Leona values the fact that her friends and family including her in their activities, despite the possibility that Leona wonít be able to participate. Karen was able to manage because of the practical help from friends, such as getting groceries and cleaning up her apartment on a regular basis when she was first injured. The help they receive have means much more than emotional and practical support ó it provides the social validation that they are significant individuals and they matter to their family and friends!

Spiritual values and faith in God were identified by five of the seven participants as an important source of meaning in life. For example, Karen believes that she has grown spiritually through her physical difficulties; she has learned that one can survive on faith and very little else. Jason believes that his suffering has a higher purpose and he attributes it to Godís will for his life.

Having relationships as a source of meaning differs from receiving the support of family and friends. The former focuses on the give and take in a reciprocal relationship while the latter focuses more on being recipients of practical and emotional support. All the people interviewed still felt they were contributing something important to the lives of the people around them. They believe that they can still give to others, as well as receive from them. Dorothy believes that "regardless of the little bit you contribute to life, you must be here for a reason." Jason enjoys his relationship with his wife and daughter and experiences real satisfaction that he can bring happiness to their lives. Leona believes the most valuable thing is that you know who you are and what you have to offer to others. And once you know this, you have a responsibility to give to others and in turn, receive from them.

Optimism is the belief that things can get better, that you can make it through the tough days because better days will come. Dorothy continues to believe that life is "so wonderful because things come along you never expected." Jason still believes that there will be a treatment that will help ease his pain, even though treatments in the past have not given him lasting relief. Rob says, "I stopped dwelling on things I couldnít do and started to focus on the many things I still could do." Leona recognizes that there were going to be bad days with her lupus, but she seeks to see what the good in that day can be.Autonomy can be described as having a sense of control over oneís own life. The ability to make choices about medical treatment, work situations, and personal relationships was important for some of the individuals interviewed.

Autonomy enhances their sense of agency and worth. Cathy is able to exercise some control over the medical treatments she requires. Jason doesnít accept the doctorís opinion of his limitations; he strives to push his limits and discovers what he can and cannot do on a given day. Rob says, "So far as independence goes, I never looked at myself as being overly disabled." Here is a man that cannot even breathe without a respirator and yet he has a sense of mastery over his life that many able-bodied people never achieve.

Experiencing the present moment refers to an individualís ability to be fully engaged with immediate experience. Cathy knows life is full of trials and tribulations, but she is determined to make the best of what she does each day. Jason tries to make the most of each moment, each day. He says, "I know where I am right now and Iíll do the best I can for right now." Lorraineís faith provides a focus for living within the present moment. She believes we live for today because no one is promised tomorrow. She realizes that every moment is in Godís hands and she tries to make the most of what God has given her.

The results of the study corroborate Wongís prior findings on existential attribution (Wong, 1991), self-transcendence, self-acceptance, faith, relationship, intimacy, and achievement which emphasizes creative power, perseverance, meaningful work, and autonomy (Wong, 1998b). Although this thesis research did not discover "fair treatment" as a major source of meaning (Wong, 1998b), there is some evidence that the participants are able to reach the conclusion that life has not treated them too badly by counting their blessings or accepting Godís will for their lives. The theme of experiencing the present moment is consistent with Franklís (1969) emphasis on receiving from experiences as a way of finding meaning. In sum, the present findings clearly support the hypothesis that having a sense of meaning makes life worth living even in the face of pain and suffering.

But where did the participants acquire their meanings? Religious beliefs, parental influence, family, friends, even words of wisdom from a TV show ó all have made a difference between choosing death or life. The present findings suggest vast potentials for counseling interventions.

There is already some evidence that counseling can be helpful to patients who are terminally ill. For example, Alter et al. (1996) found that telephone counseling, focusing on interpersonal relationships, role transition, and grief, was beneficial to cancer patients. Wood and Mynors-Wallis (1997) found that problem solving therapy was helpful patients in palliative care, because it enabled them to identify relevant problems and find workable solutions. Lukas (1998) demonstrated how logotherapy could provide meaning and hope to the terminal ill. Tweedie (1961) concluded that "every argument in behalf of euthanasia crumbles before the dignity of man and the existential analysis of suffering." (p. 144).

Palliative Counseling

In view of the above, palliative counseling can make a big difference when individuals are struggling with end-of-life issues. When patients turn to Dr. Kevorkian and others for assisted suicide, they are actually saying: "I donít want to die in pain, I donít want to die alone." These concerns can be met by proper palliative care. But we suggest that at a deeper level, these patients are crying for spiritual and psychological help ó they are seeking meaning, purpose and hope when everything looks so bleak. They desperately need to find some reasons for living. These spiritual and existential needs can best be met by palliative counseling.

What is palliative counseling? It may be defined as counseling that focuses on end-of-life issues and the meaning of suffering and death. It can be an integral part of palliative care, but it can also take place separately from hospice and hospital settings. In fact, all individuals who contemplate suicide because of long-term negative life conditions can benefit from palliative counseling. Different from crisis intervention, palliative counseling deals with the underlying issues of suicide and empowers individuals to explore positive meanings for living in spite of suffering. Our particular approach to palliative counseling is based on Franklís logotherapy (1959) and Wongís meaning-centred counselling (1997, 1998a, b).

The basic assumptions of meaning-centered palliative counseling are that individuals: (1) have the freedom of choice in all life situations; (2) have a primary need for meaning; (3) can find meaning in all situations; (4) can learn from palliative counseling how to live with dignity, regardless of their physical condition and life circumstances; (5) can come to appreciate the intrinsic values of life; (6) and can understand that the quality of life depends more on personal values and attitudes than on external conditions.

The first three assumptions are the three basic tenets of logotherapy: (1) freedom of will; (2) the will to meaning; and (3) the meaning of life. All individuals have the capacity for choice. The last three assumptions are derived from the three basic tenets. Frankl (1978) said, "Man is not free from conditions. But he is free to take a stand in regard to them. The conditions do not completely condition him" (p.47). Even under horrible conditions within Nazi concentration camps, human beings "can preserve a vestige of spiritual freedom of independence of mind, even in such terrible conditions of psychic and physical stress" (Frank 1959, p.74). The will to meaning is "the basic striving of man to find and fulfill meaning and purpose" (Frankl, 1969, p.35). People find fulfillment in life only to the extend they find meaning. "Being human is being always directed, and pointing to something or someone other than oneself: to a meaning to fulfill or another human being to encounter, a cause to serve or a person to love" (Frankl, 1978, p.35)

According to Frankl (1969), there are three ways to discover meaning: (1) creative values ó what one gives to the world in terms of oneís creations; (2) experiential values ó what one takes from experiences; and (3) attitudinal values ó the stand one takes to face oneís predicament. The attitudinal component is most relevant to palliative counseling. It is the defiant human spirit and a courageous and optimistic attitude that enables one to choose life from the jaws of death. "Everything can be taken from a man but one thing: the last of the human freedoms ó to choose oneís attitude in any given set of circumstances, to choose oneís own way" (Frankl, 1959, p.75).

Wongís meaning-centered counseling (1997, 1998a) incorporates a variety of cognitive-behavior interventions to achieve three goals: (1) discover positive meanings for negative life events; (2) discover meaning and purpose living; and (3) learning how to overcome difficulties to fulfilling oneís meaning and purpose. For example, existential attribution techniques are used to explore positive meanings for negative events, while life review helps clients to reconstruct new, integrative meanings of their past.

Briefly, palliative counseling addresses the following issues: death anxiety, anxiety about what happens after death, spiritual and existential issues regarding suffering and death, unresolved conflicts, unfinished business, and how to live with dignity in the face of suffering and death. By exploring with the clients the seven major pathways to meaning, i.e. religion, relationship, intimacy, self-acceptance, self-transcendence, achievement, and fair-treatment (Wong, 1998b), they will learn to discover positive meanings for living and dying.

Palliative counselors provide not only emotional support but also an important link to life. People with a terminal illness often feel cut off from humanity and from future opportunities in life. They have a profound sense of physical, social, and emotional isolation ó alone in a hospital room, away from activities of life, with no one to share their feelings and intimate thoughts. They need a human link, a voice, and an outstretched hand, to pull them away from falling headlong into a dark swamp of depression ó from an abyss of no return. They need to talk to someone who understands the depth of their despair and help them find a new direction before sinking into oblivion. This is where palliative counselors come in.

What makes palliative counseling work is a focus on relationship rather than techniques. Palliative counselors must have the compassion and empathy to enter the world of the suffering and dying. They need to have resolved their own fear of death in order to encounter their clients in an authentic, positive manner. It is through intimate interactions between counselor and client and through the exchange of life that transformation takes place in both parties. Palliative counselors not only provide social validation, but also empower their clients to find self-validation through the discovery of meaning. With advances in medicine, people are living longer, and are more likely to live through long periods of frailty and chronic impairments. More than ever before, they need meaning and purpose to carry on the arduous task of daily living (Wong, 1989) and they need to learn how to live with dignity under the deepening shadow of death (Wong, Reker, and Gesser, 1994).

The breakdown of community and family and the disintegration of traditional values have deprived many individuals of major sources of meaning. Misfortunes in life, such as terminal illness and trauma, further compound the meaning crises. Palliative counseling is intended to meet peopleís existential needs when they are in trying circumstances. Wongís (1998b) pathways to personal meaning partially capture the wisdom of living with dignity. Palliative counselors attempt to pass on this wisdom to those who see suicide as a way to escape from the burden of meaninglessness and pain. In view of the moral and ethical problems associated with legalized euthanasia, we propose that the answer to human suffering is not death, but palliative care and palliative counseling that affirms the human potential for positive meaning.

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