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Final Journeys and Nearing Death Awareness:
An interview with Maggie Callanan, RN, CNRH
Interview by Matt Laughlin -- Spring 2009, Vol 5, Issue 15
UH (Unified Health): Thanks for taking the time to interview
with us. I had the opportunity to read your first co-authored
book, Final Gifts, as well as your second book Final Journeys.
I found them both to be profoundly moving, as well as very
practical resources for caregivers, the dying and their family
and friends. You’re considered one of the pioneers in the field
of hospice and the care of the dying. I was struck by how
influential your own father’s death was in shaping your professional
service today and I thought we could start there…
MC (Maggie Callanan): It’s a great place to start
because that’s how I started. When my father died I had only
been in hospice for a year, so I was still very much a novice.
And as I mentioned in Final Journeys, my father was not in
hospice, because not everybody was admitted way back
then; that’s no longer true. I was trying to piecemeal hospice
type care for him myself with our own personal resources.
My father was a diplomat and a very dignified man. I grew
up around the world and he was just a true gentlemen. When
he began to draw away from us, I resented that. He was still
alive but he was drawing away from us.
UH: As he was approaching his own death.
MC: Right. I now know it’s very common for dying people
to draw away… or maybe draw towards; we don’t know. It
is much like a woman in labor pulling away during childbirth.
The dying become very self-focused, and easily distracted
with a process that’s going on and does not include us.
As my father was a very quiet, introspective person
throughout his life, he had a tremendous impact on me when
he did speak. So, when he called me in and told me, I’ve figured
it out, I suddenly became the little child who thinks, well
if anyone can figure it out my dad can. (Laughter) I also
remember feeling so deeply that what he was about to tell me
would just change my life.
Then he said, “The odds are against us. One out of one
dies.” I remember sitting there thinking – that’s it? That’s
what this genius man has been working on for weeks?
(Laughter) But what he said thereafter charted my course.
He went on, “Then why do we go in fear? If this is the one
universal experience that we will all share, then why don’t we
know about it, why are we afraid of it, why do we feel out of
control by it?” And I thought he’s right; why?
So, I set out to find out as much about dying as I could
without having to experience it myself. I sought to dissect it,
simplify it and make it controllable and manageable for people.
That’s the path I’m on, and will probably stay on until I keel
over myself.
UH: I was moved to read that your father would pray on
his knees every night throughout his whole life, until the day
he literally could not get up from his knees. What role does
faith play in the dying process?
MC: That’s a great question. I have been fortunate for
many years to work in a multitude of different hospice settings;
multi-cultural, -ethnic, -spiritual, multi-everything. Whether with
dying Buddhists, Hindus, Christians or Jews, you start to see
some very, very interesting patterns. One profound thing is
that faith – whatever it is doesn’t matter – faith answers the
unanswerable.
UH: A faith in something beyond one’s perception?
MC: Yes. Or, faith in the benefit of suffering; or, faith that
something better awaits you; or, faith that you will be assisted
by an Almighty Being. When Pat and I wrote Final Gifts,
above all we didn’t want our work to be aligned with a religious
group, philosophy, cultural background or lifestyle. The
fact that Final Gifts is now in ten languages pretty much
speaks to the fact that what’s helpful to people is universal.
UH: Reading your work, I was struck by how well you
accomplish that. You wrote about each person’s unique
background, but what came through were some of these
reoccurring themes. I was touched, for instance, of stories
about atheists who had the same experiences that non-atheists
had and seemed to take comfort in some kind of growing
awareness that they were not alone spiritually in the dying
process – that their life or existence would continue on after
the physical body ceases. Is that a common observation?
MC: I have a very cautious answer to that. Reflecting
back on our extreme effort to not be aligned with any philosophy,
religion or particular spiritual beliefs, I saw my role in
both of the books as a reporter. I was simply a data collector
and a reporter. People have asked me for the 27 years I have
been doing this – what are my conclusions? Do I believe that
there is life after death? Do I feel my life proves the continuance
of the soul? My work has changed my life profoundly,
but you’re not going to know how. (Laughter) My job is not to
give you my philosophy. My job is to give you the facts so
you can make your own conclusions. Otherwise, I would be
narrowed, limited and unable to address the broader audiences
that benefit from the work.
UH: I can see how if you expressed opinion or a spiritual/
religious position, people might not read the work and
would definitely miss out on what can be learned about dying.
MC: Exactly. What I can tell you is that I entered hospice
from a very strict religious background; through my work
with dying, and all the religious views on that, I’ve become
much more spiritual and much less religious.
UH: That reminds me of a statement you made about hospice
not being about dying, but instead, a philosophy of living.
MC: Absolutely. If I was only allowed once in my lifetime
to have screaming headlines, (Laughter) it would be
that: hospice is about living. The philosophy that from the
moment you’re born everything should be directed towards
the quality of your life; that doesn’t end when you’re given a
terminal diagnosis. You have choices. My first job is to
reframe the experience, which is what I covered in Final
Journeys; to walk into a stranger’s life and deal head-on with
their devastation, with all of the losses that they’re feeling and
to help them see that there are still positives. We still have so
much to work with. Until the very last moment you take a
breath, you’re a living person. And to the very last moment
that our patients take their final breath, our entire focus is
squeezing out every last drop of life that we can.
UH: Part of that means helping them to feel comfortable
so they can tend to what is most meaningful and important to
them before they die.
MC: Exactly. Because people can’t soar with the eagles
when they are rooted in physical suffering. Our first priority is
always on making somebody physically comfortable, so they
are free to do the work they need to get done, the relationships
they need to address, or to simply enjoy their family and make
final memories. Memories are gifts you give to people to keep
when you’re no longer here. Those memories, in a way, keep
you present. Even though you have a terminal illness there are
still opportunities to make some wonderful memories.
That’s our focus. If you have pain or nausea, we’ll take
care of that. We’re the best in the universe for that. One
thing I say in my presentations is please, don’t ask the dentist
to deliver your baby. We wouldn’t think of that, would we?
When you’re dying, it’s your last opportunity to have the very
best, appropriate care for what you’re going through. Put
yourself in the hands of the experts; not every doctor is
trained in the very special needs of the dying. Hospice is.
UH: In your work you coined the phrase, Nearing Death
Awareness, or NDA, which is distinct from Near Death
Experiences. What is NDA and how are these different?
MC: In both books I offer a comparison of the NDE and
NDA because they are first cousins. An NDE is a sudden,
unexpected event in which a person is clinically dead and
therefore unable to communicate and only talks about the
experience after the fact – and only if they trust the people.
In a Near Death Experience, there’s a point of experiencing
life review. With our patients there are certainly signs that
they, too, experience a life review.
The most profound difference between Nearing Death
Awareness and an NDE is that the patients are talking while
the experience is actually happening. If you’re astute and not
too quick to label it something like confusion in order to make
yourself comfortable, you are afforded an opportunity to enter
the dialogue and enter the landscape, which is mind-blowing.
Families may not realize this. You’ll hear your mother say, oh
your father is living in the past, or oh, Uncle Willy is stuck on
the buddies he went to high school with. This is actually life
review. In an NDE your life is said to flash before you quickly,
like a movie reel. With our patients, it’s a more gentle process.
Patients become aware of needs as they drift through different
aspects of their lives and suddenly there’s an understanding
that time is limited. As they review these experiences, they’ll
realize they really don’t want to leave this or that undone; that’s
why these needs so often come up at the end of one’s life.
UH: It seems as though dying brings one to confront
some of these incomplete needs they have been holding
onto unconsciously.
MC: I think it is more to do with the fact that we’re a
death-denying society. We don’t view ourselves in a framework
of ever being a dying person. Before Pat and I wrote Final
Gifts, we started seeing patterns in the language and behavior
of our dying patients. We were both familiar with Dr. Raymond Moody’s book, who coined the term Near Death Experience.
His first two books were published in the 70s, Life after Life and
Reflections of Life after Life. He was a psychiatric resident sent
to provide emotional support to people who had been resuscitated
and revived. His later work has since gotten off on
different tangents, so its his first two books I recommend.
Prior to Dr. Moody’s work, very little was known about how
people dealt with dying emotionally and spiritually; what were
their fears and concerns? Elizabeth Kubler-Ross dissected
all of that for us and presented a framework, and for the first
time we started dealing with the humanity of dying. In our
work, we followed Dr. Moody’s pattern of story telling. His
first two books are so very powerful. I have shared them with
my patients who ask, what does it feel like to die? I have
worked with more that 2,000 dying patient’s experiences
now, so I have a great pool to draw from, and I can tell them
what I see and what I hear; but I obviously can’t speak from
my own experience.
UH: What are some of the reoccurring patterns or
themes that characterize Nearing Death Awareness?
MC: There are two categories: what I am experiencing
and the second, what I need to get on to a peaceful death.
The first category of what I am experiencing is the answer to
what does it feel like to die. It’s very common for our dying
patients to tell us they’re in the presence of someone we cannot
see, someone not alive. It’s usually a family member who
has predeceased them. Occasionally, a patient will talk
about someone who recently died in the news. I remember
one Navy Admiral who was very concerned about the babies
on his bed. There had just been a multiple birth covered in
the media and many of the babies had died. In his life, he
was a big goofball for kids and adored babies.
UH: So that was meaningful to him.
MC: Yes. The experiences of the dying all bear a
resemblance to what is meaningful to that patient’s life. A
golfer will talk about golf experiences; an artist will talk in
terms of beautiful colors. It’s really quite fascinating. A
shared theme is that they talk in terms of being in the presence
of someone who is not alive and they will also refer to
spiritual beings. The terminology they use is typical for their
religious beliefs. Christians speak of God, Jesus and Angels.
Other people use other terminology meaningful in their tradition.
What is fascinating is that they basically report that I am
not alone. Someone is here for me.
UH: And they’ll experience that with you in the room.
MC: Oh yeah. There was a gentleman who was dying
and I was standing on the right side of the bed holding his right
hand. He was talking very excitedly about things he had to get
finished, and then he would turn around to the left side, and
say “just a second, hold on… I’ll be with you in just a minute.”
UH: That is another theme of NDA, this notion of preparing
to travel?
MC: Yes, and this is fascinating too, Matt, because this
goes back to spiritual music throughout various traditions,
like swing low sweet chariot come and carry me home…
Metaphors for travels and journeys are quite common. The
thing that fascinates me is that our patients use metaphor
even when they’re not educated enough to know what
metaphor is. It’s just amazing to have the opportunity to deal
with all walks of life, all ages, all educational backgrounds
and all everything and yet see these very profound patterns
over and over and over again.
UH: And again, they’ll use metaphors that are contextually
meaningful to their life, right? It seems like these can be
easily missed if you’re not taught to listen for them.
MC: Incredibly easily. Hospice allows us, as clinicians,
to really know our patients, to really understand who they are.
And this affords us the opportunity to travel their unique journey,
to make sure that it’s their monogram on that journey
rather than some perceived pattern of what we think it should
be. Because we tend to know a lot about our patients, we are
much more attuned to the kind of little off-the-cuff things they
may say, and much more attuned to understanding where it fits.
I’ll give you a prime example in a hospice unit. There was
an older gentleman dying. One night, he rang the bell; when
the nurse came in he said to her, “I need to know what time
is high tide.” That was it. And how easily might she have
labeled him as simply confused? But he happened to be a
sailor; he was in the navy all his career and just loved to sail.
Well, have you ever tried to sail out on low tide? You don’t
get anywhere. There were no obvious signs to us that he was
dying earlier in the evening; he seemed okay. But this one
simple question alerted the staff to alert the wife and the family
that death may be closer than we think as he was talking
about going somewhere. His wife and kids got up and came
in; they were there when he died that night. That might have
been missed at 5 o‘clock in the morning. As patients get into
active dying there are obvious signs; fortunately, the family
was already there.
UH: Sometimes those symbolic messages will be communicated
in a dream-like way? I recall that patients will say,
“I had a dream but it really wasn’t a dream.”
MC: Yes. I ask my patients several questions every time
I see them; one of my patients teases me and calls it
“Maggie’s six”: Are you eating, are you drinking, are you
pooping, are you peeping, are you sleeping, are you dreaming?
Every single time I talk to them I open that door, and
sooner or later they’ll say, you know what, I had a dream but
it wasn’t really a dream. And we’re off and running!
Oftentimes, patients describe seeing a place of great wonder
and beauty that we can’t see; a place that again, has some
parallel to their life. A golfer saw a tournament; an environmental
engineer saw a beautiful scene through the doors. An
artist saw the city of lights across the river. And these are
places of wonder and beauty – places the dying want to go.
Another thing about the second category of NDA – which I
think goes in the face of what most people would like to
believe – is that dying people know they are dying. They
know even if they haven’t been told. Families go through
tremendous gyrations trying to hide that fact from the dying
person, because they’re afraid it would terrify them, when
indeed the dying person is also trying to hide it from the families.
It gets crazy. We come across as geniuses in hospice
for predicting things; it’s only because we listen to our patients and they tell us.
UH: You pay attention. (Laughter) Right; like, what time
is high tide?
MC: Exactly. And this second category – the things that
they need so they can go on and die peacefully – has certain
attributes. For me, it was initially shocking that patients get
to a point in the dying trajectory where they’re eager to go on.
I think when they have had these experiences of seeing people,
seeing places, knowing when they’re going to die and
knowing they’re getting ready for this, suddenly it’s like a preview
of a coming attraction and it’s appealing. That’s when all
the knots untie. That’s when it’s okay, this is what I’m going
to be doing and I’m not afraid and I’m not alone, I see where
I’m going; now it’s time to clean up before I leave and these
are the things I need.
Choosing the time of death is profound in that group of
messages, because while patients don’t have the ability to
stop the fact that they’re dying, they very often have the ability
to choose when they go. I am talking about natural deaths
at home and not referring to artificially interfering with dying.
They can choose. They’ll either wait for the people they love
to be there; or sometimes in order to spare them, or if they’re
real introverts like my Dad, they’ll wait for the time that the
people they care about the most are not present. When my
father died alone, while I was with Mom, it was in the middle
of the night; he never wanted a scene. He just wanted to
make sure I was there for my mom.
UH: That reminds me of a theme that was really touching,
which is the great lengths the dying will go to before
leaving out of compassion or concern for others in their life.
MC: Very much so. It almost becomes their last act – to
fix something before they go; very often to fix a relationship.
Dying people have a big fear of leaving an emotional train
wreck behind. They’ll feel that relationships need to be fixed,
and not only between themselves and the people behind, but
also between the people behind.
UH: It’s amazing to read about all the healing and even
joyful occurrences around a death.
MC: Amazing. And I think of the millions of times people
have said to me, oh, you work for hospice, isn’t that depressing?
I always think: if you could just be here for one minute
– see what I see, hear what I hear. Sad yes. Depressing no.
It’s just so moving. Beautiful gifts come back to you of keeping
life in perspective; of what matters and what doesn’t.
UH: Before they die, a lot of people need to hear a basic
message, which you describe as this, “Let me know you’ll be
okay and please let me go.”
MC: Yes, because ultimately they have to go. My mom
kept giving my father deadlines. Well, you can’t die now
because it’s almost Thanksgiving; the kids are coming. You
can’t die now, it’s almost Christmas and the kids are coming.
She kept giving him more and more deadlines and the poor
guy was like okay…. okay…. When she said you can’t die
now because your birthday is coming, he finally got very defiant
and said it’s my damn birthday! (Laughter) He died two
weeks before it, like I’m on to your game!
UH: That reminds me of another chapter title – “that
people die as they live – intensified.” This seemed to be
more than a simple observation and important for caregivers.
MC: It’s very important. More than anything, it gives the
caregivers a much more realistic framework of what to
expect. Hollywood has just ruined death and dying.
(Laughter) That’s the only exposure some people have. It’s
important to know that nice people get nicer and quiet people
get quieter. Basically, the behaviors that carry us through life
intensify to carry us through dying. To expect a sort of deathbed
conversion – forget it; it doesn’t happen.
UH: I remember that point being well exemplified in a
story about a priest and his friend who were known for their
banter and constant joking with one another. That might be
a good story to share with the readership.
MC: That was Casey and he was a riot; his best friend
was the parish priest, who was also a volunteer EMT. They
were both around 70 years old and very close. They just
incited each other all the time; it was constant one-upmanship,
‘my fish was bigger than your fish.’ They loved it and the
people around them loved it.
I was there with his grown kids and his wife. Casey was in
a coma and dying and his best friend came to say a mass
around his bedside. It was very emotional for the priest; he
was in tears through most of the mass and when it came to
the homily, he was talking directly to God about how hard it
was to lose his friend. He went on as though he was begging
God, asking for some reason or explanation as to why, and
how hard it was to see him in this condition – almost pleading
for an answer. And out of a coma, Casey woke up and said
it’s your damn sorry jokes that have put me in this mess and
then he slipped right back into coma. (Laughter) We were hysterical.
People around the bed were roaring and somebody
had to go open the wine and then it became the Irish wake
thing. It’s who they both were. He just slipped back into the
coma with a smile on his face. He died peacefully a couple
hours later. Humor is, of course, a wonderful release.
UH: What are some suggestions or tips you would offer
people that are working with death and dying?
MC: That’s really why I wrote the second book, Final
Journeys. That book is actually the prequel and should be
read first. After Final Gifts, I felt I had made dying seem so
pretty and sweet and didn’t focus at all on what a hard job
hard it is. It is an emotionally hard job. The harder you work,
the worse it gets and your reward is that you lose someone
you love. So I wrote that book with some real concrete tips
on how to deal with the craziness that goes on.
Basically, I would say right now: prepare. If you, Matt, don’t
have a living will, do it. Think in terms that death is something
that is going to happen in your life no matter what you
do. And think about how you would like it to go. It’s your last
opportunity for creativity, rather than just this awful thing
that’s happening. Because basically we have professional
people that take care of the awfulness of it, so prepare and
learn as much as you can. I would like to think that having read
my two books, for instance, you see death a little differently.
UH: Very much so.
MC: And the more you learn, the less fear you have
about it; fear is one of the most difficult parts of dying.
UH: Yes, along with the fear of physical suffering, people
may confront a fear of the unknown or fear of dying alone.
MC: Interestingly, the fear of physical suffering diminishes
because we don’t let them suffer. The first thing patients
say is ‘don’t let me suffer’. I have had people say ‘it’s not the
dead part I’m worried about, it’s what I have to do to get there’.
It’s hard for the dying to anticipate physical suffering and
there is a tremendous fear of the unknown, because guess
what? Even though we all do it and even though one out of
one go, we never talk about it and very little studies are done
on it. When I did the research for my second book, only 7% of
medical schools were teaching pain control. How’s that for
denial? Our main concerns in hospice are: are you comfortable
and can you function? Are you living instead of dying?
That’s it. That’s what propels my entire day. Are you comfortable?
Can you function? Can we help you live until you die?
UH: In your experience, do the majority of individuals
overcome the fear of the unknown or the fear of being alone
before they pass?
MC: Not everyone has a fear of being alone at their
death. The fear of dying alone is not true for introverts.
People who live introverted lives have introverted deaths.
Another pattern we see is that mothers of any age often die
in the middle of the night. If you have kids, there’s something
magical about getting each one of them tucked into their bed
sound asleep and the dishes are done and you finally have a
few minutes to yourself. So it’s not at all uncommon for mothers
to die in the middle of the night when their babies are
tucked in. I don’t care if their babies are 75 years old.
Sometimes when somebody is stuck in their dying, we ask
people to leave and that’s all it takes. I recall one young man
who was a high school coach. Just graduated from college,
he had gone back to coach at his old high school; he was this
big super hero. He was dying of a brain tumor and the house
was a mob scene, packed with kids from school all the time;
they just loved this guy. I finally said why don’t we give John
a little bit of privacy for a few minutes, and everybody filed
out. I remember the kids just sat all along the stairs, all the
way down to the first floor of the house. We got to talking on
the stairs, laughing and joking and stuff. He could hear that
they were nearby. When I went to check on him, he had died.
He was waiting out of concern for his kids; that was so who
he was.
Dying children often send their parents away. That’s a
tough one. We try to prepare parents ahead of time. Kids up
until the age of 7 or 8 are still into magical thinking; when they
have the experiences of beings that we can’t see, of beautiful
places and castles and butterflies, they’re curious and
they want to go. But when they look at their mom and dad’s
grief-stricken faces, they’re rooted here. So, they often send
their parents away. That’s something that takes a lot of
preparation. It’s interesting to talk with the neonatal nurses
about the patterns of how babies die. Even with little
neonates, there seems to be an awareness of causing their
parents suffering and trying to spare them.
UH: There seems to be such a sense of compassion and
making sure one’s death has the most positive impact on the
people around them.
MC: Absolutely. It’s like that human desire to have a
phoenix rise from the ashes, to make sure you don’t just
leave devastation behind, or leave people behind unable to
cope without you. That’s also very true of dying fathers as
you can well imagine.
UH: I recall reading about an accountant who delayed
his death for months out of concern for his wife’s survivor
benefits that increased after the first of the year! (Laughter)
MC: Right - for survivor’s benefits. (Laughter) He told
me that in August and though he should have died earlier, he
died January 1st at 3am. Of course, his wife was furious.
She was like; I didn’t care about the survivors benefits! But
for him, he wanted to care for her. Accountants die in
accounting ways. (Laughter)
UH: While assisting others as they approach death
seems immensely challenging and difficult, you convey that it
can be joy-filled as well.
MC: I don’t think there is a more moving job on the face
of the earth. I have had so many families say that, as caregivers,
it’s the hardest job they’ve ever loved; taking care of
someone you love who is dying.
UH: And hospice goes to great lengths to help them
experience death in this way.
MC: One of hospice’s goals is to give the dying person
as much control over this last journey as possible. Think of
how powerless we feel getting swept up in the medical
machine; but our patients are given options and choices and
they can refuse anything they want and nobody gets upset.
Giving them that control diminishes their sense of loss, or
fear of being out of control. And, of course, dying in your own
bed at home feels so safe.
Going back to your questions on tips, the biggest thing is
don’t wait until you’re dying to say important things. I mean,
really – say it now. We’re all going to die. I would like to have
control. I would like to have bagpipes and make sure the
jewelry goes where I want the jewelry to go, etc. I also don’t
want regrets, and so I pay attention now to say thank you, to
say I am sorry, to say that was thoughtless of me, or please
forgive me. Don’t wait until you’re dying to do all of that,
because dying is a big enough job. That is the business of
every day living.
UH: Thanks so much for your time, Maggie.
MC: You’re welcome and thank you for the opportunity.
About Maggie Callanan
Since becoming a hospice nurse in 1981, Maggie Callanan has studied,
taught, and written about death and dying, including the unique and symbolic
communication of the dying, which is often labeled as “confused language”
and consequently often ignored by professional and family caregivers.
Addressing medical, personal, emotional and spiritual aspects of life's final
journeys, Maggie delivers practical, no-nonsense answers to difficult questions
tempered by humor, wisdom and compassion.
She is the co-author of the celebrated book Final Gifts: Understanding the
Special Awareness Needs and Communication of the Dying, now published
in nine languages. She was the first coordinator and contributing author of
the “Dealing with Death” column in the American Journal of Nursing.
Maggie is a world-renowned speaker on topics relating to the care of the
dying, as well as coping strategies for hospice staff and volunteers. Hospices,
hospitals, nursing and medical schools, church groups, community groups,
and national conference audiences have greeted her enthusiastically.
She is the coordinator of the National Hospice, Palliative and Home Care
Speakers Bureau, and has served as a board member of the International
Association of Near Death Studies (IANDS) and the facilitator of the IANDS National Capital Area Chapter support
group for Near Death Experiencers.
In 1995, she was named the Hospice Clinician of the Year and received the prestigious National Hospice and
Palliative Care Organization’s Heart of Hospice award.
Maggie divides her time between the New England coast, the DelMarVa peninsula, and the Washington, DC
metropolitan area. To learn more, visit www.maggiecallanan.com
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