LESSONS FROM
LEGENDS
By: Kenneth J. Doka, PhD
Professor, The
Senior Consultant, The Hospice
Foundation of
In this
past year two legendary women in our field have died – Elisabeth Kübler-Ross and Dame Cicely Saunders. Both were very different. Kübler-Ross was a
lone pioneer who frequently followed her own compass. Saunders embodied her concept of team –
constantly aware of new theories and approaches and active in the professional
associations of her field, especially the International Work Group on Death,
Dying, and Bereavement, until near the end of her life.
Yet, both
shared a common bond. Both taught us
important lessons – dying is not a shameful secret that needs to be hid and dying
is more than simply a physiological event.
Both reiterated that dying people deserve to be treated sensitively as
individuals who are living until the end of their lives and that all their
needs – physical, social, spiritual, and psychological should be addressed in a
holistic manner. Dame Saunders founded
St. Christopher’s Hospice to do just that.
That hospice became the epicenter of the hospice and palliative movement
– spawning the most successful social movement of the twentieth century.
Certainly
there was recognition in the work of both that dying individuals had medical
needs that needed to be addressed. The
very development of hospice began in Saunders’ observation that persons often
died in unnecessary pain. Hospices
sought to alleviate that pain – to offer pain management and symptom control
that allowed persons to face the end of life alert, comfortable – and most
critically with dignity.
These
lessons of hospice still need to be mastered by a medical community oft
untrained in pain control and troubled by regulatory requirements that
emphasize drug control over effective pain management. This may be exacerbated by family concerns
that the patient may become “addicted” and a general fear of opioids. Even hospices constrained by late referrals
and short stays find it challenging to apply their science of pain management
and symptom control. In 2006, The
Hospice Foundation of
Yet,
there was another recognition as well – one that lies
at the heart of the lessons that Kübler-Ross and
Saunders so carefully taught. Pain is
holistic. Psychological concerns such as
anxiety, depression, and loneliness and isolation can complicate physical pain. It works the other way as well. Untreated physical pain can trigger or worsen
psychological problems such as anxiety, depression, or loneliness or isolation.
At every
stage of illness then, persons who are ill, and their families, need the
opportunity to explore the many feelings and fears that are aroused in the
course of the sickness. Edward Shneidman, one of the other pioneers in thanatology,
once said that dying persons were a “hive of affect’ struggling with a
multiplicity of sometimes complicated and conflicted feelings. Dying persons need to be listened to as they
make sense of all these confusing emotions.
This is one of tasks that all members of the hospice team – nurses,
physicians, social workers, chaplains, and volunteers – share. It is that team approach that offers a model
to other elements of the medical community.
Families
also share the responsibility. Families
though, often have to be empowered to help.
Ronald Preston noted that individuals who are dying might experience the
“Gregor Effect”.
Holistic
care means meeting spiritual needs as well.
In my writings, I have stressed here spiritual needs. The first is to
“live a meaningful life”. Erickson
spoke of the last stage of psychological development to be one of “ego
integrity vs. despair”. By this Erickson
meant that as individuals become aware of their finitude, they wish to have a
sense that their life mattered – that they made a difference. Individuals who achieve this retain a sense
of ego integrity. Those who do not fall
into despair – judging their lives as wasted.
While this is often experienced late in life, the process is generated
by a sense of life’s boundaries rather than age per se. Often the reminiscences and validation of
family and friends can reinforce the sense of meaning. Reminiscence and life review are also
facilitating. Sometimes, individuals may
need to explore deeply into their own spiritual roots to find a sense of
forgiveness and meaning that can sustain them as they approach death.
A second
need is “to die an appropriate death.”
This means that every individual has his or her own sense of what they
need to do before they die or what the ideal death will be. To some, it may mean accepting death. To others it may mean fighting to the very
end. Some may wish to talk about the
imminence of death while others seek to ignore it – remembering perhaps Woody
Allen’s quip “I do not mind dying, I just do not want to be there when it
happens”. Some may have a desire to tie
up loose ends, to forgive and be forgiven.
Others may have no such need. It
is critical that we who are privileged to be companions in this process respect
the way individuals choose to die. As Shneidman once warned “no one has to die in a state of
psychoanalytic grace!”
A final
spiritual need is “to find hope beyond the grave.”’ Each person captures a
sense of mortality in his or her own way.
There are many modes of immortality and individuals may find hope in a
number of them. For some it can be in
their descendents or accomplishments.
Certainly many may find in their own spiritual and religious beliefs of
an afterlife, transcendence, or reincarnation.
Others may see that they live in the memories of others, in the lessons
gleaned in their treatment, or even in the ongoing cycle of life. The gift of spiritual care is to explore with
individuals who are dying the ways that their spirituality speaks to them of
continuance.
The gift
of Kübler-Ross and Dame Cicely Saunders was the lessons that dying persons need
to be treated in a holistic manner so they would continue living until the
moment they died. It is a gift to family
and friends too. For when someone dies
well – free of pain, comfortable, and appropriately – this often facilitates
the grief of those surviving. Given the
unfortunate short stays of those in hospice care, the individuality of personal
needs, and the sometime complexity of families, not everyone can always die
well. Because of the legacies though of
its founders, most can die better than they once would have.
Dr. Kenneth J. Doka
will be a keynote speaker at the upcoming Florida Hospices and Palliative Care
22nd Annual Symposium, Caring for a Better Tomorrow. Dr. Kenneth J. Doka
is a Professor of Gerontology at the Graduate School of The College of
Dr.
Doka was elected President of the Association for
Death Education and Counseling in 1993.
In 1995, he was elected to the Board of Directors of the International
Work Group on Dying, Death and Bereavement and served as chair from 1997-1999. The Association for Death Education and
Counseling presented him with an Award for Outstanding Contributions in the
Field of Death Education in 1998. In
2000 Scott and White presented him an award for Outstanding Contributions to Thanatology and Hospice.
His Alma Mater Concordia College presented him with their first
Distinguished Alumnus Award.
Dr. Doka has keynoted
conferences throughout North America as well as Europe and