A Deeper Dive into the Interventions: Finding the Divine/The
Divine Finding us
Finding the Diving in the midst of suffering is often
predicated by finding the patient’s source of spiritual strength. These two interventions can provide a solid foundation
upon which the patient may build their faith as they face end of life. As in all interventions, the Chaplain must be
certain that these are congruent with the patient’s desire for spiritual
support of this nature. In this article
we are simply calling to the Chaplains’ attention the fact that these two
interventions are but 2 of 21 interventions to be employed in the spiritual
caregiving dynamic.
Perhaps a review of how the Chaplain arrives at this stage
of the Spiritual Plan of Care. First,
relationship is built through trust. The
Chaplain will gain some sense of the Spiritual Concern the patient exudes and
confirms or clarifies that with the patient.
From that point, a goal or expected outcome is identified by the patient
as the Chaplain skillfully converses with the patient. At that point, the Chaplain identifies which
interventions will benefit the patient the most. This sounds robotic, but in the dynamic of
the pastoral care encounter it is far from that. Further, the Chaplain has no agenda to force
the patient to identify a goal or expected outcome. In fact, those terms are never used. It simply is what the patient would like to
accomplish in his or her life…no arm-twisting or spiritual abuse ever!
What follows is a case study. I would ask that you put on your Chaplain hat
and participate with this family. What
would you do? Would you use either of
these interventions?
One of the most used terms
in describing hospice care is ‘journey’.
We join our patients on their journey. We make the journey with them…
and so forth. What exactly are we talking
about when we use the work ‘journey’?
A journey is a trek from one
place to another. Is it too graphic to
state that the hospice journey is a trek from wellness to illness to
death? Or from living in health to living
in the shadow of death? What then can
the hospice Chaplain do to assist this sojourner? Traveling, for me, has often been fraught
with taking a wrong turn, getting lost, losing time, going extra miles when I
could have saved time by taking the right route. Somehow, I see these characteristics of my
travels, as holding true with patients.
Could we not liken taking a detour, losing time, traveling extra miles
on the hospice journey to denial, emotional distress, anticipatory grief? And, then, can we truly place a value on
these very human responses as a waste of time or a delay in the journey? I think not because they are a real part of
the journey and the stories told in these junctures are vital to understanding
the life of the patient. In the American
Book of Living and Dying, one of the key issues of life is ‘meaning.’ What gave the patient meaning and
significance in days of health and vitality is no longer the same. Meaning making at the end-of-life something
altogether different. The wise Chaplain
can explore this with his or her patients and family caregivers. What follows is the story of a husband, wife,
and two adult daughters as they made their hospice journey. As you read, pick out the moments when the
Chaplain could have provided an Intervention to explore with the patient or his
spouse issues of meaning. Also, ask
yourself what difference could the Chaplain have made with this family.
My
husband Tom was 48 when he was diagnosed with pancreatic cancer. He had a very
successful home based business and he was determined that his diagnosis would
not slow him down. We had two children together, Carrie who was 20 and Kevin
who was 21. He had a "successful" surgery in the month after his
diagnosis in June, but by July mets to the liver were discovered so he began a
series of chemo treatments in hopes of slowing the disease progression down -
but nothing seemed to work at all. In the meantime, Tom and I tried to lead as
"normal" a life as possible. We both still worked, took hikes,
dinners out, a few short trips, and in general just kept hoping that something
would finally work. He continued to decline and the disease to progress, but
Tom was amazingly strong and rarely let the disease get to him. In fact, it now
seems that he wasn't letting the doctors or me and our kids know how much the
disease was taking over. He was always optimistic that another treatment would
slow the disease progression down. But nothing did slow it down.
Initially
we had some hypothetical discussions about the end. Early in Tom's illness he
started talking about cremation and how he wanted to have his remains divided
between the two kids for them to each take to some special place. For
example, he wanted my son - who is an extreme skier - to throw the remains off
a high ski jump somewhere out west. We tried to go along with him, though
we didn't even want to talk about the end since we were all so optimistic that
something was going to come along to "cure" him from the
cancer. Well, over the next several months, my daughter (who is in
college) got emails from Tom with his latest thoughts on where he should end
up. The last email she received on this subject showed that Tom had changed his
mind about his remains being divided - that suddenly didn't seem right to him -
but he didn't provide us with where he did want to be. But the vast majority of
the time he denied the seriousness of his disease. I really believe that he was
so determined not to let the disease win that he denied and denied that it had
advanced so far, to the point that it caught him by surprise as much as us.
The
month of December he was feeling lousy. But he was still doing a little
work out of the basement office but feeling very tired and having trouble
eating He was still looking forward to a new clinical trial that was to start
the first week of January We had an appointment on December 22nd to see the
oncologist. During the appointment it was made clear that the doctor thought
things were going downhill quickly. He told him that at this point he could
only treat his symptoms and gave him an IV that afternoon. The doctor told
me he expected Tom had about 2 weeks left. We talked very little about it on
the way home.
That
evening he was very tired and depressed. Carrie pointed out to him that
the winter solstice was occurring and that the moon was the brightest and
closest to the earth as it had been for 100 years. So Tom made an extra effort
and he and I went out on the back deck and looked at the moon before he went to
bed.
The
next morning Tom just barely woke up. He was disoriented and couldn't
communicate. Several times I found him sitting on the side of the tub in
the bathroom when I left the room just for a minute. My understanding is
that the disorientation was caused by decreased blood flow to the brain as the
body began to slow down. One thing we explored initially was whether the
disorientation was due to brain mets. His doctor ordered Decadron for him to
reduce swelling caused by brain tumors if there were any. Unfortunately it
didn't help.
Within
hours he had slipped into a coma. We hurriedly got hospice care and the hospice
nurse suggested that we might receive some final gifts from Tom. My kids and I
were in total shock. Although we hadn't talked about it much we knew the
disease was progressing, and the end was coming, but we never expected it to go
so fast. The nurse also told us that hearing was the last sense to go so that
Tom would be able to hear anything we said. So we talked to Tom and told
him how much we loved him for hours and hours. I hope he heard us...in the
early hours of his coma he did respond a little bit, but we were unable to
understand him.
The
next day, Christmas Eve, Tom's mother was scheduled to arrive at 10:30p.m. The
hospice nurse suggested he would hold on until she arrived. But that was not
meant to be. Tom died at 7:30 p.m. None of us had any last words from him, in
fact, we never had the chance to acknowledge together that he was in fact, not
going to beat this disease. I have felt cheated of the final days that I
expected to have when we would share our love for each other and plan to meet
in a better place.
I
have a lot of problems with the lack of closure with Tom. While we had
gradually acknowledged to each other that he might not make it, we'd never
really accepted it or talked about what it meant. I always thought we'd have a
period of time when he was in hospice care when we would talk more and say our
good-byes. While I, and my kids-said lots of good-byes and I love yous while he
was in a coma, he was never able to communicate with us again. I still replay
those last few days over and over and wonder how we didn't know he was so close
to the end and wonder if he knew? I keep thinking that I might run across a
good-bye note or something like that, but I don't think there is one.
Although
the suddenness of Tom's death has been very disturbing, I have finally come to
see this as a gift. He did not experience a long period of pain and
hopelessness. Dying on Christmas Eve, as sad and difficult as that is going to
make future Christmas Eves, is probably much better than had it been Christmas
Day. Waiting for his mother to arrive was probably too difficult for him, it
would have made it harder for him to let go-when he was clearly ready to do so.
And he and I did share the winter solstice the night before he went into his
coma.
Final
gifts come in different forms. They aren't always the last minute moments of
lucidity when good-byes are said. We sure didn't get that, but I have
come to feel that we received other messages in other ways.
For
now, we have put Tom's remains in a basket, wrapped it in
the cozy blanket he always used on the sofa, and surrounded it with mementos.
Since we are so sure that Tom’s spirit is in heaven and with us, we are able to
disassociate that box from the real Tom, but at the same time, use it as a
place to remind us of some of our times together.
Carrie
had a hard time deciding whether to go back to school in January. She wasn't
sure if she would be able to concentrate on school, but at the moment she is
highly motivated as she is studying cell biology and lining up some lab work in
a cancer research project. "Funny" how her dad's disease has
helped her find the direction she wants to concentrate on in school. Eleven
years ago, my dad died of leukemia and a side effect was that my sister decided
to go to medical school at age 32!
I
went back to work in mid-January and that keeps me really busy and distracted.
But that isn't enough. I try to figure out what I'm supposed to do with my life
now that my much loved husband is gone. He and I did just about everything
together and we were just getting to the point of planning our retirement and
now I don't have a clue what to do.
copyright
2000 Susan Peticolas Lahti
