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 Rodriguez’s 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 Gehrig’s 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 don’t want to be trapped
in a prison of tubes and high-tech machines; they don’t 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 — 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 one’s life comes from a fear and anxiety about suffering.
The fact is that the vast majority of parents don’t 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 people’s 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. Seguin’s 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 society’s responsibility to protect the disabled and the
frail take precedence over individuals’ 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 Sequin’s presentation. The position she advocated strongly countered
Wong’s 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 — 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 mind’s 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
— 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 Life’s 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 one’s desire to end one’s 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 Philip’s 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 — it’s 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 Alsop’s (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 Stiller’s 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 Frankl’s (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 Frankl’s 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, Wong’s (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. Stiller’s 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 Master’s 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 respondents’ 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 Stiller’s
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 don’t say,
oh poor Rob. Don’t 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 —
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,
you’re probably going to be more determined. You’ll amaze yourself
at what you can accomplish as long as you’re moving forward and
as long as you’re trying. We are survivors and we are fighters and
ultimately we pick life over death. I’m a real believer in making
your own quality of life."
(2) Cathy suffers from a disease called pseudo
intestinal obstruction (PIO). She couldn’t 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 I’ve 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.
. . . there’s a purpose for me being here. I mean, the amount
of research that they did through me maybe someday else’s kid
won’t have to go through the shit that I went through . . . .
My life has purpose because I know I don’t have the luxury to
sit around and waste time. I have a certain amount of time every
day, or every night and I’m going to make these hours count …
I don't know exactly what the future holds for me, but I really
feel like I’m ready for anything. I just want to enjoy each day,
live each moment. . . . Today is what is important and I’m 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.
It’s exhausting doing that, so why even bother, but if you don’t
bother, you don’t 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]e’ll 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 —
I did go through a time of thinking about
suicide quite a bit when I was really depressed. . . . It wasn’t
like I didn’t 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 — with the death
of my parents, ending the relationship with my boyfriend, my illness
and loss. It was like I couldn’t find who I was. It’s 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 can’t control aren’t part of me. I’m 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, she’s sure of her own self-identity —
"there’s still something there that’s 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
— 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 life’s 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 I’ve 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 doesn’t 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 won’t 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 — 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 God’s 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 couldn’t 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 one’s 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 doesn’t accept the doctor’s 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
individual’s 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 I’ll do the best I can for right now." Lorraine’s
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 God’s hands and she tries to
make the most of what God has given her.
The results of the study corroborate Wong’s
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 God’s will for their lives. The theme
of experiencing the present moment is consistent with Frankl’s (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 — 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 don’t want to die in pain,
I don’t 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 — 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 Frankl’s
logotherapy (1959) and Wong’s 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 — what one gives to
the world in terms of one’s creations; (2) experiential values —
what one takes from experiences; and (3) attitudinal values — the
stand one takes to face one’s 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 — to choose
one’s attitude in any given set of circumstances, to choose one’s
own way" (Frankl, 1959, p.75).
Wong’s 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 one’s 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 — 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 — 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 people’s existential needs when they
are in trying circumstances. Wong’s (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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