HOPE AND HOPELESSNESS
Unrealistic hope, in contrast to the above, it is a passive wish which
may cause despair. It may be fantasy and carries with it negative feelings.
Even with perseverance and will, the failure to acknowledge realistic
properties means frustration, disappointment and possible anger. It is
different from pessimism, which is more of a natural disposition to believe
that things will turn out badly. Hence, the expectancy of fulfilment is
constantly thwarted. It involves a failure to clearly assess what can be
changed and what cannot be changed. Obvious examples can be found in
individuals imprisoned by social conventions. Because of the negative
thoughts engendered, unrealistic hope leads to a failure to try
possibilities and opportunities to restore hope which is realistic. Unrealistic
hope leads to a feeling of despondency and a loss of meaning in life.
Whilst hope is a normal feeling to look into the future, hopelessness –
which is different, though carrying the feeling of loss of meaning and
purpose – is not normal. When things are bad, it is believed that this
situation will stay the same forever.
Hope is important in palliative care, particularly as people are very
ill and moving towards the end of life. Webster's definition3 of hope
offers two competing interpretations: one is of trust and reliance, which
implies faith and dependence, as well as the belief that whatever the
outcome, it will be for the best. This trust and reliance protects the
person from loneliness and the feeling of being abandoned. The physician's
presence and caring engenders hope. Terminally ill patients have defined
hope as an inner power directed forward towards enrichment of being. The
other interpretation is a desire accompanied by expectation or a belief in
fulfilment. Here, what separates hope from desire is the expectation of
fulfilment which may be rational, but not necessarily so. But if hope is
truly embodied in expectation, it creates miracles defying physicians'
distrust in the light of realistic data. Hope is like a personal
cheerleader in the game of life. There are many examples in medicine. One
case described to me by a doctor was of a patient suffering from a rare,
very serious cancer, who was given six months to live by the oncologist.
When the patient asked his GP whether he knew of any alternative treatment,
the latter conceded that whilst he did not know of any, this did not mean
that no alternative treatment existed. This gave the patient the resolve he
needed and he said, ‘Well, I am going to find something.’ In fact, he found
some alternative medical treatment and he came back full of confidence and
hope. He survived for another three years.
Finally, research by Breitbart and Heller4 on terminally ill
patients and meaning-centred psychotherapy found that depression,
psychosocial factors and financial problems, concern about being a burden
and hopelessness were very important factors. Seeing no meaning or value in
living hastened their wish to die. In fact, spiritual wellbeing, in
particular loss of meaning, are vital factors in despair. The importance of
a sense of meaning and purpose is a vital component of the human
experience. It gives a sense of wellbeing, of peace and contentment and
facilitates a self-transcendence and connectedness with others who matter
to us and something greater than oneself. It helps us to maintain our
dignity, honour and esteem. For some people it is expressed in a religious
context, but to others, by traditional medical and mental care providers.
This research concluded that meaning-centred intervention increased
spiritual wellbeing and a sense of meaning, reducing hopelessness and a
desire for death. A sense of meaning and purpose has also been described in
Man's Search for Meaning by the psychiatrist Viktor Frankl,5 who survived
in a concentration camp.
Reality
All this is as a preliminary to my own experience of terminal illness and
the desire to die. Radiotherapy to my bone metastases brought no relief,
simply making me feel sick, very weak and debilitated and with bowel
problems that were undignified; my maximum package of home care could not
cope. When I was admitted to the Princess Alice Hospice early in 2006, my
only wish was to die. The pain was severe, and excruciating on any
movement, and my general feeling so distressing that hope or expectancy did
not enter my conscious mind. My only thought was to get out of living with
the utmost expediency and the minimum of physical and mental awareness.
Quality of life in the sense of meaning of life and purpose are
all-important to me.
During that period, my family, and in particular my daughter, were very
concerned and loving to me. My daughter, who is a palliative care
practitioner, was at that time fighting Lord Joffe's Bill which sought to
legalize assisted dying. After two to three weeks, my pain lessened so I
began to feel a little better physically, but this also made me realize I
was not just about to be released from my situation by death. This
realization brought with it overwhelming thoughts about the emptiness of my
future and the fear of being bedridden and a burden. I was of sound mind
and certain that if I could take a lethal overdose to kill myself, I
certainly would.
I was not happy at being alive and, when my daughter visited me and I
expressed these feelings quite thoughtlessly, I suddenly became aware of
how very deeply I had hurt her. It was as if within a moment I had
destroyed her life's work. She was fighting for peace and dignity at the
end of other people's lives and yet was now seeing her own mother
regretting being alive. What did that say for her relentless work?
I felt terribly guilty and full of remorse: ‘How could I do such a terrible
thing, when I love her so and am so proud of her?’ Fortunately, my dear
son, calm and level-headed as his father was, resolved the situation and
brought back peace. The emotional intensity during those few days was like
a catharsis for me.
I resolved that I had to do everything in my power to get better. From
being unable to walk more than a few feet, with the help and encouragement
of the physiotherapist, the nurses and even total strangers, who witnessed
my daily increasing walks up and down the corridor and who called out
approvingly ‘How many is it today?’ or ‘Are you training for the marathon?’
I tackled stairs, gradually washing myself alone and slowly regaining some
independence.
At the same time too, through the cards, flowers, and warm messages I
realized that not only my family but others, too, genuinely did not want me
to die. It was a kind of telepathic communication where they had all
congregated to increase the impact, but it was not until I found hope that
my continued existence might have some purpose, that I was able to accept
the sincerity of the kind messages.
My efforts to regain my former sense of wellbeing and independence have
continued since and are still persisting. I gradually dispensed with my
home carers and refused the offer of a stair lift and various bathroom
gadgets. At first I walked just a few yards outside my house, gradually
increasing the distances, pushing my wheelchair and only sitting back in it
when too tired to proceed. Now I manage what I call my constitutional daily
walk of about one and a half miles, taking about 40 minutes. I am receiving
friends again, enjoy being taken out, shopping, visiting art exhibitions –
partly in my wheelchair, but sadly not driving anymore. I admit, sometimes
it requires a great effort to counteract my unwillingness or tiredness, but
my fear of losing my mobility and being a burden spurs me on – but now to
live, not to die! I bought a pretty, feminine walking stick decorated with
colorful flowers, which for me epitomizes my acceptance and defiance.
My gratitude to Princess Alice Hospice, to all its staff, doctors, nurses,
social workers, chaplains and volunteers, is far deeper than words can
express. It is not only for the physical palliative care which I received,
but for its profound mental and in particular spiritual help. It has
revived my interest in philosophy and restored my faith in humanity – in
the sense that I see that amidst all the exterior shallowness there is much
goodness – and I have become aware that, if one is unhappy, one is selfish
only thinking of one's own desires, but, if one feels at peace and
contented, one's thoughts are for others, particularly those who love you.
Now I find that I do not want to die yet; I feel I am still of some use to
others and I hope my deterioration and end will not be too unbearable.
Finally, to end on a lighter note, not many people are fortunate, like me,
to hear one's eulogies before lying in one's coffin!
NATIONAL HEALTH SCIENCE K RAJAARAM IRS 101025
--
You received this message because you are subscribed to the Google Groups
"Thatha_Patty" group.
To unsubscribe from this group and stop receiving emails from it, send an email
to [email protected].
To view this discussion visit
https://groups.google.com/d/msgid/thatha_patty/CAL5XZooy6ZA79MeHavHP8b6dH%3DWr2BuXCT8Ck_RM%2BRzRn2uu3g%40mail.gmail.com.
