What once was will be again.
Ancient cultures honored the dying and viewed death as a sacred
event. What we view as a primitive
culture, actually had insights that we have yet to discover. The end of life need not be the tragic ending
of life, but can be seen as the culmination of a lifetime of learning—a time to
be honored and celebrated—and one of the most, if not the most, meaningful
event in the life.
If life were viewed as the grand play that it is, we might
see the culmination of the plot of our lives as the final moment of intrigue,
the bringing together of life’s events into a meaningful and sacred
purpose. The dying person would awaken,
perhaps for the first time, to a greater awareness of who they are and what
they have done during their life on earth.
Celebration would be the inevitable response to viewing the great
adventure of life through the lens of the Hero’s Journey. It would be the ultimate return of the Prodigal
Son to loving embrace of Home.
The idea of bringing comfort and support to the end of one’s
life is not a new idea at all, but a very old and ancient one. Just as women once gave birth at home, dying
also took place at home. And just as we
have seen a reinvention of the experience of birth, so too, we will see a
reinvention of the way we experience the end of this life. A renaissance in dying is just on the
horizon.
Giving a complete history of hospice is not the purpose of
this conversation, nor is trying to say that every story of the dying can be
put into a category. But there are some
general trends in hospice, as anyone who has spent any time in the field can
attest to.
We have moved more and more from dying at home, to dying in
institutions. Death in the Intensive
Care Unit at the hospital, hooked to a myriad of noisy and impersonal machines
is a far too frequent way to exit this world.
Hospice is often not called in until the very last minute or weeks, if
at all.
Dying in a dark room of a nursing facility is another, all
too common, way of dying. Programs like
NODA (No One Dies Alone) are helping to at least provide companionship to those
who might otherwise die in complete loneliness and obscurity—forsaken even by
living family members who might be by their side for reasons not always
understood, but who remain at a distance.
Death at home, surrounded by loved ones, and attended by a
hospice team, is currently the goal of most hospice organizations. This is often a far more supported way to
pass. But what I am noticing as a
hospice volunteer and a harp practitioner that sits with people at the end of
life is that people are dying while heavily medicated with morphine or other
narcotics. This trend is somewhat
concerning and reminds me of what happened in childbirth not too many decades
ago.
To understand what is currently happening in hospice, I
think it is helpful to remember the transformation that birth has gone through
in the last 60 plus years. If you
recall, women gave birth at home for thousands of years. As modern medicine started to develop, there
was a movement towards birth in the hospital setting. The idea was to help prevent mother and
infant morbidity. What initially
happened was that there was an increase of deaths from infection. The physicians, it seemed, were not washing
their hands between patients and were inadvertently making hospital births
ultimately unsafe. When this issue was
addressed, death rates declined.
With the introduction of narcotics and other pain relief,
giving birth with uncontrolled pain seemed archaic. Why not apply the modern medicines to give
women relief from pain? “Twilight
Births” was the termed coined from the phenomena that followed. Women were completely unconscious during
birth. They would “wake up” and have to
ask whether they had a boy or girl.
Granted, the pain was gone, but they were sleeping through one of the
most joyous and sacred events of their lives.
At some point, women decided this trade off was not worth
the price they were paying. The
emergence of the natural childbirth method swept through Europe and the United
States and women became less and less willing to be absent from the birth of
their own babies.
Today, we are seeing the best of both worlds, where women
can achieve pain control, yet still be fully present to the birth of their
baby. There are now more home births
with midwives. Most hospitals now have a
Family Birth Center of some sort where the whole family is welcomed if they
want to be. The centers are child
friendly, so that the entire family can be present if that is wished. The rooms are generally larger and attractive
and comfortable. There are many options
available for water births, a birthing chair, giving birth in the same room
that you labor in, etc.
Death is also a type of birth and we are going through the
same sequence of events in hospice and the end of life care that we saw in
childbirth—institutionalization and a heavy reliance on medications. Rather than be discouraged at this, we should
take heart that just as progress and revolutionary ideas helped to transform
childbirth, so they will also begin to transform hospice and end of life
care.
Currently, narcotics are one of the cheapest and easiest
forms of patient management. Since
hospice is a Medicare benefit, Medicare is dictating the amount of money that
we spend on each patient. When there are
limited dollars to supply a certain amount of required benefits, the allocation
of resources often drives the decisions that are made at the end of life, rather
than what a person might need or want being the determining factor.
I have been at a patient bedside on numerous occasions when
the nurse has come into the room to administer morphine drops when the patient
was neither in any apparent discomfort and was already fairly unconscious. This has happened right when a family member
had just shown up. Any chance of there
being a lucid moment for the patient with anyone present in the room, just
disappeared with the administration of drugs.
I have also witnessed patients who were awake enough, refuse
medication so that they could stay awake for the music I was playing for them
and watched as the caregiver tried three or four time to insist that they must
take the pain meds.
Obviously, pain at the end of life can be an issue. But, when did we decide that dying was
painful? Has hospice care come to the
point where it is merely defined as pain control? Certainly, pain should be addressed and no
one should suffer from uncontrolled pain at the end of life. But what I am witnessing does not look like
pain meds given as needed. Often, they
are given on schedule, whether needed or not, resulting in what I would call
“Twilight Deaths”.
Conversations with loved ones, or a lucid moment here or
there in the process of actively dying becomes a rare exception when the dying
person is heavily medicated. One of the
few complaints I hear about hospice, is that the loved one was so medicated
that the family could not really say good-bye.
They pretty much slept through the final days of their life in a drug -induced
state.
Pain control should not be a cover for patient
management. There is so much that wants
to happen at the end of life. We treat
dying like something that we want to get over with as quickly as possible and
with as little drama as possible. Much
of the beauty and meaning of a person’s life can be discovered and mined during
these last days.
Adjunct therapies, as we like to call them, are sometimes
far more effective than medication.
Music therapy, aromatherapy, massage, spiritual counseling, being in
nature when possible, and pet therapy are just a few of the support therapies
that need to be included in hospice care.
The argument against these has nothing to do with their effectiveness or
value, but inevitably has to do with their cost. With only a limited number of Medicare
dollars, there is simply not enough money to go around.
When I have wanted something in my life, I have rarely, if
ever, been limited by a lack of resources!
The same thing is true in hospice, when we want a change badly enough,
we will find a way to support this without depending on our current
budget. Philanthropy will open doors for
supporting a new vision in hospice.
There is not a shortage of money in the world to transform end of life
care, there is a lack of imagination of how to make it possible.
Foundations can support a growing vision of providing more
than pain relief. Frankly, it is hard to
get excited about a drug-induced death.
But, I can get excited about dying in an environment that reflects and
celebrates the legacy of my life—about being surrounded with comfort, beauty,
and support.
We are limited only by our imagination. Death Centers could be a part of every
hospital. These would be private,
spacious rooms, beautifully decorated, perhaps with different themes. They would open onto a courtyard with
fountains, birds, and plants. Harp
Thanatologists would be on the staff. Spiritual
counselors trained for providing support at the end of life would be available
to help people make sense of their life and to write a coherent and beautiful
story. The life would be celebrated with
story, song, and multi-media presentations.
The Celebration of Life would happen before the person dies when time
permits. Death would be viewed, not as a
taboo and a dark and scary event, but as the opportunity to be present in one
of the most sacred events of all—the birth into whatever comes next for
them—the graduation from a life well lived.
Much of the same amenities could be provided at home as well.
Belonging to the Baby Boomer generation, I can attest to the
fact that we have always thought that we would do things better. We look at nursing homes and facilities and
say, ‘not for me’. But unless we
actively start being the change that we want to see in the world, we will die
in the same manner as those before us.
We have lived through the sexual revolution, the feminist
movement, the technology explosion, and the space age. It is time to revolutionize end of life
care. There are already so many devoting
their lives to making this happen. All
changes begin when we decide that what we are doing is no longer working. It is time to dream a bigger dream and then
find those that have the resources to make it happen help us transform the end
of life to a time of high growth in an environment of beauty, love, and
support.
When hospice is merely defined as a Medicare benefit, we
have lost the power of the role that it can play in society. Hospice can include Medicare, but should
never be limited by it. New players must
be brought into the game and a new and broader vision created for its future.
